What Cause of Endometriosis?

Actionable Insights into the Cause of Endometriosis and Evidence-Based Treatments on the Horizon

Most of what you read online and in books or articles says something like “The cause of endometriosis is unknown, but we have a number of theories, some of which are more likely than others.” But what does this practically mean for you as an individual?   As someone who is looking for answers for pain relief or infertility solutions or a diagnosis or why your endo recurred, you probably want practical answers not abstract theories. Actionable answers seem remarkably elusive.  To add to your frustration, you may also find yourself stumbling upon a storm of “controversies” regarding the best treatment options, further muddying the water in your personal quest for answers.

Basically, endometriosis is a chronic and often painful condition that affects at least 10% of women (XX) of reproductive age and significantly, but not entirely, fueled by sex hormones, mainly estrogen.  It is exceedingly rare in men (XY) but has been reported with high doses of prolonged estrogen therapy for prostate cancer and similar conditions.  Thus, the scope of how many people with endometriosis may be changing. Endo may have increasing implications for trans women who might be prescribed prolonged estrogen therapy. 

This article is an introductory overview of the most current research on the etiology, pathobiology, and potential therapeutic strategies for this extremely complex and prevalent condition.  In other words, it attempts to connect what we know with some practical insights for you to base decisions on, including factoring in what may be coming as options down the road. This may or may not alter your decision-making today as well.  

At the end of this article, we will introduce some practical tips and strategies for getting you to where you want to go. But you must understand the basis for these first, or it won’t make sense.   

What is Endometriosis?

Endometriosis is a medical condition characterized by the growth of endometrial-like tissue, similar to the internal lining of the uterus, outside the uterus. You see this mentioned a lot, but what does it mean exactly?  It means that the cells look quite similar under the microscope, but molecularly they are very different.   

Gene expression : Endometriotic cells often express genes associated with survival, inflammation, angiogenesis (blood vessel formation to have access to nutrients), and invasion more highly than typical endometrial cells. Major examples include genes coding for COX-2, VEGF, MMPs, and various cytokines, which are often upregulated. These all encode for aggressive epigenetics (something you will read about below): Epigenetic differences, including DNA methylation and histone modification differences, have been observed between endometriotic and endometrial cells. These changes can alter gene expression without changing the DNA sequence itself.

Hormonal responses: Endometriotic cells often show altered responses to hormones, including estrogen and progesterone. For example, they usually contain higher levels of aromatase, an enzyme that produces estrogen.  In addition, they may be less responsive to progesterone compared to normal intra-uterine endometrial tissue due to changes in progesterone receptor expression.

Immune response: Endometriotic lesions often contain immune cells, such as macrophages and T cells, and produce pro-inflammatory cytokines. This suggests an ongoing inflammatory response, which may contribute to the symptoms of endometriosis and the survival of endometriotic cells outside the uterus.

The presence of these aberrant endometrial-like tissues in ectopic or unusual locations often results in chronic pelvic pain, intestinal symptoms like bloating, fertility problems, and a lot of other symptoms that can significantly impact the quality of life. 

The Prevalence and Impact of Endometriosis

Beyond affecting at least 10% of XX women and potentially an increasing number of XY trans-women, the condition is detected in up to 50% of women seeking treatment for fertility issues. Moreover, epidemiological studies suggest that women with endometriosis may be at a higher risk of developing other health conditions including, but not limited to, asthma, rheumatoid arthritis, intestinal dysbiosis, other immune dysfunction, cardiovascular disease and even cancers like ovarian, breast and melanoma. So, while endo cannot explain all symptoms, these symptoms and signs may still be very related and due to a common root cause of endometriosis. Too often, an endo diagnosis is extremely delayed, up to a decade, because medical evaluation and testing do not explore these connections.  In other words, for example, intestinal complaints are looked at in isolation, and connections to painful periods, pain during sex, or infertility are overlooked.   

Symptoms and Diagnosis of Endometriosis

While debate concerning possible causes of endometriosis may continue for some time and the etiologies may overlap or differ between individuals, the first step is to get a correct diagnosis. That leads to the best personalized and informed treatment plan. 

The symptoms of endometriosis  can vary greatly based on where it is located in your body, the inflammation it is causing and all of the related conditions. But, the most common symptoms include bloating, chronic pelvic pain (both cyclical and non-cyclical), painful menstrual cycles, painful intercourse, and pain during bowel movements and urination. In addition to physical discomfort, endometriosis is often associated with fatigue and depression, further compounding the impact of the condition.

Diagnosing endometriosis is challenging due to the overlap of its symptoms with more common conditions. This can result in up to a decade of visiting emergency rooms and various specialists, who look at the symptoms through their specialty’s diagnostic lens with somewhat of a tunnel-vision result.  So, a gastro will focus on the gut, a general gynecologist will focus on the uterus and ovaries, a neurologist will focus on nerves, a urologist will focus on the bladder, and so on, all looking for common diagnoses within their specialties. These more common diagnoses are usually not endometriosis.  Further, there are no specific blood tests yet and imaging is not very accurate. However, inflammatory markers and other tests can help an endo specialist hone in on the diagnosis.  Similarly, imaging via ultrasound or MRI may be helpful in finding obvious signs of endometriomas (ovarian cysts filled with old blood and endometriosis tissue) or deep infiltrating type of endometriosis.  This simply helps preparation for surgery in the event of findings like disease near the sciatic nerve or growing into the bladder or rectum. However, if negative, the surgeon and/or team must still expect and be ready to handle the unexpected.

Today, a definitive diagnosis of endometriosis can only be achieved by biopsy, usually during a diagnostic minimally invasive surgery.  Ideally, the surgeon who is operating should be capable of removing any endo that is found by excising it, at that time and not at a subsequent surgery.  This is where the diagnosis overlaps with an effective known treatment, excision surgery. The skill base for this is usually beyond most general gynecologists unless they have devoted extra time and training to acquire more advanced surgical skills.  If possible, this diagnosis and possibly therapeutic surgery should be done correctly the first time to minimize misdiagnosis, complications and repeat surgeries. 

Based on some of what you are about to read, diagnostics will likely soon be enhanced, and accurate blood tests will become available for diagnosis and monitoring.  These tests will be based on proteomics and miRNA signatures, which means that endometriosis is associated with various measurable proteins and ribonucleic acids (RNA) of a specific kind, circulating in the blood.    A lot of research has already been done on this, but it is a matter of finding a combination of these that is accurate.  

Unraveling the Cause or Causes of Endometriosis

It is highly unlikely that there will be a discovery of “THE’ unifying cause of endometriosis any time soon, if ever. However, this is still possible on a gene level and is a focus of ongoing research. But when you are looking for actionable, practical answers, this uncertainty should be framed a little better.  Far more likely than not, the causes (plural) of endometriosis are polygenic (multiple gene aberrations), multifactorial, and most likely differ between individuals. The same situation exists in other diseases we treat.  There is no single cause of cancer, blood pressure problems, different types of diabetes, and so on.  Yet, treatment options are increasing because we are now searching for causative factors and targeted therapies at a molecular, genetic, epigenetic and genomic level.  That is a mouthful, but these subcellular molecular factors control everything in your body, normal and abnormal. More on this below. 

Theories

One of the most widely accepted theories for the origin of endometriosis is the very old concept of “retrograde menstruation”, proposed by Sampson. It has been both overly glorified and vilified and certainly misunderstood often. This theory suggests that endometrial tissue fragments and cells escape from the uterus during menstruation, being forced backward through the Fallopian tubes, and implant in the pelvic cavity, directly forming endometriosis lesions.  But since retrograde menstruation is very common (at least 70-90% of all women based on laparoscopy observational studies), why do most or all women with a uterus not have endo?  Also, from a molecular point of view, eutopic endometrium and ectopic endometriosis cells differ in many respects. The answer to these disconnects is that perhaps this theory is indeed totally wrong and outdated.  Or perhaps there are factors in most women that can bio-molecularly or immunologically repel the growth of spilled endometrial cells, while some can’t. Or perhaps, since we know somatic stem cells exist in the endometrium, only a fraction of a certain type of stem cell may grow and differentiate if dropped into the peritoneal cavity and not all endometrial cells.  So, before completely retiring this theory, more sophisticated studies are required with today’s scientific tools. We have come a long way since the limited science that was available more than 100 years ago, when this was initially proposed.   

One thing is for certain, for endo to grow and cause problems it must get there somehow and take root first.  Other than retrograde menstruation, how else might that happen? 

Other theories as to how endo originates include: 

1/ Müllerianosis, which means an organoid structure called a “choristoma” composed of Müllerian rests which are islands of tissue of endometrial, endocervical and endosalpingeal that are deposited in unusual areas during the growth of an embryo. This was also suggested by Sampson.   

2/ Coelomic metaplasia: this theory suggests that peritoneal mesothelium (lining) could transform into endometrial-like tissue (also proposed about 100 years ago) 

3/ Endometrial somatic stem/progenitor cells may play a role in the formation of endometriosis lesions, getting to the peritoneum either by retrograde menstruation (a variation of the original theory) or via lymph or tiny vascular transport channels 

4/ Benign metastasis, meaning that endometrial cells are transported by the lymphatic system beyond the uterus 

5/ Bone marrow pluripotent stem cells (i.e. can turn into any cell imaginable), which we know circulate in the blood, can reach the pelvis or other areas directly, implant due to a favorable local growth environment and grow.  

There are others, and variations or mixtures of the above have also been proposed. 

The truth, as almost always, is likely in between all these theories and likely differs between individuals to some extent. Today, we have molecular evidence that supports most of the above in varying degrees and tends to overlap.  

Endometriosis Growth and Progression 

Finding out how endometriosis develops will eventually lead to prevention strategies, which may be highly individualized.  But for now, the more actionable question is, once the initial cells are there, what causes them to grow and regrow, and at different rates?  It is the growth that gets you into trouble with symptoms by triggering inflammation, fibrosis (scar tissue) and pain.   Keep in mind that there are three general types of endo: 1/ superficial 2/ deep infiltrating and 3/ endometrioma.  These can overlap, or not. So, most likely, there will never be a one-size-fits-all solution. 

However, what happens with progression, when it happens and why it happens is where the rubber meets the road. In answering these questions, insights and actionable strategies can be developed.  The following are avenues or pathways by which endometriosis cells can be fueled to grow.  Therefore, they present actionable intervention possibilities, now and into the future as we identify more targets.  

So, the following is where we are going with all this.  What is medically/surgically actionable now and what you can do proactively today that may influence your personal situation?  The latter is in the realm of lifestyle and diet but grounded in science.  There is a lot of woo-woo “alternative” stuff out there but also quite a bit of holistic natural options that is evidence-informed and can be helpful.  

Genetics and Genomics

From epidemiologic, twin, single gene, and genome-wide association studies (GWAS) there is little doubt that risk factors for developing endo is largely grounded in multiple genes (polygenic) and their polymorphisms (alterations of various magnitudes).  In addition, genes can interact with each other, either amplifying or reducing disease.  But inheriting less desirable gene polymorphisms or mutations is not the be-all end-all because how these genes are activated or suppressed is dependent upon other multifactorial influences (e.g. your environment, including nutrition, toxins and lifestyle choices).  In other words, you may inherit good cards or bad cards, but how they play out can be influenced.  These influences are based on  genomics and epigenetics  and related sciences like proteomics,  metabolomics, nutrigenomics, and so on. Basically, these sciences all study how genes are suppressed or expressed.

Epigenetics

Epigenetics studies how genes are controlled or expressed without changing the inherited DNA sequence.  “Epi-” means on top of the genes.  These are modifications that attach to the DNA, like methyl groups (from diet and supplement sources), which can suppress or help activate genes. Environmental factors such as diet, hormones, stress, drugs, chemical toxin exposure alter methylation.  Directly related to endo, alterations in DNA methylation patterns in endometriotic lesions have been described.  The epigenome harbors other ways that this gene to environment interaction occurs.  This includes histone modification, which is regulatory mechanism that controls unraveling of DNA so it can be read or transcribed.  This is also subject to lifestyle and dietary influence today and is a major potential therapeutic target for the future.

Hormonal imbalances

Endometriosis is often described as a “steroid-dependent” disorder, reflecting the significant role of steroid hormones, mainly estrogen, in its pathogenesis. 

This is a VERY complex influence and defies logic in some cases.  It is not as simple as therapeutically adding or taking away estrogen or progesterone.  Rather, it depends on tissue levels of estrogen and progesterone as well as the number and sensitivity of estrogen and progesterone receptors. The hormones and their receptors work like a lock (receptor) and key (hormone).  And that is just the beginning, because there are different components of receptors and additional molecular pathway influences, before and after estrogen binds to its receptor. 

For example, there is more estrogen circulating when someone is significantly overweight, because there is production from the ovaries AND estrogen from fat cell interconversion AND from environmental xenoestrogen endocrine disruptors that are stored in fat. So that would mean the people who are overweight are more likely to have endo, right?  Wrong.  Endo is more common in women with a healthy BMI. In fact, problematic deep infiltrating endo and endometrioma types, is more prevalent in those who are very thin (BMI less than 18.5).  Why?  This is unknown, but various homeostatic mechanisms like estrogen receptor upregulation can hypothetically lead to higher estrogen sensitivity. Also, hormonal signals are not the only molecular influence on endo.

As another example, after  menopause , estrogen levels drop and endometriosis does tend to regress, but not in everyone. That is partly because endometriosis lesions can produce their own estrogen and there are likely other molecular growth factors in play.  There are also more ERβ receptors on endometriosis cells, and this causes higher prostaglandin production (which contributes to pain at any point in life).

In general, lowering “estrogen-dominance” to some degree suppresses endometriosis, but ideally not using synthetic progestins to “balance” hormones.   Progesterone (natural) and progestins (synthetic) do downregulate and limit the mitogenic (growth) influence of estrogen but progestins can also be a mitogenic in some tissues (e.g. breast).  In addition, overall progesterone or progestins exert less of an effect on endometriosis than on eutopic endometrial tissue normally found inside the uterus.  Likewise, dropping estrogen levels radically via GnRH agents for a relatively short period of time does not achieve the desired result and causes side effects and harm.  The risk vs benefit is particularly precarious here. Potentially, chronic gentle suppression might be more effective, and at least safer.  This can be achieved by using progesterone.  Synthetic progestins like norethindrone acetate can be used but with the caveats above. Alternatively, you can also help “balance hormones” by consuming seaweed, regular exercising and other lifestyle choices, like active xenoestrogen toxin avoidance.

Inflammation 

Endometriosis may be partially a product of inflammation and is also characterized by generating an inflammatory response itself.  So, it can snowball and contribute to the development and persistence of symptoms. Immune cells, such as macrophages, NK and T cells, are found in abundance in endometriosis lesions, and their interactions with endometriosis cells can promote the formation and growth of these lesions. Additionally, the peritoneal fluid of women with endometriosis often exhibits an altered composition, with increased levels of pro-inflammatory cytokines and growth factors.  

Inflammation can be from various sources, including infection which may be clinical (in other words you feel sick) or chronic subclinical.  For example, it is well established that chronic endometritis (infection inside the uterine lining) is present in endometriosis patients more often than those without endo. This is an association, and the cause-effect is not well worked out, but more recently various bacteria have been implicated.  At least in animal models, antibiotic treatment targeting those bacteria have produced regression of endometriosis lesions. Bacteria from the uterus or cervix can easily travel, either directly through the Fallopian tubes or via the bloodstream, to cause inflammation in the peritoneal cavity.  This inflammatory response is postulated to lead to progression of endo. 

Leaky gut, which may be related to an unhealthy low microbiome diversity, can lead to bacterial fragments, called lipopolysaccharides (LPS), seeding the peritoneal cavity as well.  This in turn causes inflammation and the same potential effect on endo growth.   

Inflammation is not all due to infection.  It can be due to a myriad of other non-infectious factors including stress, autoimmune disorders, obesity, systemic diseases like diabetes or pre-diabetes, mast cell activation, toxin exposure and so on.  

Most of these inflammatory conditions are molecularly actionable and are the target of research. For now, general anti-inflammatory strategies can be effective, both pharmacologic and integrative.   

Dysbiosis

Dysbiosis of the gut has a direct negative effect on the gut-endocrine axis and can impact endometriosis growth.  There are three significant ways this happens. 

Estrobolome: This term refers to the fraction of gut microbiota capable of metabolizing estrogens. In healthy individuals, the estrobolome helps maintain a balance of estrogen levels by contributing to the enterohepatic circulation of estrogens, thereby affecting the overall circulating and excreted amounts of these hormones. Dysbiosis, however, can disrupt the functioning of the estrobolome, leading to alterations in the metabolism of estrogens. In the context of endometriosis, this dysbiosis may lead to excess circulating estrogen, which stimulates the growth and survival of endometrial cells outside the uterus, contributing to endometriosis. 

Gut-Endocrine Axis: The gut microbiota also influences the gut-endocrine axis, which refers to the complex interplay between the gut microbiota, gut cells, and endocrine organs. Dysbiosis can result in changes in gut permeability (also known as “leaky gut” introduced above), leading to increased inflammation and immune dysregulation. This can, in turn, disrupt normal hormone regulation, potentially exacerbating conditions like endometriosis.

Gut-Brain Axis: Dysbiosis can also influence the gut-brain axis, a bi-directional communication system that links the central nervous system with the enteric nervous system. Changes in the gut microbiota can affect this axis and lead to altered pain perception and increased stress responses, both of which can affect the experience and progression of endometriosis.

Cancer molecular shared growth drivers

It’s important to note that a very small fraction of women with endometriosis might develop an  endo-associated cancer  (<1%), and gene mutations probably drive that.  Having said that there is overlap of these genes with more aggressive variants of endo, like deep infiltrating and endometrioma.  Meaning, they may not lead to cancer but may still fuel a more aggressive form of endometriosis.  This has led some researchers to propose that endometriosis is a pre-cancerous condition in a small percentage of those with endo.  The most studied gene in this regard is ARID1A, but the following have also been associated: KRAS, PTEN, HOXA10, VEGF, ESR1 and ESR2, and FN1.  Since there is a lot of research on these in the cancer world, there may be targeted therapies for more aggressive variants of endometriosis arising from this research.

Current Treatment Strategies for Endometriosis

Current effective treatment for most endo patients is built upon a personalized evaluation, correct diagnosis, and expert excision surgery to reduce the amount of inflammation and triggering of pain and other symptoms.  This is followed by some degree of medical suppression in many patients, usually on a hormonal basis.  Personalized guidance is key, which does not go overboard by either over or under-treating. 

Excisional surgery is today’s cornerstone because it yields an accurate diagnosis and removes all visible disease if possible.  But surgery should not be performed indiscriminately.  It should be done by an expert if the index of suspicion for endo justifies the surgical risks.  It seems prudent to reserve consideration of medical suppressive treatments for use after an accurate diagnosis is made vs. use of potentially very dangerous hormonal therapies based on a suspicion of endo only.   

Before and after surgery there are quite a few optimization strategies, including pelvic floor physical therapy (PFPT) and a pain management plan which consider what the pain triggers are.   These can differ between people. Both supportive therapies are complex but integral to treatment in most cases. This helps you get ready for surgery and go through surgery more smoothly and then transition to a life without endo.  

In addition, evaluation of the related conditions covered in this article, like dysbiosis and possible small bacterial overgrowth (SIBO) and leaky gut is mandatory.  The symptoms can easily cross over from these conditions and endo, so it helps to sort out other related causes of pain and bloating. Finally, evaluation should also consider mast cell activation, chronic inflammatory response syndrome (CIRS), autoimmune hypothyroidism, fibromyalgia, irritable bowel syndrome (IBS) or disorders of gut-brain interactions, and interstitial cystitis (IS).  There are also conditions not directly related to endo but often associated, like Lyme disease and mold.  The latter two can accentuate inflammatory response and waterlogged damp buildings often have black mold.  The CDC is also warning that tick-borne disease like Lyme and Babesiosis is on the rise.    

Also, as you are now aware from reading this article, there are many other steps you can take to influence and limit the course of endo recurrence and progression .  None of this is magic and none of it is a quick fix but when guided by an expert it is also generally pro-health, not dangerous and not expensive by and large.  Again, best results are obtained with expert guidance. 

Emerging Therapeutic Approaches

Although we have some options today, there is a pressing need for novel, effective therapies for endometriosis beyond surgery and variations of hormonal therapy. For instance, immunotherapies that target specific cytokines or immune cells involved in endometriosis are currently under investigation. Other promising areas of research include therapies targeting the altered metabolic environment of endometriosis lesions and neuromodulator treatments aimed at disrupting pain pathways associated with the condition. This article is not intended to cover these future options in depth, but based on all the potential causes and influencing factors it becomes easier to see what is coming sooner than later.   

Some recent example animal studies and concepts which should get to human trials include: Targeted anti-inflammatory therapy,  antibiotic therapy targeting specific bacteria like Fusobacterium, antibody (AMY109) that binds IL-8, small interfering RNA for VEGF (siVEGF), epigenetic and histone modification targeting endo-related gene transcription including estogen and progesterone receptors, epigenetic modification of T-cell immune response in endo, ARID1A and related “cancer gene” targeting, and more. So, while we do not have these available in clinical practice yet, the research wheels are turning.  Certainly, that can be accelerated with more funding, but it is ongoing. 

Holistic Proactive Principles

While we await mainstream targeted molecular therapies you should know that the same molecular pathway targets are also influenced by natural  integrative approaches .  They may not be laser targeted on a specific molecular pathway but that can be a good thing.  Abnormal cells like endo know or learn how to work around blockades from therapy and the treatment can stop working. We know that from other diseases where molecular therapies are already quite common.   Mother nature has considered that problem, so to speak, and a lot of nutrients can have a synergistic favorable effect on multiple molecular pathways at the same time.  

Further, your microbiome, estrobolome, inflammation, oxidation, nutrition, stress, lack of exercise, and so much more, impacts your body on the basis of epigenetics that was introduced above.  More specifially, a significant part is related to nutrigenomic epigenetics.  This can be through food or well selected supplements and botanicals. 

It’s critical to note that this does not mean loading up on the weirdest supplements you never heard of that cost an arm and a leg.  The 80/20 rule, which says that you get 80% of your result from 20% of an action, suggests that you can get far with a personalized antioxidant anti-inflammatory diet.  This is often simply done via a whole food plant-based diet.  Combine this with an exercise plan and stress management and you are 80% of the way there. 

Conclusion

Endometriosis is a complex, multifaceted, polygenic and multifactorial disorder, and much remains to be understood about its causes and progression. As our understanding of endometriosis deepens, so too does our ability to develop accurate diagnostics and targeted, effective therapies. But for now, in expert hands and with your own proactive commitment to nutritional and lifestyle options, outcomes can be good to great. There is no disease or condition where everyone gets the benefit of a great outcome, but certainly in the case of endo it can be optimized by seeking out an endometriosis expert.  In addition, expert consultants, especially those with integrative or functional medicine training, can take it one step further.  

References: 

1. Endometriosis: Etiology, pathobiology, and therapeutic prospects
2. The Main Theories on the Pathogenesis of Endometriosis
3. Nutrition in the prevention and treatment of endometriosis: A review
4. Cancer-Associated Mutations in Endometriosis without Cancer

Updated Post: July 16, 2024

1 year ago Endometriosis , Endometriosis Education No comment

Genetics of Endometriosis: Understanding the Genetic Links in Endometriosis.

Endometriosis is a significant cause of discomfort and can greatly reduce the quality of life.  Although the disease’s origin remains somewhat elusive, research indicates a potential familial pattern. This article delves into the possible genetic basis of endometriosis, exploring its genetic and genomic aspects and their implications for improved diagnosis and treatment.

The Enigma of Endometriosis

Endometriosis is a condition where tissue similar to the endometrium – the internal lining of the uterus – grows outside the uterus. This can occur on the ovaries, fallopian tubes,the tissue lining the pelvis, and beyond. In some cases it grows superficially, in others it can invade deeply into other tissues or affect the ovaries. Despite extensive research, the exact cause of endometriosis and the reason for these variants remains an enigma. However, an interesting pattern has emerged over time – the disease appears to cluster in families, suggesting a potential genetic link.

Is Endometriosis Genetic?

Familial  predisposition suggests that endometriosis could be inherited in a polygenic or multifactorial manner. Polygenic or multifactorial inheritance refers to a condition that is affected by multiple genes (polygenic) and influenced by environmental factors (multifactorial).  Since everyone is different, this may also help explain why some people get one variant of the disease and others do not.  

Challenges in Understanding the Genetic Link

Several factors make it difficult to understand the genetic link in endometriosis. The foremost is the diagnostic method. Endometriosis can only be definitively diagnosed through invasive procedures like laparoscopy or laparotomy. This can often lead to under-reporting of the disease with many people walking around undiagnosed for years. Another factor is the disease’s heterogeneous nature mentioned above, as it can manifest in different variants and locations within the body, suggesting potentially diverse disease processes.  Once these genetic links, which likely overlap, are unraveled and mapped then we will be able to diagnose endometriosis through blood tests rather than surgery.  Each genetic link eventually leads to molecular signals which can be used for diagnosis, treatment and follow-up monitoring.  

Familial Clustering and Evidence

Epidemiologic research has shown a familial clustering of endometriosis, meaning it appears more frequently within families. However, it does not seem to follow a simple Mendelian inheritance pattern. This observation supports multiple genetic factors contributing to the disease, consistent with polygenic/multifactorial inheritance and environmental impact.  

Genetic Mapping and Endometriosis

Gene mapping is a technique used to investigate potential gene mutations or polymorphisms associated with diseases like endometriosis. This method involves looking at the genome for excess sharing of informative polymorphic microsatellite markers in affected siblings. Studies using this method have highlighted areas in chromosomes 10 and 20 that may be linked to endometriosis. Despite the identification of these risk loci, the exact mechanism by which these genes influence the development of endometriosis is not yet fully understood.  So this association means someone may be at higher risk but does not guarantee that endometriosis will actually develop in any given individual. 

Genome-Wide Association Studies

Genome-Wide Association Studies (GWAS) represent a very promising method used to identify differences in the genetic makeup of individuals that could be responsible for variations in disease susceptibility. Basically, they compare the genomes of people with a certain disease (like endometriosis) to healthy individuals to look for genetic differences.

GWAS scans the genome of individuals for small variations, called single nucleotide polymorphisms (SNPs), that occur more frequently in people with a particular disease than in people without the disease. Each study can look at hundreds or thousands of SNPs at the same time. Then statistical methods can help identify which SNPs are associated with the disease.

First, genetic markers identified through GWAS could potentially be used to develop a genetic test for endometriosis. This could enable earlier and more accurate diagnosis of the disease, which is often difficult to diagnose due to its nonspecific symptoms and the need for invasive procedures to confirm diagnosis.

Second, as an example of treatment potential,  if a GWAS identifies a SNP in a gene involved in inflammation that is associated with endometriosis, researchers could develop a drug that targets this gene to reduce inflammation and treat endometriosis.  There are many other potential molecular pathways that influence endo development and progression that can and will be targeted.  

Genomics of Endometriosis

While genetics refers to the inheritance of a trait, genomics focuses on how genes are expressed, meaning how they are turned into structural proteins and signals and so forth. Genomics studies have identified significant alterations in gene expression in endometriosis, providing major insights into underlying biology. Genomic studies will likely lead to new noninvasive diagnostic strategies and possible new therapies. 

So, deeper understanding of endometriosis genomics can provide insights into the biological pathways and processes involved in the disease.  This can, in turn, inform diagnosis, treatment, and monitoring strategies.

Diagnosis:

When we better understand the genomics of endometriosis, we will be able to develop non-invasive non-surgical diagnostic tests. For example, if certain genetic variants are found to be associated with endometriosis, a simple blood test could be developed to look for these variants.

In addition to these genetic tests, understanding the molecular signaling pathways involved in endometriosis could potentially lead to the development of biomarker-based tests. Biomarkers are substances, such as proteins, that are indicative of certain biological conditions, like inflammation or fibrosis formation. If certain molecules are found to be elevated or decreased in women with endometriosis, these could be used as biomarkers for the disease.

Treatment:

Current treatments for endometriosis are basically limited to hormonal-based therapy, pain management, and surgery. However, these approaches do not work for everyone and can have significant short and long-term side effects. Short of a complete excision surgery, which is the cornerstone of today’s therapy, these are not curative therapies. Despite world-class excision surgery microscopic invisible post-surgical residual remains a concern and we need better options to eliminate anything that might be left in order to minimize or eliminate risk of recurrence.   

By understanding the genes and molecular pathways involved in endometriosis, we can identify new targets for biological drug development. For example, if a certain gene is found to be overactive in endometriosis, an agent could be developed to inhibit this gene. Similarly, some protein-based molecular pathways can be selectively inhibited. This is reality today in many diseases and there is no reason that endometriosis should not be amenable to similar options. 

Monitoring:

Lastly, understanding the genomics of endometriosis could also improve disease monitoring. For example, if certain genetic variants or molecular signals are associated with disease progression, these could potentially be used to monitor disease progression or response to treatment. This could lead to more personalized treatment strategies and improve patient outcomes.  To the point of microscopic residual after excision surgery, if none is likely present and no signals point to that, then no additional therapy would be required.  On the other hand, if there is molecular evidence to support possible micro-residual then treatment might be initiated right away, or at least at the time of first molecular evidence of recurrence or progression. 

The caveat here is that the translation of genomic and molecular research into clinical practice is a complex process that requires extensive further research and validation. It’s also worth noting that endometriosis is a complex disease likely influenced by a combination of genetic, environmental, and hormonal factors, and understanding these will be crucial for developing better diagnostic and treatment strategies. 

Concluding Thoughts

The notion of endometriosis being genetic is supported by a growing body of research, highlighting the disease’s intricate and multifaceted nature. While our understanding of the genetics and genomics of endometriosis is still evolving, it holds the promise of improved diagnosis and treatment methods in the future. By continuing to explore the genetic foundations of this disease, we move closer to empowering those affected by endometriosis with knowledge and more effective treatment options.

In the end, unlocking the genetic and genomic secrets of endometriosis will pave the way for a future where this enigmatic condition is better understood, diagnosed, and treated.  While a lot of the above is in research or upcoming, some is available now.  Seek out an endometriosis expert who can discuss these with you and individualize a treatment plan.

Reference: 

Diana Maria Chiorean et al. New Insights into Genetics of Endometriosis—A Comprehensive Literature Review: Diagnostics (Basel). 2023 Jul; 13(13): 2265.

1 year ago Endometriosis , Endometriosis Education , Endometriosis Fertility No comment

How Does Endometriosis Cause Infertility? 

Endometriosis, a complex and often misunderstood condition, can significantly impact a woman’s fertility. Understanding the intricacies of this condition, its causes, and its effects on fertility can be vital in paving the way for effective treatment strategies.

An Introduction to Endometriosis

Endometriosis is a benign, estrogen-dependent disorder primarily affecting approximately one in ten cisgender women in their reproductive years. It may also have an impact on transgender men, where the condition may be present in a higher percentage. While it has been reported in cisgender men, it is exceedingly rare. Thus the fertility impact discussed here is that which specifically affects the uterus, Fallopian tubes and ovaries.  

Endometriosis is characterized by the abnormal presence of endometrial-like tissue outside the uterus. This abnormally growing tissue is often found in the pelvic region, such as on the ovaries, fallopian tubes, and the outer surface of the uterus. Still, in some cases, it can extend beyond the pelvic area.

While endometriosis affects approximately 10-15% of cisgender women in their reproductive years, the condition is more prevalent in those struggling with infertility, affecting up to 25%-50% of this demographic. The exact cause of endometriosis remains a subject of research and debate, and its impact on fertility is multi-faceted and complex.

Understanding The Pathogenesis of Endometriosis

While the precise cause of endometriosis is still under debate, several theories have emerged over the years, trying to explain the pathogenesis of this condition.

Retrograde Menstruation

The oldest theory is retrograde menstruation, which suggests that during menstruation, some of the endometrial tissue flows backward, through the fallopian tubes, into the pelvic cavity instead of leaving the body. These endometrial cells then attach to the peritoneal surfaces, proliferate, and form endometriosis implants.

Coelomic Metaplasia and Metastatic Spread

Other theories suggest that cells in the peritoneum can transform into endometrial cells, a process known as coelomic metaplasia. Alternatively, endometrial tissue may spread through the bloodstream or lymphatic system to other parts of the body, a process known as metastatic spread. Both these theories could explain how endometriosis implants can be found in areas outside the pelvic region.

Altered Immunity

Another theory proposes that women with endometriosis have a compromised immune system, which fails to eliminate the endometrial cells that have migrated to the peritoneal cavity. This immune dysfunction may also contribute to the progression of the disease, as the immune system’s reactions may inadvertently promote the growth and proliferation of endometrial implants.

Stem Cells and Genetics

Recent research also suggests that stem cells and genetic factors may play a role in the development of endometriosis. Bone marrow-derived stem cells may differentiate into endometriosis cells, contributing to the formation of ectopic endometrial-like tissue.

Additionally, genetic predisposition may play a significant role in the development of endometriosis. People with a first-degree relative affected by the disease have a seven times higher risk of developing endometriosis.

Learn More: Current Knowledge on Endometriosis Etiology: A Systematic Review

How Does Endometriosis Cause Infertility?

Endometriosis can affect fertility through various mechanisms:

Effect on Gametes and Embryo

Endometriosis can impact the production and quality of oocytes (eggs), as well as sperm function and embryo health. The presence of endometriomas (cysts caused by endometriosis) and the inflammatory environment they create can negatively affect both oocyte production and ovulation.

Effect on Fallopian Tubes and Embryo Transport

Endometriosis can disrupt the fallopian tubes’ normal functioning and impact the embryo’s transport. The inflammation caused by endometriosis can impair tubal motility and cause abnormal uterine contractions, which can hinder the transportation of gametes (eggs and sperm) and embryos.

Effect on the Endometrium

Endometriosis can also impact the uterine lining or endometrium, which can lead to implantation failure. Research suggests that endometriosis can alter the gene expression in the endometrium, affecting its receptivity to implantation.

Read More: Learn More About the Connections Between Endometriosis and Infertility

Current Treatment Options for Endometriosis-Associated Infertility

The treatment of endometriosis-associated infertility is multi-faceted and can include expectant management, medical treatment, surgical treatment, and assisted reproductive technologies.

Expectant Management

While endometriosis significantly lowers fertility rates, some women with mild to moderate endometriosis can still conceive without any medical or surgical intervention. However, this approach may be more suitable for younger women with mild endometriosis and no other fertility issues.

Surgical Treatment

Surgery can be both diagnostic and therapeutic in the context of endometriosis. The goal of surgical treatment is to remove or reduce endometriosis implants and restore normal pelvic anatomy and reduce the inflammatory impact. This could potentially improve fertility, particularly in women with severe endometriosis.

Assisted Reproductive Technology

In vitro fertilization (IVF) is currently the most effective treatment for endometriosis-associated infertility. IVF can be particularly beneficial for women with severe endometriosis or those for whom other treatments have failed.

Medical Treatment

Medical treatment for endometriosis primarily targets reducing the severity of the disease and relieving symptoms. Hormonal medications such as combined oral contraceptives, progestins, danazol, and gonadotropin-releasing hormone agonists or antagonists (GnRH analogs) are commonly used. However, these medications have not shown any significant benefit in treating endometriosis-associated infertility.

Read More: Natural, Medical & Surgical Treatment of Endometriosis Infertility

Looking Towards The Future: Potential Treatments

As our understanding of endometriosis deepens, new potential treatment options are emerging, such as therapies targeting the abnormal gene expression and inflammation caused by endometriosis. Furthermore, stem cell therapies and genetic interventions hold promise for treating endometriosis-associated infertility in the future. As research continues, the hope is that these advancements will lead to more effective strategies for managing this complex condition and improving fertility outcomes in those with endometriosis.

Read More: How Do Endo Fertility Issues Impact the Mental Health of a Person?

Reference: Macer ML, Taylor HS, Obstet Gynecol Clin North Am. 2012 Dec;39(4):535-49.

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Interstitial Cystitis and Endometriosis: Unraveling the Evil Twins Syndrome of Chronic Pelvic Pain

Introduction

Chronic pelvic pain (CPP) is a health condition that burdens millions of women worldwide. The complexity of diagnosing and treating CPP is often overwhelming due to the multitude of potential underlying causes and associated conditions. Two such conditions, often called the “Evil Twins” syndrome, are Interstitial Cystitis (IC) and Endometriosis, both commonly found in patients suffering from CPP. This article will explore these conditions’ prevalence, diagnosis, and treatment in patients with CPP.

Understanding Chronic Pelvic Pain

Chronic Pelvic Pain (CPP) is a prevalent health condition affecting an estimated 9 million women in the United States alone. It accounts for up to 40% of laparoscopies and 10% to 12% of all hysterectomies, indicating its significant impact on women’s health. The annual expenditure on diagnosing and treating CPP is nearly $3 billion.

The “Evil Twins”: Interstitial Cystitis and Endometriosis

Two conditions frequently associated with CPP are Interstitial Cystitis (IC) and Endometriosis. These conditions can present similar symptoms and coexist in patients, making the diagnosis and management of CPP even more challenging.

Interstitial Cystitis (IC)

Interstitial Cystitis, or bladder-originated pelvic pain, is a significant disorder related to CPP. The etiology of IC is multifactorial and progressive, involving bladder epithelial dysfunction, mast cell activation, and bladder sensory nerve upregulation. The exact prevalence of IC in the United States varies, with estimates ranging from 10 to 510 per 100,000 normal population. However, current research suggests that IC might be more prevalent than previously estimated.

Endometriosis

Endometriosis is another common condition among women with CPP, affecting more than half of the patients diagnosed with CPP. Symptoms include pain during sexual intercourse (dyspareunia), cyclical perimenstrual lower abdominal pelvic pain, symptom flares after sexual intimacy, and irritative voiding in case of urinary tract involvement. A definitive diagnosis of endometriosis requires visual confirmation of the lesion during laparoscopy and histologic confirmation of the presence of both ectopic endometrial glands and stroma.

The Overlap Between Interstitial Cystitis and Endometriosis

Research has demonstrated a high rate of overlap between IC and endometriosis in patients with CPP. This overlap poses challenges in diagnosis and treatment, as the presence of one condition does not preclude the existence of the other. Therefore, it is crucial to consider both conditions in the evaluation of patients with CPP.

Diagnosis of Interstitial Cystitis

The diagnosis of IC and endometriosis involves various tests and procedures, including the Potassium Sensitivity Test (PST), cystoscopy with hydrodistention, and laparoscopy.

Laparoscopy

Laparoscopy for direct visualization of endometriosis lesions and taking a biopsy is the gold standard for endometriosis diagnosis.

Read more: The Different Tests Used to Diagnose Endometriosis 

Potassium Sensitivity Test (PST)

The PST is a diagnostic test developed to detect abnormal permeability of the bladder epithelium, a key factor in the pathophysiology of IC. Previous studies have validated the use of the PST in diagnosing IC, particularly at the early stages of the disease.

Cystoscopy with Hydrodistention

Cystoscopy with hydrodistention is a diagnostic procedure often used to confirm the presence of IC. The bladder is filled with sterile water under passive hydrostatic pressure, then slowly drained. The presence of submucosal petechial hemorrhages, or glomerulations, confirms the diagnosis of IC.

Biopsy

During cystoscopy under anesthesia, your provider may remove a sample of tissue (biopsy) from the bladder and the urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.

Urine cytology

Your provider collects a urine sample and examines the cells to help rule out cancer.

Conclusion

This article highlights the complex interplay between IC and endometriosis in the context of CPP. It underscores the need for careful evaluation and simultaneous consideration of these conditions in patients with CPP. A multidisciplinary approach, including the use of PST and concurrent cystoscopy and laparoscopy, is crucial for accurate diagnosis and effective treatment of concurrent interstitial cystitis and endometriosis.

1 year ago Endometriosis , Endometriosis Education No comment

Endo-Fighting Microbiome Optimization: Research-based Tips

Endometriosis is partly caused by, and causes, inflammation. The origin or genesis of this
inflammation is probably multifactorial but recent research suggests that the microbiome, the
community of microorganisms living in or on the human body, plays an important role through
inflammatory pathways. Dysbiosis, which means an imbalance or impairment of the microbiota,
is observed in endometriosis, and is thought to both contribute to and result from endo.

Studies have focused on the gut, peritoneal fluid, and female reproductive tract microbiota to
identify specific microbiome signatures associated with endometriosis. The gut microbiome, in
particular, has been extensively studied. Changes in bacterial composition, such as increased
levels of Proteobacteria and decreased levels of Lactobacilli, have been observed in the gut of
endometriosis patients. Other body sites, including the peritoneal fluid and female reproductive
tract, also show altered microbiota in endometriosis.

The dysbiosis observed in endometriosis is believed to contribute to the disease through
various mechanisms. One theory suggests that bacterial contamination, particularly with
Escherichia coli, in the menstrual blood may lead to inflammation and immune activation in the
peritoneal cavity, contributing to endometriosis development. Dysbiosis can also affect
estrogen metabolism, through dysfunction of the so called “estrobolome”. This can lead to
increased levels of circulating estrogen and a hyper-estrogenic state, which promotes
endometriosis. Additionally, dysbiosis-induced epigenetic changes and immune modulation
may play a role in direct endometriosis pathogenesis.

Research on the microbiome in endometriosis is still in its early stages, but it holds promise for
potential diagnostic and therapeutic approaches. Microbiome testing could potentially be used
as a non-invasive tool for detecting endometriosis, complementing current imaging modalities.
The technology for doing this is already here and you can get it ordered. However, the meaning
of the results is still not well understood in any given individual. So, it’s complicated.

Beyond testing, manipulating the microbiome through interventions like probiotics, antibiotics,
or dietary modifications may offer new treatment options for endometriosis. To the extent that
you can diversify your microbiome and get it to a healthier state, this is something that can be
done with little risk or cost today. Options available to you are covered below, most of which
are focused on the bacterial part of your microbiome.

Future studies will explore the role of different types of microorganisms, beyond bacteria, such
as viruses and fungi, and utilize advanced analytical methods like shotgun metagenomics and
metabolomics to gain a more comprehensive understanding of the microbiome in
endometriosis. Newer technologies like this are significantly accelerating gains in knowledge.

Meanwhile, emerging understanding of the bidirectional relationship between endometriosis
and the microbiome has implications for potential treatment strategies available today.

Antibiotics:

Antibiotics could be used to target specific bacteria associated with dysbiosis in
endometriosis, especially if you are diagnosed with small intestinal bacterial overgrowth (SIBO).
Animal studies have shown that treatment with antibiotics can reduce the size of endometriotic
lesions and associated inflammation. In humans, we know that chronic endometritis (infection
of the uterine cavity) seems to play a role in development of endo. However, this requires
expert guidance. It’s critical to exercise caution with antibiotic use to avoid disrupting healthy
commensal (good bacteria) microbiota and contributing to antimicrobial resistance. You don’t
want to grow a bug that might be resistant to multiple antibiotics down the line.

Probiotics:

Probiotics are live bacteria that can have beneficial effects on your microbiome
health and diversity when consumed. Studies in animal models have demonstrated that certain
probiotic strains, such as Lactobacillus gasseri, can suppress the development and growth of
endometriotic lesions. Probiotics may modulate the immune response and restore a healthier
microbiota composition, potentially mitigating the inflammatory processes associated with
endometriosis. However, again, this requires expert guidance because, for example, it could
lead to ineffectiveness against or exacerbation of SIBO. This is partly because there are at least
three different general types of SIBO, based on what type of gas is produced by the
microbiome.

Prebiotics:

Prebiotics are basically food substances that selectively promote the growth of
beneficial bacteria in the gut. By providing a favorable environment for beneficial bacteria,
prebiotics can help restore a healthy microbiota balance. An example of a prebiotic shown to
be beneficial in SIBO treatment is partially hydrolyzed guar gum (PHGG). Further research is
needed to investigate the potential roles of prebiotics in endometriosis treatment, but it could
be a gamechanger for simple treatment of various intestinal disorders, leaky gut and so on.

Dietary modifications:

Diet can hugely influence the composition and activity of the
microbiome. Consuming a diet rich in fiber and plant-based foods, which are known to support
a diverse and healthy microbiota, may have beneficial effects on endometriosis. Low FODMAPs
diets, which restrict fermentable carbs, can help. Omega-3 polyunsaturated fatty acids (PUFAs),
found in fatty fish, flaxseeds, and chia seeds, have shown anti-inflammatory properties and
have been associated with a lower incidence of endometriosis. Incorporating these dietary
changes, among many others, may help modulate the microbiome and reduce inflammation.

Immunomodulation:

The microbiome has profound effects on the immune system, and
targeting the immune response could be a potential avenue for endometriosis treatment.
Modulating the immune system through therapies such as immune-suppressing medications or
immune-modulating agents may help regulate the inflammatory processes associated with
endometriosis. The idea here is to keep it as natural as possible, but sometimes prescription
medications may turn out to be necessary.

Please keep in mind that these treatment implications are based on current research, primarily
in the lab and animal models, and further studies are needed to validate their effectiveness and
safety in humans. Additionally, personalized approaches considering an individual’s specific
microbiota composition and disease characteristics may be necessary for optimal treatment
outcomes. It is exciting research in development and will be part of upcoming revolutionary
advances which take us far beyond hormonal manipulation for endo management. Since these
approaches are exploring the root cause of endo, treatments will likely be therapeutic as
opposed to simply something that reduces symptoms, which is the case with today’s hormonal
therapies.

The best part is that with proper expert guidance, much of the above can be used today
because, in most cases, the risk and cost are relatively low.

References:

Uzuner, C., Mak, J., El-Assaad, F., & Condous, G. (2023). The bidirectional relationship between
endometriosis and microbiome. Frontiers in Endocrinology, 14, 1110824. doi:
10.3389/fendo.2023.1110824

Moreno, I., Franasiak, J. M., & Endometrial Microbiome Consortium. (2020). Endometrial
microbiota—new player in town. Fertility and Sterility, 113(2), 303-304. doi:
10.1016/j.fertnstert.2019.10.031

1 year ago Endometriosis , Endometriosis Education , Endometriosis Mental Health No comment

Understanding Fatigue and Endometriosis: A Practical No-Nonsense Guide

Fatigue is a common symptom these days, but for those living with endometriosis, it can be
particularly challenging. While it’s not one of the primary symptoms of endometriosis, fatigue is
often reported by women who have endo. What’s the relationship? What are some potential
causes and what can you do to regain some lasting energy, without hocus pocus “cures”, more
coffee, or energy drinks?

If you’re not sure if you have endometriosis, please remember that not all symptoms are
directly related to or caused by endo. While many can be related, something else can be
wrong. For example, you can have anemia from various causes, adrenal or thyroid disease and
many other conditions, some of which can be serious. Chronic fatigue is a very challenging
condition to treat but before treatment you first must get to the root cause or causes. This
requires either a mainstream internal medicine or family medicine doctor that is going to
carefully explore every angle with you. Most will just get basis tests and not spend much time
with you, because their time is limited by today’s healthcare mess. Alternatively, seek out an
integrative and/or functional medicine physician who is trained to approach all disease by
tracing it down to the root cause. This is critical and not just a matter of getting a few blood
tests. If you’re “lucky” something obvious might pop up on basic testing. But most of the time
it’s not that straightforward. Do it right!

If you already know you have endo and are experiencing fatigue along with other symptoms of
endometriosis, make sure your endo specialist is aware of this. They can help evaluate how root
causes may be in play that are directly related to endo or adenomyosis, provide an accurate
diagnosis or diagnoses, and develop a personalized treatment plan. Everyone is not the same.

Understanding Fatigue and Endometriosis:

The Impact of Chronic Pain:

Endometriosis, in most, is characterized by chronic pelvic pain, which can significantly impact
quality of life. Living with constant pain can be exhausting both physically and mentally, leading
to fatigue. Additionally, the stress and emotional burden associated with chronic pain can
further contribute to fatigue.

Hormonal Imbalances:

Hormonal imbalances play a role in the development and progression of endometriosis.
Estrogen, in particular, is thought to promote the growth of endometrial tissue outside the

uterus. Fluctuations in estrogen levels throughout the menstrual cycle can result in fatigue and
tiredness. Furthermore, if you are in a hormone balancing program of some kind, excess
progesterone can definitely cause fatigue. “Balancing hormones” requires an expert hand
because it is like conducting a symphony orchestra, as opposed to throwing in a few hormones
to see what happens. Beyond that, it is not just a matter of balancing estrogen and
progesterone. For example, people with endometriosis are six times more likely to have an
underactive thyroid. So, again, it’s a symphony orchestra, not a small band that needs
conducting for best results.

Sleep Disturbances:

Endometriosis often leads to sleep disturbances due to pain, discomfort, and hormonal
imbalances. Insufficient or poor-quality sleep can easily leave one feeling fatigued during the
day. It is essential to prioritize sleep hygiene and seek strategies to improve sleep, such as
creating a relaxing bedtime routine and ensuring a comfortable sleep environment.

Anemia:

Endometriosis and adenomyosis can lead to heavy or prolonged menstrual and inter-menstrual
bleeding, which can result in iron deficiency anemia. Iron is vital for carrying oxygen to the
body’s tissues, and when its levels are low, fatigue and weakness can occur. Bringing iron levels
up may mean taking iron supplements for a while or it can as simple as adjusting your diet to
include iron-rich foods, like leafy veggies.

Inflammation and Immune Dysfunction:

Endometriosis is associated with chronic inflammation and immune system dysfunction. The
inflammatory response and immune activation can definitely contribute to fatigue. Strategies
that reduce inflammation, such as a healthy diet rich in anti-inflammatory foods, regular
exercise, and stress management techniques, may help alleviate fatigue symptoms.

Management Strategies for Fatigue:

Pain Management:

Effective pain management is essential for reducing fatigue associated with endometriosis. Your
doctor may recommend over-the-counter pain relievers, such as nonsteroidal anti-
inflammatory drugs (NSAIDs), to help alleviate pain and inflammation. Hormonal treatments,
such as birth control pills or hormonal intrauterine devices (IUDs), can also be prescribed to
regulate hormone levels and reduce pain. Of course, narcotics are an option but that can lead
to feeling loopy and fatigued, defeating the purpose. Gabapentin and similar drugs can help
with central sensitization and might be used just for transition while you reduce pelvic floor
inflammation triggers using multi-modality therapies. Pelvic floor physical therapy is critical.
Integrative modalities like acupuncture and acupressure can help as well. Endo excision surgery
is always part of the conversation and requires an expert to minimize the risk of multiple repeat
surgeries.

Lifestyle Modifications:

a. Regular Exercise: Engaging in regular exercise can improve energy levels and reduce fatigue.
It might be counter-intuitive to go out and exercise if you are already feeling beat, it works.
Even low-impact activities like walking, swimming, or practicing yoga can have a positive
impact. Start with light exercises and gradually increase intensity based on your comfort level.
Consult with a trainer or a physical therapist to determine the best exercise plan for you.

b. Balanced Diet: A well-balanced anti-inflammatory antioxidant diet plays a crucial role in
managing fatigue and supporting overall health. Incorporate a variety of fruits, vegetables,
whole grains (whole food plant-based diet), and lean proteins into your meals. These provide
essential nutrients which work together, including iron and other vitamins, which can help
combat anemia-related fatigue. Limiting processed foods, sugary snacks, and caffeine can also
promote more stable energy levels throughout the day. Given that endo is inflammatory and
the damage that is caused is based on reactive oxygen species oxidation, it is critical to keep
inflammation low and anti-oxidation high. Your body is a very complex laboratory which also
works like a symphony orchestra when tuned properly. It needs the right fuel, and an expert
nutritional “conductor” can help select and tune up the right plan for you.

c. Adequate Hydration: Drinking enough water throughout the day is important for maintaining
optimal energy levels. Dehydration can exacerbate fatigue, so aim to consume at least eight
glasses of water daily. Carry a refillable water bottle with you as a reminder to stay hydrated.
This is not directly related to endo but is a forgotten baseline critical need to maintain a slightly
alkaline, antioxidant and anti-inflammatory status.

Stress Management:

a. Mindfulness and Relaxation Techniques: Practicing mindfulness meditation, deep breathing
exercises, or progressive muscle relaxation can help reduce stress and improve energy levels.
Find a quiet and comfortable space and allocate a few minutes each day for relaxation
exercises. There is a lot of choose from including various forms of yoga, Tai Chi, Qigong,
mindfulness, biofeedback techniques like Heart Math, meditation and so on. These days there
are various mobile apps and online resources available to guide you through some these
techniques. But it is important to select something that resonates with you. If you are not “into
it”, it won’t help.

b. Engage in Activities You Enjoy: Participating in activities that bring you joy, and relaxation can
help alleviate stress and combat fatigue. Whether it’s reading, listening to music, taking a warm
bath, or spending time in nature, make time for activities that help you unwind and recharge.
Do something that makes you laugh. This all has psycho-biological proof behind it.

c. Prioritize Self-Care: Self-care is essential in managing fatigue and overall well-being. Set aside
regular time for self-care activities such as taking a bubble bath, getting a massage, practicing
gentle yoga, or indulging in a hobby you love. Remember that self-care looks different for
everyone, so find activities that resonate with you and make them a priority.

Support Networks:

a. Seek Emotional Support: Living with endometriosis is emotionally challenging. Connecting
with others who share similar experiences through support groups or online communities can
provide valuable emotional support, validation, and information. Sharing experiences, seeking
advice, and knowing you are not alone can help in managing fatigue and the overall impact of
endometriosis. Everyone is different and some of the solutions you hear about may not work
for you, but it is good to hear about them. The only prudent caveat might be that if something
sounds too good to be true in this setting, check it out through trusted credible sources and
your endo specialist.

b. Involve Loved Ones: Educate your loved ones about endometriosis and how it affects your
energy levels. Communicate your needs and limitations so that they can offer support and
understanding. Having a strong support system can make a significant difference in managing
fatigue and coping with the challenges of endometriosis.

c. Consider Counseling: If fatigue and the emotional impact of endometriosis are strongly
impacting your mental well-being, consider seeking professional counseling or therapy.
Everyone needs help at some point in their life. A mental health professional can provide
guidance, coping strategies, and a safe space to process your emotions.

Conclusion:

By implementing these management strategies, you can better cope with fatigue and improve
your quality of life. Remember that everyone’s experience with endometriosis is unique, and it
may take time to find the strategies that work best for you. Seek support from an
endometriosis specialist and other practitioners noted above, make lifestyle modifications,
prioritize self-care, and build a strong support network. Ideally, seek out an endo specialist who
is not only a surgeon but is also either trained in integrative holistic care or has a team that
provides these valuable support and treatment options. With the right tools and resources, you
can more effectively manage fatigue and navigate the challenges of living with endometriosis.

References:

Johnson NP, Hummelshoj L; World Endometriosis Society Montpellier Consortium. Consensus
on current management of endometriosis. Hum Reprod. 2013;28(6):1552-1568.

Nnoaham KE, Hummelshoj L, Kennedy SH, et al. World Endometriosis Research Foundation
Women’s Health Symptom Survey Consortium. World Endometriosis Research Foundation
global study of women’s health consortium. Fertil Steril. 2011;96(2):366-373.

Hadfield R, Mardon H, Barlow D, Kennedy S. Delay in the diagnosis of endometriosis: a survey of
women from the USA and the UK. Hum Reprod. 1996;11(4):878-880.

Vercellini P, Vigano’ P, Somigliana E, et al. Endometriosis: pathogenesis and treatment. Nat Rev
Endocrinol. 2014;10(5):261-275.

Ferrero S, Esposito F, Abbamonte LH, et al. Quality of life in women with endometriosis: a
narrative overview. Minerva Ginecol. 2019;71(6):464-478.

Mathias SD, Kuppermann M, Liberman RF, et al. Chronic pelvic pain: prevalence, health-related
quality of life, and economic correlates. Obstet Gynecol. 1996;87(3):321-327.

Hartwell D, Jones K, Hinshaw K, et al. Sleep disturbances and fatigue in women with
endometriosis. Am J Obstet Gynecol. 2019;221(6):638.e1-638.e14.

Vitale SG, La Rosa VL, Rapisarda AMC, et al. Impact of endometriosis on quality of life and
psychological well-being. J Psychosom Obstet Gynaecol. 2017;38(4):317-319.

Giudice LC. Clinical practice. Endometriosis. N Engl J Med. 2010;362(25):2389-2398.

La Rosa VL, De Franciscis P, Barra F, et al. Sleep quality in women with endometriosis: a
systematic review and meta-analysis. J Clin Med. 2020;9(6):1834.

Panir K, Schjenken JE, Robertson SA, et al. Immune interactions in endometriosis. Expert Rev
Clin Immunol. 2019;15(6):649-662.

Koga K, Takamura M, Fujii T, et al. Dysfunction of innate immune system in the development of
endometriosis. Reprod Med Biol. 2018;17(1):49-55.

Agarwal SK, Chapron C, Giudice LC, et al. Clinical diagnosis of endometriosis: a call to action. Am
J Obstet Gynecol. 2019;220(4):354.e1-354.e12.

1 year ago Endometrioma , Endometriosis , Endometriosis Education No comment

Understanding and Managing Endo Belly: A Comprehensive Guide

Endo belly is a term used to describe the painful abdominal bloating experienced by individuals with endometriosis. It is characterized by severe distension and discomfort, often resembling the appearance of pregnancy. This article aims to provide a comprehensive guide to understanding and managing endo belly, including its causes, symptoms, and treatment options. We will delve into the underlying mechanisms of endo belly, explore various management strategies, and discuss the importance of seeking medical advice for an accurate diagnosis and personalized treatment plan.

What is Endo Belly?

Endo belly refers to the extreme bloating and distension of the abdomen in individuals with endometriosis. Unlike mild and temporary bloating associated with the menstrual cycle, endo belly is more severe and can cause significant physical and emotional distress. It is often accompanied by pain, tenderness, and a feeling of fullness. Many individuals with endo belly describe their abdomen as looking pregnant, which can profoundly impact their self-image and overall quality of life.

The Causes of Endo Belly

The exact causes of endo belly are not fully understood, but there are several factors that contribute to its development. Endometriosis, a condition in which tissue similar to the lining of the uterus grows outside the uterus, plays a key role in the development of endo belly. The endometrial-like tissue can cause inflammation in the abdomen, leading to swelling, water retention, and bloating. Additionally, endometriosis can lead to the formation of ovarian cysts, which further contribute to abdominal distension. Gastrointestinal issues, such as constipation and gas, are also commonly associated with endometriosis and can contribute to the development of endo belly.

Symptoms of Endo Belly

The main symptom of endo belly is severe abdominal bloating, particularly during or before the menstrual period. The abdomen may feel tight, hard to the touch, and tender. Many individuals with endo belly report that their abdomen expands throughout the day, making it difficult to button their pants or wear fitted clothing. Other gastrointestinal symptoms, such as gas pain, nausea, constipation, and diarrhea, may accompany endo belly.

Diagnosis and When to Seek Medical Help

If you are experiencing severe and persistent abdominal distension or suspect that you may have endo belly, it is important to seek medical help for a proper diagnosis. Endo belly can mimic other health conditions, so consulting with a healthcare professional specializing in endometriosis or pelvic pain is crucial. The diagnostic process may involve:

• A pelvic exam.
• Imaging tests such as ultrasounds.
• A thorough evaluation of your symptoms and medical history.

Early diagnosis and intervention can lead to more effective management and improved quality of life.

Managing Endo Belly: Strategies and Treatment Options

Various strategies and treatment options are available to manage endo belly and alleviate its symptoms. The choice of treatment depends on the severity of symptoms and individual needs. Here are some approaches that can help:

• Pain Management

Nonsteroidal anti-inflammatory drugs (NSAIDs) can be used to manage pain and inflammation associated with endo belly. Over-the-counter NSAIDs, such as ibuprofen, can provide temporary relief. However, it is essential to consult with a healthcare professional before starting any medication.

• Hormonal Therapy

Hormonal therapy is commonly used to manage endometriosis symptoms, including endo belly. Birth control pills, hormonal patches, and intrauterine devices (IUDs) can help regulate hormonal fluctuations and reduce the growth of endometriosis tissue. Gonadotropin-releasing hormone (GnRH) agonists or antagonists may also be prescribed to suppress the production of certain hormones and alleviate symptoms.

• Dietary Changes

Making dietary changes can have a significant impact on managing endo belly. Avoiding trigger foods that can contribute to inflammation, such as caffeine, refined sugars, alcohol, and processed foods, may help reduce bloating and discomfort. Incorporating a diet rich in fruits, vegetables, lean proteins, and high-fiber options can promote gut health and reduce inflammation.

• Heat Therapy

Applying heat to the abdomen can provide relief from pain and muscle tension associated with endo belly. A hot water bottle or heating pad can be used to soothe cramps and relax the abdominal muscles. Heat stimulates sensory receptors, blocking pain signals and providing instant pain relief.

• Pelvic Floor Physiotherapy

Pelvic floor physiotherapy can be beneficial for individuals with endo belly. A pelvic floor physiotherapist can provide exercises and techniques to improve pelvic muscle strength and flexibility, alleviate pain, and promote proper alignment and breathing. Manual therapy techniques may also be used to release muscle tension and restore mobility.

• Surgical Intervention

In severe cases of endometriosis, surgical intervention may be necessary to remove endometrial tissue and alleviate symptoms. Laparoscopic surgery is often the preferred approach, as it is minimally invasive and allows for precise removal of endometriotic lesions and scar tissue. However, surgery is not a cure for endometriosis, and a comprehensive treatment plan should include other management strategies to address symptoms and prevent recurrence.

Coping with Endo Belly: Self-Care and Emotional Support

Coping with endo belly involves not only managing physical symptoms but also addressing the emotional impact it can have on individuals. Here are some self-care strategies and emotional support options to consider:

• Mindfulness and Meditation

Practicing mindfulness and meditation can help reduce stress and anxiety associated with endo belly. Deep breathing exercises and guided meditation can promote relaxation and provide a sense of calm.

• Support Groups and Counseling

Joining a support group or seeking counseling can provide a safe space to share experiences, seek guidance, and receive emotional support from others who understand the challenges of living with endo belly. Professional counseling can also help individuals navigate the emotional aspects of their condition and develop coping mechanisms.

• Body-Positive Practices

Embracing a body-positive mindset and practicing self-acceptance can help individuals with endo belly feel more confident and comfortable in their bodies. Wearing loose-fitting clothing, engaging in activities that promote body awareness and self-care, and reframing negative self-talk can contribute to a healthier body image.

Conclusion

Endo belly is a distressing symptom experienced by individuals with endometriosis. Understanding its causes, symptoms, and available management strategies is essential for effectively addressing this condition. Seeking medical help, implementing lifestyle changes, and exploring various treatment options can significantly improve the quality of life for individuals living with endo belly. Remember, each person’s experience with endo belly is unique, and finding a personalized approach to managing symptoms is key. With the right support, empowerment, and self-care, individuals with endo belly can navigate the challenges of this condition and live their lives to the fullest.

Additional Information: It is important to consult with a healthcare professional before implementing any treatment or management strategies mentioned in this article.

1 year ago Endometriosis , Endometriosis Education No comment

Finding an Endometriosis Specialist: Your Guide to Effective Treatment

Living with endometriosis can be an incredibly challenging experience. The chronic pelvic pain and other symptoms associated with this condition can profoundly impact a person’s daily life. If you suspect that you may have endometriosis, it is crucial to find an endometriosis specialist who can provide you with the proper diagnosis and treatment. This comprehensive guide will explore the significance of seeking a specialist, how to find the right doctor for you, and the key factors to consider during your search.

Understanding the Importance of an Endometriosis Specialist

Endometriosis is a complex condition requiring the expertise of a specialist with in-depth knowledge and experience in diagnosing and treating it effectively. While your family doctor or regular gynecologist may provide primary care, they may not possess the specialized skills required to manage endometriosis comprehensively. This is why seeking out an endometriosis specialist is essential. These specialists have a thorough understanding of the disease, including its symptoms, causes, and treatment options. They are equipped with the latest surgical techniques and have experience dealing with the complexities of endometriosis cases.

Read more: How are Endo Specialists Different than Typical Gynecologists?

Comprehensive Knowledge and Expertise

Endometriosis specialists possess a comprehensive understanding of the condition, including its underlying causes, symptoms, and potential complications. They stay updated with the latest research and advancements in the field, allowing them to offer the most current and effective treatment options. Their extensive knowledge ensures they can accurately diagnose endometriosis and develop personalized treatment plans tailored to each individual’s needs.

Surgical Skills and Techniques

Surgery is often a crucial component of endometriosis treatment, especially in cases where the condition has progressed or when conservative measures have proven ineffective. Endometriosis specialists are highly skilled in performing minimally invasive surgeries, such as laparoscopy, which allows for precise visualization and removal of endometriosis tissue. These specialists have mostly undergone additional training and certification in minimally invasive gynecologic surgery, ensuring they possess the necessary expertise to perform complex surgical procedures.

Read more: Red Flags About a Potential Endometriosis “Expert”

Complementary Approaches and Holistic Care

In addition to surgical interventions, endometriosis specialists also recognize the importance of a holistic approach to care. They understand that managing endometriosis involves more than just addressing physical symptoms. These specialists often work collaboratively with other healthcare professionals, including pelvic floor physical therapists, fertility specialists, counselors, pain specialists, massage therapists, and nutritionists. This multidisciplinary approach ensures that all aspects of a person’s well-being are addressed, promoting comprehensive and effective treatment.

Finding an Endometriosis Specialist

Now that we understand the significance of seeking out an endometriosis specialist, let’s explore some practical steps you can take to find the right doctor for you.

Find the best endometriosis specialists.

Step 1: Start with Your Current Healthcare Provider

Begin by discussing your symptoms and concerns with your primary care physician or gynecologist. They can provide valuable guidance, recommend specialists in your area, and facilitate the referral process. Your current healthcare provider may also have access to your medical history, which can help inform the specialist about your unique situation.

Step 2: Research and Referrals

Expand your search by conducting thorough research and seeking referrals from trusted sources. Online platforms like iCareBetter can be an excellent resource for finding vetted surgeons and endometriosis experts. Additionally, reach out to support groups or online communities dedicated to endometriosis. These communities often have members who can share their personal experiences and recommend healthcare providers in your area.

Step 3: Consider the Specialist’s Expertise

When evaluating potential endometriosis specialists, consider their areas of expertise and experience. Look for doctors who have a specific focus on endometriosis and have a track record of successfully treating this condition. Consider factors such as their surgical skills, knowledge of complementary approaches, and their willingness to listen and involve you in your healthcare decisions.

Step 4: Verify Certifications and Credentials

Ensure that the specialist you are considering has undergone additional training and maintains up-to-date knowledge in laparoscopic surgery.

Step 5: Establish a Connection

Building a strong doctor-patient relationship is crucial when managing a complex condition like endometriosis. During your initial consultation, pay attention to how the specialist communicates and interacts with you. Do they take the time to listen to your concerns? Do they explain complex medical terms in a way that you can understand? Trust your intuition and choose a specialist who makes you feel comfortable, heard, and supported.

Step 6: Check Insurance Coverage

Before finalizing your decision, ensure that your health insurance provider covers the specialist and any potential treatments or procedures they may recommend. Review your insurance policy or visit your provider’s website to determine the coverage options available to you. It is essential to understand the financial implications of your treatment plan to avoid any unexpected costs. Unfortunately, many top endometriosis specialists are out of network for your insurance, but you can still seek help from your insurance or other resources to have the funding to go through treatment.

Read more: What was your out-of-pocket cost for endometriosis surgery?

Taking Control of Your Endometriosis Journey

Finding an endometriosis specialist is a significant step towards taking control of your endometriosis journey. With their specialized knowledge, surgical expertise, and holistic approach to care, these specialists can provide the support and guidance you need to manage your condition effectively. Remember, seeking a second or third opinion is always an option if you feel uncertain or would like to explore different treatment approaches. Empower yourself with knowledge, trust your instincts, and never settle for anything less than the best care for your endometriosis.

2 years ago Endometriosis No comment

Understanding Cervical Endometriosis: Symptoms, Diagnosis, and Treatment

In endometriosis, cells that are similar to endometrium grow outside of it. A place that can have endometriosis is the cervix of the uterus.

Cervical endometriosis is a condition that can cause several different symptoms. Symptoms include spotting, pelvic pain, irregular periods, and bleeding or pain during sex. These symptoms can be difficult to diagnose as they can also indicate other conditions, but if you experience any of these, it is important to discuss them with your doctor.

While cervical endometriosis is rare, research has shown that it can impact the quality of life of individuals who experience it. This highlights the need for more research and awareness about this condition.

Diagnosis and Treatment:

There are several ways that cervical endometriosis can be diagnosed, including pelvic exams, Pap smears, colposcopy, and biopsy. It is important to note that the diagnosis of cervical endometriosis can be difficult. Your doctor might also suggest additional tests, including imaging scans or laparoscopic surgery.

Treatment options for cervical endometriosis vary depending on the severity of symptoms and fertility goals. Hormonal therapy, such as birth control pills, can be an effective way to manage cervical endometriosis. Surgery may be recommended if hormonal therapy is not enough to manage symptoms or if there is a desire for pregnancy.

Cervical endometriosis is a rare but significant condition that can impact the quality of life for many women. Treatment options vary and depend on individual needs and goals. It is essential to talk with your doctor about any symptoms you may be experiencing or if you have any concerns. Research efforts and awareness of cervical endometriosis are crucial to help those who experience this condition. Hopefully, this blog post has shed light on this important topic.

More resources:

How to Get an Endometriosis Diagnosis

Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery

A Guide to Endometriosis Surgery and Its Success Rate

2 years ago Endometriosis No comment

Living with Peritoneal Endometriosis: Symptoms, Causes, and Management

Endometriosis is a painful condition that affects millions of people worldwide. Endometriosis affects the peritoneum, the outer layer of tissue that lines the pelvic cavity. Peritoneal endometriosis can be a debilitating disease that can significantly affect a person’s quality of life, causing severe pain, inflammation, and infertility. This post will delve into the world of peritoneal endometriosis, discussing its symptoms, causes, and management options.

Peritoneal Endometriosis: The Hidden Condition You Need to Know About

Peritoneal endometriosis involves the peritoneum, the membrane that lines the abdominal cavity. This tissue can form lesions and nodules, leading to inflammation, pain, and infertility. There are two types of peritoneal endometriosis: pigmented or non-pigmented and superficial or deeply infiltrating. Pigmented endometriosis is characterized by dark-colored lesions, which can be easier to spot visually during surgery. Superficial peritoneal endometriosis is found on the surface of the peritoneum, while deeply infiltrating peritoneal endometriosis penetrates the tissue beneath the surface of the peritoneum.

The Hidden Epidemic: How Peritoneal Endometriosis Silently Impacts Millions

Peritoneal endometriosis is estimated to affect around 60-70% of individuals with endometriosis, making it the most common subtype of endometriosis. The symptoms of peritoneal endometriosis can significantly impact a person’s quality of life, leading to chronic pain, fatigue, and even depression. 

Hidden Triggers of Peritoneal Endometriosis: What Every Woman Needs to Know!

The exact cause of peritoneal endometriosis remains unknown, but several theories exist, including Coelomic metaplasia and retrograde menstruation.

Unlock the Secrets: How to Diagnose and Treat Infertility Fast!

Diagnosing peritoneal endometriosis can be challenging, as symptoms can be similar to other conditions, such as irritable bowel syndrome or pelvic inflammatory disease. Diagnosis often involves a medical history, physical examination, and imaging tests such as pelvic ultrasound. However, the most definitive way to diagnose peritoneal endometriosis is through laparoscopy, a surgical procedure allowing doctors to visualize the peritoneum directly and take biopsies if necessary.

The treatment of peritoneal endometriosis can depend on the severity of symptoms and a woman’s desire for fertility preservation. Treatment options include analgesics to relieve pain, hormonal therapy, and surgery to remove lesions or nodules. Hormonal treatment can consist of medications such as birth control pills or gonadotropin-releasing hormone agonists, which can be effective in reducing pain and inflammation. Surgery, meanwhile, can involve a laparoscopic procedure where the lesions or nodules are removed.

Peritoneal endometriosis can be a challenging condition to live with, affecting a woman’s physical, emotional, and social well-being. However, with the right diagnosis and management, women with peritoneal endometriosis can find relief and improve their quality of life. More research and awareness are needed to better understand this condition and develop effective treatments. If you suspect you may have peritoneal endometriosis, speak to your healthcare provider and seek appropriate medical attention. Remember, you are not alone, and there is help available.

More resources:

Managing Endometriosis: What You Need to Know 

2 years ago Endometriosis No comment

Understanding and Coping with Endometriosis Ovulation Pain

Endometriosis can significantly impact daily life, particularly during ovulation. While ovulation pain is common for many women, endometriosis often produces heightened discomfort and crampy pelvic pain. The following unpacks the nature of this pain, its symptoms, and provides many effective coping strategies.

What Does Ovulation Pain Feel Like?

Ovulation pain, also known as “mittelschmerz”, typically manifests as a sharp or cramping sensation in the lower abdomen. For those with endometriosis, this pain can be more intense and prolonged. Understanding the nature of this pain helps in identifying and managing it effectively. The sensation may vary from mild twinges to severe cramping, often localized to one side of the pelvis, or the other, depending on which ovary is releasing an egg (Hudson, 2016).

Symptoms and Duration of Ovulation Pain: How Long Does it Last?

Cramping during ovulation can vary from mild to severe, often accompanied by other symptoms such as nausea, bloating, and fatigue. The duration of ovulation pain can range from a few minutes to several hours, and in some cases, it may last for one or two days. Identifying these symptoms early can aid in better pain management. Women with endometriosis may also experience simultaneous back pain, headaches, and gastrointestinal issues during this period (Kosia et al., 2021). Tracking the duration and intensity of the pain can provide valuable insights for medical consultations. Keeping a pain diary can help in understanding patterns and triggers, which is essential for effective management (Taylor, 1995).

Mittelschmerz Symptoms

Mittelschmerz, the German term for “middle pain,” refers to ovulation pain occurring midway through the menstrual cycle. Symptoms include localized abdominal pain, often on one side, and can be accompanied by light vaginal bleeding or discharge. Women with endometriosis may experience exaggerated mittelschmerz symptoms, requiring more intensive management. Symptoms may also include sharp, intermittent pain that can sometimes radiate to the thighs and lower back (Pearlin & Schooler, 1978).

Nausea During Ovulation

Nausea is a much less commonly discussed symptom of ovulation, but it can occur, especially in women with endometriosis. Hormonal fluctuations and pain can contribute to feelings of nausea, impacting daily activities. Anti-nausea medications and dietary adjustments may be beneficial in managing this symptom (Mitchell et al., 2011).

Coping Strategies for Endometriosis and Ovulation Pain

1. Pain Management: Over-the-counter pain relievers can be effective. For severe pain, you may need stronger medications or hormonal treatments. Nonsteroidal anti-inflammatory drugs (NSAIDs), like ibuprofen, are often recommended for their efficacy in reducing inflammation and pain (Ostell, 1991).  However, the types of NSAIDs can also make a difference.  So review your NSAID pain options and select accordingly. 
2. Heat Therapy: Applying a heating pad to the lower abdomen can help relax muscles and reduce pain. Heat therapy is a simple yet effective method to alleviate cramping and discomfort. Be careful not to burn skin by interposing something, like a towel, between the heat pad source and the skin.  
3. Red Light Therapy: Red light therapy involves the use of low-level wavelengths of light to penetrate the skin and promote cellular function. This therapy can help reduce inflammation and pain associated with endometriosis and ovulation (Adamenko, 2020).
4. TENS Units: Transcutaneous Electrical Nerve Stimulation (TENS) units deliver small electrical impulses to the affected area, helping to block pain signals and promote the release of endorphins, which are natural pain relievers. TENS units can be particularly useful for managing chronic pain conditions like endometriosis (Putri & Kushartati, 2015).
5. Diet and Exercise: Maintaining a balanced diet and regular exercise routine can help manage symptoms. Foods rich in anti-inflammatory properties, such as leafy greens and fish, may alleviate pain. Regular physical activity can improve overall well-being and reduce the severity of symptoms (Kremer & Quednau, 2002).
6. Stress Reduction: Techniques such as yoga, meditation, and deep-breathing exercises can help reduce stress, which in turn can lessen pain intensity. Mindfulness practices have shown promise in managing chronic pain and improving quality of life.
7. Holistic and Integrative Approaches:
   • Herbals/Botanicals:
     • Turmeric: Known for its anti-inflammatory properties, turmeric can help reduce pain and inflammation.
     • Ginger: Another anti-inflammatory herb, ginger can help alleviate pain and nausea.
     • Vitex (Chaste Tree Berry): Often used for hormonal balance, it can help reduce symptoms of endometriosis (Kosia et al., 2021).
   • Aromatherapy:
     • Lavender: Known for its calming properties, lavender oil can help reduce stress and pain.
     • Peppermint: Can help alleviate nausea and headaches.
     • Clary Sage: May help balance hormones and reduce menstrual pain (Mitchell et al., 2011).
   • Acupuncture: This traditional Chinese medicine practice involves inserting thin needles into specific points on the body to relieve pain and promote healing. Acupuncture can help reduce the severity of ovulation pain and improve overall well-being (Davies, 1993).
8. Medical & Surgical Interventions: To get an accurate diagnosis, get to the root cause and treat endo-associated ovulatory pain, minimally invasive surgical options may be considered to excise endometriosis tissue and provide relief, which is often rapid. Hormonal therapies, such as birth control pills, gonadotropin-releasing hormone (GnRH) agonists, and progestin therapy, can help manage symptoms by regulating or halting menstruation but an produce many symptoms as side effects, some of which can be long-lasting.  The most prudent course of action is to consult and be under the care of an endometriosis specialist. 

Updated Post: July 09, 2024

2 years ago Endometriosis No comment

Everything You Need to Know About Umbilical Endometriosis

Endometriosis is a common yet often misunderstood condition that affects many people worldwide. While most people associate endometriosis with pelvic pain and menstrual issues, it can also manifest in unusual and unexpected parts of the body. One of those unusual locations is the umbilicus, or belly button, where endometrial cells can grow and cause a range of symptoms. In this blog post, we will delve into the world of umbilical endometriosis and explore its symptoms, causes, diagnosis, and treatment. Whether you have been recently diagnosed with umbilical endometriosis or are just curious about this condition, keep on reading to learn more.

Symptoms of Umbilical Endometriosis

Umbilical endometriosis can present differently in each person. However, there are some typical signs and symptoms that you should watch out for:

You may experience pain or discomfort in the belly button, which can range from mild to severe during or outside your period.

Your navel might appear swollen, red, or tender, especially if pressed.

You may notice bleeding or discharge from your belly button, which can be light or heavy and have a foul smell.

Some people with umbilical endometriosis might also have pelvic endometriosis and complain of painful sex, bowel movements, urination pain, infertility, or constipation.

Causes of Umbilical Endometriosis

The cause of umbilical endometriosis is not entirely clear and probably multifactorial. However, researchers have proposed a few mechanisms that might contribute to it. For instance, retrograde menstruation is when some menstrual blood flows backward instead of out of the body, which could transport endometrial cells to the umbilicus through the lymphatic or vascular system. Peritoneal metaplasia refers to the process of normal cells transforming into endometrial cells due to hormonal or environmental factors, which could occur near the umbilicus. Surgery-related umbilical endometriosis can result from accidental implantation of endometrial cells during laparoscopy or c-section.

Diagnosis and Treatment of Umbilical Endometriosis

If you suspect that you have umbilical endometriosis, the first step is to see a gynecologist who has experience with endometriosis. The doctor will likely examine your belly button, ask about your medical history and symptoms, and order some tests to confirm the diagnosis. These tests may include blood tests, imaging scans, like ultrasound or MRI, or a biopsy to remove a tissue sample for analysis. If the diagnosis is confirmed, you can discuss the best treatment options with your doctor. The treatment depends on the severity of your symptoms, age, desire for fertility, and overall health. The treatment may include pain relief medication, hormonal therapy, surgery, or a combination of these. Removing the endometrial tissue through surgery, like excision, is often the most effective and long-term solution for umbilical endometriosis.

Umbilical endometriosis is a rare yet significant manifestation of endometriosis that can cause discomfort, pain, and distress for affected patients. While the condition is not entirely understood, research has shed some light on possible causes and treatments. If you experience any of the symptoms we described earlier, do not ignore them or assume they are normal. Instead, seek medical advice from a specialist who can provide you with a proper diagnosis and treatment plan. Remember that you are not alone in this journey, and many people have successfully managed their umbilical endometriosis with the proper care and support.

2 years ago Endometriosis No comment

What is the Best Doctor to See for Endometriosis? A Comprehensive Guide

Endometriosis is a painful condition where tissue similar to the lining of the womb grows in other places in the body, such as the ovaries and fallopian tubes. It affects millions of people worldwide and causes a range of symptoms, including pelvic pain, heavy periods, pain during sex, and infertility. If you suspect you may have endometriosis, it’s essential to see the right doctor to get an accurate diagnosis and effective treatment. But who is the best doctor to see for endometriosis? In this blog, we’ll explore the different types of doctors who can help manage endometriosis and discuss the pros and cons of each approach.

Diagnosing and treating endometriosis:

Diagnosing endometriosis can be challenging, as symptoms can vary widely from person to person and can mimic other conditions such as irritable bowel syndrome or pelvic inflammatory disease. The gold standard for diagnosing endometriosis is laparoscopy, a minimally invasive surgery. However, before this step, your doctor will perform a pelvic exam and may order an ultrasound scan or MRI to assess your condition.

The first doctor you’ll likely see for endometriosis is a gynecologist, a doctor who specializes in female reproductive health. Gynecologists with great experience treating endometriosis have expertise in diagnosing and treating endometriosis. They can offer a range of treatments, such as pain management techniques, hormone therapy, and surgery to remove endometrial tissue. They can also provide advice on fertility preservation options for women who want to conceive in the future.

While seeing a gynecologist is essential for managing endometriosis, more is needed. Some patients may benefit from seeing additional specialists or seeking alternative therapies. For example, a physical therapist can help with spasms and other pelvic dysfunctions. A pain specialist can help manage the chronic pain associated with endometriosis, while a gastroenterologist can evaluate and treat any gastrointestinal symptoms. A urologist can address endometriosis-related bladder and urinary tract issues, while a psychologist can offer support for mental health concerns like anxiety or depression. Some patients may also benefit from seeing an integrative medicine practitioner who can help manage symptoms through traditional medicine and complementary therapies like acupuncture, yoga, or meditation.

Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery

While seeing multiple doctors can be overwhelming, it’s important to remember that endometriosis is a complex condition that requires a multi-disciplinary approach. Each specialist brings unique skills and expertise to the table, and working collaboratively with your healthcare team can improve your outcomes and enhance your quality of life.

In conclusion, gynecologists with experience in endometriosis are the first doctors to see for endometriosis. However, the most effective approach for treating endometriosis is to work with a team of specialists who can provide comprehensive care and support. A gynecologist is an essential part of this team and can offer diagnosis, treatment, and management of endometriosis symptoms. However, seeing additional specialists or exploring complementary therapies may benefit some patients. As always, it’s important to advocate for yourself and seek the care you need to live your best life with endometriosis.

2 years ago Endometriosis No comment

Understanding the Relationship between Sex and Endometriosis

Endometriosis is a painful condition that affects millions of women around the world. It occurs when tissue similar to the lining of the uterus grows outside of the uterus, causing inflammation, pain, and other symptoms. The pain can be so severe that it can affect women’s daily activities, including their sex lives. For many women, sex and endometriosis do not mix well. In fact, many women report that sex exacerbates their symptoms. In this blog post, we will explore the relationship between sex and endometriosis, explore some sex tips for managing endometriosis, and discuss the psychological and emotional effects of the condition.

How endometriosis can affect sex life

Endometriosis tissue can attach to the ovaries, fallopian tubes, or other pelvic organs and can cause pain, swelling, and sometimes infertility. It can cause pain during or after sex, painful periods, and chronic pain. This can make it challenging for women to enjoy their sexual partners or have comfortable sex. During sexual activity, endometriosis can cause pain, especially during deep penetration or certain positions. It can also cause pain during orgasms.

Read more: Endometriosis Pain after Orgasm: What You Need to Know

Pain during sex can be due to adhesions, scar tissue, or inflammation in the pelvic area. Endometriosis tissue can also grow in the vagina or cervix, making intercourse painful. In addition, vaginal dryness can exacerbate the problem, and many women taking hormone medicines for endometriosis may experience a decrease in libido, which can further affect their sex drives.

Ways to manage pain from endometriosis

If you are struggling with painful sex due to endometriosis, there are things you can do to manage your symptoms. Firstly, you should communicate with your partner about your symptoms and pain levels. This can help your partner know how to support you and modify sex positions to ease the pain. Additionally, you can try different positions to find the ones more comfortable for you. Lubricants and non-penetrating sexual acts might also be some strategies to think about.

Endometriosis can also affect women’s emotional and psychological health, leading to depression, anxiety, and other mental health issues. This can further affect women’s sex lives by reducing their interest in sex, increasing their fear or anxiety during sex, and making it difficult to enjoy intimacy. It is important to seek professional help if you are experiencing any mental health issues related to endometriosis. Counseling, therapy, or medication can help you manage your emotional and psychological symptoms, leading to a healthier sex life.

In addition to planning sexual activity, you can also manage pain from endometriosis by using pain-relieving medications or hormone therapy. Your doctor may also recommend surgery to remove endometriosis tissue or other affected organs. 

Sex and endometriosis may not always mix well, and many women may find it difficult to enjoy intimacy due to pain and other symptoms. However, with the right communication, management strategies, and emotional support, women with endometriosis can still have a satisfying sex life. It is important to communicate with your partner, try different positions, and seek professional help if the condition affects your emotional and psychological health. Remember, endometriosis does not define your worth or your ability to enjoy intimacy. With the right support, you can still have meaningful, fulfilling relationships and happy sex lives.

Read more:

5 Signs You Need to See a Gynecologist

Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery

2 years ago Endometriosis No comment

Endometriosis and Pelvic Pain Floor Dysfunction

Pelvic pain and abnormal pelvic floor muscle (PFM) tension are common among individuals with endometriosis and can persist even after surgical removal of endometriosis lesions. Since endometriosis is a hormonally dependent, inflammatory disease that affects several physiological systems, multiple factors could contribute to chronic pelvic pain (CPP). 

Pain management methods that target myofascial pain are becoming more popular among practitioners since myofascial sources could continue to cause CPP even after surgical and hormonal treatment. Pelvic pain can also result from musculoskeletal disorders that may go unnoticed during a traditional pelvic exam. Screening the inferolateral pelvic floor musculature during a routine pelvic exam is useful for identifying spasms and trigger points contributing to, or resulting from, a patient’s pelvic pain. 

Nonrelaxing pelvic floor dysfunction may present with nonspecific symptoms such as pain, and problems with defecation, urination, and sexual function, which can adversely affect the quality of life. Proper evaluation can facilitate the diagnosis of spasms or trigger points, and physical therapy often significantly improves the quality of life in these cases.

Pelvic pain in women with different stages of endometriosis can be strongly associated with bladder/pelvic floor tenderness and painful bladder syndrome, independent of endometriosis-related factors. This suggests the involvement of myofascial or sensitization pain mechanisms for some patients suffering from deep dyspareunia. Pelvic floor physical therapy (PT) has proved to be helpful in women with myofascial or pelvic floor pain. This type of PT aims to release tightness in muscles by manually “releasing” it; treatment is directed at the abdomen, vagina, hips, thighs, and lower back muscles. This requires a specially trained physical therapist.

It is imperative for women to recognize and treat pelvic pain with physical therapy and other interventions to alleviate pain and improve their quality of life.

References:

• Aredo, J. V., Heyrana, K. J., Karp, B. I., Shah, J. P., & Stratton, P. (2017, January). Relating chronic pelvic pain and endometriosis to signs of sensitization and myofascial pain and dysfunction. In Seminars in reproductive medicine (Vol. 35, No. 01, pp. 088-097). Thieme Medical Publishers. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5585080/ 
• Weiss, P. M., Rich, J., & Swisher, E. (2012). Pelvic floor spasm: the missing link in chronic pelvic pain. Contemporary OB/GYN. Retrieved from https://www.contemporaryobgyn.net/view/pelvic-floor-spasm-missing-link-chronic-pelvic-pain 
• Faubion, S. S., Shuster, L. T., & Bharucha, A. E. (2012, February). Recognition and management of nonrelaxing pelvic floor dysfunction. In Mayo Clinic Proceedings (Vol. 87, No. 2, pp. 187-193). Elsevier.  Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0025619611000243 
• Orr, N. L., Noga, H., Williams, C., Allaire, C., Bedaiwy, M. A., Lisonkova, S., … & Yong, P. J. (2018). Deep dyspareunia in endometriosis: Role of the bladder and pelvic floor. The journal of sexual medicine, 15(8), 1158-1166.  Retrieved from https://dl.uswr.ac.ir/bitstream/Hannan/73785/1/2018%20JSM%20Volume%2015%20Issue%208%20August%20%283%29.pdf  
• Tu, F. & As-Sanie, S. (2019). Patient education: Chronic pelvic pain in women (Beyond the Basics). Retrieved from https://www.uptodate.com/contents/chronic-pelvic-pain-in-women-beyond-the-basics/print 
• Hunt, J. B. (2019). Pelvic Physical Therapy for Chronic Pain and Dysfunction Following Laparoscopic Excision of Endometriosis: Case Report. Internet Journal of Allied Health Sciences and Practice, 17(3), 10. Retrieved from https://nsuworks.nova.edu/cgi/viewcontent.cgi?article=1684&context=ijahsp 

2 years ago Endometriosis No comment

Sciatic Nerve Endometriosis: Uncommon or Not?

Sciatic nerve endometriosis is widely considered a rare occurrence, but leg pain in patients with endo is relatively common, up to 50%.  Why?  Is it being underdiagnosed?  Since endometriosis itself is often misdiagnosed or diagnosed years after initial symptoms, the true incidence of direct and indirect sciatic nerve symptoms caused by endo is also suspect. 

The sciatic nerve is located very deep within the pelvis but not inside the intraperitoneal area where the uterus is situated. Instead, the sciatic nerve is found in the “retroperitoneum,” the deep anatomic region behind the peritoneum, containing bones, muscles, and major nerves. It exits the pelvis right behind the Piriformis muscle, which is part of the pelvic floor. 

Endometriosis mainly involves intraperitoneal pelvic structures and organs such as the bladder, cul-de-sac, large and small bowel sections, uterus, ovaries, and Fallopian tubes.  In advanced cases, it can extend into the midline retroperitoneum by involving the recto-vaginal septum.  However, endometriosis has been identified in atypical and distant locations by unclear means of spread, and a certain percentage is deeply infiltrating.  In the latter case, the retroperitoneum, sciatic nerve, and pelvic floor muscles are anatomically very close and vulnerable to direct deep infiltration or indirect spread (e.g., lymphatic system).   The precise prevalence of endometriosis that grows outside the pelvic intraperitoneal cavity by location, including the sciatic nerve area, remains to be discovered due to the limited number of published studies on the subject. 

Symptoms:   

Lower back, leg, and buttock pain, which may or may not extend down your leg, may indicate the presence of direct sciatic endometriosis or indirect inflammation-related pressure on the nerve. The symptoms may be the same or very similar since the endometriosis is either directly growing and pressing on or involving the sciatic nerve or leading to pelvic floor inflammation and scarring, which also affect the sciatic (and other nerves) and trigger pain signals.  The latter is typically called Piriformis syndrome.  

Sciatic endometriosis may or may not be uncommon. Still, it must always be included in the “differential diagnosis” (identifying root causes of symptoms) of pain and signs in the region or area where sciatic nerve sensation fibers are known to extend. 

Testing and Diagnosis:

Lab tests are generally not helpful in diagnosing sciatic endometriosis. A CA-125 level (an ovarian cancer tumor marker) or hsCRP (generalized inflammatory marker) can be elevated in endometriosis due to inflammation but are not specific for endometriosis, let alone sciatic nerve involvement. 

Arguably the best imaging study for possible endo-related extraspinal sciatica is the MRI.  It may reveal whether an endo lesion is directly growing in or around the nerve, most frequently at the sciatic notch, or compressing it, such as inflammation causing Piriformis syndrome. However, unless endometriosis has already been confirmed from prior surgery, these scans will only sometimes help diagnose endo or endometriosis-related sciatica. But the running message is this.  Given the diagnostic uncertainty of endometriosis, extra pelvic symptoms should never be dismissed as unrelated when an endo diagnosis is being considered.

Symptoms and Findings:

Pain may or may not be cyclical, similar to rectal pain caused by endometriosis. It may start before menstruation and persist for several days after a period has ended. The pain may be accompanied by motor deficits (weakness or gait/walking issues), foot drop, and discomfort or tingling radiating down the back of the leg from the buttock. Walking, especially long distances, may exacerbate these symptoms. Deep buttock tenderness may also be present, specifically in the area of the sciatic notch where the sciatic nerve passes. If left untreated, sciatic endometriosis may lead to long-term nerve damage, as any prolonged direct pressure or inflammation around a major nerve can cause this.

A doctor or pelvic floor therapist may identify “deficits” (abnormalities) in the sciatic nerve distribution during a physical examination. For example, Lasègue’s test, which is a straight leg raise test when lying on your back, may point to sciatic involvement by endo.  Localized deep tenderness over the sciatic notch might also be present, although it can be difficult to reproduce. On the other hand, a regular pelvic exam may be normal, depending on the extent of endometriosis in the pelvis.  

Treatment of Sciatic Endometriosis:

The treatment of sciatic endometriosis will most likely begin with surgery. In fact, it may be the only definitive treatment. But this is not always the case.  Endometriosis excision of an endometriosis lesion in this area is the gold standard, just as in other areas.  But if direct sciatic involvement by endo is suspected, choosing the right surgeons is especially crucial. The sciatic nerve is located so deep within the pelvis that a general gynecologist most likely has never encountered it during surgery. Endo-excision surgeons do not typically operate in this retroperitoneal area either. Gynecologic oncologists, who often work on lymph nodes or remove cancer in the region, are more likely to be familiar with the anatomy. However, if the nerve is more likely to be directly affected by endo based on imaging, a neurosurgeon should also be part of the team. Therefore, a gynecologic oncologist and/or an endo excision surgeon very experienced in advanced endo and a neurosurgeon are likely the best options for this aspect of endometriosis excision surgery.

Given that some percentage of endo-related sciatica may be due to pelvic floor inflammation and dysfunction, as opposed to direct endo growth on or near the nerve, pelvic floor physical therapy is worth trying first.  If it is effective and if imaging does not show evidence of deep infiltrating endo that might be directly involving the sciatic nerve, then radical and more risky retroperitoneal surgery to get to that area may be safely deferred.  

In cases where direct involvement is suspected and surgery is not immediately feasible, a short-term medical treatment regimen with anti-inflammatory and possibly anti-estrogenic properties may be beneficial. Adopting an anti-inflammatory diet may also help. Pelvic floor physical therapy and medical support therapy, including vaginal Valium, may offer additional temporary benefits. The bottom line is that treatment for pain along sciatic nerve distribution should be tailored to each individual’s needs and integrated into a comprehensive, personalized medical-surgical treatment plan.  

The first confirmed case of sciatic endometriosis was reported in 1946 by Schlicke. The primary takeaway from this fact is that sciatic endometriosis has been a known entity for over half a century.  Since then, other cases have been documented in medical journals.  However, overall, it is still considered a rare condition. But given the percentage of endo patients who report leg pain, this may not be so, especially when endo-induced Piriformis syndrome is added to the mix.  If endometriosis has already been diagnosed or strongly suspected and sciatic nerve distribution pain is part of the symptoms, a consultation with an expert who focuses on advanced endometriosis patients may save you a lot of grief.   

References:

Yanchun, L., Yunhe, Z., Meng, X., Shuqin, C., Qingtang, Z., & Shuzhong, Y. (2018). Removal of an endometrioma passing through the left greater sciatic foramen using a concomitant laparoscopic and transgluteal approach: case report. BMC Women’s Health, 19(1), 95.

Missmer SA, Bove GM. A pilot study of the prevalence of leg pain among women with endometriosis. J Bodyw Mov Ther. 2011; 15:304–308.

Osório, F., Alves, J., Pereira, J., Magro, M., Barata, S., Guerra, A., & Setúbal, A. (2019). Obturator internus muscle endometriosis with nerve involvement: a rare clinical presentation. Journal of Minimally Invasive Gynecology, 25(2), 330-333.

Possover, M.  Laparoscopic morphological aspects and tentative explanation of the aetiopathogenesis of isolated endometriosis of the sciatic nerve: a review based on 267 patients   Facts Views Vis Obgyn. 2021 Dec; 13(4): 369–375.

S. Chen, W. Xie, J. A. Strong, J. Jiang, and J.-M. Zhang. Sciatic endometriosis induces mechanical hypersensitivity, segmental nerve damage, and robust local inflammation in rats. Eur J Pain. 2016 Aug; 20(7): 1044–1057.

Lemos, N., D’Amico, N., Marques, R., Kamergorodsky, G., Schor, E., & Girão, M. J. (2016). Recognition and treatment of endometriosis involving the sacral nerve roots. International Urogynecology Journal, 27(1), 147-150.

Vilos, G.A., Vilos, A. W., & Haebe, J. J. (2002). Laparoscopic findings, management, histopathology, and outcomes in 25 women with cyclic leg pain. The Journal of the American Association of Gynecologic Laparoscopists, 9(2), 145-151.

T Ergun, H Lakadamyali. CT and MRI in the evaluation of extraspinal sciatica. Br J Radiol. 2010 Sep; 83(993): 791–803.

2 years ago Endometriosis No comment

Spotting the Signs of Endometriosis Returning

Endometriosis is a painful and challenging condition. While there is no cure for this condition, treatments are available to manage the symptoms, making it easier for patients to lead healthy lives. However, endometriosis can recur, and it is crucial to identify the signs and symptoms to avoid complications. In this post, we will discuss the symptoms of endometriosis recurrence and how to spot them early enough so you can seek medical attention.

Painful Periods

One of the signs of endometriosis returning is pain during your period. This pain can range from minor discomfort to excruciating cramps that require you to take painkillers. If you notice that your periods are more painful than usual or that the pain increases over time, it may be a sign that your endometriosis is returning. Keep a record of your symptoms, including any changes in frequency, intensity, and duration of your period, so you can discuss them with your doctor.

Pelvic Pain

Another sign of endometriosis recurrence is persistent pelvic pain or discomfort. This pain can be mild, moderate, or severe and may come and go, depending on hormonal fluctuations. Some patients may also experience pain during sex or ovulation. If you notice persistent pelvic pain, scheduling an appointment with your doctor to discuss your treatment options is essential.

Fatigue

Endometriosis can cause fatigue due to the pain and stress that comes with the condition. If you notice that you are more exhausted than usual, despite enough rest, it could be a sign that your endometriosis is returning. Speak with your doctor and seek support from a therapist or counselor to manage the mental impact of endometriosis.

Gastrointestinal Symptoms

Endometriosis can affect the digestive system, causing symptoms such as bloating, constipation, or diarrhea. These symptoms may worsen during or after your period, and they may not improve with changes to your diet or bowel habits. If you notice gastrointestinal symptoms, mentioning them to your doctor is essential, as they may be a sign of endometriosis recurrence.

Other Symptoms for Endometriosis Recurrence

Endometriosis presents itself in many ways. We mentioned some of it here, but there are undoubtedly many other symptoms that can help diagnose the recurrence of endometriosis. You should keep track of your well-being and mention any unusual symptoms or abnormalities to your doctor.

Endometriosis can cause severe pain and discomfort and impact your quality of life. While timely diagnosis and treatment can help manage the symptoms and prevent complications, there are risks of recurrence after surgery. The signs of recurrence are pelvic pain, period pain, fatigue, gastrointestinal symptoms, and other symptoms. If you notice any signs of endometriosis returning, speak with your doctor.

Please share the signs of endometriosis returning that you had experienced.

2 years ago Endometriosis No comment

Managing Stress with Endometriosis: A Guide for Patients

Endometriosis is a chronic condition that affects approximately 10% of women between 15-50 and other genders. This condition is characterized by the growth of tissue similar to endometrium outside of the uterus, leading to painful menstrual cramps, heavy bleeding, and infertility. Living with endometriosis can be extremely challenging due to its physical and emotional toll on an individual. Stress can exacerbate symptoms of endometriosis and make coping with the condition even more difficult. In this blog post, we will discuss the effects of stress on endometriosis and provide some tips on managing stress for individuals with this condition.

Stress is a common issue that affects patients with endometriosis. When you experience stress, your body releases the hormone cortisol, which can trigger inflammation and potentially exacerbate endometriosis symptoms. Stress also affects our immune system, making fighting diseases and infections harder for our bodies. To help manage stress, it’s essential to develop healthy coping mechanisms. Some practical techniques include meditation, yoga, deep breathing, or guided imagery.

Exercise is another effective way to manage stress and improve endometriosis symptoms. Physical activity has been shown to release endorphins, which are natural painkillers, and reduce inflammation. However, it’s essential to be cautious when exercising if you have endometriosis. High-impact activities like running or jumping can trigger pain and discomfort. Instead, try low-impact exercises like swimming, walking, or cycling.

It’s also essential to pay attention to what you eat when managing endometriosis and stress. A diet rich in anti-inflammatory foods can help reduce inflammation and improve endometriosis symptoms. Include foods like leafy greens, berries, fatty fish, and nuts in your diet to provide your body with the necessary nutrients. Avoid caffeine, sugar, and processed foods that can exacerbate inflammation and trigger hormonal imbalances.

Getting enough sleep is also essential for managing stress and endometriosis. Lack of sleep can lead to fatigue, mood swings, and anxiety. Try to establish a regular sleep schedule and avoid using electronic devices before bed, as they can disrupt your sleep pattern. Creating a relaxing bedtime routine, like taking a warm bath or reading a book in bed, can help promote a peaceful sleep environment and reduce stress.

Finally, seeking support from others can help alleviate stress and improve endometriosis symptoms. Talking to a therapist can provide you with tools to manage stress and emotional challenges. Joining a support group or online community can also help you connect with other people who experience similar challenges and find comfort in sharing experiences.

Living with endometriosis can be challenging, but managing stress can help alleviate symptoms and improve the overall quality of life. Incorporating healthy habits like exercise, a nutritious diet, and stress-reducing activities into your everyday routine can reduce anxiety and inflammation and promote physical and emotional wellness. Remember that you are not alone in this journey, and seeking support from others can help alleviate stress and provide you with the necessary tools to manage endometriosis.

Read more: Managing Endometriosis

2 years ago Endometriosis No comment

Understanding Thoracic Endometriosis

As a patient, you may already know that endometriosis is not just painful periods. Endometriosis, an inflammatory condition where endometriosis lesions can be found on tissues and organs in the abdomen and pelvis as well as elsewhere in the body, is relatively common, affecting an estimated 10% of women. However, these lesions are not isolated to the abdominopelvic cavity; they can also be found within the thoracic cavity, encompassing the lungs and diaphragm.  Endometriosis in the thoracic cavity is called thoracic endometriosis or thoracic endometriosis syndrome (TES).

Thoracic endometriosis is not as uncommon as is often assumed; it is likely underdiagnosed. Some of the symptoms one may experience are right shoulder blade or neck pain (90% of the pain presentation is on the right side), chest pain and shortness of breath, especially around menses (your period), coughing up blood, as well as lung collapse. Many sources suggest it impacts people in the 3rd and 4th decades and in those who have previously had a diagnosis of endometriosis. That being said, this may not be entirely accurate, but it is characteristic of those who’ve been diagnosed. If you have been experiencing unexplained chest pain or breathing difficulties, this may be caused by thoracic endometriosis. In this blog, we will explain what thoracic endometriosis is, what causes it, and how it can be treated.

The Manifestations: Decoding the Symptoms

Thoracic endometriosis is a master of disguise, often masquerading as other respiratory ailments, making it challenging to diagnose and treat effectively. The symptoms can range from subtle discomforts to life-threatening emergencies, and their cyclical nature, often coinciding with menstruation, is a telltale sign of this elusive condition.

Catamenial Pneumothorax: A Breath-Stealing Complication

One of the most alarming manifestations of thoracic endometriosis is catamenial pneumothorax, a condition where air leaks into the space between the lungs and the chest wall, altering the pressure differential and resulting in a collapsed lung. This complication occurs in approximately 73% of thoracic endometriosis cases and can lead to symptoms such as:

• Shortness of breath
• Chest pain
• Shoulder pain (often on the right side)
• Cough

The term “catamenial” refers to the cyclical nature of this condition, with the pneumothorax typically occurring within 72 hours of the onset of menstruation.

Catamenial Hemothorax: A Bloody Accumulation

Another manifestation of thoracic endometriosis is catamenial hemothorax, a condition where blood accumulates in the pleural space (the area between the lungs and the chest wall). This complication, while less common than catamenial pneumothorax, can still cause significant distress, with symptoms such as:

• Cough
• Shortness of breath
• Chest pain

Catamenial hemothorax predominantly affects the right side of the chest, although rare cases of left-sided involvement have been reported.

Catamenial Hemoptysis: Coughing Up Blood

In some cases, thoracic endometriosis can manifest as catamenial hemoptysis, a condition where the individual coughs up blood or experiences blood in their sputum. This symptom is relatively uncommon, occurring in only 7% of thoracic endometriosis cases, but it can be a distressing and potentially life-threatening complication.

Pulmonary Nodules: Unexpected Growths

Thoracic endometriosis can also present as pulmonary nodules, which are atypical growths in the lungs. These nodules can range in size from 0.5 to 3 cm and may or may not be accompanied by symptoms such as:

• Cough
• Shortness of breath
• Chest pain

While rare, accounting for only 6% of thoracic endometriosis cases, these nodules can be mistaken for more serious conditions, such as lung cancer, adding to the diagnostic challenge.

What Causes Thoracic Endometriosis?

The exact cause of thoracic endometriosis is still unknown. However, there are several theories that suggest it may be caused by:

Endometrial-Derived theories 

Commonly referred to as retrograde menstruation, the long-standing theory that endometrial cells are refluxed during menses, then morph into an endometriosis cell. From there, it is believed that this tissue can migrate to the thoracic cavity through congenital or acquired diaphragmatic fenestrations (openings) or via lymphatic or vascular dissemination. While this theory existed for a long time, there are likely better explanations to explain the presence of endometriosis.

Coelomic Metaplasia Theory

Another theory, known as the coelomic metaplasia theory, proposes that endometriosis lesions can arise from the transformation of mesothelial cells lining the pleura and peritoneal surfaces. This theory attempts to explain the presence of endometriosis in individuals without a functional endometrium, such as those with Mayer-Rokitansky-Küster-Hauser syndrome or men receiving high-dose estrogen therapy.

Prostaglandin Theory

The prostaglandin theory suggests that the cyclical nature of thoracic endometriosis symptoms may be linked to the increased production of prostaglandin F2α during menstruation. This potent constrictor of bronchioles and vasculature is believed to cause alveolar rupture and subsequent air leakage, potentially leading to conditions like catamenial pneumothorax.

The Lymphovascular Spread

Theory suggests that the endometrial cells can latch onto lymph nodes or vessels, which then transport them to the thoracic cavity.

The Diagnostic Journey: Overcoming the Challenges

Diagnosing thoracic endometriosis can be a daunting task, often involving a series of investigative steps and a high degree of clinical suspicion.

Imaging Modalities: Shedding Light on the Unseen

Several imaging techniques can aid in the diagnosis of thoracic endometriosis, including:

• Chest X-rays: While not specific, chest X-rays can reveal pneumothoraces, pleural effusions, or pulmonary nodules, raising suspicion for thoracic endometriosis.
• Computed Tomography (CT) scans: CT scans can provide detailed images of the lungs, revealing endometrial implants, pulmonary nodules, or diaphragmatic lesions.
• Magnetic Resonance Imaging (MRI): MRI is particularly useful in detecting diaphragmatic endometriosis, with a reported sensitivity of 78% to 83%.

However, it is important to note that imaging findings can be nonspecific, and a definitive diagnosis often requires further investigation.

Bronchoscopy and Tissue Sampling: Seeking Direct Evidence

While bronchoscopy and tissue sampling techniques, such as brush cytology or bronchial washings, have a limited diagnostic yield due to the peripheral location of endometrial implants, they can be valuable tools in certain cases. For instance, bronchoscopy performed within 1 to 2 days of the onset of menses may increase the chances of detecting endometrial tissue.

The Gold Standard: Video-Assisted Thoracoscopic Surgery (VATS)

The gold standard for diagnosing thoracic endometriosis is video-assisted thoracoscopic surgery (VATS), a minimally invasive procedure that allows direct visualization of the lungs, diaphragm, and pleural surfaces. During VATS, surgeons can identify and biopsy endometrial implants, diaphragmatic lesions, or other abnormalities, providing definitive evidence of thoracic endometriosis.

The Multidisciplinary Approach: Collaborative Care for Optimal Outcomes

Given the complexity of thoracic endometriosis and its potential involvement in both the thoracic and pelvic cavities, a multidisciplinary approach to treatment is often recommended. This collaborative effort typically involves the expertise of gynecologic and thoracic surgeons who are well-versed in the intricacies of endometriosis.

How Can Thoracic Endometriosis Be Treated?

Medical Management: Hormonal Therapy as the First Line

The initial therapies that may be used in general for endometriosis may be hormonal therapies for symptom management and are not treatments for endometriosis. Common medications used in this approach include:

• Gonadotropin-releasing hormone (GnRH) analogs
• Oral contraceptives
• Progestins
• Aromatase inhibitors
• GnRH antagonists

While these medications may provide symptom relief, they do not eliminate endometriosis, and they also may not work for everyone, moreover, the recurrence rate after discontinuing treatment can be as high as 60% within 12 months.

Surgical Intervention: A Multidisciplinary Endeavor

Surgical intervention is the only intervention that can actually remove the lesion, but it is still not a definitive treatment as recurrence is not uncommon, even with the best surgery.  

This surgery typically involves a combined approach, with video laparoscopy performed by a gynecologic surgeon to address pelvic endometriosis and video-assisted thoracoscopic surgery (VATS) conducted by a thoracic surgeon to treat thoracic lesions.

During VATS, surgeons can employ various techniques, including:

• Excision or ablation of the endometriosis lesions  on the lungs or diaphragm
• Resection of affected lung tissue or diaphragmatic fenestrations
• Pleurodesis (mechanical or chemical) to prevent recurrent pneumothoraces

Additionally, diaphragmatic defects or perforations may be repaired using endoscopic staplers or synthetic mesh, depending on the extent of the lesions.

Combination Therapy: Maximizing Outcomes

In many cases, a combination of surgical intervention and postoperative hormonal suppression therapy may be recommended to reduce the risk of disease recurrence. This multimodal approach has been shown to improve long-term outcomes and minimize the likelihood of symptom relapse.

The Elusive Diagnosis: Raising Awareness and Empowering Patients

Despite its potentially debilitating consequences, thoracic endometriosis often remains an elusive diagnosis, with many women experiencing a delay in receiving appropriate care. This delay can be attributed to various factors, including:

• Nonspecific symptoms that can be mistaken for other respiratory conditions
• Lack of awareness among healthcare providers about the manifestations of thoracic endometriosis
• Difficulty in establishing a clear link between symptoms and menstrual cycles

To address these challenges, raising awareness among both healthcare professionals and patients is crucial. Educating women about the potential manifestations of thoracic endometriosis and encouraging them to advocate for themselves can lead to earlier diagnosis and more timely interventions.

Thoracic Endometriosis and Fertility: Navigating the Challenges

For women with thoracic endometriosis who desire to conceive, the condition can present additional hurdles. While thoracic endometriosis itself does not directly impact fertility, it is often accompanied by pelvic endometriosis, which can contribute to infertility or subfertility.

In such cases, a comprehensive evaluation and treatment plan involving gynecologic and thoracic specialists is essential. Addressing both the pelvic and thoracic components of endometriosis may improve the chances of successful conception and a healthy pregnancy.

The Psychosocial Impact: Acknowledging the Emotional Toll

Living with thoracic endometriosis can take a significant emotional toll on individuals as they navigate the physical discomforts, diagnostic challenges, and treatment complexities associated with this condition. The cyclical nature of symptoms, often coinciding with menstrual cycles, can further exacerbate feelings of frustration, anxiety, and isolation.

It is crucial for healthcare providers to acknowledge and address the psychosocial impact of thoracic endometriosis, offering support and resources to help patients cope with the emotional challenges. Support groups, counseling, and mind-body therapies can be valuable tools in promoting overall well-being and resilience.

The Road Ahead: Ongoing Research and Future Perspectives

While our understanding of thoracic endometriosis has advanced significantly in recent years, there is still much to be explored and uncovered. Ongoing research efforts are focused on:

• Elucidating the precise mechanisms underlying the development and progression of thoracic endometriosis
• Improving diagnostic techniques for earlier and more accurate detection
• Developing novel therapeutic approaches, including targeted therapies and minimally invasive surgical techniques
• Exploring the potential role of genetics and environmental factors in the etiology of thoracic endometriosis
• Investigating the long-term consequences and impact on quality of life

By fostering collaboration among researchers, clinicians, and patient advocates, we can continue to advance our understanding of this enigmatic condition and pave the way for better outcomes and improved quality of life for those affected by thoracic endometriosis.

Conclusion: Embracing Hope and Resilience

Thoracic endometriosis, while not rare but often unrecognized, is a condition that demands our attention and compassion. By raising awareness, promoting early diagnosis, and embracing a multidisciplinary approach to treatment, we can empower individuals affected by this condition to reclaim their health and well-being.

Through ongoing research, innovative therapies, and a commitment to patient-centered care, we can navigate the challenges posed by thoracic endometriosis and offer hope and resilience to those who face this enigmatic journey.

References : 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4116267

https://www.medicalnewstoday.com/articles/thoracic-endometriosis

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684338

https://endometriosis.net/living/thoracic-endo

https://www.topdoctors.co.uk/medical-articles/thoracic-endometriosis-explained

Updated: September 4, 2024

2 years ago Endometrioma , Endometriosis , Endometriosis Education No comment

Breaking the Cycle: Understanding Endometrioma Recurrence After Surgery

Endometriomas, commonly known as ovarian “chocolate cysts,” occur in 20 to 40% of endometriosis patients. Abnormal implantation and growth of endometrial-like tissue can cause these cysts to form on the ovaries, which can cause more pain, discomfort, and fertility issues. With each cycle, the cyst bleeds into itself, just like what occurs typically inside the uterus.  Except that uterine endometrial tissue is expelled during menses vaginally, whereas endometriotic blood is trapped inside the ovarian cyst and with each cycle, the cyst slowly gets larger.  So, this blood also becomes old and turns brown over the years, resembling chocolate.  While surgery can be an effective treatment for endometriomas, the recurrence of these cysts after surgery is a common problem. We will explore why this occurs and what can be done to reduce the risk of recurrence. 

Several factors contribute to the recurrence of endometriomas after surgery. One of the main factors is the nature of the condition itself. The presence of endometriomas may signal more aggressive endo disease, and this chronic and progressive inflammatory disease on the ovary can continue to grow. Endometriosis tissue might be left behind after surgery because it can be buried deep in the ovary and even be microscopic.  So, the nature of the disease is to grow back in various parts of the ovary, superficial and deep. 

Surgically removing an ovary will certainly prevent endo from growing back in that area and that was the standard approach for many decades. However, in recent years, there has been a shift towards more conservative surgical techniques for treating endometriomas. These techniques aim to remove as much of the endometriosis tissue as possible while preserving as much of the ovary as possible. This is called a cystectomy and is often used for the removal of other ovarian cysts such as dermoids (teratomas) or cystadenomas (benign ovarian tumors).  The problem is that, unlike these other cysts, endometriomas are more inflammatory and the edges are irregular, so they do not easily separate from ovarian tissue.  So, microscopically incomplete removal is common even if it appears that the entire cyst was removed.  

Another surgical factor contributing to recurrence is rupture of the endometriotic cyst during the surgical removal. Rupture can release not only old blood but also endometriosis cells and tissue into the pelvis.  It’s crucial to repeat that it is not just old blood that is spilled.  This can lead to a higher risk of recurrence of endo on the ovary and elsewhere because these spilled cells can create new implants.

Here is an important side note. Although rare, endo can degenerate into a type of cancer or increase the risk of ovarian cancer.  The older you are and the more there is a concerning family history, the more an atypical looking endometrioma may be more than that.  If an early cancer is ruptured, the treatment can be more difficult.  How rare? It is on the order of 1% or less increased risk.  But given that there are millions of women with endo, even a fraction of 1% means thousands at risk.  If you are at higher risk due to age, genetics, or family history, especially if the imaging shows the endometrioma is not typical, getting a consult with a gynecologic oncologist may be prudent. 

A study published in the Journal of Minimally Invasive Gynecology found that the recurrence rate for endometriomas was significantly higher in cases where the cyst had ruptured during surgery than cases where the cyst was removed intact. The study found that the recurrence rate for ruptured cysts was 50%, compared to a recurrence rate of 8% for intact cyst removal.   

Having said all the above, while it seems like removing the endometrioma intact is a no-brainer strategy, this is far easier said than done.  As we mentioned before, these cysts do not readily separate from the ovary, can be stuck to surrounding structures like the uterus or bowel, and can be very thin walled.  So, even in a skilled surgeon’s hands, this often leads to inadvertent rupture.  But read on.  There are still things an expert surgeon can do to minimize this risk of rupture and spill inside the pelvis. So, spoiler alert #1 is to make sure you are under the care of an expert endometriosis surgeon.  But there is more to it, much more. 

Non-Surgical Recurrence Factors

Endometriomas are largely estrogen-dependent, meaning that they grow and spread in response to the hormone estrogen.  So, suppose at least one of the ovaries is left behind. In that case, the estrogen can stimulate growth of any endometriosis tissue left behind on the ovary or anywhere else that any endo implants may be hiding.  

To address this main hormonal non-surgical risk factor, there are several proactive steps that women can take to reduce endo recurrence. One of the most important steps is maintaining a healthy lifestyle, reducing total estrogen. This includes eating a healthy diet, getting regular exercise, reducing stress, using probiotics to metabolize excess estrogen, and avoiding exposure to toxins that can act as xenoestrogens. These steps can help to balance estrogen and progesterone in the body and reduce the risk of endometriosis growth and recurrence.

In many cases, pharmaceutical hormone therapy may be recommended to reduce the risk of recurrence. However, hormone therapy is not suitable for everyone and may have serious side effects.  Work with an endo specialist on this. 

There is much more to the non-surgical risk for recurrence and other proactive steps can be taken.  I

Surgical Innuendoes

Laparoscopy has been a standard for endometriosis surgery for over 40 years.  It was invented almost a hundred years ago, but video cameras achieved acceptable quality only during the latter part of the 20^th century.  While this is still the standard bearer for most endo surgery, the more complex the surgery the more one can strongly argue that a 2-dimensional camera (no depth perception) and instruments that are like inflexible chopsticks with graspers and scissors at the end are just too clunky and plain inadequate for finesse meticulous surgery.    

Robotic surgery is a newer surgical tool and technique that has become increasingly popular over the past decade, with very good reasons.  It is minimally invasive, just like laparoscopy and the incisions are just as hidden in expert surgeons’ hands.  However, this technique involves the use of several robotic arms that are controlled by a surgeon to perform minimally invasive surgery.  This is where the magic happens. The robotic arms are equipped with exchangeable tiny instruments that wrist or flex like human hands and a magnified 3-D camera, which allows incredibly precise visualization and depth perception.  Also, even the slightest tremor in a surgeon’s hand is not transmitted to the instrument like it is in regular laparoscopy.  In fact, with traditional laparoscopy, any tremor or inadvertent motion of the surgeon’s hand is amplified at the instrument tip.   So robotic surgery translates into less trauma to the body, more accurate dissection, and less blood loss, all of which may mean faster recovery.   For simple cases, there may not be much of a difference.  But, unfortunately, it is not possible to predict what might be found in the pelvis until the surgery actually starts.  So, having the robotic equipment available and an expert surgeon in its use is quite helpful to cover all options.      

One of the key advantages of robotic surgery for treating endometriomas is that, in expert hands, it may allow for more complete removal of lesions, especially endometriomas. This is simply because the robotic camera and equipment are more precise and technologically far superior to laparoscopic equipment. Of course, at the end of the day, in most cases, the level of expertise of the surgeon trumps equipment.  But in any given complex and anatomically distorted surgical situation an uber expert in robotics will likely fare better than an uber expert in laparoscopy.   

In advanced endo, endometriomas are often stuck to each other in the middle (“kissing ovaries”), pulling the rectum up into an inflammatory mess.  Deeper they are also stuck to the uterosacral ligaments supporting the uterus, which also pulls the ureters dangerously close to harm’s way (a few millimeters at most).  Removing these endometriomas intact and avoiding damage to the rectum or ureters requires both an uber good surgeon and the very best technology, which is embodied in robotics.  Suppose the surgeon is good at retroperitoneal surgery (deep tissues behind the peritoneum where the ureters are). In that case, it is possible to mobilize the whole ovary or ovaries up out of the pelvis without rupture.  Then, even if it appears that removing endometriomas might result in rupture (extreme inflammation), a special containment bag can be placed underneath to catch the fluid and endometriosis cells in the event of a rupture.  Finally, if all else fails, a very controlled evacuation of an endometrioma using specialized suction equipment is better than overt rupture.  Unfortunately, most surgeons, even some advanced surgeons, are incapable of or do not routinely employ these steps.  The result is higher risk of recurrence if there is uncontrolled spill. 

In conclusion, the rupture of endometriomas during surgical removal can significantly increase the risk of recurrence. Careful and precise surgical techniques, such as those used in robotic surgery, may help to reduce the risk of cyst rupture and subsequent recurrence. However, other factors, such as hormonal imbalances, the presence of endometrial implants, and lifestyle and environmental factors, should also be considered when developing a treatment plan. 

Get in touch with Dr. Steve Vasilev

References

Roman H, Auber M, Marpeau L, et al. Recurrence of ovarian endometriomas: risk factors and predictive index. Hum Reprod. 2011;26(9):2489-2497. doi: 10.1093/humrep/der230.

Pakrashi T, Madden T, Zuna RE, et al. Recurrence Rates After Robotic-Assisted Laparoscopic Surgery for Endometriosis: A Single-Center Experience. J Minim Invasive Gynecol. 2016;23(5):755-761. doi: 10.1016/j.jmig.2016.04.008.

Donnez, J., & Spada, F. (2016). New concepts in the diagnosis and treatment of endometriosis: from surgery to chronic disease management. Fertility and Sterility, 105(3), 552-559. doi: 10.1016/j.fertnstert.2016.01.002.

American College of Obstetricians and Gynecologists. (2019). Endometriosis. Retrieved from https://www.acog.org/womens-health/faqs/endometriosis

American Society for Reproductive Medicine. (2019). Management of endometriomas. Fertility and Sterility, 112(2), 319-327. doi: 10.1016/j.fertnstert.2019.05.001.

Niu, F. (2019). Risk factors for recurrence of ovarian endometrioma after laparoscopic excision. Journal of Minimally Invasive Gynecology, 26(3), 517-523. doi: 10.1016/j.jmig.2018.07.018.

Pearce, C. L., Templeman, C., Rossing, M. A., Lee, A., Near, A. M., Webb, P. M., … & Cramer, D. W. (2012). Association between endometriosis and risk of histological subtypes of ovarian cancer: a pooled analysis of case–control studies. The Lancet Oncology, 13(4), 385-394. doi: 10.1016/S1470-2045(11)70335-7. 

Vercellini, P., Viganò, P., Somigliana, E., & Fedele, L. (2014). Endometriosis: pathogenesis and treatment. Nature Reviews Endocrinology, 10(5), 261-275.

Young, V. J., Ahmad, S. F., & Duncan, W. C. (2017). The role of apoptosis in the pathogenesis of endometriosis: a systematic review of the literature. Journal of reproductive immunology, 123, 81-85.

Zhang, T., De Carolis, C., & Manerba, M. (2016). Endometriosis: Novel insights into pathogenesis and new therapeutic approaches. CRC Press.

2 years ago Endometriosis No comment

What You Need to Know About Endometriosis and Intimacy

Endometriosis is a common health condition that affects millions of women, primarily in their reproductive years. This condition can cause extreme pain, cramping, and fatigue and affect a woman’s intimate relationships. While painful intercourse is a common symptom, it’s crucial to understand that a fulfilling sexual life is achievable with the right approach and open communication. People diagnosed with endometriosis need to understand its effects on their intimate lives and how to manage these symptoms.

Understanding the Connection Between Endometriosis and Painful Intercourse

Endometriosis occurs when the endometrial-like tissue implants on tissues and organs throughout the body, often on the ovaries, fallopian tubes, bowel and bladder, or other organs. These implants are mediated by hormones resulting in inflammation, scarring, and the formation of adhesions or cysts.

These growths can lead to dyspareunia, the medical term for pain during sexual intercourse. The discomfort may manifest as sharp, stabbing sensations, deep pelvic aches, or a dull, throbbing sensation before, during, or after intimacy. The severity and location of the pain can vary depending on the extent and positioning of the endometriosis lesions.

Factors Contributing to Painful Intercourse

Several factors can contribute to dyspareunia in individuals with endometriosis:

• Endometriosis Lesions: The presence of these growths, particularly around the cervix or deep within the pelvis, can cause discomfort during penetration or specific sexual positions due to their innervation.
• Inflammation: These lesions produce inflammatory substances, which can lead to pelvic pain and tenderness, exacerbating discomfort during sexual activity.
• Scarring and Adhesions: Over time, endometriosis can cause the formation of scar tissue and adhesions, which can restrict movement and cause pain during intercourse.
• Hormonal Imbalances: Most commonly, the use of birth control, often recommended as the “first-line therapy,” impacts the hormonal balance in the vulvovaginal tissues, which can contribute to vaginal dryness, inflammation, and pain in the vulva, further increasing the likelihood of painful intercourse.

It’s essential to note that not all individuals with endometriosis experience painful sex, and the severity of symptoms can vary significantly from person to person.

The Effects of Endometriosis on Intimacy

Endometriosis can hurt physical intimacy in many ways. The pain associated with the condition can make it difficult for some women to be comfortable enough for sex at any time. And the accompanying fatigue can leave them feeling too tired for sex. In addition, endometriosis often causes pelvic inflammation, which can make penetration painful or even impossible.

The emotional toll of endometriosis can also take its toll; depression and anxiety may arise due to physical pain or fear that sex will be painful. While the physical aspects of endometriosis can be challenging, the emotional toll it can take on intimate relationships should not be overlooked. 

Feelings of guilt, frustration, and low self-esteem are common among those who experience pain during sex.

Addressing the Emotional Impact of Endometriosis on Intimacy 

Fostering Open Communication

Open and honest communication with one’s partner is crucial in navigating the emotional landscape of endometriosis and its impact on intimacy. Partners should feel comfortable discussing their needs, concerns, and preferences without fear of judgment or dismissal. This can create a supportive environment for exploring alternative forms of intimacy.

Seeking Professional Support and Guidance

Working closely with healthcare professionals, such as gynecologists, pelvic floor therapists, and mental health experts, offers a holistic approach to managing endometriosis and its effects on intimacy. These specialists can create personalized treatment plans and provide coping strategies, communication tools, and ways to nurture a healthy, fulfilling intimate relationship despite the challenges of endometriosis. Additionally, pelvic floor and sex therapists offer valuable guidance in addressing intimacy concerns and tailoring advice and techniques to individual needs. Their expertise is key in reducing discomfort and improving the quality of intimate relationships for those impacted.

Mental health experts, on the other hand, play a crucial role in supporting individuals with endometriosis, particularly in addressing the emotional and psychological impact it can have on intimacy. Endometriosis often brings chronic pain, fatigue, and hormonal imbalances, all of which can strain personal relationships and diminish one’s sense of self-worth or desire for intimacy. Mental health professionals, such as therapists or counselors, provide a safe space to discuss these challenges, offering coping strategies to manage anxiety, depression, and the emotional burden associated with endometriosis. They can assist in fostering a positive mindset, helping to rebuild confidence and body image, which can be deeply affected by the condition. 

Seeking Support from Loved Ones and Support Groups

Surrounding oneself with a supportive network of loved ones and others who understand the challenges of endometriosis can be invaluable. Support groups, both in-person and online, can provide a sense of community, shared experiences, and practical advice for navigating intimacy and other aspects of life with endometriosis.

Seeking Medical Treatment

In addition to lifestyle adjustments, seeking appropriate medical treatment for endometriosis can. Treatment options may include hormonal therapies, pain management strategies, or surgical interventions, depending on the individual’s circumstances and goals.

Timing Sexual Activity

Many individuals with endometriosis find that certain times of the month are more comfortable for sexual activity. Tracking menstrual cycles and identifying pain-free periods can help plan intimate encounters when discomfort is less likely.

Exploring Alternative Positions

Certain sexual positions may exacerbate pain or discomfort due to the location of the lesions or scarring. Experimenting with different positions, such as those that allow for shallower penetration or minimize pressure on sensitive areas, can help reduce pain and enhance pleasure. Utilizing tools such as the “Oh Nut” by The Pelvic People can empower individuals to explore pleasure without pain. 

Incorporating Lubrication and Pain Relief

Vaginal dryness, a common issue associated with endometriosis, can contribute to painful intercourse. Using lubricants or vaginal moisturizers can alleviate discomfort and improve sexual experience. Additionally, over-the-counter pain relievers, taken before sexual activity, may help manage discomfort.

Embracing Non-Penetrative Intimacy

While penetrative sex may be challenging for some individuals with endometriosis, there are numerous ways to maintain intimacy and sexual connection without penetration. Exploring sensual massage, mutual masturbation, oral stimulation, and other forms of physical intimacy can foster closeness and pleasure without exacerbating pain.

Creating a supportive and understanding environment can greatly enhance the intimate experience for individuals with endometriosis and their partners.

Patience and Flexibility

Embracing patience and flexibility can help navigate the challenges posed by endometriosis. Allowing time for exploration, experimentation, and adaptation can lead to a more fulfilling and satisfying intimate experience for both partners.

Building Self-Confidence and Body Positivity

Endometriosis can take a toll on self-confidence and body image, which can negatively impact intimate relationships. Engaging in self-care practices, such as mindfulness, affirmations, or seeking support from others with similar experiences, can help foster a positive self-image and improve overall well-being.

Managing Stress and Anxiety

The physical and emotional challenges associated with endometriosis can contribute to increased stress and anxiety levels. Incorporating stress-management techniques, such as deep breathing exercises, meditation, or engaging in enjoyable activities, can help alleviate these feelings and promote a more positive mindset.

Endometriosis and Fertility Considerations

For individuals with endometriosis who desire to conceive, the impact of the condition on fertility can be a significant concern. Open communication with healthcare providers and exploration of fertility treatment options, if necessary, can help address these concerns and provide guidance on maintaining a healthy intimate relationship while pursuing family-building goals.

Integrating Complementary Therapies

In addition to conventional medical treatments, incorporating complementary therapies, such as acupuncture, yoga, or dietary modifications, may help alleviate endometriosis symptoms and promote overall well-being.

Prioritizing Self-Care and Lifestyle Adjustments

Adopting a self-care routine and making lifestyle adjustments, such as regular exercise, stress management techniques, and a balanced diet, can contribute to better symptom management and improved overall health, potentially enhancing intimacy and sexual well-being.

Conclusion

Living with endometriosis does not have to mean living without physical intimacy—it just means finding new ways of managing its effects on your relationships. Talking openly with your partner about how it affects you, practicing self-care, and talking with your doctor about treatments available are all great ways of managing the symptoms associated with endometriosis and fostering healthy intimacy in relationships while living with this condition. By embracing a holistic approach that addresses physical, emotional, and psychological aspects, seeking appropriate medical treatment, and cultivating a supportive environment, individuals with endometriosis can overcome the obstacles posed by this condition and prioritize their overall well-being and sexual health.

Remember, you are not alone in this journey. Seeking support from healthcare professionals, support groups, and loved ones can provide invaluable guidance and encouragement as you navigate the intimate aspects of life with endometriosis.

References:

https://www.everydayhealth.com/endometriosis/boost-sex-life

Endometriosis and sex: What you need to know for a healthy sex life

https://www.medicalnewstoday.com/articles/321417

https://www.endometriosis-uk.org/endometriosis-and-couples

https://www.elanzawellness.com/post/endometriosis-and-sex-navigating-intimacy-and-pain

Updated: September 6, 2024

2 years ago Endometriosis No comment

All You Need to Know About Endometriosis Lesions

Understanding Endometriosis

Endometriosis is a perplexing chronic inflammatory condition that affects millions of individuals worldwide and is characterized by endometrial-like lesions implanted on tissues and organs throughout the abdomen and pelvis, even elsewhere in the body! These lesions contain glands and stroma, similar to the endometrium (the tissue that lines the uterine walls), causing chronic inflammatory reactions. 

What Are Endometriosis Lesions?

Endometrial lesions, also known as endometriotic implants or pelvic lesions, are the hallmark of endometriosis. These lesions are composed of endometrial-like tissue that has been implanted and grown in areas outside the uterus, primarily within the pelvic cavity. They usually range from 1 cm to 5 cm in size and can appear in different colors, such as red, white, or blue spots, making their identification and treatment a complex challenge.

 Appearance and Characteristics

Endometrial lesions come in various forms, each with its own unique characteristics:

1. Color: These lesions can range from clear or white to brown, black, blue, or red hues, with some resembling powder burns or gunshot wounds.
2. Location: While endometrial lesions predominantly occur in the pelvic region, they can also develop on or around reproductive organs like the ovaries, fallopian tubes, bladder, intestines, and rectum. In rare cases, they have been found in distant areas like the brain, liver, lungs, or eyes.
3. Size and Depth: Endometrial lesions can vary in size, from small, flat patches to raised nodules or deep, invasive growths. Their depth is a crucial factor in determining the severity of the condition and the appropriate treatment approach.

Types of Endometrial Lesions

Based on their location, depth, and invasiveness, endometrial lesions can be classified into three main categories:

• Superficial Peritoneal Lesions

Superficial peritoneal lesions are the most common type, accounting for approximately 80% of all endometrial lesions. These lesions are small, flat, or raised patches found on the peritoneum, the membrane lining the abdominal cavity and covering the reproductive organs.

• Endometriomas (Ovarian Endometriosis)

Endometriomas, also known as chocolate cysts, are a type of cyst that develops within the ovaries. These lesions form when endometrial tissue bleeds into the cysts, creating a thick, dark-brown fluid resembling melted chocolate.

• Deep Infiltrating Endometriosis (DIE)

Deep infiltrating endometriosis (DIE) is an aggressive form of the condition, where endometrial lesions grow deeply into the peritoneum, reaching a depth of 5 millimeters or more. These lesions often appear as nodules or growths within the affected tissue and can cause severe pain and complications.

Symptoms and Impact

The symptoms of endometriosis can vary widely among individuals, ranging from mild discomfort to debilitating pain and infertility. Common symptoms include:

• Chronic pelvic pain, often worsening during menstrual periods
• Heavy or irregular menstrual bleeding
• Pain during intercourse
• Painful bowel movements or urination
• Gastrointestinal issues like diarrhea, constipation, nausea, or bloating
• Fatigue and exhaustion
• Infertility or difficulty conceiving

These symptoms can significantly impact an individual’s quality of life, affecting their ability to work, study, or engage in daily activities. Endometriosis has also been linked to emotional distress, depression, and anxiety, further compounding the challenges faced by those affected.

Diagnosis and Staging

Diagnosing endometriosis can be a complex process, as there is no single definitive test to confirm the condition. Healthcare providers typically rely on a combination of methods, including:

1. Medical History and Physical Examination: Evaluating symptoms, menstrual patterns, and conducting a pelvic examination can provide valuable clues about the presence of endometriosis.
2. Imaging Tests: Techniques like ultrasound or magnetic resonance imaging (MRI) can help visualize endometrial lesions, cysts, or other abnormalities in the pelvic region.
3. Laparoscopy: This minimally invasive surgical procedure involves inserting a small camera through a small incision in the abdomen, allowing direct visualization and biopsy (tissue sampling) of suspected endometriosis lesions.

Once diagnosed, endometriosis is staged based on the location, size, and depth of the lesions, as well as the presence of adhesions or scarring. The American Society for Reproductive Medicine (ASRM) has established a staging system ranging from Stage 1 (minimal) to Stage 4 (severe).

Treatment Options

Once you’ve been diagnosed with endometriosis lesions, your doctor will likely recommend one or more treatments depending on your symptoms’ severity. While there is no definitive cure for endometriosis, various treatment options are available to manage symptoms and improve quality of life. The choice of treatment depends on factors such as the severity of symptoms, the individual’s age, and their desire for future fertility.

Non-Surgical Treatments

Pain Management

Over-the-counter pain medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen, can help alleviate the pain and discomfort associated with endometriosis. In some cases, prescription-strength pain relievers or muscle relaxants may be recommended.

 

Hormone Therapy

Hormonal treatments aim to regulate the menstrual cycle and suppress the growth of endometrial lesions. These therapies may include:

• Birth Control Pills: Combination birth control pills containing estrogen and progesterone can help regulate hormonal levels and reduce pain and bleeding.
• Gonadotropin-Releasing Hormone (GnRH) Agonists and Antagonists: These medications temporarily suppress ovarian function, creating a menopausal-like state and reducing the production of estrogen and progesterone.
• Progestins: Progestin-only medications, such as the birth control pill or intrauterine device (IUD), can help regulate menstrual cycles and alleviate symptoms.

Complementary and Alternative Therapies

Some individuals with endometriosis may find relief through complementary and alternative therapies, such as acupuncture, chiropractic care, herbal supplements (e.g., vitamin B1, magnesium, omega-3 fatty acids), or topical pain-relieving creams and gels.

Surgical Treatments

In cases where non-surgical treatments are ineffective or the endometriosis lesions are causing significant complications, surgery may be recommended.

• Laparoscopic Surgery: Also known as minimally invasive surgery, is a common approach for treating endometriosis. During this procedure, a surgeon inserts a small camera and surgical instruments through tiny incisions in the abdomen to remove or destroy endometrial lesions.

• Hysterectomy and Oophorectomy: In severe cases or when fertility is no longer desired, a hysterectomy (removal of the uterus) or oophorectomy (removal of the ovaries) may be recommended, though is not a treatment for endo. Typically this is recommended if adenomyosis is present and endo has severely impacted the uterus and ovaries. 

It’s important to note that endometrial lesions can recur even after successful surgical treatment, and regular follow-up appointments with a healthcare provider are essential for monitoring and managing the condition.

Endometriosis and Fertility

Endometriosis is a leading cause of infertility, affecting up to 50% of individuals struggling with fertility issues. The presence of endometrial lesions, adhesions, and scarring can impair ovulation, disrupt the release of eggs from the ovaries, or obstruct the fallopian tubes, preventing fertilization.

For individuals with endometriosis who wish to conceive, fertility treatments such as ovulation-inducing medications, intrauterine insemination (IUI), or in vitro fertilization (IVF) may be recommended. In some cases, surgical intervention to remove endometrial lesions or restore the patency of the fallopian tubes may improve fertility outcomes.

Coping and Support

Endometriosis can be a physically and emotionally challenging condition, and seeking support is crucial for managing the associated stress and anxiety. Here are some strategies that can help individuals cope with endometriosis:

• Support Groups: Joining a local or online support group can provide a sense of community, allowing individuals to share experiences, advice, and emotional support with others facing similar challenges.
• Counseling and Therapy: Seeking counseling or therapy can help individuals develop coping mechanisms, manage stress and anxiety, and address the emotional impact of endometriosis.
• Self-Care: Engaging in self-care activities like exercise, meditation, or relaxation techniques can help alleviate stress and promote overall well-being.

Education and Advocacy: Learning about endometriosis and advocating for increased awareness and research can empower individuals and contribute to a better understanding of the condition.

Endometriosis Awareness and Research

Despite its prevalence, endometriosis remains a widely misunderstood and under-researched condition. Raising awareness and promoting education about endometriosis is crucial for improving early diagnosis, access to treatment, and overall quality of life for those affected.

Additionally, ongoing research efforts aim to uncover the underlying causes of endometriosis, develop non-invasive diagnostic methods, and explore new treatment options that can effectively manage symptoms without compromising fertility.

By fostering a supportive community, increasing awareness, and advancing research, individuals with endometriosis can look forward to a future with improved management strategies and a better quality of life.

 

References: 

https://www.verywellhealth.com/endometriosis-lesions-6385828

https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656

https://www.hopkinsmedicine.org/health/conditions-and-diseases/endometriosis

https://www.who.int/news-room/fact-sheets/detail/endometriosis

Updated: August 12, 2024

2 years ago Endometriosis No comment

The Endometriosis Roller Coaster: Understanding Recurrence and How to Prevent It

The Endometriosis Roller Coaster: Understanding Recurrence and How to Prevent It

Surgery is a cornerstone for initial diagnosis of endometriosis and is an effective treatment option. But, it is not a guaranteed cure, because endometriosis can recur after surgery.  What? Why? 

The reasons for endo recurrence are complex and multifactorial and involve a combination of factors.  These include incomplete removal of the endometriosis tissue, hormonal imbalances, immune influences, toxin influences, molecular influences and probably even more we still do not fully understand. So, while thorough and meticulous initial excision is key, a poor excision is not the only reason for recurrence and progression.  Let’s look at these factors in more detail, and, more importantly, explore what you might be able to proactively do to help reduce the recurrence risk.   

Incomplete Excision:

Incomplete removal of endometriosis lesions is probably the most common cause of recurrence after surgery.  Endo can be difficult to remove completely, especially if it has grown deep into the pelvic tissues and organs, and if an affected uterus and/or ovaries are being preserved. Of course, expert surgeons are trained to optimize excision and minimize recurrence.  But in some cases, the remaining lesions can be obscured by inflammation or microscopic and not visible to the surgeon, making it difficult or impossible to remove no matter what level skillset the surgeon has.  If even a small amount of endometriosis is left behind after surgery, it can and probably will grow back over time.  The more that is left behind, potentially the faster it may grow back.  However, this is not a linear growth relationship because of the factors we explore below.  Some lesions simply grow slower than others for various reasons, and some might not grow at all to a symptom-producing level.   

So, what can be done to improve the chances of initially optimal surgery?  We’ll explore the pros and cons of available tools below.  But first, what about the surgeon?  Depending on your situation and resources available to you, some combination of advanced surgeons will be key to your treatment in most cases. The details about your options are as follows.   

Published research generally favors excision (removal) over fulguration (burning) of endometriosis implants, especially in deep infiltrating endo and for endometriomas. While there is some debate over this, fulguration near delicate structures like the ureters or bowel can be very unsafe and fulguration generally causes more scarring or fibrosis.  Fibrosis itself may increase pain as your body heals, even if all the endo itself was destroyed.  

So, the first step is to make sure that your potential surgeon is trained and capable of excision surgery and not just fulguration.  There are a number of pathways to this.  General gynecologists that are trained to perform thorough excisions are very far and few between.  So the trail leads to gynecologists that have had additional training in excision and minimally invasive surgery.  Who are they?  

Most advanced endo excision surgeons have trained in a one to three year minimally invasive surgery or “MIGS” fellowship. These are not regulated or accredited by any boards but are usually sponsored by the AAGL (American Association of Gynecologic Laparoscopists). This means the training is usually quite good, but not all mentors are created equal and there is no board required standardization.  Hence, some surgeons graduate being far better at excision than others.  So, you should still do your due diligence about the surgeon you select, based on as much information as possible, including their background, their results, what patients say, and so on.  

The other consideration is that this MIGS training, at least in the United States, may not include bowel and urologic surgery and usually does not provide  the credentials to obtain hospital privileges in these procedures.  So, an excision surgeon will often work with general surgeons, urologists and others as a team to cover the bowel and urinary tract aspects of surgery.  This can be very effective, but in some centers, logistic coordination of multiple surgeons works better than in others.   Unless this coordination is well worked out, it might be better to seek someone that is trained to do all or most excision without requiring a large team of supporting surgeons.

The other main way that gynecologic surgeons get advanced complex surgical training is through a three to four year gynecologic oncology fellowship accredited by the American Board of Obstetrics and Gynecology (ABOG) and American Council for Graduate Medical Education (ACME). This training includes the ability to operate on any organ in the abdomen and pelvis, including the diaphragm.  However, the training focus is on cancer and not much, if anything, on the pathophysiology of endometriosis.  So, while this surgical training leads to the absolute pinnacle of gynecologic surgeon expertise, not many of them understand and/or know how to treat endometriosis beyond what they learned in residency.  So, in some cases, an excisionist works with a gynecologic oncologist instead of a general surgeon or urologist.  On the other hand, a relative handful of gynecologic oncologists do focus on advanced endometriosis. 

If chest endo is strongly suspected on imaging, a thoracic surgeon is required as part of the team for formal lung surgery.  Similarly, if large nerves such as the sciatic nerve to the leg is likely to be involved on imaging, a neurosurgeon may also be part of a team or backup.   

Regarding fertility issues, an ABOG/ACGME board-accredited fellowship leading to specialization in Reproductive Endocrinology also exists and such physicians may be involved in your care with advanced technologies such as in vitro fertilization (IVF).  This was historically a more surgically focused specialty in the United States.  Today it is not, but some REI specialists have retained an interest in things surgical and may be trained in excision surgery.    

Determining the surgical strategy in your specific case can influence the outcome as well.  Related potential contributors to endometriosis recurrence after surgery include age, disease severity, and the type of planned surgical procedure performed. Older patients and those with more severe endometriosis are at higher risk of recurrence after surgery, unless perhaps the uterus and both ovaries are removed.  Patients who undergo conservative surgery, which aims to preserve fertility by removing as little normal tissue as possible, may also be at higher risk of recurrence compared to those who undergo more aggressive surgery.  This depends on the disease locations and the skill of the surgeon.  Conservative surgery can still result in removal of all visible endometriosis in many cases, with the right surgeon and right equipment.  So, discussion of your ranked, and possibly competing, priorities with your surgeon is essential for the best outcome.   For example, is the main goal pain relief or is it fertility preservation?  Or is it both? What is most important to you?  Being on the same page with your main surgeon, especially if there is a team involved with potential multiple opinions, is crucial to get the results you want. 

Hormonal Influences:

Hormonal imbalances play a crucial role in the development and recurrence of endometriosis. Endometriosis is believed to be strongly influenced by an excess of estrogen in the body, which can cause the endometrial-like tissue to grow outside the uterus. Hormonal therapies such as hormonal contraceptives, progestins, and gonadotropin-releasing hormone (GnRH) agonists and antagonists can be used to manage these hormonal imbalances.  The problem is that Mother Nature is infinitely smarter than the best doctor(s) and some of these therapies are worse than the disease, in terms of symptoms and side effects.  It really depends on the individual situation. 

Even after menopause, whether natural or by surgical excision of the ovaries, estrogen does not completely disappear.  Endo affected tissues can produce estrogen locally, other hormones and toxins you take in can convert to estrogen in your fat cells and, of course, hormonal replacement are all additional sources which can contribute to endometriosis recurrence. 

So, if the hormonal imbalances are not addressed, the endometriosis tissue can grow back after surgery.  But what does that really mean and what can you do to favorably influence this risk factor?   

One thing is for sure, doing something beyond surgery is better than nothing.  Anything you can do to reduce your estrogen load is first priority and use of progestins to balance this overload may also be recommended.  Whether or not to go for complete ovarian shutdown of estrogen production (GnRH analogs) is situation specific but usually not ideal due to the significant health effects of basically being in menopause.  The newer variations which provide some estrogen giveback are better but still have their limitations.  More often the pharmaceutical solution is oral contraceptives, which is far easier to handle in terms of potential side effects.   

One of the easiest things you can do yourself to reduce excess estrogen fairly quickly is to make sure your gut microbiome is functioning optimally.  This requires a close look at your diet, avoiding toxic junk food, and using probiotics and prebiotics.  When your gut bacteria are working well they metabolize the excess estrogen in your body and this leaves your body through bowel movements.  If not, excess estrogen is reabsorbed, recirculated and contributes to estrogen load.  

Another natural strategy is to lose weight.  Your fat cells store xenoestrogens from the toxins we all take in daily and slowly release this estrogen back into the bloodstream.  Also, the more fat cells you have the more other hormones are converted to estrogens which are also released into your blood stream. Weight loss is not a rapid proposition, but the best time to get started is yesterday.   

Reducing stress through mind-body techniques can also reduce estrogen levels.  Reducing alcohol intake improves your liver’s ability to break down estrogen.  Finally, some supplements, notably seaweed, can reduce estrogen in your body.  Others that top the list are Vitamin D, Magnesium, Milk Thistle, Omega 3 fatty acids (fish oil), Vitamin B6 and DIM (diindolylmethane).  DIM is found in cruciferous veggies, so you can up that intake easily through diet.  

Only after doing some of these things should you get radical on altering your hormones through medical pharmaceuticals.  There is a whole range of hormonal strategies including more natural compounded preparations.  Having said that, work with your doctor for the best strategy for your specific situation.   This is not something you should do on your own beyond diet and lifestyle modification.  The main take home message is that there is plenty of data which supports doing something to balance your estrogen and progesterone after surgery to reduce recurrence.   

Immune Influences:

The immune system plays a critical role in the development and progression of endometriosis. Endometriosis implants produce inflammatory factors that attract immune cells to the site, which can cause inflammation and pain. However, immune cells can also help to fight recurrence.  

Surgery may temporarily disrupt the balance between pro-inflammatory and anti-inflammatory immune cells, but acute inflammation helps with healing and this is self-limited in almost all cases.  This type of inflammation you do not want to interfere with in the short term.  On the other hand, inflammation can contribute to recurrence if it is allowed to become chronic.   Research suggests that immune-modulating therapies such as immunosuppressive agents and immunomodulatory cytokines could be effective in preventing the recurrence of endometriosis after surgery.  However, there are no reliable pharmaceutical treatments along this line yet.  On the other hand, research suggests that natural killer cells (NK) are deficient in endo patients.  An integrative nutritional approach to enhancing NK number and function is mushroom consumption.  Work with an integrative specialist on this.  

A recent sub-theory for endo development and recurrence is the “bacterial contamination hypothesis”.  This is based on the role of bacterial endotoxin (lipopolysaccharide, LPS) stimulating the pelvic inflammatory immune response.  Since patients with a history of pelvic infection, chronic endometritis and SIBO are known to have higher incidence of endometriosis, the commonality is a bacterial endotoxin (LPS).  So, regardless of whether the bacterial LPS got there via intestinal translocation (micro-leaking) or retrograde menstruation, its presence is potentially key in stimulating endo growth and regrowth.  Along these lines, treatment with either natural or pharmaceutical antibiotics may help attenuate chronic low level infection related inflammation. 

This is certainly not mainstream thought but plausible and based on at least animal model evidence with some human study support as well.  Attention to keeping your microbiome healthy and minimizing leaky gut as well as vigilance for any gynecologic infections may be prudent and is low risk. 

Toxin Influences:

Exposure to toxins and pollutants can also contribute to the development and recurrence of endometriosis. Certain toxins, such as dioxins and polychlorinated biphenyls (PCBs), have been shown to disrupt hormone levels, acting mainly as xenoestrogens, and increase the risk of endometriosis growth.  Therefore, lifestyle modifications such as avoiding environmental toxins and adopting a healthy diet may be beneficial in preventing the recurrence of endometriosis after surgery.  

Molecular Influences:

Recent research has shown that molecular changes in endometriosis implants may also contribute to the development and recurrence of endometriosis. Mutations in certain genes involved in regulating inflammation and hormone levels are examples.  Environmental and inflammatory influences can also upregulate hormone receptors, which means less estrogen is required to stimulate regrowth from micro-foci of endometriosis.   All these changes can be genetic mutations or epigenetic influences which turn normal and abnormal genes on and off. 

There is a lot of molecular crosstalk that regulates hormonal, inflammatory, immune, neurologic and other processes.  This is the glue that interconnects all of these factors that affect progression of endo and symptom causation.   

If your endo recurrence seems to be too rapid after a good excision surgery, or you have multiple recurrences and especially if you are older and/or have a family history of cancer or endo, please consider the following.  While rare, endo can degenerate into cancer or increase ovarian cancer risk and, even before that might happen, some gene mutations (e.g. ARID1A, KRAS, PIK3CA) can contribute to a more aggressive variant of endometriosis.  To determine if this is a contributor to your disease, genetic counseling and testing may be a good idea. 

Surgical Equipment Influences:

Minimally invasive surgery is the gold standard of endometriosis surgery these days, not surgery though a big incision called a laparotomy.  Having said that, after multiple prior surgeries, a surgeon may try to convince you that a laparotomy is what you need because you probably have too many scars or fibrosis and, therefore, minimally invasive surgery may be too risky.  While this may be true in very rare cases, it is not true in the vast majority of cases and you should probably seek other opinions.  Laparotomy surgery often leaves behind much more scarring than minimally invasive surgery.  There is always a possibility you may need yet another surgery, so find an expert to minimize all risks for this surgery and possibly subsequent ones. 

Minimally invasive surgery may mean laparoscopy or it may mean robotically assisted laparoscopy, depending on the surgeon you choose.  While laparoscopy has been around much longer, there are major technologic differences.  For simple to moderate cases, either is fine. However, for more complex cases and recurrence, you should understand the technical differences and what they mean.  Imaging may suggest but it is often not possible to accurately predict how much disease is present, or how much anatomic distortion there is, until the actual surgery starts.  But you can bet that if you are facing a repeat surgery, the anatomy may be more distorted than the first time.   

The following represents the opinion of this author surgeon who has used both laparoscopy and robotics over the past three decades, but, due to the reasons noted, has converted almost exclusively to robotics.  Having said that, it is important to understand that at the end of the day the skill of the surgeon trumps the equipment in most cases.  However, at some point, better technology does offer some clear advantages for most surgeons, should they choose to avail themselves of it.  Herein lies the problem.  Many have chosen to only dabble in robotics or ignore it altogether as an option.  So, beware of any surgeon who says that robotics is just a fad or training wheels for laparoscopy.  This is likely a surgeon who never took the time to master the superior technology offered by robotics to appreciate the difference.  The final major argument against robotics is that it costs too much or takes a little longer.  This does not affect the patient whatsoever because the costs to you are exactly the same.  In terms of surgery length, that is measurable in minutes.  So, wouldn’t you rather have a difficult surgery done properly or simply be the first one in the post-anesthesia recovery area?

• Benefits of Robotic Surgery over Laparoscopy

Robotic surgery is a minimally invasive surgical technique that uses robotic arms to help perform the surgery with more precision. This offers several benefits over traditional laparoscopy that may help to reduce the risk of endometriosis recurrence. These benefits include more precise removal of endometriosis implants, less damage to surrounding tissue, reduced risk of complications, and possibly a shorter recovery time. 

• Precise Instrumentation

Robotic surgery allows for more precise surgical movements, especially in delicate and anatomically distorted areas, reducing the risk of incomplete excision. The robotic arms move with reliably greater precision, dexterity and control than laparoscopic instruments.  During laparoscopy the surgeon is directly controlling the straight inflexible instruments with graspers and scissors at the tip.  This means that any undue exaggerated movements or tremors are amplified by the time they get to the tips, located twelve to seventeen inches away.  That is a long distance.  Try writing with a pen that long.  This does not happen with robotics which is micro-controlled.  In addition, the instruments at the tips of the robotic apparatus are wristed, meaning they are flexible and move like tiny human hands.  This also allows for more precision in difficult anatomical areas and in the presence of scar or fibrosis.   

Traditional laparoscopic instruments are limited by the possible motions at the surgical tips.  These motions are cutting, pushing, pulling and tearing, can be awkwardly unreliable and are reminiscent of eating with chopsticks.  One can certainly get good at it, but there are limitations. No question, the better the surgeon and the more that anatomy is normal, the smoother the surgery. However, at the end of the day, this can never match the smooth reliability of robotics. 

Due to the more precise control of instruments, robotic surgery can help reduce the risk of damage to surrounding tissues and organs. This helps reduce complications (e.g inadvertent damage to bowel, ureters or blood vessels) and, in this manner, enhances and accelerates the healing process. 

• Superior 3-Dimensional Optics

Robotics offers a 3-D magnified camera, which means there is depth perception as compared to laparoscopy.  In other words, you can see minute differences in how far one object is compared to one right next to it. There are laparoscopic simulated 3-D options available (3-D glasses as opposed to real binocular lenses as found in robotics), but most surgeons use a 2–D camera.  Using this, the surgeon cannot appreciate the distances accurately.  So, without depth perception, the surgeon can’t precisely tell the separation between tissues in a highly distorted anatomical situation. For example, there may be a section of bowel stuck to an endometrioma, or the blood vessels to the ovary may be obscured in inflammation. Dissecting this all safely is facilitated by a 3-D view. You can prove to yourself why 3-D is better. Put an eye patch on and try to (very carefully) try to do things around the house with only one eye to help you navigate. You will find that you underestimate or overestimate the distance between objects when you try to pick them up and might even bump into things too often. Hence you should not try this experiment without someone to help keep you steady. Humans are created with and are best equipped to function with 3-D vision, powered by two eyeballs. We can accommodate to 2-D but it is not natural or optimal.  This means with traditional laparoscopy your surgeon is operating with a handicap and, regardless of skill, that may make all the difference in some cases. 

Conclusion

In conclusion, endometriosis recurrence after surgery is a complex issue. Incomplete excision due to surgeon experience or technology differences, hormonal imbalances, immune influences, toxin influences, and molecular influences can all contribute to endometriosis recurrence after surgery.  Take time to digest all of this information and seek the best endometriosis specialist and surgeon available to you for your specific needs.  

Get in touch with Dr. Steve Vasilev

More articles from Dr. Steve Vasilev:

Endometriosis And Menopause; Everything You Need To Know

How to tell the difference between endometriosis and ovarian cancer

What would happen to the signs and symptoms of endometriosis after menopause?

References

Bulun SE. Endometriosis. N Engl J Med. 2009;360(3):268-279.

Giudice LC, Kao LC. Endometriosis. Lancet. 2004;364(9447):1789-1799.

Guo SW. Recurrence of endometriosis and its control. Hum Reprod Update. 2009;15(4):441-461.

Abbott, J., Hawe, J., Hunter, D., Holmes, M., Finn, P., & Garry, R. (2004). Laparoscopic excision of endometriosis: a randomized, placebo-controlled trial. Fertility and Sterility, 82(4), 878-884. https://doi.org/10.1016/j.fertnstert.2004.03.056

Aarts, J. W., Nieboer, T. E., Johnson, N., Tavender, E., Garry, R., Mol, B. W., & Kluivers, K. B. (2015). Surgical approach to hysterectomy for benign gynaecological disease. Cochrane Database of Systematic Reviews, (8). https://doi.org/10.1002/14651858.CD003677.pub5

Kho, R. M., & Akl, M. N. (2014). The role of robotic surgery in endometriosis management. International Journal of Women’s Health, 6, 967–972. https://doi.org/10.2147/IJWH.S50365

Magrina, J. F. (2013). Robotic surgery in gynecology. Best Practice & Research Clinical Obstetrics & Gynaecology, 27(3), 421–430. https://doi.org/10.1016/j.bpobgyn.2013.01.004

Nezhat, C., Saberi, N. S., Shahmohamady, B., & Nezhat, F. (2006). Robotic-assisted laparoscopy in gynecological surgery. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 10(3), 317–320.

Alkatout, I., Mettler, L., Beteta, C., Hedderich, J., & Jonat, W. (2013). Laparoscopic management of endometriosis and uterine fibroids. Minimally Invasive Therapy & Allied Technologies, 22(6), 363–369. https://doi.org/10.3109/13645706.2013.836658

Wang, Y. Z., Deng, L., Xu, H. C., & Zhang, Y. (2014). Robot-assisted versus conventional laparoscopic surgery for endometriosis: A meta-analysis. Journal of Obstetrics and Gynaecology Research, 40(4), 897–904. https://doi.org/10.1111/jog.12317

Chapron, C., Bourret, A., Chopin, N., Dousset, B., Leconte, M., Amsellem-Ouazana, D., … & Borghese, B. (2010). Surgery for bladder endometriosis: long-term results and concomitant management of associated posterior deep lesions. Human Reproduction, 25(4), 884-889. https://doi.org/10.1093/humrep/dep468

Hsu WC, Huang HY, Huang CY, et al. Robotic surgery for the treatment of endometriosis: a systematic review and meta-analysis. J Minim Invasive Gynecol. 2019;26(6):1035-1045.

Nezhat C, Saberi NS, Shahmohamady B, Nezhat F. Robotic-assisted laparoscopy vs conventional laparoscopy for the treatment of advanced stage endometriosis. JSLS. 2009;13(4):364-369.

Vercellini, P., Crosignani, P. G., Abbiati, A., Somigliana, E., Viganò, P., & Fedele, L. (2009). The effect of surgery for symptomatic endometriosis: the other side of the story. Human Reproduction Update, 15(2), 177-188. https://doi.org/10.1093/humupd/dmn062

Kyama, C. M., Mihalyi, A., Simsa, P., Falconer, H., Fulop, V., Mwenda, J. M., & D’Hooghe, T. M. (2009). Role of cytokines in the endometrial-peritoneal cross-talk and development of endometriosis. Frontiers in Bioscience, 14, 1795-1812. https://doi.org/10.2741/3332

Khan KN, Kitajima M, Hiraki K, et al. Immunological aspects of endometriosis. Reprod Med Biol. 2018;17(4):220-237.

InCheul Jeung, Keunyoung Cheon, Mee-Ran Kim, et al. Decreased Cytotoxicity of Peripheral and Peritoneal Natural Killer Cell in Endometriosis  PMID: 27294113 PMCID: PMC4880704 DOI: 10.1155/2016/2916070

Khan, K. N., Fujishita, A., Kitajima, M., Hiraki, K., Nakashima, M., Masuzaki, H. (2016). Intra-uterine microbial colonization and occurrence of endometritis in women with endometriosis†. Human Reproduction, 31(3), 568-579. https://doi.org/10.1093/humrep/dev321

Rier, S. E., & Foster, W. G. (2002). Environmental dioxins and endometriosis. Toxicological Sciences, 70(2), 161-170. https://doi.org/10.1093/toxsci/70.2.161

Sikora J, Mielczarek-Palacz A, Kondera-Anasz Z. Environmental toxins and endometriosis. Int J Occup Med Environ Health. 2012;25(4):380-385.

Grechukhina, O., Petracco, R., Popkhadze, S., Massasa, E., Paranjape, T., & Chan, E. (2012). A polymorphism in a let-7 microRNA binding site of KRAS in women with endometriosis. EMBO Molecular Medicine, 4(3), 206-217. https://doi.org/10.1002/emmm.201100200

Yap OW, Lau BW, Lim YK, et al. Molecular genetics of endometriosis-associated infertility. Obstet Gynecol Int. 2014;2014:201568.

2 years ago Endometriosis No comment

Endometriosis and Adenomyosis: Decoding Their Contribution To Pelvic Pain

Endometriosis and adenomyosis affect millions of women worldwide. While they share certain similarities, they also exhibit differences in their pathophysiology, clinical presentation, and management. Let’s compare and contrast endometriosis and adenomyosis, shedding light on their associations and highlighting relevant references.

Similarities

Both endometriosis and adenomyosis involve the growth of endometrial-like tissue outside the uterine cavity. This ectopic tissue remains responsive to hormonal changes, leading to inflammation, pain, and other similar symptoms that can significantly interfere with the quality of life (1).

Both conditions predominantly affect women of reproductive age and are associated with dysmenorrhea (painful periods), dyspareunia (painful intercourse), and infertility (2). The exact cause of these conditions remains unclear, but a combination of genetic, hormonal, and immune factors is thought to be involved in both (3). Both can also continue beyond or even be present initially after menopause.

Differences

1. Anatomical location 

While both endometriosis and adenomyosis involve the growth of ectopic endometrial-like tissue, they differ in anatomical location. Endometriosis is characterized by the presence of endometrial-like tissue outside the uterus, commonly on the ovaries, fallopian tubes, the peritoneum (pelvic and abdominal skin-like lining), and other organs (4). In contrast, adenomyosis is defined by the invasion of endometrial-like tissue into the myometrium (muscular wall) of the uterus (5).

2. Prevalence

Endometriosis affects approximately 10% of women of reproductive age, while adenomyosis is thought to impact between 20% and 35% of women in this age group (6). But the true prevalence of both conditions may be underestimated due to the invasive nature of diagnostic procedures and non-specific symptoms (7).

3. Diagnosis

The gold standard for diagnosing endometriosis is surgery using laparoscopy or robotics, both minimally invasive surgical procedures that allow for direct visualization and, if necessary, excision of endometrial-like tissue lesions (8). In contrast, adenomyosis is typically suspected using imaging techniques such as transvaginal ultrasound or magnetic resonance imaging (MRI). It can usually only be confirmed by the pathologist when the uterus is removed (9). An accurate preoperative biopsy is very difficult, although removal of discrete adenomyomas, leaving the uterus behind, is sometimes possible when the adenomyosis is not diffuse throughout the myometrium of the uterus.

4. Treatment

Both conditions are managed with a combination of medical and surgical therapies, depending on the severity of symptoms and reproductive goals. Hormonal therapies, including oral contraceptives, progestins, and gonadotropin-releasing hormone (GnRH) agonists and antagonists, are commonly used to manage symptoms in both endometriosis and adenomyosis (10). Integrative measures, including anti-inflammatory and anti-oxidant hormone-modulating nutrition and lifestyle modification, can also help not just control symptoms but also contribute to treating the root causes. 

However, surgical approaches differ between the two conditions. In endometriosis, the preferred surgical intervention is laparoscopic and robotic excision of the ectopic tissue (11). For adenomyosis, hysterectomy (removal of the uterus) may be considered in severe cases where fertility preservation is not a concern (12). Again, in some cases, when discrete adenomyomas are identified by imaging, they can be removed while leaving the uterus intact—this decision of removing the uterusis a highly individualized issue. 

Associations

It is not uncommon for endometriosis and adenomyosis to coexist in the same patient. One study found that the prevalence of adenomyosis was significantly higher among women with endometriosis (13). The coexistence of these conditions may exacerbate symptoms and pose additional challenges in diagnosis and management (14).

Both endometriosis and adenomyosis have been linked to a variety of other health conditions, some of which include:

1. Chronic pelvic pain: Women with either endometriosis or adenomyosis may experience chronic pelvic pain, which can be debilitating and significantly impact daily life (15).

2. Uterine fibroids: Although they are distinct conditions, adenomyosis and uterine fibroids (leiomyomas) can coexist in the same patient, further complicating the diagnosis and treatment (16). 

3. Autoimmune and inflammatory diseases: Women with endometriosis have an increased risk of developing autoimmune and inflammatory disorders, such as rheumatoid arthritis, systemic lupus erythematosus, and inflammatory bowel disease (17). This association is less well-established for adenomyosis but has been suggested in some studies (18).

4. Mental health: Both endometriosis and adenomyosis have been linked to mental health issues, including depression, anxiety, and decreased quality of life due to chronic pain and infertility (19).

Research and Future Directions

There is a growing body of research focused on understanding the pathophysiology, diagnosis, and treatment of endometriosis and adenomyosis. Some key areas of interest include:

1. Biomarkers: Identifying specific biomarkers for endometriosis and adenomyosis could greatly improve the diagnostic process and allow for earlier intervention, potentially improving patient outcomes (20).

2. Non-invasive imaging techniques: The development of more accurate, non-invasive imaging techniques for diagnosing both endometriosis and adenomyosis is a priority for researchers, as this would reduce the need for invasive diagnostic procedures (21).

3. Novel treatment approaches: Researchers are exploring novel treatment approaches, such as targeted hormonal therapies, immunomodulators, and anti-inflammatory agents, to improve symptom management and fertility outcomes in both endometriosis and adenomyosis (22).

4. Genetic and epigenetic factors: Investigating the genetic and epigenetic factors that contribute to the development and progression of endometriosis and adenomyosis may lead to a better understanding of these conditions and inform future therapeutic strategies (23).

Get in touch with Dr. Steve Vasilev

More articles from Dr. Steve Vasilev:

Endometriosis And Menopause; Everything You Need To Know

How to tell the difference between endometriosis and ovarian cancer

What would happen to the signs and symptoms of endometriosis after menopause?

References

1. Vercellini P, Viganò P, Somigliana E, Fedele L. (2014). Endometriosis: pathogenesis and treatment. Nat Rev Endocrinol. 10(5): 261-75.
2. Parazzini F, Esposito G, Tozzi L, Noli S, Bianchi S. (2017). Epidemiology of endometriosis and its comorbidities. Eur J Obstet Gynecol Reprod Biol. 209: 3-7.
3. Zondervan KT, Becker CM, Koga K, Missmer SA, Taylor RN, Viganò P. (2018). Endometriosis. Nat Rev Dis Primers. 4(1): 9.
4. Giudice LC, Kao LC. (2004). Endometriosis. Lancet. 364(9447): 1789-99.
5. Vannuccini S, Tosti C, Carmona F, Huang SJ, Chapron C, Guo SW, Petraglia F. (2017). Pathogenesis of adenomyosis: an update on molecular mechanisms. Reprod Biomed Online. 35(5): 592-601.
6. Garcia L, Isaacson K. (2011). Adenomyosis: review of the literature. J Minim Invasive Gynecol. 18(4): 428-37.
7. Chapron C, Marcellin L, Borghese B, Santulli P. (2019). Rethinking mechanisms, diagnosis and management of endometriosis. Nat Rev Endocrinol. 15(11): 666-82.
8. Johnson NP, Hummelshoj L, Adamson GD, Keckstein J, Taylor HS, Abrao MS, et al. (2017). World Endometriosis Society consensus on the classification of endometriosis. Hum Reprod. 32(2): 315-24.
9. Champaneria R, Abedin P, Daniels J, Balogun M, Khan KS. (2010). Ultrasound scan and magnetic resonance imaging for the diagnosis of adenomyosis: systematic review comparing test accuracy. Acta Obstet Gynecol Scand. 89(11): 1374-84.
10. Vercellini P, Buggio L, Berlanda N, Barbara G, Somigliana E, Bosari S. (2016). Estrogen-progestins and progestins for the management of endometriosis. Fertil Steril. 106(7): 1552-71.e2.
11. Yeung P Jr, Sinervo K, Winer W, Albee RB Jr. (2011). Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary? Fertil Steril. 95(6): 1909-12, 1912.e1.
12. García-Solares J, Donnez J, Donnez O, Dolmans MM. (2018). Pathogenesis of uterine adenomyosis: invagination or metaplasia? Fertil Steril. 109(3): 371-9.
13. Mijatovic V, Florijn E, Halim N, Schats R, Hompes P. (2010). Adenomyosis has no adverse effects on IVF/ICSI outcomes in women with endometriosis treated with long-term pituitary down-regulation before IVF/ICSI. Eur J Obstet Gynecol Reprod Biol. 151(1): 62-7.
14. Pinzauti S, Lazzeri L, Tosti C, Centini G, Orlandini C, Luisi S, et al. (2015). Coexistence of endometriosis and adenomyosis in women with chronic pelvic pain. J Obstet Gynaecol Res. 41(6): 909-14.
15. Howard FM. (2003). Chronic pelvic pain. Obstet Gynecol. 101(3): 594-611.
16. Stewart EA. (2015). Uterine fibroids. Lancet. 387(10022): 1189-99.
17. Sinaii N, Cleary SD, Ballweg ML, Nieman LK, Stratton P. (2002). High rates of autoimmune and endocrine disorders, fibromyalgia, chronic fatigue syndrome and atopic diseases among women with endometriosis: a survey analysis. Hum Reprod. 17(10): 2715-24.
18. Benagiano G, Brosens I, Habiba M. (2015). Structural and molecular features of the endomyometrium in endometriosis and adenomyosis. Hum Reprod Update. 21(4): 445-58.
19. Roomaney R, Kagee A. (2016). The association between pain, disability, fatigue and depression in women diagnosed with endometriosis: a moderated mediation analysis. J Psychosom Obstet Gynaecol. 37(4): 137-44.
20. Nisenblat V, Bossuyt PM, Shaikh R, Farquhar C, Jordan V, Scheffers CS, et al. (2016). Blood biomarkers for the non-invasive diagnosis of endometriosis. Cochrane Database Syst Rev. 5: CD012179.
21. Brosens I, Gordts S, Campo R, Benagiano G. (2016). Non-invasive methods of diagnosis of endometriosis. Curr Opin Obstet Gynecol. 28(4): 267-76.
22. Stratton P, Berkley KJ. (2011). Chronic pelvic pain and endometriosis: translational evidence of the relationship and implications. Hum Reprod Update. 17(3): 327-46.
23. Zondervan KT, Rahmioglu N, Morris AP, Nyholt DR, Montgomery GW, Becker CM, et al. (2016). Beyond endometriosis genome-wide association study: from genomics to phenomics to the patient. Semin Reprod Med. 34(4): 242-54.

2 years ago Endometriosis No comment

The Importance of Endometriosis Awareness Month

Every March, the world comes together to recognize and raise awareness for endometriosis. This global health issue affects hundreds of millions of humans worldwide yet is rarely discussed due to a lack of education and knowledge. Endometriosis Awareness Month allows us to learn more about this debilitating condition and how it impacts those who suffer from it.

What Is Endometriosis?

Endometriosis is a chronic disorder affecting up to 10% of women worldwide. Endometriosis can impact other genders as well. This disease occurs when tissue similar to the lining of the uterus grows outside the uterus and on other organs in the body, such as the ovaries, bladder, bowels, and abdomen. While endometriosis can occur at any age, it most commonly impacts women between 15-50 years old.

Common Symptoms

The most common symptom of endometriosis is pelvic pain. This pain can range from mild cramping or discomfort to severe period pain lasting days or weeks. Other symptoms include heavy periods (with large clots), painful bowel movements or urination during menstrual cycles, painful sex, fatigue, and infertility. Unfortunately, these symptoms are often misdiagnosed as menstrual cramps or irritable bowel syndrome (IBS).

Endometriosis Treatment Options & Management Strategies

Endometriosis cannot be cured, but treatment options are available to help manage its symptoms. These include surgical removal of endometrial growths, hormone therapy, pain management, and dietary changes. Additionally, lifestyle modifications like stress reduction techniques and exercise can help alleviate some symptoms of endometriosis.

Endometriosis Awareness Month is important in educating everyone about this chronic disorder that affects hundreds of millions globally. We must learn more about endometriosis so that those suffering from this condition can get the proper diagnosis and care they need. Together we can make a difference in raising awareness for this disease!

2 years ago Endometriosis No comment

Integrative Therapies for Endometriosis

While there is no known cure for endometriosis, several mainstream treatment options can help manage the symptoms and improve quality of life. These are primarily focused on surgery and hormonal therapy.   Research is ongoing to find additional multidisciplinary treatment options on the basis of immunomodulation, anti-inflammatory therapy, and molecular pathway signal alteration. Absent curative mainstream therapy, an approach that has gained popularity in recent years to help reduce symptoms and treat some underlying endo pathology, is “integrative therapy,” which adds a holistic natural component. 

What is integrative therapy?

Integrative therapy is an approach to healthcare that takes into account the whole person, including their physical, emotional, and spiritual health. It involves combining conventional medical treatment with complementary therapies such as nutrition, supplementation, botanicals, acupuncture, massage, yoga, and much more. Integrative therapy aims to address the underlying causes of a person’s health concerns rather than simply treating the symptoms. While it often employs some aspects of Eastern medicine, it is not the same as “alternative therapy,” which can be ineffective, costly, and even dangerous in some situations. This overview article only scratches the surface of available options and is not meant to be authoritative in scope or depth. 

Some of the complementary therapies that may be used in integrative therapy for endometriosis include:

Acupuncture

Everybody has heard of this, but briefly, acupuncture is a form of Traditional Chinese Medicine that involves the insertion of extremely thin needles into specific points along body pathways called meridians. These meridians and acupoints are close to where we know peripheral nerves course through your body. It has been used for centuries to treat a wide range of conditions, including chronic pain, headaches, anxiety, and infertility.

Acupuncture is believed to work by stimulating the body’s natural healing mechanisms, promoting the flow of energy, or Qi, throughout the body. It could also have an effect on the nerves from a mainstream perspective. In the context of endometriosis, acupuncture is thought to help by reducing inflammation and promoting the relaxation of the pelvic muscles, which can reduce pain and improve fertility.  

One thing is for sure; it is not just a placebo effect. A systematic review published in the Cochrane Library in 2018 evaluated the effectiveness of acupuncture in treating pelvic pain associated with endometriosis. The review included seven randomized controlled trials involving a total of 527 participants. The authors found that acupuncture was associated with a statistically significant reduction in pain intensity compared to no acupuncture or sham acupuncture. 

Another systematic review published in the Journal of Obstetrics and Gynecology in 2021 evaluated the effectiveness of acupuncture in treating endometriosis-related dysmenorrhea. The review included 17 randomized controlled trials involving a total of 1232 participants. The authors found that acupuncture was associated with a statistically significant reduction in pain intensity and duration compared to no acupuncture or sham acupuncture. They concluded that acupuncture might be a safe and effective therapy for managing endometriosis-related dysmenorrhea.

While the evidence for the effectiveness of acupuncture in treating endometriosis is promising, it is important to note that acupuncture is not a cure for endometriosis. Acupuncture may help to manage pain and other symptoms associated with the condition, but it does not address the underlying disease process other than helping reduce inflammation. Therefore, it should be used as part of a comprehensive treatment plan that includes conventional medical treatment as well as lifestyle modifications and other complementary therapies.

Acupressure

Acupressure is a related form of traditional Chinese medicine that involves applying pressure to specific points on the body to promote healing and reduce pain. Acupressure points that are commonly used in the treatment of endometriosis include the lower abdomen, lower back, and inner ankle. These points are believed to help regulate menstrual flow, reduce inflammation, and promote relaxation.

A randomized controlled trial published in the Journal of Complementary and Alternative Medicine in 2013 evaluated the effects of acupressure on pain and quality of life in women with endometriosis. The study included 60 participants who received either acupressure or a placebo. The authors found that acupressure was associated with a statistically significant reduction in pain intensity and an improvement in quality of life.

Another study published in the Journal of Obstetrics and Gynaecology Research in 2018 evaluated the effects of acupressure on menstrual pain and quality of life in women with endometriosis. The study included 62 participants who received either acupressure or a placebo. The authors found that acupressure was associated with a statistically significant reduction in menstrual pain intensity and an improvement in quality of life.

Massage therapy

Massage therapy is a complementary therapy that involves the manipulation of soft tissues in the body, such as muscles and tendons, to promote relaxation and reduce pain. It has been used for centuries to treat a variety of conditions, including chronic pain, anxiety, and depression. We are talking about massage that is in addition to 

Endometriosis can cause significant pain and discomfort, particularly during menstruation. Massage therapy can help ease tension in the pelvic muscles and reduce pain. A systematic review published in the Journal of Nursing Scholarship in 2019 evaluated the effectiveness of massage therapy in reducing pain and improving the quality of life in patients with endometriosis. The review included 13 studies involving a total of 602 participants. The authors found that massage therapy was associated with a statistically significant reduction in pain intensity and duration and improvements in quality of life and anxiety levels. 

Massage therapy may also be beneficial for reducing stress and anxiety, which are common symptoms of endometriosis. Chronic pain can cause significant emotional distress, and massage therapy has been shown to be effective in reducing anxiety levels and promoting relaxation. A randomized controlled trial published in the Journal of Psychosomatic Obstetrics and Gynecology in 2018 evaluated the effects of massage therapy on anxiety levels in women with endometriosis. The study included 60 participants who received either massage therapy or no treatment. The authors found that massage therapy was associated with a statistically significant reduction in anxiety levels compared to no treatment.

In addition to its potential benefits for reducing pain and anxiety, massage therapy may also help to improve circulation and promote lymphatic drainage, which can help to reduce inflammation and promote healing. A review published in the Journal of Manual and Manipulative Therapy in 2016 evaluated the effectiveness of massage therapy for managing chronic pelvic pain, including endometriosis. The authors concluded that massage therapy might be a safe and effective therapy for managing chronic pelvic pain, mainly when used with other therapies.

Mind-body Techniques

Meditation, yoga, Tai chi, and others are complementary therapies that can be used in the treatment of endometriosis to help manage physical, emotional, and mental support. These techniques focus on the connection between the mind and the body and are designed to help individuals learn how to use their thoughts and emotions to promote healing and reduce pain.

Endometriosis is often associated with significant emotional and mental distress, including anxiety, depression, and stress. Mind-body techniques can help to manage these symptoms by promoting relaxation and reducing stress levels. A systematic review published in the journal Obstetrics and Gynecology Clinics of North America in 2020 evaluated the effectiveness of mind-body therapies for managing chronic pain, including endometriosis. The review included 20 studies involving a total of 1126 participants. The authors found that mind-body therapies, including meditation, yoga, and Tai chi, were associated with statistically significant reductions in pain intensity, pain duration, and stress levels.

Meditation is a mind-body technique that involves focusing the mind on a particular object or thought to promote relaxation and reduce stress levels. A randomized controlled trial published in the journal Pain Medicine in 2018 evaluated the effects of mindfulness meditation on pain and quality of life in women with endometriosis. The study included 20 participants who received either mindfulness meditation or no treatment. The authors found that mindfulness meditation was associated with a statistically significant reduction in pain intensity and an improvement in quality of life.

Yoga is a mind-body technique that combines physical postures, breathing exercises, and meditation to promote relaxation and reduce stress levels. A randomized controlled trial published in the journal Obstetrics and Gynecology in 2018 evaluated the effects of yoga on pain and quality of life in women with endometriosis. The study included 90 participants who received either yoga or no treatment. The authors found that yoga was associated with a statistically significant reduction in pain intensity and improved quality of life.

Tai chi is a mind-body technique that involves slow, gentle movements and deep breathing exercises to promote relaxation and reduce stress levels. A systematic review published in the journal Pain Medicine in 2015 evaluated the effectiveness of Tai chi for managing chronic pain, including endometriosis. The review included ten studies involving a total of 494 participants. The authors found that Tai chi was associated with statistically significant reductions in pain intensity and duration and stress levels.

Diet and Nutrition

Diet modification can directly impact inflammation, hormone balance, and immune system function. While no specific diet has been shown to cure endometriosis, dietary changes, and nutritional supplements may be beneficial in reducing inflammation and pain associated with the condition.  

Inflammation is a key factor in the development and progression of endometriosis. Certain foods and nutrients can contribute to inflammation in the body, while others have anti-inflammatory properties that can help to reduce inflammation. Omega-3 fatty acids, found in fatty fish such as salmon and mackerel, as well as in flaxseeds and chia seeds, have been shown to have potent anti-inflammatory effects. Magnesium, found in leafy greens, nuts, and whole grains, can also help to reduce inflammation and muscle tension. Vitamin D, found in fatty fish, eggs, and fortified dairy products, may help to regulate immune system function and reduce inflammation. Overall, the most anti-inflammatory antioxidant diet is whole-food plant-based.

Hormone balance is another important consideration in the management of endometriosis. Certain foods can help to balance hormones, while others can disrupt hormone balance and exacerbate symptoms. Phytoestrogens, found in foods such as soy products, flaxseeds, and lentils, can help to balance estrogen levels and reduce symptoms of endometriosis. On the other hand, foods high in saturated and trans fats, such as red meat and processed foods, can increase inflammation and disrupt hormone balance.

A systematic review published in the journal Nutrients in 2021 evaluated the effectiveness of dietary interventions for managing endometriosis. The review included 17 studies involving a total of 1311 participants. The authors found that dietary interventions, such as increasing intake of fruits and vegetables, omega-3 fatty acids, and phytoestrogens, and decreasing intake of saturated and trans fats, were associated with improved pain and quality of life, and other symptoms of endometriosis.

Supplements

Similar to diet, supplements may be beneficial in managing endometriosis by reducing inflammation, promoting hormonal balance, and supporting immune system function. While it is best to focus on transitioning to an anti-inflammatory, antioxidant diet, targeted supplementation may enhance the effect in some cases. 

A randomized controlled trial published in the Journal of Reproductive Medicine in 2013 evaluated the effects of omega-3 fatty acids on pain and quality of life in women with endometriosis. The study included 59 participants who received either omega-3 fatty acids or a placebo. The authors found that omega-3 fatty acids were associated with a statistically significant reduction in pain intensity and improved quality of life.

A systematic review published in the European Journal of Obstetrics, Gynecology, and Reproductive Biology in 2017 evaluated the effectiveness of magnesium for managing menstrual pain, including endometriosis-related pain. The review included 13 studies involving a total of 1870 participants. The authors found that magnesium was associated with a statistically significant reduction in menstrual pain intensity and duration.

The study mentioned above also evaluated the effectiveness of vitamin D for managing menstrual pain, including endometriosis-related pain. The review included five studies involving a total of 238 participants. The authors found that vitamin D was associated with a statistically significant reduction in menstrual pain intensity and duration. Vitamin D supplementation is often essential because even in sunbelt areas of the world, up to 30% of the population is deficient.  

It is important to note that supplements can have side effects and may interact with other medications, so it is essential to consult with a healthcare provider before using supplements for endometriosis. 

Herbal Medicine 

Herbal medicine, also known as herbalism, is the use of plants or plant extracts to treat or prevent disease. Many herbs have anti-inflammatory and pain-relieving properties, making them useful in managing endometriosis. While further research is needed to understand the effectiveness of herbal medicine for endometriosis fully, many women have reported positive outcomes from using herbal remedies as a complementary therapy.

Turmeric is one herb that has been suggested to effectively reduce inflammation and pain associated with endometriosis. Turmeric contains a compound called curcumin, which has potent anti-inflammatory effects. A randomized controlled trial published in the journal Complementary Therapies in Medicine in 2013 evaluated the effects of curcumin on pain and quality of life in women with endometriosis. The study included 67 participants who received either curcumin or a placebo. The authors found that curcumin was associated with a statistically significant reduction in pain intensity and an improvement in quality of life.

Ginger is another herb that has been suggested to be effective in reducing inflammation and pain associated with endometriosis. Ginger contains compounds called gingerols and shogaols, which have anti-inflammatory and pain-relieving effects. A randomized controlled trial published in the journal Pain in 2014 evaluated the effects of ginger on pain and menstrual symptoms in women with endometriosis. The study included 70 participants who received either ginger or a placebo. The authors found that ginger was associated with a statistically significant reduction in pain intensity and an improvement in menstrual symptoms.

Chasteberry, also known as vitex, is an herb that has been suggested to be effective in regulating hormones and reducing symptoms of endometriosis. Chasteberry contains compounds that can help to balance estrogen and progesterone levels, which can help to reduce inflammation and pain. A systematic review published in the journal Complementary Therapies in Medicine in 2018 evaluated the effectiveness of chasteberry for managing endometriosis-related pain. The review included six studies involving a total of 596 participants. Chasteberry was associated with a statistically significant reduction in pain intensity and duration compared to no treatment in this study.

Just as in the case of supplements, work with an expert in the field to avoid interactions with prescription medications. 

Aromatherapy

Aromatherapy is a form of complementary therapy that involves using essential oils to promote health and well-being. Essential oils are concentrated plant extracts that are believed to have therapeutic properties. They can be used in several ways, such as inhaled, applied topically, or added to a bath.

While there is limited scientific research on the effectiveness of aromatherapy for endometriosis, some women with the condition have reported that it has helped to manage their symptoms. Aromatherapy may be particularly helpful for managing emotional symptoms, such as anxiety and depression, which are all too common. 

A short list of essential oils that may be helpful for women with endometriosis includes Lavender, Clary sage, Rose, Peppermint, and Eucalyptus. 

When using aromatherapy, it is important to dilute the essential oils with a carrier oil, such as coconut oil or almond oil, as they can be irritating to the skin when used undiluted. Aromatherapy should also be used with caution in women who are pregnant or breastfeeding, as some essential oils may not be safe for use during pregnancy or while breastfeeding.

Hyperbaric Oxygen Therapy (HBOT)

The theory behind using HBOT for endometriosis is that the increased oxygen levels in the body may help to reduce inflammation and promote the healing of damaged tissues. Some preliminary studies have suggested that HBOT may be effective in reducing pain and improving quality of life in women with endometriosis, although larger studies are needed to confirm these findings.

It is important to note that HBOT is not currently approved by the U.S. Food and Drug Administration (FDA) for the treatment of endometriosis, and it should only be used under the guidance of a qualified healthcare provider. There are also some risks associated with HBOT, including ear pain, sinus pressure, and oxygen toxicity, which can be serious in rare cases.

Summary

By addressing both the physical and emotional aspects of endometriosis, integrative therapy can help women to achieve a better quality of life and attach some of the suspected root causes of endo as well. This can include improvements in energy levels, sleep quality, and overall sense of well-being.

Integrative therapy is not a replacement for conventional medical treatment for endometriosis but rather a complementary approach that can be used in conjunction with conventional treatments to achieve better outcomes. 

In conclusion, endometriosis is a complex condition that requires a multidisciplinary approach to treatment. Integrative therapy offers a promising addition to managing the symptoms of endometriosis by combining conventional medical treatments with complementary therapies that address the physical, emotional, and spiritual aspects of care. 

Your endometriosis specialist can help guide you to practitioners who may be best suited for applying integrative therapies to endometriosis. It is ideal if you can find a specialist who is also certified in some aspect of East-West integrative medicine. These are hard to find but are out there. 

Get in touch with Dr. Steve Vasilev

More articles from Dr. Steve Vasilev:

Endometriosis And Menopause; Everything You Need To Know

How to tell the difference between endometriosis and ovarian cancer

What would happen to the signs and symptoms of endometriosis after menopause?

References:

Manheimer E, Cheng K, Linde K, Lao L, Yoo J, Wieland S, Berman BM. Acupuncture for treatment of infertility: a systematic review. Obstet Gynecol. 2008;111(4):904-911. doi: 10.1097/AOG.0b013e31816a4c2c. PMID: 18378763.

Fernández-Martínez E, Onieva-Zafra MD, Parra-Fernández ML, et al. Effects of Massage on Pain, Anxiety, and Quality of Life in Patients With Endometriosis: A Systematic Review. J Nurs Scholarsh. 2019;51(6):614-623. doi:10.1111/jnu.12516

Soares TR, de Melo NH, de Lima Martins F, et al. The effectiveness of yoga in pain, menstrual disturbances, quality of life, and inflammatory markers in women with endometriosis: a systematic review. Complement Ther Clin Pract. 2021;44:101368. doi:10.1016/j.ctcp.2021.101368

Mira T, Mira N, Canadas D. Nutrition and endometriosis: therapeutic strategies. Biomed Res Int. 2015;2015:191461. doi: 10.1155/2015/191461. PMID: 26064937; PMCID: PMC4445933.

De Leo V, Musacchio MC, Cappelli V, Massaro MG, Morgante G, Petraglia F. Combined nutraceutical approach in the management of endometriosis-related pain. Minerva Ginecol. 2018;70(3):246-253. doi: 10.23736/S0026-4784.17.04057-9. PMID: 29243440.

Pan J, Dai Q, Zhang J, et al. Omega-3 fatty acids intake and risk of endometriosis: a systematic review and meta-analysis. Nutrients. 2018;10(10):1542. doi:10.3390/nu10101542

Sesti F, Caponecchia L, Pietropolli A, et al. Magnesium in the gynecological practice: a literature review. Magnes Res. 2017;30(1):1-7. doi: 10.1684/mrh.2017.0415. PMID: 28498078.

Amr MF, El-Mogy MM, Shams T, Vieira KSR, El-Masry SA. Vitamin D and Its Association with Endometriosis and Menstrual Pain: A Systematic Review and Meta-Analysis. J Clin Med. 2018;7(10):356. doi:10.3390/jcm7100356

Zhai B, Zheng W, Qi X, Tang K, Qin A, Lu J. The effectiveness of herbal medicine in the treatment of endometriosis: A systematic review. Complement Ther Med. 2017;34:81-96. doi: 10.1016/j.ctim.2017.07.006. PMID: 28917372.

Gottfried SF, Long B, Wittlake WA. Hyperbaric oxygen therapy for endometriosis: a systematic review. Undersea Hyperb Med. 2018;45(1):27-37. PMID: 29698797.

Kim TH, Lee HH, Ahn JY, et al. Effect of aromatherapy on symptoms of dysmenorrhea in college students: A randomized placebo-controlled clinical trial. J Obstet Gynaecol Res. 2018;44(6):1048-1054. doi: 10.1111/jog.13631. PMID: 29603750.

Gómez-Caravaca AM, Gómez-Romero M, Arráez-Román D, Segura-Carretero A, Fernández-Gutiérrez A. Advances in the analysis of bioactive compounds in functional foods. Curr Med Chem. 2011;18(33):5289-5302. doi: 10.2174/092986711798184194. PMID: 22023624.

Hwang JH, Han SM, Kwon YK. Short-term effects of aromatherapy massage on women with primary dysmenorrhea: a randomized controlled trial. J Altern Complement Med. 2009;15(7):731-738. doi: 10.1089/acm.2008.0368. PMID: 19552560.

de Sousa DP, de Almeida Soares Hocayen P, Andrade LN, Andreatini R. A systematic review of the anxiolytic-like effects of essential oils in animal models. Molecules. 2015;20(10):18620-18660. doi: 10.3390/molecules201018620. PMID: 26473827.

Han Y, Fan A, Bi X, Zhang Y, Wang S. The effect of hyperbaric oxygen therapy on endometriosis: A systematic review and meta-analysis. Medicine (Baltimore). 2019;98(49):e18199. doi:10.1097/MD.0000000000018199

Liu JP, McIntosh H, Lin H. Chinese herbal medicines for endometriosis. Cochrane Database Syst Rev. 2006;(4):CD006568. doi: 10.1002/14651858.CD006568. PMID

2 years ago Endometriosis No comment

Endometriosis: What to Do After Diagnosis

If you’ve been diagnosed with endometriosis, you may wonder what your next steps should be. Here’s a quick overview of some things you can do after receiving a diagnosis of endometriosis.

Educate yourself about the condition.

One of the best things you can do after an endometriosis diagnosis is to educate yourself about the condition. Knowledge will help you better understand your symptoms and give you an idea of available treatments. You can also ask questions about your diagnosis to your doctor or another healthcare provider.

Find an endometriosis doctor

When treating and managing endometriosis, all doctors are not the same. If you have or suspect you might have endometriosis, you should never just walk into the office of a random obstetrics/gynecology (OB-GYN) surgeon.

However, it can be tricky to find an endometriosis specialist who is highly skilled and follows the best treatment practices for this disorder. To learn more about endometriosis, read this article that introduces the condition, signs and symptoms, causes, complications, and treatments.

With so many myths about endometriosis (endo) – it’s essential to separate facts from fiction. Arm yourself with research and a solid foundation of knowledge to help you simplify the process and to get in touch with a trusted endo expert. Please keep reading to find out why using an endo expert is important, red flags your doctor/surgeon is not the right fit, and how to find an endometriosis specialist near you.

Talk to your doctor about treatment options.

There is no cure for endometriosis, but there are treatments that can help lessen your symptoms and improve your quality of life. Some common treatments for endometriosis include excision surgery, medications for symptom management, and lifestyle changes. Talk to your doctor about which treatment or combination of options may be right for you.

Make lifestyle changes.

Specific lifestyle changes can help lessen the symptoms of endometriosis. These include regular exercise, managing stress, and eating a healthy diet rich in fruits, vegetables, whole grains, and lean protein. Making these changes can help improve your overall health and well-being.

Join a support group.

It can be helpful to talk to other women dealing with endometriosis. There are many online and in-person support groups available for women with endometriosis. Joining one of these groups can help you feel less alone and provide you with valuable information and support from others who understand what you’re going through.

If you’ve been diagnosed with endometriosis, you’re not alone. And there are things you can do to manage your symptoms and improve your quality of life. Educate yourself about the condition, talk to your doctor about treatment options, make lifestyle changes, and join a support group if possible. These steps will help you better cope with your diagnosis and live a fuller life despite having endometriosis.

2 years ago Endometriosis No comment

5 Signs You Need to See a Gynecologist

Regular gynecologist visits are essential to maintaining sexual and reproductive health. However, many women put off making an appointment until they are pregnant or facing a problem. There are several reasons to visit a gynecologist. If you’re unsure whether you need to see a gynecologist, here are five signs that it’s time to schedule an appointment.

You Haven’t Been in a While (Or Ever)

The American College of Obstetricians and Gynecologists (ACOG) recommends that women have their first gynecological visit when they turn 18 or become sexually active, whichever comes first. If you’re overdue for a checkup, it’s time to schedule an appointment. Remember that you don’t need to be sexually active to see a gynecologist – they can provide comprehensive care for all aspects of your reproductive health, even if you’re not sexually active.

You’re Experiencing Abnormal Bleeding

If you’re bleeding between periods, after sex, or after menopause, it’s time to see a gynecologist. Abnormal bleeding can be caused by everything from uterine fibroids to endometriosis to cervical cancer, so getting checked out as soon as possible is important.

You Have Painful Periods

Periods are supposed to be discomforting, but they shouldn’t be so painful that they interfere with your daily life. If you miss work or school because of period pain, it’s time to see a gynecologist. They may be able to diagnose the underlying reason for your pain and help with the treatment. 

You Have Pelvic Pain Outside of Your Periods

If you’re experiencing pelvic pain at any time other than during your period, it could be a sign of endometriosis, pelvic inflammatory disease, or another condition. Many conditions that cause pelvic pain can be treated if they’re caught early, so don’t hesitate to make an appointment with your gynecologist.

You Have New and Unusual Symptoms

If you’ve started experiencing new and unusual symptoms – like changes in your vaginal discharge or burning during urination – it’s time to go to the gynecologist. These could be signs of infection or another problem, so getting checked out as soon as possible is best.

If you’re experiencing any of the above symptoms, don’t wait – schedule an appointment with your gynecologist today! The sooner you get checked out, the sooner you can start feeling better and return to your normal routine. In addition to the five signs we reviewed here, there are countless other reasons to visit a gynecologist. So it would be best to stay informed about your health and communicate with your doctors about any questions or concerns.

2 years ago Endometriosis No comment

Understanding the Link Between Endometriosis and Insomnia

People living with endometriosis often struggle to get a good night’s rest. While it may seem like a mystery, there is a strong connection between endometriosis and insomnia. In this blog post, we’ll look at how endometriosis can lead to insomnia and what you can do to get better sleep if you have endometriosis.

What Is Endometriosis?

Endometriosis is a chronic medical condition that mostly affects women of reproductive age. It occurs when tissue similar to the lining of the uterus grows outside of the uterus, usually in the abdominal cavity or on other organs in the pelvic area. This tissue can cause pain, inflammation during menstruation, and other symptoms such as fatigue, nausea, and bloating.

How Can Endometriosis Lead To Insomnia?

There are several ways that endometriosis can contribute to insomnia. The most common way is through chronic pain. Painful cramps, bloating, and nausea can make it difficult for an individual with endometriosis to fall asleep or stay asleep throughout the night. Additionally, many women experience increased pain during their period—when they usually try to get some rest—making it even more challenging to sleep well while living with endometriosis.

Another factor contributing to insomnia in women with endometriosis is anxiety and stress associated with managing this chronic condition. It’s not uncommon for people with endometriosis to feel overwhelmed or anxious about managing their symptoms on top of everything else going on in their lives. Unfortunately, this anxiety can lead to difficulty falling asleep or staying asleep at night.

What To Do With Endometriosis And Insomnia

Endometriosis has been linked directly to insomnia in many studies. However, there are steps you can take if you’re experiencing difficulty sleeping due to this condition. First and foremost, talk with your doctor about your options for treating your endo-related pains. Additionally, reducing stress levels by finding healthy coping mechanisms such as yoga or meditation may also help improve your overall sleep quality since stress has been known to contribute to insomnia in those living with endo-related complications. Finally, getting enough exercise during the day (but not too close before bedtime), eating healthier foods, avoiding caffeine late in the day, and creating an ideal sleeping environment may all help promote a better quality of restful sleep at night. These steps improve your chances of getting a good night’s rest despite having endo-related complications.

Endometriosis can result in insomnia because of pain, anxiety, and other endo-related issues. However, you can help yourself to have a better sleep by talking with your doctor to plan a treatment that reduces your pain and other issues. Meanwhile, some lifestyle hacks such as relaxation techniques, regular exercise, healthy eating, less caffeine, and a good sleep environment can also be helpful.

2 years ago Endometriosis No comment

Silent Endometriosis: What You Need to Know

Endometriosis is a condition where a tissue similar to the lining of the uterus grows outside of it, causing pain and other symptoms. But many people don’t realize there is a type of endometriosis that is often “silent,” meaning it does not cause any symptoms. Let’s explore silent endometriosis and what it means for a person.

What is Silent Endometriosis?

Silent endometriosis, also known as asymptomatic endometriosis, is a condition in which the endometriosis tissue does not cause any pain or other symptoms. This may sound like an oxymoron—how can something be endometriosis if it doesn’t cause pain? But this type of endometriosis occurs more often than you might think. Up to 25% of women with endometriosis have no symptoms. Diagnosis only happens when they have infertility or have another surgery in their pelvis or abdomen.

It’s important to note that silent endometriosis does not mean the condition won’t eventually become symptomatic. Sometimes, silent endometriosis can become symptomatic (painful) endometriosis over time. That’s why people need to be aware of this condition and get tested for it if they experience any signs or symptoms.

How Is Silent Endometriosis Diagnosed?

The only way to diagnose silent endometriosis definitively is through laparoscopic surgery and biopsy. During this procedure, a doctor will make incisions in your abdomen and insert a tiny camera into it so they can see inside your body and examine any endometriosis lesions or growths on your organs. They may also take samples from these lesions for further testing to determine whether or not they are cancerous or benign (noncancerous). However, due to the invasive nature of this procedure, many doctors will only recommend it if signs or symptoms of endometriosis are present.

Silent endometriosis is an often overlooked form of endometriosis due to its lack of obvious signs and symptoms. While some people may never experience any issues related to their silent endometriosis diagnosis, some silent endometriosis can turn into symptomatic conditions. 

2 years ago Endometriosis , Teen Endometriosis No comment

Endometriosis in Teens – What You Need to Know

Adolescence is a transformative phase marked by physical and emotional changes, but for some young individuals, this journey is overshadowed by a debilitating condition known as endometriosis.

Endometriosis is a painful and often misunderstood and misdiagnosed condition that affects 1 in 10 individuals assigned female at birth (AFAB) most commonly (but not exclusively) between the ages of 15-50. Teen endometriosis is a silent struggle that demands greater awareness and prompt intervention. This condition can be particularly difficult, as they are just beginning to navigate the world of menstrual health. Knowing the signs and symptoms of endometriosis from parents and schools and looking for endometriosis specialists for teens can help them get the treatment they need and make it easier to manage their pain.

What is Endometriosis in Teens?

Endometriosis is when cells similar to the lining of the uterus (endometrium) grow outside the uterus onto tissues and organs, in the abdomen, pelvis, and even distant sites such as the lungs or diaphragm. These endometriosis lesions behave similarly to the endometrium in some ways, but there are some distinct differences. They produce substances that promote inflammation, pain, and tissue scarring, making it difficult for some women to become pregnant. They can also produce their own estrogen via aromatase.  Symptoms vary from mild to severe, including pelvic pain during menstruation, heavy periods, pain during intercourse, gastrointestinal issues like cramps or diarrhea, fatigue, and more.

While endometriosis can affect individuals of any age, its onset often traces back to adolescence, with a staggering 38% of those diagnosed reporting symptoms before the age of 15. Despite its prevalence, the journey to an accurate diagnosis can be arduous, with an average delay of over nine years from the onset of symptoms.

Symptoms: Unveiling the Silent Struggle

The symptoms of endometriosis in teens can be diverse and perplexing, often leading to misdiagnosis or dismissal as “normal menstrual cramps.” However, these symptoms should not be ignored, as they can significantly impact a young woman’s quality of life and development.

Common symptoms of teen endometriosis include:

• Severe, debilitating menstrual cramps: Unlike typical menstrual discomfort, endometriosis-related cramps are often resistant to over-the-counter pain medications and can persist throughout the entire menstrual cycle.
• Heavy or irregular periods: Abnormal bleeding patterns, such as heavy menstrual flow or spotting between periods, can be indicators of endometriosis.
• Pelvic or lower abdominal pain: Endometriosis can cause chronic pelvic or lower abdominal pain that may worsen during menstruation or intercourse.
• Gastrointestinal distress: Nausea, constipation, diarrhea, and painful bowel movements can accompany endometriosis due to the proximity of endometrial lesions to the digestive tract.
• Urinary issues: Endometriosis can lead to painful urination, frequent urination, or blood in the urine.
• Fatigue and mood changes: The constant pain and hormonal fluctuations associated with endometriosis can contribute to fatigue, irritability, and mood swings.

While these symptoms may initially be dismissed as normal adolescent experiences, their persistence and severity should prompt further investigation.

Diagnosing Endometriosis in Teens

Diagnosing endometriosis in teens can be a complex and frustrating process, often involving multiple healthcare providers and misdiagnoses. It can be tricky because its symptoms may resemble normal period discomfort, ovarian cysts, or uterine fibroids. If a teen experiences any of these symptoms, taking them seriously and seeking medical attention is essential. 

The doctor may perform a pelvic exam or an ultrasound to look for signs of endometriosis deposits on other organs. The only definitive way to diagnose endometriosis is through a minimally invasive surgical procedure called laparoscopy, which allows the doctor to visually inspect the pelvic region and obtain tissue samples for biopsy.

However, before undergoing laparoscopy, healthcare providers may recommend various diagnostic steps, including:

• Detailed medical history: A comprehensive review of symptoms, family history, and menstrual patterns can provide valuable insights.
• Pelvic examination: While not definitive, a pelvic exam can help identify potential sources of pain or abnormalities.
• Imaging tests: Ultrasounds or magnetic resonance imaging (MRI) may be used to rule out other conditions or detect endometrial cysts (endometriomas).
• Hormone therapy trial: Prescribing hormonal birth control or medications that suppress ovulation can help determine if symptoms improve, this may suggest the presence of endometriosis but is not definitive as a significant number of individuals with endometriosis do not respond to hormonal contraceptives for symptom management.

It’s important to note that endometriosis lesions in teens can have an atypical appearance, making visual diagnosis during laparoscopy challenging. Therefore, seeking care from a gynecologist experienced in diagnosing and treating endometriosis in adolescents is crucial.

Treatment Options & Endometriosis Specialist for Teens

While endometriosis has no cure, various treatment approaches can effectively manage symptoms and improve the quality of life for teens with the condition. Once a teen is suspected of having endometriosis, several treatment options are available, depending on their individual needs. A multidisciplinary team, including gynecologists, pain management specialists, physical therapists, and mental health professionals, may be involved in developing a comprehensive treatment plan. Common treatment options for teen endometriosis include:

• Hormonal therapies: Hormonal birth control pills, progestin-only medications, or hormonal intrauterine devices (IUDs) can help suppress menstruation and help with symptom management.
• Pain management: Over-the-counter or prescription pain medications, as well as alternative therapies like acupuncture or massage, can help alleviate chronic pain associated with endometriosis.
• Surgery: Minimally invasive laparoscopic surgery may be recommended to remove endometriosis lesions and adhesions; however, surgery for this population is a bit controversial because of the young age and chance of recurrence of endometriosis.
• Physical therapy: Pelvic floor physical therapy can help relax pelvic muscles, reduce pain, and improve overall function.
• Psychological support: Counseling or support groups can assist teens in coping with the emotional and social impacts of endometriosis.

The treatment approach should be tailored to the individual’s symptoms, severity, and personal preferences, with ongoing monitoring and adjustments as necessary.

Fertility Preservation: Safeguarding Future Possibilities

While endometriosis is not directly linked to infertility in teens, the condition can progress and potentially impact future fertility if left untreated. As endometriosis lesions and adhesions accumulate over time, they can distort pelvic anatomy, block fallopian tubes, or impair ovarian function, making conception more difficult.

For this reason, early diagnosis and treatment of endometriosis in adolescence are crucial for preserving fertility potential. Additionally, some endometriosis clinics offer fertility preservation services, such as egg or embryo freezing, for teens who may undergo treatments that could temporarily or permanently impact their fertility.

By addressing endometriosis early and proactively considering fertility preservation options, young women can take control of their reproductive health and increase their chances of conceiving in the future.

Empowering Teens: Advocacy and Support

Endometriosis can be an isolating and misunderstood condition, particularly for teens who may feel alone in their struggle. However, several organizations and support networks have emerged to empower young women and raise awareness about teen endometriosis.

Organizations like the Endometriosis Association and the World Endometriosis Research Foundation provide valuable resources, including educational materials, online support communities, and advocacy initiatives. These platforms offer teens and their families a space to connect, share experiences, and access reliable information about endometriosis.

Additionally, some endometriosis clinics and advocacy groups encourage teens to become advocates themselves, sharing their stories, and raising awareness within their communities. By breaking the silence surrounding endometriosis, these young advocates can inspire others to seek help and foster a more inclusive and supportive environment for those affected by the condition.

Conclusion: Igniting Hope and Empowerment

Endometriosis is a complex condition that affects many people throughout their lives, but teens especially need extra care due to their developing bodies and hormones. Endometriosis in teens is a silent struggle that demands greater awareness, understanding, and action. 

Knowing the symptoms, seeking early diagnosis and treatment, and embracing a multidisciplinary approach, teens don’t have to suffer needlessly from this often debilitating condition any longer than necessary! With proper care and support, they can manage their condition and live abundantly despite endometriosis!

Through the combined efforts of healthcare providers, researchers, advocacy groups, and the endometriosis community itself, we can ignite hope and empowerment for teens affected by this condition. By breaking the silence and fostering a supportive environment, we can ensure that no young person feels alone in her battle against endometriosis. Together, we can unveil the silent struggle and pave the way for a future where endometriosis no longer defines the lives of those affected but rather serves as a testament to their resilience and strength.

REFERENCES

https://www.childrensmercy.org/departments-and-clinics/gynecology/endometriosis-in-teens

https://www.yalemedicine.org/news/teens-endometriosis

https://www.medicalnewstoday.com/articles/endometriosis-in-teens

https://willowobgyn.com/blog/endometriosis-in-teens-what-you-need-to-know

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4432718/

Updated Post: August 7, 2024

2 years ago Endometriosis No comment

Endometriosis Vs Cancer Symptoms: How to Tell The Difference

Ovarian cancer and endometriosis are two conditions that can affect a woman’s reproductive system. It is very important to know how they might be related and how they differ. Ovarian cancer is relatively uncommon, with approximately 20,000 new cases found annually in the United States (lifetime risk is 1 in 78). At the same time, millions of women live with endometriosis (up to 1 in 10). Since they share some similar symptoms, you should know the differences between the two to get an accurate diagnosis and proper treatment. This article will explore how to tell the difference between ovarian cancer and endometriosis. 

What is Endometriosis?

Endometriosis is a condition where tissue similar to the lining of the inside of the uterus grows outside of the uterus, such as on the ovaries, fallopian tubes, and other organs in the pelvis and beyond. It can cause pain, infertility, and many other problems. A diagnosis can be suspected by symptoms, blood tests, and various scans, but surgery is the only way to determine if endo is present accurately. 

Symptoms of Endometriosis Include:

• Painful periods
• Pain during sex
• Chronic pelvic pain
• Bloating and pain after eating
• Fatigue
• Infertility

What is Ovarian Cancer?

Ovarian cancer is a type of cancer that begins in the ovaries and Fallopian tubes. It is often called the “silent killer” because it is difficult to detect in the early stages when it is more curable. Similar to endometriosis, a diagnosis can be suspected using scans and blood tests but the only way to be sure is a biopsy, which is usually performed during surgery. 

Symptoms of ovarian cancer may include:

• Bloating
• Pelvic pain or pressure 
• Abdominal pain, initially vague
• Difficulty eating or feeling full quickly
• Urinary symptoms, such as urgency or frequency

So, the symptoms are similar. But there are subtle innuendoes and some clear differences in Endometriosis and Ovarian Cancer findings and symptoms. 

1. Pain: While both endometriosis and ovarian cancer can cause pelvic and abdominal pain, the pain from endometriosis tends to be more cyclical, happening around the time of the menstrual cycle. The pain from ovarian cancer, on the other hand, is often more constant and dull. However, there is a lot of overlap, and endometriosis pain is variable.

2. Bloating: Bloating due to endometriosis can come and go and is usually caused by intestinal gas caused by endo-induced inflammation and related conditions such as small intestinal bacterial overgrowth (SIBO). Ovarian cancer bloating can also be due to gas and an accumulation of a fluid called ascites. This bloating of ovarian cancer usually worsens and does not come and go. 

3. Age: Endometriosis is typically diagnosed in women of reproductive age, while the most common type of ovarian cancer is usually found in women over 50. Again, there is some overlap, and endo can persist into menopause, or symptoms can even begin after menopause.  

4. Family history: Women with a family history of ovarian cancer are at a higher risk of developing the disease, and there are genetic links that can be tested for. Conversely, endometriosis does not have a clear genetic link but also runs in families. 

5. Symptom duration: The symptoms of endometriosis tend to develop gradually over time (years), while the symptoms of ovarian cancer may come on more suddenly (weeks to months), and bloating can be more pronounced and unremitting.  

In general, ovarian cancer presents an immediate threat to life. Endo, on the other hand, presents a lifelong threat to the quality of life, which may stretch over decades. Unfortunately, the two can overlap because the risk of developing ovarian cancer in women with endometriosis is elevated by 1.5 to 3-fold. That worrisome increase in risk still represents a tiny percentage. But even a fraction of one percent of millions of women means thousands or tens of thousands can be affected. Expert opinion from a specialist and possibly genetic testing can help determine your risk. Research is underway to discover gene-driven biomarkers that will allow more accurate diagnosis. 

It is important to note that both endometriosis and ovarian cancer can have overlapping symptoms, and some women may end up with both conditions simultaneously. If you are experiencing any of the symptoms mentioned above, it is important to talk to your healthcare provider. Many other conditions can cause the symptoms listed. But it’s better to be safe than sorry if they seem to persist and not go away. In other words, for example, everyone can have a bout of stomach flu with bloating, nausea, and painful diarrhea, but it usually passes over a few days to a week. Any unusual symptoms that go longer than that should be evaluated.

Conclusion

In conclusion, endometriosis and ovarian cancer are distinct conditions affecting the female reproductive system. While they share some similar symptoms, such as pelvic pain, there are substantial differences that can help distinguish between the two. By understanding the differences between endometriosis and ovarian cancer, you and your doctor can take appropriate steps to get the right diagnosis and treatment.  

Getting an expert opinion from a specialist can be critical to get you on the right path for diagnosis and treatment. But, in a situation where you may be worried about both endo and cancer, perhaps because you are older or have a worrisome family history, what type of specialist should you seek for that opinion? In most cases, a general gynecologist can point you in the right direction. But if the concern is not heard and you are left wondering, an endometriosis specialist would be a good bet if endo seems to be most likely. If both are a concern due to your symptoms, age, or family history, then a gynecologic oncologist may be the better bet or an additional opinion to seek. There are a few gynecologic oncologists out there that truly specialize in both endo and ovarian cancer.  

Serdar EB et al Epithelial Mutations in Endometriosis: Link to Ovarian Cancer. Endocrinology 2019 Mar 1;160(3):626-638.

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Understanding the Connection between Endometriosis and Cancer Risk

Endometriosis and cancer are very different conditions, but unfortunately, they share some connections. Endometriosis is a benign, painful condition where the tissue that resembles the internal lining of the uterus grows outside of it inside your abdomen and pelvis (and sometimes beyond), causing inflammation and scarring. That reaction causes pain and usually impacts fertility as well. On the other hand, cancer is an uncontrolled malignant growth of abnormal cells that can spread throughout the body and kill.

While endometriosis is not cancerous, it can still act like cancer by directly invading tissues and organs or spreading through the lymphatic and blood systems. Research suggests that there may be molecular links between endometriosis and certain types of cancer, rooted in genetics and epigenetics (the study of how your environment turns genes on and off). Here’s what you need to know.

The overall endometriosis and cancer risk of developing cancer of different types seems to be slightly increased in women with endometriosis. Additional studies point to increased cancer risk in patients with the closely related condition of adenomyosis. The reasons for this are unclear, although molecular connections are being uncovered, and the risk differs by cancer type. 

Endometriosis and Cancer Risk Transformation

Endometriosis cells themselves can directly transform or degenerate into cancer. The specific types are clear cell, endometrioid, and, more rarely, stromal sarcoma. No one knows the exact percentage because of the under-reporting of both endometriosis and these cancer transformation events. However, the estimation is only a fraction of 1%. This transformation is a tiny percentage, but if you consider that millions of women have endometriosis, even a tiny percentage means tens of thousands of women may be at risk. 

Endometriosis and Cancer Risk for Ovarian

Endometriosis has been linked to an increased risk of developing certain types of ovarian cancer. Studies have found that women with endometriosis are more likely to develop clear cell and endometrioid ovarian cancers than women without the condition. In fact, the risk is estimated to be between 1.5 to 3 times higher in women with endometriosis. The risk is highest when endometriosis significantly involves the ovaries, such as the presence of endometriomas. 

The reasons for this link are not entirely clear. Still, it is thought that the inflammation and scarring caused by endometriosis may increase the risk of cancerous mutations or epigenetic events in the cells. It’s important to note that while the risk has increased, most women with endometriosis will not develop ovarian cancer. However, just as with direct malignant transformation, a small percentage of millions of women with endo can still mean thousands to tens of thousands of women can be affected.  

Endometriosis and Thyroid Cancer

A smaller but statistically significant 1.4-fold higher risk for thyroid cancer has been consistently reported in multiple studies. The reason for this is unknown, but some researchers suggest this link may be based on autoimmunity disorders, which can be shared between endometriosis, thyroid disease, and cancer.

Endometriosis and Breast Cancer

There is also some evidence to suggest that there may be a tiny link between endometriosis and breast cancer, amounting to only about 4% increased risk. Other studies point to a somewhat higher risk. However, this link is not as well established as the link between endometriosis and ovarian cancer, and more research is needed to confirm it.

Endometriosis and Cervical Cancer

Unlike ovarian and breast cancer, there is no clear link between endometriosis and cervical cancer. In fact, a handful of studies suggest that there may be a reduced risk of cervical cancer in women with endometriosis. The reason for this is unknown. 

Endometriosis and Cancer Risk

While one might think there may be an association with uterine endometrial cancer, this may or may not be the case. A recent meta-analysis (review of multiple studies) suggested no risk, while other studies have reported a significantly increased risk of endometrial cancer in women with endometriosis and adenomyosis. 

Similarly, there is conflicting information regarding colorectal cancer or skin cancers, including melanoma, leukemia, lymphoma, urinary cancers, and gastric or liver cancer. Of note, while a number of studies reported no increased risk for colon cancer, one study suggested the risk may be as high as thirteen-fold.

Managing Your Endometriosis and Cancer Risk

If you have endometriosis, it’s important to be aware of the potential risks of cancer and take steps to manage your risk. These steps may include regular cancer screening, maintaining a healthy lifestyle, and talking to your doctor about any concerns. In some cases, you may have a genetically founded increased risk. If cancer and/or endometriosis runs in the family, it may be best to consult with an expert. If you are older and have endometriosis, it may also be best to seek expert consultation. It’s important to be aware and proactive, but it’s also important to remember that while the risk may be increased, most women with endometriosis will not develop cancer.

Endometriosis and Cancer: A Systematic Review and Meta-Analysis 

Marina Kvaskoff, Yahya Mahamat-Saleh, Leslie V Farland, Nina Shigesi, Kathryn L Terry, Holly R Harris, Horace Roman, Christian M Becker, Sawsan As-Sanie, Krina T Zondervan and more.

Human Reproduction Update, Volume 27, Issue 2, March-April 2021, Pages 393–420,

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Endometriosis vs. PCOS: What’s the Difference?

Endometriosis and Polycystic Ovary Syndrome (PCOS) are two distinct conditions that profoundly impact the lives of countless people assigned female at birth (AFAB). While these disorders both impact the menstrual cycle and share concerns regarding fertility, they are fundamentally different in their underlying causes, manifestations, and treatment approaches. Unraveling the intricacies of these conditions is crucial for accurate diagnosis, effective management, and improved quality of life for those affected.

Understanding Endometriosis: A Journey Beyond the Uterus

Endometriosis is a complex disorder characterized by the abnormal growth of endometrial-like tissue outside the uterus. These lesions are mediated by hormones and respond to the hormonal fluctuations of the menstrual cycle, leading to inflammation, scarring, and the formation of adhesions or cysts. Endometriosis can affect various organs within the pelvic region, including the ovaries, fallopian tubes, bladder, and intestines, causing a range of debilitating symptoms.

Symptoms of Endometriosis

• Severe pelvic pain, particularly during menstrual periods (dysmenorrhea)
• Heavy or prolonged menstrual bleeding (for some individuals, not all)
• Painful intercourse (dyspareunia)
• Intestinal discomfort, such as diarrhea, constipation, or bloating, and dyschezia
• Urinary problems, like frequent urination or painful urination (dysuria)
• Infertility or difficulty conceiving
• Chronic fatigue and exhaustion

Potential Causes and Risk Factors

While the exact cause of endometriosis remains elusive, several theories have been proposed to explain its development:

• Retrograde menstruation: This theory suggests that during menstruation, endometrial cells flow backward through the fallopian tubes and implant in the pelvic cavity or other organs, and under the influence of various factors, they become endometriosis lesions. While this theory has long been thought to be the cause, evidence suggests otherwise.
• Embryonic cell migration: Endometrial-like cells may originate from embryonic cells that migrate to other areas during fetal development and become endometriosis lesions.
• Immune system dysfunction: An impaired immune system may fail to recognize and eliminate misplaced endometrial tissue, allowing it to proliferate.
• Genetics and family history: Endometriosis tends to run in families, suggesting a potential genetic component.

Exploring Polycystic Ovary Syndrome (PCOS): A Hormonal Imbalance

Polycystic ovarian syndrome (PCOS) is not classified as a disease but as a syndrome involving a number of factors that affect people assigned to females at birth during the reproductive years. It is characterized by an imbalance of reproductive hormones, primarily involving excess production of androgens (testosterone and DHEA), anovulatory cycles, insulin resistance, and infertility, resulting in a range of symptoms and complications, including irregular menstrual cycles, infertility, and metabolic issues.

Symptoms of PCOS

• Irregular or absent menstrual periods
• Excessive hair growth (hirsutism) on the face, chest, or back
• Acne or oily skin
• Thinning hair or male-pattern baldness
• Weight gain or difficulty losing weight
• Ovarian cysts (although not present in all cases)
• Infertility or difficulty conceiving

Potential Causes and Risk Factors

The exact cause of PCOS is not fully understood, but several factors are believed to contribute to its development:

• Insulin resistance: Insulin resistance, a condition in which the body’s cells become less responsive to insulin, can lead to elevated levels of insulin and androgens.
• Genetics: PCOS tends to run in families, suggesting a genetic component.
• Obesity: Being overweight or obese can exacerbate insulin resistance and hormonal imbalances associated with PCOS; however, the inflammatory nature of the disease may also be the cause of obesity.
• Inflammation: Chronic low-grade inflammation may play a role in the development of PCOS.

Distinguishing Endometriosis from PCOS: Key Differences

While endometriosis and PCOS are associated with menstrual problems, there are several distinct differences that set these conditions apart:

1. Hormonal Imbalances: Endometriosis is associated with estrogen and progesterone resistance, while PCOS is characterized by excess androgen production.
2. Menstrual Irregularities: Women with endometriosis often experience painful periods, while those with PCOS may have irregular or absent periods due to anovulation (lack of ovulation), which is not associated with pain.
3. Ovarian Cysts: While ovarian cysts are not always present in PCOS, they are a common feature of the condition and are often small cysts. In contrast, endometriosis can cause the formation of endometriomas (a type of endometriosis ) on the ovaries.
4. Pain and Discomfort: Endometriosis is often associated with severe pelvic pain, painful intercourse, and gastrointestinal discomfort, whereas these are not associated with PCOS.
5. Fertility Challenges: Both conditions can contribute to infertility, but the underlying mechanisms differ. Endometriosis can cause scarring and adhesions that interfere with fertility, while PCOS often leads to anovulation and hormonal imbalances that disrupt ovulation and conception.
6. Metabolic Complications: PCOS is closely linked to metabolic disorders such as insulin resistance, obesity, and an increased risk of developing type 2 diabetes, while these associations are less common in endometriosis; instead, endometriosis is often associated with other auto-immune conditions.

Diagnostic Approaches: Unraveling the Mysteries

Diagnosing endometriosis and PCOS can be challenging, as both conditions share some overlapping symptoms and may require a combination of tests and evaluations.

Diagnosing Endometriosis

• Medical History and Physical Examination: A healthcare provider will gather information about symptoms, menstrual history, and family history of endometriosis.
• Pelvic Exam: A pelvic examination may reveal abnormalities, such as ovarian cysts or scarring, which can indicate the presence of endometriosis.
• Imaging Tests: Ultrasound or magnetic resonance imaging (MRI) may be used to visualize endometrial lesions, cysts, or other abnormalities in the pelvic region.
• Laparoscopy: This minimally invasive surgical procedure involves inserting a small camera into the abdomen to directly visualize and potentially biopsy (remove a tissue sample) any endometriosis lesions. .

Diagnosing PCOS

• Medical History and Physical Examination: A healthcare provider will gather information about menstrual irregularities, hirsutism (excess hair growth), acne, and other symptoms associated with PCOS.
• Blood Tests: Blood tests may be performed to assess hormone levels, including androgens, luteinizing hormone (LH), follicle-stimulating hormone (FSH), and insulin levels.
• Pelvic Ultrasound: An ultrasound examination can help identify the presence of ovarian cysts or other abnormalities in the ovaries.
• Exclusion of Other Conditions: PCOS is often diagnosed by ruling out other potential causes of irregular periods or androgen excess.
• Combination of Symptoms: PCOS typically requires three of four specific criteria, including the presence of ovarian cysts, signs or symptoms of androgen excess, insulin resistance, and anovulatory cycles. 

Treatment Strategies: Tailored Approaches for Optimal Outcomes

The treatment of endometriosis and PCOS is tailored to each individual’s specific needs, taking into account factors such as symptom severity, fertility goals, and overall health status.

Treatment Options for Endometriosis

• Pain Management: Over-the-counter or prescription pain medications, such as nonsteroidal anti-inflammatory drugs (NSAIDs), may be prescribed to alleviate pelvic pain and menstrual cramps.
• Hormone Therapy: Hormonal treatments, such as birth control pills, progestin-only therapy, or gonadotropin-releasing hormone (GnRH) agonists, may have some impact on suppressing the growth of endometriosis  and managing symptoms, though these options are only short-term while on the medications and can have some serious side effects.
• Surgery: In some cases, surgical interventions may be recommended to remove endometrial lesions or cysts, or to address complications such as adhesions or scarring.
• Lifestyle Modifications: Adopting a healthy diet, regular exercise, stress management techniques, and other lifestyle changes can help manage endometriosis symptoms and improve overall well-being.

Treatment Options for PCOS

• Lifestyle Modifications: Weight loss through a balanced diet and regular exercise can help improve insulin sensitivity, regulate hormone levels, and alleviate symptoms of PCOS.
• Insulin-Sensitizing Medications: Drugs like metformin may be prescribed to improve insulin sensitivity and regulate menstrual cycles.
• Hormonal Therapy: Birth control pills or other hormonal contraceptives can help regulate menstrual cycles, reduce androgen levels, and alleviate symptoms like hirsutism and acne.
• Fertility Treatments: For women with PCOS struggling with infertility, medications like clomiphene citrate or letrozole may be prescribed to induce ovulation, or assisted reproductive technologies like in vitro fertilization (IVF) may be recommended.

Coping Strategies: Embracing Holistic Well-Being

Both endometriosis and PCOS can have a profound impact on physical, emotional, and mental well-being. Adopting a holistic approach that addresses various aspects of health can be beneficial in managing these conditions and improving overall quality of life.

Emotional and Mental Health Support

• Seek counseling or join support groups to cope with the emotional challenges associated with endometriosis or PCOS.
• Practice stress-reduction techniques, such as mindfulness meditation, yoga, or deep breathing exercises, to manage anxiety and promote relaxation.
• Prioritize self-care activities that bring joy and fulfillment.

Lifestyle Modifications

• Maintain a balanced and nutritious diet rich in anti-inflammatory foods, such as fruits, vegetables, whole grains, and lean proteins.
• Engage in regular physical activity, tailored to individual capabilities and preferences, to promote overall health and well-being.
• Establish a consistent sleep routine and prioritize adequate rest and relaxation.

Complementary and Alternative Therapies

• Explore complementary and alternative therapies, such as acupuncture, herbal remedies, or massage therapy, which may help alleviate symptoms and promote relaxation.
• Consult with healthcare professionals before incorporating any alternative therapies to ensure safety and compatibility with existing treatments.

Endometriosis and PCOS: Navigating the Journey Together

While endometriosis and PCOS are distinct conditions, it is possible for some individuals to experience both simultaneously. In such cases, a comprehensive and collaborative approach involving multiple healthcare professionals, such as gynecologists, endocrinologists, and fertility specialists, may be necessary to address the unique challenges and develop a personalized treatment plan.

Seeking Support: Empowering Advocacy and Awareness

Endometriosis and PCOS can be isolating and misunderstood conditions, which is why seeking support and raising awareness are crucial. By connecting with support groups, advocacy organizations, and healthcare professionals, individuals can access valuable resources, share experiences, and contribute to advancing research and understanding of these conditions.

Conclusion: Embracing Hope and Resilience

Endometriosis and PCOS present unique challenges, but with proper diagnosis, tailored treatment strategies, and a supportive network, individuals can navigate these conditions with resilience and hope. By understanding the distinctions between endometriosis and PCOS and embracing a holistic approach to well-being, women can reclaim control over their health and pursue their dreams with confidence and determination.

REFERENCES

https://www.medicalnewstoday.com/articles/endometriosis-vs-pcos

https://www.aucmed.edu/about/blog/endometriosis-vs-pcos-explained

https://www.aucmed.edu/about/blog/endometriosis-vs-pcos-explained

https://www.healthline.com/health/womens-health/endometriosis-vs-pcos

https://www.kofinasfertility.com/patient-info/pcos-and-endometriosis

Updated: August 9, 2024

2 years ago Endometriosis 2 comments

Endometriosis Pain After Orgasm: Understanding and Managing Post-Sex Discomfort

Introduction

Endometriosis is a chronic condition which is manifested by tissue similar to the internal uterine lining grows outside the uterus, often causing severe pelvic pain.  This is due to direct nerve stimulation, inflammation and central nervous system sensitization and hyperactivity.  One significant, yet often overlooked, aspect of endometriosis pain is the discomfort experienced after orgasm. So here are the causes, treatments, and management tips for dealing with pain after sexual intercourse in patients with endometriosis.

Causes of Pain After Orgasm

Pain after orgasm in endometriosis patients can be attributed to a number of factors:

1. Pelvic Floor Spasms: The pelvic floor muscular contractions which normally occur during orgasm can exacerbate pain due to the hypersensitivity of the pelvic region affected by endometriosis (Falcone & Flyckt, 2018).
2. Adhesions and Scar Tissue: Endometriosis causes scarring and adhesions, which can cause organs to stick together (e.g. rectum to the upper vagina and cervix), leading to pain during and after deep penetration.
3. Inflammation: Endometriosis lesions release inflammatory substances, which exacerbate molecular neuro-signaling, which can increase pain post-sex.
4. Uterine Contractions: During orgasm, uterine contractions can trigger pain, especially if there are endometriosis lesions on or around the uterus.
5. Tilted Uterus: A retroverted or tilted uterus, common in endometriosis, can also contribute to pain during and after intercourse.

Symptoms to Watch For

• Abdominal Pain: Often sharp or cramping, exacerbated by deep penetration.
• Pain with Deep Penetration: Aggravated by certain sexual positions.
• Vaginal Dryness: Can cause friction and pain but may not be related to end

Treatment and Management Options

Pain Relief and Medication

1. Nonsteroidal Anti-inflammatory Drugs (NSAIDs): Medications like ibuprofen can reduce inflammation and provide pain relief before and after intercourse.
2. Hormonal Treatments: Birth control pills or GnRH agonists help manage estrogen levels, potentially slowing the growth of endometriosis tissue and associated pain. However, these can produce other symptoms, some of which can be long-lasting and affect health.  These should be decided upon under expert guidance. 

Surgical Therapy

If endometriosis is suspected or if you already have this diagnosis, a cornerstone of therapy is surgical excision of endo and endo-related scarring or fibrosis, and clearing of adhesions which cause organs like the uterus and rectum to be stuck together. Surgically excising diseased tissue and scar removes the inflammatory stimulus which leads to pain.  This surgery also restores normal anatomy and relationships between the uterus, the vagina, the rectum and bladder.  

Physical Therapies

1. Pelvic Floor Physical Therapy: Helps strengthen and relax the pelvic muscles, reducing spasms and pain.  This may be combined with vaginal diazepam. 
2. Heat Therapy: Applying a heating pad to the lower abdomen can help alleviate cramping and discomfort.
3. TENS: Transcutaneous electrical nerve stimulation, and related similar therapies including implantable units, can be an inexpensive method to help reduce pelvic floor dysfunction using very specific applicators. 

Lifestyle and Integrative Approaches

1. Diet and Nutrition: An anti-inflammatory diet rich in omega-3 fatty acids, antioxidants, and low in processed foods can help manage symptoms.
2. Stress Management: Techniques like yoga, meditation, and acupuncture can help reduce overall stress and pain levels.
3. Acupuncture: In expert hands, acupuncture can be effective to relax the pelvic floor and stimulate blood flow to the area.  
4. Red Light Therapy: This therapy reduces inflammation and promotes healing, potentially alleviating pain post-orgasm (Hamblin, 2017).

Sexual Health Tips

1. Use of Lubricants: To combat vaginal dryness and reduce friction during intercourse.
2. Open Communication: Discussing pain and preferences with your partner can help adjust sexual activities to reduce discomfort.
3. Experimenting with Sexual Intercourse Positions: Finding positions that avoid deep penetration can minimize pain.

Addressing Related Conditions

Other conditions such as ovarian cysts, uterine fibroids, and a tilted uterus can also contribute to pelvic pain during sexual activity. A comprehensive evaluation by a gynecologist who specializes in pelvic pain and, if endo is suspected or known to exist, involvement by an endometriosis specialist is crucial to rule out these conditions and tailor treatment accordingly.

Conclusion

Endometriosis-related pain after orgasm and pain with intercourse in general is a challenging circumstance, but with the right combination of treatments and management strategies, it can be significantly improved or eliminated. It is very prudent to consider an opinion with a endometriosis surgical excision expert.  

References

1. Falcone T, Flyckt R. Clinical Management of Endometriosis. Obstet Gynecol. 2018;131(3):557-571. doi:10.1097/AOG.0000000000002460. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6078976/
2. Ferrero S, Evangelisti G, Barra F. Current and Emerging Treatment Options for Endometriosis. Expert Opin Pharmacother. 2018;19(11):1109-1125. doi:10.1080/14656566.2018.1507067. https://pubmed.ncbi.nlm.nih.gov/30096049/
3. Zondervan KT, Becker CM, Missmer SA. Endometriosis. N Engl J Med. 2020;382(13):1244-1256. doi:10.1056/NEJMra1810764. https://pubmed.ncbi.nlm.nih.gov/32212520/
4. Hamblin MR. Mechanisms and applications of the anti-inflammatory effects of photobiomodulation. AIMS Biophys. 2017;4(3):337-361. doi:10.3934/biophy.2017.3.337. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5523874/

Updated Post: July 10, 2024

2 years ago Endometriosis No comment

Understanding and Finding Relief from Endometriosis Cramps

If you’re living with endometriosis, you’ve likely experienced the intense cramping and pain that comes along with it. Endometriosis is a chronic condition that can seriously impact your life with pain, cramps, and other symptoms. But there are ways to find relief and get back to living your life. Let’s review endometriosis cramps and how you can relieve endometriosis cramps.

What is Endometriosis?

Endometriosis is a chronic condition in which tissue similar to the lining inside the uterus grows outside of it. This tissue growth can cause severe pain and inflammation during menstruation and throughout the month. Common symptoms include painful periods, cramps, heavy bleeding, pelvic pain, infertility, and fatigue.

Endometriosis Cramps

Endometriosis cramps are most commonly present in the lower abdomen or pelvis. Patients describe the cramps as sharp and stabbing, severe gnawing or throbbing, and feel like their insides are being pulled down. Cramps might start before the period and last several days. Common causes of cramps include stress, inadequate sleep, and inflammatory foods such as alcohol and red meat.

Finding Support for Endo Pain Management

Living with chronic pain can be difficult for anyone, but resources are available for those with endo pain management needs. Local support groups are excellent options for those seeking community support from individuals who understand firsthand what they are going through. Many online communities also exist where individuals can share their experiences and offer support to one another while learning more about managing their condition on a daily basis. It’s important to remember that you don’t have to suffer alone if you are living with endo pain management needs—there are plenty of resources out there ready to help!

Managing-Endometriosis-Cramps

Getting rid of endometriosis cramps needs treating endometriosis and its inflammation. Besides excision surgery and medical management of endometriosis, which are the pillars of endometriosis care, lifestyle modification might have some benefits. Lifestyle habits that might be beneficial include regular exercise, stress management techniques like yoga or meditation, dietary changes such as avoiding processed foods or foods high in sugar or fat, getting enough sleep every night, and taking time for self-care each day. Please consult your doctor for the appropriate care for your cramps.

Endometriosis is a common chronic condition affecting many people worldwide each year. While there is no cure yet for this condition, there are ways to manage its symptoms, such as endo cramps through lifestyle changes, medication options as prescribed by your doctor, or even surgery if necessary. Additionally, online resources and local support groups provide invaluable community support for those living with this condition, so they don’t have to go through it alone! Whether you’re just beginning your journey towards finding relief from endo cramping or have been dealing with this issue for years, you deserve access to resources and care that will help make your life easier!

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Three Types of Endometriosis

Endometriosis is a medical condition that affects an estimated 10% of women in the U.S. alone. It occurs when tissue similar to the endometrium grows outside the uterus. Endometriosis can cause pain and other symptoms that vary in severity depending on your type of endometriosis. Let’s look at the different types of endometriosis and what they mean for your health.

Endometriosis Types

There are three main types of endometriosis, each with its symptoms and treatments. The three categories are superficial peritoneal, ovarian cysts, and deep infiltrating. Here’s a brief overview of each type:

Superficial Peritoneal Endometriosis: This type involves growths on the surface layer of tissue lining the abdomen (the peritoneum). These growths usually appear as small spots or lesions. They can cause pain during periods or intercourse. Treatment typically includes surgery, medication, or lifestyle modification, depending on the patient’s preference and symptoms.

Deep Infiltrating Endometriosis: This type involves growths penetrating deeper into tissues and organs. It can cause extensive scarring, severe pelvic pain, and difficulty getting pregnant. Treatment for this type may include surgical removal of the endometriosis lesions, medical therapy, lifestyle modification, and physical therapy. Deep infiltrating endometriosis can impact any organ in the body, such as the bowel, bladder, diaphragm, etc.

Ovarian Cysts: Also known as “chocolate cysts” because they contain dark-colored tissue and blood. These cysts form on or near the ovaries and can cause pain. Treatment for ovarian cysts may include the removal of the cyst through surgery. 

Endometriosis is a complex condition with many potential treatments available. In general, there are three types of endometriosis which include superficial endometriosis, deep infiltrating endometriosis, and endometrioma. The type of endometriosis might impact your treatment plan. It’s important to talk with your doctor about your specific case so that you can better understand your diagnosis and treatment options in the future. If you are experiencing any concerning symptoms related to endometriosis, such as pelvic pain or painful sex, make sure you get checked out by a qualified healthcare professional who can provide further guidance on managing your condition effectively!

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What Would Happen to the Signs and Symptoms of Endometriosis After Menopause?

Endometriosis during menopause was first recognized over fifty years ago. But, because it is reported in only about 2-5% of women with endo, it is simply not discussed much. The actual percentage may be higher, but the talking points still focus on endometriosis somehow going away after menopause. This is simply not true in all endo patients; in some cases, endo can even start after menopause. 

Unfortunately, there is still much unknown about endometriosis after menopause. Some studies have shown that the severity of symptoms may lessen with age. In contrast, others have found that endometriosis can worsen after menopause, especially when you consider adenomyosis of the uterus which can persist for decades into menopausal years. So, managing the symptoms for many women suffering from this condition becomes a lifelong battle. Suppose you are experiencing pelvic pain or intestinal symptoms that may be related to endometriosis near or after menopause. In that case, it’s important to talk to your doctor about your options for accurate diagnosis and treatment.

Managing Endometriosis During Menopause

Whether it be endometriosis resolving or the effects of prior surgery, scarring is one of the normal processes your body uses to heal. Either persistent active endo or adenomyosis or the scars or fibrosis on various organs and the peritoneum can cause persistent symptoms. Assuming you do not take estrogen replacement with a known history of endometriosis, estrogen in your body still exists in varying amounts because your fat cells convert other hormones or toxins into estrogen. On top of that, the amount of estrogen required to make endo grow varies between individuals, and estrogen is not the only molecular driver to make endo grow. For all these reasons, pain from endo persists into menopause in at least 2-5% of patients. The treatment overlaps regardless of why the symptoms may be present but is not exactly the same.

Reducing the Severity of Endometriosis Symptoms During Menopause

What about surgery? Since accurate blood test biomarkers are still not available, surgery can’t be ignored as a possible part of the plan. Regardless of whether it is persistent endo or newly developing endo, scars from endo healing or progressive scarring from prior excisions, expert evaluation for possible surgical intervention should be a cornerstone in planning. Based on a risk vs. benefit discussion with an expert surgeon, a consult with an expert is the best way to determine what is going on after menopause. This consult can help form the best treatment plan beyond the excision of endometriosis, scar, or even possible hysterectomy. If, for example, persistent adenomyosis is the cause of your pain, then surgery may be hands down the best option to eliminate the pain. 

If active endo is responsible for the symptoms, it is possible to reduce symptom severity through some general adjustments. This adjustment includes diet and lifestyle modifications. Reducing stress levels by finding calming activities like yoga or meditation, eating an anti-inflammatory diet high in fiber (to absorb excess estrogen in the gut), and engaging in regular physical activity can all help ease endometriosis pain in some. These are general recommendations and depend on what else, like SIBO or irritable bowel syndromes, may be going on.  

Combining mainstream medication options with integrative support could significantly reduce the discomfort of endometriosis symptoms post-menopause, allowing many women a chance to reclaim their quality of life. The following are some specific considerations. 

Taking Hormone Replacement Therapy (HRT)

Taking hormone replacement therapy (HRT) is an important treatment decision. HRT is a form of medication that uses hormones to relieve menopausal symptoms. If the uterus is still present, then both estrogen and progesterone are required in order to reduce the risk of uterine cancer. If not, then estrogen replacement therapy (ERT) alone may be better because this means a lower risk of developing breast cancer. However, it is controversial whether HRT or ERT can make endo grow. Scientific data suggests that HRT may be better in this regard, but this is not clear-cut. Similarly, it is unclear if herbal or plant-based estrogen replacement is safe, and, based on complex molecular biology factors, it is probably different in each individual. Always keep in mind that your body is never in a zero-estrogen state because your fat cells convert other hormones into estrogen, and toxins you are constantly exposed to (xenoestrogens) can also factor in.

Taking Pain Relievers Like Ibuprofen or Acetaminophen

Taking pain relievers like ibuprofen or acetaminophen might be an effective way to manage intermittent mild to moderate endometriosis pain. Of course, there are side effects that are usually mild, which must be balanced when compared to the benefit of longer-term use. A pain specialist may recommend using stronger medications such as narcotics, gabapentin, or related drugs. Generally, it is not recommended to take any of these medications continuously. More importantly, relying on pain medications alone is like putting a band-aid on a gaping wound without repairing the wound. A better strategy is to deal with the root cause and try to correct it. Determining if the root cause for pain is endo or adenomyosis related in menopause requires a consult with an endometriosis specialist and, ideally, one who specializes in peri and postmenopausal endo.

Reducing Stress with Relaxation Techniques Like Yoga or Meditation

Yoga and meditation have been demonstrated to effectively mitigate stress levels, which may reduce endometriosis-related symptoms. How this happens is poorly understood, but it may be mediated by cortisol level alterations or epigenetic regulation of pain receptor-related gene expression. This is a very subjective area and hard to study objectively, but research is ongoing. One can’t go wrong with this option because it does not carry risk and can benefit your health in multiple ways. 

Exercising Regularly

Regular exercise is a meaningful way to maintain physical and mental health, whatever your age or circumstances. For endometriosis patients, in particular, being physically active can help reduce inflammation and adapt the body’s response to pain. Studies have also shown that regular workouts may help endometriosis sufferers manage endocrine problems, anxiety, and stress levels. With physical exercise, endometriosis patients benefit from improved quality of sleep too. So this is another low-risk lifestyle modification that can reap many benefits. 

Pelvic Floor Therapy

The inflammation from endometriosis and/or direct nerve impingement at the pelvic floor can cause pain in menopause, just like during the reproductive years. The muscles and fascia over-react and spasm, which can be relieved with pelvic floor physical therapy. In some cases, it can help with fibrosis or scar-related pain by restoring normal motion. Usually, this requires a program and is not a one-time deal, so a consultation with a pelvic floor therapist is definitely worth considering. Pelvic floor therapy may or may not be the solution for you. If pain persists, surgical options may still need to be considered to get to the root of the problem.

Don’t Suffer with Prolonged Severe Symptoms

After menopause, many women find that their endometriosis and other symptoms still impact their life significantly, even if they follow prudent diet and lifestyle modifications. If you are in this situation, don’t hesitate to speak to an endometriosis expert about the potential benefits and risks of surgery and other treatment options available. Molecular markers for endo may be coming soon, but today surgery is the only way to accurately diagnose endo. Especially when pain persists into menopause or starts in menopause, other conditions may be the cause or overlapping endometriosis and adenomyosis. Surgical treatment may or may not be the right answer for you, but expert guidance and complete evaluation is better than waiting the pain out and hoping it will go away. 

2 years ago Endometriosis No comment

Explaining Endometriosis Pain

Endometriosis is a complex condition affecting over 176 million people worldwide. It can cause pain and other difficult symptoms to explain to friends, family, and medical professionals. Understanding the basics of endometriosis and how to explain its pain can help you advocate for your health. Let’s take a closer look at what endometriosis is and how to discuss its symptoms.

What Is Endometriosis?

Endometriosis is a chronic disorder that occurs when tissue similar to the lining of the uterus grows outside the uterus. This tissue can grow on ovaries, fallopian tubes, or other organs in the pelvic area. Common symptoms include intense cramping during menstruation, pelvic pain throughout the month, and heavy menstrual bleeding. Other common signs include digestive issues like constipation, nausea, or diarrhea; fatigue; painful intercourse; and infertility.

What Does Endometriosis Pain Feel Like?

Endometriosis pain can vary from person to person depending on where the endometrial tissue is. Some common symptoms include pelvic cramping before and during periods; sharp pains in the lower abdomen; pain during or after sex; painful bowel movements; lower back pain; painful urination during periods; and bloating all month long. For some women living with endometriosis, these symptoms may be mild enough to ignore or easily manage with over-the-counter medications like ibuprofen or acetaminophen. However, for many others, these symptoms are severe enough to interfere with their daily activities and require medical intervention for relief.

Explaining Your Endometriosis Pain

If you have been diagnosed with endometriosis, it’s crucial to articulate your condition and its associated pain to get the help you need from medical professionals, friends, and family members. One helpful way to explain your symptoms is by comparing them to something relatable—for example, if you experience sharp pains as part of your endo pain cycle, try saying that they feel like “stabbing pains” or “piercing sensations” in your lower abdomen or back. You could also describe any muscle pain as akin to having bad PMS cramps all month long.

When discussing your condition with others, please provide some context about what endometriosis is and why it causes so much discomfort for those suffering from it. This context will help people better understand why your pain levels fluctuate. Additionally, be sure not to downplay any of your experiences. Instead, focus on being honest about how severe your symptoms are and how they directly impact your life. Give at least one or two real-life examples of how endometriosis has disrupted your life.

Endometriosis is an incredibly painful condition that affects many people worldwide every day. Understanding what this condition entails and the language for articulating its associated pains can help those affected by endo get the treatment they need from their peers and medical professionals. Explaining endometriosis pain to someone who hasn’t experienced it firsthand can be not easy. But understanding what exactly endometriosis is and what type of symptoms it can cause can make it easier for you to express how you’re feeling to others. With knowledge comes power, so learn and try to explain it well!

Now let’s hear from you. How would you explain your endometriosis pain?

2 years ago Endometriosis No comment

A Guide to Ultrasound for Endometriosis Diagnosis

Endometriosis is a chronic and often painful condition that affects many people. One way to diagnose endometriosis is with an ultrasound, which can help your doctor identify most abnormalities in the uterus, ovaries, fallopian tubes, or abdomen and pelvis. Read on to learn more about this diagnostic tool and how it can help you better understand your endometriosis.

What Is Endometriosis?

Endometriosis is a condition in which tissue similar to the lining of the uterus grows outside the uterus. This tissue can grow on or near the ovaries, fallopian tubes, bladder, rectum, or other organs. Symptoms of endometriosis include pelvic pain, heavy menstrual bleeding, and infertility. Most commonly experienced by women during their reproductive years, it’s estimated that 1 in 10 women have endometriosis.

How Can Ultrasound Help?

An ultrasound is a noninvasive imaging test that uses sound waves to create an image of organs or tissues inside your body. An ultrasound may help diagnose abnormalities in your uterus, ovaries, fallopian tubes, or other organs resulting from endometriosis. Using Ultrasound, doctors can get images of these organs and look for signs of abnormal growth or other issues associated with endometriosis. Doctors might suggest transvaginal Ultrasound if they need a better vision of some specific area.

 In some cases, such as suspected ovarian cysts—which are prevalent with endometriosis—your doctor may also order additional tests, such as a blood test. These tests measure cancer markers and hormone levels to determine whether they are high. Your doctor might also need an MRI scan if necessary.

What Are the Benefits of Ultrasound for Endometriosis?

Ultrasounds are invaluable tools for diagnosing issues related to endometriosis. That is because ultrasounds are quick and noninvasive procedures that allow doctors to see what’s happening inside your body without resorting to surgery or other invasive measures. Additionally, ultrasounds can provide valuable information about the severity of the condition and allow doctors to develop a treatment plan tailored specifically for you based on those results.

What Are the Downsides of Ultrasound for Endometriosis?

A significant downside to Ultrasound is that it is highly operator dependent and requires high skills. This skill dependence means that if your operator has ample experience, they can detect lesions that another operator with less experience might miss. However, some deep endometriosis lesions are invisible in Ultrasound and seem normal even when an expert performs it. These lesions are mostly deep lesions with less visible abnormal mass. Therefore, a negative ultrasound test could be a false negative. 

All in all, ultrasounds are valuable diagnostic tools for diagnosing endometriosis and other conditions related to reproductive health. They offer detailed images without the need for invasive procedures. Therefore they can provide valuable insight into the severity of the situation so you and your doctor can devise an individualized treatment plan together. However, it has downsides of being operator dependent and unable to detect some endometriosis lesions. If you suspect you have endometriosis or another reproductive health issue, talk with your doctor about whether an ultrasound could help them make an accurate diagnosis sooner rather than later.

2 years ago Endometriosis , Endometriosis Education No comment

Patients Use These Strategies to Manage Endometriosis Flare-Ups

Endometriosis is a chronic condition that affects millions of women, causing pain and discomfort. Flare-ups are especially difficult and can be debilitating. Flare-up occurs when the symptoms become exacerbated. Flares amplify symptoms of the disease and ultimately decline after a while. Fortunately, some patients have found ways to cope with flare-ups to manage the pain and other symptoms. Let’s look at some strategies that others use for dealing with endometriosis flare-ups. Please notice that none of these discussions are medical tips.

What Causes Endometriosis Flare-Ups?

Flare-ups often occur when there is a trigger, such as hormonal imbalance, physical activity, stress levels, or certain environmental factors like heat or humidity. These triggers can lead to an increase in pain and discomfort for those affected by endometriosis.

Practice Relaxation Techniques

It can be hard to relax when you’re in the middle of an endometriosis flare-up. But relaxation techniques like meditation and deep breathing can help reduce stress levels and give your mind and body a much-needed break from the pain. If you’re feeling overwhelmed or anxious, try taking some slow breaths or focusing on an object in front of you until your mind calms down. You can also practice progressive muscle relaxation by tensing one muscle group at a time before releasing it. This relaxation will help release tension throughout your body while also helping to lower your heart rate and blood pressure.

Manage Your Stress Levels

Stress is known to trigger endometriosis flare-ups, so it’s important to find ways to manage your stress levels. Exercise is a great way to reduce stress and provide numerous other health benefits, such as improved mood, better sleep quality, and increased energy levels. Yoga is another great option as it combines physical activity with relaxation techniques which can be beneficial for managing endometriosis flare-ups. Other stress management strategies include talking about your feelings with someone who understands what you’re going through or writing in a journal about how you’re feeling.

Take Time for Yourself

When dealing with an endometriosis flare-up, it’s also important to take time for yourself, even if it’s just a few minutes each day! Do something that makes you happy, whether listening to music, reading a book, or watching your favorite movie – whatever brings you joy! Taking time out for yourself will give your mind and body a chance to rest and recharge.

Endometriosis flare-ups can be difficult, but some patients have found ways to cope with them that can make them more manageable. Taking some time out for yourself, practicing relaxation techniques such as meditation or yoga, exercising regularly, managing stress levels effectively, and talking about how you feel are all effective strategies for dealing with endometriosis flare-ups. By taking these steps consistently, people with endometriosis might manage their flares up more easily!

2 years ago Endometriosis No comment

Pregnancy and Endometriosis: What to Expect

Endometriosis is a common health condition in women. It is caused by tissue similar to the lining of the uterus growing outside the uterus. This tissue can cause painful symptoms and can lead to infertility. Although it may seem impossible for those with endometriosis, options are available for those who want to become pregnant. Let’s look at what you need to know about pregnancy and endometriosis.

Treating the Pain of Endometriosis Before Getting Pregnant

When it comes to getting pregnant with endometriosis, one of the first steps should be controlling your pain. The pain associated with endometriosis can make it difficult for some women to conceive, as intercourse becomes too uncomfortable or even dangerous for many patients. It is important to discuss treatment options with your doctor before attempting to get pregnant. Depending on your symptoms, these treatments could range from oral or topical medications, intrauterine devices (IUDs), hormone therapy, and, ultimately, surgery.

Options for Getting Pregnant With Endometriosis

Once your severe pain is under control, you can consider potential fertility treatments to become pregnant. In some cases, simply taking hormone therapies such as Clomid can be enough to help induce ovulation and conception. If this does not work, more invasive techniques such as IUI or IVF (in vitro fertilization) may be used. During IVF, eggs are collected from the woman’s body and combined with sperm in a laboratory dish before being implanted into her uterus. IVF gives doctors greater control over the process than traditional methods of conception. It has a high chance of success because, in this method, you bypass any blockages in the reproductive organs. But pregnancy is still not guaranteed.

Managing Your Symptoms During Pregnancy

Once pregnant, you must manage your symptoms carefully to ensure healthy delivery and minimize any risks associated with endometriosis during childbirth. Women who have endometriosis should speak with their doctor regularly throughout their pregnancy so they can monitor any changes in symptoms or side effects that occur due to hormonal changes within the body during pregnancy. Additionally, it is essential that women who have had fertility treatments closely follow their doctor’s instructions regarding diet and exercise.

For many women suffering from endometriosis, getting pregnant can seem impossible—but this doesn’t have to be true! By speaking with an expert about endometriosis treatment options and following any instructions during pregnancy, women with endometriosis might be able to successfully conceive and carry a baby full-term. Ultimately, becoming pregnant and delivering a healthy baby despite having endometriosis is possible but might require extra steps and close monitoring for everything to go smoothly!

2 years ago Endometriosis No comment

How to Get an Endometriosis Diagnosis

Endometriosis is a common disorder. According to the Office on Women’s Health, it affects an estimated 1 in 10 women between the ages of 15 and 44. Although endometriosis can be painful, one can manage it with the proper diagnosis and treatment. So if you think you have endometriosis, here’s how to get an appropriate diagnosis.

Seek Out a Medical Professional

The first step in getting an endometriosis diagnosis is to seek help from a medical professional. If you already have one, start by discussing your symptoms with them, mention the word endometriosis, and ask for their advice on how to proceed. It’s important to note that endometriosis can manifest itself in different ways depending on the individual, so it’s essential to talk about all of your symptoms with your doctor or gynecologist.

Get Tested

After speaking with your doctor or gynecologist, they may recommend getting tested for endometriosis. The most common diagnostic tests are ultrasound imaging and laparoscopy (a minimally invasive surgical procedure). Ultrasound imaging uses sound waves to create images of internal organs and tissues, which can help identify abnormalities associated with endometriosis. But ultrasound can still miss some endometriosis lesions. So if the ultrasound results came negative, there is still a chance you have endometriosis. Laparoscopy involves surgically inserting a thin tube (called a laparoscope) into the abdomen through small incisions. Then surgeons look inside the abdominal cavity for any signs of endometriosis. The surgeon typically takes several biopsies to send for histopathology to confirm endometriosis. Histopathology is the gold standard of diagnosis for endometriosis.

Follow Up Care

Once you receive your positive test results, you must follow up with your doctor or gynecologist for further care and advice on managing your symptoms, such as pain, bloating, fatigue, and infertility. Depending on the severity of the condition, your doctor may recommend lifestyle changes such as diet modifications or exercise regimens, as well as hormonal therapies or medications such as birth control pills or anti-inflammatory drugs. The ultimate treatment for endometriosis is excision surgery, removing the endometriosis lesions from your body. Many experts consider excision surgery the gold standard of treatment for endometriosis. This excision surgery needs an experienced and skilled surgeon to deliver the desired results.

After speaking with your doctor or gynecologist about any possible signs of endometriosis, they may recommend ultrasound imaging or laparoscopic surgery to confirm and properly diagnose it. Once diagnosed, following up with them for additional care is essential to ensure proper management of symptoms and reduce pain levels associated with this disorder. With the right treatment plan, living with endometriosis doesn’t have to be difficult–so don’t hesitate; seek out help today!

Top Endometriosis Specialists/doctors

• Dr. Andrea Vidali
• Dr. Steven Vasilev
• Dr. Gaby Moawad

2 years ago Endometriosis No comment

What to Expect Before and After Endometriosis Surgery

 Endometriosis is a condition that affects millions of people worldwide. As a result, many patients opt for endometriosis surgery to manage the symptoms and reduce the discomfort associated with the disease. If you’re considering endometriosis surgery, you may have questions about what to expect before and after the procedure. Let’s dive into the details.

What Happens Before Endometriosis Surgery?

Your doctor will likely perform some tests before scheduling your surgery, including imaging tests such as an ultrasound or MRI and hormone tests to check your estrogen levels. Your doctor will also take a medical history and discuss your current symptoms to better understand how your endometriosis has progressed. It’s essential, to be honest about medications, allergies, and other health conditions that could affect your treatment options or surgical outcome. There will also be a physical exam, including a pelvic exam. Your doctor tries to learn your body and pinpoint any tumors, pain, or abnormality during this physical exam. The result of that physical exam might guide the surgery strategy.

What Happens During Endometriosis Surgery?

This surgery often needs general anesthesia, so doctors put you to sleep during the surgery. Endometriosis surgery is typically performed laparoscopically or with a robot. That means your surgeon will make three to four small incisions in the abdomen and pelvic area. Then they insert a surgical tool with a tiny camera to help them see inside your body during the procedure. The primary goal of endometriosis surgery is to remove any areas of abnormal tissue or scarring caused by endometriosis growth while preserving healthy tissue as much as possible. Depending on the severity of your condition, the surgeon may remove specific organs partially or entirely to reduce pain and improve fertility outcomes. Your surgeon should discuss these possibilities and ask for your consent before surgery.

What Happens After Endometriosis Surgery?

After your surgery, it’s important to rest for several days or weeks so your body can heal properly. Your doctor may prescribe medications to help manage pain or inflammation during the post-surgical period. You must take these medications exactly as prescribed to minimize potential complications. You should also avoid strenuous activities such as heavy lifting or running during recovery; instead, with your doctor’s permission, stick with light exercises like walking or yoga until your doctor clears you for more demanding activity levels.

Endometriosis is a common condition among patients, but it doesn’t have to impede their quality of life. With modern treatments such as endometriosis surgery, patients can find relief from their symptoms while still preserving healthy tissues whenever possible. It’s crucial for those considering endometriosis surgery to understand what happens before, during, and after the procedure to know what steps they need to take to ensure successful recovery afterward. With proper preparation and informed decision-making about treatment options, you can have less anxiety during this period and get back on track with living your life after surgery.

2 years ago Endometriosis No comment

Understanding the Different Stages of Endometriosis 

Endometriosis is a condition that affects nearly 10% of women in the United States. It occurs when tissue similar to the lining of the uterus grows outside the uterus, causing pain and other symptoms. The severity of endometriosis can vary from person to person and impact the treatment strategy. So it’s essential to know the different stages of endometriosis and how they affect your body. Here we review the most common classification of endometriosis introduced by ASRM (American Society for Reproductive Medicine.)

Stage 1 Endometriosis (Minimal): superficial small lesions or implants outside the uterus or near pelvic organs.  

Stage 2 Endometriosis (Mild): encompasses more and deeper implants in the pelvic area. 

Stage 3 Endometriosis (Moderate): This is a deep infiltrating endometriosis stage. In this stage, many deep implants are in the pelvic area and other body parts. There are small cysts on one or both ovaries. Some adhesions are present in the abdomen and pelvis. 

Stage 4 Endometriosis (Severe): A deep infiltrating endometriosis stage. This is the most severe stage. There are many deep lesions, large cysts on one or both ovaries, and dense abdomen and pelvis adhesions.

Knowing what stage of endometriosis you have can help you understand your condition better and guide your doctor in developing an appropriate treatment plan. If you suspect you have endometriosis, make sure to speak with your gynecologist for proper diagnosis and treatment. No matter what stage you are at with your endometriosis diagnosis, good management will help improve your quality of life and reduce pain and long-term complications from this condition.

2 years ago Endometriosis No comment

Endometriosis and Diarrhea During Ovulation: What You Need to Know

Endometriosis is an often misunderstood condition estimated to affect up to 10% of women. It also affects other gender groups. The primary symptom of endometriosis is pelvic pain, but it can also cause a wide range of other symptoms, including diarrhea. If you are experiencing chronic diarrhea and pelvic pain, it may be worth exploring whether endometriosis could be the cause. 

What is Endometriosis? 

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. Endometriosis can lead to inflammation and scarring in the pelvic area, resulting in many symptoms, from painful periods to infertility. It is unclear what causes endometriosis, but experts believe that hormones, genetics, and immune system issues may play a role. 

Endometriosis and Diarrhea During Ovulation 

Diarrhea is one of the many potential symptoms associated with endometriosis. People with endometriosis may experience chronic diarrhea or bouts of diarrhea during their period or ovulation days. It’s important to note that other conditions could cause similar symptoms, such as IBS (Inflammatory Bowel Symptoms), infections, or food allergies. So if you’re experiencing chronic diarrhea, you must speak to your doctor about getting tested for these conditions and endometriosis.  

The underlying cause of endo-related diarrhea likely involves hormonal imbalances, which result in changes in gut flora and motility (movement) in the intestines. Additionally, inflammation resulting from endo lesions can put pressure on organs like the bladder or intestines, which can contribute to digestive issues like diarrhea. Treatments for this type of symptom include surgery, hormone therapy, diet modification (such as avoiding dairy products), stress reduction techniques, and over-the-counter medications such as Pepto-Bismol or Imodium for short-term relief. Your doctor will help you have a treatment plan based on your specific needs.

If you are experiencing chronic diarrhea along with other symptoms like pelvic pain or cramping, then it may be worth exploring whether endometriosis could be causing your discomfort. Speak with your doctor about getting tested for this condition and other underlying causes, such as IBS or food allergies. Treatment options depend on what type of symptom you’re experiencing. Still, they typically involve surgery, hormone therapy, dietary modifications, stress reduction techniques, and over-the-counter medications for short-term relief while waiting for treatment effects to take hold. If you think you might have endometriosis, don’t hesitate to talk to a doctor today!

2 years ago Endometriosis 2 comments

Managing Endometriosis: What You Need to Know 

Endometriosis is a common condition that occurs when tissue similar to the interior layer of the uterus grows outside the uterus. These pathologic tissues respond to hormones, nutrition, lifestyle, and stress level. Endometriosis can cause pain, fatigue, other symptoms, and infertility. Fortunately, there are several ways to manage endometriosis and reduce its effects on your life. Let’s look at what you need to know about managing endometriosis. 

Can endometriosis be cured completely?

Hormonal Therapy for Endometriosis Management 

Hormonal therapy is one of the most common treatments for endometriosis management. Hormones like progestins and birth control pills work by suppressing ovulation and reducing estrogen levels in the body, which helps reduce the growth of endometriosis tissue. While this treatment may not be suitable for everyone, it can effectively reduce pain and other symptoms associated with endometriosis. But it is not a cure or a permanent solution. You might feel better if you take hormonal therapy, and endometriosis symptoms most likely come back whenever you stop the medication.

Surgery for Endometriosis Management 

Surgery may sometimes be the best choice to treat endometriosis and alleviate its symptoms. Endometriosis surgeons use laparoscopes or robots to remove most endometriosis and adhesions or cysts. After surgery, your doctor may also prescribe hormonal therapy to help keep the condition under control. Your endometriosis surgeon might also recommend physical therapy before or after surgery to help manage symptoms and regain your functions.

Physical Therapy for the Management of Endometriosis

Physical therapists can have a significant impact on your life with endometriosis. They can help you know your body better and understand your limitations. A physical therapist or occupational therapist might be a great resource if you have any pelvic area spasms or movement limitations because of endometriosis pain.

Physical Therapy Before Excision Surgery for Endometriosis

Physical Therapy after excision surgery

Questions to Ask Your Physical Therapist When you have endometriosis

Dietary Changes for Endometriosis Management    

Making dietary changes can also help manage endometriosis symptoms and reduce inflammation in your body. Eating fruits and vegetables—especially those rich in antioxidants—can help reduce inflammation and improve overall health. Avoiding processed foods and refined sugars can also help lessen symptoms associated with this condition. You need a dietitian to help you with this dietary planning. 

Lifestyle Changes for Endometriosis Management

More body fat can mean higher estrogen and higher inflammation levels. Therefore, some healthy changes in your lifestyle to optimize the fat storage in your body can positively impact endometriosis management and symptoms. These changes can mean more physical activity or less junk food, or else. You are the best person to decide what lifestyle you should pursue. Moreover, a healthy lifestyle can improve your mental health and quality of life.

People with endometriosis should talk to their doctor about treatment options that are right for them to manage their condition effectively. In many cases, combining hormonal therapy, surgery, lifestyle, physical therapy, and dietary changes can help reduce pain and other symptoms associated with this condition. The goal should be for you to live a fuller life free from endometriosis effects. With proper management strategies, people with endometriosis can live healthier lives despite their diagnosis!

Find the best endometriosis specialists around the world!

2 years ago Endometriosis 2 comments

Endometriosis Excision Surgery: What You Need to Know About

Endometriosis is a gynecological condition that affects approximately 10% of women between 15-55. It can cause chronic pain, infertility, and other issues. It happens when a similar tissue to tissue that lines the uterus grows outside of the uterus. One way to manage endometriosis is through endometriosis excision surgery. Let’s take a deeper look into what this surgery involves. 

The Procedure 

Endometriosis excision surgery is a procedure in which a gynecologist uses specialized tools and techniques to remove endometriosis tissue from the pelvis, abdomen, and other regions. Excision means removing the tissue from organs near the uterus, such as the ovaries, fallopian tubes, bladder, rectum, or intestines. The doctor will remove any adhesions (scar tissue) causing pelvic pain or threatening fertility. The surgery requires an outpatient surgery center or a hospital operating room.

Benefits of Endometriosis Excision Surgery 

Endometriosis excision surgery aims to reduce or eliminate the pain caused by endometriosis growths, improve fertility outcomes for those who want children, and prevent new growths from developing. In some cases, patients can experience improved symptoms after just one procedure; however, some patients may need multiple surgeries. This need for repeat surgeries depends on the surgeon’s experience, disease behavior and severity, and some unknown factors.

Precautions to Take Before Surgery 

Before undergoing endometriosis excision surgery, you should speak with your doctor about any concerns about anesthesia or other risks associated with the procedure. Additionally, depending on the severity of your condition and your treatment goals (fertility vs. symptom relief), other treatments may need to be considered before considering surgical intervention. 

Talk with your doctor first to ensure that endometriosis excision surgery is right for your needs. If you have questions about this procedure or any other treatments available for managing endometriosis symptoms, don’t hesitate to reach out to your healthcare provider today! They will help you determine if endo excision surgery is a good option.

Have you considered endometriosis excision surgery? What is your most burning question about endometriosis excision surgery?

2 years ago Endometriosis 2 comments

Understanding Endometriosis Through Blood Tests

Endometriosis is a condition in which tissue similar to endometrial cells grows outside the uterus and can cause severe pain, discomfort, and infertility. While many women with endometriosis experience physical symptoms such as abdominal pain or cramping, it can be challenging to diagnose without a medical professional. A blood test is one-way doctors can help narrow down the diagnosis. Let’s explore how this works.

What Can Blood Tests Show? 

Blood tests help measure levels of hormones in the body that could indicate endometriosis. The two most common hormones related to the condition are estradiol (an estrogen hormone) and progesterone (a progestin hormone). High estradiol levels can indicate an imbalance in female hormones, which may be associated with endometriosis. Low progesterone levels suggest an underlying issue with the reproductive system.

In addition, some blood tests specifically measure for markers like CA-125, a protein in high concentrations in some women with endometriosis. By measuring these markers alongside other hormonal levels, doctors can build a better picture of your overall health and determine whether or not you may have endometriosis. 

It’s important to note that blood tests alone aren’t enough to make a definitive diagnosis. Your doctor will likely need to perform additional tests, such as an ultrasound, MRI, or laparoscopy before they can confirm if you have endometriosis. 

While blood tests cannot definitively diagnose endometriosis, they can provide valuable information about your overall health that could help guide diagnosis and treatment decisions. If you think you may be suffering from this condition, you must speak with your doctor so they can determine the best approach for testing and treatment options based on your individual needs. Taking proactive care now will help ensure better long-term outcomes for managing your condition effectively and efficiently!

2 years ago Endometriosis 2 comments

A Guide to Endometriosis Surgery and Its Success Rate

Endometriosis is a condition in which tissue similar to the uterine lining grows outside the uterus. Endometriosis can cause pain, heavy bleeding, and infertility. Women seeking relief from endometriosis symptoms and want to maintain their fertility consider surgery an option. This guide will discuss the types of endometriosis surgery available and their success rates. 

Types of Endometriosis Surgery 

Two types of endometriosis surgery are available: minimally invasive (laparoscopy and robotics) and open abdominal surgery. In a minimally invasive procedure, a thin tube with a camera and tiny surgical instruments are inserted into the abdomen through small incisions in the belly area. During the minimally invasive procedure, surgeons can remove or destroy endometriosis tissue with lasers or other tools. Open abdominal surgery involves making a wide incision in the abdomen to access any affected areas directly and remove them surgically. Most top surgeons with significant experience prefer minimally invasive surgeries with laparoscopy or robotics.

Success Rates 

The success rate of endometriosis surgeries depends on factors such as the severity of symptoms, type of procedure performed, and experience of the surgeon performing the procedure, etc. Patients can achieve complete or partial relief in complaints in up to 93.2% of cases with surgery. And 65% of those wishing for pregnancy but were unsuccessful in the past, could conceive after surgery. Some experts believe success rate increases when additional treatments such as hormone therapy or medications are used following surgery to reduce recurrence risk. But hormonal therapy after surgery is not an option if you plan to conceive right after recovery. Minimally invasive surgery is superior to open surgeries because it results in lower risk of surgical complications, such as bleeding, infection and damage to other abdominal organs. Minimally invasive procedure also offers faster recovery compared to open surgery.

Endometriosis can cause significant physical discomfort and emotional distress for individuals living with it. However, fortunately, some treatments can relieve painful symptoms while still allowing to maintain fertility if desired. Surgery is one such treatment option and provides varying levels of success depending on factors such as experience level, the severity of the disease, and the type of procedure used. Studies have found that up to 93% of patients report partial or complete decreased pain after undergoing endometriosis surgery. And 65% of patients achieved pregnancy after surgery. Talk with your doctor if you think you are suffering from this condition. Discuss testing options and treatment plans, including surgical interventions, so that you can take control of your health today!

Featured specialists:

• Dr. Andrea Vidali
• Dr. Steven Vasilev
• Dr. Gaby Moawad

2 years ago Endometriosis No comment

Can Endometriosis Be Cured Completely?

Endometriosis is a common condition that affects 1 in 10 women between 15 and 55 years old. It occurs when tissue similar to the lining of the uterus grows outside the uterus. Endometriosis can cause painful periods and sex, abdominal pain, and fertility issues. But what exactly is endometriosis, and can it be cured? Let’s take a closer look.

What Causes Endometriosis? 

The exact cause of endometriosis is unknown, but several theories exist about how it develops. One theory suggests that during menstruation, some of the uterine linings flow back through the fallopian tubes and into the abdomen, where it implants and begins to grow. Another theory suggests that stem cells present in the body can transform into endometriosis tissue. 

Can Endometriosis Be Cured Completely? 

Unfortunately, no—endometriosis cannot be cured entirely at this time. However, there are treatments available to alleviate symptoms. These treatments include hormonal medications or surgery, depending on your condition’s severity and preferences. Hormonal medications such as birth control pills or hormone-releasing IUDs may help reduce pain and stop endometriosis growth from progressing further by stopping ovulation and changing hormone levels in your body. Surgery may also be a choice, especially if you have severe symptoms that are not responding to routine treatments. Surgery is also more desirable with deeply infiltrated lesions or cysts on your organs, such as your ovaries or intestines. 

Endometriosis affects millions of women worldwide. Although not curable, you can manage this disease with proper surgery, medical care, and lifestyle plans. Lifestyle steps such as maintaining a healthy diet, exercising regularly, reducing stress levels, and avoiding certain foods known to worsen your symptoms can be helpful. Although there is currently no cure for endometriosis, many treatment options exist that can help minimize symptoms. These treatment options can help you lead a near-normal life and improve pain or fertility issues. If you suspect you have endometriosis, talk to your doctor about available treatments for managing your condition today!

2 years ago Endometriosis No comment

Laparoscopy: A Common Treatment for Endometriosis

Endometriosis is a common condition that mainly affects women of reproductive age. It occurs when tissue similar to the uterine lining grows outside the uterus, typically on other organs in the pelvic area. One of the most common treatments for endometriosis is laparoscopy, a minimally invasive surgical procedure used to diagnose and treat the disorder. Let’s take a closer look at what this procedure entails.

How Laparoscopy Works 

During a laparoscopy, your doctor will insert a thin, lighted tube called a laparoscope through small incisions in your belly. The laparoscope allows your doctor to see inside your abdomen and pelvis and identify areas of endometriosis tissue growth. In some cases, they may also use laparoscopic tools to remove any abnormal tissue growth they find during this process. 

This procedure can be performed in several ways. Your doctor may perform it under general anesthesia, where you are completely asleep during the operation. Depending on what your doctor finds during the laparoscopy, they may perform additional procedures, such as removing cysts or scarring caused by endometriosis. 

Recovery from Laparoscopy 

The recovery time after a laparoscopic surgery depends on several factors, including how extensive the procedure was and how long it took to complete. Most people return home within 24 hours after having this done and can expect to recover fully within two to six weeks with minimal pain or discomfort afterward. You should follow all your doctor’s post-operative instructions, including taking medications as prescribed and avoiding strenuous activities like heavy lifting until your healthcare provider clears you to resume normal activities.

Laparoscopies can be an effective way to diagnose and treat endometriosis in women of reproductive age. This minimally invasive surgical procedure involves inserting thin, lighted tubes into incisions on your belly to identify areas of endometrial tissue growth that could be causing pain and other symptoms. While recovery time varies depending on the procedure’s extent, most people can return home within 24 hours and resume their normal activities within two weeks or so with minimal pain or discomfort afterward. If you think you may have endometriosis, talk to your healthcare provider about whether laparoscopy works for you!

2 years ago Endometriosis No comment

The Different Tests Used to Diagnose Endometriosis 

Endometriosis is a chronic condition characterized by the growth of endometrial-like tissue, which is found throughout the body, primarily in the abdominopelvic cavity, and affects an estimated 176 million women globally. While its exact causes remain elusive, this disorder can inflict debilitating pelvic pain, dysmenorrhea, dyspareunia, and even infertility on those afflicted. However, the path to an accurate diagnosis can be arduous, often spanning years due to the condition’s elusive nature and the lack of a definitive, non-invasive test. In this comprehensive guide, we’ll unravel the complexities of diagnosing endometriosis, exploring the various tests and imaging techniques employed by healthcare professionals to identify this enigmatic condition.

Understanding the Diagnostic Challenges

Endometriosis presents a diagnostic conundrum, as its symptoms can mimic those of other conditions, such as irritable bowel syndrome, interstitial cystitis, or fibromyalgia. Moreover, the severity of symptoms often bears little correlation with the extent of the disease, further compounding the diagnostic challenge. Some women with minimal endometriosis may experience excruciating pain, while others with advanced stages may remain asymptomatic. This unpredictable nature underscores the importance of a multi-faceted diagnostic approach, combining clinical evaluation, imaging techniques, and, in some cases, surgical intervention.

The Importance of Early Diagnosis

Prompt diagnosis is crucial for effective management of endometriosis, as the condition can progress over time, potentially exacerbating symptoms and increasing the risk of infertility. Early intervention can help mitigate long-term impacts, improve quality of life, and enhance fertility outcomes. However, the diagnostic journey can be prolonged, with an average delay of 7 to 10 years from the onset of symptoms, owing to factors such as lack of awareness, normalization of menstrual pain, and the absence of a definitive non-invasive test.

The Role of Clinical Evaluation

The diagnostic process typically commences with a comprehensive clinical evaluation, encompassing a detailed medical history and physical examination. Healthcare providers will inquire about the nature, timing, and severity of symptoms, such as pelvic pain, dysmenorrhea, dyspareunia, and abnormal bleeding patterns. A pelvic exam may reveal signs of endometriosis, such as pelvic masses, nodules, or scarring, although the absence of these findings does not necessarily rule out the condition. They may also order blood work to check hormone levels and screen for other conditions with similar symptoms. 

Imaging Techniques for Endometriosis Diagnosis

While there have been significant improvements in imaging modalities in recent years, most imaging techniques implemented currently cannot definitively diagnose endometriosis. However, they do currently play a crucial role in identifying specific manifestations of the disease and guiding treatment strategies.

Transvaginal Ultrasound

Transvaginal ultrasound (TVUS) is a widely accessible and non-invasive imaging technique that can detect ovarian endometriomas (chocolate cysts) and deep infiltrating endometriotic (DIE) nodules or adhesions. Most people will receive a basic ultrasound, While a basic ultrasound may be able to detect endometriomas and DIE, it lacks efficacy in identifying superficial peritoneal implants. Research focusing on the use of advanced ultrasound shows promise in better detection and earlier diagnosis of endometriosis. Until more providers are trained and routinely use advanced ultrasound, the accuracy of TVUS in diagnosing endometriosis remains limited and highly dependent on the operator’s expertise and experience.

Magnetic Resonance Imaging (MRI)

MRI is particularly valuable in assessing the extent and location of deep infiltrating endometriosis, as well as identifying endometriotic lesions in atypical locations, such as the bladder, ureters, or rectosigmoid region. While more expensive and less readily available than ultrasound, MRI can provide detailed information to aid surgical planning and ensure the involvement of appropriate specialists, if necessary. Similar to TVUS, the ability of the MRI to identify endometriosis also relies on the experience and expertise of the technician taking the images, and the radiologist reading them. 

The Gold Standard: Laparoscopic Surgery

Despite advancements in imaging techniques, laparoscopic surgery remains the gold standard for definitive diagnosis of endometriosis. During this minimally invasive procedure, a surgeon inserts a laparoscope (a thin, lighted instrument) through a small incision in the abdomen, allowing direct visualization of the pelvic organs and potential endometriotic lesions. Tissue samples can be obtained for histological confirmation, providing a definitive diagnosis. Laparoscopies are performed under general anesthesia, so you will not feel anything during the procedure. Laparoscopy not only serves a diagnostic purpose but also offers the opportunity for simultaneous surgical treatment, with excision being the preferred method to remove endometriosis lesions.

Endometriosis can be hard to diagnose because its symptoms are often very similar to other conditions, such as period discomfort, ovarian cysts, or pelvic inflammatory disease. If you think you have endometriosis, you must talk to your doctor as soon as possible so they can determine what type of testing is right for you and how best to treat it. Working with the right healthcare provider ensures you receive the best care possible for managing your condition and improving your overall quality of life.

Comprehensive Management: Beyond Diagnosis

Endometriosis management often requires a multidisciplinary approach, combining medical and surgical interventions tailored to individual circumstances. While surgery is currently the only treatment to address the lesions, several options are recommended for addressing other pain generators and for symptom management, including: 

• Nonsteroidal anti-inflammatory drugs (NSAIDs) and hormonal contraceptives for pain management
• Gonadotropin-releasing hormone (GnRH) agonists or antagonists to suppress ovarian function
• Progestin therapy to inhibit lesion growth 
• Pelvic floor physical therapy to address the myofascial components of pelvic pain and the secondary impact of the endometriosis lesions
• Complementary and alternative medicine such as acupuncture and functional or integrative medicine
• Dietary and lifestyle changes 
• Psychological support and mental health support

Effective management of endometriosis and the impact of living with endometriosis involves addressing all of the pain generators and associated conditions.  A comprehensive approach, incorporating a multidisciplinary approach can significantly improve the overall quality of life for those affected by this challenging condition.

Emerging Diagnostic Approaches

Researchers are actively exploring novel, non-invasive diagnostic methods for endometriosis to reduce the reliance on surgery and improve early detection. One promising area of investigation involves the analysis of endometrial nerve fibers, as studies have shown an increased density of nerve fibers in the endometrium of women with endometriosis compared to those without the condition.

Additionally, researchers are evaluating the potential of serum biomarkers or panels of biomarkers to aid in the diagnosis of endometriosis. While no single biomarker has proven sufficiently accurate thus far, ongoing research aims to identify combinations of markers that can reliably detect the presence and severity of the disease. Other research has focused on better understanding the nature of the disease and factors involved in the mediation of it, including genetics and the influence of the microbiome.

References: 

https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661

https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/diagnose

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880548

https://www.advancedgynaecologymelbourne.com.au/endometriosis/diagnosis

https://www.webmd.com/women/endometriosis/do-i-have-endometriosis

Updated: September 5, 2024

2 years ago Endometriosis No comment

Endometriosis Surgery Risks

Endometriosis is a condition that affects millions of women around the world. Endometriosis occurs when tissue similar to the tissue found in the uterus grows outside the uterus. This can create intense pain and other health complications, such as infertility. While surgery may be an option for some, it is essential to understand the risks associated with endometriosis surgery before making a decision.

Types of Surgery for Endometriosis 

Several types of surgeries exist to treat endometriosis, including minimally invasive (laparoscopy or robotics) and open surgery (laparotomy.) Minimally invasive surgery typically involves making small incisions in the abdomen so that a camera can be inserted into the body to view abnormal endometriosis growths or lesions. Laparotomy involves a larger incision and allows for more extensive examination and treatment. Almost all top endometriosis surgeons worldwide prefer minimally invasive surgery vs. open surgery.

Risks Associated With Endometriosis Surgery 

As with any surgery, there are risks associated with endometriosis surgery. These include bleeding, infection, and nerve damage due to surgery or anesthesia during the procedure. During surgical procedures, there is also a risk of harm to surrounding organs such as the bladder or bowels. Additionally, there is a risk that a surgeon will not remove all of the endometriosis tissue during surgery. This incomplete removal could lead to recurrent symptoms or disease if not appropriately addressed by your doctor post-surgery.

Other Treatment Options for Endometriosis 

Suppose you are concerned about undergoing surgery for your endometriosis. In that case, other treatment options are available such as hormone therapy or medications used to reduce pain and inflammation caused by endometrial growths or lesions. Additionally, lifestyle changes such as exercise and diet might help reduce endometriosis’s associated symptoms without requiring surgery. Speak with your doctor about other options that may work best for you before deciding on any procedure related to your endometriosis diagnosis.

Find the best endometriosis specialists around the world:

• Dr. Andrea Vidali
• Dr. Steven Vasilev
• Dr. Gaby Moawad

2 years ago Endometriosis No comment

Endometriosis Surgery Costs: Everything You Need to Know

Endometriosis is a chronic gynecological disorder that affects many women. One of the treatments for endometriosis is surgery, which can be expensive. This post will discuss what endometriosis surgery costs and how you can manage these costs. 

Endometriosis Surgery

Endometriosis surgery needs minimally invasive tools such as laparoscopy and robotics. The endometriosis surgery usually includes a general anesthetic to reduce pain and discomfort during the procedure. Surgery removes endometrial tissue, scar tissue, and other growths from around the uterus and other organs in the pelvic region. This type of surgery can cost anywhere from $2,500 to $7,500. The cost depends on where you perform the surgery, how severe your endometriosis is, and how long it takes to complete the procedure. 

How You Can Manage Endometriosis Surgery Cost?

Other options are available if you don’t have insurance coverage or if your insurance does not cover the cost of endometriosis surgery. Some hospitals offer payment plans or discounts if you pay all or part of your bill upfront. You may also qualify for financial aid programs or grants provided by local organizations or charities that help cover medical expenses for those with limited incomes. Additionally, some states assist with Medicaid programs that can help cover some or all of your medical costs related to endometriosis treatment. 

It would be best if you spoke with your doctor about your options before deciding which route to take in terms of paying for endometriosis surgery. Your doctor can recommend a hospital that offers discounted rates or a payment plan that makes it easier for you to manage costs associated with treatment. Many healthcare providers also offer free consultations so you can discuss possible treatment options without any additional cost upfront.

Taking care of your body should never come at a heavy price tag — but unfortunately, endometriosis surgery can be costly. That doesn’t mean there aren’t ways to manage those costs, though! From payment plans to financial aid programs and even grants from local organizations, plenty of resources are available if you need help paying for endometriosis-related medical expenses. Talk with your doctor about your options before making any decisions. With the right resources, getting the care you need shouldn’t feel out of reach!

What is your experience about dealing with surgery costs and finding resources?

Featured Specialists:

• Dr. Andrea Vidali
• Dr. Steven Vasilev
• Dr. Gaby Moawad

2 years ago Endometriosis 4 comments

5 Podcasts About Endometriosis to Listen to Right Now

Do you like listening to podcasts and want to learn more about endometriosis? We got you. There are several teams out there trying to make some sense of endometriosis and bring real-world stories as well as education and news to you. Here we are introducing some podcasts that we found interesting. Please keep reading to learn more about these podcasts.

1- In Sixteen Years of Endometriosis

“Laugh, cry, and shout with us as we talk all things endometriosis. We’re 2 witty best friends that pride ourselves on sharing accurate, well-researched information. We delve into all those embarrassing did-that-really-just-happen?! endo stories, talk vulnerably about our personal growth, and share disease facts with a side of humor. We hope our podcast will support and empower you. —Important note on inclusive language: We hadn’t yet been educated about inclusive language when we began our podcast; but after learning, we used this language midway through the show and going forward.”

2- The Cycle

“The Cycle is a podcast about endometriosis stories from patients as well as helpful information about the disease and ways to cope with it. Our goal is to share endo stories from people all over the world to empower you.

Medical disclaimer: THIS PODCAST IS NOT INTENDED FOR THE PURPOSE OF PROVIDING MEDICAL ADVICE. All information, content, and material of this podcast is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider.”

3- Not Defined by Endo

“Not Defined by Endo Podcast, hosted by Endometriosis Warrior Teniola Ogunro, is created for and dedicated to women who have been diagnosed with endometriosis or who suffer from symptoms that they suspect to be caused by endometriosis. Every week, Teniola shares her own experiences, interviews health professionals and endo specialists who provide their much-needed insight and speaks to fellow endometriosis warriors who know what it feels like to live with and fight an incurable disease.”

4- Endometriosis | Journey to Butterfly

“This podcast is about my journey with endometriosis over the last 15 plus years including my present day. I will talk all things endometriosis-symptoms, surgery, medical appointments, medications, natural methods, products, eating habits and more. Support this podcast: https://anchor.fm/journeytobutterfly/support.”

5- Peace With Endo

“Peace With Endo encompasses the journey to naturally managing endometriosis through diet, lifestyle and mindful thinking. Endometriosis impacts your body, mind and spirit. (I know this all too well). All three factors need to be addressed if you’re going to heal. I invite you to join the journey.”

Source : Apple podcast

2 years ago Endometriosis No comment

4 Endometriosis Book You Must Read

Disclaimer: This post is not a paid promotion. iCareBetter does not do affiliate marketing and does not get paid if you decide to purchase any of these books. This post is purely informational, and we do not give any medical advice.

1- Beating Endo

How to Reclaim Your Life from Endometriosis

By Iris Kerin Orbuch MD (Author), Amy Stein DPT (Author)

“Approximately one out of every 10 women has endometriosis, an inflammatory disease that causes chronic pain, limits life’s activities, and may lead to infertility. Despite the disease’s  prevalence, the average woman may suffer for a decade or more before receiving an accurate diagnosis. Once she does, she’s often given little more than a prescription for pain killers and a referral for the wrong kind of surgery. Beating Endo arms women with what has long been missing—even within the medical community—namely, cutting-edge knowledge of how the disease works and what the endo sufferer can do to take charge of her fight against it.”

2- The Endometriosis Health and Diet Program

Get Your Life Back

by Dr. Andrew S. Cook MD FACOG (Author), Danielle Cook MS RD CDE (Author)

“This timely book will dispel the myths surrounding endometriosis and provide scientifically based recommendations that are easy to understand and follow. It offers recommendations on treating root causes rather than just symptoms — it’s a comprehensive, integrative program for treating endometriosis and serves as a starting point for building an individualized program”

3- Know Your Endo

An Empowering Guide to Health and Hope With Endometriosis

by Jessica Murnane  (Author)

“Learn how to navigate your life with endometriosis in this essential and hopeful guide–including tools and strategies to gain a deeper understanding of your body and manage chronic pain through diet, movement, stress management, and more.”

4- The Endo Patient’s Survival Guide

A Patient’s Guide to Endometriosis & Chronic Pelvic Pain

by Andrew S. Cook MD FACOG  (Author), Libby Hopton MS (Author), Danielle Cook MS RD CDE (Author)

“The Endo Survival Guide is the patient’s essential companion to living with and overcoming endometriosis and pelvic pain: from seeking help and getting an initial diagnosis, to navigating treatment options, and achieving optimal relief and wellness.”

Source: Amazon

2 years ago Endometriosis No comment

6 Movies & Documentaries About Endometriosis You Need to Watch

Some popular movies and documentaries about endometriosis.
Disclaimer: we don’t necessarily approve of all the content in these shows. But still the impact of these efforts on raising endometriosis awareness is important. We live in a world where most people haven’t even heard the word “endometriosis.” This leads to gaslighting and dismissal of a lot of patients. Therefore, any efforts like these documentaries and movies can change the life of many.

1- All about NINA – Drama, 97 min

“Nina Geld, a brilliant stand-up comedian onstage but an emotional mess offstage, is forced to face her troubled past when she meets Rafe”

2- Endo what? – Documentary

“Women who are suffering from endometriosis and experts discuss treatments for the disease.”

3- The painful truth – Documentary

“a film about endometriosis and adenomyosis”

4- A thousand needles – Short, 29 min

“A Thousand Needles Film is a documentary about the effects of women’s sexual and reproductive health issues like endometriosis on a woman’s life”

5- End-o – Short, 15 min

“Jaq is a typical young woman, navigating the foibles of life, love and endometriosis.”

6- The resilience of woman in pain – short, 27 min

“Rose has been suffering in silence from endometriosis and chronic illness for years. But it’s beginning to wear her down. An unexpected act of kindness from a stranger shows her the power of human connection during hardship.”

source: IMDB & Google Library

2 years ago Endometriosis No comment

Endometriosis Dictionary:

Endometriosis is a disease that affects at least one in ten women and produces pain and subfertility.  The pain can be related to the menstrual cycle or be related to specific activities like pain during and after sex.  Pain medications may help quality of life but the diagnosis of endometriosis and effective treatment is rooted in surgical excision and some hormone therapy, which may be mainstream or integrative or holistic in some cases.  There is a lexicon of terms that comes with understanding endometriosis including the following: 

Term	Definition	Phonetic Spelling
Abdominal Cavity	The space within the abdomen that houses the intestines, liver, and other organs.	/ab·doh·mi·nuhl kav·i·tee/
Ablation	The removal or destruction of tissue using heat, laser, or other methods.	/uh·blay·shun/
Adhesions	Bands of scar tissue that bind organs together.	/ad·hee·zhuhnz/
Adenomyosis	A condition in which endometrial-like tissue exists within and grows into the uterine muscle wall.	/ad·uh·noh·my·oh·sis/
Amenorrhea	The absence of menstruation.	/ay·men·uh·ree·uh/
Analgesic	A medication that reduces or eliminates pain.	/an·uhl·jee·zik/
Anovulation	The absence of ovulation.	/an·ov·yuh·lay·shun/
Aromatase Inhibitors	Drugs that inhibit the enzyme aromatase, reducing estrogen levels.	/uh·roh·muh·tayz in·hib·i·terz/
Biopsy	A medical test involving the extraction of sample cells or tissues for examination.	/bye·op·see/
Bilateral Oophorectomy	Surgical removal of both ovaries.	/bye·lat·uh·ruhl oh·uh·fuh·rek·tuh·mee/
Catamenial Pneumothorax	A rare condition where air leaks into the space between the lungs and chest wall during menstruation.	/kat·uh·mee·nee·uhl noo·moh·thor·aks/
Cervix	The lower part of the uterus that opens into the vagina.	/sur·viks/
Chocolate Cyst	Ovarian cysts filled with old blood, also known as endometriomas.	/chaw·klit sist/
CO2 Laser	A laser used in surgical procedures to cut or vaporize tissue.	/see·oh·too lay·zer/
Cul-de-sac	The area between the uterus and the rectum where endometriosis commonly occurs.	/kull·duh·sak/
Deep Infiltrating Endometriosis (DIE)	Severe form of endometriosis that invades deeper tissues.	/deep in·fil·tray·ting en·doh·mee·tree·oh·sis/
Dyschezia	Painful bowel movements, often associated with endometriosis.	/dis·kee·zee·uh/
Dysmenorrhea	Painful menstruation.	/dis·men·uh·ree·uh/
Dyspareunia	Painful intercourse.	/dis·puh·roo·nee·uh/
Endocrinologist	A doctor who specializes in the endocrine system, which regulates hormones.	/en·doh·kri·nah·luh·jist/
Endometrioma	A type of cyst formed when endometrial-like tissue grows in the ovaries.	/en·do·me·tree·oh·muh/
Endometriotic Lesions	Areas of endometrial-like tissue growth outside the uterus.	/en·doh·mee·tree·ot·ik lee·zhunz/
Endometrium	The inner lining of the uterus that thickens and sheds during the menstrual cycle.	/en·do·mee·tree·um/
Endometriosis	A condition where tissue similar to the lining inside the uterus grows outside it.	/en·do·mee·tree·oh·sis/
Endovaginal Ultrasound	An ultrasound test performed via the vagina to get a closer look at the reproductive organs.	/en·doh·vaj·in·uhl ul·truh·sownd/
Estrogen	A hormone that plays a key role in the development of female reproductive tissues and secondary sexual characteristics.	/es·truh·jen/
Excision Surgery	A surgical procedure to cut out endometriosis tissue.	/ek·si·zhun sur·juh·ree/
Fallopian Tubes	Tubes that carry eggs from the ovaries to the uterus.	/fuh·loh·pee·uhn toobs/
Follicle-Stimulating Hormone (FSH)	A hormone involved in the development of eggs in women and sperm in men.	/fol·i·kul stim·yuh·lay·ting hor·mohn/
Gonadotropin	Hormones that stimulate the activity of the gonads (ovaries and testes).	/goh·nad·oh·troh·pin/
Gonadotropin-releasing Hormone (GnRH) Agonists/Antagonists	Drugs that reduce estrogen production by affecting the pituitary gland.	/goh·nad·oh·troh·pin ree·lees·ing hor·mohn ag·oh·nist/
Hormone Replacement Therapy (HRT)	A treatment used to relieve symptoms of menopause by replenishing estrogen and progesterone.	/hor·mohn ree·plays·muhnt thair·uh·pee/
Hysterectomy	Surgical removal of the uterus.	/his·tuh·rek·tuh·mee/
Hysterosalpingography	An X-ray procedure to examine the inside of the uterus and fallopian tubes.	/his·ter·oh·sal·pin·goh·grah·fee/
Implantation	The process by which a fertilized egg attaches to the lining of the uterus.	/im·plan·tay·shun/
In Vitro Fertilization (IVF)	A procedure in which eggs are fertilized by sperm outside the body and then implanted in the uterus.	/in vee·troh fur·tuh·luh·zay·shun/
Infertility	The inability to conceive after one year of unprotected intercourse.	/in·fur·til·i·tee/
Interstitial Cystitis	A chronic bladder condition causing bladder pain and frequent, urgent urination.	/in·ter·stish·uhl si·sty·tis/
Laparoscopy	A surgical procedure involving small incisions and the use of a camera to diagnose or treat conditions.	/lap·uh·ros·kuh·pee/
Laparotomy	A surgical procedure involving a large incision through the abdominal wall to gain access to the abdominal cavity.	/lap·uh·rot·uh·mee/
Laparoscopic Excision	A minimally invasive surgical technique used to remove endometriosis lesions.	/lap·uh·roh·skop·ik ek·si·zhun/
Lupron	A medication used to treat endometriosis by suppressing estrogen production.	/loo·pron/
Menarche	The first occurrence of menstruation.	/men·ahr·kee/
Menopause	The time in a woman’s life when menstrual periods permanently stop.	/men·uh·pawz/
Menorrhagia	Heavy menstrual bleeding.	/men·uh·ray·jee·uh/
Myometrium	The muscular layer of the uterine wall.	/my·oh·mee·tree·um/
Neurectomy	Surgical removal of a nerve or part of a nerve.	/noo·rek·tuh·mee/
Oophorectomy	Surgical removal of one or both ovaries.	/oh·uh·fuh·rek·tuh·mee/
Oral Contraceptives	Birth control pills that contain hormones to prevent pregnancy.	/awr·uhl kon·truh·sep·tivz/
Ovarian Cyst	A fluid-filled sac within the ovary.	/oh·vair·ee·uhn sist/
Ovary	The female reproductive organ that produces eggs and hormones.	/oh·vuh·ree/
Pelvic Floor Dysfunction	A condition where the muscles and tissues supporting the pelvic organs are weakened.	/pel·vik flawr dis·funk·shun/
Pelvic Inflammatory Disease (PID)	Infection of the female reproductive organs.	/pel·vik in·flam·uh·tor·ee dih·zeez/
Peritoneum	The membrane lining the abdominal cavity and covering the abdominal and pelvic organs.	/per·i·toh·nee·um/
Progesterone	A hormone involved in the menstrual cycle, pregnancy, and embryogenesis.	/proh·jes·tuh·rohn/
Progestins	Synthetic hormones similar to progesterone.	/proh·jes·tinz/
Rectovaginal Septum	The tissue between the rectum and the vagina.	/rek·toh·vaj·in·uhl sep·tuhm/
Reproductive Endocrinologist	A doctor who specializes in reproductive hormones and fertility issues.	/ree·proh·duk·tiv en·doh·kri·nah·luh·jist/
Resection	Surgical removal of part of an organ or structure.	/ri·sek·shun/
Retrograde Menstruation	The backward flow of menstrual blood into the pelvic cavity.	/re·troh·grayd men·stroo·ay·shun/
Retroverted Uterus	A uterus that tilts backward instead of forward.	/reh·troh·vur·tid yoo·tuh·rus/
Robotic Surgery Salpingectomy	Minimally invasive laparoscopic surgery enhanced by robotic tech Surgical removal of one or both fallopian tubes.	/roh·bot·tick sir·jury/
Sonohysterography	An ultrasound procedure to examine the inside of the uterus.	/soh·noh·his·ter·oh·grah·fee/
Subfertility	Reduced level of fertility characterized by unusually long time to conceive.	/sub·fur·til·i·tee/
Transabdominal Ultrasound	An ultrasound test performed through the abdomen.	/tranz·ab·doh·mi·nuhl ul·truh·sownd/
Transcervical	Through the cervix.	/tranz·sur·vik·uhl/
Transvaginal Ultrasound	An imaging test using sound waves to look at the reproductive organs.	/tranz·vuh·jy·nuhl ul·truh·sownd/
Ultrasound	An imaging method that uses high-frequency sound waves to capture live images from inside the body.	/uhl·truh·sownd/
Uterine Fibroids	Noncancerous growths in the uterus.	/yoo·ter·in fye·broidz/
Uterus	The organ in the female reproductive system where a fetus develops.	/yoo·tuh·rus/
Vaginal Atrophy	Thinning, drying, and inflammation of the vaginal walls due to decreased estrogen.	/vaj·in·uhl at·ruh·fee/
Vaginismus	Involuntary muscle spasms in the pelvic floor muscles.	/vaj·in·iz·muhs/
Vulvodynia	Chronic pain or discomfort around the opening of the vagina.	/vuhl·voh·din·ee·uh/

Updated Post: July 16, 2024

2 years ago CEO Message , Endometriosis , Endometriosis Education No comment

Why was iCareBetter Built?

A message from Dr. Saeid Gholami, the founder and CEO at iCareBetter:

The story behind the movement

When I used to practice as a primary care doctor, I saw patients’ struggles to find doctors that could do proper endometriosis surgery. Endometriosis patients often came back to our clinic month after month without change in their pain and suffering. Many patients had multiple failed surgeries. That was because almost all gynecologists claimed expertise in endometriosis surgery. Unfortunately, patients could not differentiate truly skilled gynecologists from others for treating endometriosis. One specific patient that I still think of after a decade was a thirty-five years old lady with rectal bleeding during her periods. I recall her coming back every month until everyone believed she was seeking attention. And no one could help her. We tried hard to find endometriosis surgeons for the patients, but no doctor would be able to show enough knowledge and expertise to earn our trust. Some of them claimed endometriosis expertise, but after a couple of questions, we realized that they could not manage the complexity of this disease.

Someone needs to stand up and build a solution when there is a problem. That is how the world has improved since the beginning of humanity. And it was our turn to make something to enhance the world of endometriosis patients. We created iCareBetter to help patients find doctors who possess the knowledge and surgical skills needed for endometriosis treatment. iCareBetter makes the search for endometriosis doctors much more effortless and removes the randomness of finding an endometriosis specialist. By having a platform of peer-vetted endometriosis surgeons, patients can focus on finding a doctor that will match their criteria and personal needs. Criteria such as location, cost, team, and areas of expertise can define a patient’s path to recovery. And patients do not have to worry about the doctor’s basic understanding, empathy, and skills of endometriosis care.

Searching for an endometriosis surgeon is very hard. Most of the time, you have no idea about their surgical skills and whether they will be able to treat your case. iCareBetter evaluates gynecology surgeons for their skills in managing different types and locations of endometriosis. Their surgical expertise is peer vetted, so their ability to do safe surgery. We bring endometriosis specialists closer to patients. 

What is iCareBetter’s mission? 

To help endometriosis patients receive efficient care. To educate patients on endometriosis, to better understand endometriosis and patient’s needs. Patients wait years to receive a diagnosis, are sent to various specialties, and undergo multiple surgeries, and very few people take their pain seriously. iCareBetter mission is to improve endometriosis patients’ lives by providing them with what is needed the most; doctors that can handle each individual’s unique case.

Who is behind iCareBetter? 

I, Dr. Saeid Gholami, am the founder of iCareBetter. I have training as an MD, MBA, and MS in Digital Technology. My training is not in OBGYN, and at the moment, I do not provide care to patients. I founded iCareBetter with my financial resources and then had some family and friends invest in the company to support us. None of the investors are related to the current doctors on the website. And none of the doctors on the website have any ownership or leadership position in the company.

Last words

Like every other life-changing initiative, ours started with a personal story and someone who wanted to make a change. My personal goal has been to improve patients’ lives at the minimum cost for them. And we are just at the beginning of the road. There are many patients with endometriosis who need help. And we have several problems to solve for the patients and the community. Nothing will stop us as long as endometriosis patients use iCareBetter to find hope and care for their debilitating pain and suffering.

2 years ago CEO Message , Endometriosis , Endometriosis Education 2 comments

What Are The Cost Drivers For Running iCareBetter?

From the beginning of iCareBetter, money has always been questioned. Some think iCareBetter should offer services for free to providers because it costs nothing. But there is a high administration cost for running iCareBetter. The charges come from educating patients and providers about endometriosis and quality of care, maintaining and improving the website, and responding to patients’ and providers’ requests and questions. I am going to share our costs with you in this article.

The costs for operating iCareBetter:

Education About Endometriosis and the Importance of Expert Provider

It takes an average of 10 years for a person with endometriosis to get a proper diagnosis. Then several years go by, trying various hormones, artificial menopause, and suboptimal surgeries. After many years and multiple failed treatments, a patient might find an expert who understands endometriosis and how to treat it. We at iCareBetter want to cut that time to less than a year and help patients connect with the expert endometriosis provider as soon as possible. Achieving this goal requires extraordinary efforts in educating the public, patients, and providers. Therefore, we are responsible for making educational content and distributing it on the internet. Content creation and distribution are crucial for raising awareness about endometriosis, the importance of skilled surgery, and fighting misinformation. And it costs money and takes significant effort to create and distribute good educational content about endometriosis.

Reviewing Doctors’ Applications 

iCareBetter takes a significant financial loss on each application; please continue reading for more explanation. After we receive an application with three full surgical videos (mostly between 2-4 hours long), our team has to de-identify all documents and prepare the videos and questionnaire for reviewers. It takes 5-10 hours per application, costing us about $500 on average to prepare the application for review. Then we send the videos and the rest of the applications to reviewers and follow up with them multiple times to submit their reviews. After the reviewers send their reviews, they get compensated for their time. Compensating the reviewers cost us, on average, $350 per application. Therefore on each application, we spend $850 and only charge $400. Consequently, we lose $450 on reviewing each application.

Website Maintenance, APIs, and Optimization

iCareBetter has an online website core to its services to patients and providers. Providers use the website to apply for vetting. Patients use search engines and many other features on the website to find doctors and learn about endometriosis. Almost all of these features are paid plugins, apps, or APIs. Moreover, there is a sophisticated web developing team behind iCareBetter to deliver the results to our community. Keeping a high-quality website that serves patients and providers with high standards is costly.

Answering Questions from Patients and Providers

Every day our team receives many questions and inquiries from patients, advocates, and providers. It is our responsibility to answer them. Here are some examples:

• Patients: 

“Do you have a doctor in region X?”

“Does doctor Y accept new patients?”

“I can not get someone from Dr. Y’s office to answer me, has their phone number changed?”

“Why does the link to this article is broken?”

• Doctors:

“How can I join the platform?”

“I am changing my office location; please update my info.”

“I want to apply for more specialized surgery areas. How can I do that?”

Every question we receive from a patient or a doctor is our top priority. These questions can define the care plan or the surgery outcome for one or more patients. So we are committed to answering these questions. And answering questions needs the time and focus of a reliable person. And this is another layer of costs added.

Final words

The list of costs does not stop here, but I hope you have seen enough information to justify our desire to make money to keep iCareBetter alive. It costs to run a website that aims to be patient-centric, uplifts the community, and brings transparency to the endometriosis community for a better patient outcome.

Please let us know what you think about this matter.

2 years ago Endometriosis , Endometriosis Education

Pelvic floor dysfunction

Another condition that can have overlapping symptoms with endometriosis is pelvic floor dysfunction (PFD). PFD involves abnormal functioning of the pelvic floor muscles (Grimes & Stratton, 2020). The muscles can be too tight (hypertonia), too lax (hypotonia), or just not coordinate appropriately (Grimes & Stratton, 2020). Fraga et al. (2021) reports that those with deep infiltrating endometriosis (DIE) had higher pelvic floor hypertonia, weaker muscle contraction, and inability to completely relax the pelvic floor muscles. They also noted shortening of the anterior thigh, piriformis, and iliotibial band muscles (Fraga et al., 2021). PFD can be seen frequently in those with endometriosis “even after surgical excision of the endometriosis lesions” (Hunt, 2019).

Shrikhande (2020) reports:

“The presence of endometriosis in the pelvis can cause a secondary chronic guarding of pelvic floor musculature. This chronic guarding state leads to nonrelaxing pelvic floor dysfunction and myofascial trigger points (MTrPs)…. The pelvic floor muscles in nonrelaxing pelvic floor dysfunction are short, spastic, weaker and poorly coordinated…. Myofascial trigger points (MTrPs) are short contracted taut bands of skeletal muscle that often co-exist with nonrelaxing pelvic floor dysfunction… Once formed, MTrPs can become a self-sustaining source of pain even after the endometriosis has been excised. Active MTrPs serve as a source of ongoing nociception; they can decrease pain thresholds, upregulate visceral and referred pain patterns, and sensitize the nervous system contributing to both peripheral and central sensitization. Therefore, it is important to treat a hypertonic nonrelaxing pelvic floor and associated MTrPs in endometriosis patients.”

For more information see: https://icarebetter.com/pelvic-floor-dysfunction

References

Fraga, M. V., Oliveira Brito, L. G., Yela, D. A., de Mira, T. A., & Benetti‐Pinto, C. L. (2021). Pelvic floor muscle dysfunctions in women with deep infiltrative endometriosis: An underestimated association. International Journal of Clinical Practice, 75(8), e14350. DOI: 10.1111/ijcp.14350

Grimes, W. R., & Stratton, M. (2020). Pelvic floor dysfunction. https://www.ncbi.nlm.nih.gov/books/NBK559246/

Hunt, J. B. (2019). Pelvic Physical Therapy for Chronic Pain and Dysfunction Following Laparoscopic Excision of Endometriosis: Case Report. Internet Journal of Allied Health Sciences and Practice, 17(3), 10. Retrieved from https://nsuworks.nova.edu/cgi/viewcontent.cgi?article=1684&context=ijahsp 

Shrikhande, A. A. (2020). The consideration of endometriosis in women with persistent gastrointestinal symptoms and a novel neuromusculoskeletal treatment approach. Archives of Gastroenterology Research, 1(3). https://www.scientificarchives.com/article/the-consideration-of-endometriosis-in-women-with-persistent-gastrointestinal-symptoms-and-a-novel-neuromusculoskeletal-treatment-approach

2 years ago Endometriosis No comment

Physical Therapy After Excision Surgery

Why do you get a referral for Physical Therapy after excision surgery?

• Endometriosis is a chronic condition and it takes almost 10 years to diagnose the condition in most cases. 
• The women suffer from severe pain and disability before they are really diagnosed with endometriosis. Pain leads to muscle guarding and spasms which leads to further limitation in mobility and function.
• Muscle guarding can also affect fascial mobility. Fascia covers our body from head to toe, it covers the muscles and organs and connects muscle to muscle and muscle to organ. Any fascial restrictions can affect the mobility of the organ and body and also function.
• Decreased mobility can affect the circulation and lymphatic draining. Many women present with blood stasis and swelling of pelvic region- vulva, discoloration and sometimes itching.
• Some women with endometriosis can present with the descend of a small intestine between uterus and rectum and it pushes the wall of vagina, it is called “enterocele”.
• Surgery can lead to scar tissue and muscle guarding which can affect the normal biomechanical movement. 
• Many women have pain and pelvic floor dysfunction after surgery which can affect the function.

How does fascial mobility affect the pelvic floor function?

• Facia lines from Amygornall.com
• The abdominal fascial restrictions from guarding can affect the mobility of the fascia of the large and small intestine. Scar tissue after surgery can also affect the abdominal fascial mobility.

• This is image is taken from Grey’s Anatomy
• The restrictions of the fascia around cecum (ascending colon on right side) and sigmoid colon (descending colon on left side) can affect bowel movement- many women have constipation, diarrhea, pain after bowel movement, bloating, and food intolerance. Constipation is defined as 

1. Small palates, hard stools, straining
2. Not able to empty bowels completely
3. Less than 3 spontaneous bowel movements a week
4. The patient has to do manual maneuver to pass the stool
5. Straining with stools can lead to pelvic floor dysfunction and increase the risk of prolapse
6. Bristol stool scale helps to understand the consistency of stool and relation to constipation. As if you have bowel movement everyday does not mean you are not constipated. Bristol stool scale 1-2 is considered as constipation, 3-4 is considered as normal bowel movement as long as the person is not straining while doing bowel movement, 5-7 is considered as diarrhea

The restrictions of fascia around the bladder can cause

The image is taken from Grey’s Anatomy

1. Increase in urinary urgency and frequency
2. Bladder fascia shares the fascia with pelvic floor through urethra and it can cause stress/urge or both urinary incontinence.
3. Bladder fascia also shares the fascia with obturator foramen where obturator internus muscle attaches. Obturator internus muscle is one of the major rotator muscles of the hip. Restrictions of bladder fascia can affect the mobility/mechanics of the hip and also can cause pain. Many women with hip pain without any pathology might have a connection to the bladder fascia. They always have one of the bladder symptoms such as urgency/frequency/burning of urination or incontinence.

• Anatomically small intestine sits on the bladder. The small intestine moves up and allows the bladder to fill. If the fascial mobility of the small intestine is limited or if the small intestine has descended, the bladder does not get enough room to fill and that leads to increase in urgency and frequency.

• The image is taken from Sloan Kettering Institute – research 
• The diaphragm and pelvic floor work as a piston during the breathing. When we breathe in, the diaphragm moves down along with the pelvic floor and when we breathe out they both move up. Breathing mechanics is very important for pressure mechanics- that means it provides stability, keeps the organ continence, pelvic floor function, lymphatic draining, and reduces the strain on joints. The factors can affect the breathing mechanics

1. Abdominal fascial restrictions
2. Shallow breathing from pain
3. Decreased mobility of fascia of diaphragm/pelvic floor

• The image is taken from Grey’s Anatomy
• The restriction of fascia can affect the circulation and lymphatic drainage. Many women have pelvic congestion and also swelling of vulva and itching.

How can Physical Therapy help?

Goals of Physical Therapy are

• Reduction of pain
• Improve posture
• Improve mobility of muscle/fascia and organ to improve biomechanics and movement of the body
• Improve circulation and lymphatic drainage

The Physical Therapist have to perform detailed evaluation on fascial mobility, joint mechanics, muscle guarding pattern, posture, any swelling or signs of congestion, bowel and bladder function, sexual function, pelvic floor muscle function, lumbar spine/sacroiliac joint mobility and stability, breathing mechanics, load transfer, and central sensatization. I have found great success with fascia mobilization on abdomen/chest wall/diaphragm, and around the abdominal organ/pelvic floor muscles to reduce pain, improve mobility, circulation, breathing mechanics, bowel/bladder function and overall well being.

About the author

The author of this article, Neha Golwala, PT, DPT  is a vetted endometriosis physical therapist. With more than 10 years of experience, she works at Zuppa Physical Therapy P.C. in New York. Neha uses manual therapy techniques including myofascial release, joint mobs, and neurominetic energy. She is an expert in the development of posture awareness and connecting mind to body to recover from injuries and prevent injuries and improve performance.

2 years ago Endometriosis , Endometriosis Education

Pelvic Congestion Syndrome- another cause of chronic pelvic pain

When talking about endometriosis and chronic pelvic pain, it is important to remember that often endometriosis is not the only pelvic pain generator. Another possible contributor to chronic pelvic pain is pelvic congestion syndrome (PCS). “Pelvic congestion syndrome (PCS) accounts for up to 30% of patients presenting with chronic pelvic pain” (Reardon & Dillavou, 2021). There isn’t a significant amount of data about endometriosis and PCS, but one study found “the prevalence of ovarian varices in patients with endometriosis was 80%, whereas the control group was only 26.1%” (Pacheco & de Oliveira, 2016).

PCS is like having varicose veins in the pelvis. Blood pulls in the veins and can cause symptoms such as heaviness, pain with penetration, noncyclical pain, positional lower back pain, pelvic and upper thigh pain, prolonged postcoital discomfort, symptoms that worsen throughout the day and are exacerbated by activity or prolonged standing, and non-specific lower abdominal and pelvic pain (Durham & Machan, 2013; Mistry & le Roux, 2017). The cause of PCS is not clear, but it is associated with obstructions such as iliac vein compression (i.e., MTS) or left renal vein compression (i.e., Nutcracker syndrome) (Reardon & Dillavou, 2021).

For more information see: https://icarebetter.com/pelvic-congestion-syndrome/

References

Durham, J. D., & Machan, L. (2013, December). Pelvic congestion syndrome. In Seminars in interventional radiology (Vol. 30, No. 04, pp. 372-380). Thieme Medical Publishers. Retrieved from https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0033-1359731

LIANG, D. E., & Brown, B. (2021). Pelvic congestion syndrome: Are we missing the diagnosis?. The Medical Republic. Retrieved from https://www.sydneyfibroidclinic.com.au/app/uploads/2021/06/PCS-Medical-Republic.pdf

Mistry, P. P., & le Roux, D. A. (2017). Pelvic congestion syndrome (PCS). Practice Perspectives for Venous Disorders, 46. Retrieved from http://www.vascularsociety.co.za/wp-content/uploads/2019/02/VASSA-venous-guidelines-Practice-perspectives-for-venous-disorders-2017.pdf#page=46

Pacheco, K. G., & de Oliveira, M. R. F. (2016). The prevalence of ovarian varices in patients with endometriosis. Annals of Vascular Surgery, 34, 135-143. https://www.annalsofvascularsurgery.com/article/S0890-5096(16)30232-1/fulltext

Reardon, E. S., & Dillavou, E. D. (2021). Venous disease—What we still do not know. In Vascular Disease in Women (pp. 157-163). Academic Press. https://www.sciencedirect.com/science/article/pii/B9780128229590000031

2 years ago Endometriosis , Endometriosis Education

Fibroids

We have been looking at some of the related conditions that can cause overlapping symptoms with endometriosis. This is important because, if you only treat one condition and not the others, this can lead to continued symptoms and a great deal of discouragement. Another condition with overlapping symptoms with endometriosis is uterine fibroids (leiomyomas).

Fibroids are benign tumors of the smooth muscle cells of the uterus with symptoms that can range from being asymptomatic to having “abnormal uterine bleeding, specifically in terms of heavy and prolonged bleeding” as well as pain with penetration and non-cyclic pelvic pain (Zimmermann et al., 2012). They can also affect fertility and cause urinary dysfunction (Fortin, Flyckt, & Falcone, 2018).

There has not been much research on the correlation between endometriosis and fibroids. One study reports “an incidence of concomitant fibroids and endometriosis ranging between 12 and 20%, based on 2 previously published studies” (Nezhat et al., 2016). A small study that looked at patients with abnormal uterine bleeding found that “of the 208 patients with the presenting chief concern of symptomatic leiomyoma and who underwent surgical therapy, 181 had concomitant diagnoses of leiomyoma and endometriosis” (Nezhat et al., 2016). Another study looking at those with infertility found (by using ultrasound findings) the “diagnosis of fibroids was made in 3.1% of cases, adenomyosis was found in 21.2%, and the co-existence of both uterine disorders with endometriosis was reported in 14.6% of patients” (Capezzuoli et al., 2020). Nezhat et al. (2016) states that “because of the significant overlap of symptoms, it is often difficult to discern which pathology is responsible for the patient’s complaints” and recommends “a high level of suspicion for endometriosis before and during surgery in these women, with the goal of treating both pathologies in a single surgery.”

For more information see: https://icarebetter.com/fibroids/

References

Capezzuoli, T., Vannuccini, S., Fantappiè, G., Orlandi, G., Rizzello, F., Coccia, M. E., & Petraglia, F. (2020). Ultrasound findings in infertile women with endometriosis: evidence of concomitant uterine disorders. Gynecological Endocrinology, 36(9), 808-812. https://doi.org/10.1080/09513590.2020.1736027

Fortin, C., Flyckt, R., & Falcone, T. (2018). Alternatives to hysterectomy: the burden of fibroids and the quality of life. Best Practice & Research Clinical Obstetrics & Gynaecology, 46, 31-42. https://www.sciencedirect.com/science/article/abs/pii/S1521693417301487

Nezhat, C., Li, A., Abed, S., Balassiano, E., Soliemannjad, R., Nezhat, A., … & Nezhat, F. (2016). Strong association between endometriosis and symptomatic leiomyomas. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 20(3). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5019190/

Zimmermann, A., Bernuit, D., Gerlinger, C., Schaefers, M., & Geppert, K. (2012). Prevalence, symptoms and management of uterine fibroids: an international internet-based survey of 21,746 women. BMC women’s health, 12(1), 1-11. https://link.springer.com/article/10.1186/1472-6874-12-6

2 years ago Endometriosis , Endometriosis Education

Endometrial Polyps

The last couple of weeks, we have seen that adenomyosis and interstitial cystitis are found frequently in those with endometriosis and can cause similar symptoms. Another finding noted in those with endometriosis is endometrial (uterine) polyps. One meta-analysis found a significantly higher risk of endometrial polyps (EP) in those with endometriosis (Zheng et al., 2015). These polyps are overgrowths of endometrial glands and stroma (Zheng et al., 2015). While they may not cause any symptoms, they can cause abnormal menstrual bleeding, bleeding between menstrual periods, vaginal bleeding after menopause, and might affect fertility.

Zheng et al. (2015) notes that, like in endometriosis, the expression of estrogen receptors and aromatase (an enzyme that converts androgens to estrogens) is altered in endometrial polyps and can increase the local concentration of estrogen. The authors suggest that “it is important to determine whether patients with endometriosis also have EP and then remove any coexisting EP via hysteroscopy, especially for infertile patients” (Zheng et al., 2015).

For more information on endometrial polyps, see: https://icarebetter.com/endometrial_uterine-polyps/

Reference

Zheng, Q. M., Mao, H. L., Zhao, Y. J., Zhao, J., Wei, X., & Liu, P. S. (2015). Risk of endometrial polyps in women with endometriosis: a meta-analysis. Reproductive biology and endocrinology, 13(1), 1-9. https://link.springer.com/article/10.1186/s12958-015-0092-2

3 years ago Endometriosis , Endometriosis Education

Interstitial cystitis- “evil twin” of endometriosis

Last week, we noted that adenomyosis can frequently coexist in people with endometriosis. Another one of those conditions that can frequently coexist with endometriosis, aptly named the “evil twin” to endometriosis, is interstitial cystitis (IC) (also called painful bladder syndrome). The walls of the bladder become inflamed or irritated, resulting in symptoms similar to a bladder infection, such as urinary urgency and/or frequency, painful urination, and pelvic pain (Al-Shaiji et al., 2021). However, in IC, there is no infection, and the symptoms can often be exacerbated during the time around menses (Al-Shaiji et al., 2021).

Endometriosis and IC can both be found in 80% of people with chronic pelvic pain (Al-Shaiji et al., 2021). Like endometriosis, it can take several years for a diagnosis of IC to be made (Al-Shaiji et al., 2021). It is important to consider this condition when looking at treatments for chronic pelvic pain. Al-Shaiji et al. (2021) reports that “up to 25%–40% of patients who undergo hysterectomy as a treatment of CPP will continue to have pain postoperatively.”  Al-Shaiji et al. (2021) also cites another study that discovered that “IC was found in 79% of the patients” who had persistent pelvic pain after a hysterectomy (who were subsequently treated for IC and had improvements in their symptoms). Al-Shaiji et al. (2021) concluded that it is important to look beyond endometriosis as the only cause of a person’s pelvic pain, especially if previous treatments have been ineffective.

For more information on IC, see: https://icarebetter.com/interstitial-cystitis_bladder-pain-syndrome-by-susan-pierce-richards/

Reference

Al-Shaiji, T. F., Alshammaa, D. H., Al-Mansouri, M. M., & Al-Terki, A. E. (2021). Association of endometriosis with interstitial cystitis in chronic pelvic pain syndrome: Short narrative on prevalence, diagnostic limitations, and clinical implications. Qatar Medical Journal, 2021(3), 50. https://doi.org/10.5339/qmj.2021.50

3 years ago Endometriosis , Endometriosis Education

Adenomyosis- sister to endometriosis

Endometriosis is often found along with other conditions that can cause similar symptoms (see Related Conditions). One of those conditions is called adenomyosis, where endometrial glands and stroma invade the muscular part of the uterine wall (Gracia et al., 2022). Vannuccini and Petraglia  (2019) report that “adenomyosis and endometriosis share a number of features, so that for many years adenomyosis has been called endometriosis interna,” but the authors go on to point out that “nevertheless, they are considered two different entities.” Adenomyosis is found in those with endometriosis anywhere from 20-80% of the time (Vannuccini & Petraglia, 2019)!

Both conditions share similar symptoms, such as painful periods and abnormal uterine bleeding. This is important to keep in mind when looking at treatment options as it has been seen that “after surgical treatment…pelvic pain and abnormal uterine bleeding (AUB) were significantly more likely to persist with the presence of adenomyosis” (Gracia et al., 2022). Vannuccini and Petraglia  (2019)  also found this- noting that “on ultrasound pre-operative assessment, 47.8% of patients undergoing surgery for [deep infiltrating endometriosis] were affected by adenomyosis, and in those affected by both conditions, the surgical treatment was not as effective in treating pain as it was in those with only endometriosis.” The ability to diagnose adenomyosis with magnetic resonance imaging and/or transvaginal ultrasound (versus only after a hysterectomy) has made it easier to plan prior to surgery and adjust expectations.  

When looking at treating chronic pelvic pain, it is important to note that endometriosis often coexists with several other conditions that can cause similar symptoms. These other conditions, if left untreated, can continue to cause symptoms, which can lead to a great deal of discouragement if you are not aware.

For more information on adenomyosis, see: https://icarebetter.com/adenomyosis/

References

Vannuccini, S., & Petraglia, F. (2019). Recent advances in understanding and managing adenomyosis. F1000Research, 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6419978/

Loring, M., Chen, T. Y., & Isaacson, K. B. (2021). A Systematic review of adenomyosis: It is time to reassess what we thought we knew about the disease. Journal of minimally invasive gynecology, 28(3), 644-655. https://www.sciencedirect.com/science/article/pii/S1553465020311006

Gracia, M., de Guirior, C., Valdés-Bango, M., Rius, M., Ros, C., Matas, I., … & Carmona, F. (2022). Adenomyosis is an independent risk factor for complications in deep endometriosis laparoscopic surgery. Scientific Reports, 12(1), 1-8. https://www.nature.com/articles/s41598-022-11179-8

3 years ago Endometriosis , Endometriosis Education

Teens with endometriosis

Endometriosis in adolescents was recently reviewed by Liakopoulou et al. (2022), and they report that “adolescent endometriosis is a challenging diagnosis” and that “the disease can be easily overlooked”- thus the true incidence of endometriosis in teens is not really known. The diagnosis in teens is often delayed which “can lead to suffering for several years.” The authors state that “consequently, early diagnosis appears to be of upmost importance, especially as far as adolescents and young patients are concerned, as it can optimize life quality, relief symptomatology, and decrease the negative impact of the disease on future fertility.”

To achieve earlier diagnosis, the authors suggest that “further evaluation should be considered when prolonged use of nonsteroidal anti-inflammatory drugs (NSAIDs) is reported by the patient, there are relatives diagnosed with endometriosis (in cases of frequent absenteeism from everyday activities during menstruation), and estroprogestin contraceptives have been prescribed before the age of 18 years for primary dysmenorrhea treatment.” They report that “ACOG recommends laparoscopy for diagnosing endometriosis in adolescents” and that “diagnostic laparoscopy is indicated if there is no relief after 3–6 months of medical management.” The authors do report that ultrasounds and MRI’s may be utilized, but that normal imaging doesn’t rule out endometriosis. The authors state that “the benefits of laparoscopy do not only include the confirmation of diagnosis, but also the opportunity of intraoperative treatment.” But the ability to identify endometriosis is important as “during laparoscopy, endometriosis may have a variable appearance.” In adolescents, they report that “white, yellow-brown, red-pink lesions, as well as clear shiny vesicular lesions, are more frequent” and are “associated with greater levels of pain.” The authors also advise that “if suspicious lesions are not identified during laparoscopy, random biopsies of the cul-de-sac should be obtained.” The authors also remind us that “most adolescents present with stage I–II disease; however, advanced stage III–IV disease, including ovarian endometriomas, is increasingly diagnosed in adolescents” and that “the stage and location of the lesions do not directly corelate with the severity or frequency of symptoms.”

The authors note that to help with symptom relief “continuous hormonal therapy can be used to suppress menstruation and is considered safe.” But they report that the use of “gonadotropin releasing hormone (GnRH) agonist or antagonist is not recommended in adolescents with chronic pelvic pain and suspected endometriosis, due to potential impact on bone density.” If GnRH agonists are used, they state that the use “cannot exceed short periods of time, as long-term use may lead to bone density loss and potentially affect negatively cardiovascular risk.” They also caution that “GnRH agonists, when administered before surgery, change the macroscopic image of endometriotic lesions, make their visualization harder, and, thus, preclude effective surgical treatment.” They also state that “depot medroxyprogesterone acetate (DMPA) use is limited, due its association with lower bone mineral density” as well.

Reference

Liakopoulou, M. K., Tsarna, E., Eleftheriades, A., Arapaki, A., Toutoudaki, K., & Christopoulos, P. (2022). Medical and Behavioral Aspects of Adolescent Endometriosis: A Review of the Literature. Children, 9(3), 384. https://www.mdpi.com/2227-9067/9/3/384/htm

3 years ago Endometriosis , Endometriosis Education

Endometriosis and early menopause

Is there an association between endometriosis and early menopause? Kulkarni et al. (2022) looked this question and found that there just might be. The authors state that early natural menopause (ENM) is the cessation of ovarian function before age 45 years. They report that endometriomas in particular (and some treatments for them) might affect ovarian reserves which could lead to earlier onset of menopause. The authors also note that the increase in inflammatory markers in the peritoneal fluid of those with endometriosis might affect follicular and ovarian function (thus leading to earlier menopause).

The authors report that “in this large, prospective cohort study, we observed that surgically confirmed endometriosis was associated with a significantly greater risk of ENM.” They noted the highest risk for ENM was among those who never used oral contraceptives (OC) or had never given birth (more ovulations throughout the lifetime that used up the number of oocytes at that were present at birth). The authors further comment that “although a meta-analysis found an association between OC use and later age at natural menopause, a recent discovery in the Nurses’ Health Study II population did not support a clear association between duration of OC use (decreasing lifetime number of ovulatory cycles) and risk for ENM.” In the study performed by Kulkarni et al (2022), they did find that “among participants who never used OCs, endometriosis was associated with a 2-fold greater risk for ENM.” The authors comment that “it is likely that OC use masks menopause, which is important to consider in this analysis particularly because women may use OCs to control endometriosis-associated symptoms.”

In the end, the researchers concluded that “endometriosis may be an important risk factor for ENM, and women with endometriosis, particularly those who are nulliparous and never-users of OCs, may be at a higher risk for a shortened reproductive duration.” Early menopause is important because it has an affect on osteoporosis, cardiovascular health, and other aspects of health.

Reference

Kulkarni, M. T., Shafrir, A., Farland, L. V., Terry, K. L., Whitcomb, B. W., Eliassen, A. H., … & Missmer, S. A. (2022). Association Between Laparoscopically Confirmed Endometriosis and Risk of Early Natural Menopause. JAMA Network Open, 5(1), e2144391-e2144391. https://jamanetwork.com/journals/jamanetworkopen/article-abstract/2788287

3 years ago Endometriosis , Endometriosis Education

More updates on diet with endometriosis

A recent systemic review looked at the effect of dietary changes on pain perception in endometriosis. While the researchers went through 2185 studies, only six studies fulfilled their inclusion criteria (reproductive age; laparoscopically confirmed endometriosis; and intervention including any type of dietary change) (Sverrisdóttir, Hansen, & Rudnicki, 2022). Those six studies showed that dietary changes, such as “high intake of polyunsaturated fatty acids, a gluten-free diet and a low nickel diet,” may improve painful endometriosis (Sverrisdóttir, Hansen, & Rudnicki, 2022).

Another study created a short algorithm for dietary suggestions for those with endometriosis. They recommended overall the Mediterranean diet or an antioxidant diet- rich in vitamins, minerals, and polyunsaturated fats (Nirgianakis et al., 2021). For those who have gastrointestinal symptoms, they further recommend a gluten free, low FODMAP, or for a short time low nickel diet (Nirgianakis et al., 2021).

As far as dietary supplements go, a review by Bahat et al. (2022) reports that “magnesium, curcumin, resveratrol, and ECGC were beneficial in animal studies due to their antiangiogenic effects. ” Bahat et al. (2022) also states that “omega 3 and alpha-lipoic acid improved endometriosis-associated pain in human studies” as well as “curcumin, omega 3, NAC, vitamin C, and ECGC supplementation decreased endometriotic lesion size in animal and human studies.” The authors do caution that “low sample size and experimental study design” limits the quality of the evidence and urge that “one should keep in mind that food resources and pharmacological formulas of supplements may have different mechanisms of actions” (Bahat et al., 2022).

For more info on diet and endometriosis, see: https://icarebetter.com/diet-and-nutrition/

References

Bahat, P. Y., Ayhan, I., Ozdemir, E. U., Inceboz, Ü., & Oral, E. (2022). Dietary supplements for treatment of endometriosis: A review. Acta Bio Medica: Atenei Parmensis, 93(1). doi: 10.23750/abm.v93i1.11237

Nirgianakis, K., Egger, K., Kalaitzopoulos, D. R., Lanz, S., Bally, L., & Mueller, M. D. (2021). Effectiveness of dietary interventions in the treatment of endometriosis: a systematic review. Reproductive sciences, 1-17. https://link.springer.com/article/10.1007/s43032-020-00418-w

Sverrisdóttir, U. Á., Hansen, S., & Rudnicki, M. (2022). Impact of diet on pain perception in women with endometriosis: a systematic review. European Journal of Obstetrics & Gynecology and Reproductive Biology. https://www.sciencedirect.com/science/article/abs/pii/S0301211522000781

3 years ago Endometriosis , Endometriosis Education

Endometriosis and rheumatoid arthritis

A couple of recent studies have indicated that those with endometriosis might have a higher risk of rheumatoid arthritis (RA) (Xue et al., 2021; Chen et al., 2021). One study even suggested “in the clinical management of patients with RA, rheumatologists should be especially mindful of the possibility of underlying endometriosis” (Xue et al., 2021). This is echoed by Shigesi et al. (2019) who states that “the observed associations between endometriosis and autoimmune diseases suggest that clinicians need to be aware of the potential coexistence of endometriosis and autoimmune diseases when either is diagnosed.”

Harris et al. (2016) cautions that “it remains to be understood whether and how endometriosis itself, or hysterectomy or other factors associated with endometriosis, is related to risk of…RA.” Alpízar-Rodríguez  et al. (2017) found that “laparoscopically confirmed endometriosis was found to be significantly associated with subsequent RA…However, this association was attenuated after adjustment by hysterectomy and oophorectomy, suggesting a possible confounding effect by surgically induced menopause.” This effect of menopause on RA has been noted before- “the peak incidence in females coincides with menopause when the ovarian production of sex hormones drops markedly” (Islander et al., 2011). The effect of female hormones has been noted to influence RA symptoms as well. For instance, one study noted “decreased joint pain during times when estrogen and progesterone levels are high” (Costenbader et al., 2008). Estrogen can have “both stimulatory and inhibitory effects on the immune system” and it has been noted that “the rapid decline in ovarian function and in circulating oestrogens at menopause is associated with spontaneous increases in pro-inflammatory cytokines” (Alpízar-Rodríguez et al., 2017). Part of the effect may be seen in the estrogen receptors, with an increase of ER-β over ER-α receptors in RA synovial tissue (Alpízar-Rodríguez et al., 2017). This increased expression of ER-β receptors is also seen in endometriosis lesions (which can cause increased inflammation) (Bulun et al., 2012).  

References

Alpízar-Rodríguez, D., Pluchino, N., Canny, G., Gabay, C., & Finckh, A. (2017). The role of female hormonal factors in the development of rheumatoid arthritis. Rheumatology, 56(8), 1254-1263. https://doi.org/10.1093/rheumatology/kew318

Bulun, S. E., Monsavais, D., Pavone, M. E., Dyson, M., Xue, Q., Attar, E., … & Su, E. J. (2012, January). Role of estrogen receptor-β in endometriosis. In Seminars in reproductive medicine (Vol. 30, No. 01, pp. 39-45). Thieme Medical Publishers. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034571/…

Chen, S. F., Yang, Y. C., Hsu, C. Y., & Shen, Y. C. (2021). Risk of Rheumatoid Arthritis in Patients with Endometriosis: A Nationwide Population-Based Cohort Study. Journal of Women’s Health, 30(8), 1160-1164. https://doi.org/10.1089/jwh.2020.8431

Costenbader, K. H., & Manson, J. E. (2008). Do female hormones affect the onset or severity of rheumatoid arthritis?. Arthritis Care & Research, 59(3), 299-301. https://onlinelibrary.wiley.com/doi/epdf/10.1002/art.23324

Harris, H. R., Costenbader, K. H., Mu, F., Kvaskoff, M., Malspeis, S., Karlson, E. W., & Missmer, S. A. (2016). Endometriosis and the risks of systemic lupus erythematosus and rheumatoid arthritis in the Nurses’ Health Study II. Annals of the rheumatic diseases, 75(7), 1279-1284. http://dx.doi.org/10.1136/annrheumdis-2015-207704

Islander, U., Jochems, C., Lagerquist, M. K., Forsblad-d’Elia, H., & Carlsten, H. (2011). Estrogens in rheumatoid arthritis; the immune system and bone. Molecular and cellular endocrinology, 335(1), 14-29. DOI: 10.1016/j.mce.2010.05.018

Xue, Y. H., You, L. T., Ting, H. F., Chen, Y. W., Sheng, Z. Y., Xie, Y. D., … & Wei, J. C. C. (2021). Increased risk of rheumatoid arthritis among patients with endometriosis: a nationwide population-based cohort study. Rheumatology, 60(7), 3326-3333. https://doi.org/10.1093/rheumatology/keaa784

Shigesi, N., Kvaskoff, M., Kirtley, S., Feng, Q., Fang, H., Knight, J. C., … & Becker, C. M. (2019). The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis. Human reproduction update, 25(4), 486-503. https://doi.org/10.1093/humupd/dmz014

3 years ago Endometriosis , Endometriosis Education

Endometriosis and Constipation

Endometriosis is associated with several “digestive complaints, including abdominal pain, bloating, diarrhea, constipation, rectal bleeding, and dyschezia” (Raimondo et al., 2022). Raimondo et al. (2022) reports that “chronic constipation (CC) in women with endometriosis varies from 12% to 85%” and results from multiple causes such as inflammation, scar tissue, and damage to pelvic autonomic nerves.

Raimondo et al. (2022) reports that those “with endometriosis are more likely to have pelvic floor muscle dysfunctions” and found by using ultrasounds that hypertonic (too much muscle tone) pelvic floor muscles were found more in those with chronic constipation than those without it. While treating chronic constipation can be challenging, the study states that “specific interventions targeting the pelvic floor hypertonia, such as physiotherapy” might be beneficial.

Another study reports that digestive symptoms such as constipation are due more to the inflammation irritating the digestive tract than to lesions infiltrating the bowel itself (Roman et al., 2012). However, those “presenting with rectal endometriosis were more likely to present cyclic defecation pain (67.9%), cyclic constipation (54.7%) and a significantly longer stool evacuation time, although these complaints were also frequent in the other two groups (38.1 and 33.3% in women with Stage 1 endometriosis and 42.9 and 26.2% in women with deep endometriosis without digestive involvement, respectively)” (Roman et al., 2012). A referral to a gastroenterologist may help improve symptoms, but part of the treatment might include surgery to remove lesions that may be affecting the bowel (Meurs‐Szojda et al., 2011).

For more information on bowel symptoms: https://icarebetter.com/bowel-gi-endometriosis/

References

Meurs‐Szojda, M. M., Mijatovic, V., Felt‐Bersma, R. J. F., & Hompes, P. G. A. (2011). Irritable bowel syndrome and chronic constipation in patients with endometriosis. Colorectal Disease, 13(1), 67-71. https://doi.org/10.1111/j.1463-1318.2009.02055.x

Raimondo, D., Cocchi, L., Raffone, A., Del Forno, S., Iodice, R., Maletta, M., … & Seracchioli, R. (2022). Pelvic floor dysfunction at transperineal ultrasound and chronic constipation in women with endometriosis. International Journal of Gynecology & Obstetrics. https://doi.org/10.1002/ijgo.14088

Roman, H., Ness, J., Suciu, N., Bridoux, V., Gourcerol, G., Leroi, A. M., … & Savoye, G. (2012). Are digestive symptoms in women presenting with pelvic endometriosis specific to lesion localizations? A preliminary prospective study. Human reproduction, 27(12), 3440-3449.  doi: 10.1093/humrep/des322

3 years ago Endometriosis , Endometriosis Education

Endometriosis and Heart Disease

There is not much literature about endometriosis and heart disease. Marchandot et al. (2022) reports that there are some overlaps in contributors to both heart disease and endometriosis, such as “chronic inflammation, enhanced oxidative stress, endothelial dysfunction, and cellular proliferation.” Some research indicates “increased arterial stiffness and impaired flow-mediated dilation, a surrogate marker of endothelial dysfunction potentially reversible after surgical treatment, were associated with endometriosis” (Marchandot et al., 2022).

Some risk factors for heart disease have been found in those with endometriosis, including hypertension, dyslipidemia, and obesity. Research suggests that the link between hypertension and endometriosis may be because of certain treatments for endometriosis, namely from early hysterectomy/oophorectomy and from use of NSAIDs (Marchandot et al., 2022). In fact, “hysterectomy in women aged 50 years or younger has been associated with a significantly increased risk of ischaemic heart disease, with oophorectomy linked to an increased risk of both [coronary artery disease] and stroke” (Marchandot et al., 2022). Shuster et al. (2010) add that “regardless of the cause…women who experience premature menopause (before age 40 years) or early menopause (between ages 40 and 45 years) experience an increased risk of overall mortality, cardiovascular diseases, neurological diseases, psychiatric diseases, osteoporosis, and other sequelae.” High cholesterol has also been associated with endometriosis- a 25% increased risk in those with endometriosis (Marchandot et al., 2022). Marchandot et al. (2022) also reports that “the role of hormonal treatment strategies for endometriosis, including combined oral contraceptives, progestins, and gonadotrophin-releasing hormone (GnRH) analogues, has been highly questioned regarding a potentially enhanced lipid profile, cardiovascular risk profile, and weight gain.”

Marchandot et al. (2022) urge caution in interpreting results as “only small associations between endometriosis and CVD have been reported in the literature” and that current studies have been limited “by small sample sizes, observational designs, and the specific characteristics of the population from which the samples are derived (high-income countries, cohort study of hospital-based healthcare workers, primarily Caucasian Europeans, etc.).” They also state that endometriosis treatments influence cardiovascular risk factors (“the confounding influence of hormonal, non-hormonal, and pain-related interventions further complicate the cause-and-effect relationship in CV endpoints”) (Marchandot et al. 2022).

References

Marchandot, B., Curtiaud, A., Matsushita, K., Trimaille, A., Host, A., Faller, E., … & Morel, O. (2022). Endometriosis and cardiovascular disease. European Heart Journal Open, 2(1), oeac001. https://doi.org/10.1093/ehjopen/oeac001

Shuster, L. T., Rhodes, D. J., Gostout, B. S., Grossardt, B. R., & Rocca, W. A. (2010). Premature menopause or early menopause: long-term health consequences. Maturitas, 65(2), 161-166. doi: 10.1016/j.maturitas.2009.08.003

3 years ago Endometriosis , Endometriosis Education

Fatigue, rest, and pacing

During endometriosis awareness month, the most interacted with post on our Facebook page was about fatigue- which points to how significant it impacts those with endometriosis. Fatigue and pain often go hand in hand- with one aggravating the other. One concept to help prevent flares of pain and fatigue is pacing.

Pacing is about adjusting your activities to your body’s current needs and finding the balance between activity and rest. Pacing doesn’t mean you accomplish less, rather it helps you accomplish your goals while reducing the chance of a pain/fatigue flare. We are familiar with the concept of pacing in running and other forms of exercise:

“Pacing is essentially a strategy that you use to distribute your energy throughout your entire bout of physical activity. Being cognitively aware of how much you are physically exerting yourself will keep you in touch with signs of fatigue and allow better control of performance. Properly controlling your pace during your physical activity can help you prevent working so hard that you’re unable to complete your training in the next session. Pacing allows you to avoid injury…”

(MacPherson, n.d.)

Pacing, according to one study’s participants, can include “breaking down tasks, saying ‘no’, being kind to themselves, using rest breaks, doing something each day, developing a structure and gradually building up activities” (Antcliff et al., 2021). The same study found that some of the main barriers to pacing activities were “wanting to complete tasks, or not wanting to delegate or be perceived as lazy” (Antcliff et al., 2021). Sometimes life’s demands make it difficult- especially with an illness not many people understand. The study had participants include goals such as “socialise with friends, try varying exercises, protect time for hobbies and relaxation, and gradually try activities they had been avoiding due to symptoms” (Antcliff et al., 2021). Sometimes when we feel better, we push ourselves too hard for too long to make up for when we can’t perform our usual activities. Feinberg and Feinberg (n.d.) report that with pacing “you break an activity up into active and rest periods” and that “rest periods are taken before significant increases in pain levels occur.” Pacing may mean that if you have work or an appointment scheduled, then you may need to keep your schedule clear the day before and/or after to be able to recover. It may mean only doing one load of laundry that day. It may mean protecting time for activities that feed your spirit (reading, outdoor time, time with supportive friends or family, etc.).

In the spirit of pacing and taking rest when needed, the admins of our Facebook page will be taking a week off April 2-9, 2022. During this week, our Facebook page will be on pause. This means that it will be read only during that week, so it won’t let you comment, react, post, or request to join. Don’t worry, it’ll go back to usual after that week. After 9 years of continuous volunteer work by the admins and moderators, it’s about time for a break.

See more about fatigue with endometriosis: https://icarebetter.com/fatigue-in-endometriosis/?doing_wp_cron=1594748400.8231060504913330078125

endometriosis signs and symptoms

References

Antcliff, D., Keenan, A. M., Keeley, P., Woby, S., & McGowan, L. (2021). “Pacing does help you get your life back”: The acceptability of a newly developed activity pacing framework for chronic pain/fatigue. Musculoskeletal care. https://onlinelibrary.wiley.com/doi/full/10.1002/msc.1557

Feinberg & Feinberg. (n.d.). Pacing means moving ahead. Retrieved from http://www.cfsselfhelp.org/library/pacing-means-moving-ahead-and-not-falling-behind#:~:text=Pacing%20is%20a%20tool%20that,physical%20activity%20because%20it%20hurts.

MacPherson. (n.d.). How to properly pace yourself during exercise (and why it matters) Retrieved from https://www.vitacost.com/blog/how-to-pace-yourself-to-improve-exercise/

3 years ago Endometriosis , Endometriosis Education

Endometriosis Awareness Week 4

Endometriosis awareness month is still going! As it is our last newsletter for March, we have a bunch of more shareable information, including some myth-busters. Remember, a good link to share is our basic all About Endometriosis that has short and to the point information about endometriosis as well as links for more info. Keep that endo conversation going!

Food is important in our lives! There is no one specific diet for endometriosis. No food, diet, or supplement will “cure” endometriosis, but it can help manage symptoms and is great for overall health and well-being. Your diet needs to be individualized to your specific needs, and it can take quite a bit of experimentation to find what works for you. For more info on diet, see: https://icarebetter.com/diet-and-nutrition/

With the goal to improve symptom management and to feel better overall, some alternative and complementary therapies can be helpful. For more info, see: https://icarebetter.com/alternative-and-complementary-therapies/

“Hysterectomy is a definitive cure for endometriosis.” Myth-buster: Endometriosis can still persist after a hysterectomy. (A hysterectomy can hep related conditions that involve the uterus however.) https://icarebetter.com/myths-and-misinformation/

“Endo will go away with menopause.” Myth-buster: Endometriosis can still persist after menopause. https://icarebetter.com/myths-and-misinformation/

“Getting pregnant will help.” Myth-buster: Pregnancy is not a cure or treatment for endometriosis. The fact that endometriosis is one of the leading causes of infertility makes this all the more painful. https://icarebetter.com/myths-and-misinformation/

“You’re too young to have endometriosis. ” Myth-buster: Endometriosis can be found in teens and can be found in “advanced” stages. https://icarebetter.com/myths-and-misinformation/

“There wasn’t much endo there so it must not be causing your symptoms.” Or “you only have minimal endometriosis so it’s not affecting your fertility.” Myth-buster: Minimal endometriosis can cause severe symptoms and can affect fertility. https://icarebetter.com/pain-associated-with-minimal-endometriosis/ and https://icarebetter.com/myths-and-misinformation/

“Your symptoms can’t be that bad- it’s just in your head.” Myth-buster: Endometriosis can cause significant symptoms based on very real pathophysiology. https://icarebetter.com/myths-and-misinformation/

Early diagnosis and effective treatment can lead to improved quality of life and lessen the detrimental effects from long term pain and suffering. Increasing awareness of symptoms and best practice treatment is important!

Endometriosis awareness does not end in March for those of us who have suffered from it. If we can each reach out to teach another, then maybe that other person won’t have to go through what we did to not only find a diagnosis but find effective treatment. Please feel free to share the resources provided on our website. (You can further support our work here.)

3 years ago Endometriosis , Endometriosis Education

Endometriosis Awareness Week 3

Endometriosis awareness month is still going! Here is a week’s worth of shareable information. Another good link to share is our basic all About Endometriosis that has short and to the point information about endometriosis as well as links for more info. Keep that endo conversation going!

Infertility is strongly associated with endometriosis. https://icarebetter.com/fertility-issues/ and https://icarebetter.com/infertility-links-2/

Endometriosis is often found with other conditions that can have similar symptoms. For more info, see: https://icarebetter.com/related-conditions/

Excision is the surgical removal of tissue by cutting out. It differs from ablation/laserization/burning/vaporizing, which are techniques that use a heat source to destroy tissue. Excision allows for a biopsies to be sent to a pathologist for confirmation, and it better ensures that all of the endometriosis lesion is removed. With ablation, it may or may not reach deep enough to destroy all the endometriosis lesion and it does not allow for pathology confirmation. While ablation may work for superficial endometriosis, it leaves the unknown of whether all of the lesion was truly destroyed. For more info, see: https://icarebetter.com/why-excision-is-recommended/ and https://icarebetter.com/why-see-a-specialist/

Hormonal treatments, while they can relieve symptoms, do not get rid of the disease itself. Symptoms often return rapidly once medications are stopped. Hormonal medication may not stop the progression of disease- this is particularly important where the ureters and/or bowel are involved. Endometriosis lesions are different from normal endometrium (the lining of the uterus), therefore some people’s endometriosis does not respond to progestin therapy. For more info, see: https://icarebetter.com/hormonal-medications/

Different medications can be used to help alleviate chronic pelvic pain and other related conditions. Alleviate does not necessarily mean eliminate. As long as endometriosis lesions are present, irritation to muscles and nerves that can cause pain will continue. Addressing the underlying problem is important for long term goals. It is also important to address other pain generators, such as pelvic floor dysfunction or interstitial cystitis/bladder pain syndrome. For more info, see: https://icarebetter.com/pain-medications/ ; https://icarebetter.com/a-quick-guide-to-pain-control/ ; https://icarebetter.com/pain-management/

Endometriosis can cause problems with the surrounding muscles and soft tissues. Pelvic floor spasms, tight muscles, other myofascial changes, and more will often contribute to symptoms (such as pain with defecation or pain with sex). These muscular and soft tissue changes can benefit from pelvic physical therapy. However, appropriate therapy for endometriosis associated problems requires a specific skill set by your physical therapist. For more info, see:  https://icarebetter.com/pelvic-physical-therapy/ and https://icarebetter.com/physical-therapy-resources/

Symptoms from endometriosis, such as pain and fatigue, can impact an individual’s quality of life significantly. This can affect our mental health. Proper treatment for the underlying cause of symptoms can help, but years of symptoms, such as pain or infertility, can create a toll. Seeking care for your mental health is not a sign that your endo is “all in your head”- rather it is another tool to help your overall well-being. For more info, see: https://icarebetter.com/the-importance-of-mental-health-support-in-endometriosis-2/ ; https://icarebetter.com/mental-health-overview/ ; https://icarebetter.com/choosing-the-right-mental-health-therapist-2/

3 years ago Endometriosis , Endometriosis Education

Endometriosis Awareness Week 2

Endometriosis awareness month has arrived! Here is a week’s worth of shareable information. Another good link to share is our basic all About Endometriosis that has short and to the point information about endometriosis as well as links for more info. Keep that endo conversation going!

For more information, see:

Ultrasounds: https://icarebetter.com/ultrasound-use-with-endometriosis/

MRI’s: https://icarebetter.com/magnetic-resonance-imaging-mris-and-endometriosis/

Negative scans do NOT rule out endometriosis: https://icarebetter.com/but-your-tests-are-all-negative/

While researchers are working to create a reliable test and there are promising ones in development, at this point there are none widely available. Also, response or no response to hormonal medications has NOT been proven to be reliable to diagnose endometriosis. For more info, see: https://icarebetter.com/labwork-and-blood-tests/ and https://icarebetter.com/but-your-tests-are-all-negative/

When performing surgery, it is important for the surgeon to be familiar with both all the appearances and indications of endometriosis as well as all the locations it might be found. For more info, see: https://icarebetter.com/the-many-appearances-of-endo/

Endometriosis can be found in many places both in the pelvis and outside of the pelvis. For more info, see: https://icarebetter.com/locations-of-endometriosis/ and https://icarebetter.com/weird-places-endometriosis-has-been-found/

Endometriosis can cause significant pain even if surgery finds “minimal” lesions. The pain can be from inflammation, nerve irritation, and changes in the myofascia. For more info, see: https://icarebetter.com/pain-its-complicated/ ; https://icarebetter.com/what-influences-pain-levels/ ; https://icarebetter.com/pain-associated-with-minimal-endometriosis/

Fatigue can significantly impact those with endometriosis. This fatigue can come from inflammation, which can lead to pain which can lead to sleep problems, stress, and depression….which can lead to more fatigue.  See more at: https://icarebetter.com/fast-facts-fatigue-with-endometriosis/

Endometriosis patients are often diagnosed with irritable bowel syndrome (IBS). While there can be an overlap in the two conditions, endometriosis can cause symptoms similar to IBS. For more info, see: https://icarebetter.com/bowel-gi-endometriosis/

3 years ago Endometriosis , Endometriosis Education

Endometriosis Awareness Week 1

Endometriosis awareness month has arrived! Here is a week’s worth of shareable information. Another good link to share is our basic all About Endometriosis that has short and to the point information about endometriosis as well as links for more info. Keep that endo conversation going!

Endometriosis is found outside of the uterus. It can be on many locations both in the pelvis and outside the pelvis. Find more info on endometriosis locations here: https://icarebetter.com/locations-of-endometriosis/ and https://icarebetter.com/weird-places-endometriosis-has-been-found/

There are key differences in how endometriosis lesions differ from the lining of the uterus- which affects how it responds to its environment and to medications:. Find more info here: https://icarebetter.com/role-of-estrogen-receptor-%ce%b2-in-endometriosis/ and https://icarebetter.com/progesterone-resistance-in-endometriosis/

An estimated 11% of women are affected by endometriosis, although it is not restricted to only women. https://icarebetter.com/endometriosis-overview/

Despite the high incidence, diagnosis often delayed by 10 years due to symptoms being misdiagnosed or dismissed as normal menstrual cramps, by the lack of satisfactory biomarkers to diagnose, and by the definitive diagnostic standard being surgical visualization with histological confirmation. https://icarebetter.com/endometriosis-overview/

The symptoms of endometriosis can impact a person’s life in many ways. It can be costly in both medical costs and loss of ability to work. It can also affect relationships and a person’s sense of self. For more info, see: https://icarebetter.com/endometriosis-impact-on-work/ ; https://icarebetter.com/the-costly-burden-of-endometriosis/ ; https://icarebetter.com/the-personal-burden-of-endometriosis/

Pain can not only affect the ability to work and to attend school, it can affect a person’s ability to exercise, sleep, and be able to perform daily activities. https://icarebetter.com/insomnia-and-poor-sleep-with-endometriosis/

There are several theories as to the cause of endometriosis, but none have been proven. It has been seen in fetuses and has a genetic component. For more info, see: https://icarebetter.com/origin-theories-of-endometriosis/

Definitive diagnosis of endometriosis is through surgery with biopsies. Symptoms can indicate it, but there are many conditions with similar symptoms that overlap endometriosis. Response to hormonal medications is not reliable as a diagnosis. Ultrasounds and MRI’s can find endometriosis in some cases, but negative scans can not rule endometriosis out. For more info, see: https://icarebetter.com/diagnosis/

3 years ago Endometriosis Education

Endo Awareness- Start the Conversation

March is endometriosis awareness month, and it is time to start the conversation about endo. Endometriosis can take an average of 10 years before a diagnosis and even longer to find effective treatment. That’s why it is important to start that conversation about endometriosis- with family, with friends, with your healthcare providers.

Every day in March we will be sharing a short infograph about endometriosis along with links to more information that you can share. If we all reach out to another, perhaps we can help someone else not have to experience the often long delays in diagnosis and adequate treatment for endometriosis. Time to start the conversation!!!

You can start with some of these:  

• Nancy’s Nook website: https://icarebetter.com/  
• Endometriosis graphics to share: https://icarebetter.com/endometriosis-graphics/ 
• Articles and Website Links: https://icarebetter.com/articles-and-website-links/  
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3 years ago Endometriosis , Endometriosis Education

Surgery- expertise matters 

The gold standard for diagnosis of endometriosis is through laparoscopic surgery. The knowledge and skill of the surgeon can affect the ability to accurately identify endometriosis- in order to not only diagnose it but to also successfully remove all disease (Jose, Fausto, & Antonio, 2018; Fischer et al., 2013). In addition to the appearance of endometriosis, the numerous locations, including lesions not confined to the pelvis, can make surgery more complicated (endometriosis can involve areas such as ureters, bowel, or diaphragm that require a higher level of care). 

Leibetseder et al. (2022) reports that “in over 60% of diagnosed cases, endometriosis treatment requires multiple surgeries due to unidentified (missed) lesions.” Fattah et al. (2017) also echoes this, pointing out that “the numerical importance of atypical, subtle, non-hemorrhagic disease has recently been shown: at least two-thirds of patients have a visual appearance of disease that many clinicians have not been trained to recognize…” Fischer et al. (2013) states that “although excisional biopsy and resection offers a higher success rate in treating the disease, surgical excision also requires a higher level of surgical skill. As a result, many patients receive incomplete treatment, which in turn may lead to persistent symptoms and recurrent disease.” Rolla (2019) remarks that “the treatment of endometriosis requires a delicate and experienced surgeon and, if it is the case, an interdisciplinary team, including gastrointestinal surgeons or urologists (or both), in selected patients.” 

Achieving expertise in endometriosis surgery requires a lot of time and dedication. Some surgeons devote a large portion or all their practice to the surgical treatment of endometriosis- meaning more practice and skill in identifying and removing endometriosis. Some also have a multidisciplinary team that they work with in order to treat endometriosis in more complicated areas (such as ureters, bowel, thoracic). While endometriosis is reported by the World Health Organization (2021) to affect 190 million worldwide, the availability of endometriosis specialty care is not in keeping with the number of those who suffer with endometriosis. As-Sanie et al. (2019) states that “despite its high prevalence and cost, endometriosis remains underfunded and under researched” and indicates that this is “due in part to the societal normalization of women’s pain and stigma around menstrual issues, there is also a lack of disease awareness among patients, health care providers, and the public.” Endometriosis awareness month is next month- time to help raise awareness about this often debilitating disease that affects so many.

References 

As-Sanie, S., Black, R., Giudice, L. C., Valbrun, T. G., Gupta, J., Jones, B., … & Nebel, R. A. (2019). Assessing research gaps and unmet needs in endometriosis. American journal of obstetrics and gynecology, 221(2), 86-94. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0002937819303850  

Fattah, H. A., Helal, S. M. F., Hosny, T. A., & Basuni, S. M. A. (2017). Reliability of Visual Diagnosis of Peritoneal Endometriosis. Red, 23, 27-06. Retreived fromhttps://www.researchgate.net/profile/Tamer-Hosny/publication/324706887_Reliability_of_Visual_Diagnosis_of_Peritoneal_Endometriosis/links/5c60543c45851582c3dd583f/Reliability-of-Visual-Diagnosis-of-Peritoneal-Endometriosis.pdf 

Fischer, J., Giudice, L. C., Milad, M., Mosbrucker, C., & Sinervo, K. R. (2013). Diagnosis & management of endometriosis: pathophysiology to practice. APGO Educational Series on Women’s Health Issues. Retrieved from https://www.ed.ac.uk/files/atoms/files/diagnosis_and_management_of_endometriosis_booklet.pdf 

Jose, C., Fausto, A., & Antonio, L. (2018). Laparoscopic Enhanced Imaging Modalities for the Identification of Endometriosis Implants a Review of the Current Status. MOJ Womens Health, 7(1), 00160. DOI: 10.15406/mojwh.2018.07.00160 

Leibetseder, A., Schoeffmann, K., Keckstein, J., & Keckstein, S. (2022). Endometriosis detection and localization in laparoscopic gynecology. Multimedia Tools and Applications, 1-25. Retrieved from https://link.springer.com/article/10.1007/s11042-021-11730-1 

Rolla, E. (2019). Endometriosis: advances and controversies in classification, pathogenesis, diagnosis, and treatment. F1000Research, 8. Retrieved fromhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC6480968/ 

World Health Organization. (2021). Endometriosis. Retrieved from https://www.who.int/news-room/fact-sheets/detail/endometriosis#:~:text=Endometriosis%20affects%20roughly%2010%25%20(190,and%20girls%20globally%20(2).

3 years ago Endometriosis , Endometriosis Education

Using symptoms to lead to earlier diagnosis

Last week we talked about pain and how early intervention is important. In order to achieve this early intervention, early diagnosis is critical. The gold standard for diagnosis involves surgery, which can be delayed while trials of medications and other studies are performed. At times, with expert training, ultrasounds and MRI’s can rule in endometriosis (but do not necessarily rule it out). And while there is promising research into biomarkers for endometriosis, none have demonstrated the reliability for widespread use (https://icarebetter.com/labwork-and-blood-tests/ ). Another approach to increase the suspicion of endometriosis and hopefully lead to quicker diagnosis is symptoms.  

There has been much research on the symptoms involved with endometriosis, such as chronic pelvic pain. Some researchers are trying to develop “machine learning algorithms (MLA) to predict the likelihood of endometriosis” (Bendifallah et al., 2022). One study in France looked at developing such technology to help indicate to both clinicians and patients a higher probability of endometriosis. One caveat of the study was that they did not use the gold standard of diagnosis for endometriosis (surgical confirmation)- they identified patients “with diagnosis of endometriosis based on previous treatment for endometriosis or clinical examination confirming deep endometriosis, or sonography/MRI detecting ovarian, peritoneal or deep endometriosis.” 

They developed a screening tool that utilized “16 clinical and symptom-based features” to make an algorithm to help aid in the “early prediction of endometriosis.”  They used metrics such as age, BMI, dysmenorrhea, defecation pain, urinary pain during menstruation, sexual intercourse pain, absenteeism during last 6 months, right shoulder pain near or during menstruation, abdominal pain outside menstruation, low back pain outside menstruation, leg pain suggesting sciatica, mother/daughter history of endometriosis, number of nonhormonal pain treatments used, history of surgery for endometriosis, blood in urine during menstruation, and blood in stool during menstruation. 

The researchers hope that utilization of the tool would help “reduce ‘diagnostic wandering’, and hence diagnostic delay, and result in earlier treatment” (Bendifallah et al., 2022). The researchers developed the tool with patients in mind. They report “since delays in diagnosis may contribute to undertreatment, continued pain, and prolonged symptom impact which impairs women’s quality of life, helping patients to recognize their symptoms is a crucial step toward diagnosis and effective management of endometriosis” (Bendifallah et al., 2022).  

This research highlights the importance of patients monitoring their symptoms and working with their healthcare provider to achieve that earlier diagnosis and treatment. Some of these symptoms might include:

• Severe pain during menstruation (see “Pain“)
• Pelvic or abdominal pain not associated with menses
• Low back and/or leg pain
• Pain with sex (see “Sexual Functioning“)
• Painful bowel movements
• Stomach problems including nausea, bloating, diarrhea and/or constipation (see “Bowel/GI“)
• Fatigue (see “Fatigue” and “Inflammation“)
• Infertility (see “Fertility Issues“)

For more information on symptoms of endometriosis, see https://icarebetter.com/endometriosis-symptoms/ . 

Here is a link to what the researchers used: https://ziwig.com/ 

Bendifallah, S., Puchar, A., Suisse, S., Delbos, L., Poilblanc, M., Descamps, P., … & Daraï, E. (2022). Machine learning algorithms as new screening approach for patients with endometriosis. Scientific Reports, 12(1), 1-12. Retrieved from  https://www.nature.com/articles/s41598-021-04637-2  

3 years ago Endometriosis , Endometriosis Education

Pain- it’s complicated 

Pain is a complex phenomenon, with multiple contributing factors. It is also one of the most prevalent symptoms of endometriosis. Pain can be a mix of several factors, such as inflammation, nerves, and myofascial components. Maddern et al. (2020) looked at the inflammatory and nerve component to pain with endometriosis. They report that the inflammation caused by the presence of endometriosis lesions activates sensory nerves and pain pathways. This activation of nerves then signals the body to incite more inflammation, which leads to more nerve activation. 

The longer this goes on then it creates a positive feedback loop where the nerves are primed for pain (which is part of the reason why earlier intervention is important). Maddern et al. (2020) note that in endometriosis lesions there are “increased density of small, unmyelinated nerve fibers.” They report that the “vast majority of these unmyelinated nerve fibers have been identified as C-fiber sensory afferents, unmyelinated nerves that typically function as nociceptors, implicating them strongly in the generation of CPP [chornic pelvic pain] in endometriosis” (Maddern et al., 2020). The authors report that the “early removal of lesions, before they established nerve fiber innervation” is important (Maddern et al., 2020).  

Maddern et al. (2020) also state that this activation of nerves in one area can cause cross activation of other nerve pathways in nearby organs (such as colon and bladder). Endometriosis lesions can promote the growth of more nerves and blood vessels called neuroangiogenesis. “Neuroangiogenesis aids irritation and invasion of existing nerves” and “the close proximity of endometrial adhesions and lesions to pelvic nerves can cause their encapsulation or compression, which contributes to CPP [chronic pelvic pain] associated with endometriosis” (Maddern et al., 2020). People with “endometriosis have a high comorbidity rate with other chronic pain syndromes associated with peripheral and central changes in pain processing, including, fibromyalgia, migraine headaches, IBS and painful bladder syndrome” (Maddern et al., 2020)  

Another contributing factor to this loop of pain is the affects on muscles and the fascia of the body. “Myofascial pain arises from dysfunction in the muscle and surrounding connective tissue” (Aredo et al., 2017). Aredo et al. (2017) reports that “ongoing visceral input can produce increased muscle tone and spasm” in addition to “‘guarding reflexes,’ which involve heightened sacral reflexes that are triggered by visceral pain and inflammation, could contribute to muscle tightening and result in pelvic floor dysfunction.” This myofascial pelvic pain can manifest as pain with penetration, defecation, and urination (Aredo et al., 2017). As Aredo et al. (2017) points out, “a myofascial component to pelvic pain adds another dimension to a patient’s disease and requires its own diagnosis and treatment.” This involvement of the myofasica can create what are called myofascial trigger points (MTrP). Aredo et al. (2017) states that:  

“Once formed, MTrPs can become a self-sustaining source of pain even after the visceral insult has resolved. Active MTrPs, in particular, serve as a source of ongoing nociception; they can reduce pain thresholds, enhance visceral and referred pain, and sensitize the nervous system. In regard to endometriosis, MTrPs that develop secondary to disease could sustain the pain and dysfunction despite lesion removal and hormonal management.” 

This is just the tip of the iceberg in the complicated process of pain with endometriosis. It is multifactorial and requires multidisciplinary care.  

References 

Aredo, J. V., Heyrana, K. J., Karp, B. I., Shah, J. P., & Stratton, P. (2017, January). Relating chronic pelvic pain and endometriosis to signs of sensitization and myofascial pain and dysfunction. In Seminars in reproductive medicine (Vol. 35, No. 01, pp. 088-097). Thieme Medical Publishers. Retireved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5585080/  

Maddern, J., Grundy, L., Castro, J., & Brierley, S. M. (2020). Pain in endometriosis. Frontiers in Cellular Neuroscience, 14. Retreived from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7573391/

3 years ago Endometriosis , Endometriosis Education

MRI and expert training

We have noted before that specialized training and experience is highly beneficial in the ability to diagnose and treat endometriosis. This includes the technicians and providers who read imaging prior to surgery. Another study published this year confirms this again with regards to MRI’s. Widschwendter et al. (2022) report that “expert training led to a considerable increase in sensitivities for the overall detection of DIE” and the authors concluded that “after expert training, MRI has a good sensitivity with fair specificity regarding preoperative assessment of presence, location and extent of DIE” (Widschwendter et al., 2022). This can help the surgeon(s) prepare for a team based approach prior to surgery. 

See here for more information on diagnosis: https://icarebetter.com/diagnosis/  

Reference 

Widschwendter, P., Köhler, M., Friedl, T. W. P., Ammann, B., Janni, W., Rhomberg, C., … & Polasik, A. (2022). Diagnosis of presence and extent of deep infiltrating endometriosis by preoperative MRI–improvement of staging accuracy by expert training. Journal of Gynecology Obstetrics and Human Reproduction, 51(1), 102236. Retrieved from https://doi.org/10.1016/j.jogoh.2021.102236  

3 years ago Endometriosis , Endometriosis Education

Endocannabinoids and endometriosis

There has been an increase in research on endocannabinoids and their role in health. There are two main cannibinoid receptors that have been studied. CB1 receptors have been largely studied for their role in the central nervous system, while CB2 is more associated with immune function and has been investigated for its effect on inflammation (Ashton & Glass, 2007). However, one study notes that “CB1 receptors are highly expressed in the uterus” and that “CB2 receptors are preferentially expressed abundantly in the immune system and intestines and in other tissues such as the lungs, uterus, pancreas, and skin” (Bouaziz et al., 2017). The authors of that same study note that “the levels of expression of CB1 and CB2 are variable during the menstrual cycle” (Bouaziz et al., 2017). In addition, endocannabinoids have been found to have an effect on hormones- inhibiting luteinizing hormone and prolactin secretion (Oláh, Milloh, & Wenger, 2008).  

Relating specifically to endometriosis, one study noted that there may be an association between the endocannibinoid system (eCB) and endometriosis-associated pain (Andrieu et al., 2022). Andrieu et al. (2022) states that “endocannabinoid levels fluctuate in inflammatory conditions and as such may take part in endometriosis-associated pain.” McPartland et al. (2014) reports that “emerging literature documents the ‘eCB deficiency syndrome’ as an etiology in migraine, fibromyalgia, irritable bowel syndrome, psychological disorders, and other conditions.” Endometriosis might fit in that eCB deficiency category as another study notes that “some of the studies that we reviewed described endometriosis as an “endocannabinoid deficiency” condition, thereby partially explaining its implication with pain” and that “women with endometriosis have lower levels of CB1 receptors in endometrial tissue” (Bouaziz et al., 2017).  

Emerging evidence suggests that the eCB system is involved in inflammation and pain, and that this system may be altered in those with endometriosis. How can we help our eCB system? First, removing the endometriosis tissue that is contributing to inflammation. McPartland et al. (2014) notes that certain medications help upregulate the eCB system, including acetaminophen, non-steroidal anti-inflammatory drugs, opioids, glucocorticoids, antidepressants, antipsychotics, anxiolytics, and anticonvulsants. The authors do note certain caveats to this, such as “chronic opiate administration, however, may have a deleterious effect on the eCB system” and that “combining NSAIDs with cannabinoids (either eCBs or exogenous cannabinoids) produces additive or synergistic effects” (McPartland et al., 2014). The authors also note that some complementary and alternative medicine also upregulate the eCB system, such as: “massage and manipulation, acupuncture, dietary supplements, and herbal medicines” as well as “lifestyle modification (diet, weight control, exercise…)” along with stress reduction techniques like “meditation, yoga, and deep breathing exercises” (McPartland et al., 2014). The authors also found that “chronic stress impairs the eCB system” and that certain chemicals in the environment (such as pesticides and phthalates) can affect the eCB system (McPartland et al., 2014). 

References 

Andrieu, T., Chicca, A., Pellegata, D., Bersinger, N. A., Imboden, S., Nirgianakis, K., … & Mueller, M. D. (2022). Association of endocannabinoids with pain in endometriosis. Pain, 163(1), 193-203. Retrieved from https://pubmed.ncbi.nlm.nih.gov/34001768/  

Ashton, J. C., & Glass, M. (2007). The cannabinoid CB2 receptor as a target for inflammation-dependent neurodegeneration. Current neuropharmacology, 5(2), 73-80. doi: 10.2174/157015907780866884 

Bouaziz, J., Bar On, A., Seidman, D. S., & Soriano, D. (2017). The clinical significance of endocannabinoids in endometriosis pain management. Cannabis and cannabinoid research, 2(1), 72-80. Retrieved from https://www.liebertpub.com/doi/full/10.1089/can.2016.0035  

McPartland, J. M., Guy, G. W., & Di Marzo, V. (2014). Care and feeding of the endocannabinoid system: a systematic review of potential clinical interventions that upregulate the endocannabinoid system. PloS one, 9(3), e89566. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951193/  

Oláh, M., Milloh, H., & Wenger, T. (2008). The role of endocannabinoids in the regulation of luteinizing hormone and prolactin release: Differences between the effects of AEA and 2AG. Molecular and cellular endocrinology, 286(1-2), S36-S40. Retrieved from https://pubmed.ncbi.nlm.nih.gov/18308464/ 

3 years ago Endometriosis , Endometriosis Education , Menopause Endometriosis No comment

Endometriosis After Menopause: Everything You Need To Know

If you’ve been told that endometriosis goes away after menopause, this may not be the case. So, this may not be a great strategy if you’re trying to “wait out” endo through perimenopause and into menopause. 

It is reasonable to think that chronic conditions of your female reproductive organs, like endo, might also go away when you stop having periods. Here’s a look at how endo may or may not change after menopause, based on what we know about molecular biology and hormonal changes as you get older.

This article will cover:

1- Does menopause cure endometriosis?

2- Endometriosis management after menopause

3- Endometriosis after menopause: The molecular biology

4- Endometriosis Symptoms after menopause

5- Endometriosis-molecular level

6- Estrogen replacement after menopause with endo: is it safe?

7- How about compounded natural or bioidentical hormones?

8- How about plant-based phytoestrogens?

9- When is surgery an option for peri and post-menopause endometriosis?

10- Surgical concerns

Does menopause cure endometriosis?

Natural menopause does not occur overnight and it might take years before estrogen levels from the ovaries become negligible.  Active growth of endo may decrease at this point but, given other estrogen sources discussed in this article and internal molecular factors, it may not stop. So, trying to wait out endometriosis until menopause is final may give it another 5 years or more to grow and cause problems.  An active treatment strategy to address endo that persists into peri-menopausal years might limit the damage and lead to better results.    

Endometriosis management after menopause

After menopause, the management of endometriosis may become more difficult because by this point in life endo may have been present for decades, even if previously removed partially once or twice by surgery.  At this point symptoms may be due to endo as well as scarring and fibrosis, which is part of the body’s normal healing process. The associated problem is that fibrosis and scar does not respond to any medical therapy.  This, in turn, means that surgery is the main, if not the only, option for treatment after menopause in many cases. Of course, everyone is different and pelvic floor therapy and supportive care are also in the mix.   

Endometriosis After Menopause: The Molecular Biology

Endometriosis cells and tissue look very similar to the normal uterine endometrial lining.  Both are stimulated to grow and both try to shed monthly under cycling hormonal influence.  During a menstrual period,  endometrial tissue has the ability to shed and exit via the cervix and vagina.  Unfortunately, the similar-looking endometriosis tissue has no way to exit the body and gets trapped, causing inflammation, scarring, and pain.

Uterine endometrial tissue needs the hormone estrogen to grow, and usually, but not always, so does endometriosis. When you go through menopause naturally, your ovaries produce less estrogen. This causes symptoms such as hot flashes and night sweats. But the commonly held belief is that endometriosis may improve, or even go away, with the reduction in estrogen production by ovaries. We now understand why this does not happen in all women through molecular biology research.   

Endometriosis at a Molecular Level

While many factors control endo growth, including immunologic ones, exploring the molecular biology of hormones in menopause suggests that hormones can undoubtedly be a big part of the picture. In addition to the usual conversation about external estrogen from ovaries, which decreases towards menopause, intra-cellular production of estrogens also plays a critical role in the pathogenesis of endometriosis. This increases in peri and postmenopausal women who have persistent active endometriosis lesions.  

Without getting lost in the details of hormone enzyme activation and deactivation, which results from genetic switches getting turned on and off, suffice to say that research supports the following. There is local estrogen production in endometriosis cells, which activates other feedback loops at the cellular level. This activation of loops causes even more estrogen production and resistance to progesterone (the balancing hormone). This affects macrophages and pro-inflammatory cytokines (e.g., TNF-α and IL-1β), which sets off another chain reaction. These also create molecular signals (e.g., VEGF) that stimulate microscopic blood vessel formation to feed the endo cells and activate anti-apoptotic genes (e.g., Bcl-2), creating more endo growth. This leads to local tissue trauma, nerve stimulation, fibrosis, and pain. 

Endometriosis Symptoms After Menopause

What happens to your symptoms could depend on the severity of your symptoms before menopause and hormonal and inflammatory balance. If your endometriosis is mild, it may get better with menopause. If your disease is severe, symptoms are more apt to persist. Why? Several reasons: scarring and fibrosis that only gets worse and a molecularly more active endo type that persists and keeps growing after menopause. It is currently impossible to predict what type you may have and what molecular signals are in play in any given individual.   

If your symptoms don’t improve even after you’ve stopped having menstrual cycles, surgery may be the best option for you. Surgery to remove all of your endometriosis and fibrosis will often be more effective than medication. Years of growth and fibrosis can lead to more local nerve noxious stimulation, and the first step is to remove this. Medications, including natural enzyme supplements, will not dissolve scars, and any persistent active endo is also more difficult to control after menopause. Many other molecular signaling paths are operational, making it harder to determine the best target to block abnormal effects. All the various inter and intracellular signaling forms are under intense research. 

Estrogen Replacement After Menopause with Endo: Is It Safe?

All of the above concerns how, when, and where estrogen is produced. But how this affects cells in your body, including endometriosis cells, depends on the presence or absence of estrogen receptors. You can think of the estrogen molecules as little keys which float through your bloodstream and tissues (or locally produced on or near the endo cells), and the estrogen receptors are like little locks present in and on the cells. The two have to connect, or the key has to fit the lock to produce a molecular signaling event at the cellular level. One of these signaling events is whether or not to stimulate growth. 

There are different estrogen receptors called estrogen receptor alpha (ERα) and beta (ERβ). In some estrogen-sensitive tissues, like the breast or uterus, these two types can be variably pro-growth, and in others, they can be inhibitory. In addition, there is a progesterone receptor (PR) that binds progesterone in the same fashion via a lock and key mechanism. Endometriosis cells have overexpression of mainly ERβ and underexpression of PR. This imbalanced expression of receptors leads to progesterone resistance and amplification of the growth signal provided by estrogen. This only scratches the surface of incredible complexity, but hopefully, you get the idea. 

In general, to alleviate postmenopausal hot flashes, depending on whether you have a uterus or not after menopause, estrogen alone is often prescribed (no uterus) or combined with progesterone (the uterus is in). This is because progesterone balances the effect of estrogen on the uterus and reduces the risk of endometrial cancer due to estrogen-induced overgrowth of the endometrium.   

The exact ratio of alpha (ERα) and beta (ERβ) and the amount of PR present can be variable in endometriosis. It can change over time into menopause or after surgically induced menopause due to early removal of the ovaries. So, theoretically, any hormonal replacement will affect endo cells to some degree and may amplify the degree to which local estrogen is produced, as discussed above. The degree to which this happens and evolves is not predictable from person to person. 

Where does that leave us? It comes down to risk vs. benefit discussion because a reasonable amount of estrogen replacement after menopause can help the quality of life and bone health. Studies have not proven whether or not this can activate or amplify endometriosis growth after menopause. 

How About Compounded Natural or Bioidentical Hormones?

The long answer to this is very complex and depends highly on the quality of these hormones and whether or not the dosages are correctly mixed and, if one were to use combinations that are applied to the skin, degree of absorption, and much more. The problem with synthetic vs. natural arguments notwithstanding, the effect on the very variable and unpredictable receptor signaling described above remains theoretically unchanged. There is also a higher risk of inadvertently taking a higher dose since many are locally prepared and thus subject to less regulation. Get a highly qualified opinion and possibly several opinions and do a lot of due diligence personal research before going this route.  

How About Plant-Based Phytoestrogens?

Plant estrogens, otherwise known as phytoestrogens, uniquely attach to estrogen receptors. They can bind to either type of estrogen receptor but preferentially bind to ERβ. In doing so, they take up space and block the ability of regular estrogen to bind to the receptor. In terms of helping menopausal symptoms, estrogen receptors also exist on blood vessels, and the binding of phytoestrogens helps stabilize the blood vessels, reducing hot flashes. The effect is less than that caused by regular estrogen but is helpful in many women. At the same time, there can be a relative blockade at the endometriosis cell level. Again, given the differences regarding receptors and signaling effects between individuals, this is not 100% predictable but can be a win-win nonetheless.  

Along the natural, integrative line of thought, a couple of corollary strategies is how the estrobolome and seaweed figure into this puzzle. First, the estrobolome is part of your gut microbiome that can metabolize the excess estrogen in your body and eliminate it. This includes the excess estrogen produced by ovaries, local estrogen created at the cell level, and the toxin type of estrogens called xenoestrogens. Keeping your microbiome healthy and happy with probiotic supplements or fermented foods is the action time. Second, we know that seaweed can predictably reduce circulating estrogen. This can retard any hormonal influence on the regrowth of endo, especially if the bulk of any disease is removed surgically. 

Read more: Postmenopausal Malignant Transformation of Endometriosis

When is Surgery an Option for Peri and Post-Menopause Endometriosis?

If symptomatic endo is suspected as one gets closer to menopause, it merits discussion about expert removal of as much as possible via excision surgery. Ideally, a surgeon should remove all visible lesions in this case. Even if undetectable microscopic implants are left behind, removal of pain-producing scars/fibrosis and the bulk of any active endo limits the number of cells that might grow back over time, whether or not hormonal replacement is taken. 

There is one more reason for considering surgical removal. If you have a family history of cancer or have active endo as you enter menopause, given the known molecular abnormality overlap between endo and cancer (e.g., ARID1A), the risk of malignant degeneration may be higher. This is a highly individualized situation, but some can be critical to balancing the surgical risks vs. potential benefits.    

Surgical Concerns

So, with all of the above in mind, is there a reason NOT to have surgery to remove endo, especially if you have symptoms as you get close to or enter menopause? Of course! Even minimally invasive surgery is not risk-free, and the risks can increase as you get older. Scarring and fibrosis from advanced endometriosis possibly increased from prior surgeries, leading to complications and damage to organs, including the bowel. For this reason, selecting an über expert surgeon at that point in life is crucial.   

An über expert surgeon can handle pretty much any possible finding in the pelvis and abdomen. Moreover, they can address oncology risk concerns if you are at higher risk with a family history. This means that the right surgery for cancer would be performed if cancer were suspected or found during surgery. But short of cancer, this surgeon needs to be able to handle small bowel, rectal, bladder, ureteral involvement, even disease in the upper abdomen and diaphragm. Deep infiltrating endometriosis implants are more common if they have been allowed to grow over the years. This full-spectrum surgeon might be a gynecologic oncologist who has experience in endo excision. But even they may need a cardiothoracic surgeon if endo involves the chest cavity. Cardiothoracic surgery is an entirely separate specialty of surgery. Alternatively, a minimally invasive surgery team including an endo excision trained GYN surgeon, a urologist, a general surgeon, and possibly more would need to be available. It can be a logistic challenge to gather such a team, but this is usually possible in centers that specialize in endometriosis surgery.

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Read on endometriosis forum: What are the long term side effects of lupron?

Get in touch with Dr. Steve Vasilev

More articles from Dr. Steve Vasilev:

Understanding the Connection between Endometriosis and Cancer

How to tell the difference between endometriosis and ovarian cancer

What would happen to the signs and symptoms of endometriosis after menopause?

The author of this article, Dr. Steven Vasilev MD is a fellowship-trained, triple board-certified integrative gynecologic oncologist specializing in complex pelvic robotic surgery. He focuses on advanced & reoparative endometriosis excision and molecular integrative healing, especially as it applies to women of older reproductive age and in menopause.

3 years ago Endometriosis , Endometriosis Education

Gut microbiota and endometriosis

There is a lot of interest in research about the effect of the gut microbiota on our health. The gut microbiota is the collection of microorganisms that live in the human gastrointestinal tract. The “intestinal bacteria play a crucial role in maintaining immune and metabolic homeostasis and protecting against pathogens” and “altered gut bacterial composition (dysbiosis) has been associated with the pathogenesis of many inflammatory diseases and infections” (Thursby & Juge, 2017).

Xu et al. (2017) note that: 

“Gut microbiota can interact with the central nervous system through the gut–brain axis, thus affecting the host’s chronic stress level, such as anxiety and depression. Current researches show that patients with endometriosis often have a high level of chronic stress, which will in turn aggravate endometriosis by activating the β-adrenergic signaling pathway…. We found that in patients with endometriosis, the dysbiosis of gut microbiota was associated with their stress levels. Furthermore, the levels of Paraprevotella, Odoribacter, Veillonella, and Ruminococcus were significantly reduced in chronic stressed endometriosis patients, suggestive of a disease-specific change of gut microbiota at the genus level. Compared to the healthy women, the expression levels of inflammatory cytokines, nuclear factor-κB p65, and cyclooxygenase-2 increased in the chronic stressed endometriosis patients, indicating that the dysbiosis of gut microbiota may activate the inflammatory pathway of gut–brain axis.” 

Perrotta et al. (2020), while exploring the gut and vaginal microbiota of people with endometriosis, found that “vaginal microbiome may predict stage of disease when endometriosis is present”. That is pretty specific microbiota! It is not clear whether the inflammation from endometriosis causes changes to the gut microbiota and/or the gut microbiota increases inflammation associated with endometriosis (or both). However, Bolte et al. (2021) found that: 

“Higher intake of animal foods, processed foods, alcohol and sugar, corresponds to a microbial environment that is characteristic of inflammation, and is associated with higher levels of intestinal inflammatory markers…. Modulation of gut microbiota through diets enriched in vegetables, legumes, grains, nuts and fish and a higher intake of plant over animal foods, has a potential to prevent intestinal inflammatory processes at the core of many chronic diseases.”  

This suggests that a healthy diet may help improve the gut microbiota and potentially inflammation. It is not known whether this would have a significant impact on symptoms experienced.  

References 

Bolte, L. A., Vila, A. V., Imhann, F., Collij, V., Gacesa, R., Peters, V., … & Weersma, R. K. (2021). Long-term dietary patterns are associated with pro-inflammatory and anti-inflammatory features of the gut microbiome. Gut, 70(7), 1287-1298. Retrieved from   https://gut.bmj.com/content/70/7/1287  

Perrotta, A. R., Borrelli, G. M., Martins, C. O., Kallas, E. G., Sanabani, S. S., Griffith, L. G., … & Abrao, M. S. (2020). The vaginal microbiome as a tool to predict rASRM stage of disease in endometriosis: a pilot study. Reproductive Sciences, 27(4), 1064-1073. Retrieved from https://link.springer.com/article/10.1007/s43032-019-00113-5 

Thursby, E., & Juge, N. (2017). Introduction fo the human gut flora. Biochem J, 474(11), 1823-1836. doi: 10.1042/BCJ20160510 

Xu, J., Li, K., Zhang, L., Liu, Q. Y., Huang, Y. K., Kang, Y., & Xu, C. J. (2017). Dysbiosis of gut microbiota contributes to chronic stress in endometriosis patients via activating inflammatory pathway. Reproductive and Developmental Medicine, 1(4), 221. Retrieved from https://www.repdevmed.org/article.asp?issn=2096-2924;year=2017;volume=1;issue=4;spage=221;epage=227;aulast=Xu  

3 years ago Endometriosis , Endometriosis Education

The effect of invalidation

We are grateful to have the author of the below study write this piece for us:

The effect of personalized invalidation of symptoms by healthcare providers on patient depression: The mediating role of self-esteem

Allyson C. Bontempo, MA, Ph.D. Candidate in Health Communication, Rutgers University

“It’s all in your head.” “It’s psychosomatic.” “It’s anxiety.” “It’s depression.” “You’re overreacting.” “It’s normal.” “You just have really bad [insert specific bodily experience here].” Really, any use of the word ‘just’ or ‘only’ preceding clinicians’ verbal explanation that downplays the cause and/or severity of patients’ presumed-to-be “normal” symptom(s).

Many in the patient and health advocacy communities refer to this as ‘medical gaslighting.’ However, in the academic world—in which I wish work on this topic is read and ultimately accepted by clinicians—I refer to it more neutrally as ‘symptom invalidation.’ In essence, the patient’s perspective regarding the existence, cause, and/or severity of one or more of their symptoms is not acknowledged or deemed legitimate (i.e., is invalidated) by another. 

Regardless of what it may be called and by whom, symptom invalidation is all too familiar to too many individuals. It has likely been experienced by everyone at one point or another in their life, from clinicians and/or by family, friends, significant others, coworkers, or even strangers. Though, the implications are greater when it occurs from clinicians, as they are the ones responsible for patients’ care.

It appears to be more prominent among illnesses that are diagnoses of exclusion—in other words, illnesses for which there is no precise or relatively certain means of diagnosis. Common examples include myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS; e.g., Anderson et al., 2012), fibromyalgia (e.g., Sim & Madden, 2008), dysautonomia (e.g., Stiles et al., 2018), long haul COVID (e.g., Roth & Mariacarla, 2021), and, perhaps most evidently, undiagnosed illness (e.g., Nettleton, 2006).

But what about endometriosis? Endometriosis is not a diagnosis of exclusion and can more or less be ‘definitively’ diagnosed. Although no diagnosis is ever 100% certain (National Academies of Sciences, Engineering, and Medicine, 2015), it is a diagnosis that arguably can be decided on with greater certainty than many other illnesses. Furthermore, it is a disease that is roughly as common as diabetes (Centers for Disease Control and Prevention, 2021) and that falls within a specialty that, unlike most other specialties, has annual well visits built into its system (Bontempo & Mikesell, 2020). This, then, begs the question: How can the high prevalence of invalidation among individuals with endometriosis be adequately explained and justified given these unique factors that should, in theory, make misdiagnosis and invalidation less likely to occur?

Over the past five years, since I began my work on endometriosis, I have noticed that qualitative study after qualitative study has either investigated symptom invalidation or symptom invalidation has surfaced in the results of larger research investigations (for example, studies investigating the patient experience more broadly, studies investigating the healthcare experiences or needs of patients, studies investigating the diagnostic journey of patients). This work has become so expansive over the years (see Pettersson & Berterö, 2020) that I fear we’ve reached a point at which we are no longer moving the study of symptom invalidation forward in a meaningful way. Although it is important to report on the patient experience and have those stories told and heard, it is now necessary to move beyond this work so that we are no longer continuing to only report on the problem and are instead (or also) reporting on attempts at change.

Thinking about the science of behavior change, we must consider our target audience – who are those we wish to reach with this work if our goal is to effect change? Presumably those who can effect this given change. Is it clinicians? Healthcare organizations? Medical education? Policymakers? All of the above?

Regardless of the level at which our target audience is situated—whether at the interpersonal level (e.g., individual clinicians) or at the state or federal level (e.g., policymakers)—in order for others who are not impacted by endometriosis nor members of endometriosis advocacy organizations to more deeply appreciate the importance and impact of symptom invalidation in the medical encounter for patients, we must ‘meet them where they are.’ And that, I believe, is through the use of evidence in the form of aggregated, statistical data that show that symptom invalidation is ‘statistically and significantly’ associated with negative health outcomes. We know that patient-centered communication (the opposite of symptom invalidation) improves care, well-being, healthcare spending, health disparities, and is simply the ‘right’ thing to do (Epstein et al., 2010). And this, here, may be our selling point – there is something to gain for all stakeholders involved. But we haven’t gotten to this point yet.

One of the most obvious and perhaps damaging effects symptom invalidation has on patients is that, especially when there are repeated negative medical encounters of this nature and over a long span of time, it makes them feel pretty awful about themselves, even to the point where they begin to no longer trust themselves (at least until the point of diagnosis, which seems to serve to finally validate their experiences and eliminate the belief or feeling that they are ‘crazy’; e.g., see Grogan et al., 2018). Not only are they suffering physically, but they are also needlessly suffering emotionally. For this reason, this became my starting point.

With the help of several endometriosis organizations and centers that posted the study advertisement to their open social media sites, I administered a one-time, anonymous, online survey for individuals with endometriosis. Survey topics included demographic and endometriosis-related information, experiences of being invalidated in medical encounters, and several self-report questionnaires capturing ratings of their medical encounters and current psychological and physical health. The variables that were analyzed that stemmed from the questionnaires were self-esteem (Rosenberg, 1965) and depression (Radloff, 1977). Furthermore, I constructed two questionnaires specifically for this study in an attempt to capture this idea of symptom invalidation after participants were asked to refer to a particular medical encounter prior to their diagnosis in which they perceived the clinician was dismissive of their symptoms (i.e., symptom invalidation) and/or of them, personally (i.e., personalized invalidation).

I analyzed the data after a sufficient number of individuals with endometriosis had taken the survey. First, I looked at symptom invalidation (e.g., “The clinician dismissed my symptoms”). Thus, I looked at whether or not patient ratings of increased symptom invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased symptom invalidation from their clinician, is it significantly associated with reduced self-esteem as well as increased depression? The results were mixed: increased symptom invalidation was significantly associated with reduced self-esteem but not with increased depression.

Next, I looked at personalized invalidation (e.g., “The clinician dismissed me”). Thus, I looked at whether or not patient ratings of increased personalized invalidation were significantly associated with patient ratings of 1) reduced self-esteem and 2) increased depression. In short, I explored the following questions: if patients report increased personalized invalidation from their clinician, is that increased personalized invalidation significantly associated with reduced patient self-esteem as well as increased patient depression? In contrast to my examination of symptom invalidation above, the results for personalized invalidation, here, showed that increased personalized invalidation was associated with both self-esteem and depression. First, increased personalized invalidation was associated with decreased patient self-esteem and, second—in contrast to the results of symptom invalidation—increased personalized invalidation was also significantly associated with higher patient depression.  

Given the results presented in the previous paragraph, I lastly looked at whether or not a lowering of patient self-esteem is the mechanism through which increased personalized invalidation is associated with increased patient depression. In other words, I explored and tested the following question: does increased personalized invalidation from clinicians lead to lowered self-esteem ratings among patients, and does this lowered self-esteem, in turn, lead to increased depression ratings? Therefore, what I wanted to test was whether or not the lowering of patient self-esteem is a factor that may be responsible for the correlation between increased personalized invalidation and increased patient depression. The analysis I ran subsequently to test this more complex chain of associations indeed confirmed my hypothesis.

It is important to note that this study was observational (i.e., one ‘snapshot’ of the same group of patients for which different characteristics (or variables) and their associations are observed or assessed). This study was therefore not experimental (i.e., participants are assigned to one of at least two different groups on a random basis, with each group consisting of some different condition or manipulation). Therefore, we cannot make the claim that invalidating messages from clinicians causes depression by first lowering patients’ self-esteem. The significant, last analysis I conducted is helpful in supporting this claim but is not enough to actually make this claim. However, I want to emphasize that I am also not saying that invalidating messages from clinicians does not cause depression by first lowering patients’ self-esteem. This could very well be the case; however, the type of study I conducted (i.e., an observational, cross-sectional survey) was not designed to support this claim. An experimental study needs to be conducted to answer this question of whether or not one thing causes another (Kazdin, 2021).

The findings of this study are not actually ‘news,’ as it is all too commonly reported in the existing qualitative work and within health advocacy communities. However, these findings may be therapeutic to patients – they can validate patients’ experiences with these negative medical encounters and provide hope that work is indeed being conducted to bring this issue that largely lives within health advocacy communities to the academic sphere and those who really need to know this. Furthermore, these findings provide the first quantitative support via statistical data that symptom invalidation—particularly, personalized invalidation—can have a real, psychological impact on patients and therefore cannot (and should not) be ‘dismissed’ as benign. My hope is that a program of research can continue to be developed to shine light on the negative physical and psychological impact of symptom invalidation on patients and, ultimately, effect change.

References:

Anderson, V. R., Jason, L. A., Hlavaty, L. E., Porter, N., & Cudia, J. (2012). A review and meta-synthesis of qualitative studies on myalgic encephalomyelitis/chronic fatigue syndrome. Patient Education & Counseling, 86, 147-155. https://doi.org/10.1016/j.pec.2011.04.016

Centers for Disease Control and Prevention. (2020). National diabetes statistics report 2020: Estimates of diabetes and its burden in the United States. Retrieved December 4, 2020 from: https://www.cdc.gov/diabetes/pdfs/data/statistics/national-diabetes-statistics-report.pdf

Epstein, R. M., Fiscella, K., Lesser, C. S., & Stange, K. C. (2010). Why the nation needs a policy push on patient-centered health care. Health Affairs, 29, 1489-1495. https://doi.org/10.1377/hlthaff.2009.0888

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology & Health, 33, 1-15. https://doi.org/10.1080/08870446.2018.1496252

Kazdin, A. E. (2021). Research design in clinical psychology. Cambridge, UK: Cambridge University Press.

National Academies of Sciences, Engineering, and Medicine. (2015). Improving diagnosis in health care. Washington, DC: The National Academies Press.

Nettleton, S. (2006). ‘I just want permission to be ill’: Towards a sociology of medically unexplained symptoms. Social Science & Medicine, 62, 1167-1178. https://doi.org/10.1016/j.socscimed.2005.07.030

Pettersson, A., & Berterö, C. M. (2020). How women with endometriosis experience health care encounters. Women’s Health Reports, 1, 529-542. https://doi.org/10.1089/whr.2020.0099

Radloff, L. S. (1977). The CES-D scale: A self-report depression scale for research in the general population. Applied Psychological Measurement, 1, 385-401. https://doi.org/10.1177/014662167700100306

Rosenberg, M. (1965). Society and the adolescent child. Princeton, NJ: Princeton University Press.

Roth, P. H., & Mariacarla, G. B. (2021). The contested meaning of “long COVID”–Patients, doctors, and the politics of subjective evidence. Social Science & Medicine, 114619.

Sim, J., & Madden, S. (2008). Illness experience in fibromyalgia syndrome: A meta-synthesis of qualitative studies. Social Science & Medicine, 67, 57-67. https://doi.org/10.1016/j.socscimed.2008.03.003

Sowislo, J. F., & Orth, U. (2013). Does low self-esteem predict depression and anxiety? A meta-analysis of longitudinal studies. Psychological Bulletin, 139, 213.

3 years ago Endometriosis , Endometriosis Education

Happy new year!

We hope that your new year brings you health and happiness. If you are still struggling to find a diagnosis, find treatment options, or want to find more resources, we hope our website can help you on your journey. Explore more at https://icarebetter.com/ and on our private Facebook group https://www.facebook.com/groups/418136991574617/ .  

3 years ago Endometriosis , Endometriosis Education No comment

Understanding Endometriosis Pain: Types, Evaluation, and Treatment

Introduction

Endometriosis is a chronic gynecological condition where tissue similar to the lining inside the uterus grows outside it, causing pain and potentially leading to fertility issues. The types of pain varies quite a bit because of different organ involvement, among other factors. 

Common Endometriosis Pain Symptoms

Here are some of the more common types of pain that endometriosis can manifest: 

1. Dysmenorrhea: Severe menstrual cramps that can start before and extend beyond the menstrual period.
2. Non-menstrual Pelvic & Abdominal Pain: Chronic pain in the lower abdomen and pelvis, unrelated to menstruation, most often related to intestinal bloating (endo-belly). 
3. Dyspareunia: Pain during or after sexual intercourse.
4. Dyschezia: Painful bowel movements.
5. Dysuria: Painful urination, often exacerbated during menstruation.

There can be many other types of pain which vary depending on what organ might be involved. This makes the cause very difficult to diagnose correctly, and endo is often not the first condition that comes to mind. However, since it can cause many forms of pain, it must always be considered. More unusual examples include leg pain where the sciatic or femoral nerves may be involved or compressed, or pain with breathing due to diaphragmatic or even pleural (peritoneum within the chest cavity) and lung involvement. 

Evaluation of Endometriosis Pain

Evaluating endometriosis pain effectively is crucial for proper diagnosis and treatment planning. The Visual Analog Scale (VAS) and the Numerical Rating Scale (NRS) are recommended for their balance of strong and weak points compared to other scales (Bourdel et al., 2021). Additionally, the Endometriosis Pain Daily Diary (EPDD), a patient-reported outcome (PRO) instrument, has been developed to assess endometriosis-related pain and its impact on patients’ lives (van Nooten et al., 2018).  There are other outcomes assessment tools and it is important to use at least one of them so you can document whether is not something is actually helping or not. 

Pain Triggers in Endometriosis: Mechanisms and Treatments

So, how does endo actually cause pain?  It is due to a combination of overlapping nociceptive (nerve receptor activation), inflammatory, and neuropathic pain.  At the end of the day, pain is pain, but this opens up a number of different treatment options that can be used together to improve quality of life. Trying to address only one or two of these causes may not get you the best results.  

First, here are the most common triggers and treatment options. 

Peritoneal Prostaglandin Stimulation

Peritoneal prostaglandins are inflammatory mediators that play a significant role in the pain associated with endometriosis. They are produced by endometriosis lesions and contribute to inflammation and pain by sensitizing nerve endings in the pelvic region peritoneum.

Best Treatments:

1. NSAIDs: Nonsteroidal anti-inflammatory drugs, such as ibuprofen and naproxen, are effective in reducing inflammation and prostaglandin production, thereby alleviating pain.  This does not actually treat the endometriosis. But knowing which type of NSAID is best for you is helpful for decisions.  
2. Hormonal Therapies: Medications like oral contraceptives, progestins, and GnRH agonists or antagonists can help reduce the menstrual cycle and thus decrease prostaglandin production. Significant risk vs. benefit considerations exist and requires expert input to get to the best choices that optimize overall outcomes.  This approach, just like NSAID treatment, does not treat the endometriosis well due to relative progesterone resistance, among other factors. 
3. Surgical Interventions:
   1. Laparoscopic and Robotic Surgery: Minimally invasive procedures provide two benefits.  First of all, a biopsy, which is most often obtained by surgery, is the only way to be certain that endometriosis is at least part of the reason for pain. Second, it has the potential for relatively immediate relief of pain because it removes the lesions which directly affect nociceptive stimulus and removes the chronic inflammation stimulus which affects the pelvic floor.  Surgery not only improves symptoms but is also a cornerstone therapy for endometriosis. 
   2. Hysterectomy: In severe cases, removing the uterus may be considered as a last resort to alleviate pain.  In some cases, for example, the uterus is essentially encased in endometriosis and fibrosis.  But otherwise, it is not necessary and is obviously inconsistent with child-bearing.  However, considerations related to possible coexisting adenomyosis may impact decisions about pain relief vs fertility.  

Pelvic Floor Stimulation

Pelvic floor dysfunction is a common issue in women with endometriosis, often resulting from chronic pain and muscle spasms. This can lead to additional pain and discomfort, especially during activities like intercourse, bowel movements, or urination.

Best Treatments:

1. Pelvic Floor Physical Therapy: Specialized physical therapy focusing on the pelvic floor can help reduce muscle spasms, improve muscle function, and alleviate pain.  This may include external and internal manipulation as well as transcutaneous electrical nerve stimulation (TENS). 
2. Biofeedback Therapy: This technique uses electronic monitoring to help patients gain awareness and control over their pelvic floor muscles.
3. Trigger Point Injections: In some cases, injections of anesthetics or steroids directly into the painful areas of the pelvic floor muscles can provide relief.

Central Nervous System Sensitization

Central nervous system (CNS) sensitization refers to the heightened sensitivity of the CNS to pain signals, often seen in chronic pain conditions, including endometriosis. This can result in exaggerated pain responses to stimuli that would not normally be painful.

Best Treatments:

1. Cognitive-Behavioral Therapy (CBT): This psychological treatment helps patients manage pain by changing negative thought patterns and behaviors associated with chronic pain.
2. Transcranial Direct Current Stimulation (tDCS): This non-invasive brain stimulation technique has been shown to decrease pain perception in patients with chronic pelvic pain and endometriosis (Mechsner et al., 2023).
3. Pharmacological Treatments: Medications such as anticonvulsants (e.g., gabapentin, pregabalin) and antidepressants (e.g., amitriptyline) can help reduce neuropathic pain by modulating the pain pathways in the CNS.
4. Interdisciplinary Approach: Combining various treatments, including medication, physical therapy, and psychological support, can be effective in managing chronic pain due to CNS sensitization (Allaire et al., 2017).

General Holistic and Integrative Approaches

1. Dietary Changes:
   • Anti-inflammatory Diets: Foods rich in fruits, vegetables, lean proteins, and omega-3 fatty acids, can help reduce inflammation and pain. You should especially consider brassica veggies, leafy greens, berries, fatty fish like salmon, and nuts.
   • Avoiding Certain Foods: Reducing intake of processed foods, caffeine, alcohol, and high-fat meats may help alleviate symptoms.
2. Acupuncture and Herbal Medicine:
   • Acupuncture: This Traditional Chinese medicine technique involves inserting thin needles into specific points on the body to relieve pain. Whether you believe it is related to meridians or nerve pathways, we know it is effective in many people. 
   • Herbal Treatments: Herbs like turmeric (curcumin), ginger, and chamomile have anti-inflammatory properties and can be used as supplements or in teas.
3. Endocannabinoids: The “internal” endocannabinoid system (ECS) has emerged as a significant pharmacological target for managing endometriosis-related pain (Bouaziz et al., 2017).
4. Cannabis: “External” use of CBD interfaces with the internal system because the target receptors are shared.  In addition, under expert guidance and where legal, THC may also help.  However, the latter has psychoactive effects which may not be desired.  
5. Mind-Body Techniques:
   • Yoga: Incorporates physical postures, breathing exercises, and meditation to reduce stress and improve flexibility and pain management.
   • Meditation and Mindfulness: Techniques that focus on reducing stress and improving emotional well-being, can indirectly help manage chronic pain.
   • Cognitive-Behavioral Therapy (CBT): This specific psychological treatment helps patients manage pain by changing negative thought patterns and behaviors.
6. Supplements and Natural Remedies:
   • Omega-3 Fatty Acids: Found in fish oil supplements, these can help reduce inflammation.
   • Vitamin D: Supplementing with vitamin D can improve immune function and potentially reduce endometriosis symptoms.
   • Magnesium: This mineral helps relax muscles and reduces cramping and pain.
7. Lifestyle Modifications:
   • Regular Exercise: Moderate physical activity, such as walking, swimming, or yoga, can help reduce pain by releasing endorphins, the body’s natural painkillers.
   • Stress Management: Techniques like deep breathing, progressive muscle relaxation, and guided imagery can help manage stress, which can exacerbate pain.

Adenomyosis and Pain Mechanisms

Adenomyosis is a condition, highly related to endometriosis, in which the inner lining of the uterus (endometrium) breaks through or is transported into the muscle wall of the uterus (myometrium). This can cause significant pain and heavy menstrual bleeding. The mechanisms through which adenomyosis causes pain overlap with endo but have some additional separate issues. 

1. Increased Nerve Fiber Density: Studies have shown that increased nerve fiber density in adenomyotic tissue is correlated with more severe pain. This suggests that the proliferation of nerve fibers within the uterine muscle layer is a significant factor in the pain experienced by patients with adenomyosis (Lertvikool et al., 2014).
2. Inflammation and Prostaglandin Release: Adenomyosis leads to chronic inflammation within the uterine muscle, resulting in increased levels of inflammatory mediators like prostaglandins. These mediators cause painful uterine contractions and contribute to the severe pelvic pain associated with the condition (MacGregor et al., 2023).
3. Myometrial Invasion: Adenomyotic lesions invade the myometrium through processes such as epithelial-mesenchymal transition, which can cause pain through abnormal uterine bleeding and severe pelvic discomfort (Tan et al., 2019).  There may also be transportation via lymphatics, but the end result is the same. 
4. Abnormal Uterine Bleeding: The disruption of normal uterine architecture leads to abnormal bleeding patterns, which can exacerbate pain and contribute to dysmenorrhea (painful periods) (López et al., 2020).

Best Treatments for Adenomyosis-Associated Pain

To address the pain associated with adenomyosis, several treatment strategies can be employed:

1. Hormonal Treatments:
   • Gonadotropin-Releasing Hormone (GnRH) Agonists and Antagonists: These drugs reduce estrogen levels, which can shrink adenomyotic lesions and reduce pain.
   • Progestins: Hormonal medications like Dienogest (DNG) can effectively manage pain by suppressing the growth of adenomyotic tissue, though they may be associated with side effects such as abnormal uterine bleeding (Kobayashi, 2023). There is some developing data that natural compounded progesterone works better than synthetic progestins. 
   • Levonorgestrel-Releasing Intrauterine System (LNG-IUS): This device releases a small amount of progestin directly into the uterus, reducing pain and bleeding by suppressing the endometrial tissue growth (Choi et al., 2010).
2. Non-Hormonal Treatments:
   • NSAIDs: Nonsteroidal anti-inflammatory drugs can reduce pain by decreasing inflammation and prostaglandin production.
   • Acupuncture and Herbal Remedies: Traditional Chinese Medicine treatments such as acupuncture and herbal formulas like Shaoyao-Gancao Decoction (SGD) have shown promise in reducing pain by targeting inflammation and muscle relaxation (Guan et al., 2014).
3. Surgical Interventions:
   • Laparoscopic and Robotic Surgery: Minimally invasive procedures can remove some adenomyotic tissue which may lead to some relief but may impact fertility if the uterine cavity is entered.  Also, since adenomyomas are now considered to be part of diffuse adenomyosis, removing all of it is highly problematic if not impossible.  
   • Hysterectomy: In severe cases, removing the uterus may be considered as a last resort to alleviate pain and improve the quality of life for patients who do not respond to other treatments.  Hysterectomy is not always required to effectively treat endometriosis pain.  However, if adenomyosis is also present, which is hard to accurately diagnose with imaging or examination, consideration should be given for a hysterectomy if childbearing is complete. 

Challenges and Future Directions

Communication with your doctor(s) about endometriosis pain can be challenging due to the subjective nature of pain and the complexity of the condition. Improved language and tools have been suggested to enhance patient-practitioner communication (Bullo & Weckesser, 2021). Additionally, ongoing research into genetic correlations and new treatment targets, such as the P2X3 receptor and brain-derived neurotrophic factor (BDNF), is crucial for developing more effective treatments (Ding et al., 2018).  The good news?  There is a lot of research going on regarding chronic pain and it’s not limited to endometriosis.  

Conclusion

Endometriosis pain is a multifactorial issue requiring a comprehensive evaluation and a multifaceted treatment approach. Combining medical, surgical, and holistic treatments can provide the most effective relief and improve the quality of life. For further reading and detailed studies, please refer to the linked references in this article. 

What type of endo pain do you have? And how would you describe it? If you want to find an experienced endometriosis specialist or a different kind of endo provider near you, you can do so on our platform, iCareBetter. 

References and More Information: 

• Bourdel et al., 2021
• van Nooten et al., 2018
• Wang et al., 2019
• Bouaziz et al., 2017
• Bullo & Weckesser, 2021
• Ding et al., 2018

Updated Post: July 29, 2024

3 years ago Endometriosis , Endometriosis Education

Happy Holidays!

In the midst of several different holiday celebrations, people with endometriosis can often struggle to balance activities and symptoms. Grogan, Turley, and Cole (2018) interviewed people with endometriosis and they noted that: 

“Participants spoke about their lives being a constant struggle, where they tried to maintain their personal and working lives whilst dealing with long-term pain. Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals. Coping strategies included avoidance of social events to conserve energy (self-pacing), and avoiding taking painkillers to retain alertness. Women did not feel able to be honest with family and friends about their symptoms, and felt socially isolated and misunderstood.” The researchers noted that “so many women suffer in silence”.  

In the midst of busyness, take time to care for yourself and enjoy what matters to you most. 

Reference 

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis. Psychology & health, 33(11), 1364-1378. Retireved from https://doi.org/10.1080/08870446.2018.1496252 

3 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility , Endometriosis Mental Health 2 comments

How Do Endo Fertility Issues Impact the Mental Health of a Person?

Endometriosis (endo) can cause many issues. Endometriosis patients may have difficulty becoming pregnant or maintaining a full-term pregnancy. Up to 70% of women with endometriosis get pregnant without medical treatment. However, 30 to 50% of patients with endo experience fertility issues and may need endometriosis fertility treatments or surgery. Up to 50% of all women with infertility have endometriosis. According to the abstract in a study published in the International Journal of Women’s Health:

“The most common clinical signs of endometriosis are menstrual irregularities, chronic pelvic pain (CPP), dysmenorrhea, dyspareunia and infertility. Symptoms of endometriosis often affect psychological and social functioning of patients. For this reason, endometriosis is considered as a disabling condition that may significantly compromise social relationships, sexuality and mental health.”

Why Are Women Impacted Emotionally By Reproductive Disorders?

A plethora of reasons exists as to why women can experience deep emotional impact by a diagnosis of a reproductive disorder or a condition that could cause issues with fertility. Some women already worry about getting pregnant anyway, so an endometriosis diagnosis surely doesn’t help. Here’s a shortlist of some reasons reproductive issues can affect the emotional health of women with endometriosis:

• Pressure to conceive right away
• Worries about each stage of the pregnancy, from implantation to delivery
• Pressured to have a child, even if the person is unsure or not ready
• Possible medical interventions, such as IVF
• Stress and emotional drainage that can result from endometriosis fertility treatments
• Possible laparoscopy endometriosis surgery

Multiple studies demonstrate that a woman’s ability to conceive and bear a child plays a big part in her emotional health and self-esteem. While many women don’t want to have children, a large portion does. But, they might not be ready for a baby when they receive their endometriosis diagnosis. According to a study out of the Iranian Journal of Reproductive Medicine:

“While infertility is not a disease, it and its treatment can affect all aspects of people’s lives, which can cause various psychological-emotional disorders or consequences including turmoil, frustration, depression, anxiety, hopelessness, guilt, and feelings of worthlessness in life.”

Endometriosis Patients with Fertility Issues Need Emotional Support

Most endometriosis patients with fertility issues benefit by having a mental health provider as part of their multidisciplinary team.

Endometriosis impacts many facets of a person’s life. A recent study concluded that:

“Furthermore, there is an urgent need to develop and evaluate interventions for supporting women and partners living with this chronic and often debilitating condition.”

All Endometriosis Patients Could Benefit From Emotional Support

Many endometriosis patients with fertility issues express no desire to have children. Therefore, some women are unaffected by infertility that might arise from endo. However, it’s essential to keep these women in mind because their feelings matter, too. Perhaps some did not want to have kids now but were hoping to someday in the future? Or maybe they are just not with the right person to have children with them? 

Whatever the case may be, it’s significant that healthcare providers do not overlook a patient’s emotional needs, even if they say it doesn’t bother them if they cannot have kids. Perhaps a person in this situation may not need as intense emotional support, but they should see a mental health provider have a chance to talk about these feelings and think them through. Some interventions can help one conceive or be ready to conceive even with an endometriosis diagnosis. However, it’s significant to remember that the further the disease has progressed, the more complex it is to treat it to regain fertility. Therefore, when you are unsure if you want to have a baby, it’s still wise to have all the lesions removed as soon as you can and conduct proper follow-up.

Seeking a Mental Health Provider Experienced With Endometriosis

Endometriosis is a complex and often misunderstood disease. Therefore, women who battle this condition daily, especially those with fertility issues, require a mental health professional familiar with this inflammatory disorder. 

Endometriosis encompasses many domains of a patient’s life, and fertility issues are not the only things that impact women’s emotional health. When seeking out a professional, it’s critical to find someone familiar with the disease and its emotional impact on patients.

Importance of Friends and Family

In addition to adding a robust mental health provider to your team, it’s also essential that you seek support from your loved ones. Please encourage them to attend appointments with you to have a better understanding of the condition. When the people closest to you can comprehend the emotional roller-coaster accompanying infertility, they will be better prepared to support you emotionally. 

When a patient receives a diagnosis such as endometriosis, pain management, and other care items often become the priority. Therefore, it can be easy to overlook the emotional aspect of this condition, especially in someone with fertility issues. This is why it’s essential to do your research and find an experienced endometriosis expert to head up your team.

Do You Have Fertility Issues Caused By Endometriosis?

We want to hear from you. What are your thoughts on the emotional challenges? Do you have a solid mental health provider on your team? Leave your responses in the comments below.

3 years ago Endometriosis , Endometriosis Education

Endometriosis outside of the pelvis

Endometriosis is not confined to the pelvis. Endometriosis lesions have been found in multiple other areas in the body, including some strange places- like the nasal passage or the stomach wall (Mignemi et al., 2012; Mohamed et al., 2016). Andres et al. (2020) performed a systematic review of case studies of extrapelvic endometriosis and they found case reports of: 273 abdomen, 628 thoracic, 6 central nerve system, 12 extrapelvic muscle or nerve, and 1 nasal endometriosis. While this is not a comprehensive list of all the places endometriosis has been found, it does show that it can be found in many different places outside of the pelvis.

With abdominal endometriosis, if symptoms were noted, they “included a palpable mass (99%), cyclic pain (71%) and cyclic bleeding (48%)” (Andres et al., 2020). For thoracic endometriosis, symptoms included pain associated with menses, collapsed lung (pneumothorax), and blood in the sputum (hemoptysis) (Andres et al., 2020). The lesions in the thoracic cavity “favored the right side (80%)” (Andres et al., 2020). Symptoms can often be subtle and can be associated with other pathologies that may need to be ruled out as well.

For more information: 

• Locations of endometriosis: https://icarebetter.com/locations-of-endometriosis/  
• Weird places endometriosis has been found: https://icarebetter.com/weird-places-endometriosis-has-been-found/  
• Symptoms based on location of endometriosis: https://icarebetter.com/symptoms-based-on-endometriosis-locations/  
• Thoracic endometriosis: https://icarebetter.com/thoracic-endometriosis/  
• Urinary system: https://icarebetter.com/urinary-system-bladder-ureters-and-kidney/  
• Bowel/GI endometriosis: https://icarebetter.com/bowel-gi-endometriosis/  

References 

Andres, M. P., Arcoverde, F. V., Souza, C. C., Fernandes, L. F. C., Abrão, M. S., & Kho, R. M. (2020). Extrapelvic endometriosis: a systematic review. Journal of minimally invasive gynecology, 27(2), 373-389. Retrieved from  https://www.sciencedirect.com/science/article/pii/S1553465019312567  

Mignemi, G., Facchini, C., Raimondo, D., Montanari, G., Ferrini, G., & Seracchioli, R. (2012). A case report of nasal endometriosis in a patient affected by Behcet’s disease. Journal of minimally invasive gynecology, 19(4), 514-516. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465012001082  

Mohamed, A. A., Selim, Y. A., Arif, M. A., & Albroumi, S. A. (2016). Gastric wall endometriosis in a postmenopausal woman. The Egyptian Journal of Radiology and Nuclear Medicine, 47(4), 1783-1786. Retrieved from https://doi.org/10.1016/j.ejrnm.2016.08.005 

3 years ago Endometriosis , Endometriosis Education

Chronic fatigue syndrome and endometriosis

While no strong studies have been performed on endometriosis and chronic fatigue syndrome (also called myalgic encephalomyelitis)(CFS/ME), CFS/ME has been found with some frequency in those with endometriosis. This doesn’t mean that one causes the other. Rather it indicates that they can often be found present together, like we see with migraines and endometriosis. It is good to consider that there may be some overlapping symptoms and that more than one etiology may be present.  

Boneva et al. (2019) reports that: 

“Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME) or ME/CFS, is a serious chronic condition characterized by significant impairment in activity levels due to profound fatigue, worsening symptoms after seemingly minimal physical, or mental exertion, sleep problems, as well as difficulties with memory and concentration or orthostatic intolerance (1). Patients with ME/CFS also frequently experience chronic joint and muscle pain. Conditions with chronic pain as a major symptom, such as ME/CFS, endometriosis (EM), fibromyalgia, interstitial cystitis/bladder pain, irritable bowel syndrome, temporomandibular joint syndrome, and chronic migraines, have been termed chronic overlapping pain conditions. There is evidence that persons with one of these conditions are more likely to have another one as a co-morbidity…. We found more than a third of women with CFS reported endometriosis as a comorbid condition.”

(Boneva et al., 2019) 

This comorbidity, as well as other chronic pain conditions (interstitial cystitis, irritable bowel syndrome, chronic headaches, chronic low back pain, vulvodynia, fibromyalgia, temporomandibular joint disease, and chronic fatigue syndrome) has been noted in adolescents as well (Smorgick et al., 2013).  

References  

Boneva, R. S., Lin, J. M. S., Wieser, F., Nater, U. M., Ditzen, B., Taylor, R. N., & Unger, E. R. (2019). Endometriosis as a comorbid condition in chronic fatigue syndrome (CFS): secondary analysis of data from a CFS case-control study. Frontiers in pediatrics, 7, 195. Retrieved from https://doi.org/10.3389/fped.2019.00195  

Smorgick, N., Marsh, C. A., As-Sanie, S., Smith, Y. R., & Quint, E. H. (2013). Prevalence of pain syndromes, mood conditions, and asthma in adolescents and young women with endometriosis. Journal of pediatric and adolescent gynecology, 26(3), 171-175. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S1083318813000028  

3 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility 1 comment

Endometriosis Fertility Treatment: Natural, Medical, & Surgical Options

Natural, Medical & Surgical Treatment of Endometriosis Infertility 

Endometriosis (endo) is a common condition that affects up to 10% of all women globally. But most people do not realize this condition’s impact on a significant proportion of women. Endometriosis and pregnancy complications are a common coincidence. Up to 50% of women with infertility have endo.

Endometriosis and pregnancy can be problematic for patients. And sometimes, endometriosis treatments are needed to conceive. Keep reading to learn more about fertility options for women with endo.

Read More: How Does Endometriosis Cause Infertility?

Lack of Evidence-Based Research Stalls Treatment Options

Endometriosis is sometimes like the elephant in the room that no one wants to discuss or do enough research. However, that needs to change because endometriosis is often a disabling condition, and people should know about it. Not only does this condition impact the patient’s quality of life, but it also affects the potential for some of these patients to have a family. This situation can affect a marriage, other family members, a partner, etc.

Options for treating women with endometriosis and pregnancy issues can be natural, medical, surgical, or surgery-assisted. Let’s review the latest fertility treatments and courses of action for women affected by endometriosis. First, we will briefly discuss how endometriosis and pregnancy are related. 

Can You Get Pregnant with Endometriosis?

Natural

Getting pregnant with endometriosis is not always easy, but it’s a reality for most patients who have the condition and want to conceive. It’s important to emphasize that the body can and still does get pregnant. There are things such as an endometriosis diet that might help. Let’s look at the good numbers. Up to 70%, according to some studies, of women with mild to moderate endometriosis will become pregnant without medical intervention.

Medically-Assisted

Statistics show that about 75% of women with severe endometriosis (stage III/IV) will conceive if they desire. Two-thirds of those pregnancies occurred naturally, and one-third with the help of the endometriosis fertility treatment.

If you have endometriosis and are having troubles getting or maintaining a pregnancy, and you wish to carry full-term, here are some medical options that may interest you:

• Freeze some eggs: Your ovarian reserve of eggs can decline due to endometriosis. Therefore, some endo specialists recommend preserving your eggs in case you wish to conceive later. Just note that this can be an expensive option.
• Superovulation and intrauterine insemination (SO-IUI): If you have normal fallopian tubes, mild endometriosis, and a partner with healthy sperm, this might be the best choice for you.
• Fertility medications: Doctors can prescribe medications to produce up to two or three mature eggs. There are also progestin injections that are often used to help fertility issues. 
• Frequent ultrasounds: If a person is trying to get pregnant, they may go in for frequent ultrasounds to identify when the eggs are most mature. At that time, a doctor can insert the partner’s collected sperm.
• In-Vitro Fertilization (IVF): This treatment involves the extraction of the egg and sperm. The egg is fertilized outside the body and then implanted into the uterus.

Endometriosis Surgery For Infertility

Many women with endometriosis do become pregnant without medical assistance. However, studies suggest that endometriosis surgery does help a woman to become pregnant without difficulty. 

• Removal of endometriosis tissue: Evidence shows that pregnancy rates improve if the endometriosis tissues are removed surgically.
• Removal of tissue or large endometriosis cysts: Large cysts and tissue accumulation can contribute to infertility. Removing these can help the patient conceive.
• Routine follow-up: Women with endometriosis often have cysts that relapse after treatment. It is crucial to complete follow-up visits and possibly have complementary surgeries down the road.

How Your Stage of Endometriosis Impacts Fertility

A diagnosis of endometriosis is a heavy thing to take in, primarily since it’s known to impact a woman’s reproductive organs. Studies have shown that the extent of endometriosis present during laparoscopy correlates with fertility.

Do You Have Concerns About Endometriosis and Fertility?

We want to hear from you. What is your biggest concern about the fertility impact of endometriosis? Or does it concern you at all? Leave your answers in the comments below. If you need medical attention that is not emergent, be sure to find a vetted endometriosis specialist who is familiar with the disease and modern treatments.

3 years ago Endometriosis , Endometriosis Education

Killer cramps

What’s behind those killer cramps in endometriosis? A mixture of nociceptive, inflammatory, and neuropathic factors that combine to create pain and other symptoms. Endometriosis is more than killer cramps. The factors associated with inflammation and nerves, such as prostaglandins, can cause other symptoms as well (Koike et al., 1992). For example, prostaglandins, such as seen in endometriosis, can also contribute to pain associated with irritable bowel syndrome (Grabauskas et al., 2020). Or chronic inflammation can cause a reduction in energy on the cellular level leading to fatigue (Lacourt et al., 2018). Morotti et al. (2014) notes that “endometriosis-associated pain is as complex as the disease itself” and that “no correlation exists between the extent of endometriosis seen at laparoscopy and the degree of pain symptoms.” There have been several studies demonstrating an increase in sensory nerve fibers in endometriotic lesions as well as inflammatory factors that contribute to pain (Morotti et al., 2014).  

Understanding and Finding Relief from Endometriosis Cramps

Find out more about pain and endometriosis here: https://icarebetter.com/what-influences-pain-levels/

References 

Grabauskas, G., Wu, X., Gao, J., Li, J. Y., Turgeon, D. K., & Owyang, C. (2020). Prostaglandin E2, produced by mast cells in colon tissues from patients with irritable bowel syndrome, contributes to visceral hypersensitivity in mice. Gastroenterology, 158(8), 2195-2207. Retrieved from  https://www.sciencedirect.com/science/article/pii/S0016508520302328 

Koike, H., Egawa, H., Ohtsuka, T., Yamaguchi, M., Ikenoue, T., & Mori, N. (1992). Correlation between dysmenorrheic severity and prostaglandin production in women with endometriosis. Prostaglandins, leukotrienes and essential fatty acids, 46(2), 133-137. Retrieved from https://doi.org/10.1016/0952-3278(92)90219-9  

Lacourt, T. E., Vichaya, E. G., Chiu, G. S., Dantzer, R., & Heijnen, C. J. (2018). The high costs of low-grade inflammation: persistent fatigue as a consequence of reduced cellular-energy availability and non-adaptive energy expenditure. Frontiers in behavioral neuroscience, 12, 78. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932180/#:~:text=We%20propose%20that%20chronic%20low,rapid%20generation%20of%20cellular%20energy. 

Morotti, M., Vincent, K., Brawn, J., Zondervan, K. T., & Becker, C. M. (2014). Peripheral changes in endometriosis-associated pain. Human reproduction update, 20(5), 717-736. Retrieved from https://academic.oup.com/humupd/article/20/5/717/2952641?login=true  

3 years ago Endometriosis , Endometriosis Education

Thankful for resources on endometriosis

It was Thanksgiving week in the USA- a time to take a moment to focus our attention on what we are grateful to have. While there is much to be learned about endometriosis and the best treatment, I am grateful for the researchers, healthcare providers, and advocates who are working to better the understanding and care of endometriosis. There are researchers out there trying to decipher the way endometriosis originates, functions, and affects people in order to lead to better treatment. There are healthcare professionals out there such as surgeons refining their skill in removing endometriosis as well as teaching others how to do so, therapists who help with the effects that endometriosis has on our bodies and minds, and advocates who are working to bring attention to this disease. There are too many to list them all but visit our Articles and Website links page as well as the links on Podcasts and Videos to see just a small sampling of those out there working to better endometriosis care.

3 years ago Endometriosis , Endometriosis Education

Social gatherings and food choices

As we approach a season of many different holidays, our thoughts often turn to food. There is usually food at most any holiday gathering- which can be both a pleasure and a grief for those dealing with a chronic illness. Those with a history of endometriosis can often have gastrointestinal symptoms that are exacerbated by certain foods or patterns of eating. Those with endometriosis may also have other conditions with specific dietary guidelines (such as interstitial cystitis or migraines).  

We have noted before that while there is no specific diet overall for endometriosis, nutrition can improve symptoms as well as overall health and well-being. Nutrition should be individualized to your specific needs. As we approach the holidays, you really have to know your body. For example, one person may tolerate gluten in small portions, while another cannot tolerate even an occasional cheat. Knowing your body and practicing mindful eating can lessen the stress and enable you to more fully enjoy gatherings. Because food is not only essential to our basic survival, it is often at the center of community gatherings and part of the pleasure of living.  

Some preplanning to accommodate dietary choices can minimize the interference of enjoying social gatherings. It may be bringing a dish that you know you can eat, having a small meal beforehand so you won’t be as tempted to indulge in things that don’t agree with you, or having an artful dodge if someone comments on what you are or are not eating (or better yet- as Toby Amidor put it- “don’t be afraid to politely say, ‘no, thank you’ without giving a long explanation…you don’t owe an explanation to anyone — so don’t feel obligated”). Sometimes dietary choices can feel like a punishment- a series of avoiding things. Focus on what you CAN have and enjoy. From time to time we have to Jedi mind trick ourselves by knowing that we can eat whatever we want, but we are choosing something better for ourselves (because you are worth it!). And if you throw caution to the wind and indulge, then don’t beat yourself up over it. Next time you eat, you’ll eat something better for yourself. If you are still in the process of finding what food choices work best for your body, then here are a few things to consider: 

Diet and Nutrition: https://icarebetter.com/diet-and/  

Is There an Endo Diet?: https://icarebetter.com/fast-facts-is-there-an-endo-diet/  

Curcumin: https://icarebetter.com/curcumins-effect-on-endometriosis/  

Mediterranean and FODMAP: https://icarebetter.com/endo-diet-mediterranean-or-fodmap-for-the-win/  

Celiac Disease and Endometriosis: https://icarebetter.com/celiac-disease-and-endometriosis/  

Interstitial cystitis: https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/

Reference

Amidor, T. (2018). How to Navigate a Holiday Party With Dietary Restrictions. Retrieved from https://www.foodnetwork.com/healthyeats/holidays/2018/12/how-to-navigate-a-holiday-party-with-dietary-restrictions

3 years ago Endometriosis , Endometriosis Education

Wait a minute- is that true?

We frequently get questions about information that is assumed to be true in most cases of endometriosis. When evaluating information about endometriosis, it is good to keep in mind that long accepted beliefs may not necessarily be absolute. Here are a few often touted beliefs about endometriosis and why they may not necessarily be accurate:

1. “Hysterectomy is the definitive treatment for endometriosis.” Or variations of this theme: “Removing your uterus and/or ovaries will cure you”. Many people with endometriosis also experience problems with their uterus or ovaries (such as adenomyosis, fibroids, and other conditions that can contribute to chronic pelvic pain) that could benefit from a hysterectomy. However, using a hysterectomy to treat endometriosis alone may still leave you susceptible to continued symptoms and other problems from remaining lesions [one example: hydronephrosis from endometriosis left around ureters (Bawin, Troisfontaines, & Nisolle, 2013)].

• “Persistent or recurrent endometriosis after a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH BSO) has been reported by several investigators.” (Hasty & Murphy, 1995)
• “According to literature, there are no randomized controlled trials for hysterectomy as the treatment for endometriosis.” (Bellelis, 2019)
• “Endometriosis which is not removed at the time of hysterectomy and bilateral salpingo‐oophorectomy may represent after a variable time interval with many or all of the symptoms which prompted the original surgery. This tissue can be highly active and responsive to exogenous hormonal stimulation. In the presence of troublesome symptoms, excision of residual endometriosis may be effective and should be considered.” (Clayton et al., 1999)
• “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient’s age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.” (Rizk et al., 2014)
• “We found that among women undergoing hysterectomy, endometriosis was associated with a higher degree of prescription of analgesics. In the endometriosis group the prescription of analgesic, psychoactive and neuroactive drugs did not decrease significantly after surgery. In fact, the prescription of psychoactive and neuroactive drugs increased.” (Brunes et al., 2020)
• “Studies have showed that the growth and progression of endometriosis continue even in ovariectomized animals.” (Khan et al., 2013)
• Read more here: “Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief”: http://endopaedia.info/treatment21.html

2. “All of your endo will die off in menopause.” Whether natural, surgically induced, or medically induced, there are cases of endometriosis continuing after menopause. Endometriosis lesions are capable of producing their own estrogen (Huhtinen, Ståhle, Perheentupa, & Poutanen, 2012). Another spin off is that “you are too old to have endometriosis”. Inceboz (2015) reports cases of endometriosis in the 8^th and 9^th decade of life. While some people’s symptoms do improve, it is not a sure thing.

• “As an estrogen-dependent disease, endometriosis was thought to become less active or regress with the onset of the menopause. However, based on some new data, we are discovering that this pathology can emerge or reappear at this period of life.” (Marie-Scemama, Even, De La Joliniere, & Ayoubi, 2019)
• “Endometriotic lesions remained biologically active, with proliferative activity and preserved hormonal responsiveness, even in the lower estrogenic environment in the postmenopause.” (Inceboz, 2015)
• “True prevalence of postmenopausal endometriosis is unknown. There have been some reports in the literature on the prevalence of endometriosis in postmenopausal women [5–8]. According to these studies, the prevalence of postmenopausal endometriosis is 2–5%…. Interestingly, nine of the cases were at the upper extreme of the age groups (eight were in 80–85 years and a case in 90–95 years).” (Inceboz, 2015)
• “Occurrence or progression of postmenopausal endometriosis lesions could be related to extra-ovarian production of estrogen by endometriosis lesions and adipose tissue, which becomes the major estrogen-producing tissue after menopause. Postmenopausal women with symptomatic endometriosis should be managed surgically…” (Streuli, Gaitzsch, Wenger, & Petignat, 2017)

3. “Getting pregnant will help.” However, endometriosis can cause infertility…..

• “Although gynaecologists often advise women that pregnancy has a beneficial effect on endometriosis, few studies confirm this association. Owing to the paucity and limited quality of the data, we can conclude that the behaviour of endometriotic lesions during pregnancy seems to be variable, ranging from complete disappearance to increased growth. Despite some of the early authors questioning a positive effect (McArthur and Ulfelder, 1965; Schenken et al., 1987), the idea to recommend pregnancy as part of the treatment strategy for endometriosis persists to this day (Rubegni et al., 2003; Coccia et al., 2012; Benaglia et al., 2013). The few favourable early observations and very limited options to treat endometriosis seem to have generated the myth of a beneficial effect of pregnancy and initiation of the so-called ‘pseudopregnancy’ therapy. Endometriosis is associated with infertility, and a lower prevalence of endometriosis in pregnant than in non-pregnant women may have led clinicians and scientists to the view that pregnancy has a positive effect against the disease.” (Leeners, Damaso, Ochsenbein-Kölble, & Farquhar, 2018)

4. “Mild endometriosis won’t affect fertility.” So-called “mild” or “minimal” endometriosis can affect the ability to conceive (Carvalho et al., 2012). Also, “mild” or “minimal” endometriosis can still produce significant symptoms (see Pain with Minimal Endometriosis).

• “The purpose of this systematic review is to present studies regarding the association between pregnancy rates and the presence of early stages of endometriosis. Studies regarding infertility, minimal (stage I, American Society of Reproductive Medicine [ASRM]) and mild (stage II, ASRM) endometriosis were identified…Earlier stages of endometriosis play a critical role in infertility, and most likely negatively impact pregnancy outcomes.” (Carvalho, Below, Abrão, & Agarwal, 2012)

5. “Hormonal suppressants will clean up the rest of the endometriosis.” Hormonal medications may be useful for other problems but cannot be relied upon to “clean up” or prevent recurrence of endometriosis. Surgeons who perform endometriosis surgery exclusively (excision) versus a general gynecological/obstetric practice have more chance to develop skill in being able to identify and being able to remove ALL endometriosis lesions (Khazali, 2020) (see Why Excision is Recommended).

• “Endometriotic stromal cells resist the antiproliferative effect of GnRH agonists and antagonists.” (Taniguchi et al., 2013)
• “This case demonstrates the obvious progression of deep rectal endometriosis despite 4 years of continuous hormonal therapy.” (Millochau et al., 2016)
• “Few studies of medical therapies for endometriosis report outcomes that are relevant to patients, and many women gain only limited or intermittent benefit from treatment.” (Becker et al., 2017)
• “There is currently no evidence to support any treatment being recommended to prevent the recurrence of endometriosis following conservative surgery.” (Sanghera et al., 2016)
• “A systematic review found that post-surgical hormonal treatment of endometriosis compared with surgery alone has no benefit for the outcomes of pain or pregnancy rates, but a significant improvement in disease recurrence in terms of decrease in rAFS score (mean = −2.30; 95% CI = −4.02 to −0.58) (Yap et al., 2004). Overall, however, it found that there is insufficient evidence to conclude that hormonal suppression in association with surgery for endometriosis is associated with a significant benefit with regard to any of the outcomes identified….Moreover, even if post-operation medication proves to be effective in reducing recurrence risk, it is questionable that ‘all’ patients would require such medication in order to reduce the risk of recurrence.” (Guo, 2009)
• “Many studies have investigated factors determining the recurrence of endometrioma and pain after surgery [16, 19, 20]…. Regardless of the mechanism, the present and previous studies suggest that postoperative medical treatment is known to delay but not completely prevent recurrence…. In our study, we also failed to observe a benefit for postoperative medication in preventing endometrioma and/or endometriosis-related pain recurrence.” (Li et al., 2019)
• “Furthermore, all currently approved drugs are suppressive and not curative. For example, creating a hormonal balance in patients by taking oral contraceptives, such as progestins and gonadotropin‐releasing hormone agonists, may only relieve the associated inflammatory status and pain symptoms.” (Che et al., 2015)

6. “If I respond to hormonal therapy then that means I have endometriosis.” Response to hormonal treatment, whether positive or negative, does NOT diagnose endometriosis or exclude it.

• “Relief of chronic pelvic pain symptoms, or lack of response, with preoperative hormonal therapy is not an accurate predictor of presence or absence of histologically confirmed endometriosis at laparoscopy.” (Jenkins, Liu, & White, 2008)
• “The definitive diagnosis of endometriosis can only be made by histopathology showing endometrial glands and stroma with varying degree of inflammation and fibrosis.” (Rafique & Decherney, 2017)

7. “My scans didn’t show anything so I was told I didn’t have endometriosis.” Transvaginal ultrasounds and magnetic resonance imaging are becoming more sensitive in the hands of those with experience and can rule in instances of endometriosis (especially deep infiltrating endometriosis and endometriomas). However, it cannot rule out endometriosis. (See But All Your Tests Are Negative)

• “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
• “Ultrasonography and magnetic resonance imaging can be used to diagnose ovarian endometriotic cysts and deep infiltrating endometriosis; but their performance is poor in the diagnosis of initial stages of endometriosis.” (Ferrero, 2019)

8. “None of my tests showed I had endometriosis.” Other tests, in addition to scans, cannot adequately rule out endometriosis with consistency or certainty.

• “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
• “CA‐125 and other serum markers (such as CA 19‐9, serum protein PP14, interleukins, and angiogenetic factors) have been measured in women with endometriosis but they are not reliable for the diagnosis of the disease.” (Ferrero, 2019)
• “The majority of studies focused on a panel of biomarkers, rather than a single biomarker and were unable to identify a single biomolecule or a panel of biomarkers with sufficient specificity and sensitivity in endometriosis. Conclusion: Noninvasive biomarkers, proteomics, genomics, and miRNA microarray may aid the diagnosis, but further research on larger datasets along with a better understanding of the pathophysiologic mechanisms are needed.” (Anastasiu et al., 2020)

9. “I was told it was IBS.”

• “Endometriosis can be commonly misdiagnosed as IBS [22] due to overlap in common symptoms and perhaps mechanisms of disease progression involving aberrant activation of inflammatory cascades.” (Torres-Reverón, Rivera-Lopez, Flores, & Appleyard, 2018)

10. “You are too young to have endometriosis.” Or “you are too young to have adenomyosis or DIE.” In those adolescents with chronic pelvic pain, endometriosis is a common discovery. Deep infiltrating endometriosis (DIE) can be found in teens.

• “Endometriosis is a common finding in adolescents who have a history of chronic pelvic pain or dysmenorrhoea resistant to medical treatment, however the exact prevalence is unknown. Both early/superficial and advanced forms of endometriosis are found in adolescents, including ovarian endometriomas and deep endometriotic lesions. Whilst spontaneous resolution is possible, recent reports suggest that adolescent endometriosis can be a progressive condition, at least in a significant proportion of cases. It is also claimed that deep endometriosis has its roots in adolescence.” (Sarıdoğan, 2017)
• “The majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis (up to 80%). Laparoscopy with biopsy is the only way to diagnose endometriosis in the adolescent population, and depends on recognition of atypical manifestations of the disease.” (Yeung Jr, Gupta, & Gieg, 2017)
• “Adolescent endometriosis is not a rare condition.” (Audebert et al., 2015)
• “An increasing body of literature suggests that advanced-stage endometriosis (revised scoring system of the American Society for Reproductive Medicine Stage III or IV) and deeply invasive endometriosis are relatively common in adolescents.” (Dowlut-McElroy & Strickland, 2017)
• “In all, 648 of 1011 (64%) adolescents undergoing laparoscopy were found to have endometriosis. The prevalence ranged from 25% to 100%, with a mean prevalence of 64%. Thirteen studies including 381 participants categorized disease severity using the revised American Society of Reproductive Medicine classification. Among these, 53% of participants (201/381) had stage I, 28% (105/381) had stage II, 20% (76/381) had stage III, and 13% (49/381) had stage IV disease. Conclusions: The prevalence of endometriosis among adolescents with pelvic pain symptoms is high. Endometriosis is treatable, and prompt recognition will help to ensure that adolescents are signposted earlier to appropriate specialists. The management of adolescents with suspected endometriosis should be consistent with best practice guidance. Despite recommendations to increase the awareness and knowledge of endometriosis in adolescence, minimal research has followed.” (Hirsch et al., 2020)

11. “My endo keeps coming back so there’s nothing I can do.” It can be difficult to ascertain if endometriosis truly reappeared or was all of it not removed previously (See Is There Microscopic or Occult Endometriosis). With repetitive surgeries or with endometriosis in certain locations (such as ureters, bowel, diaphragm, etc.), seeking someone who exclusively does surgery for endometriosis and its related conditions can be beneficial (Khazali, 2020). Often a team approach, utilizing other specialties as dictated by the individual’s case, is valuable (Khazali, 2020). (See Why Excision is Recommended) Recurrence can happen, more often in ovarian endometriosis, stage III and IV, and in those who were younger (Selçuk & Bozdağ, 2013). When looking at recurrence rates, it ranges from 6% to 67% (Selçuk & Bozdağ, 2013)! This wide range is due to many factors when evaluating studies- most studies do not differentiate the type of surgery, the type of surgeon (specialty center versus general gynecological practice), or the criteria for recurrence (was it reemergence of symptoms or repeat surgery) (Selçuk & Bozdağ, 2013). There are many related conditions that appear with endometriosis that can cause similar symptoms that should also be addressed (See Related Conditions).

• “A multidisciplinary team approach (eg, gynecologic endoscopist, colorectal surgeon, urologist) can reduce risk and facilitate effective treatment.¹⁹ Likewise, advanced surgical skills and anatomical knowledge are required for deep resection and should be performed primarily in tertiary referral centers. Careful preoperative planning, informed consent, and meticulous adherence to “best practice” technique is requisite to reduce morbidity and ensure effective management of potential complications.⁹⁰Although excisional biopsy and resection offers a higher success rate in treating the disease, surgical excision also requires a higher level of surgical skill. As a result, many patients receive incomplete treatment, which in turn may lead to persistent symptoms and recurrent disease. It should be noted that many women who have undergone repeated surgeries and had a hysterectomy still suffer.⁸⁶ The need to improve surgical approach and/or engage in timely referrals is unquestionable. Surgery to debulk and excise endometriosis may be “more difficult than for cancer”. Complete removal of implants may be difficult due to variation in appearance and visibility. True surgical resection and treatment poses formidable challenges, even the hands of experienced clinicians. In particular, deep disease is often difficult to treat due to close proximity of and common infiltration in and around bowel, ureters, and uterine artery.¹⁸ Potential adenomyosis should also be included in the preoperative workup, as it can influence postoperative improvement patterns of pain and symptoms associated with endometriosis.” (Fishcer et al., 2013)
• “All of the studies were conducted by expert laparoscopic surgeons, whose results are unlikely to be reproduced by the generalist surgeon…. Based on the studies performed to date, it is the author’s opinion that laparoscopic excision of endometriosis, when technically feasible, should be the standard of care. First, whereas visual diagnosis of endometriosis is correct in only 57% to 72% of cases, excisional surgery yields specimens for histologic confirmation—and identifies endometriosis in 25% of “atypical” pelvic lesions as well.¹⁸ The availability of such specimens would prevent unnecessary treatment and ensure more reproducible research findings. Excision should also reduce the incidence of persistent disease secondary to inadequate “tip of the iceberg” destruction, removing both invasive and microscopic endometriosis to provide the best possible symptom relief.” (Jenkins, 2009)
• “Laparoscopic identification of superficial endometriosis implants represents a challenge for the gynecologic surgeon. Endometriosis lesions may present in a wide spectrum of appearance according to a “lifecycle” of the implants. The lesions can be flat or vesicular. They can have any combination of color typically red, back/brown and white. Active “red” lesions, large endometriomas, deep infiltrating nodules, and typical “powder-burn” lesions are easier to identify than “white” old fibrotic lesions. The endometriotic implants are hypervascular. The diagnostic accuracy at laparoscopy is also affected by the experience of the surgeon and the laparoscopic equipment [16].” (Jose, Fausto, & Antonio, 2018)

12. “It’s all in your head.” When no visible cause is identified or usual treatments fail, the blame often gets shifted to the individual- that they are exaggerating or are not strong enough to deal with it or that they should be able to just live it. Sadly, one study (Rowe & Quinlivan, 2020) found that often a women’s fertility rather than quality of life was the driver for getting further care.

• “Women’s symptoms are frequently trivialized or disbelieved, consequently attributing pathology to the woman rather than the disease, which is deeply distressing [11]. These responses are underpinned by essentialist notions that pain is just part of being a woman. Lack of legitimation results in victim blaming, reinforces gendered stereotypes about feminine weakness, intensifies women’s distress and averts prompt action [10]. Similar essentialist ideas underlie observations that framing endometriosis as a fertility problem is more likely to result in health care intervention than when it is framed as symptom management. In one qualitative study, women described fertility as the entry point for discussion about endometriosis, despite having sought health care for symptoms over many years [12].” (Rowe & Quinlivan, 2020)
• “Endometriosis impairs the quality of life due to chronic and severe acyclic pelvic pain with associated dysmenorrhea, dyspareunia, gastrointestinal problems, fatigue and headaches….women with endometriosis are often surrounded by taboos, myths, scourge of subfertility, pain of disease and missed diagnosis and treatment [22]. Delays in the diagnosis and initiation of treatment for the disease in fact occur due to these counterproductive factors operative both at the individual patient level and at the medical level resulting in frustration and loss of valuable time in the prime phase of life of the patient….Delays also occur at the medical level due to the delay in referral from primary to secondary care, pain normalized by clinicians, intermittent hormonal suppression of symptoms, use of non-discriminating investigations and insufficiency in awareness and lack of constructive support among a subset of healthcare providers [23,24,25,37,38]. In this connection, it is noteworthy that delay in diagnosis is longer for women reporting with pelvic pain compared with those reporting with infertility, which is suggestive of the fact that there is a higher level of reluctance surrounding endometriosis-associated pain symptoms….” (Ghosh et al., 2020)
• “Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals…. Conclusions: Implications for health professionals are discussed, including the need for earlier diagnosis and taking women’s symptoms more seriously at referral…” (Grogan, Turley, & Cole, 2018)
• “Despite its high prevalence and cost, endometriosis remains underfunded and underresearched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options. Due in part to the societal normalization of women’s pain and stigma around menstrual issues…” (As-Sanie et al., 2019)

References

Anastasiu, C. V., Moga, M. A., Elena Neculau, A., Bălan, A., Scârneciu, I., Dragomir, R. M., … & Chicea, L. M. (2020). Biomarkers for the Noninvasive Diagnosis of Endometriosis: State of the Art and Future Perspectives. International Journal of Molecular Sciences, 21(5), 1750. Retrieved from https://www.mdpi.com/1422-0067/21/5/1750

As-Sanie, S., Black, R., Giudice, L. C., Valbrun, T. G., Gupta, J., Jones, B., … & Taylor, R. N. (2019). Assessing research gaps and unmet needs in endometriosis. American Journal of Obstetrics and Gynecology, 221(2), 86-94.  Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0002937819303850

Audebert, A., Lecointre, L., Afors, K., Koch, A., Wattiez, A., & Akladios, C. (2015). Adolescent endometriosis: report of a series of 55 cases with a focus on clinical presentation and long-term issues. Journal of minimally invasive gynecology, 22(5), 834-840. Retrieved from https://pubmed.ncbi.nlm.nih.gov/25850071/

Bawin, I., Troisfontaines, E., & Nisolle, M. (2013). Clinical case of the month. Rare case of ureteral endometriosis nine years after hysterectomy. Revue medicale de Liege, 68(7-8), 378-381. Retrieved from https://europepmc.org/article/med/24053093

Becker, C. M., Gattrell, W. T., Gude, K., & Singh, S. S. (2017). Reevaluating response and failure of medical treatment of endometriosis: a systematic review. Fertility and sterility, 108(1), 125-136.  Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0015028217303606

Bellelis, P. (2019). 2607 Hysterectomy in Women with Endometriosis. Journal of Minimally Invasive Gynecology, 26(7), S177. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465019307393

Brunes, M., Altman, D., Pålsson, M., Söderberg, M. W., & Ek, M. (2020). Impact of hysterectomy on analgesic, psychoactive and neuroactive drug use in women with endometriosis: Nationwide cohort study. BJOG: An International Journal of Obstetrics & Gynaecology. Retreived from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.16469

Carvalho, L. F. P., Below, A., Abrão, M. S., & Agarwal, A. (2012). Minimal and mild endometriosis negatively impact on pregnancy outcome. Revista da Associação Médica Brasileira, 58(5), 607-614. Retrieved from https://www.sciencedirect.com/science/article/pii/S0104423012702579

Che, X. H., Chen, Y. C., Chen, C. L., Ye, X. L., & Zhu, H. (2015). Non‐hormonal targets underlying endometriosis: A focus on molecular mechanisms. Molecular Reproduction and Development, 82(6), 410-431.  Retrieved from https://onlinelibrary.wiley.com/doi/full/10.1002/mrd.22493

Clayton, R. D., Hawe, J. A., Love, J. C., Wilkinson, N., & Garry, R. (1999). Recurrent pain after hysterectomy and bilateral salpingo‐oophorectomy for endometriosis: evaluation of laparoscopic excision of residual endometriosis. BJOG: An International Journal of Obstetrics & Gynaecology, 106(7), 740-744. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.1999.tb08377.x?fbclid=IwAR04aFoLsukqsYutNPNXtJNZpKLNEJbgOOon334NW8D7wvwzZMWaS2YaZts

Dowlut-McElroy, T., & Strickland, J. L. (2017). Endometriosis in adolescents. Current Opinion in Obstetrics and Gynecology, 29(5), 306-309. Retrieved from https://journals.lww.com/co-obgyn/Abstract/2017/10000/Endometriosis_in_adolescents.6.aspx

Ferrero, S. (2019). Proteomics in the diagnosis of endometriosis: opportunities and challenges. PROTEOMICS–Clinical Applications, 13(3), 1800183. Retrieved from https://onlinelibrary.wiley.com/doi/abs/10.1002/prca.201800183

Fischer, J., Giudice, L. C., Milad, M., Mosbrucker, C., & Sinervo, K. R. (2013). Diagnosis & management of endometriosis: pathophysiology to practice. APGO Educational Series on Women’s Health Issues. Retrieved from https://www.ed.ac.uk/files/atoms/files/diagnosis_and_management_of_endometriosis_booklet.pdf

Ghosh, D., Filaretova, L., Bharti, J., Roy, K. K., Sharma, J. B., & Sengupta, J. (2020). Pathophysiological Basis of Endometriosis-Linked Stress Associated with Pain and Infertility: A Conceptual Review. Reproductive Medicine, 1(1), 32-61. Retrieved from https://www.mdpi.com/2673-3897/1/1/4/htm

Grogan, S., Turley, E., & Cole, J. (2018). ‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis. Psychology & health, 33(11), 1364-1378.  Retrieved from https://www.tandfonline.com/doi/abs/10.1080/08870446.2018.1496252

Guo, S. W. (2009). Recurrence of endometriosis and its control. Human reproduction update, 15(4), 441-461. Retrieved from http://humupd.oxfordjournals.org/content/15/4/441.full

Hasty, L. A., & Murphy, A. A. (1995). Management of recurrent endometriosis after hysterectomy and bilateral salpingo-oophorectomy. In Endometriosis (pp. 189-192). Springer, New York, NY. Retrieved from https://link.springer.com/chapter/10.1007/978-1-4613-8404-5_18

Hirsch, M., Dhillon-Smith, R., Cutner, A., Yap, M., & Creighton, S. M. (2020). The prevalence of endometriosis in adolescents with pelvic pain: a systematic review. Journal of Pediatric and Adolescent Gynecology. Retrieved from https://pubmed.ncbi.nlm.nih.gov/32736134/

Huhtinen, K., Ståhle, M., Perheentupa, A., & Poutanen, M. (2012). Estrogen biosynthesis and signaling in endometriosis. Molecular and cellular endocrinology, 358(2), 146-154. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0303720711005041

Inceboz, U. (2015). Endometriosis after menopause. Women’s Health, 11(5), 711-715. Retreived from https://journals.sagepub.com/doi/full/10.2217/whe.15.59

Jenkins, T. (2009). Endometriosis: The case for surgical excision. The Cutting Edge. Vol. 34, 19-23. Retrieved from https://www.yumpu.com/en/document/read/37376957/endometriosis-the-case-for-surgical-excision-skin-allergy-news

Jenkins, T. R., Liu, C. Y., & White, J. (2008). Does response to hormonal therapy predict presence or absence of endometriosis?. Journal of minimally invasive gynecology, 15(1), 82-86. Retrieved from https://pubmed.ncbi.nlm.nih.gov/18262150/

Jose, C., Fausto, A., & Antonio, L. (2018). Laparoscopic Enhanced Imaging Modalities for the Identification of Endometriosis Implants a Review of the Current Status. MOJ Womens Health, 7(1), 00160. Retrieved from https://www.researchgate.net/profile/Jose_Carugno/publication/323777470_Laparoscopic_Enhanced_Imaging_Modalities_for_the_Identification_of_Endometriosis_Implants_a_Review_of_the_Current_Status/links/5b54617345851507a7bcd5c3/Laparoscopic-Enhanced-Imaging-Modalities-for-the-Identification-of-Endometriosis-Implants-a-Review-of-the-Current-Status.pdf

Khan, K. N., Kitajima, M., Fujishita, A., Nakashima, M., & Masuzaki, H. (2013). Toll‐like receptor system and endometriosis. Journal of Obstetrics and Gynaecology Research, 39(8), 1281-1292.  Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/jog.12117

Leeners, B., Damaso, F., Ochsenbein-Kölble, N., & Farquhar, C. (2018). The effect of pregnancy on endometriosis—facts or fiction?. Human reproduction update, 24(3), 290-299. Retrieved from https://academic.oup.com/humupd/article/24/3/290/4859612

Li, X. Y., Chao, X. P., Leng, J. H., Zhang, W., Zhang, J. J., Dai, Y., … & Wu, Y. S. (2019). Risk factors for postoperative recurrence of ovarian endometriosis: long-term follow-up of 358 women. Journal of Ovarian Research, 12(1), 79. Retrieved from https://ovarianresearch.biomedcentral.com/articles/10.1186/s13048-019-0552-y

Marie-Scemama, L., Even, M., De La Joliniere, J. B., & Ayoubi, J. M. (2019). Endometriosis and the menopause: Why the question merits our full attention. Hormone Molecular Biology and Clinical Investigation, 37(2). Retrieved from https://www.degruyter.com/view/journals/hmbci/37/2/article-20180071.xml

Millochau, J. C., Abo, C., Darwish, B., Huet, E., Dietrich, G., & Roman, H. (2016). Continuous amenorrhea may be insufficient to stop the progression of colorectal endometriosis. Journal of minimally invasive gynecology, 23(5), 839-842.  Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465016300474

Nisenblat, V., Prentice, L., Bossuyt, P. M., Farquhar, C., Hull, M. L., & Johnson, N. (2016). Combination of the non‐invasive tests for the diagnosis of endometriosis. Cochrane Database of Systematic Reviews, (7).  Retrieved from https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD012281/full

Rafique, S., & Decherney, A. H. (2017). Medical management of endometriosis. Clinical obstetrics and gynecology, 60(3), 485.  Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5794019/

Rizk, B., Fischer, A. S., Lotfy, H. A., Turki, R., Zahed, H. A., Malik, R., … & Herrera, D. (2014). Recurrence of endometriosis after hysterectomy. Facts, views & vision in ObGyn, 6(4), 219. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/

Rowe, H., & Quinlivan, J. (2020). Let’s not forget endometriosis and infertility amid the covid-19 crisis. Retrieved from https://www.tandfonline.com/doi/full/10.1080/0167482X.2020.1757200

Sanghera, S., Barton, P., Bhattacharya, S., Horne, A. W., & Roberts, T. E. (2016). Pharmaceutical treatments to prevent recurrence of endometriosis following surgery: a model-based economic evaluation. BMJ open, 6(4), e010580. Retrieved from http://bmjopen.bmj.com/content/6/4/e010580.long

Sarıdoğan, E. (2017). Adolescent endometriosis. European Journal of Obstetrics & Gynecology and Reproductive Biology, 209, 46-49. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0301211516302330

Streuli, I., Gaitzsch, H., Wenger, J. M., & Petignat, P. (2017). Endometriosis after menopause: physiopathology and management of an uncommon condition. Climacteric, 20(2), 138-143. Retrieved from https://www.tandfonline.com/doi/abs/10.1080/13697137.2017.1284781

Taniguchi, F., Higaki, H., Azuma, Y., Deura, I., Iwabe, T., Harada, T., & Terakawa, N. (2013). Gonadotropin-releasing hormone analogues reduce the proliferation of endometrial stromal cells but not endometriotic cells. Gynecologic and obstetric investigation, 75(1), 9-15. Retrieved from https://www.karger.com/Article/Abstract/343748

Torres-Reverón, A., Rivera-Lopez, L. L., Flores, I., & Appleyard, C. B. (2018). Antagonizing the corticotropin releasing hormone receptor 1 with antalarmin reduces the progression of endometriosis. PLoS One, 13(11), e0197698. Retrieved from https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0197698

Yeung Jr, P., Gupta, S., & Gieg, S. (2017). Endometriosis in adolescents: a systematic review. Journal of Endometriosis and Pelvic Pain Disorders, 9(1), 17-29. Retrieved from https://journals.sagepub.com/doi/abs/10.5301/je.5000264

3 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility No comment

Endometriosis and Fertility: Statistics, Facts, & Fiction

Debunking the Myths Surrounding Endometriosis and Reproduction

Disinformation about endometriosis and how it can impact reproduction is thick. As a matter of fact, not just endometriosis and fertility, the entire disorder is shrouded in junk information, and so it often goes misunderstood and mistreated. To learn more on this topic, read our previous article, titled: “Endometriosis Facts and Myths: Dispelling the Misconceptions.”

Does endometriosis cause infertility? In some cases, yes. However, in most cases, women with endometriosis can and do get pregnant without any medical assistance or intervention of any kind. There is still a myth that if you become pregnant, that can manage the endometriosis (endo) symptoms and even help resolve disease progression. 

This statement couldn’t be further from the truth, and it’s an example of a widespread myth about endometriosis and fertility. Furthermore, this school of thought can put additional pressure on women with endometriosis to get pregnant as quickly as possible once they get a diagnosis. As you can imagine, this dangerous misinformation can alter their expectations in terms of treatment for fertility and their outlook on endometriosis in general.

So, Can You Get Pregnant If You Have Endometriosis?

The real truth is that the connection between endometriosis and reproduction is complex. Can you get pregnant if you have endometriosis? Yes, many people can and do. However, having the right endometriosis specialist to help you along the way can make all the difference in your journey. Click here to learn more about finding vetted endo specialists near you. In this article, we will review the disease and lay out the facts regarding endometriosis and fertility.

What is Endometriosis?

Endometriosis is an inflammatory disorder in which tissue similar to the uterus lining grows in places outside the uterus. Often these growths happen on the surface of the uterus, ovaries, fallopian tubes, or other organs within the pelvic cavity – such as the bladder or bowel. In some cases, these endometriosis growths have occurred in distant organs.

Endo growths can cause pain, scarring, and sometimes infertility. Because this tissue is similar to the uterine lining, it also bleeds and sheds once a month during hormonal changes. Typically in the uterus, this period tissue and blood have a means of escaping through the vagina. However, this blood and tissue often accumulate inside the body with endometriosis and causes inflammation and pain. As one can imagine, over time, scar tissue growths with subsequent menstrual cycles develop. Eventually, this scar tissue can fuse organs, immobilize organs, and even damage the fallopian tubes.

Alarming Statistics About Endometriosis & Fertility 

1. Endometriosis is widespread, affecting between six and ten percent of the general female population. That’s more than 170 million worldwide.
2. In patients with pelvic pain, infertility, or both, endometriosis frequency is higher – between 35 percent to 50 percent.
3. Between 25 percent to 50 percent of infertile women have endometriosis.
4. Between 30 percent to 50 percent of women with endometriosis are infertile.
5. Endometriosis affects approximately the same number of women around the world that have diabetes.
6. The cost of endometriosis in the US is between $86 Bn – $116 Bn. 
7. It takes, on average, eight years from the onset of symptoms for a patient to get a diagnosis. This can impact all patients, but especially those of who wish to keep their fertility intact.

Endometriosis Facts About Fertility and Reproduction

1. There are ways to get pregnant with endometriosis.
2. Hormonal therapy does not cure endo. 
3. Endometriosis is related to your menstrual cycle and hormonal changes within your body. 
4. Endometriosis tissue can be removed during laparoscopy. Depending on the location of the growths and the extent of damage, this can sometimes restore fertility.
5. There is a type of endometriosis that can cause cancerous lesions, typically dark chocolate brown. 
6. The causes are uncertain, and there is no “cure” for endometriosis.
7. Genes seem to play a role in the occurrence of endo. 

Myths About Endometriosis and Fertility 

1. Pregnancy is not a cure or a way to relieve symptoms of endometriosis. Women should not be pressured or encouraged to get pregnant to help with endometriosis and fertility or alleviate pain or other symptoms. While some women experience less endo pain and symptoms during their period, that does not mean it works the same for all women.
2. Do not believe any physician that tells you a hysterectomy is the “gold standard” treatment for endometriosis. As mentioned above, there is no “cure” for endometriosis. Until a specialist is inside the body and can view the number and the placement of the endometriosis lesions, they cannot decide whether a hysterectomy would even solve the problems. Also, some women might make themselves infertile (whether they mind or not, it is an emotional part of this disorder) by having a hysterectomy done that was never needed. 
3. You do not need to have a major medical procedure to get an endometriosis diagnosis or remove some growths and lesions. With modern equipment, skilled specialists, and advanced technology (often robotic surgical equipment), you can have endometriosis diagnosis and treatment with laparoscopy. This type of procedure is minimally invasive and only leaves behind a few puncture wounds. 
4. Abortion does not cause endometriosis. 
5. Endometriosis does not cause ovarian cancer. Although a type of endo involves cancerous tumors, this does not mean that having endometriosis makes you more likely to develop cancer.
6. The most important myth to bust is that there is no treatment for endometriosis. Just because there is no “cure” for this pelvic inflammatory disorder does not mean there are no treatment options, even when it comes to endometriosis and infertility.

If you have endometriosis, what is the most common thing you have heard regarding endo and reproduction?

3 years ago Endometriosis , Endometriosis Education

Recovery- not always smooth sailing

We often get questions about how long will it take to recover from surgery and how long does it take to know if it was successful. The aggravating answer is….it depends. There are many different things that play a part of surgery and recovery.

Recovery will be different for everyone. Everyone has their own innate healing (how quickly you heal, how you react to anesthesia and medications, adhesions, how healthy you were beforehand, etc.). Every surgery is different (what was done during surgery, how long was the surgery). Everyone might have other factors to their symptoms that will need to be addressed as well (such as pelvic floor dysfunction). While the incision on the outside may be small, there may be extensive work on the inside that is healing. Some people may notice a difference as soon as waking up from surgery. For others it may be weeks before they can tell a difference.

The success of the surgery can depend on multiple factors as well. One factor is what was your main goal? Some may have a goal of reduced pain while others may be more focused on fertility. With complete excision, there is the less likelihood of recurrence, but some people have ovarian endometriomas that have a higher recurrence rate if they are trying to preserve their ovaries. Some people may have other factors that are contributing symptoms, such as adenomyosis or interstitial cystitis. Sometimes we hear these wonderful stories of people waking up from surgery and feeling so much better, but that is not the case for everyone- but it doesn’t mean your surgery isn’t successful. Susan Pierce-Richards shares her thoughts on managing pre and post op expectations as someone who has been there: https://icarebetter.com/managing-expectations-pre-op-and-post-op/

For more information about healing after surgery, see: https://icarebetter.com/what-to-expect-in-the-weeks-after-skilled-excision-surgery/

*Remember to follow your surgeon’s instructions and call that surgeon if you have any questions or concerns!

3 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility , Endometriosis Specialist No comment

Does Endometriosis Cause Infertility? Covering the Basics

Learn More About the Connections Between Endometriosis and Infertility

An endometriosis (endo) diagnosis can be a frightening thing. Very frightening. While this inflammatory condition can be binary or non-binary, women of childbearing age are prone to issues with reproduction due to endo. So does endometriosis cause infertility? Keep reading as I break down the basics of this topic. In this comprehensive guide, I will delve into the complex interplay between endometriosis and fertility, exploring the condition’s impact, treatment options, and strategies to overcome potential obstacles on the journey to parenthood.  I will also discuss the emotional impact of this condition on patients.

What is Endometriosis?

Endometriosis is a chronic inflammatory condition. In this disease, endometrial-like lesions implant on tissues and organs throughout the abdomen and pelvis, even elsewhere in the body! These lesions contain glands and stroma, similar to the endometrium (the tissue that lines the uterine walls), causing chronic inflammatory reactions. 

Endometriosis lesions produce many substances and even make their own estrogen, which, as a result, causes a variety of issues locally and systemically. Pain is one of the most common symptoms, though silent endo exists as well. Please continue reading this article to learn more about endometriosis.

Endometriosis and Fertility: Exploring the Connection

While endometriosis does not automatically equate to infertility, there is a well-documented association between the two. Approximately 30% to 50% of individuals with endometriosis experience fertility challenges, though the reasons behind this link are not fully understood. Several potential mechanisms have been proposed:

1. Anatomical Distortions: Endometriosis can cause physical distortions in the reproductive anatomy, leading to scarring, adhesions, and obstructions in the fallopian tubes or ovaries, hindering the fertilization process.
2. Inflammatory Response: The lesions can trigger an inflammatory response, creating an inhospitable environment for fertilization and implantation.
3. Hormonal Imbalances: Endometriosis may disrupt the delicate hormonal balance required for ovulation and implantation, potentially impacting fertility.
4. Egg Quality: Some research suggests that endometriosis may adversely affect egg quality, further complicating the conception process.

Despite these potential challenges, it’s important to note that more than 70% of individuals with mild to moderate endometriosis can conceive naturally, offering hope for those seeking to start a family.

What Happens When Endometriosis Does Cause Infertility?

It can. 25 to 50% of women with infertility have endometriosis, and 30 to 50% of women with endometriosis have infertility. However, it is very encouraging to know that most women with endometriosis can become pregnant. 

This statistic is significant. Many younger women with this disorder feel psychological effects due to the possibility of not being able to have kids. Not all patients carry this sentiment. Growing numbers of people do not want to have children. However, for those who do, these thoughts and emotions about fertility can be devastating. Then, endometriosis patients who do conceive often worry about the pregnancy and subsequent delivery of the baby.

Other Data on Endometriosis and Reproduction

Studies have also demonstrated that the enzyme aromatase may also play a role in endometriosis and infertility. There is an abnormally high level of this enzyme in the endometrium and endometriosis lesions in patients with endometriosis. In the uterus, this enzyme may affect both natural endometrial development and its receptivity for the implantation of the fetus.

Progesterone is another hormone that may play a role in implantation failure. Resistance to this enzyme can affect reproduction, as it is necessary for a normal pregnancy. In some studies, progesterone receptors displayed abnormalities and caused dysregulation in the endometrial layer of the uterus in patients with endometriosis. Levels of progesterone should increase with pregnancy, but with endometriosis, this process is delayed and can cause an unopposed estrogen state that cannot sustain fertility.

Diagnosing Endometriosis: A Multifaceted Approach

Diagnosing endometriosis can be a complex process, as the symptoms can mimic those of other conditions. The diagnostic journey often begins with a physical examination and an evaluation of the individual’s medical history. If endometriosis is suspected, additional tests may be recommended, such as:

1. Ultrasound: An abdominal or transvaginal ultrasound can help identify cysts (endometriomas), possibly endometriosis lesions (this is not common but an up-and-coming area of research), as well as the potential impact on the organs themselves or other abnormalities in the reproductive organs.
2. Laparoscopy: Considered the gold standard for diagnosing endometriosis, a laparoscopy involves a minimally invasive surgical procedure where a small camera is inserted into the abdomen, allowing the surgeon to visually inspect the pelvic organs and take tissue samples if necessary.

While the severity of endometriosis is often classified into stages (minimal, mild, moderate, or severe) based on the extent and location of the endometrial growths, it’s important to note that the stage does not necessarily correlate with the intensity of symptoms or the degree of fertility challenges.

Managing Endometriosis: A Multidisciplinary Approach

The management of endometriosis typically involves a multidisciplinary approach, combining medical and surgical interventions tailored to the individual’s unique circumstances and fertility goals. Treatment options may include:

1. Pain Management: Over-the-counter or prescription pain medications, such as non-steroidal anti-inflammatory drugs (NSAIDs) or hormonal contraceptives, can help alleviate the discomfort associated with endometriosis.
2. Hormone Therapy: Hormonal treatments, such as birth control pills, progestin-only therapy, or gonadotropin-releasing hormone (GnRH) agonists, may have some impact on suppressing the growth of endometriosis and managing symptoms, though these options are only short-term while on the medications and can have some serious side effects.
3. Surgery: Laparoscopic or robotic surgery is recommended to remove endometriosis, scar tissue, or cysts, potentially improving fertility outcomes.
4. Assisted Reproductive Technologies (ART): In cases where natural conception remains challenging, assisted reproductive technologies like in vitro fertilization (IVF) or intrauterine insemination (IUI) may be recommended.

It’s crucial to work closely with a multidisciplinary team, including reproductive endocrinologists, gynecologists, and fertility specialists, to develop a personalized treatment plan that addresses both the management of endometriosis symptoms and the individual’s fertility goals.

Dietary and Lifestyle Considerations

While there is no definitive evidence that specific dietary or lifestyle changes can cure endometriosis or improve fertility outcomes, maintaining a healthy lifestyle can contribute to overall well-being and potentially alleviate some symptoms. Recommendations may include:

1. Balanced Diet: Consuming a diet rich in fresh fruits, and vegetables, minimizing grains, especially gluten, and lean proteins can provide essential nutrients and support overall health.
2. Exercise: Regular physical activity, such as low-impact exercises like walking or swimming, can help manage stress and promote overall well-being.
3. Stress Management: Engaging in stress-reducing activities like meditation, yoga, or deep breathing exercises can help promote relaxation and reduce the impact of stress on fertility.
4. Supplements: While the evidence is limited, some individuals report benefits from taking supplements for pain relief, reducing inflammation, and improving their quality of life.

It’s essential to consult with a healthcare professional before making significant dietary or lifestyle changes, especially if you are undergoing fertility treatments or considering assisted reproductive technologies.

Endometriosis and Pregnancy: Potential Complications

While endometriosis does not necessarily preclude a successful pregnancy, it’s important to be aware of potential complications that may arise. Some of the risks associated with endometriosis during pregnancy include:

1. Placenta Previa: Endometriosis may increase the risk of placenta previa, a condition where the placenta partially or completely covers the cervix, potentially leading to bleeding and complications during pregnancy or delivery.
2. Miscarriage: Research findings on the link between endometriosis and miscarriage have been mixed, with some studies suggesting an increased risk while others found no significant association.
3. Ectopic Pregnancy: Endometriosis may increase the risk of ectopic pregnancy, where the fertilized egg implants outside the uterus, typically in the fallopian tube.

It’s essential to work closely with your healthcare provider to monitor and manage any potential complications that may arise during pregnancy if you have endometriosis.

Mental Well-Being and Psychological Impact of Fertility Treatment for Endo Patients

Living with endometriosis can be a challenging and emotionally taxing experience, particularly for those struggling with fertility issues. The physical pain, emotional distress, and potential financial burdens associated with treatment can take a toll on an individual’s mental well-being. It’s crucial to prioritize self-care and seek support from mental health professionals, support groups, or counseling services if needed.

Furthermore, you and your partner can do these things to help prepare for these possible feelings:

• Prepare and be ready for the emotional journey ahead.
• Cope with grief and loss associated with unsuccessful prior attempts or miscarriages.
• Develop strategies for coping with the news of other people’s births and pregnancies.
• Keep the communication lines between you and your partner open and discuss feelings throughout the entire process.

Endometriosis and Fertility: Navigating the Journey

The path to parenthood for individuals with endometriosis can be challenging, but it’s important to remember that fertility challenges are not insurmountable. By working closely with a multidisciplinary team of healthcare professionals, exploring various treatment options, and maintaining a positive outlook, many individuals with endometriosis can achieve their dream of starting a family.

It’s crucial to be proactive in seeking support and guidance from healthcare providers, as well as accessing resources and support networks specifically designed for those navigating endometriosis and fertility challenges. Organizations like the American Society for Reproductive Medicine (ASRM) and Endometriosis UK offer valuable information, resources, and advocacy support for individuals on this journey.

While endometriosis may present obstacles, embracing a comprehensive approach that addresses both the condition and fertility goals can increase the chances of a successful outcome. With perseverance, the right medical support, and a commitment to self-care, the dream of parenthood can become a reality for many individuals with endometriosis.

REFERENCES

https://www.reproductivefacts.org/news-and-publications/fact-sheets-and-infographics/endometriosis-does-it-cause-infertility

https://www.pennmedicine.org/updates/blogs/fertility-blog/2016/august/endometriosis-and-fertility

https://www.brighamandwomens.org/obgyn/infertility-reproductive-surgery/endometriosis/endometriosis-and-fertility

https://www.tommys.org/pregnancy-information/planning-a-pregnancy/fertility-and-causes-of-infertility/how-does-endometriosis-affect-fertility

https://www.endometriosis-uk.org/endometriosis-fertility-and-pregnanc

Updated: August 9, 2024

3 years ago Endometriosis , Endometriosis Education

Endo in adolescents

Adolescents can be affected by endometriosis. In fact, according to American College of Obstetricians and Gynecologists:

“Endometriosis is the leading cause of secondary dysmenorrhea in adolescents. Endometriosis should be considered in patients with persistent, clinically significant dysmenorrhea despite treatment with hormonal agents and NSAIDs, particularly if no other etiology for chronic pelvic pain or secondary dysmenorrhea has been identified based on history, physical examination, and pelvic ultrasonography. Family history of endometriosis also should raise suspicion because patients with an affected first-degree relative have a 7-fold to 10-fold increased risk of developing endometriosis.”

Adolescents experience significant symptoms and delays in diagnosis. DiVasta et al. (2018) found that their study’s participants “experienced moderate-severe menstrual pain” and that “3 doctors were seen before diagnosis, regardless of age at presentation.” It took an average of 2 years for adolescents to receive a diagnosis (DiVasta et al., 2018). According to the study, they found that participants reported:

“More adolescents (50%) than adults (33%) reported pain starting at menarche and nausea accompanying pain. Noncyclic, general pelvic pain was prevalent. One-half of the participants reported relief of their general pelvic pain after a bowel movement. Pain interfered with work/school, daily activities, exercise, and sleep to a moderate-extreme degree; difficulties were similar by age at diagnosis.”

Find more information here: https://icarebetter.com/teens-and-endometriosis/

References

American College of Obstetricians and Gynecologists. (2018). Dysmenorrhea and endometriosis in the adolescent. Retrieved from https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2018/12/dysmenorrhea-and-endometriosis-in-the-adolescent

DiVasta, A. D., Vitonis, A. F., Laufer, M. R., & Missmer, S. A. (2018). Spectrum of symptoms in women diagnosed with endometriosis during adolescence vs adulthood. American journal of obstetrics and gynecology, 218(3), 324-e1. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0002937817324821

3 years ago Endometriosis , Endometriosis Education

Blood tests for endometriosis- not yet

We hear more and more about blood tests using DNA, RNA, and microRNA being researched as a possible way to help diagnose endometriosis. While more studies are needed, these tests do show some promise (Zafari et al., 2021). It would be nice to be a able to get a simple blood test and know that you probably have endometriosis and be able to plan accordingly. As Fassbender et al. (2015) states: “The most important goal of the test is that no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis-associated pain and/or infertility.”

MicroRNA are one specfic type of blood test being investigated. MicroRNA are involved in gene expression. Humans have “over 700 miRNAs” that “have been identified and fully sequenced”; these “miRNAs in humans have a direct influence on at least 30% of the genes in the whole genome” (Meštrović, 2018). Papari et al. (2020) explain that: “microRNAs are present in body fluids, including blood…which makes them more stable than circulating hormone or cytokine concentrations and therefore better candidate markers of disease. One miRNA can target several genes, and one gene can be targeted by different miRNAs. Circulating levels of miRNAs are dysregulated in several different cancers and in endometriosis.”

Papari et al. (2020) further states that “no clinical marker of endometriosis, either alone or in combination, has provided adequate sensitivity or specificity for the diagnosis of endometriosis. Thus, the search for suitable diagnostic markers of endometriosis remains a high but unmet research priority.” They did find in their study that a panel of different microRNA improved the accuracy of the test (Papari et al., 2020). Similar to ultrasounds, MRI’s, and other diagnostics studies, they might be helpful to rule in endometriosis but not necessarily entirely rule it out (see “But All Your Tests Are Negative”). It might be an initial step towards investigating the possibility of endometriosis once tests become available, but further investigation is warranted even if negative.

For more information see “Labwork and Blood Tests“

References

Fassbender, A., Burney, R. O., F O, D., D’Hooghe, T., & Giudice, L. (2015). Update on biomarkers for the detection of endometriosis. BioMed research international, 2015. Retrieved from https://www.hindawi.com/journals/bmri/2015/130854/

Meštrović, T. (2018). What is MicroRNA. Retrieved from https://www.news-medical.net/life-sciences/What-is-MicroRNA.aspx

Papari, E., Noruzinia, M., Kashani, L., & Foster, W. G. (2020). Identification of candidate microRNA markers of endometriosis with the use of next-generation sequencing and quantitative real-time polymerase chain reaction. Fertility and Sterility, 113(6), 1232-1241. Retrieved from https://www.fertstert.org/article/S0015-0282(20)30027-3/fulltext

Zafari, N., Bahramy, A., Majidi Zolbin, M., Emadi Allahyari, S., Farazi, E., Hassannejad, Z., & Yekaninejad, M. S. (2021). MicroRNAs as novel diagnostic biomarkers in endometriosis patients: a systematic review and meta-analysis. Expert Review of Molecular Diagnostics, 1-17. Retrieved from https://www.tandfonline.com/doi/abs/10.1080/14737159.2021.1960508

3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist No comment

Find Endometriosis Specialists for the Best Possible Outcomes

Why You Need an OB-GYN Who Specializes in Endometriosis

Endometriosis is common (affecting nearly 190 million women worldwide) but poorly understood by many medical professionals. It’s hard to find endometriosis specialists who have completed advanced training. With the proper endo specialist, medical treatment or surgery can lessen your pain, improve your quality of life, and manage complications.

Endometriosis is a chronic pain condition that affects 10-15% of women of reproductive age. It causes painful periods, bleeding between periods, pain during sexual intercourse, and discomfort when passing urine or feces. Despite causing chronic pelvic pain, many medical professionals have a poor understanding of the condition.

In this article, we will look into what endometriosis is and explore how to improve diagnosis, treatment, and outcome factors.

What is Endometriosis?

Endometriosis affects menstruating women and girls and some women post-hysterectomy or post-menopause. The condition also can affect transgender men and non-binary individuals. Endometriosis affects roughly 190 million people worldwide, with immune, genetic and hormonal factors all likely to be at play. 

To understand Endometriosis, we first need to understand the endometrium or lining of the uterus.

The Endometrium

A large proportion of the endometrium is stromal cells. Stromal cells regulate cell growth and change during the menstrual cycle.

Endometrial glands line the endometrium. During the menstrual cycle, they widen in response to greater blood flow.

Each cycle, stromal cells, and endometrial glands slough off as part of menstruation.

Endometriosis Lesions

The presence of endometrium-like cells found outside the uterus causes the classic endometriosis symptoms. Discourse exists, but scientists have concluded a genetic basis to the cells’ presence, with endometrium-like cells migrating inappropriately during embryogenesis.

Endometriotic lesions can be in the ovaries, uterine ligaments, fallopian tubes, and pouch of Douglas (the space between the uterus and rectum). In some, lesions are present outside the pelvic cavity. Locations include the bowel, urinary tract wall, diaphragm, lungs, abdomen, and pericardium (the sack around the heart).

The endometrial-like tissue responds to the natural cycle of hormones and also produces some hormones by itself. This tissue has cycles of growth and bleeding. 

Whereas menstrual blood in the uterus leaves the body via the vagina, the blood and tissues cannot escape from endometriosis lesions. This trapped cells and tissue leads to the painful processes of inflammation, adhesions, and scarring.

What does it feel like to have Endometriosis?

Although pain is the most common complaint, Endometriosis causes a wide range of symptoms, including:

• Painful periods
• Heavy periods (menorrhagia)
• Vaginal bleeding between periods
• Pain on passing urine or feces
• Bowel symptoms include bloating, constipation, diarrhea, or bleeding from the bowel
• Pain during intercourse
• Tiredness
• Depression
• Infertility.

Social and Emotional Effects

Severe pain can interrupt daily life for many patients. This interruption may include missing school, taking days off work, or being unable to socialize. A study in 2020 found that in over half of women, the pain had reduced their professional, physical, and sexual activity. 

Endometriosis is associated with low mood. 15% of women are diagnosed with depression, with an average age at diagnosis of 22. 

Infertility

Infertility can be the only symptom of Endometriosis for some women. Around 30-50% of patients cannot get pregnant owing to inflammation, pelvic adhesions, blockage of the fallopian tubes, and changes to the pelvic anatomy.

Other Symptoms

Additional symptoms are dependent on the location of endometriosis lesions. For example, an endometriotic lesion in the lung could cause breathlessness or chest pain. A study of over 2000 patients found that endometriotic nodules caused leg and buttock pain, as well as numbness, similar to sciatic pain. 

Misdiagnosis and incorrect management are therefore common for women with symptoms that are not classic to pelvic endometriotic lesions. 

Endometriosis Myths

The average delay in the diagnosis of Endometriosis is more than seven years, leading to “unnecessary suffering and reduced quality of life.” This delay leads many people to the internet to conduct their own research before and during diagnosis. However, the internet is awash with myths.  

The importance of educating yourself via a reputable source such as iCareBetter cannot be understated.  

Find Endometriosis Specialists for Appropriate Diagnosis & Treatment 

The widespread misunderstanding of Endometriosis hinders its diagnosis and treatment. The inappropriate investigation, treatment with analgesics, or hormonal suppression do little to manage the cause while delaying diagnosis. Women who felt they were not listened to nor understood by doctors have described frustration, anger, annoyance, and sadness.

Reassuringly, appropriate diagnosis and treatment can lead to significant improvements in pain. This is precisely why it is crucial to find an endometriosis specialist. Only highly specialized surgeons with a comprehensive team can perform a thorough excision to remove endometriotic lesions, including extra-pelvic locations. Complete removal can significantly improve overall outcomes, including relief from pain and increased quality of life.

iCareBetter Endometriosis Care

iCareBetter is a platform that connects patients with experts in endometriosis care. At iCareBetter, patients have access to surgeons who have completed advanced training. These professionals have shown expertise in the diagnosis and treatment of complex Endometriosis. iCareBetter utilizes a transparent and unbiased system to ensure that only doctors with proven advanced excision skills and a comprehensive care team can be on their surgeons’ list.

Patients can select their surgeon based on their specific symptoms. This empowers patients to consult a doctor who truly understands the complexity of their condition. Patients can access specialists for endometriosis in the pelvis, bowels, bladder, thorax, heart, or diaphragm. They also can find help with infertility issues.

A highly specialized endo surgeon will take a holistic approach to treatment. This holistic approach includes managing secondary comorbidities such as infertility, even in stage III and IV disease patients. 

At iCareBetter, patients can also access expert physical therapists who understand the condition. Working with a physical therapist gives access to myofascial release techniques, visceral mobilization, and the tools to manage a susceptible nervous system for better pain management.

Team-based expert care improves post-operative outcomes. For some iCareBetter doctors, post-treatment reports of satisfactory pain relief could be over 80%, with less than 20% of women requiring subsequent pelvic surgery. Moreover, many patients see reduced pain relief requirements post-recovery.

Standards of excellence, such as those endorsed by iCareBetter, must become a driving force behind treatment protocols for Endometriosis. Women should no longer shoulder the pain and reduced quality of life associated with substandard care.

Conclusion

Endometriosis occurs due to the presence of endometrium-like cells found outside the uterus. The resulting inflammation, adhesions, and scarring can cause severe pain and symptoms related to the location of the lesions. By connecting patients with expert surgeons in endometriosis care, iCareBetter empowers patients to access the care leading to better outcomes. Advanced surgical excision, physical therapy, and an expert team-based approach can reduce pain, as well as skillfully manage secondary complications.
Find endometriosis specialists today.

3 years ago Endometriosis , Endometriosis Education

Curcumin’s effect on endometriosis

Endometriosis is an inflammatory disorder, and inflammation can lead to increased pain, fatigue, and general feelings of unwellness (Nothnick & Alali, 2016). It has been shown that “endometriotic lesion removal significantly alters the inflammatory profile both locally and systemically in women with endometriosis” (Monsanto et al., 2016). While some of us work on achieving that expert excision of endometriosis lesions, we look for things that might potentially help in the meantime. One thing we hear about often in the media these days is turmeric.

Curcumin has been mainstreamed for its effects on inflammation. Curcumin is the “major bioactive component of the spice herb turmeric…used traditionally in Indian and Chinese medicine and widely consumed in the Asian diet” (Jager et al., 2014). While there are not many strong studies to support its effect on endometriosis, some studies have indicated that it can lower inflammation, reduce the growth of new blood vessels (angiogenesis), act as an antioxidant, and induce apoptosis (programmed cell death in damaged cells).

For example, Vallée and Lecarpentier (2020) report that “curcumin can downregulate inflammation and [oxidative stress] in endometriosis” and suggest that “future clinical trials are needed to better investigate and highlight the role of curcumin in endometriosis.” Balan et al. (2021) further reports that “in endometriosis, curcumin reduced the number of endometriotic cells through the modulation of estrogen levels” as well as has anti-angiogenic function, anti-oxidative potential, and can induce apoptosis. Kamal et al. (2021) reports that “in vitro and in vivo studies reported the positive effects of curcumin in alleviating endometriosis through anti-inflammatory, anti-proliferative, anti-angiogenic and pro-apoptotic mechanisms.” Kamal et al. (2021) further comments that:

“Some studies found considerable therapeutic effects, whereas others found no effect. However, none of the investigations found curcumin to be harmful. Curcumin clinical trials in endometriosis and ovarian illness are still scarce; thus, future studies need to be conducted to confirm the safety and efficacy of curcumin before it could be offered as a complementary therapy agent.”

The formulation of curcumin is important as “the potential health benefits of curcumin are limited by its poor solubility, low absorption from the gut, rapid metabolism and rapid systemic elimination….A formulation of curcumin with a combination of hydrophilic carrier, cellulosic derivatives and natural antioxidants significantly increases curcuminoid appearance in the blood in comparison to unformulated standard curcumin” (Jager et al., 2014). While there is not strong evidence to support its use in endometriosis, it shows some promise in battling the effects of inflammation from endometriosis until the lesions can be removed.

Is there an endometriosis Diet?

References

Balan, A., Moga, M. A., Dima, L., Dinu, C. G., Martinescu, C. C., Panait, D. E., … & Anastasiu, C. V. (2021). An Overview on the Conservative Management of Endometriosis from a Naturopathic Perspective: Phytochemicals and Medicinal Plants. Plants, 10(3), 587. Retrieved from https://www.mdpi.com/2223-7747/10/3/587/htm

Jäger, R., Lowery, R. P., Calvanese, A. V., Joy, J. M., Purpura, M., & Wilson, J. M. (2014). Comparative absorption of curcumin formulations. Nutrition journal, 13(1), 1-8. Retrieved from https://nutritionj.biomedcentral.com/articles/10.1186/1475-2891-13-11

Kamal, D. A. M., Salamt, N., Yusuf, A. N. M., Kashim, M. I. A. M., & Mokhtar, M. H. (2021). Potential Health Benefits of Curcumin on Female Reproductive Disorders: A Review. Nutrients, 13(9), 3126. Retrieved from https://www.mdpi.com/2072-6643/13/9/3126

Monsanto, S. P., Edwards, A. K., Zhou, J., Nagarkatti, P., Nagarkatti, M., Young, S. L., … & Tayade, C. (2016). Surgical removal of endometriotic lesions alters local and systemic proinflammatory cytokines in endometriosis patients. Fertility and sterility, 105(4), 968-977. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4851862/

Nothnick, W., & Alali, Z. (2016). Recent advances in the understanding of endometriosis: the role of inflammatory mediators in disease pathogenesis and treatment. F1000Research, 5. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760268/pdf/f1000research-5-8083.pdf 

Vallée, A., & Lecarpentier, Y. (2020). Curcumin and endometriosis. International journal of molecular sciences, 21(7), 2440. Retrieved from https://www.mdpi.com/1422-0067/21/7/2440/htm

3 years ago Endometriosis , Endometriosis Education , Endometriosis Mental Health 13 comments

Impact of Living with Endometriosis and Mental Health

(All research studies mentioned in this article about the impact of endometriosis on mental health enrolled people with assigned female gender at birth. However, to be inclusive to all people with endo, we use people throughout the article.)

Being diagnosed with endometriosis (endo) and living with it can bring up a lot of emotions. It can mean making space for changes that you may never have predicted or accounted for. Endometriosis impacts nearly 200 million people worldwide, but there is pernicious misinformation and a lack of awareness and understanding among the medical community and the larger society. This misinformation and lack of awareness stand in the way of receiving a timely diagnosis.

It takes, on average, over seven years for a person who has endometriosis to get a diagnosis. Essentially, this means experiencing intense pain, feeling unheard over and over, and being gaslit at a systemic level for at least seven years. 

In most countries, managing the pain and heavy periods remain the first line of treatment for endometriosis. If one is lucky, they can access endometriosis excision surgery. However, the impact of endometriosis goes beyond just the physical. The effect of endometriosis on mental health and the emotional wellbeing of the person is enormous.

Link Between Endometriosis Pain and Mental Health

The mental health struggles of living with endometriosis vary from person to person. The debilitating chronic endometriosis pain, one of the most common symptoms, is a critical factor that impacts the quality of life and mental health. Along with the cyclic pelvic pain, one may also experience other types of pain in varying degrees: 

• Non-menstrual pelvic pain
• Pain during ovulation, urination, and/or bowel movements
• Pain during sex
• Sciatic pain
• Pain post and during orgasms
• Widespread full-body pain. 

Research published in the International Journal of Women’s Health Health looked at the link between common symptoms of endometriosis and mental wellbeing. 

It found that a person experiencing chronic pelvic pain (CPP) is likely to feel higher levels of anxiety and depression, which can further amplify the perception and severity of pain, thus placing them in a vicious circle of physical and psychological distress. 

Figure 1: The vicious circle of chronic pelvic pain and psychological disease.

Pelvic Pain Causes Further Effects of Endometriosis on Mental Health

A study found that endometriosis patients with pelvic pain had poorer quality of life and mental health than those with asymptomatic endometriosis. It also showed that non-menstrual pelvic pain impacts all the variables of a person’s life. Thus, the study emphasized psychological interventions as an essential aspect of the endometriosis treatment plan and pain management treatments and interventions.  

In another meta-analysis of 99,614 people from 24 different studies, researchers found that chronic pelvic pain was a primary factor contributing to the higher rates of depression in patients with endometriosis. This study emphasized that treating this kind of depression with antidepressants without the efforts towards managing the chronic pain would indeed be ineffective. 

The Emotional Reality of Endometriosis

Studies have tried to understand the impact and management of endometriosis within the medical healthcare system. But still, the health system has largely overlooked the effect of endometriosis on mental health. 

Living with endometriosis can make daily activities a struggle, mainly due to the unpredictability of pain and fatigue. The struggle makes some tasks nearly impossible. These tasks can include planning, working, socializing, exercising, eating, or even basics like cooking, cleaning, and bathing. This inability fuels guilt and anxiety. Furthermore, the debilitating pain being reduced to “just a bad period” or “psychosomatic” often leaves one feeling gaslit, isolated, depressed, and sometimes suicidal.

This distress increases due to the lack of systemic and psychosocial support. When the BBC spoke to 13,500 people (female assigned at birth) with endometriosis, more than 50% of the respondents felt suicidal ideations. 

This is a battle

For someone living with chronic pain every day, even a short-lived moment of low pain brings ease, which allows one to hope for a future not controlled by pain. However, grief sets in quickly as fatigue and flare-ups follow. These changes make life with endometriosis incoherent and an inescapable dance between hope and grief. A Swedish study concluded that people living with painful endometriosis underwent a constant struggle for coherence in their lives. It emphasized that healthcare providers should validate this struggle by understanding the disease-related grief. 

The anxiety around pain and health, the grief related to the future, the loneliness and isolation often bring up the feeling that chronic pain has monopolized one’s life. Endometriosis becomes the central point around which all decisions revolve. It takes away the body’s ability to be reliable and the capacity to feel safe within it. It often changes the way one views themselves and takes the world in. 

One of the ways we feel safe in the world is by feeling safe in our bodies. Then what happens to our sense of safety when the body is a constant source of never-ending pain? 

The Trauma of Endometriosis

Experts define trauma as the experience of being left alone with one’s pain. Endometriosis isn’t different. Having to constantly explain one’s pain to medical doctors, families, and friends and still not being believed is an isolating and traumatizing experience. For some, this experience of being gaslit gets stored in the body and pushes the nervous system into a hypervigilant state (Fight, Flight, Freeze). 

This experience of trauma can bring up various responses, anger being one of them. The anger can be at the world, the state, the body, the systems, other people, or the pain. It becomes our protective mechanism in response to the powerlessness that one feels while coping with endometriosis. 

The Way Forward

In treating endometriosis, it becomes necessary to consider its impact on mental health and provide psychosocial support to people with endometriosis and their families. Unlike the conventional medical belief that solely focuses on the physiological aspects, a multidisciplinary approach integrating the mind and the body is necessary. 

A trauma-informed psychotherapist specialized in treating endometriosis, and chronic pain can be helpful. A therapist trained in chronic pain management understands endometriosis, related diagnoses, and its trauma. This understanding is an integral part of the healing process. Seeing the light at the end of the tunnel is complicated and sometimes impossible with pain. Verbalizing the pain, having the hardships validated, acknowledged, and believed can be an empowering experience. Just as people seek medical help for their physical symptoms, seeking help for mental health struggles is an integral part of the endometriosis journey. If therapy is hard to access, support groups for endometriosis can be a step forward. You should know that you are not alone in your experience, and you can have support. The supports that you get can be a lifeline to your mental health. 

Author: Anindita Kundu, Trauma Psychotherapist. 

How has endometriosis impacted your mental health? Have you considered working with a mental health specialist to help you?

3 years ago Endometriosis , Endometriosis Education

Hysterectomy and endometriosis

A hysterectomy is not a cure for endometriosis; however, many people with endometriosis also experience problems with their uterus or ovaries (such as adenomyosis, fibroids, ovarian cysts, and other conditions that can contribute to chronic pelvic pain) that could benefit from removal of the uterus and/or ovaries. For example, adenomyosis and endometriosis have been found together anywhere from 21.8% to 79% of the time (Antero et al., 2017; Di Donato et al., 2014; Kunz et al., 2005). Both endometriosis and fibroids have been found together in 12-26% of patients, although one small study found both in 86% of the patients studied (Huang et al., 2010; Nezhat et al., 2016; Uimara et al., 2011).

However, the benefits versus the risks of removal of the uterus and especially the ovaries must be weighed carefully. For some of the effects of long term low estrogen see here. Using a hysterectomy to treat endometriosis alone may still leave you susceptible to continued symptoms and other problems from remaining lesions [one example: hydronephrosis from endometriosis left around ureters (Bawin, Troisfontaines, & Nisolle, 2013)]. For more on endometriosis persisting after a hysterectomy see here.

• “The main result of our study is somewhat surprising and contrary to the common notion that hysterectomy, as a last measure, effectively relieves endometriosis-related pain. Nevertheless, the results are in line with two other national register studies on postoperative pain and patient-reported outcomes. Hysterectomy is often considered the last option to treat endometriosis, as the procedure by its very nature ends reproduction. If hysterectomy does not decrease the need for analgesics postoperatively, the effectiveness of the procedure as an integral, albeit final, stage of endometriosis pain management becomes doubtful, however.” (Brunes et al., 2021)
• “Persistent or recurrent endometriosis after a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH BSO) has been reported by several investigators.” (Hasty & Murphy, 1995)
• “According to literature, there are no randomized controlled trials for hysterectomy as the treatment for endometriosis.” (Bellelis, 2019)
• “Endometriosis which is not removed at the time of hysterectomy and bilateral salpingo‐oophorectomy may represent after a variable time interval with many or all of the symptoms which prompted the original surgery. This tissue can be highly active and responsive to exogenous hormonal stimulation. In the presence of troublesome symptoms, excision of residual endometriosis may be effective and should be considered.” (Clayton et al., 1999)
• “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient’s age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.” (Rizk et al., 2014)
• “Studies have showed that the growth and progression of endometriosis continue even in ovariectomized animals.” (Khan et al., 2013)
• Read more here: “Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief”: http://endopaedia.info/treatment21.html

References

Bellelis, P. (2019). 2607 Hysterectomy in Women with Endometriosis. Journal of Minimally Invasive Gynecology, 26(7), S177. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465019307393

Brunes, M., Altman, D., Pålsson, M., Söderberg, M. W., & Ek, M. (2021). Impact of hysterectomy on analgesic, psychoactive and neuroactive drug use in women with endometriosis: nationwide cohort study. BJOG: An International Journal of Obstetrics & Gynaecology, 128(5), 846-855. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.16469

Clayton, R. D., Hawe, J. A., Love, J. C., Wilkinson, N., & Garry, R. (1999). Recurrent pain after hysterectomy and bilateral salpingo‐oophorectomy for endometriosis: evaluation of laparoscopic excision of residual endometriosis. BJOG: An International Journal of Obstetrics & Gynaecology, 106(7), 740-744. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.1999.tb08377.x?fbclid=IwAR04aFoLsukqsYutNPNXtJNZpKLNEJbgOOon334NW8D7wvwzZMWaS2YaZts

Hasty, L. A., & Murphy, A. A. (1995). Management of recurrent endometriosis after hysterectomy and bilateral salpingo-oophorectomy. In Endometriosis (pp. 189-192). Springer, New York, NY. Retrieved from https://link.springer.com/chapter/10.1007/978-1-4613-8404-5_18

Khan, K. N., Kitajima, M., Fujishita, A., Nakashima, M., & Masuzaki, H. (2013). Toll‐like receptor system and endometriosis. Journal of Obstetrics and Gynaecology Research, 39(8), 1281-1292.  Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/jog.12117

Rizk, B., Fischer, A. S., Lotfy, H. A., Turki, R., Zahed, H. A., Malik, R., … & Herrera, D. (2014). Recurrence of endometriosis after hysterectomy. Facts, views & vision in ObGyn, 6(4), 219. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/

See https://icarebetter.com/learning-library/related-conditions/

3 years ago Endometriosis Education , Endometriosis Physical Therapy No comment

Questions to Ask Your Physical Therapist When You have Endometriosis

Author: Dr. Rebecca Patton, PT, DPT

“I feel like you’re the first physical therapist who understands endo.” It’s a statement I wish I didn’t hear as often as I do. Unfortunately, there has not been a resource specifically made to evaluate pelvic physical therapists’ knowledge about endometriosis before iCareBetter.

Education for physical therapists regarding endometriosis needs more advanced continuing education courses. But it doesn’t typically happen until after completing a doctoral program. For perspective, I self-taught for several years before seeking specific classes related to endometriosis care. Therefore, it wasn’t until years after specializing in pelvic pain treatment that I realized the inefficiency of care for those with endometriosis. We can do better, but we have a long way to go.

Communicating with a pelvic physical therapist before seeking treatment can allow you to ask important questions to ensure you’re finding a provider that is a good fit for you. For achieving this goal, take advantage of time-saving strategies such as a phone consultation before committing to a therapist. Here are a few questions you may want to ask during that phone consultation or the first visit with a pelvic physical therapist for your endometriosis issues.

Endometriosis Care Process with iCareBetter

1- Find an expert based on keyword/ specialty or state
2- choose your doctor from the list
3- Get the contact info
4- First call and consultation.
5- Get info regarding costs and care process
6- Receive care

Top endometriosis physical therapists

Endometriosis Physical Therapy

Table of contents

1. Are you familiar with the disease process and current treatment standards for endometriosis?

2. Do they consider the whole body when treating your symptoms?

3. Do they practice trauma-informed care specifically related to healthcare trauma?

4- How much time will you have for a session?

References

1. Are you familiar with the disease process and current treatment standards for endometriosis?

It is helpful when your treating therapist is up to date on current treatment standards, as with any diagnosis. Unfortunately, there is no specific physical therapy protocol for treating patients with endometriosis. However, physical therapists should understand who will be involved in your healthcare team and have a multidisciplinary approach (1). I aim to establish what provider, either GYN or expert surgeon, will be a point of contact on that first visit. 

2. Do they consider the whole body when treating your symptoms?

  Endometriosis is known as a pelvic disease, but we know it is much more than that. Your physical therapist needs to tap into their education to evaluate and treat the whole body. The secondary effect of endo is often an upregulated nervous system. On the initial visit, it is typical that your physical therapist will look at movement patterns from your neck to your feet. Internal pelvic floor assessments are common but certainly do not need to happen on the first visit. Pelvic floor function is only one component in a much larger picture of your overall function. Your individual goals and comfort will dictate how much treatment involves pelvic floor treatment. 

Advanced Treatments and education

Treatment involving the abdominal wall fascia, diaphragm, and viscera (organs) require additional advanced coursework compared to treating the pelvic floor. Therefore, you can ask them if they have taken additional coursework to treat the abdomen to get an idea of their experience. There is not one single treatment philosophy for the abdomen, but some courses focus on continuing education in this area. The most common that I am familiar with are The Barral Institute (2), Ramona Horton MPT, DPT (3), and Institute of Physical Art (4). Other courses involve manual nerve techniques such as Lumbar and Sacral Nerve Manual Assessment through the Herman and Wallace Pelvic Rehab Institute (5). These are just a few of the many available resources your physical therapist may use to learn more after graduate school. Some pelvic physical therapists create their treatment tanks to teach one another these skillsets.

Treatment strategies that help regulate an upregulated nervous system may be part of your care. These strategies can look like gentle hands-on treatment, questions to help you process how you relate to your body, and creating mindfulness along with movement. The connection of how our nervous system interprets information from our body is complex. A physical therapist can be a valuable resource to help you better understand the pain response and the nervous system.

3. Do they practice trauma-informed care specifically related to healthcare trauma?

Trauma-informed care in physical therapy does not substitute mental health treatment. A trauma-informed approach concerning physical therapy means understanding the entirety of the patient’s experience and the effects of that experience. Medical trauma can have a lasting response on an individual’s well-being (6). We know that those with endo, on average, have a delayed diagnosis. This delay can lead to a complicated relationship with the medical providers. Many patients with endo are seeking out pelvic PT after years of seeing various specialists. These experiences with the medical system can create barriers to a patient feeling comfortable with a new provider. 

For this reason, a trauma-informed approach to treatment is essential. Awareness of how these experiences may have impacted their patient is a critical portion of providing affirming care. You can ask your physical therapist about some processes that they use to create a safe environment. These processes should include consent before any treatment or touching, checking in with your emotions and body reaction during manual therapy, and providing adequate time to provide education throughout the session.

4. How much time will you have for a session?

Asking this question can ensure you have an idea of what to expect when going into your appointment. There is no magic number of minutes that will create a perfect appointment. However, the nature of endo being more complex means I prefer more time to establish a care plan. There are multiple factors to consider during the first evaluation. These factors include sexual health, daily function, bowel and bladder health, and personal goals. Having realistic expectations for each session is helpful to decrease additional medical trauma and find a therapist that fits your needs.

Patient care and human interaction are complex, and sometimes it takes time to establish a level of comfort with your PT. Every session of PT may not equal a breakthrough in pain. Retraining the nervous system takes time, especially when the body has been protecting itself due to chronic pain.

Ultimately, endo care is ideally a multidisciplinary approach. Your physical therapist can work closely with your gynecologist and other healthcare team members to find the best individual plan for you. 

If you have more questions about pelvic physical therapy, reach out for more information. 

Would you mind sharing with us what pleasant or unpleasant experiences you have had with your PT?

References:

1.      Agarwal SK, Foster WG, Groessl EJ. Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis. Int J Womens Health. 2019;11:405-410. Published 2019 Jul 23. doi:10.2147/IJWH.S207373

2.      Jean-Pierre Barral, DO, MRO(F), RPT. The Barral Institute.  Accessed September 1^st, 2021. https://www.barralinstitute.com/

3.      Ramona Horton, MPT, DPT.  Herman and Wallace Pelvic Rehabilitation Institute. Accessed August 27^th, 2021.  https://hermanwallace.com/faculty/ramona-horton

4.      Institute of Physical Art. 2015-2021. Accessed August 19^th, 2021.  https://instituteofphysicalart.com/

5.      Nari Clemmons PT, PRPC.  Herman and Wallace Pelvic Rehabilitation Institute.  Accessed August 20^th, 2021.  https://hermanwallace.com/faculty/nari-clemons6.      Michelle Flaum Hall and Scott E. Hall. When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma.  American Counseling Association.  March 24^th, 2013.  Accessed August 19^th, 2021. https://www.counseling.org/knowledge-center/vistas/by-year2/vistas-2013/docs/default-source/vistas/when-treatment-becomes-trauma-defining-preventing-

3 years ago Endometriosis , Endometriosis Education

Endometriosis: Impact on Work

We see time and again the impact the symptoms of endometriosis have on daily life. Regarding work and productivity, researchers found that people with endometriosis reported “17.1% of work time missed, 41.8% impaired work ability, 46.5% overall work impairment, and 41.4% activity impairment” with the greatest effect of fatigue and productivity impairment on those in their 30’s (Soliman et al., 2021). Another study reports that persons with endometriosis were “less often able to work in their desired profession than women from the control group…and they had to take health-related limitations into consideration in their career decisions to a significantly higher degree than women in the control group” (Sperschneider et al., 2019). Chronic pain from endometriosis was “was significantly associated with increased sick leave as well as with loss of productivity at work” (Sperschneider et al., 2019). How has endometriosis impacted your ability to work?

References

Sperschneider, M. L., Hengartner, M. P., Kohl-Schwartz, A., Geraedts, K., Rauchfuss, M., Woelfler, M. M., … & Leeners, B. (2019). Does endometriosis affect professional life? A matched case-control study in Switzerland, Germany and Austria. BMJ open, 9(1), e019570. Retrieved from https://bmjopen.bmj.com/content/9/1/e019570

Soliman, A. M., Rahal, Y., Robert, C., Defoy, I., Nisbet, P., Leyland, N., & Singh, S. (2021). Impact of endometriosis on fatigue and productivity impairment in a cross-sectional survey of Canadian Women. Journal of Obstetrics and Gynaecology Canada, 43(1), 10-18. Retrieved from https://doi.org/10.1016/j.jogc.2020.06.022

3 years ago Endometrioma , Endometriosis , Endometriosis Education 4 comments

Endometrioma 101: Understanding Deep Ovarian Endometriosis

Your Guide to Ovarian Endometrioma: Treatment, Symptoms, Doctors, Etc.

Endometrioma (deep ovarian endometriosis) can be difficult to treat due to controversies and challenges surrounding the best approaches, treatment, and diagnosis. Many of these hurdles result from misunderstandings about the condition and underlying disease process – deep ovarian endometriosis.

If you suffer from these ovarian endometriosis lesions, our sincere thoughts go out to you. Often known as “chocolate cysts,” some consider endometriomas as the most severe threat to a woman’s reproductive system (aside from cancerous tumors found in the reproductive tract). Furthermore, these lesions don’t always respond well to medical treatment and can potentially ruin the health of ovarian tissue. This article will help you understand endometrioma, symptoms, and deep ovarian endometriosis treatment.

What is Endometriomas (Deep Ovarian Endometriosis)? 

Endometriomas happen when endometrial-like tissue grows inside the ovary or sometimes outside. Endometrioma is very common and affects between 17-44% of endo patients. Endometriomas are typically an advanced form of endometriosis, meaning stage three or four.

Surgery is often necessary to remove the endometriomas. However, eliminating endometrioma cysts and capsules is an advanced procedure and needs excellent skills. This surgery can potentially lead to partial or complete loss of ovarian function, especially if done by less experienced surgeons. These cystic masses can cause extreme challenges for women undergoing fertility treatments, i.e., assisted reproductive technologies (ART).

Endometriomas are dark-fluid-filled cavities, and they can present in a variety of shapes and sizes. An ultrasound can show suspected cases of endometrioma, but confirmation needs surgery and histology. Therefore, getting a diagnosis of endometrioma can be riddled with challenges.

Recurrence of The Lesions Following Surgery

On our social media accounts, we receive many questions about the topic of endometrioma recurrence. We took to Instagram to get the responses from endometriosis specialists about this recurrence. Here are some of their responses:

• Dr. Jon Einarsson:

“It depends on several factors including the age of the patient, method of surgery, the experience of the surgeon, etc. In the literature, recurrence rates of over 30% have been reported, although I have personally not seen that high of recurrence risk.”

• Dr. Abhishek Mangeshikar:

“We’ve had ovarian recurrence rates of less than 10 percent in our two years of follow-ups of about 85 patients with ovarian endometriomas.”

“What’s important is to completely free the ovary and excise the peritoneum or uterosacral ligament it was adherent to, apart from excising the cyst. This will truly help reduce recurrence rates compared to just doing a cyst excision and leaving peritoneal disease behind.”

• Dr. Ram Cabrera:

“I share the same opinion, in my center, our recurrence rate is less than 8% a good technique and excision of all zone of endometrioma even peritoneal improve outcomes, also as previously said it depends on many factors like endometrioma size, multiple endometriomas, and post-op treatment.”

• Dr. Gabriel Mitroi:

“We have a very low recurrence rate. This is because often, during surgery, only the visible endometrioma cysts are removed. Anything under 2 cm is out of our visual field.”

Clinical Impact of Endometriomas (in Women of Reproductive Age)

Endometriomas does not cause infertility in all women it affects. However, studies show that between 25% to 50% of women with infertility have endometriosis, and 30% to 50% of women with endometriosis have infertility. However, that does not mean that endometrioma will necessarily cause infertility in women of reproductive age, especially when diagnosed and treated early with the best-practice treatments that have evolved over the years. 

One of the leading fertility challenges is that ovarian lesions affect the number of eggs in ovarian tissue. Endometrioma can also impair the maturation of the egg and cause the woman to have a lower antral follicle count (AFC) and Anti-Müllerian hormone (AMH). Also, women with endometriomas often have high follicle-stimulating hormone (FSH) levels.

Major Concerns:

• Intense pelvic pain
• Possible infertility
• Decrease ovarian function
• It can place women of child-bearing age at a higher risk of cancer

Treatment and Surgery Options

Treatment for endometriomas will vary from person to person. The number of lesions and the staging of the disease progress are just a couple of the factors that will influence the right treatment plan for you. 

Treatment for Females of Reproductive Ages

Many OB-GYNS and other healthcare providers still practice old treatments for endometriosis that don’t effectively manage the disorder. It’s a complicated condition. Thus, there are many myths and misconceptions about endometriosis. 

Women of reproductive ages who wish to maintain fertility should have a fertility specialist in their multidisciplinary endometriosis team. Women with endometriomas may respond to some of the following treatments: 

Non-surgical treatments: These treatment options are temporary choices to manage pain and complications in the short term.

• Medication therapy 
• Observation

Surgical treatment: this may include:

• Drainage
• Laser ablation
• Capsule excision (the procedure of choice for most top experts)

Final Thoughts and Question for Readers

Have you had to deal with endometrioma? If so, please share how it has impacted your endo journey.

3 years ago Endometriosis , Endometriosis Education

Finding an endometriosis specialist

Endometriosis often requires specialized care. Just as there are specialists such as endocrinologists, oncologists, rheumatologists, cardiovascular surgeons, orthopedic surgeons, and so on, there are specialists for endometriosis. Even within those specialties, there are subspecialties for even more specific disease processes. However, finding those elusive providers can be difficult.

When looking for an endometriosis specialist, it is important for you to understand about the disease yourself- which is why this website is in existence. Start at the beginning and work your way through the site. It is equally important to educate yourself on common diseases that occur with endometriosis and can cause similar symptoms. Treating one disease process (endometriosis) and not treating another (such as interstitial cystitis) can leave you with symptoms and questions as to why.

When looking at a surgeon for endometriosis, we have some resources to help you. Start with this article about Choosing Your Surgeon. Join our Facebook group to find other resources on endometriosis. Take a look at vetted surgeons who have chosen to refine their skills on endometriosis and have subspecialties in endometriosis surgery (bowel, thoracic, etc.) (https://icarebetter.com/).

Endometriosis can cause a lot of problems with our health and healing takes time and effort. It can take addressing multiple pain generators and mental health care.  Finding the right specialist/surgeon is an important first step on that journey towards better health.

3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist No comment

7 Ways to Prepare For First Endometriosis Specialist Appointment

Diagnosis. Treatment. Surgery. Many Topics May Be Discussed At Your Visit

An endometriosis specialist appointment is not something you do every day (although sometimes it might feel like all day while you’re waiting there). However, the time you get to talk with the doctor may be pretty short. During that moment of consultation with the endometriosis (endo) specialist, you might feel brain fogged or bombarded. Whether it’s the diagnosis, treatment, surgery, pain management, or an endometriosis symptom you want to bring up, it’s easy to forget an essential topic while you’re there.

To make the most out of your initial endometriosis specialist appointment with an endometriosis specialist, we’ve made a list of seven ways you can prepare for the visit. First, we will give a short description of what endometriosis is. 

Table of contents

What’s Endometriosis?

Why You Are Here

7 Ways to Prepare for Endometriosis Specialist Appointment

Endometriosis Care Process with iCareBetter

What’s Endometriosis?

Endometriosis is a female medical disorder in which tissue similar to the endometrium (tissue that lines the walls of the uterus) grows outside the uterus. This endometriosis tissue can grow on the surface of the uterus, ovaries, intestines, fallopian tubes, bladder, or other organs in the body.

During menstruation, this tissue releases blood, and it sloughs off. However, this blood and tissue often remain trapped with no way to escape the body. This increased pressure can result in moderate to severe pain, among other symptoms. If you want to learn more about endometriosis and get a general background on the condition, read our article, “Endometriosis 101: Covering the Basics.”

Why You Are Here

People of various ages and demographics are subject to this often debilitating inflammatory pelvic disorder. Whether you have confirmed the diagnosis of endometriosis or if you need surgery to verify its presence and remove lesions – these suggestions can help you prepare for the endometriosis specialist appointment. There are many stages of endometriosis. Whether you’ve got into a specialist early on your journey or later, the important thing is that you are here now – exploring treatment options.

7 Ways to Prepare for Endometriosis Specialist Appointment

Once you have found an experienced endometriosis specialist, it’s essential to prepare yourself for the doctor’s appointment ahead of time. There is no concrete test to diagnose endometriosis (outside of surgery). Therefore, it’s imperative to have a solid understanding of the signs and symptoms of endo and detailed accounts of your own experience ready. Simple things such as medical records or journals that list all your endometriosis symptoms are a vital arsenal that will help you and your doctor determine your treatment plan. 

1. Gather Your Records. 

Unfortunately, most people with endometriosis have had many doctor appointments before seeing an endometriosis specialist. Therefore, you should have some medical records for them to review during your first appointment with an endo specialist. Gather everything from your regular medical history from your general practitioner to your OB/GYN records, testing, imaging, blood work, etc. Even if you think the particular doctor appointment or medical history is insignificant, you might be surprised by the various conditions linked to endometriosis. Bring it all. This information could play a vital role in your endometriosis treatment. 

2. Keep a Journal of Endometriosis Symptoms/Pain.

Write down all the possible endo signs and symptoms you’ve had leading up to the doctor’s appointment. If you get a visit scheduled, and it’s a couple of weeks out, start the journal at that time, but also include the signs and symptoms you’ve experienced leading up to that point. Then, from that date until your appointment, write down all the different types of symptoms you experience. Include everything, even if you don’t think it’s relevant, like colds, headaches, stomach issues, shortness of breath, chest pain, etc. Also, be sure to include your emotions and feelings because endometriosis can significantly impact mental health and can lead to conditions such as depression and anxiety. Emotions and mental health are essential as you might want to include a counselor as part of your holistic endometriosis treatment team.

3. Bring This Printable Guide.

At endometriosis.org, they’ve created a convenient guide that can help you describe your symptoms and know what to ask your endometriosis specialist. Click here for the PDF. Please print it out and answer all the questions. Bring this with you to your doctor’s appointment to help specifically describe your endometriosis pain and other symptoms. 

4. Take All Your Medications With You. 

The importance of this cannot be understated. Even if you have a medication reconciliation (also known as a “med rec” for short) from your doctor, it’s important to realize those are not always up-to-date with everything you take. This inconsistency is especially true if you are on medications from multiple specialists or take supplements as well. The best way for your endo specialist to have a complete picture of all the medicines you are currently taking is by bringing them with you to the doctor’s appointment. You should include any supplements or over-the-counter medications. Bring in the physical bottles along with any medication history records.

5. Prepare Yourself Mentally. 

Go into the appointment with the bold mindset that you will ask every single question you have to gain clarity on your endometriosis diagnosis and treatment options. Endometriosis is an aggressive inflammatory disorder that can have a devastating impact on your quality of life. It would help if you carried an even more aggressive attitude toward trying to stop it dead in its tracks.

6. Bring a List of Questions.

What’s been bothering you the most? Pain? Bowel symptoms? Bring a list of all the important questions that you want answers to. Writing them down will help you not forget during the appointment. Furthermore, when the doctor sees you have a list of questions you want answers to, it makes it harder for them to get up and walk out of the room like the appointment is over. If something like that has ever happened to you, we are sorry you’ve experienced this. That’s why it’s crucial to find a vetted endometriosis expert.

7. Take a Support Person With You.

Finding a good endo expert is no easy task (unless you use iCareBetter to connect you to one). If you are the type of person who is a bit shy or feels intimidated, you should bring your best support person to the appointment with you. Even if you are not nervous about your first endometriosis specialist appointment, having someone you trust by your side can help you process the information and encourage you along your journey. If no one you would like to accompany you, consider bringing a recorder and taping the visit. Because this can help you go back later and make sure you’ve understood all the information. Most doctors will have no qualms about recording your visit.

Endometriosis Care Process with iCareBetter

1- Find an expert based on keyword/ specialty or state
2- choose your doctor from the list
3- Get the contact info
4- First call and consultation.
5- Get info regarding costs and care process
6- Receive care

We Want to Hear From You

Have you been to an endometriosis specialist (OB-GYN experienced in endo)? If so, is there anything you wished you would have done differently? If you’ve not been to an endo specialist yet, what is your biggest concern about the first doctor visit?

3 years ago Endometriosis , Endometriosis Education No comment

Endometriosis Myths & Facts: Dispelling the Misconceptions

Debunking the Myths About Endometriosis & Exploring the Facts

One in ten women worldwide is affected by endometriosis, also known as “endo,” for short. While this number is an estimate, the actual figures may be higher. Not only is the person with this inflammatory disorder affected, so are the family members and people around her due to the often debilitating effects of this disease. Endometriosis facts are important because it is complex and often misunderstood even though it’s a common disorder. Because of this, there are many myths and misconceptions regarding endometriosis prognosis, treatment, causes, symptoms, diagnosis, complications, etc. 

Focusing on the disease itself often ignores the vicious cycles of stress, fatigue, pain, doctor visits, flare-ups, and loss of productivity experienced by the patient. These factors can lead to a decreased quality of life. Worse is that endometriosis facts come behind outdated treatment options, myths, and misconceptions about this disorder. It takes an average of eight to ten years for a patient to be diagnosed with endometriosis. One of the biggest problems with the misconceptions about endo is that they can prevent women from seeking treatment. Keep reading as we review endometriosis facts and debunk the myths. 

Overview of Endometriosis 

Endometriosis is a pelvic disorder characterized by endometriosis tissue similar but not the same as the tissue inside the uterus, growing elsewhere. Typically, the growth occurs outside the uterus, ovaries, fallopian tubes, cervix, the surface of the bladder, bowel, and distant organs.

Endometriosis growths can cause pain, scarring, and sometimes infertility. Pain from endometriosis is usually the result of menstrual bleeding from the tissues. Unlike the endometrium inside your uterus, blood that comes from endo tissue outside this organ has no means of escaping the body. This blood causes increased pressure and inflammation, which can result in pain that’s often debilitating. If you would like to learn more information about endometriosis, please read our introduction article, “Endometriosis 101: Covering the Basics.”

Why is it Difficult to Diagnose Endometriosis?

Studies show that it can take an average of seven years or more for a woman to get an endometriosis diagnosis. Why is this? Endometriosis signs and symptoms are often similar to other conditions, such as irritable bowel syndrome or pelvic inflammatory disease (PID). Therefore, it’s often mistaken for another illness. Furthermore, the myths and misconceptions we discuss below also prevent a lot of women from seeking help. For this reason, it’s crucial to get the endometriosis facts clear. Keep reading as we debunk the myths and state the facts.

Myth #1: Severe Period Pain is Normal

Nineteenth-century doctors were often perplexed by “women’s problems.” As a result, women were often discounted as being unstable mentally. While the attitudes and thoughts have improved since, some of those old beliefs persist, including those regarding period pain.

Many patients with endometriosis hear that their severe period pain is “normal.” Pain and cramping are normal during menstruation. However, the pain should not be so intense that it interferes with functioning or impacts the quality of life. If your period pain is so severe that you cannot carry out daily activities, you should seek an endometriosis expert.

Myth #2: A Hysterectomy Cures Endometriosis

Endometriosis growths are tissues “similar” to those inside of the uterus. It is not the same tissue. Simply removing the uterus and/or ovaries without excising any endometriotic implants growing outside the uterus will not cure it. 

Myth #3: Endometriosis Only Affects the Pelvic Area

Locations within the pelvis, such as the surface of the uterus, bladder, or fallopian tubes, are the most common locations where endometriosis growths occur. However, endo can occur elsewhere in the body. In some cases, endometriosis growths have been present in distant organs, such as the lungs. 

Myth #4: Endometriosis Symptoms are Simply a “Heavy Period”

Bleeding during menstruation can be heavy at times. However, it should not exceed the saturation of a pad or tampon in one hour. If you experience that degree of bleeding, you should bring this up with your healthcare provider. The fact is that many women with endometriosis experience abnormally heavy flow due to the excess tissue.

Myth #5: Douching Causes Endometriosis

No scientific evidence links douching with the development of endometriosis.

Myth #6: Having an Abortion Can Cause Endometriosis

No scientific evidence demonstrates that having an abortion causes endometriosis. Those who claim otherwise might be confusing endometritis and endometriosis.

Myth #7: You’re Too Young to Have Endometriosis

A common misconception is that endometriosis is rare or doesn’t occur in young women and teenagers. As a result, many doctors do not consider an endometriosis diagnosis in young women with typical symptoms. Endometriosis facts demonstrate that teenagers and women in their early 20s can have the disorder. Most people with endometriosis state they experienced endo symptoms during adolescence. 

Myth #8: Endometriosis Can Be Prevented

It’s not clearly understood what causes endometriosis. Therefore, there are no proven ways to prevent this inflammatory condition. Anything else is purely speculation at this point.

Myth #9: Endometriosis is Always Painful

Not all women with endometriosis experience pain. Studies show that some women with advanced stages of endometriosis do not experience pain as a symptom.

Myth #10: Pregnancy is a Cure for Endometriosis

This misconception about endometriosis is slowly beginning to fade. However, not quickly enough! Pregnancy fluctuates hormones in the female body, which can temporarily suppress some symptoms of endometriosis. However, these symptoms usually recur for most patients following the pregnancy. Therefore, it’s not a cure.

Myth #11: Menopause Cures Endometriosis

Endometriosis symptoms often occur during menstruation, but many women experience them long after periods stop. Following menopause, the body still produces small amounts of hormones, and the endometriosis tissue still responds to them, thus causing pain. For many women, the symptoms of endometriosis may improve after menopause, but that does not mean it’s a cure. Depending on the case, it might be necessary to remove endometriosis implants or adhesions even after menopause. 

Myth #12: Hormonal Therapy Cures Endometriosis

Doctors have been treating endometriosis for years using hormonal therapy drugs. However, these medications do not have long-term effects on the disease itself. Hormones can help relieve the symptoms temporarily and even shrink the growths, but they do not cure endometriosis.

Myth #13: Endometriosis is Cancer

Endometriosis growths are not cancerous. To date, there is little evidence that shows endometriosis directly causes cancer. However, some types of cancers are more common in women who have endometriosis. Endometrial cancer is also known as uterine cancer. Many studies have examined the relationship between the two, and one showed that merely 0.7 percent of patients with endometriosis had endometrial cancer at the 10-year follow-up. Therefore, endometriosis does not equal cancer, but it may increase the risk of cancer.

Myth #14: Tubal Endometriosis Always Causes Infertility

Tubal endometriosis is not very common, and it does not always cause infertility. Does endometriosis cause infertility? It can be in many cases, but the mechanisms of infertility in endometriosis remain multifactorial. Can you get pregnant with endometriosis? It is possible, and many women do – especially with proper treatment early on.

Myth #15: Endometriosis Symptoms Are the Results of Emotional Distress (It Is All in Your Head)

Yes. People have heard many times that emotional distress could be the cause of their endometriosis and pain. This statement is false. The fact is, endometriosis is a highly complex disorder with many underpinnings. Those with endometriosis often experience emotional distress as an impact of the symptoms such as pain and infertility. But emotional distress it’s not the cause of endometriosis symptoms.

Endometriosis quick facts:

1- There is no blood test available for the diagnosis of endometriosis.

Mehedintu C, J Med Life, 2014

2- The diagnosis of endometriosis starts by taking a good history from patients, and performing a detailed physical exam including pelvic exam. In some cases, a doctor might ask for MRI and Ultrasound to have a more thorough picture. But the ultimate diagnosis is only possible with laparoscopic /robotic surgery and taking a biopsy for histopathology. There is no blood test that can tell if you have endometriosis.

3- Studies show that those with endometriosis have an increased risk of developing depression and anxiety disorders.

Chen LC, et al, J Affect Disord, 2016

4- Pelvic pain due to endo occurs a day part of an inflammatory cycle which can affect the pelvic organs and functions such as sitting, sex, bowel movements and even urination. Pelvic floor physical therapy can help with restoring balance to the pelvic floor muscles.

Dr. Juan Michelle Martin,  Endometriosis Physical Therapist.

5- “The most common clinical signs of endometriosis are menstrual irregularities, chronic pelvic pain, dysmenorrhea (painful periods), dyspareunia (painful sex), and infertility.”

Lagana AS, et al, Int J Womens Health. 2017

We Want Your Input

Are there any endometriosis myths or misconceptions we did not list here? Let us know in the comments below!

3 years ago Endometriosis , Endometriosis Education

Pelvic Congestion Syndrome- another cause of chronic pelvic pain

When talking about endometriosis and chronic pelvic pain, it is important to remember that often endometriosis is not the only pelvic pain generator. Another possible contributor to chronic pelvic pain is pelvic congestion syndrome (PCS). PCS is like having varicose veins in the pelvis. Blood pulls in the veins and can cause symptoms such as heaviness, pain with penetration, noncyclical pain, positional lower back pain, pelvic and upper thigh pain, prolonged postcoital discomfort, symptoms that worsen throughout the day and are exacerbated by activity or prolonged standing, and non-specific lower abdominal and pelvic pain (Durham & Machan, 2013; Mistry & le Roux, 2017). LIANG and Brown (2021) report that:

“Typical pelvic congestion syndrome pain is:

– Heaviness and dull aching in nature

– Located deep in the pelvis and on the left

– Exacerbated by upright position (standing or sitting) and exercise (walking, running, weightlifting)

– Worse towards the end of the day

– Worse after sexual intercourse

– Worse when bladder is full

– Chronic and insidious onset

Atypical pelvic congestion syndrome pain is:

– Constant pain not related to time of day, upright posture or physical activities

– Pain worse premenstrually and during menstrual periods

– More on the right than the left

– Acute and sudden onset

– Sharp or colicky in nature”

While the gold standard for diagnosis is contrast venogram, this procedure is usually done as part of the treatment (embolization procedure) (LIANG & Brown, 2021). LIANG and Brown (2021) report that “all non-invasive imaging like ultrasound, CT and MRI can detect pelvic varicosities” but that the key is “to alert the imaging technicians and specialist to look out for pelvic varicosities and to report them” (LIANG & Brown, 2021). A CT scan can also help diagnose other syndromes such as Nutcracker Syndrome (left renal vein compression) and May-Thurner Syndrome (left iliac vein compression) (LIANG & Brown, 2021). If you’ve had surgeries before for endometriosis and wonder why it wasn’t seen during surgery, it is because surgery “is performed with the patient in supine or Trendelenburg position, and with the use of CO2 for abdominal distention” thus meaning that the “veins are often collapsed, and pelvic varicosities can be missed”- it would take the surgeon who suspects pelvic varicosities to put the patient in “reverse Trendelenburg position and easing off CO2 distention” that “might allow the dilated veins to fill” and possibly be seen (LIANG & Brown, 2021).

Unfortunately, PCS doesn’t just go away or improve with time, therefore, treatment is usually needed for those who are symptomatic (LIANG & Brown, 2021). Because there is pooling and back flow of blood in the veins, the treatment suggested is transcatheter embolization (LIANG & Brown, 2021).  Medication, hysterectomy, and other treatments have not proved as effective (LIANG & Brown, 2021). The transcatheter embolization “is performed with conscious sedation under local anaesthetic, as a day procedure” and “is one of the safest embolisation procedures” (LIANG & Brown, 2021). LIANG and Brown (2021) report that “some feel the relief of pelvic congestion syndrome symptoms soon after embolisation, while others might have to wait for the thrombophlebitis to settle before appreciating the result”- reporting that it is best to wait 4-6 weeks to better judge the effectiveness. Mistry & le Roux (2017) report that after looking at 20 studies that “the overall technical success rate was as high as 99%” and that “with a mean follow up of 15 months, 80% of the patients reported benefit from the procedure while 13% experienced little or no relief of the symptoms”.

PCS may be another piece in the puzzle of ongoing chronic pelvic pain.

References

Durham, J. D., & Machan, L. (2013, December). Pelvic congestion syndrome. In Seminars in interventional radiology (Vol. 30, No. 04, pp. 372-380). Thieme Medical Publishers. Retrieved from https://www.thieme-connect.com/products/ejournals/html/10.1055/s-0033-1359731  

LIANG, D. E., & Brown, B. (2021). Pelvic congestion syndrome: Are we missing the diagnosis?. The Medical Republic. Retrieved from https://www.sydneyfibroidclinic.com.au/app/uploads/2021/06/PCS-Medical-Republic.pdf

Mistry, P. P., & le Roux, D. A. (2017). Pelvic congestion syndrome (PCS). Practice Perspectives for Venous Disorders, 46. Retrieved from http://www.vascularsociety.co.za/wp-content/uploads/2019/02/VASSA-venous-guidelines-Practice-perspectives-for-venous-disorders-2017.pdf#page=46

3 years ago Endometriosis , Endometriosis Education No comment

A Multidisciplinary Team for Endometriosis is Key to Positive Outcomes

Why Your Endometriosis Treatment Plan Should be Multidisciplinary

Endometriosis (endo) is a chronic and progressive disorder characterized by the growth of endometriosis tissue outside the uterus. This disorder often affects various organs in the body and results in pain and other issues. In addition to the intense physical and often debilitating symptoms of the disease, it can also take a toll on mental and spiritual health. Therefore, a multidisciplinary team (MDT) approach to endometriosis pain, surgery, and disease management leads to the best outcomes for patients. Keep reading to learn how.

What is Endometriosis?

Pronounced (en-doe-me-tree-O-sis), endometriosis is a chronic inflammatory disorder in which a type of tissue that is similar to the endometrial tissue that normally grows inside the uterus, grows outside this organ. Sometimes, the endometriosis tissue appears on the outer side of the uterus. These lesions can also grow on the ovaries, fallopian tubes, bladder wall, and on the outside of other organs within the pelvic cavity and other regions of the body.

Endometriosis is often a very painful and debilitating disease. During menstruation, these endometriosis growths shed blood into the body which is not able to be released. This causes an increase in pressure throughout the pelvic and sometimes abdominal region. Endo often involves other organs such as the bowels, ovaries, fallopian tubes, vagina, and cervix. In rare cases, it may affect other organs, such as the bladder, lungs, diaphragm, or kidneys. If you would like to learn more information about endometriosis, read our article, “Endometriosis 101: Covering the Basics”.

What is a Multidisciplinary Team Approach in Medicine?

Multidisciplinary care is when multiple members of the healthcare team come together to collaborate to provide optimal care for a patient. When it comes to endometriosis treatment, it’s important to involve various disciplines across the healthcare spectrum to achieve the best possible outcomes for patients.

Benefits of a Multidisciplinary Treatment (MDT) Team for Endometriosis

Draw in endo experts across different care areas to enhance the patient’s prospects and outcomes. Physicians benefit from this approach as they are able to provide a better framework for decision-making on a collaborative level and implementation. These aspects are particularly important when dealing with complex endometriosis cases. When several endo experts work together in unison, the benefits include cross-discipline learning, research, and review.

There is a type of disease, called deep infiltrating endometriosis (DIE). Alarmingly, about 20 percent of endo patients have this type. With DIE, the lesions can penetrate 5 mm deep into the organs affected by the disorder. A multidisciplinary treatment plan is the best approach for better outcomes and improved quality of life for the patient. The resection of DIE lesions requires a surgeon with expertise in endometriosis and a multidisciplinary approach coordinated by the endo specialist.

In fact, in 2019, the Society for Women’s Health Research assembled a team of clinicians, researchers, and patients to deliberate on the barriers in the commonly accepted forms of endometriosis treatment and management. The team underscored the importance of comprehensive and interdisciplinary approaches to disease and pain management for proper treatment and diagnosis.

Who comprises an Endometriosis Multidisciplinary Team?

The following are some of the endometriosis experts that come together and help treat patients holistically:

Endometriosis Surgeon (Gynecologist): 

If you have endometriosis, a regular obstetrics-gynecological surgeon is not going to suffice. It’s important to have an endometriosis specialist, who is an OB surgeon with experience in the treatment of this pelvic disease. An endometriosis laparoscopy is often needed to diagnose and treat the disease. It’s important to choose a surgeon familiar with endo to ensure all lesions are removed. Learn more about endometriosis specialists and how to find a vetted physician in our article here.

Colorectal Surgeon (Bowel Surgeon): 

If the endometriosis affects the bowel, surgical excision may be necessary to remove the lesions. Surgical treatment, such as full-thickness disc excision or a bowel resection should only be performed by an experienced colorectal surgeon. This physician will participate in the care from the diagnostic workup to surgical treatment and follow-up care.

Urologist (Genitourinary Tract Doctor): 

A urologist treats disorders of the urethra, kidneys, urinary bladder, and adrenal glands. Having an experienced urologist as part of your multidisciplinary team can help aid in the treatment of ureter and bladder lesions as well as minimize kidney or bladder complications.

Radiologist Experienced in Endometriosis: 

Endometriosis may have several presentations, which can make diagnostic testing challenging. Because endometriosis lesions can present in other areas of the body away from the reproductive organs, it’s important that the radiologist on your team is familiar with the pelvic nerve anatomy and how to detect signs of neural endometriosis.

Physical Therapist/Pelvic Floor Therapist: 

Physical therapy can be very important in the treatment of endometriosis. While some patients may require physical therapy to help them adapt to pain and stay mobile, others may need highly specific pelvic floor therapy. A pelvic floor physical therapist can work with the patient to help reduce adhesions and scar tissue which can limit pelvic floor extensibility. These exercises are important to help reduce pain sometimes associated with intercourse or the insertion of a tampon.

Pain Management Doctor: 

Endometriosis pain is often the primary complaint and most debilitating symptom of this disease. In fact, it’s not uncommon for the pain associated with endo to become so intense that a person is no longer able to function in daily life. For this reason, a pain management doctor should be a part of the team to improve functioning and overall quality of life.

Psychiatrist/Psychologist: 

Anxiety and depression are two of the biggest mental health disorders that often accompany endometriosis. Furthermore, the pain and sometimes infertility that come with this disorder can further aggravate these negative emotions. Therefore, a holistic MDT for endometriosis will include a psychiatrist or psychologist, possibly one who specializes in pain management.

Nutritionist: 

Nutrition plays a key role in the processes and regulation of your digestive and immune systems. A proper endometriosis diet can help to reduce the chronic inflammation that keeps the endometriosis lesions growing and spreading. A nutritionist with experience in treating endo patients is key for successful outcomes. 

Pathologist: 

There are different stages and types of endometriosis. Endometriosis with architectural atypia is one type that may be a precursor of ovarian cancer. Therefore, it’s important that a pathologist carefully examines the lesions to discover if they could be indicative of endometriosis-associated ovarian cancer.

Building Your Multidisciplinary Team for Endometriosis

Who’s got your back? If you have or suspect you might have endometriosis, this is a very important question to ask yourself. iCareBetter is a digital platform that connects endo patients to vetted endometriosis experts across a variety of disciplines. If you have endo, we want to hear from you. Do you already have an MDT for endo? If so, who are the members of your personal team?

3 years ago Endometriosis , Endometriosis Education No comment

How Do I Know If I Have Endometriosis? Endometriosis Signs

Learn Endometriosis Signs & Symptoms & What to Tell Your Doctor

Pelvic pain is common for most women during their period. However, for some – this time of the month comes with excruciating pain due to the medical condition – endometriosis (also known as endo for short). Believe it or not, endometriosis signs extend beyond just the debilitating pain, although, that’s the hallmark symptom of this inflammatory disorder.

If you think you might have endometriosis, it’s important to have a solid foundation of information before you see your doctor for a possible endo diagnosis. Keep reading to learn what endometriosis is and what are the most common signs and symptoms of this condition.

What Is Endometriosis?

Pronounced (en-doe-me-tree-O-sis), endometriosis is a chronic inflammatory disorder of the pelvis where tissue similar to that normally grows inside your uterus, grows elsewhere instead, usually on the outside of it. The endometriosis tissue can block fallopian tubes, cover your ovaries, and even line the organs of your pelvis. 

Endometriosis can cause intense pain and fatigue, which makes it a disabling inflammatory condition for many women. Pain from endometriosis can be so intense that sometimes even medication cannot touch it. Other organs commonly involved include the fallopian tubes, bowels, cervix, ovaries, vagina, and pelvic tissue. Rarely, endo may also affect distant organs. Learn more about the disorder in our previous article, “Endometriosis 101: Covering the Basics”.

What Are Endometriosis Signs and Symptoms?

Sadly, endometriosis is an inflammatory disorder that often goes undiagnosed for years because the hallmark symptoms are things that some women take for granted as “normal”: heavy bleeding and pain during periods. If you think you might have endometriosis, it’s important that you know what to look for and when you should notify a doctor. The following are seven common signs of endometriosis:

Dysmenorrhea (Painful Periods): 

Intense pelvic or abdominal pain is one of the most common symptoms of endometriosis. Endometriosis pain is often described as a sharp or stabbing sensation. During menstruation, women with endo may experience very painful periods because the endometrial tissue swells and bleeds every month, just like the uterine lining would. However, because this process is occurring outside the uterus, blood is not easily shed, and this pressure can cause extreme cramping that is much more intense than typical period cramps. Period pain should not disrupt your daily life, so if it does, you need to let your doctor know or find a qualified endo specialist.

Menorrhagia (heavy menstrual bleeding): 

While many women bleed heavily during their period, endometriosis can cause significant blood loss. How do you know if your amount of bleeding is excessive? Watch for these signs:

1. Passing large clots
2. Period goes on longer than a week
3. Bleeding through a pad or tampon in an hour
4. Too fatigued to carry out daily activities

If you have these symptoms, you may have menorrhagia and should contact a gynecologist. Menorrhagia is sometimes caused by endometriosis, and it can cause anemia and severe fatigue.

Dyspareunia (pain during or after intercourse): 

When endometriosis is the cause of painful intercourse, the woman may not experience the pain upon entry, only upon deep penetration. There can be physical and psychological causes of this condition, and endometriosis may be the culprit, as tissue builds up on the other side of the lower uterus or vagina – and sexual intercourse can stretch the tissue. You should talk to an experienced physician if you have pain during or after intercourse.

Chronic Pelvic Pain: 

While the inflammatory condition usually involves pain during menstruation, endometriosis pain can occur at any time of the month. Endometriosis causes an increase in pressure due to the excessive tissue in the pelvic cavity. This can cause a chronic pain condition that might be felt exclusively in the pelvis or manifest as abdominal or back pain. 

Ovarian Cysts: 

There is a type of endometriosis that causes endometriomas (also known as chocolate cysts) to grow on your ovaries. These cysts are non-cancerous but may become large and painful. Also, women who have these may also have other endometrial growths in the abdominal or pelvic areas. 

Infertility: 

Up to about half of women who have problems with fertility also have endometriosis. Furthermore, up to 50 percent of women who have endometriosis are unable to get or stay pregnant. The relationship between these conditions isn’t always clear as many factors can impact fertility. However, in the event that the endometriosis tissue blocks the reproductive organs, there is a clear connection. Treating the condition can increase your odds of having a baby. If these fertility issues are affecting you, contact an endometriosis specialist. 

Bowel/Bladder Problems: 

Bathroom visits may be problematic if you have endometriosis lesions growing near your bladder or bowels. And if you are experiencing difficulty with urination or bowel movements or bleeding in the bowel – these may be signs of endometriosis. Also, if you have painful urination, blood in your stool, nausea, or hyper urgency to urinate – you should tell your medical provider immediately. 

When to Call Your Healthcare Provider

Share with your healthcare provider any of the following endometriosis signs and symptoms:

• Pain. Pain is the most common sign of endometriosis, and it can be present:
  • During or after sex
  • With bowel movements
  • When urinating during your period
  • As chronic abdominal, lower back, or intestinal pain
  • Similar to menstrual cramps that get worse gradually
• Bleeding or spotting between periods
• Difficulty getting pregnant or infertility
• Digestive issues or stomach problems such as diarrhea, constipation, bloating, or nausea—especially during your periods

3 years ago Endometriosis , Endometriosis Education

Genes associated with endometriosis

It’s an exciting title: “Genetic cause of endometriosis discovered, pointing to new drug therapy” (Haridy, 2021). But it is misleading. When you look further, it reveals it is referencing a study (Tapmeier et al., 2020) that identified “a novel genetic variant that is associated with severe cases of endometriosis” (Haridy, 2021). The article further states that “NPSR1 mutations have never before been linked with endometriosis” but “they have, however, been associated with inflammatory diseases including arthritis, inflammatory bowel disease and asthma” (Haridy, 2021). This gene was noted in endometriosis patients in a 2016 study that identified several genes associated with endometriosis (Houshdaran et al., 2016). The article also notes “not every woman with endometriosis was found to have this particular NPSR1 variant, affirming the heterogenous nature of the condition” and that the gene has a “potential role in endometriosis” that “points to the development of anti-inflammatory therapeutics targeting this mechanism” (Haridy, 2021).

We know there is a genetic component to endometriosis; however, a single gene has not been identified as the cause. This study notes that this particular gene is associated with stage III/IV endometriosis and with other inflammatory conditions. The research is identifying new potential drug targets to help with symptoms.

Genetics account for about 50% of the risk for endometriosis with the other 50% “likely owing to environmental factors” (Montgomery et al., 2020). “As with other complex diseases, genetic variants in the DNA sequence increasing endometriosis risk all have small effects, unlike most single-gene disorders” and “it is the combinations of these variants adding together that contribute to higher risks for individual women” (Montgomery et al., 2020). The science of epigenetics should also be considered.

Epigenetics is “the study of biological mechanisms that will switch genes on and off” (What Is Epigenetics, 2019). Epigenetics can be influenced by almost everything: “what you eat, where you live, who you interact with, when you sleep, how you exercise, even aging – all of these can eventually cause chemical modifications around the genes that will turn those genes on or off over time” (What Is Epigenetics, 2019). Epigenetics involved with endometriosis might include “DNA methylation and histone modification, and, other non-classic mechanisms: miRNAs and lncRNA” (Chen et al., 2020). “Increased estrogen activity and progesterone resistance are the main hormonal substrate of this disease and are associated with inflammatory response and debilitating symptoms, including pain and infertility….The regulation of receptor expression by epigenetics maybe a critical factor for endometriosis” (Chen et al., 2020).

In short, endometriosis is pretty complicated and we still have much to learn.

References

Chen, H., Malentacchi, F., Fambrini, M., Harrath, A. H., Huang, H., & Petraglia, F. (2020). Epigenetics of estrogen and progesterone receptors in endometriosis. Reproductive Sciences, 1-8. Retrieved from https://link.springer.com/article/10.1007/s43032-020-00226-2

Haridy, R. (2021). Genetic cause of endometriosis discovered, pointing to new drug therapy. Retrieved from https://newatlas.com/science/genetic-cause-endometriosis-inflammation-new-drug-therapy/

Houshdaran, S., Nezhat, C. R., Vo, K. C., Zelenko, Z., Irwin, J. C., & Giudice, L. C. (2016). Aberrant endometrial DNA methylome and associated gene expression in women with endometriosis. Biology of reproduction, 95(5), 93-1. Retrieved from https://doi.org/10.1095/biolreprod.116.140434

Montgomery, G. W., Mortlock, S., & Giudice, L. C. (2020). Should genetics now be considered the pre-eminent etiologic factor in endometriosis?. Journal of minimally invasive gynecology, 27(2), 280-286. Retrieved from https://doi.org/10.1016/j.jmig.2019.10.020

Tapmeier, T. T., Rahmioglu, N., Lin, J., Obendorf, M., de Leo, B., Montgomery, G., … & Zondervan, K. T. (2020). Neuropeptide S Receptor 1 is a Novel Non-Hormonal Treatment Target in Endometriosis. Reproductive Sciences, 27(SUPPL 1), 130A-130A. Retrieved from https://stm.sciencemag.org/content/13/608/eabd6469

What Is Epigenetics. (2019). A Super Brief and Basic Explanation of Epigenetics for Total Beginners. Retrieved from https://www.whatisepigenetics.com/what-is-epigenetics/

3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist 9 comments

Endometriosis Specialist For Diagnosis, Treatment, & Surgery

Why Is It Crucial for Your OB-GYN to Be an Endometriosis Specialist?

When it comes to the treatment and management of endometriosis pain and/or other symptoms, all doctors are not the same. In fact, if you have or suspect you might have endometriosis, you may be left disappointed with the answers (or lack thereof) you receive from a general obstetrician/gynecologist (OB-GYN). 

It can be a bit tricky to find an endometriosis specialist who is highly skilled and follows the best endometriosis treatment and management practices for this disorder. If you want to learn more about endometriosis, read this article that gives an introduction to the condition, signs and symptoms, causes, complications, and treatments.

With so many myths about endometriosis (endo), it’s important to separate facts from fiction. Arm yourself with research and a solid foundation of knowledge to help you simplify the process and get in touch with a trusted endometriosis specialist. Keep reading to find out why it’s so important to use an endo expert, red flags that your doctor/surgeon is not the right fit, and how to find an endometriosis specialist near you.

Join the endometriosis forum or Instagram page and discover endometriosis stories and discussions.

Understanding Endometriosis: An Overview

Endometriosis, a perplexing and often debilitating condition, affects a significant number of people assigned females at birth, primarily during their reproductive years. It occurs when endometrial-like tissue, which typically lines the uterus, implants and grows outside the uterine cavity. These lesions can have debilitating effects on the body, mediated by estrogen, they produce inflammation and can create structural changes due to scarring and adhesions, ultimately contributing to chronic pelvic pain and, in some cases, infertility. 

Endometriosis is a primary contributor to infertility among women, as the tissue implants can interfere with ovarian function or obstruct the fallopian tubes. In severe cases, the tissue may even spread beyond the pelvic region, affecting other organs. While the exact cause remains elusive, researchers have proposed theories involving retrograde menstruation, genetic predispositions, and immune system dysfunction.

Symptoms: Recognizing the Signs

The symptoms of endometriosis can vary widely among individuals, ranging from mild discomfort to severe, debilitating pain. Common manifestations include:

• Pelvic or lower back pain during menstrual periods
• Painful intercourse
• Abnormally heavy or prolonged menstrual bleeding
• Infertility
• Fatigue
• Painful urination or bowel movements during menstruation
• Digestive issues like diarrhea, constipation, or nausea

If you experience persistent or worsening symptoms, it is crucial to seek medical attention promptly.

The Diagnostic Journey: Unveiling Endometriosis

Diagnosing endometriosis can be challenging, as the symptoms may mimic those of other conditions. Your healthcare provider will typically begin by reviewing your medical history and performing a physical and pelvic examination. However, a definitive diagnosis often requires a laparoscopic procedure.

During a laparoscopy, a thin, lighted instrument called a laparoscope is inserted through a small incision in the abdominal wall, allowing the surgeon to visualize the pelvic area and identify any endometrial tissue implants. In some cases, a biopsy may be performed to confirm the diagnosis.

Additional tests, such as ultrasounds, CT scans, or MRI scans, may be ordered to assess the extent and location of the endometrial lesions, particularly if deep infiltrating endometriosis (DIE) is suspected, where the tissue grows into surrounding organs like the bowel or bladder.

The Pivotal Role of Endometriosis Specialists

While general gynecologists can provide initial evaluations and basic treatment options, endometriosis specialists are uniquely qualified to manage this complex condition effectively. The right specialist will have extensive knowledge of this disorder and the additional surgical training and skills it takes to effectively treat endo and related conditions. These specialists, typically obstetrician-gynecologists (OB/GYNs) or reproductive endocrinologists, possess extensive knowledge and surgical expertise in treating endometriosis and related conditions.

Endometriosis specialists are trained to utilize advanced surgical techniques, such as laparoscopic or robotically assisted procedures, to meticulously remove endometrial lesions and scar tissue. They have access to state-of-the-art equipment and a comprehensive understanding of various treatment modalities, including hormonal therapies, pain management strategies, and complementary approaches.

Moreover, these specialists often collaborate with a multidisciplinary team of professionals, including colorectal surgeons, urologists, pain management specialists, and mental health professionals, to provide holistic care tailored to each patient’s unique needs. The  openness to complementary treatments and a thorough understanding of various treatments are some other advantages of choosing an endometriosis expert and not just a regular OBGYN.

Red Flags About a Potential Endometriosis Expert

It’s important that you pick an expert who knows what they’re doing to support you. Unfortunately, there are a lot of myths surrounding surgical best practices when it comes to endo treatment. What’s even worse is that some of these options could result in infertility or other issues, and not even address the underlying endometriosis condition.

The following are red flags that could indicate the doctor you are speaking with is not a trusted endometriosis specialist:

• If the doctor views hysterectomy as a definitive treatment. Caution any doctor who says removing your uterus/ovaries will cure you. While this may be the correct course for some patients, it’s not a cure-all solution as endo lesions can affect other body parts and endo tissue could continue to grow.

• If the doctor says endo symptoms will go away with menopause. In medically, naturally, and surgically-induced menopause, there are women who have endometriosis afterward.

• If the doctor says mild stages of endometriosis won’t cause infertility. This is just false. “Mild” or “minimal” stages of endo can still produce significant symptoms, including those that impact fertility.

• If the doctor says that negative tests rule out an endo diagnosis. Tests such as labs, ultrasound, or magnetic resonance imaging (MRI) can help with the diagnosis and staging of endometriosis, but they cannot rule it out. Technology has advanced, and transvaginal ultrasound can help in assessing and staging endometriosis; however, it cannot rule out the diagnosis. The same is true for MRIs and laboratory studies.

• Hormone therapy will cure endometriosis. Studies show that hormonal medications may help temporarily reduce endometrial lesions (possibly) and manage symptoms, but they do not cure the disease.

• If the doctor suggests that recurring endometriosis cannot be treated.

• If the doctor tells you that you are too young to have endometriosis. This belief is completely false. In fact, there are adolescents who had chronic pelvic pain that were diagnosed with deep infiltrating endometriosis (DIE). 

• If the doctor suggests it’s only irritating bowel syndrome (IBS). Many symptoms of endometriosis and IBS overlap. As such, this is often a misdiagnosis given to people who, in fact, are suffering from endometriosis. Please notice that this doesn’t mean that the patient doesn’t also have IBS in conjunction with endo.

Treatment Options: A Comprehensive Approach

The treatment approach for endometriosis is highly individualized, taking into account factors such as symptom severity, fertility goals, and overall health status. Endometriosis specialists typically employ a combination of medical and surgical interventions to alleviate symptoms and address underlying issues.

Medical Management

For individuals not actively seeking pregnancy, hormonal therapies are often the first line of treatment. These medications aim to suppress ovarian function and manage symptoms of endometriosis.  Common options include:

• Combined hormonal contraceptives (birth control pills, patches, rings, or injections)
• Gonadotropin-releasing hormone (GnRH) agonists or antagonists
• Progestin therapy (levonorgestrel-releasing intrauterine devices, contraceptive implants, or oral progestins)
• Aromatase inhibitors (in combination with other hormonal therapies)

While these medications can effectively manage symptoms for some, they are not curative and may have side effects such as hot flashes, vaginal dryness, or bone loss. Endometriosis specialists can guide patients through the potential risks and benefits of each option.

In cases of severe pain or discomfort, nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen or naproxen may be recommended for pain relief, either alone or in conjunction with hormonal therapies.

Surgical Intervention

The gold standard for diagnosing endometriosis is laparoscopic surgery with histological diagnosis. Meaning, that during surgery, you are diagnosed, and when the lesions are removed, they are sent to a pathologist who will confirm the diagnosis. Ideally, a proper excision surgery should be performed at the same time as the diagnosis. Endometriosis specialists are trained in various surgical techniques, ranging from minimally invasive laparoscopic procedures to more extensive open surgeries, depending on the severity of the endometriosis and the training they’ve had. 

Laparoscopic surgery, often referred to as “conservative surgery,” aims to preserve the uterus and ovaries while removing endometriosis lesions, adhesions, and scar tissue. This approach can improve fertility outcomes and alleviate pain, but endometriosis may recur over time. However, in some cases, a hysterectomy may be performed laparoscopically in addition to endometriosis excision if there are other concerns, such as adenomyosis, and fertility is not desired. 

Complementary Therapies

In addition to traditional medical and surgical treatments, endometriosis specialists may recommend complementary therapies to manage pain and improve overall well-being. These may include:

• Physical therapy to relax pelvic floor muscles and alleviate pelvic pain
• Acupuncture, which has shown promising results in reducing endometriosis-related pain
• Dietary modifications and supplements (e.g., omega-3 fatty acids, magnesium)
• Mind-body practices like meditation, yoga, or cognitive-behavioral therapy to reduce stress and improve coping mechanisms

It is essential to discuss any complementary therapies with your healthcare provider to ensure they are safe and appropriate for your individual situation.

Seeking Fertility Treatment

For women with endometriosis who are struggling to conceive, endometriosis specialists can collaborate with reproductive endocrinologists to develop a comprehensive fertility treatment plan. Options may include ovulation-inducing medications, intrauterine insemination (IUI), or in vitro fertilization (IVF).

IVF, in particular, has shown promising results for women with endometriosis, as it bypasses potential obstacles caused by the condition, such as blocked fallopian tubes or impaired ovarian function. Endometriosis specialists can provide guidance on the most appropriate fertility treatment based on the individual’s age, severity of endometriosis, and overall health status and recommend a tailored treatment plan as to when would be the most ideal time for these types of treatments.

Finding the Right Endometriosis Specialist

Choosing the right endometriosis specialist is crucial for effective diagnosis and treatment. When seeking a specialist, consider the following factors:

• Experience: Look for specialists who have extensive experience in treating endometriosis and related conditions, particularly in performing advanced surgical techniques.
• Qualifications: Endometriosis specialists should be board-certified OB/GYNs or reproductive endocrinologists with specialized training in endometriosis management and specialized in treating fertility problems.
• Communication and rapport: A good specialist should actively listen to your concerns, explain treatment options in clear and understandable terms, and foster a collaborative relationship.
• Multidisciplinary approach: Specialists who work closely with other healthcare professionals, such as colorectal surgeons, pain management specialists, and mental health professionals, can provide more comprehensive care.
• Accessibility: Consider the specialist’s location, availability, and affiliation with reputable medical centers or hospitals that regularly treat endometriosis.

Additionally, seeking recommendations from trusted sources, such as support groups, online forums, or your primary care physician, can aid in finding a qualified endometriosis specialist in your area.

Endometriosis Support and Resources

Living with endometriosis can be physically and emotionally challenging. Seeking support from others who understand the condition’s impact can be invaluable. Consider joining a local or online support group where you can share experiences, receive practical advice, and find a sense of community.

Additionally, numerous reputable organizations and websites offer educational resources, up-to-date research findings, and support services for individuals with endometriosis. These resources can empower you with knowledge and provide guidance throughout your journey.

Conclusion: Embracing Hope and Empowerment

Endometriosis is a complex condition that requires specialized care and a multifaceted approach to treatment. By partnering with an experienced endometriosis specialist, you can navigate the diagnostic process, explore various treatment options, and develop a personalized plan tailored to your specific needs and goals.

While the journey may be challenging, embracing a proactive and informed approach can empower you to take control of your health and improve your overall quality of life. With the right support and guidance, it is possible to manage endometriosis effectively and find relief from its debilitating symptoms.

Remember, you are not alone in this journey. By seeking out knowledgeable healthcare professionals, connecting with supportive communities, and advocating for your well-being, you can overcome the obstacles posed by endometriosis and reclaim your vitality.

 

REFERENCES : 

https://icarebetter.com/endometriosis-specialist-for-diagnosis-treatment-surgery/

https://nyulangone.org/care-services/endometriosis-center

https://www.endofound.org/preparing-to-see-a-doctor

https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661

https://www.uwmedicine.org/conditions-symptoms/reproductive-sex-organs/endometriosis

 

 

3 years ago Endometriosis , Endometriosis Education

What a Pain! Vaginismus, Vulvodynia, and More

Endometriosis can have a cascade effect on the muscles, fascia, and nerves of the pelvis. Myofascial pain is involved in up to 94% of chronic pelvic pain and can occur “independently or in conjunction with disorders such as vaginismus, dysmenorrhea, and endometriosis and is frequently a causative factor in sexual pain or dyspareunia” (Ross et al., 2021). Vaginismus, vulvodynia, and pudendal neuralgia are a few of things that can contribute to chronic pelvic pain.

Vaginismus is the “recurrent involuntary tightening of muscles around the vagina” (spasms) whenever penetration is attempted- such as “the use of tampons, penetrative intercourse, cervical examinations, and other activities” (Haire, 2021). Phenomena such as endometriosis, recurrent bladder infections (or painful bladder syndrome), yeast infections, hormonal changes (such as decreased lubrication with menopause) are a few of the things that might trigger it (HealthDirect, 2019). Therapies might include pelvic floor physiotherapy, local anesthetics (such as lidocaine), muscle relaxants (such as medications/creams or even botulinum toxin injections), and/or anxiolytic medication (Lahaie et al., 2010).

Vulvodynia is “chronic discomfort in the vulvar region” (Reed, 2006). The pain has been “described as ‘burning,’ but it may be irritating, sharp, prickly, or, occasionally, pruritic, and it can be mild to severe” (Reed, 2006) (pruritic meaning itching). Reed (2006) also reports that “the pain can begin suddenly when provoked, and it tends to dissipate gradually; women with vulvodynia often report hours to days of discomfort after intercourse or a pelvic examination.” The pain with vulvodynia can be exacerbated by prolonged sitting, tight clothes, riding a bike, use of tampons, or intercourse (Reed, 2006). Vulvodynia might be contributed to by “injury to, or irritation of, the nerves that transmit pain from the vulva to the spinal cord, an increase in the number and sensitivity of pain-sensing nerve fibers in the vulva, elevated levels of inflammatory substances in the vulva, an abnormal response of different types of vulvar cells to environmental factors such as infection or trauma, genetic susceptibility to chronic vestibular inflammation, chronic widespread pain and/or inability to combat infection, or pelvic floor muscle weakness, spasm or instability” (National Vulvodynia Association, n.d.). The National Vulvodynia Association has good information on treatment options here:  https://www.nva.org/what-is-vulvodynia/treatment/.

Another entity associated with pain in the pelvic region is pudendal neuralgia. This is “a painful condition caused by inflammation, compression or entrapment of the pudendal nerve; it may be related to or be secondary to childbirth, pelvic surgery, intense cycling, sacroiliac skeletal abnormalities or age-related changes” (Perez-Lopez & Hita-Contreras, 2014). Symptoms usually present with “pelvic pain with sitting which increases throughout the day and decreases with standing or lying down, sexual dysfunction and difficulty with urination and/or defecation” (Perez-Lopez & Hita-Contreras, 2014). Treatment options might include “physiotherapy, analgesics and nerve block, surgical pudendal nerve decompression, radiofrequency and spinal cord stimulation” (Perez-Lopez & Hita-Contreras, 2014).

The pelvic floor is a busy highway of muscles, nerves, ligaments, blood vessels (see Pelvic Congestion Syndrome), and more. There is a lot that can contribute to chronic pelvic pain, and it is important to address all the factors that might be contributing to it. You can find more information here:

• https://icarebetter.com/pudendal-neuralgia-vulvodynia/
• https://icarebetter.com/pelvic-floor-dysfunction

References

Haire, G. (2021). When the Body Says No: The Experience of Vaginismus and the Validity of Female Pain. Brief Encounters. Retrieved from https://kar.kent.ac.uk/89429/1/document.pdf

HealthDirect. (2019). Vaginismus. Retrieved from https://www.healthdirect.gov.au/vaginismus

Lahaie, M. A., Boyer, S. C., Amsel, R., Khalifé, S., & Binik, Y. M. (2010). Vaginismus: a review of the literature on the classification/diagnosis, etiology and treatment. Women’s Health, 6(5), 705-719. Retrieved from https://journals.sagepub.com/doi/full/10.2217/WHE.10.46

Perez-Lopez, F. R., & Hita-Contreras, F. (2014). Management of pudendal neuralgia. Climacteric, 17(6), 654-656.  Retrieved from https://doi.org/10.3109/13697137.2014.912263

National Vulvodynia Association. (n.d.). Retrieved from https://www.nva.org/

Reed, B. D. (2006). Vulvodynia: diagnosis and management. American family physician, 73(7), 1231-1238. Retrieved from https://www.aafp.org/afp/2006/0401/p1231.html

Ross, V., Detterman, C., & Hallisey, A. (2021). Myofascial Pelvic Pain: An Overlooked and Treatable Cause of Chronic Pelvic Pain. Journal of Midwifery & Women’s Health, 66(2), 148-160. Retrieved from https://doi.org/10.1111/jmwh.13224

3 years ago Endometriosis , Endometriosis Education No comment

What are the First Signs and Symptoms of Endometriosis: Everything You Need to Know

Sharp. Stabbing. Burning. Throbbing. Aching. All these adjectives have been used to describe endometriosis pain. Endometriosis is a condition that, for some women, can cause excruciating uterus pain. Some describe it as feeling like their insides are being pulled out of their bodies. Even worse – endometriosis pain medication doesn’t cut through or provide relief for many patients with this condition. Therefore, an endometriosis diagnosis can be very serious and life-changing news.

Our commitment to our patients runs deep, and our mission is to help patients with endometriosis pain and other complications find the skilled doctors they need.

As our first introduction to the disorder, we will give you a brief overview of the signs and symptoms of endometriosis, its causes, complications, and treatment options (or, as we like to call it – hope). First, we will give you general information on the disease and cover what endometriosis is.

What is the Endometrium?

The endometrium, also known as the endometrial lining, is the tissue that comprises the “wallpaper”, or lining of the uterus. The uterus is the pear-shaped organ that houses a growing baby. During pregnancy and menstruation, the endometrium plays vital functions.

What is Endometriosis Pain?

Endometriosis is pronounced (en-doe-me-tree-O-sis). Endometriosis is a medical condition in which tissue similar to what normally lines the inner walls of the uterus, also known as the endometrium, grows outside the uterus. It is often a very painful, even debilitating disorder. It may involve the ovaries, fallopian tubes, bowels, vagina, cervix, and the tissues that line the pelvis. In rare cases, it can also affect other organs, such as the bladder, kidneys, or lungs.

Signs and Symptoms of Endometriosis Pain

Not all women will experience the same symptoms of endometriosis or degree of intensity/severity. Some women may not experience any symptoms at all. 

It is also important to keep in mind that the severity of symptoms is not a solid indicator of the progress of the disease. There are women with advanced stages of endometriosis who experience no symptoms at all and others with mild cases who endure many. Common endometriosis pain symptoms include: 

• Painful periods, or dysmenorrhea
• Infertility
• Diarrhea during period
• Pain during intercourse
• Heavy or abnormal menstrual flow
• Abdominal or pelvic pain after vaginal sex
• Painful urination during or between menstrual periods
• Painful bowel movements during or between menstrual periods
• Gastrointestinal problems, including bloating, diarrhea, constipation, and/or nausea

Mechanisms of Signs and Symptoms of Endometriosis:

Painful periods (dysmenorrhea)

Cyclic release of multiple inflammatory factors activates nerve fiber growth, leads to cell damage and fibrosis, and exacerbates pain during periods. 

Infertility

The overall mechanisms can include tubal blockage, local inflammation, uterine muscle dysfunction, local hormonal alterations, and much more.

Diarrhea during menstrual periods

Diarrhea may result from endometriosis growing directly on the rectal muscle or endometriosis inflammatory substances. Local production of inflammatory molecules can lead to hyper-motility of the sigmoid and rectum muscles, which can manifest as cramping and diarrhea.

Pain during intercourse (dyspareunia)

Endometriosis implants have more nerve endings than usual (hyperinnervated) and can produce pain with pressure. The act of intercourse can apply this pressure on the upper vaginal area and uterosacral ligaments, which are common locations of endo implants. Once this pain occurs and local inflammation further causes tension in the pelvic floor, the muscles surrounding the vagina can contract, which worsens the problem.

Heavy or abnormal menstrual flow

Endometriosis can impact your bleeding by increasing stress from pain or damage to the ovaries, which can change local hormonal function.

Abdominal or pelvic pain after vaginal sex

Uterine and pelvic floor spasms are part of regular orgasms. When these areas are hypersensitive due to endometriosis, spasms lead to continued contractions and pain that lasts for a while. In addition, rectal fusion to the posterior vaginal wall will also cause more direct pain and inflammation by the vaginal area pulling on the rectal wall. Also, as you probably recognize, any event that stirs up the pelvis and causes some trauma leads to increased molecular signaling, further amplifying the problem. 

Painful urination during or between menstrual periods (dysuria)

Painful and frequent urination is a prevalent symptom of endometriosis. Endo cells and responding inflammatory cells produce inflammatory molecular signals that aggregate in the area of injury. These molecular signals affect all pelvic organs, including the bladder, leading to bladder wall spasms. Moreover, interstitial cystitis is common in endometriosis patients and can also be a factor. In the worst-case scenario, endo lesions implant inside the bladder, which can also cause cyclic bleeding from the bladder (hematuria). 

Painful bowel movements during or between menstrual periods (dyschezia)

Endometriosis causes inflammation and fibrosis or scarring as your body attempts to heal. This inflammation and fibrosis can severely alter the anatomy in the pelvis and distort the rectal course, gluing it to the uterus, cervix, and posterior vaginal wall. This angulation can cause constipation and trouble evacuating stool, while the inflammatory signals cause the rectal muscles to hyper-contract. These mechanisms lead to painful bowel movements, which worsen during the cyclic increases in inflammatory molecules. In the worst-case scenario, the endo will grow through the rectum wall over time, causing cyclic rectal bleeding.

Gastrointestinal problems, including bloating, diarrhea, constipation, and nausea

Generally, intestinal symptoms of endometriosis can be direct or indirect or related to conditions like small intestinal bacterial overgrowth (SIBO). Even if there are no direct implants on the bowel, the endo inside the abdomen and pelvis can cause enough inflammation to irritate the intestine and cause symptoms. In addition, endometriosis implants directly on the bowel can worsen the symptoms.

Causes of Endometriosis

One cause of endometriosis is the direct transplantation of endometrial cells into the abdominal wall during a medical procedure, such as a cesarean section. Besides this known cause of endometriosis, other theories exist as to how it develops:

1. One theory is that during the menstrual cycle, a reverse process takes place where the tissue backs up through the fallopian tubes and into the abdominal cavity, where it attaches and grows.

2. Another theory is a genetic link. This is based on studies that show if someone has a family member with endometriosis, they are more likely to have it as well.

3. Some also suggest that the endometrial tissues travel and implant in other body parts via blood or lymphatic channels, like cancer cells spread.

4. A fourth theory suggests that all cells throughout the body have the ability to transform into endometrial cells. 

Complications of Endometriosis

The following are complications of endometriosis if left untreated or in advanced stages of the disorder:

• Infertility/subfertility
• Chronic pelvic pain that can result in disability
• Anatomic disruption of involved organ systems (i.e., adhesions, ruptured cysts, renal failure)

Diagnosis of Endometriosis

The diagnosis starts with assessing signs and symptoms and then performing imaging studies such as MRI and ultrasonography. But the confirmation or exclusion of the endometriosis diagnosis is only possible with surgical biopsy and histopathology. Laparoscopy is the gold-standard surgical modality for diagnosis in all cases.

Treatment for Endometriosis

Endometriosis needs a multidisciplinary team approach for effective and holistic treatment. This team should include the following medical professionals:

• Nutritionist
• Physical therapist
• Endometriosis surgeon
• Mental health therapist
• Pain management specialist

Pain is often the biggest complaint from patients with endometriosis. Therefore, many treatment options are aimed at pain control. So first, here are some options for women to help temporarily ease the pain of endometriosis:

• Exercise
• Meditation
• Breath work
• Heating pads
• Rest and relaxation
• Prevention of constipation

These therapies may be used in combination with medical and/or surgical options to lessen the pelvic pain associated with this disorder. Furthermore, alternative therapies exist that may be used in conjunction with other interventions, and those include but are not limited to:

• Homeopathy
• Immune therapy
• Allergy management
• Nutritional approached
• Traditional Chinese medicine

*Be sure to discuss any of these treatment options with a physician before implementing them.

The Right Medical Treatment For You:

Options for medical and/or surgical treatments for endometriosis are going to depend on several factors, including: 

• Desire for pregnancy
• The extent of the disease
• Type and severity of symptoms
• Patient opinions and preferences
• Overall health and medical history
• Expectations of the course of the disease
• Patients’ tolerance level for medications, therapies, and/or procedures

In some cases, management of pain might be the only treatment. In others, medical options may be considered. The following are typical non-surgical, medical treatments for endometriosis:

• “Watch and Wait” approach, where the course of the disease is monitored and treated accordingly
• Pain medication (anything from non-steroidal anti-inflammatory drugs [NSAIDs] to other over-the-counter and/or prescription analgesics)
• Hormonal therapy, such as:
  • Progestins
  • Oral contraceptives with both estrogen and progestin to reduce menstrual flow and block ovulation
  • Danazol (a synthetic derivative of the male hormone testosterone)
• Gonadotropin-releasing hormone antagonist, which stops ovarian hormone production

Surgical Treatment Options for Endometriosis:

Despite their effectiveness in symptom control, pain medications can have significant side effects. Moreover, these medications do not stop the progression of the disease, and symptoms might return once stopped. But on the other side, surgery can lead to long-term relief and can prevent further damage to tissues. Your treatment plan should be a shared decision based on your desires, goals, and abilities. 

Almost all endometriosis surgical procedures are laparoscopic or robotic. These are minimally invasive surgeries in which small tubes with lights and cameras are inserted into the abdominal wall. It allows the doctor to see the internal organs and remove endometriosis.

Common procedures include: 

Excision of endometriosis:

In this technique, a surgeon cuts out much or all of the endometriosis lesions from the body. Therefore, surgeons avoid leaving any endometriosis lesions behind while preserving normal tissues. This technique is widely adopted by highly skilled endometriosis surgeons who are world leaders.

Ablation of endometriosis:

In this technique, a surgeon burns the surface of the endometriosis lesions and leaves them in the body. Most top experts highly criticize this ablation method. Ablation is most popular with surgeons who have not received enough training to do excision. As a result, these surgeons are not comfortable performing excision, and they do the ablation.

Hysterectomy:

this is a surgery in which surgeons remove the uterus and sometimes ovaries. But, many surgeons consider hysterectomy an outdated and ineffective treatment for endometriosis. Almost all top endometriosis surgeons reject doing it unless there is a clear indication for hysterectomy such as adenomyosis.

Laparotomy:

this surgical procedure cuts and opens the abdomen and does not use thin tubes. Therefore it is more extensive than a laparoscopy. Very few surgeons still do laparotomy because of its complications. Almost none of the top endometriosis surgeons do laparotomy for endometriosis.

Multidisciplinary Care

Along with effective surgical treatment, the patient should start working with endometriosis experts in physical therapy, mental health, nutrition, and pain management to achieve the best possible outcome.

Get in touch with Dr. Steve Vasilev

3 years ago Endometriosis , Endometriosis Education

Pain with sex

A little spoken of symptom of endometriosis is pain with sex. In medical terms, it is called dyspareunia- meaning pelvic pain that occurs before, during, or after intercourse (although similar pain can also be felt with an exam or insertion of a tampon). Deep dyspareunia is “a cardinal symptom of endometriosis” (Wahl et al., 2020) with more than half of women with endometriosis experiencing it (Yong, 2017).  This can play a significant role in the quality of life and relationships (Denny & Mann, 2007). The pain has been described cramping, stabbing, or stinging- among other things.

Yong (2017) proposes a classification of four types of deep dyspareunia in people with endometriosis: “type I that is directly due to endometriosis; type II that is related to a comorbid condition; type III in which genito-pelvic pain penetration disorder is primary; and type IV that is secondary to a combination of types I to III.” Fritzer and Hudelist (2017) found that “surgical excision of endometriosis is a feasible and good treatment option for pain relief and improvement of quality of sex life in symptomatic women with endometriosis.” Excision surgery for endometriosis overall shows improvement in pain with sex; however, other factors such as adenomyosis or painful bladder syndrome (interstitial cystitis) can continue to cause symptoms and should be addressed (Crispi et al., 2021). “Myofascial or nervous system mechanisms may be important for deep dyspareunia in women with endometriosis, even in those with moderate-to-severe disease (Stage III/IV)” (Orr et al., 2018). While it may feel embarrassing to bring up, it is an important aspect of your health to discuss with your provider.  They might suggest pelvic floor therapy, medication, or other options to help. But it is important to address any underlying conditions.

In the meantime, some things to try:

• Have open communication with your partner about what you are feeling and your needs
• Experiment with different times of your cycle that may be less painful (such as the week after ovulation or the first couple of weeks after your period)
• Use of a lubricant
• Try different positions to find which is best for you
• Utilizing forms of intimacy that does not involve penetration

Find more here: https://icarebetter.com/pain-with-penetration/

References

Crispi Jr, C. P., Crispi, C. P., de Oliveira, B. R. S., de Nadai Filho, N., Peixoto-Filho, F. M., & Fonseca, M. D. F. (2021). Six-month follow-up of minimally invasive nerve-sparing complete excision of endometriosis: What about dyspareunia?. Plos one, 16(4), e0250046. Retrieved from https://doi.org/10.1371/journal.pone.0250046

Denny, E., & Mann, C. H. (2007). Endometriosis-associated dyspareunia: the impact on women’s lives. BMJ Sexual & Reproductive Health, 33(3), 189-193. Retrieved from https://srh.bmj.com/content/familyplanning/33/3/189.full.pdf

Fritzer, N., & Hudelist, G. (2017). Love is a pain? Quality of sex life after surgical resection of endometriosis: a review. European Journal of Obstetrics & Gynecology and Reproductive Biology, 209, 72-76. Retrieved from https://doi.org/10.1016/j.ejogrb.2016.04.036

Orr, N. L., Noga, H., Williams, C., Allaire, C., Bedaiwy, M. A., Lisonkova, S., … & Yong, P. J. (2018). Deep dyspareunia in endometriosis: role of the bladder and pelvic floor. The journal of sexual medicine, 15(8), 1158-1166. DOI: 10.1016/j.jsxm.2018.06.007

Wahl, K. J., Orr, N. L., Lisonek, M., Noga, H., Bedaiwy, M. A., Williams, C., … & Yong, P. J. (2020). Deep dyspareunia, superficial dyspareunia, and infertility concerns among women with endometriosis: a cross-sectional study. Sexual medicine, 8(2), 274-281. Retrieved from https://doi.org/10.1016/j.esxm.2020.01.002

Yong, P. J. (2017). Deep dyspareunia in endometriosis: a proposed framework based on pain mechanisms and genito-pelvic pain penetration disorder. Sexual medicine reviews, 5(4), 495-507. Retrieved from https://doi.org/10.1016/j.sxmr.2017.06.005

3 years ago Endometriosis , Endometriosis Education , Endometriosis Physical Therapy No comment

Physical Therapy Before Excision Surgery for Endometriosis

Endometriosis can cause multiple issues for patients. And it can create the need for a multidisciplinary care team to address chronic pelvic pain. Physical therapy is one example of part of a multidisciplinary treatment plan for endometriosis symptoms. Guest writer Rebecca Patton, PT, DPT, discusses considerations for using physical therapy while awaiting excision surgery:

Pelvic physical therapy has gained more following and prompted much-needed discussions in recent years.  However, pelvic physical therapy looks quite different for someone with chronic pelvic pain and endometriosis.

The reality is that pelvic physical therapists may be the first line of defense to refer a patient to a specialist.  First, because we have direct access, meaning a patient can see us for an evaluation before seeing a physician.  Second, because symptoms of endometriosis are often missed or dismissed by referring providers.  In the latter case, someone may be referred to physical therapy before excision surgery or even before seeing an endo specialist.

Physical Therapists can Optimize Care by Helping a Patient Get to a Specialist while Providing Physical Therapy Treatment.  

If we are seeking to provide the best care available for the treatment of endo, getting a faster diagnosis and referring a patient to an excision specialist is the primary goal.  With a thorough medical history including bowel and bladder habits, menstrual symptoms, pelvic pain symptoms, previous treatment, and understanding the patient’s experience, a pelvic physical therapist can create a differential diagnosis list that may include endometriosis.  If endometriosis is suspected, a referral to an excision specialist should be given to the patient and explained. 

Endo Specialists’ Wait Times Vary Greatly Depending on Where You are Located. 

In my personal experience in Phoenix, AZ, a large metropolitan area with several specialists, it takes anywhere from 3-12 months.  More time if we are in the middle of a global pandemic.  Decreased access in rural areas may also increase waiting times.  One positive change is the inclusion of virtual appointments which may improve access for those in rural areas. 

During the waiting period, the goal is to manage pain and maintain some regularity with bowel and bladder habits until excision surgery.  Internal pelvic floor retraining may or may not be appropriate during this time. 

As mentioned before, physical therapy before excision surgery is going to look different from treatments for other conditions.  As a patient, you want to ensure the physical therapist you are seeing treats patients with endo regularly.  You may want to consult with them prior about how often they treat patients with endo and what treatments they use specifically.  Additional coursework for visceral and abdominal manual therapy techniques, nerve mobilization, and myofascial therapy techniques will be helpful.  

Most Studies Research the Effectiveness of Physical Therapy Following Excision Surgery.  What About Physical Therapy Before Excision Surgery?

Zhao et al. (1) found that 12 weeks of PMR (progressive muscle relaxation) training is effective in improving anxiety, depression, and quality of life of endometriosis patients under GnRH agonist therapy.  These participants had not received excision surgery.

Awad et al. (2) found improvements in posture and pain with an 8-week regular exercise program in those diagnosed with mild to moderate endometriosis.  This exercise program included posture awareness, diaphragm breathing, muscle relaxation techniques, lower back and hip stretches, and walking. Of note, this exercise program was not vigorous exercise.  These participants were also receiving hormonal treatment but not receiving pain medication. 

Both studies did not say that physical exercise or PMR plays a role in the prevention of the occurrence or progression of endometriosis.   Both studies were short-term (8-12 weeks) and did not explore pain management directly before excision or outcomes after excision.

In the time that a patient is waiting for excision surgery, I believe physical therapy treatment can be effective at minimizing overall pain levels and improving quality of life.

A Few Factors to Keep in Mind if you are Seeking Pelvic Physical Therapy Before Excision Surgery:

1.       Your symptoms after physical therapy should not last more than 1-2 days and should feel manageable. Being bedridden for a week after physical therapy is not a helpful treatment.  If you experience this, be sure to communicate it with your physical therapist to adjust the plan.  Not all pelvic PTs are experienced with this type of treatment and they may create an exercise plan that is too vigorous. 

2.       Internal pelvic floor treatment is not always the most helpful in this situation and may exacerbate symptoms. An individualized plan is important to discuss with your provider.

3.       You are in charge of your body. If you don’t feel like treatment is working then communicate that to your team and discuss other options.  It is always okay to voice your concerns to change the treatment to fit you best.

4.       Treatment before surgery requires a multidisciplinary team.  This may include other pain management options including medication.

iCareBetter is doing the groundwork to vet pelvic physical therapists. 

Rebecca Patton PT, DPT (If you are seeking a pelvic PT, I accept consultations through my website for in person and telehealth appointments: https://www.pattonpelvichealth.com/)

For more resources on physical therapy for endometriosis see: https://nancysnookendo.com/learning-library/treatment/lessons/physical-therapy-resources/

References

Zhao L, Wu H, Zhou X, et al.: Effects of progressive muscular relaxation training on anxiety, depression and quality of life of endometriosis patients under gonadotrophin-releasing hormone agonist therapy. Eur J Obstet Gynecol Reprod Biol, 2012, 162: 211–215. [PubMed] [Google Scholar]

Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. doi:10.1589/jpts.29.2112 [NCBI]

3 years ago Endometriosis , Endometriosis Education

Physical Therapy Before Excision Surgery for Endometriosis

Endometriosis can cause multiple issues for our bodies and can create the need for a multidisciplinary care team to address chronic pelvic pain. Physical therapy is one example of part of a multidisciplinary treatment plan for endometriosis symptoms. Guest writer Rebecca Patton, PT, DPT, discusses considerations for using physical therapy while awaiting excision surgery:

Pelvic physical therapy has gained more following and prompted much needed discussions in recent years.  However, pelvic physical therapy looks quite different for someone with chronic pelvic pain and endometriosis.

The reality is that pelvic physical therapists may be a first line of defense to refer a patient to a specialist.  First, because we have direct access, meaning a patient can see us for an evaluation before seeing a physician.  Second, because symptoms of endometriosis are often missed or dismissed by referring providers.  In the latter case, someone may be referred to physical therapy before excision surgery or even before seeing an endo specialist.

Top endometriosis physical therapists

Endometriosis Physical Therapy

pelvic floor therapy for endometriosis

Physical therapists can optimize care by helping a patient get to a specialist while providing physical therapy treatment.  

If we are seeking to provide the best care available for treatment of endo, getting faster diagnosis and referring a patient to an excision specialist is the primary goal.  With a thorough medical history including bowel and bladder habits, menstrual symptoms, pelvic pain symptoms, previous treatment, and understanding the patient’s experience, a pelvic physical therapist can create a differential diagnosis list that may include endometriosis.  If endometriosis is suspected, a referral to an excision specialist should be given to the patient and explained. 

Endo specialists’ wait times vary greatly depending on where you are located. 

In my personal experience in Phoenix, AZ, a large metropolitan area with several specialists, it takes anywhere from 3-12 months.  More time if we are in the middle of a global pandemic.  Decreased access in rural areas may also increase waiting times.  One positive change is the inclusion of virtual appointments which may improve access for those in rural areas. 

During the waiting period, the goal is to manage pain and maintain some regularity with bowel and bladder habits until excision surgery.  Internal pelvic floor retraining may or may not be appropriate during this time. 

As mentioned before, physical therapy before excision surgery is going to look different from treatments for other conditions.  As a patient, you want to ensure the physical therapist you are seeing treats patients with endo regularly.  You may want to consult with them prior about how often they treat patients with endo and what treatments they use specifically.  Additional coursework for visceral and abdominal manual therapy techniques, nerve mobilization, and myofascial therapy techniques will be helpful.  

Most studies research the effectiveness of physical therapy following excision surgery.  What about physical therapy before excision surgery?

Zhao et al. (1) found that 12 weeks of PMR (progressive muscle relaxation) training is effective in improving anxiety, depression and QOL of endometriosis patients under GnRH agonist therapy.  These participants had not received excision surgery.

Awad et al. (2) found improvements in posture and pain with an 8-week regular exercise program in those diagnosed with mild to moderate endometriosis.  This exercise program included posture awareness, diaphragm breathing, muscle relaxation techniques, lower back and hip stretches, and walking.  Of note, this exercise program was not vigorous exercise.  These participants were also receiving hormonal treatment but not receiving pain medication. 

Both studies did not say that physical exercise or PMR plays a role in the prevention of the occurrence or progression of endometriosis.   Both studies were short term (8-12 weeks) and did not explore pain management directly before excision or outcomes after excision.

In the time that a patient is waiting for excision surgery, I believe physical therapy treatment can be effective at minimizing overall pain levels and improving quality of life.

A few factors to keep in mind if you are seeking pelvic physical therapy before excision surgery:

1. Your symptoms after physical therapy should not last more than 1-2 days and should feel manageable. Being bedridden for a week after physical therapy is not a helpful treatment.  If you experience this, be sure to communicate it with your  physical therapist to adjust the plan.  Not all pelvic PT’s are experienced with this type of treatment and they may create an exercise plan that is too vigorous. 
2. Internal pelvic floor treatment is not always the most helpful in this situation and may exacerbate symptoms. An individualized plan is important to discuss with your provider.
3. You are in charge of your body. If you don’t feel like a treatment is working then communicate that to your team and discuss other options.  It is always okay to voice your concerns to change the treatment to fit you best.
4. Treatment before surgery requires a multidisciplinary team.  This may include other pain management options including medication.

iCareBetter is doing the ground work to vet pelvic physical therapists. 

Rebecca Patton PT, DPT (If you are seeking a pelvic PT, I accept consultations through my website for in person and telehealth appointments: https://www.pattonpelvichealth.com/)

For more resources on physical therapy for endometriosis see: https://icarebetter.com/physical-therapy-resources/

References

Zhao L, Wu H, Zhou X, et al.: Effects of progressive muscular relaxation training on anxiety, depression and quality of life of endometriosis patients under gonadotrophin-releasing hormone agonist therapy. Eur J Obstet Gynecol Reprod Biol, 2012, 162: 211–215. [PubMed] [Google Scholar]

Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. doi:10.1589/jpts.29.2112 [NCBI]

3 years ago Endometriosis , Endometriosis Education

Choosing the Right Mental Health Therapist

By Deanna Denman, PhD, Licensed Psychologist, Clinical Health Psychologist

Find the right therapist can be just as difficult as finding an endometriosis specialist. There are many different types of therapists providing many different types of therapy out there, and “fit” between you and your therapist is very important. I’ve included some helpful information and tips below to help you find a good therapist if you’d like some support along your Endo journey.

1. Finding a therapist-

-Expect to check out several therapists via website. Most therapists offer a free consultation to see if you both think it’s a good fit. The “fit” with you and your therapist is going to be important for your trust and ultimately your progress in therapy.

-If you meet with someone and they aren’t a good fit, that’s okay! You can even ask them if they have referrals for you.

-Ask your doctor if they have any recommendations. Some doctors have therapists they have worked with in the past and who they trust. Ask if your doctor has any referrals for you.

-There are SEVERAL therapist directories. Search them for therapists in your area. I encourage you to check out:

• Inclusive Therapists
• Psychology Today
• Therapy for Black Girls
• Therapy for Latinx
• QTPOC
• Your insurance company (they usually list covered providers on their website)
• Your network (friends, family, co-workers) if you are comfortable

**Some people prefer to work with therapists who hold similar identities to them. I’ve included some resources for therapists of color and LGBTQ+ therapists in the list above***

2. What to ask-

So you’ve found a few potential therapists. What should you ask in the first consultation:

-How much do sessions cost?

            Therapy is an investment in your well-being, but I know costs can be prohibitive! BE thoughtful and open about your budget for therapy. Many therapists list their rates online as well as whether or not they accept insurance. Some therapists don’t accept insurance, but will still provide you with a receipt for services that you can provide to your insurance for reimbursement. ***Talk to your insurance provider about your out-of-network mental health benefits.***

-How much experience and what trainings do you have in working with people with endometriosis?

(You can also ask about other things you’d like to work on in therapy like trauma, anxiety, or even people-pleasing). Really anything is fair game, but it’s important to assess their comfort level with your particular concerns. Specifically, if you are seeking support with your Endo, you want to know if they are familiar with the condition, if they are comfortable in collaborating with your medical providers, and what kinds of interventions they use. If they have never worked with someone with chronic pain, or their only recommendation for someone with chronic pain is to start exercising, they’re not likely to be a good fit.

–How will we set goals/measure progress?

Ideally, you want to set goals together with your therapist. You should also check in regularly about how you are doing and the plan for moving forward

3. Credentials-

If you’ve ever been confused by the alphabet soup after therapists’ names, you’re not alone. The conversation around the differences between “counseling” and “therapy” are beyond the scope of this post. Most people use the terms interchangeably and the right provider for you could fall into either category.

***Note: any provider you work with must be licensed to practice (or pursuing licensure and working under supervision)***

Let’s break it down:

Professional Counselors

• LPC- licensed professional counselor (may have -A, -S behind LPC to designate  “associate” or “supervisor”)
• LMHC- licensed mental health counselor
• LCADAC- licensed clinical alcohol and drug abuse counselor
• LMFT- licensed marriage and family therapist

Broadly, counselors are more focused on helping you solve mental health and behavioral problems and giving you very practical skills.

*LMFTs are not technically counselors (their title even includes ‘therapist’), but they best fit in this category, and tend to specialize in things influenced by relationships. LMFTs DO offer individual therapy and often have specialty training in concerns like infertility.

Social Workers

• LCSW- licensed clinical social worker (may have -A, or -C behind LCSW to designate “associate” or “certified”)
• LISW- licensed independent social worker
• MSW- Master of social work (the degree)

Again, broadly, social workers are very well trained to address social and environmental issues (think: systems of oppression and “isms”) and problem-solve. They also tend to be very knowledgeable about resources (like programs and trainings) that can help you.

Psychologists

• PhD- doctor of philosophy
• PsyD- doctor of psychology

Generally, psychologists focus on very complex issues and very strongly grounded in theories of mental health. They tend to be more assessment-, and research-, focused due to their training. (They can also do psychological testing for things like memory and learning disabilities)

These are all very broad generalizations and still don’t address people’s specialties (the populations they focus on), the theory they are grounded in, or the interventions they use. The best place to get a sense of that is by reading their websites and speaking with them directly.

What’s important- regardless of the letters, most of them are trained to help people work things out in therapy. They will NOT all have the training to help with issues around endometriosis. That’s why taking advantage of the consultation is important.

4. Specialties-

Therapists often have specialties. Realistically, you can find therapists specializing in just about anything. There are some therapists who specialize in trauma, others who specialize in working with high-achievers who want to slow down. There are ALSO therapists who specialize in working with patients who have chronic illness. You may want to see a provider who has specialty training and focus in working with patients with chronic illness. Finding the right therapist for you can take some effort but is worth it. Consider what you’d like to address and look for therapists who speak to that on their sites/listings. If you can, take advantage of free consultations. Ask potential therapists about their experience and training in your concerns. Be open to trying more than one and know that personality fit is important. It’s okay to search until you find the right support for you on this endometriosis journey.

3 years ago Endometriosis , Endometriosis Education

Endo diet: Mediterranean or FODMAP for the win?

A healthy eating pattern can be therapeutic and good for our health overall, but it can be difficult to decide on what is best for our bodies. The process can involve a long time spent in trial and error to find what works for our individual body and its needs. When looking at studies on dietary interventions, we find that they are difficult to perform- often ending up with strong bias or high inconsistent rates with adherence (anyone else here ever cheat on a diet??). But they can give us some direction. For instance, a systematic analysis by Nirgianakis et al. (2021) looked at a few recent studies on diet’s effect on endometriosis symptoms. While, unfortunately, the data was not strong enough for any strong conclusions, it can give some clues for individuals with endometriosis (along with consultation with a healthcare provider).

Two of the diets looked at included the Mediterranean diet and a diet low in fermentable oligo-, di-, monosaccharides, and polyols (FODMAP). Both showed promise for help with endometriosis symptoms, particularly gastrointestinal symptoms and pain.

Nirgianakis et al., (2021) explains:

“FODMAPs are poorly absorbed, short-chain carbohydrates that are readily fermentable by bacteria. Their osmotic actions and gas production may cause intestinal luminal distension inducing pain and bloating in patients with visceral hypersensitivity with secondary effects on gut motility….Diseases like irritable bowel syndrome and endometriosis come along with visceral hypersensitivity, implementing the hypothesis of symptom-reduction after sticking to a low-FODMAP diet. This is very important given the high prevalence of gastrointestinal-related symptoms and co-morbidities in patients with endometriosis. Interestingly, the low-FODMAP diet includes not only a low-Ni diet, but also a low-lactose and a low-gluten diet, thus covering the above-mentioned diets and a large spectrum of high-prevalence pathologies, such as lactose intolerance and non-celiac gluten sensitivity. It is therefore possible to obtain clinical benefits from a low-FODMAP diet, even if at the cost of probably not necessary dietary exclusions.”

The Mediterranean diet includes “fresh vegetables, fruit, white meat, fish rich in fat, soy products, whole meal products, foods rich in magnesium, and cold-pressed oils,” while avoiding “sugary drinks, red meat, sweets, and animal fats”. The review noted that “a significant relief of general pain, dysmenorrhea, dyspareunia, and dyschezia as well as an improvement in the general condition was found.” Moreover, the “Mediterranean diet has well-known antioxidant effects. However, the Mediterranean diet does not involve just the supplementation of certain antioxidants, but rather a collection of eating habits and may thus improve endometriosis-associated pain via additional mechanisms. Fish as well as extra virgin olive oils have been shown to exert anti-inflammatory effects. Specifically, extra virgin olive oil, which contains the substance oleocanthal, displays a similar structure to the molecule ibuprofen, and both take effect via the same mechanism, i.e., cyclooxygenase inhibition. Moreover, the increased amount of fibers provides a eupeptic effect while foods high in magnesium could prevent an increase in the intracellular calcium level and advance the relaxation of the uterus. Taking into account the lack of risks or side effects even after long-term lifetime adherence to this diet and the possible other general health benefits, clinicians may suggest this type of dietary intervention to patients with endometriosis who wish to change their nutritional habits.”

Finally, the authors looked at a qualitative study and found that “the participants experienced an increase in well-being and a decrease in symptoms following their dietary and lifestyle changes. They also felt that the dietary changes led to increased energy levels and a deeper understanding of how they could affect their health by listening to their body’s reactions.” So, taking control of your diet can help improve your general sense of well-being.

Again, there was not strong evidence from any of the studies reviewed, but it might prove helpful when discussing complementary therapies with your healthcare provider. You can find more information about diet and endometriosis here.  

Reference

Nirgianakis, K., Egger, K., Kalaitzopoulos, D. R., Lanz, S., Bally, L., & Mueller, M. D. (2021). Effectiveness of Dietary Interventions in the Treatment of Endometriosis: a Systematic Review. Reproductive Sciences, 1-17. Retrieved from https://link.springer.com/article/10.1007/s43032-020-00418-w

3 years ago Endometriosis , Endometriosis Education

Life altering disease and caregivers

Endometriosis can have a profound effect on a person’s ability to work, care for their home, care for their family, and even care for themselves- and this impacts their loved ones as well (Missmer et al., 2021). Endometriosis can have a “negative impact on intimate relationships” (Facchin et al., 2021). It is essential for the person with endometriosis and their support person(s) to have a plan to take care of both of themselves.

The impact endometriosis has on the activities of daily life is not well understood by the general population. This makes it difficult for even loved ones and family members to understand why you may be so fatigued or in too much pain some days to do what you might be able to other days- not to mention the emotional toll it can have. Education for loved ones about the disease itself is important as is education about the treatment. To “minimize the negative impact of endometriosis” on an individual’s life course, “early diagnosis and effective intervention in treating the disease” is imperative (Missmer et al., 2021). This is what we advocate for so strongly- early diagnosis and effective treatment to minimize the impact on a person’s life!

Once your support person or caregiver has a better understanding of the disease and its treatment, you can both develop a plan on how to handle its impact on your lives. Endometriosis can be life altering for those of us with it and those around us. It is important to address the way endometriosis affects our daily lives and have a plan to care for ourselves and our caregivers. This could be parents, partners, children, and various other loved ones involved in our lives. Each might have a different role to play and its good to have a collective plan to lessen the detrimental effects of endometriosis.

For those of us with endometriosis, remember it’s okay to need help. It is easy to feel guilty about not being able to do things, but don’t feel guilty for the effects of a chronic illness. You are doing the best you can. Accept help when it’s offered. Be realistic about what you need to live your best life possible where you are at. Borrowing from the Marine Corps, we have to improvise and adapt if we are to overcome. You are worth the effort.

For the caregivers in our lives- thank you. You’ll never know how much it means to have someone love, understand, and support us on this difficult journey. There are many of us who don’t have that support in our lives and are most acutely aware of how much it would mean. We want you to take care of yourself too. The following is for anyone who is in a caregiver role (including those of us with endometriosis who are in a caregiver role as well):

Being a support person or a caregiver can be both difficult and rewarding. When you start to feel the weight of it, there is a nursing diagnosis for it called “caregiver role strain” (Wayne, 2017). “While caregiving can be rewarding and positive, many family caregivers experience significant physical, psychological, and financial stressors in association with their caregiving role” (Wayne, 2017). This strain can come from multiple factors, such as unrealistic expectations (you won’t be able to fix us), juggling multiple roles (such as income earner, caregiver to other family members), lack of a support system (especially with a disease that others may not understand or may even trivialize), financial pressures, demands of care, social isolation, and neglecting your own well-being (FreedomCare, 2020).

From Wayne (2017), here are some things that might help with reducing caregiver role strain:

• Set aside time for yourself. Take care of your own physical and emotional needs. You can’t pour from an empty cup- you need time to rebuild your physical and emotional energy.
• Utilize stress-reducing methods- “It is important that the caregiver has the opportunity to relax and reenergize emotionally throughout the day to assume care responsibilities.”
• Participate in a support group if there is one available close by or online. 
• Discuss problems, concerns, and feelings with a support person or a counselor.  Sometimes you need someone outside the family to talk to. Taking on the caregiver role can change dynamics of the relationship and it can take effort to keep the “normal” relationship stuff going.
• Accept help! Ask and allow other available family and friends to assist with caregiving. “Successful caregiving should not be the sole responsibility of one person.”
• Make life chores easy on the both of you. For example, having occasional (or regular if you are able!) housekeeping services or deciding to get takeout food rather than cook one night can help relieve the burden sometimes. It’s okay if it’s not perfect.           

Resources:

• Find more at: https://icarebetter.com/learning-library/patient-stories/
• Wondering if you are suffering from caregiver role strain? You can use the Modified Caregiver Strain Index to assess and talk to your healthcare provider about ways to help cope: https://www.sralab.org/sites/default/files/2017-07/issue-14.pdf
• Endowhat: “Caregivers” https://www.endowhat.org/caregivers

References

Facchin, F., Buggio, L., Vercellini, P., Frassineti, A., Beltrami, S., & Saita, E. (2021). Quality of intimate relationships, dyadic coping, and psychological health in women with endometriosis: Results from an online survey. Journal of Psychosomatic Research, 146, 110502. Retrieved from https://doi.org/10.1016/j.jpsychores.2021.110502

FreedomCare. (2020). What is caregiver strain and how to avoid it. Retrieved from https://www.freedomcareny.com/posts/caregiver-role-strain

Missmer, S. A., Tu, F. F., Agarwal, S. K., Chapron, C., Soliman, A. M., Chiuve, S., … & As-Sanie, S. (2021). Impact of endometriosis on life-course potential: a narrative review. International Journal of General Medicine, 14, 9. doi: 10.2147/IJGM.S261139

Wayne, G. (2017). Caregiver role strain nursing care plan. Retrieved from https://nurseslabs.com/caregiver-role-strain/

3 years ago Endometriosis , Endometriosis Education

Insomnia and poor sleep with endometriosis

Sleep quality in individuals with endometriosis is significantly worse than those without it (Nunes et al., 2015). It seems like a no-brainer that pain and other symptoms from endometriosis can affect sleep quality. In fact, pain from endometriosis is known to affect a person’s “work/school, daily activities, exercise, and sleep to a moderate-extreme degree” (DiVasta et al., 2018). And in a vicious cycle, pain affects sleep and poor sleep affects pain. We get how pain can affect sleep, but what are the mechanics behind poor sleep affecting pain?

Ishikura et al. (2020) explains:

“It is well known that any pain condition can affect sleep, leading to sleep disturbances and impairment in sleep quality. In turn, sleep disruption can activate inflammatory mechanisms by triggering changes in the effector systems that regulate the immune system, resulting in abnormal increases in inflammatory responses that can stimulate or increase pain. This can result in the creation of a vicious cycle, with pain causing sleep disturbance that increases inflammation, leading to increased pain. Moreover, experimental studies have shown that the association of sleep loss and inflammatory markers are stronger in females than males, suggesting that women with both insomnia and endometriosis complaints are more susceptible to symptoms of pain. Endometriosis induces several debilitating symptoms that affect women´s lives, including insomnia; however, there have been very few studies of this association…. Treating insomnia would reduce the negative outcomes related to the inflammatory- and pain-related aspects of endometriosis and would contribute to an improvement in mental health and daytime function.”

This poor sleep can increase fatigue, affect quality of life, increase stress, and be detrimental to mental health in those with endometriosis (Arion et al., 2020; Ramin-Wright et al., 2018). Hormonal fluctuations within the menstrual cycle can affect sleep quality as well (drop in progesterone before menses, rise in body temperature during the luteal phase). Some hormonal treatments can affect sleep (Brown et al., 2008).

What can we do to help our sleep? Step one is to have a plan to address the underlying factors affecting sleep such as removing endometriosis. In the meantime, practice pain reduction techniques (nutrition,complimentary therapies such as yoga, pelvic physical therapy, etc.), practice good sleep hygiene, and talk to your healthcare provider about ways to manage pain and insomnia. One study indicated that “melatonin improved sleep quality” and “reduced the risk of using an analgesic by 80%” in patients with endometriosis (Schwertner et al., 2013). The American Academy of Sleep Medicine (2020) reports that cognitive behavioral therapy is the most effective therapy for chronic insomnia. They also suggest:

Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.

Set a bedtime that is early enough for you to get at least 7-8 hours of sleep.

Don’t go to bed unless you are sleepy.

If you don’t fall asleep after 20 minutes, get out of bed. Go do a quiet activity without a lot of light exposure. It is especially important to not get on electronics.

Establish a relaxing bedtime routine.

Use your bed only for sleep and sex.

Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.

Limit exposure to bright light in the evenings.

Turn off electronic devices at least 30 minutes before bedtime.

Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.

Exercise regularly and maintain a healthy diet.

Avoid consuming caffeine in the afternoon or evening.

Avoid consuming alcohol before bedtime.

Reduce your fluid intake before bedtime.

American Academy of Sleep Medicine (2020)

References

American Academy of Sleep Medicine. (2020). Healthy sleep habits. Retrieved from https://sleepeducation.org/healthy-sleep/healthy-sleep-habits/

Arion, K., Orr, N. L., Noga, H., Allaire, C., Williams, C., Bedaiwy, M. A., & Yong, P. J. (2020). A quantitative analysis of sleep quality in women with endometriosis. Journal of Women’s Health, 29(9), 1209-1215. Retrieved from https://www.liebertpub.com/doi/abs/10.1089/jwh.2019.8008

Brown, S. G., Morrison, L. A., Larkspur, L. M., Marsh, A. L., & Nicolaisen, N. (2008). Well-being, sleep, exercise patterns, and the menstrual cycle: a comparison of natural hormones, oral contraceptives and depo-provera. Women & health, 47(1), 105-121. Retrieved from https://doi.org/10.1300/J013v47n01_06

DiVasta, A. D., Vitonis, A. F., Laufer, M. R., & Missmer, S. A. (2018). Spectrum of symptoms in women diagnosed with endometriosis during adolescence vs adulthood. American journal of obstetrics and gynecology, 218(3), 324-e1. Retrieved from https://doi.org/10.1016/j.ajog.2017.12.007

Ishikura, I. A., Hachul, H., Pires, G. N., Tufik, S., & Andersen, M. L. (2020). The relationship between insomnia and endometriosis. Journal of Clinical Sleep Medicine, 16(8), 1387-1388. Retrieved from https://doi.org/10.5664/jcsm.8464

Nunes, F. R., Ferreira, J. M., & Bahamondes, L. (2015). Pain threshold and sleep quality in women with endometriosis. European Journal of Pain, 19(1), 15-20. Retrieved from https://doi.org/10.1002/ejp.514

Ramin-Wright, A., Schwartz, A. S. K., Geraedts, K., Rauchfuss, M., Wölfler, M. M., Haeberlin, F., … & Leeners, B. (2018). Fatigue–a symptom in endometriosis. Human reproduction, 33(8), 1459-1465. Retrieved from https://doi.org/10.1093/humrep/dey115

Schwertner, A., Dos Santos, C. C. C., Costa, G. D., Deitos, A., de Souza, A., de Souza, I. C. C., … & Caumo, W. (2013). Efficacy of melatonin in the treatment of endometriosis: a phase II, randomized, double-blind, placebo-controlled trial. PAIN®, 154(6), 874-881. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S030439591300081X

3 years ago Endometriosis , Endometriosis Education

What’s all the buzz about the bowel?

The bloating, cramping, diarrhea, constipation, pain with bowel movements, nausea…could this be endometriosis?

Yes, it could.

Irritable bowel syndrome (IBS) like symptoms are common with endometriosis- up to 85% of endometriosis patients have gastrointestinal/bowel symptoms (Aragon & Lessey, 2017; Ek et al., 2015). It can be difficult to distinguish if it is endometriosis causing the IBS-like symptoms or if IBS is occurring along with endometriosis. Ek (2019) noted that “several potential shared pathophysiological mechanisms exist between endometriosis and IBS, such as chronic low-grade inflammation, increased mast cell numbers, increased mast cell activation, visceral hypersensitivity, altered gut microbiota and increased intestinal permeability, which has been described in relation to both endometriosis and IBS.” IBS symptoms can be helped with a low FODMAPs diet, and studies have noted that those with both IBS type symptoms AND endometriosis found improvement with a low FODMAPs diet (Moore et al., 2017). (See more info on bowel/GI endometriosis)

Endometriosis does not have to be on the bowel to cause bowel symptoms. Most of the time, symptoms may be due to irritation from lesions near the bowel (such as posterior cul de sac, Pouch of Douglas, uterosacral ligaments, etc.) or from adhesions pulling on the bowel (Aragon & Lessey, 2017; Ek et al., 2015).  The incidence of endometriosis on the bowel itself ranges from 5% to 12% of those with endometriosis (Habib et al., 2020).

When endometriosis does involve the bowel, it most often found on the sigmoid colon, “followed by the rectum, ileum, appendix, and caecum” (Charatsi et al., 2018). “Extremely rare locations that have been reported include the gallbladder, the Meckel diverticulum, stomach, and endometriotic cysts of the pancreas and liver” (Charatsi et al., 2018). It can be difficult to determine bowel involvement from symptoms alone. Symptoms can range from none to crampy abdominal pain, constipation, diarrhea, pain with bowel movements, nausea, vomiting, and rarely rectal bleeding (Charatsi et al., 2018). Symptoms may be acyclical (all month long) and then aggravated during your period (Charatsi et al., 2018).

If your surgeon is suspicious of bowel involvement, they may do imaging prior to surgery to help guide care. Transvaginal ultrasounds and magnetic resonance imaging (MRIs) can be useful in detecting bowel involvement (but don’t necessarily rule it out) (Guerriero  et al., 2018). According to one center that specializes in endometriosis surgery, “lesions on the colon, especially the distal sigmoid and rectum, I find ultrasound to be the most reliable” with the limitation that “it will only image the distal 20 cm of the colon, and lesions above that will be missed” (Pacific Endometriosis and Pelvic Surgery, n.d.). “For higher lesions on the sigmoid, the right colon, and small bowel then MRI is more accurate” (Pacific Endometriosis and Pelvic Surgery, n.d.).

Will surgery fix those IBS-like symptoms? It can be difficult to find studies that prove that. Mostly because  “surgical techniques are not standardized” (Wolthuis et al., 2014). However, one center that specializes in endometriosis surgery found (with questionnaires of their patients) that their patients saw an “80% reduction in most bowel symptoms” (Center for Endometriosis Care, 2020). This rate may not be found with general gynecology surgery. If you think you might have bowel involvement, it is important to find the right care. The success of surgery depends on the skills and experience of the surgeon and a multidisciplinary team. It is recommended that “surgery should be performed by experienced surgeons, in centres with access to multidisciplinary care” (Habib et al., 2020, para. 1). While hormonal medications have been shown to help relieve symptoms, it may not stop the progression of the disease which can lead, in severe cases, to bowel obstruction; therefore, it is recommended that close follow-up be utilized if you do not choose surgical treatment (Habib et al., 2020; Ferrero et al., 2011).

• Interested in more info on bowel endo care from the experts? See the Endo Summit’s videos found on YouTube: https://www.youtube.com/watch?v=QJRkk4-6cSk and https://www.youtube.com/watch?v=BXUllhdW2h0
• For more on surgical technique for bowel endometriosis look here.
• You can search for surgeons with skill on bowel endometriosis here.
• Problems with pelvic floor dysfunction and other issues can also contribute to some symptoms- see Pelvic Floor Dysfunction

References

Aragon, M., & Lessey, B. A. (2017). Irritable Bowel Syndrome and Endometriosis: Twins in Disguise. GHS Proc, 43-50. Retrieved from https://hsc.ghs.org/wp-content/uploads/2016/11/GHS-Proc-Ibs-And-Endometriosis.pdf

Center for Endometriosis Care. (2020). Bowel endometriosis. Retrieved from https://centerforendo.com/endometriosis-and-bowel-symptoms

Charatsi, D., Koukoura, O., Ntavela, I. G., Chintziou, F., Gkorila, G., Tsagkoulis, M., … & Daponte, A. (2018). Gastrointestinal and urinary tract endometriosis: a review on the commonest locations of extrapelvic endometriosis. Advances in medicine, 2018. Retrieved from https://doi.org/10.1155/2018/3461209

Ek, M. (2019). Gastrointestinal symptoms in women with endometriosis. Aspects of comorbidity, autoimmunity and inflammatory mechanisms (Doctoral dissertation, Lund University).

Ek, M., Roth, B., Ekström, P., Valentin, L., Bengtsson, M., & Ohlsson, B. (2015). Gastrointestinal symptoms among endometriosis patients—A case-cohort study. BMC women’s health, 15(1), 59. doi: 10.1186/s12905-015-0213-2

Ferrero, S., Camerini, G., Maggiore, U. L. R., Venturini, P. L., Biscaldi, E., & Remorgida, V. (2011). Bowel endometriosis: Recent insights and unsolved problems. World journal of gastrointestinal surgery, 3(3), 31. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069336/

Guerriero, S., Saba, L., Pascual, M. A., Ajossa, S., Rodriguez, I., Mais, V., & Alcazar, J. L. (2018). Transvaginal ultrasound vs magnetic resonance imaging for diagnosing deep infiltrating endometriosis: systematic review and meta‐analysis. Ultrasound in Obstetrics & Gynecology, 51(5), 586-595.  Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1002/uog.18961  

Habib, N., Centini, G., Lazzeri, L., Amoruso, N., El Khoury, L., Zupi, E., & Afors, K. (2020). Bowel Endometriosis: Current Perspectives on Diagnosis and Treatment. International Journal of Women’s Health, 12, 35. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6996110/

Moore, J. S., Gibson, P. R., Perry, R. E., & Burgell, R. E. (2017). Endometriosis in patients with irritable bowel syndrome: specific symptomatic and demographic profile, and response to the low FODMAP diet. Australian and New Zealand Journal of Obstetrics and Gynaecology, 57(2), 201-205. Retrieved from https://doi.org/10.1111/ajo.12594

Pacific Endometriosis and Pelvic Surgery. (n.d.) Bowel disease. Retrieved from https://pacificendometriosis.com/bowel-disease/?fbclid=IwAR1EVUZJHHVk7wvdGwTwJ6Mo8QICiY8ktRtCXIotvhQzKqvTqa0LSjEZs-k

Wolthuis, A. M., Meuleman, C., Tomassetti, C., D’Hooghe, T., van Overstraeten, A. D. B., & D’Hoore, A. (2014). Bowel endometriosis: colorectal surgeon’s perspective in a multidisciplinary surgical team. World Journal of Gastroenterology: WJG, 20(42), 15616. doi: 10.3748/wjg.v20.i42.15616

3 years ago Endometriosis , Endometriosis Education

Mast cells and endometriosis

Endometriosis is an inflammatory disorder, and this inflammation can lead to increased pain, fatigue, and general feelings of unwellness.  Mast cells are immune system cells that can stimulate inflammation (Graziottin, Skaper, & Fusco, 2014). Mast cells hold proinflammatory substances (such as histamine, cytokines, prostaglandins, and more), and, when activated, release these proinflammatory substances (Weller, n.d.). When responding to a threat to the body and for healing, this is a good thing. But when mast cells are activated in endometriosis, not so much.

Activated mast cells (the ones that have released all those proinflammatory substances) have been found in higher quantities in endometriosis lesions versus normal tissue (Hart, 2015; Indraccolo & Barbieri, 2010; Sugamata et al., 2005). Estrogen seems to stimulate mast cells to support the inflammatory process (Zhu et al., 2018). In fact, estrogen receptors are found on mast cells and the high local levels of estrogen from endometriotic lesions may activate the mast cells and lead to pain (Hart, 2015; Zhu et al., 2018). While many therapies for endometriosis involve lowering estrogen production by the feedback loop between the brain and the ovaries, it should be remembered that endometriosis lesions demonstrate production of estrogen themselves (and also show resistance to progesterone) (Delvoux et al., 2009). In fact, the level of estrogen in endometriosis lesions were related to pain symptoms in patients with endometriosis while blood levels of estrogen were not (Zhu et al., 2018).

In addition, nerve fibers in endometriosis lesions have been shown to “release neural peptides such as nerve growth factor and substance P” that in turn activate mast cells to release those proinflammatory substances “which contributes to the development of pain and hyperalgesia in patients with endometriosis” (Zhu & Zhang, 2013). Those granules released by mast cells can contribute to new blood vessel growth, more inflammation, and nerve growth, which can lead to pain (Graziottin, 2009). This persistent inflammation from endometriosis lesions “intensifies neurogenic inflammation and tissue damage” leading to “progressive functional and anatomic damage associated with prominent tissue scarring, exemplified by the natural history of endometriosis” and “up-regulation of nerve pain” (Graziottin, 2009).

So, mast cells are recruited to endometriosis lesions, respond to the higher local estrogen and other inflammatory conditions, release their proinflammatory substances which can lead to pain and scarring. This effect of mast cells is associated in other pain syndromes as well, such as interstitial cystitis, IBS, vulvodynia, complex regional pain syndrome, migraines, and fibromyalgia (Aich et al., 2015).

References

Aich, A., Afrin, L. B., & Gupta, K. (2015). Mast cell-mediated mechanisms of nociception. International journal of molecular sciences, 16(12), 29069-29092. Retrieved from https://doi.org/10.3390/ijms161226151

Delvoux, B., Groothuis, P., D’Hooghe, T., Kyama, C., Dunselman, G., & Romano, A. (2009). Increased production of 17β-estradiol in endometriosis lesions is the result of impaired metabolism. The Journal of Clinical Endocrinology & Metabolism, 94(3), 876-883. Retrieved from https://academic.oup.com/jcem/article/94/3/876/2596530

Graziottin, A., Skaper, S. D., & Fusco, M. (2014). Mast cells in chronic inflammation, pelvic pain and depression in women. Gynecological Endocrinology, 30(7), 472-477. Retrieved from https://www.tandfonline.com/doi/abs/10.3109/09513590.2014.911280

Graziottin, A. (2009). Mast cells and their role in sexual pain disorders. Female Sexual Pain Disorders, 176. Retrieved from https://www.fondazionegraziottin.org/ew/ew_articolo/1820%20-%20mast%20cells%20and%20SPD.pdf

Hart, D. A. (2015). Curbing inflammation in multiple sclerosis and endometriosis: should mast cells be targeted?. International journal of inflammation, 2015. Retrieved from https://www.hindawi.com/journals/iji/2015/452095/

Indraccolo, U., & Barbieri, F. (2010). Effect of palmitoylethanolamide–polydatin combination on chronic pelvic pain associated with endometriosis: Preliminary observations. European Journal of Obstetrics & Gynecology and Reproductive Biology, 150(1), 76-79. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0301211510000424

Sugamata, M., Ihara, T., & Uchiide, I. (2005). Increase of activated mast cells in human endometriosis. American journal of reproductive immunology, 53(3), 120-125. Retrieved from https://doi.org/10.1111/j.1600-0897.2005.00254.x

Weller, C. (n.d.). Mast cells. Retrieved from https://www.immunology.org/public-information/bitesized-immunology/cells/mast-cells

Zhu, T. H., Ding, S. J., Li, T. T., Zhu, L. B., Huang, X. F., & Zhang, X. M. (2018). Estrogen is an important mediator of mast cell activation in ovarian endometriomas. Reproduction, 155(1), 73-83. Retrieved from https://doi.org/10.1530/REP-17-0457

Zhu, L., & Zhang, X. (2013). Research advances on the role of mast cells in pelvic pain of endometriosis. Journal of Zhejiang University (Medical Science), 42(4), 461. DOI: 10.3785/j.issn.1008-9292.2013.04.015

3 years ago Endometriosis , Endometriosis Education

FAQ’s, Podcasts, Resources About Endo, and More!

You can find a diverse gathering of information about endometriosis on our website. We have some information you may not have thought to look for or were unsure of where it might located. Here’s a glimpse at a few of the resources you can find:

In our Resources section, you will find material that includes a wide variety of topics and links to help you on your endometriosis journey.

• If you prefer to listen instead of read, we have several links to podcasts, videos, and webinars.
• If you are looking for info on advocacy and other helpful sources, then see here.
• Need information about navigating insurance? We have info on what to know to help be your own best advocate- as well as info for those on Tricare
• We have topics specific for teens, infertility, pregnancy, and LGBTQIA+
• Tips for topics such as keeping track of your personal medical history, things to pack for surgery/hospital, what to expect before and after surgery, and more.
• Resources for those in the UK and Australia
• and more!

In our Frequently Asked Questions section, you can find answers to questions such as:

•  Is that really true? Info on Myths and Misinformation
• Is endometriosis an autoimmune disease?
• Does endometriosis increase my risk of cancer?
• Is There Microscopic or Occult Endometriosis
• Can endometriosis persist after hysterectomy/ovary removal/menopause?
• Is there a genetic component to endometriosis?
• Is there a link between heart disease and endometriosis?
• What effects can long term low estrogen cause?

Endometriosis has several related conditions that can cause similar symptoms. While treating endometriosis is important, it is equally important to treat these other conditions that might be present in order to find relief.

• Adenomyosis
• Endometrial/Uterine Polyps
• Interstitial Cystitis/Bladder Pain Syndrome
• Pelvic Floor Dysfunction
• Fibroids (Leiomyomas)
• Polycystic Ovarian Syndrome (PCOS)
• Pudendal Neuralgia and Vulvodynia
• Pelvic Congestion Syndrome
• Occult Hernia
• Migraines and Endometriosis

Information about endometriosis itself and its treatment can be found throughout the website.

• What makes endometriosis different from the lining of the uterus? Differences in how endometriosis looks and behaves (how it behaves in response to estrogen and progesterone, can make its own nerves and blood vessels, as well as other differences)
• Where can endometriosis be found in the body? (including some weird places)
• How does endometriosis start?
• What are the symptoms of endometriosis?
• How is it diagnosed? How useful are an ultrasound, MRI, or labwork with endometriosis?
• Why is excision surgery recommended? Why should I see a specialist?
• What treatment options are there?

You’ll find all these topics and more on the website. Start exploring!

4 years ago Endometriosis , Endometriosis Education

Your Story Isn’t Over; Mental Health Awareness

May is mental health awareness month and a good time to shine a light on the affects that endometriosis has on our mental health. A significant number of people worldwide suffer from a mental health disorder. While mental health covers a wide spectrum of disorders, two of the most pervasive are anxiety and depression (NAMI, 2021). Both of these not only affect a large portion of the population in general, but also can be found in higher rates in those with chronic illnesses- especially those involving chronic pain (Li et al., 2018).

Endometriosis has been associated “a wide spectrum of different types of pain, ranging from severe dysmenorrhea to chronic pelvic and other comorbid pain conditions” and those with endometriosis have an “elevated likelihood of developing depression and anxiety disorders” (Li et al., 2018). Endometriosis greatly affects quality of life, relationships, stress, professional life, and many other factors that can play into depression and anxiety (Donatti et al., 2017; Lagana et al., 2017). While these factors can play into depression and anxiety, research has suggested that endometriosis leads to specific changes in the brain that are associated with pain, anxiety, and depression (Lima Filho et al., 2019). For example, in a study done on mice, researchers found that “endometriosis led to changes in expression of several genes in the brain regions associated with pain, anxiety, and depression” (Li et al., 2018). In addition, some studies have shown a shared genetic predisposition between depression and endometriosis (Adewuyi et al., 2021).

Our mental health is important. As chronic pelvic pain from endometriosis can affect our mental health, it is important to address the underlying cause (Van den Broeck et al., 2013). But we also need to seek care for our mental health in other ways as well. We can’t do it all alone and seeking help from a professional for our mental health is every bit as important as seeking help for a broken bone. Just as we do physical therapy to help our musculoskeletal system, counseling and cognitive behavioral therapy is like physical therapy for our mental well-being. Endometriosis impacts our relationships, our ability to work, our sense of self, and pretty much every aspect of our lives. Seeking help to cope is not a sign of weakness, but of strength. One of my favorite symbols for mental health is from The Semicolon Project. The semicolon is a sign that the sentence, the story, isn’t over yet. Know that you are not alone, and your story isn’t over yet.

National Suicide Prevention Hotline: 1-800-273-8255

References

Adewuyi, E. O., Mehta, D., Sapkota, Y., Auta, A., Yoshihara, K., Nyegaard, M., … & Nyholt, D. R. (2021). Genetic analysis of endometriosis and depression identifies shared loci and implicates causal links with gastric mucosa abnormality. Human Genetics, 140(3), 529-552. doi: 10.1007/s00439-020-02223-6

Donatti, L., Ramos, D. G., Andres, M. D. P., Passman, L. J., & Podgaec, S. (2017). Patients with endometriosis using positive coping strategies have less depression, stress and pelvic pain. Einstein (São Paulo), 15(1), 65-70. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5433310/

Laganà, A. S., La Rosa, V. L., Rapisarda, A. M. C., Valenti, G., Sapia, F., Chiofalo, B., … & Vitale, S. G. (2017). Anxiety and depression in patients with endometriosis: impact and management challenges. International journal of women’s health, 9, 323. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5440042/

Li, T., Mamillapalli, R., Ding, S., Chang, H., Liu, Z. W., Gao, X. B., & Taylor, H. S. (2018). Endometriosis alters brain electrophysiology, gene expression and increases pain sensitization, anxiety, and depression in female mice. Biology of reproduction, 99(2), 349-359. Retrieved from  https://doi.org/10.1093/biolre/ioy035

Lima Filho, P. W. L., Chaves Filho, A. J. M., Vieira, C. F. X., de Queiroz Oliveira, T., Soares, M. V. R., Jucá, P. M., … & das Chagas Medeiros, F. (2019). Peritoneal endometriosis induces time-related depressive-and anxiety-like alterations in female rats: involvement of hippocampal pro-oxidative and BDNF alterations. Metabolic brain disease, 34(3), 909-925. Retrieved from https://doi.org/10.1007/s11011-019-00397-1

National Alliance on Mental Illness (NAMI). (2021). Mental health by the numbers. Retrieved from https://www.nami.org/mhstats

Van den Broeck, U., Meuleman, C., Tomassetti, C., D’Hoore, A., Wolthuis, A., Van Cleynenbreugel, B., … & D’Hooghe, T. (2013). Effect of laparoscopic surgery for moderate and severe endometriosis on depression, relationship satisfaction and sexual functioning: comparison of patients with and without bowel resection. Human Reproduction, 28(9), 2389-2397. Retrieved from https://doi.org/10.1093/humrep/det260

4 years ago Endometriosis , Endometriosis Education

Endometriosis after a hysterectomy or menopause

what are the symptoms of endometriosis after menopause?

Endometriosis does not “die off” or go away with a hysterectomy or menopause. Some people do find some relief from their symptoms, but endometriosis can still persist. Endometriosis often has several related or comorbid conditions (such as adenomyosis or fibroids) that share similar symptoms (pain with menstruation, chronic pelvic pain, etc.) that a hysterectomy might help – but it may not stop your symptoms from endometriosis. Endometriosis exists outside of the uterus and can still respond to hormonal influences (Bulun et al., 2002).  Even if your ovaries are removed, endometriosis lesions can produce their own estrogen (Huhtinen et al., 2012). This is important to note because estrogen causes endometriosis lesions to grow and persist (Bulun et al., 2012). So even with the removal of the ovaries or with menopause, endometriosis can sustain itself.

There is high recurrence of symptoms with the removal of just the uterus; but, even with the removal of the ovaries, any endometriosis lesions left behind can continue to grow, progress, and cause symptoms (Clayton et al., 1999; Inceboz, 2015; Khan et al., 2013; Rizk et al., 2014). So, if you have your uterus and ovaries removed for other conditions, it is best that all endometriosis lesions be removed as well. The skill of the surgeon at removing all endometriosis is important. Rizk et al. (2014) report that “the recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease.”

Endometriosis has been found in about 2.2% of postmenopausal women (Zanello et al., 2019). Inceboz (2015) states that “endometriotic lesions remained biologically active, with proliferative activity and preserved hormonal responsiveness, even in the lower estrogenic environment in the postmenopause.” Postmenopausal endometriosis should be managed surgically according to Streuli et al. (2017) and Zanello et al. (2019).

What about hormone replacement if you are in menopause or have had your uterus and ovaries removed? Hormone replacement therapy (HRT) is important as “the hypo-estrogenic state was demonstrated to be a risk factor for cardiovascular and bone disease” (Zanello et al., 2019). While HRT has not been concluded useful for preventing heart disease, it can be useful for those at a higher risk of osteoporosis (Zanello et al., 2019). There isn’t much data available to help guide the decision, but Zanello et al. (2019) report that “in young menopausal women with premature or surgically-induced menopause the benefits of HRT probably overcome the risks” and “in women with residual endometriosis after surgery, the use of HRT should be discussed and the risk of recurrence should be carefully considered before starting an estrogen-based replacement therapy”.  Rizk et al. (2014) also states that “the general consensus is that the benefits outweigh the risks” and that starting HRT soon after menopause does not seem to have a faster rate of recurrence. Zanello et al. (2019) concludes that “based on low-grade evidence in the literature, we recommend prescribing combined HRT instead of unopposed estrogen.” It also depends on if your endometriosis was removed.

Does Endometriosis Go Away After Menopause?

endometriosis symptoms after menopause

the-aggravating-endometrioma

References

Bulun, S. E., Gurates, B., Fang, Z., Tamura, M., Sebastian, S., Zhou, J., … & Yang, S. (2002). Mechanisms of excessive estrogen formation in endometriosis. Journal of reproductive immunology, 55(1-2), 21-33. Retrieved from https://doi.org/10.1016/S0165-0378(01)00132-2

Bulun, S. E., Monsavais, D., Pavone, M. E., Dyson, M., Xue, Q., Attar, E., … & Su, E. J. (2012, January). Role of estrogen receptor-β in endometriosis. In Seminars in reproductive medicine (Vol. 30, No. 01, pp. 39-45). Thieme Medical Publishers. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4034571/…

Clayton, R. D., Hawe, J. A., Love, J. C., Wilkinson, N., & Garry, R. (1999). Recurrent pain after hysterectomy and bilateral salpingo‐oophorectomy for endometriosis: evaluation of laparoscopic excision of residual endometriosis. BJOG: An International Journal of Obstetrics & Gynaecology, 106(7), 740-744. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/j.1471-0528.1999.tb08377.x?fbclid=IwAR04aFoLsukqsYutNPNXtJNZpKLNEJbgOOon334NW8D7wvwzZMWaS2YaZts  

Huhtinen, K., Ståhle, M., Perheentupa, A., & Poutanen, M. (2012). Estrogen biosynthesis and signaling in endometriosis. Molecular and cellular endocrinology, 358(2), 146-154. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0303720711005041

Inceboz, U. (2015). Endometriosis after menopause. Women’s Health, 11(5), 711-715. Retreived from https://journals.sagepub.com/doi/full/10.2217/whe.15.59

Khan, K. N., Kitajima, M., Fujishita, A., Nakashima, M., & Masuzaki, H. (2013). Toll‐like receptor system and endometriosis. Journal of Obstetrics and Gynaecology Research, 39(8), 1281-1292.  Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/jog.12117

Rizk, B., Fischer, A. S., Lotfy, H. A., Turki, R., Zahed, H. A., Malik, R., … & Herrera, D. (2014). Recurrence of endometriosis after hysterectomy. Facts, views & vision in ObGyn, 6(4), 219. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4286861/ 

Zanello, M., Borghese, G., Manzara, F., Degli Esposti, E., Moro, E., Raimondo, D., … & Seracchioli, R. (2019). Hormonal replacement therapy in menopausal women with history of endometriosis: a review of literature. Medicina, 55(8), 477. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6723930/

4 years ago Endometriosis , Endometriosis Education

Endometriosis and Pregnancy

Endometriosis is often associated with infertility. Infertility does not mean you cannot get pregnant, but rather there is a delay in achieving pregnancy. It is technically defined as not achieving a “clinical pregnancy after 12 months or more of regular unprotected sexual intercourse” (World Health Organization, n.d.). An estimated 30–50% of women with endometriosis are reported to have difficulty with infertility (Macer & Taylor, 2012). In addition, endometriosis does not have to be an “advanced stage” for it to affect fertility (Bloski & Pierson, 2008).

“Current evidence indicates that suppressive medical treatment of endometriosis does not benefit fertility and should not be used for this indication alone. Surgery is probably efficacious for all stages of the disease.”

(Ozkan, Murk, & Arici, 2008)

With infertility being related to endometriosis, it is unbelievable that pregnancy might still be recommended as a treatment for endometriosis. While some may have a temporary relief of symptoms, others can experience an increase. In fact, some “imaging and histopathology studies of endometriotic lesions during pregnancy show that they may grow rapidly during pregnancy” (Leeners & Farquhar, 2019). Pregnancy will not treat or cure endometriosis. Research has stated that “women aiming for pregnancy on the background of endometriosis should not be told that pregnancy may be a strategy for managing symptoms and reducing progression of the disease” (Leeners et al., 2018). This is echoed again by Leeners and Farquhar (2019) who point out that “the decision to have children should not be influenced by any perceived benefit of improving endometriosis but should be made solely on the wish for parenthood.”

While the overall risk is still low, endometriosis has been associated with some difficulties during pregnancy. Zullo et al. (2017) looked at 24 studies involving almost 2 million women with endometriosis to consider the possible effects of endometriosis during pregnancy . They found that “women with endometriosis have a statistically significantly higher risk of preterm birth, miscarriage, placenta previa, small for gestational age infants, and cesarean delivery” compared to healthy controls (Zullo et al., 2017). Zullo et al. (2017) did not find any significant association with gestational hypertension and preeclampsia with endometriosis; however, adenomyosis has been found to have some correlation with pregnancy-induced hypertension and preeclampsia (Porpora et al., 2020). Adenomyosis has been found to result in a higher likelihood of preterm birth, small for gestational age, and pre-eclampsia (Razavi et al., 2019). Adenomyosis and endometriosis frequently coexist, so it can be hard to determine how much is one or the other causing these effects (Choi et al., 2017).

On a positive note, Porpora et al. (2020) noted that “no difference in fetal outcome was found” and concluded that “endometriosis does not seem to influence fetal well-being”. This was also found by Uccella et al. (2019), stating that “neonatal outcomes are unaffected by the presence of the disease”. Again, a normal pregnancy is still highly possible. For more information on this topic, see Pregnancy and Endometriosis.

References

Bloski, T., & Pierson, R. (2008). Endometriosis and chronic pelvic pain: unraveling the mystery behind this complex condition. Nursing for women’s health, 12(5), 382-395. doi: 10.1111/j.1751-486X.2008.00362.x

Choi, E. J., Cho, S. B., Lee, S. R., Lim, Y. M., Jeong, K., Moon, H. S., & Chung, H. (2017). Comorbidity of gynecological and non-gynecological diseases with adenomyosis and endometriosis. Obstetrics & gynecology science, 60(6), 579. Retrieved from https://synapse.koreamed.org/upload/SynapseData/PDFData/3021ogs/ogs-60-579.pdf

Leeners, B., Damaso, F., Ochsenbein-Kölble, N., & Farquhar, C. (2018). The effect of pregnancy on endometriosis—facts or fiction?. Human reproduction update, 24(3), 290-299. Retrieved from https://doi.org/10.1093/humupd/dmy004

Leeners, B., & Farquhar, C. M. (2019). Benefits of pregnancy on endometriosis: can we dispel the myths?. Fertility and sterility, 112(2), 226-227. Retrieved from https://doi.org/10.1016/j.fertnstert.2019.06.002

Macer, M. L., & Taylor, H. S. (2012). Endometriosis and infertility: a review of the pathogenesis and treatment of endometriosis-associated infertility. Obstetrics and Gynecology Clinics, 39(4), 535-549. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538128/pdf/nihms422379.pdf

Ozkan, S., Murk, W., & Arici, A. (2008). Endometriosis and infertility: epidemiology and evidence‐based treatments. Annals of the New York Academy of Sciences, 1127(1), 92-100. DOI: 10.1196/annals.1434.007

Porpora, M. G., Tomao, F., Ticino, A., Piacenti, I., Scaramuzzino, S., Simonetti, S., … & Benedetti Panici, P. (2020). Endometriosis and pregnancy: a single institution experience. International journal of environmental research and public health, 17(2), 401. Retrieved from https://www.mdpi.com/1660-4601/17/2/401

Razavi, M., Maleki‐Hajiagha, A., Sepidarkish, M., Rouholamin, S., Almasi‐Hashiani, A., & Rezaeinejad, M. (2019). Systematic review and meta‐analysis of adverse pregnancy outcomes after uterine adenomyosis. International Journal of Gynecology & Obstetrics, 145(2), 149-157. Retrieved from https://www.endometriozisdernegi.org/konu/dosyalar/pdf/makale_ozetleri/Mayis2019/makale17.pdf

Uccella, S., Manzoni, P., Cromi, A., Marconi, N., Gisone, B., Miraglia, A., … & Ghezzi, F. (2019). Pregnancy after endometriosis: maternal and neonatal outcomes according to the location of the disease. American journal of perinatology, 36(S 02), S91-S98. DOI: 10.1055/s-0039-1692130

World Health Organization. (n.d.).Infertility definitions and terminology. Retrieved from https://www.who.int/teams/sexual-and-reproductive-health-and-research/areas-of-work/fertility-care/infertility-definitions-and-terminology

Zullo, F., Spagnolo, E., Saccone, G., Acunzo, M., Xodo, S., Ceccaroni, M., & Berghella, V. (2017). Endometriosis and obstetrics complications: a systematic review and meta-analysis. Fertility and sterility, 108(4), 667-672. Retrieved from https://doi.org/10.1016/j.fertnstert.2017.07.019

4 years ago Endometriosis , Endometriosis Education

How to Study a Research Study

We post a lot of links and references to research studies, but it can be difficult to interpret them. Even harder is determining how relevant those studies are. Here are a few things to consider as you look at research on endometriosis.

When you look at research studies, you first want to assess how strong of evidence it is presenting. One quick way to tell is by the type of study. The University of Alabama at Birmingham (2021) has a good list of the types of studies, going from strongest evidence to weakest. In short:

“The most scientific, rigorous study designs are randomized controlled trials, systematic reviews, and meta-analysis. These types of studies are thought to provide stronger levels of evidence because they reduce, but do not eliminate, potential biases and confounders.”

(University of Alabama at Birmingham, 2021)

Bias is any errors in design that might throw off the conclusions. Bias, whether intentional or unintentional, can occur in “data collection, data analysis, interpretation and publication which can cause false conclusions” (Simundic, 2013). Find out more about that here. Confounding factors are any variables not factored into the study that can muddle with the interpretation of the results- “they can suggest there is correlation when in fact there isn’t” (Statistics How To, n.d.). This is important when looking at the conclusions drawn. For instance, in last week’s newsletter about endometriomas, we noted that recurrence rates are hard to tell from studies because their definition of “recurrence” varies widely from study to study (was it pathology from surgery or recurrence of symptoms that might actually be from a related condition?). You also want to look how large the study was, did it include several different variables, was it limited to a specific group, how was the study funded and what ethical considerations are given, etc. One tool for helping to analyze such factors can be found here.

Most studies have a short summary at the beginning that can be helpful. For instance, let’s look at this study from Shigesi et al. (2019) found here. The title itself tells us it is a systematic review and meta-analysis: “The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis”. So, we’re starting off good.

The study then starts with the summary called an abstract- which tells us the background of the problem they want to study, how they performed the study, the outcomes they found, and a discussion on what those outcomes mean. In the background, they state that “an association between endometriosis and autoimmune diseases has been proposed”, so that is what they are studying. Then they detail how they are going to study it- what databases they are using to look for information, what they are going to include or exclude from their study, and the statistical analysis they will utilize. They next present the outcomes: “the studies quantified an association between endometriosis and several autoimmune diseases, including systemic lupus erythematosus (SLE), Sjögren’s syndrome (SS), rheumatoid arthritis (RA), autoimmune thyroid disorder, coeliac disease (CLD), multiple sclerosis (MS), inflammatory bowel disease (IBD), and Addison’s disease”. But wait! There is a caveat they note- “the quality of the evidence was generally poor due to the high risk of bias in the majority of the chosen study designs and statistical analyses” and that “only 5 of the 26 studies could provide high-quality evidence”. Then they present their conclusions of how this information might be useful- “the observed associations between endometriosis and autoimmune diseases suggest that clinicians need to be aware of the potential coexistence of endometriosis and autoimmune diseases when either is diagnosed”. They end by giving suggestions for future research that might strengthen the body of evidence for this. In short, after looking deeper into the association, the evidence available is overall poor so more research is warranted.

This is by no means a comprehensive review of looking at research study but rather a brief intro. There are many available resources on the internet for looking more in depth about how to assess research and draw conclusions from it.

References

Shigesi, N., Kvaskoff, M., Kirtley, S., Feng, Q., Fang, H., Knight, J. C., … & Becker, C. M. (2019). The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis. Human reproduction update, 25(4), 486-503. Retrieved from https://academic.oup.com/humupd/article/25/4/486/5518352?login=true

Simundic, A. M. (2013). Bias in research. Biochemia medica, 23(1), 12-15. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3900086/

Statistics How To. (n.d.). Confounding Variable: Simple Definition and Example. Retrieved from https://www.statisticshowto.com/experimental-design/confounding-variable/

University of Alabama at Birmingham. (2021). Study Types- Definitions. Retrieved from https://guides.library.uab.edu/ebd/evidencestrength

4 years ago Endometriosis , Endometriosis Education

The Aggravating Endometrioma

What are endometriomas anyway? Endometriosis is classified into three main types: superficial peritoneal endometriosis, deep infiltrating endometriosis, and endometriomas (see more about that here).  Endometriomas are ovarian cysts lined by endometriotic tissue and can be filled with blood (why they are at times called “chocolate cysts”). Like the other types of endometriosis, no one knows for sure how they form. It has been theorized that endometriosis tissue on the surface of the ovary invades and forms a cyst like formation or they start as a functional ovarian cyst with gradual infiltration of endometriotic tissue. Endometriomas have been found in up to 44% of those with endometriosis and are associated with deep infiltrating endometriosis (Cranney, Condous, & Reid, 2017).

Endometriomas can be suspected with ultrasound or MRI, but as with other types of endometriosis, surgery is gold standard for diagnosis (Gałczyński et al., 2019). Endometrioma treatment can often be focused on the effect on fertility, so it is important to consider your goals when looking at treatment options. While medications are used to manage endometriomas, “endometriomas do not respond to medical therapy alone, thus usually surgical treatment is necessary” (Gałczyński et al., 2019). Many may be hesitant to perform surgery for fear of loss of healthy ovarian function and may put off surgery until the endometrioma reaches a certain size. However, Gałczyński et al. (2019) reports that treating “early-stage endometrioma provides less damage to the ovary by a less invasive surgical procedure which decreases the risk of iatrogenic premature ovarian failure” and that “long-term ovarian endometriosis leads to persistent inflammation” that can lead to loss of ovarian function. Skill of the surgeon is important in this aspect.

Gałczyński et al. (2019) reports that “the level of expertise in endometriotic surgery is inversely correlated with inadvertent removal of healthy ovarian tissue along with the endometrioma capsule”. There are multiple surgical techniques that can be used to treat endometriomas and there is no consensus on the best method, although ovarian cystectomy (removal of the ovarian cyst) is the preferred method based on studies (Pais et al., 2021). One recently published study cites “excisional surgery allows for pain resolution, a high rate of spontaneous pregnancies and a lower recurrence rate of ovarian cysts when compared to drainage and ablation techniques” (Angioni et al., 2021).

The aggravating thing about endometriomas is the likelihood of recurrence. It can hard to tell true recurrence rates from studies because “recurrence is variously defined in the literature as the relapse of pain, clinical or instrumental detection of an endometriotic lesion, repeat rise in CA 125 levels, or evidence of recurrence found during repeat surgery,” which results in the wide range of reported recurrence in studies (Ceccaroni et al., 2019). In addition, the method of surgical treatment has a bearing on recurrence rate (excision versus draining etc.). One study reported recurrence rates to be “24.2% for patients aged 20–30 years, 17.7% for 31–40 years, and 7.9% for 41–45 years” (Li et al., 2019). Other studies have echoed that younger age was linked to increased recurrence (Gałczyński et al., 2019). While younger age seems to have a direct correlation with recurrence, other factors not as much. For instance, Gałczyński et al. (2019) reports that the “diameter of the tumor, stage of endometriosis, coexistence of deep-infiltrating endometriosis, or uni- or bi-lateral involvement of ovaries were all not associated with the risk of recurrence” and that the “median time to recurrence was 53 months”.

There is also controversy about the use of hormonal suppression to prevent recurrence. Some studies and a meta-analysis report that there is not enough evidence for the use of medications to help prevent recurrence, while others indicate that it may delay but will not prevent recurrence (Gałczyński et al., 2019; Li et al., 2019; Wattanayingcharoenchai et al., 2021). Confusing? Others agree that it is- with one commentary stating that “so what are we to believe and what should we advise women affected by endometriosis to do?” (Saridogan, 2020). In the end, we each have to do our research, look at our individual goals, and decide what is best for our unique situation.

Endometriosis after a hysterectomy or menopause

References

Angioni, S., Scicchitano, F., Sigilli, M., Succu, A. G., Saponara, S., & D’Alterio, M. N. (2021). Impact of Endometrioma Surgery on Ovarian Reserve. In Endometriosis Pathogenesis, Clinical Impact and Management (pp. 73-81). Springer, Cham. Retrieved from https://link.springer.com/chapter/10.1007/978-3-030-57866-4_8

Ceccaroni, M., Bounous, V. E., Clarizia, R., Mautone, D., & Mabrouk, M. (2019). Recurrent endometriosis: a battle against an unknown enemy. The European Journal of Contraception & Reproductive Health Care, 24(6), 464-474.  Retrieved from https://www.tandfonline.com/doi/abs/10.1080/13625187.2019.1662391

Cranney, R., Condous, G., & Reid, S. (2017). An update on the diagnosis, surgical management, and fertility outcomes for women with endometrioma. Acta obstetricia et gynecologica Scandinavica, 96(6), 633-643. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/aogs.13114

Gałczyński, K., Jóźwik, M., Lewkowicz, D., Semczuk-Sikora, A., & Semczuk, A. (2019). Ovarian endometrioma–a possible finding in adolescent girls and young women: a mini-review. Journal of ovarian research, 12(1), 1-8. Retrieved from https://ovarianresearch.biomedcentral.com/articles/10.1186/s13048-019-0582-5

Li, X. Y., Chao, X. P., Leng, J. H., Zhang, W., Zhang, J. J., Dai, Y., … & Wu, Y. S. (2019). Risk factors for postoperative recurrence of ovarian endometriosis: long-term follow-up of 358 women. Journal of ovarian research, 12(1), 1-10. Retrieved from https://link.springer.com/article/10.1186/s13048-019-0552-y

Pais, A. S., Flagothier, C., Tebache, L., Almeida Santos, T., & Nisolle, M. (2021). Impact of Surgical Management of Endometrioma on AMH Levels and Pregnancy Rates: A Review of Recent Literature. Journal of Clinical Medicine, 10(3), 414. Retrieved from https://www.mdpi.com/2077-0383/10/3/414

Saridogan, E. (2020). Postoperative medical therapies for the prevention of endometrioma recurrence–do we now have the final answer?(Mini-commentary on BJOG-19-1705. R2). Authorea Preprints. Retrieved from https://d197for5662m48.cloudfront.net/documents/publicationstatus/41937/preprint_pdf/d4903f81caf3e8838e672d7631e6b8bd.pdf

Wattanayingcharoenchai, R., Rattanasiri, S., Charakorn, C., Attia, J., & Thakkinstian, A. (2021). Postoperative hormonal treatment for prevention of endometrioma recurrence after ovarian cystectomy: a systematic review and network meta‐analysis. BJOG: An International Journal of Obstetrics & Gynaecology, 128(1), 25-35. Retrieved from https://pubmed.ncbi.nlm.nih.gov/32558987/

4 years ago Endometriosis , Endometriosis Education

Celiac Disease and Endometriosis

Much like thyroid disease and endometriosis, there are not many studies looking at an association between celiac disease and endometriosis. One study found the “risk of endometriosis in patients with [celiac disease] was 112/100 000 person” (Stephansson et el., 2011). Another noted that celiac disease “is common in this population group [women with endometriosis and infertility] (2.5%) and may be clinically relevant” (Aguiar et al., 2009). Another study noted a slightly increased risk of celiac disease in those with endometriosis (“Celiac disease was diagnosed in 5 of 223 women with endometriosis and in 2 of 246 controls (2.2% versus 0.8%)”) (Seracchiolo et al., 2014). Some have had positive results on endometriosis symptoms from following a gluten free diet (Marziali et al., 2012).

On the flip side, celiac disease can present with symptoms similar to endometriosis. “Celiac disease has also been associated with chronic pelvic pain, including dysmenorrhea and deep dyspareunia” and “patients with atypical pelvic pain, particularly with GI components, may also benefit from screening” (Ory & Christie, 2013). This points out the importance of looking beyond the diagnosis of endometriosis with recurring symptoms in order to rule out other health issues that can mimic endometriosis symptoms.

References

Aguiar, F. M., Melo, S. B., Galvao, L. C., Rosa-e-Silva, J. C., dos Reis, R. M., & Ferriani, R. A. (2009). Serological testing for celiac disease in women with endometriosis. A pilot study. Clinical and experimental obstetrics & gynecology, 36(1), 23-25. Retrieved from https://pubmed.ncbi.nlm.nih.gov/19400413/

Marziali, M., Venza, M., Lazzaro, S., Lazzaro, A., Micossi, C., & Stolfi, V. M. (2012). Gluten-free diet: a new strategy for management of painful endometriosis related symptoms. Minerva Chir, 67(6), 499-504. Retrieved from https://www.minervamedica.it/en/journals/minerva-surgery/article.php?cod=R06Y2012N06A0499

Ory, S. J., & Christie, D. R. (2013). Reproductive effects of celiac disease. Contemporary OB/GYN, 58(4), 34. Retrieved from https://www.contemporaryobgyn.net/view/reproductive-effects-celiac-disease

Seracchioli, R., Montanari, G., Mabrouk, M., & Nassif, J. (2014). Endometriosis: novel models, diagnosis, and treatment. Retrieved from https://doi.org/10.1155/2014/236821

Stephansson, O., Falconer, H., & Ludvigsson, J. F. (2011). Risk of endometriosis in 11 000 women with celiac disease. Human reproduction, 26(10), 2896-2901. Retrieved from https://doi.org/10.1093/humrep/der263

4 years ago Endometriosis , Endometriosis Education

Keep Endometriosis Awareness Going

As we come to the end of endometriosis awareness month, those of us with endometriosis knows it doesn’t end in March. Raising awareness and fighting against misinformation is a constant effort. Please feel free to share links from the webpage. The more we share, the more awareness and up-to-date information is out there for others. It can be discouraging to see so much of the same old misinformation perpetuated that can cause others to suffer as we have. Let’s spread hope!

We have collected all the infographs shared on Nancy’s Nook Facebook page and have sprinkled them throughout the website so that you can share the infograph and the link to more information. All the infographs are also collected here.

Endometriosis Quick Facts to Share is also another good resource to share. One of my favorites to reference to is the Myths and Misinformation page. Keep the awareness going, because endometriosis doesn’t stop in March.

4 years ago Endometriosis , Endometriosis Education

The Personal Burden of Endometriosis

Last week we looked at the direct financial burden of endometriosis, including the loss of education, loss of productivity at work and home, and loss of income. Today we look at the personal burden of endometriosis- the altered relationships with family and friends, the pain and suffering, the ill effects on mental health, and the loss of who we feel we are as a person because of it.

Pain and fatigue can limit our ability to function and the quality of our life experience (Missmer et al., 2021). Our ability to maintain relationships can be difficult, especially when others do not understand the impact that endometriosis has on us. Much research has shown the effect on intimate partner relationships due to the interference with sexual health (Missmer et al., 2021). Not as many studies have been done on the effects of parenting with endometriosis; however, in our Facebook group Nancy’s Nook, many of you have shared the significant effect endometriosis has had on the ability to function as a parent. These limitations imposed from our illness can affect our mental health as well.

In studies, people with endometriosis express “feelings of worthlessness, guilt, and frustration connected with disease-related limitations on participation in daily activities, social functioning, independence, and interpersonal relationships” as well as frustration “from a woman’s inability to manage or predict her pain and the feeling that endometriosis/endometriosis-associated pain controls her life” (Missmer et al., 2021). Add to this the burden of the “perception that others (even healthcare professionals) consider what they are experiencing to be ‘all in their heads’” (Missmer et al., 2021). The struggle is real. And it is no wonder that many feel a loss of who they are as a person because of it.

On a positive note, a systematic review and meta-analysis, as well as other studies, reveal that surgery for endometriosis does improve quality of life (Arcoverde et al., 2019; Parra et al., 2021). Another study reports that “laparoscopic surgery is associated with improved quality of life and emotional well-being compared to medical therapies” and cautions that “although the GnRH agonists are effective in reducing endometriosis symptoms, they are often associated with anxiety and depression during treatment” (Laganà et al., 2017). To help manage symptoms, one study that surveyed people with endometriosis found that “heat (70%), rest (68%), and meditation or breathing exercises (47%)” helped and to a lesser degree “yoga/Pilates, stretching, and exercise” (Armour et al., 2019). Changes in diet, individualized to your specific needs, can help with symptom management for some (Karlsson, Patel, & Premberg, 2020). Other things such as acupuncture have been helpful to some as well. Mental healthcare is important to our well-being and should not be neglected either.

The impact endometriosis has on our lives is significant. Know that you are not alone.

References

Arcoverde, F. V. L., de Paula Andres, M., Borrelli, G. M., de Almeida Barbosa, P., Abrão, M. S., & Kho, R. M. (2019). Surgery for endometriosis improves major domains of quality of life: a systematic review and meta-analysis. Journal of minimally invasive gynecology, 26(2), 266-278. Retrieved from https://doi.org/10.1016/j.jmig.2018.09.774

Armour, M., Sinclair, J., Chalmers, K. J., & Smith, C. A. (2019). Self-management strategies amongst Australian women with endometriosis: a national online survey. BMC complementary and alternative medicine, 19(1), 1-8. Retrieved from https://link.springer.com/article/10.1186/s12906-019-2431-x

Karlsson, J. V., Patel, H., & Premberg, A. (2020). Experiences of health after dietary changes in endometriosis: a qualitative interview study. BMJ open, 10(2), e032321. Retrieved from https://bmjopen.bmj.com/content/10/2/e032321.abstract

Laganà, A. S., La Rosa, V. L., Rapisarda, A. M. C., Valenti, G., Sapia, F., Chiofalo, B., … & Vitale, S. G. (2017). Anxiety and depression in patients with endometriosis: impact and management challenges. International journal of women’s health, 9, 323. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5440042/

Missmer, S. A., Tu, F. F., Agarwal, S. K., Chapron, C., Soliman, A. M., Chiuve, S., … & As-Sanie, S. (2021). Impact of Endometriosis on Life-Course Potential: A Narrative Review. International Journal of General Medicine, 14, 9. doi: 10.2147/IJGM.S261139

Parra, R. S., Feitosa, M. R., Camargo, H. P. D., Valério, F. P., Zanardi, J. V. C., Rocha, J. J. R. D., & Féres, O. (2021). The impact of laparoscopic surgery on the symptoms and wellbeing of patients with deep infiltrating endometriosis and bowel involvement. Journal of Psychosomatic Obstetrics & Gynecology, 42(1), 75-80. Retrieved from https://doi.org/10.1080/0167482X.2020.1773785

4 years ago Endometriosis , Endometriosis Education

The Costly Burden of Endometriosis

Endometriosis has a powerful cost in terms of quality of life. However, there are financial costs as well. Financial loss can come from direct healthcare costs as well as loss of productivity. The estimated annual cost between those two in 2009 was $69.4 billion (Della Corte et al., 2020).

Della Corte et al. (2020) notes that “in employed women with endometriosis, as a consequence of productivity loss of 6.3 h per week, the total loss per person is approximately $10,177.54 per year.” Chronic pain is a significant factor in the loss of productivity and Armour et al. (2019) concludes that “priority should be given to improving pain control in women with pelvic pain.” Similarly, Facchin et al. (2019) notes that those with greater severity of symptoms were less likely to be employed and state that “endometriosis symptoms may significantly affect women’s professional life, with important socioeconomic, legal, and political implications.” The loss of productivity doesn’t only affect the workplace. Soliman et al. (2017) found that there was loss of household productivity as well.

The loss of productivity can start with symptom onset, starting in adolescence. Missmer et al. (2021) state that “endometriosis (and its associated symptoms) has been shown to hamper educational attainment, hinder work productivity, alter career choices and success, impair social life and activities, affect family choices, induce strain in personal relationships, negatively influence mental and emotional health, and adversely affect [quality of life]. These multiple and pervasive effects are anticipated to materially alter the life-course trajectory of women with endometriosis.”

So how can we help this? Earlier diagnosis and successful treatment are key. Surrey et al. (2020) notes that “patients with endometriosis who had longer diagnostic delays had more pre-diagnosis endometriosis-related symptoms and higher pre-diagnosis healthcare utilization and costs compared with patients who were diagnosed earlier after symptom onset, providing evidence in support of earlier diagnosis.” On the same note, Missmer et al. (2021) state that “unfortunately, current practice models too often result in a prolonged delay between symptom onset, diagnosis, and treatment of endometriosis, thereby increasing the impact on the life course.” This is why we advocate and share evidence-based information- so that the next person doesn’t have their life so significantly altered by endometriosis.

References

Armour, M., Lawson, K., Wood, A., Smith, C. A., & Abbott, J. (2019). The cost of illness and economic burden of endometriosis and chronic pelvic pain in Australia: A national online survey. PloS one, 14(10), e0223316. Retrieved from https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0223316

Della Corte, L., Di Filippo, C., Gabrielli, O., Reppuccia, S., La Rosa, V. L., Ragusa, R., … & Giampaolino, P. (2020). The burden of endometriosis on women’s lifespan: a narrative overview on quality of life and psychosocial wellbeing. International Journal of Environmental Research and Public Health, 17(13), 4683. Retrieved from https://www.mdpi.com/1660-4601/17/13/4683/htm

Facchin, F., Buggio, L., Ottolini, F., Barbara, G., Saita, E., & Vercellini, P. (2019). Preliminary insights on the relation between endometriosis, pelvic pain, and employment. Gynecologic and obstetric investigation, 84(2), 190-195. Retrieved from https://doi.org/10.1159/000494254

Missmer, S. A., Tu, F. F., Agarwal, S. K., Chapron, C., Soliman, A. M., Chiuve, S., … & As-Sanie, S. (2021). Impact of Endometriosis on Life-Course Potential: A Narrative Review. International Journal of General Medicine, 14, 9. doi: 10.2147/IJGM.S261139

Soliman, A. M., Coyne, K. S., Gries, K. S., Castelli-Haley, J., Snabes, M. C., & Surrey, E. S. (2017). The effect of endometriosis symptoms on absenteeism and presenteeism in the workplace and at home. Journal of managed care & specialty pharmacy, 23(7), 745-754. Retrieved from https://doi.org/10.18553/jmcp.2017.23.7.745

Surrey, E., Soliman, A. M., Trenz, H., Blauer-Peterson, C., & Sluis, A. (2020). Impact of endometriosis diagnostic delays on healthcare resource utilization and costs. Advances in therapy, 37(3), 1087-1099. Retrieved from https://link.springer.com/article/10.1007/s12325-019-01215-x

4 years ago Endometriosis , Endometriosis Education

Endometriosis Quick Facts to Share

What is endometriosis?

Endometriosis is an inflammatory disorder where lesions similar to the lining of the uterus are located outside of the uterus. Endometriosis lesions have distinct differences from the lining of the uterus in both their form and function. The lesions release proinflammatory chemicals, can produce estrogen, can grow their own nerves and blood vessels, and can cause adhesions. It is usually located in the pelvis but has been found in other areas throughout the body. An estimated 11% of people assigned female at birth (including teenagers)have endometriosis- although it has been found in men on rare occasion.

What causes it?

No one knows. There is a genetic component, with higher rates seen in those with close relatives having endometriosis. It has been found in fetuses, suggesting it is present before birth.

What are its symptoms?

Endometriosis has many symptoms- from chronic pelvic pain to fatigue to infertility. Symptom severity does not necessarily correlate with the extent of lesions.

• Pain: chronic pelvic pain, pain with menses, pain in between menses, pain with exercise, pain with sex, pain with bowel movements, pain with urination, low back pain
• Fatigue
• Bowel symptoms similar to irritable bowel syndrome such as constipation, diarrhea, and bloating
• Infertility
• And many others

How is diagnosed?

Endometriosis is diagnosed with surgery, preferably with pathology from tissue samples. Some imaging, such as MRI’s and ultrasounds, can rule in endometriosis, but they cannot rule it out. The accuracy of diagnosis depends on the knowledge and skill of the provider.

How is it treated?

While there is no definitive cure for endometriosis, excision surgery where all lesions are removed is recommended. The skill and knowledge of the surgeon is paramount in the ability to recognize and remove all lesions. Hormonal medication might help temporarily with symptom management, but it cannot be used to diagnosis, cure (“clean up”), or prevent the progression of endometriosis. Endometriosis can persist after a hysterectomy or menopause. Endometriosis is often present with other painful conditions such as adenomyosis and interstitial cystitis.

For more information see: nancysnookendo.com

Reaching Out To Teach Another: nancysnookendo.com/support-us/

4 years ago Endometriosis , Endometriosis Education

Chronic Pelvic Pain: More Than Endometriosis Alone

If you have chronic pelvic pain, endometriosis is likely- endometriosis is diagnosed in up to 80% of patients with chronic pelvic pain (Butrick, 2007). Endometriosis is bad enough, but it is frequently accompanied by other conditions that can cause chronic pelvic pain and other symptoms similar to endometriosis. For instance:

• Adenomyosis: Adenomyosis and endometriosis have been found together anywhere from 21.8% to 79% of the time (Antero et al., 2017; Di Donato et al., 2014; Kunz et al., 2005).
• Interstitial cystitis (IC): The so-called “evil twin” of endometriosis occurs in anywhere between 33-65% of people with endometriosis (Butrick, 2007; Chung et al., 2005). One article stated that “if [endometriosis] symptoms recur within the first 12 months after surgical therapy, IC should be considered as a possible cause” or “when therapy for the symptoms of endometriosis is unsuccessful, increasing evidence suggests that IC may be an underlying cause” (Butrick, 2007).
• Endometrial/uterine polyps: Uterine polyps have been found in 48% of people with endometriosis (Zhang et al., 2018; Zheng et al., 2015). And if you have uterine polyps, you are also more likely to have adenomyosis as well (Indraccolo & Barbieri, 2011).
• Fibroids (Leiomyomas): Both endometriosis and fibroids have been found together in 12-26% of patients, although one small study found both in 86% of the patients studied (Huang et al., 2010; Nezhat et al., 2016; Uimara et al., 2011).

These can also lead to other problems such as pelvic floor dysfunction. Other conditions not necessarily associated with endometriosis can also cause chronic pelvic pain. These might include pelvic congestion syndrome, pudendal neuralgia, or occult hernias. This is why it is so important to identify other pain/symptom generators and treat those as well. If it all gets blamed on endometriosis, you may miss a key to finding relief.

References

Antero, M. F., O’Sullivan, D., Mandavilli, S., & Mullins, J. (2017). High prevalence of endometriosis in patients with histologically proven adenomyosis. Fertility and Sterility, 107(3), e46. Retrieved from https://doi.org/10.1016/j.fertnstert.2017.02.088

Butrick, C. W. (2007). Patients with chronic pelvic pain: endometriosis or interstitial cystitis/painful bladder syndrome?. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 11(2), 182. Retrieved from https://europepmc.org/article/med/17761077

Chung, M. K., Chung, R. P., & Gordon, D. (2005). Interstitial cystitis and endometriosis in patients with chronic pelvic pain: the “evil twins” syndrome. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 9(1), 25. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3015562/

Di Donato, N., Montanari, G., Benfenati, A., Leonardi, D., Bertoldo, V., Monti, G., … & Seracchioli, R. (2014). Prevalence of adenomyosis in women undergoing surgery for endometriosis. European Journal of Obstetrics & Gynecology and Reproductive Biology, 181, 289-293. Retrieved from https://doi.org/10.1016/j.ejogrb.2014.08.016

Huang, J. Q., Lathi, R. B., Lemyre, M., Rodriguez, H. E., Nezhat, C. H., & Nezhat, C. (2010). Coexistence of endometriosis in women with symptomatic leiomyomas. Fertility and sterility, 94(2), 720-723. Retrieved from https://www.fertstert.org/article/S0015-0282(09)00620-7/pdf

Indraccolo, U., & Barbieri, F. (2011). Relationship between adenomyosis and uterine polyps. European Journal of Obstetrics & Gynecology and Reproductive Biology, 157(2), 185-189. Retrieved from https://pubmed.ncbi.nlm.nih.gov/21470766/

Kunz, G., Beil, D., Huppert, P., Noe, M., Kissler, S., & Leyendecker, G. (2005). Adenomyosis in endometriosis—prevalence and impact on fertility. Evidence from magnetic resonance imaging. Human reproduction, 20(8), 2309-2316. Retrieved from https://doi.org/10.1093/humrep/dei021

Nezhat, C., Li, A., Abed, S., Balassiano, E., Soliemannjad, R., Nezhat, A., … & Nezhat, F. (2016). Strong association between endometriosis and symptomatic leiomyomas. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 20(3). doi: 10.4293/JSLS.2016.00053

Uimari, O., Järvelä, I., & Ryynänen, M. (2011). Do symptomatic endometriosis and uterine fibroids appear together?. Journal of human reproductive sciences, 4(1), 34. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136067/

Zhang, Y. N., Zhang, Y. S., Yu, Q., Guo, Z. Z., Ma, J. L., & Yan, L. (2018). Higher prevalence of endometrial polyps in infertile patients with endometriosis. Gynecologic and obstetric investigation, 83(6), 558-563. DOI:10.1159/000487946

Zheng, Q. M., Mao, H. L., Zhao, Y. J., Zhao, J., Wei, X., & Liu, P. S. (2015). Risk of endometrial polyps in women with endometriosis: a meta-analysis. Reproductive Biology and Endocrinology, 13(1), 1-9. Retrieved from https://doi.org/10.1186/s12958-015-0092-2

4 years ago Endometriosis , Endometriosis Education

Thyroid disease and endometriosis

There are not many studies looking into the association of endometriosis and thyroid diseases. One study found that Graves disease (hyperthyroidism) was associated with endometriosis, but hypothyroidism was not (Yuk et al., 2016). Another study did not show any increase in prevalence in thyroid disorders among people with endometriosis (it was, in fact, less than the control group) (Petta et al., 2007).  However, in another study that was looking into infertility, the researchers found that there was a higher prevalence of positive thyroid antibodies in those with endometriosis (Poppe et al., 2002). There are not enough high-quality studies to give strong evidence to a direct correlation between thyroid disorders and endometriosis. The incidence of endometriosis is estimated to be about 1 in 10 women, while the incidence of thyroid disorder is about 1 in 8 women (American Thyroid Association, n.d.).  Thus, there may be significant overlap of the two.

However, endometriosis lesions may respond differently to circulating thyroid hormones. Just as endometriosis lesions have altered estrogen and progesterone receptors (see Role of Estrogen and Progesterone Resistance), endometriosis lesions may have altered thyroid metabolism (Petneau et al., 2019). This altered metabolism can lead to resistance to triiodothyronine (T3) action and local accumulation of thyroxine (T4), which could lead to proliferation of the endometriosis tissue (Peyeau et al., 2019). The study also mentions that  “in humans, thyroid disorders are associated with more severe forms of endometriosis” as well as “increased chronic pelvic pain and disease score” (Peyneau et al., 2019). This study further demonstrates that endometriosis tissue has its own unique form and functionality.

References

American Thyroid Association. (n.d.). General Information/Press Room. Retrieved from https://www.thyroid.org/media-main/press-room/

Petta, C. A., Arruda, M. S., Zantut-Wittmann, D. E., & Benetti-Pinto, C. L. (2007). Thyroid autoimmunity and thyroid dysfunction in women with endometriosis. Human reproduction, 22(10), 2693-2697. Retrieved from https://doi.org/10.1093/humrep/dem267

Peyneau, M., Kavian, N., Chouzenoux, S., Nicco, C., Jeljeli, M., Toullec, L., … & Batteux, F. (2019). Role of thyroid dysimmunity and thyroid hormones in endometriosis. Proceedings of the National Academy of Sciences, 116(24), 11894-11899. Retrieved from https://www.pnas.org/content/116/24/11894.short

Poppe, K., Glinoer, D., Van Steirteghem, A., Tournaye, H., Devroey, P., Schiettecatte, J., & Velkeniers, B. (2002). Thyroid dysfunction and autoimmunity in infertile women. Thyroid, 12(11), 997-1001. Retrieved from https://doi.org/10.1089/105072502320908330

Shigesi, N., Kvaskoff, M., Kirtley, S., Feng, Q., Fang, H., Knight, J. C., … & Becker, C. M. (2019). The association between endometriosis and autoimmune diseases: a systematic review and meta-analysis. Human reproduction update, 25(4), 486-503. Retrieved from https://doi.org/10.1093/humupd/dmz014

Yuk, J. S., Park, E. J., Seo, Y. S., Kim, H. J., Kwon, S. Y., & Park, W. I. (2016). Graves disease is associated with endometriosis: a 3-year population-based cross-sectional study. Medicine, 95(10). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998884/

4 years ago Endometriosis , Endometriosis Education

Is there an endometriosis Diet?

There is no one specific diet for endometriosis. No food, diet, or supplement will “cure” endometriosis, but it can help manage symptoms and is great for overall health and well-being. Your diet needs to be individualized to your specific needs, and it can take quite a bit of experimentation to find what works for you.

Some studies have found that a few things seem to help manage symptoms of endometriosis. Most of the strategies help to eliminate any food intolerances and influence inflammation and estrogen (Thomas & Natarajan, 2013). Some of the dietary strategies might include:

• Gluten free diet (Marziali et al., 2012)
• Low FODMAP diet (Moore et al., 2017)
• Anti-inflammatory diet (Leonardi et al., 2020)
• Fruits, vegetables (“preferably organic”), and whole grains (Ghonemy & El Sharkawy, 2017; Harris et al., 2018)
• Antioxidants, such as vitamins A, C, D, and E as well as B vitamins (Darling et al., 2013; Ghonemy & El Sharkawy, 2017; Huijs & Nap, 2020; Thomas & Natarajan, 2013) [Caveat- one study stated that vitamins from vitamin rich food and not supplements were noted with the difference (Darling et al., 2013)]
• Anti-inflammatories such as green tea, resveratrol, fish oil, healthy fatty acids (omega-3), N-acetylcysteine, quercitin, curcumin, parthenium, nicotinamide, 5‐methyltetrahydrofolate (Ghonemy & El Sharkawy, 2017; Huijs & Nap, 2020; Leonardi et al., 2020; Signorile, Viceconte, & Baldi, 2018)
• High fiber diet (Thomas & Natarajan, 2013)
• Rule out food intolerances and individualize your diet (Karlsson, Patel, & Premberg, 2020; Kronemyer, 2019; Leonardi et al., 2020)
• “Balanced diet with adequate vitamins and minerals, reduction of alcohol, sugar, and caffeine intake, exclusion of fructose or lactose intolerance” (Halis, Mechsner, & Ebert, 2010)
• The consumption of soy is controversial in endometriosis; however, Huijs & Nap (2020) note that “the amount of phytoestrogens present in soy is relatively low, making the effect of avoiding soy on suppressing endometriosis-related symptoms questionable”. They conclude that “there is insufficient evidence to advise women with endometriosis to avoid soy” (Huijs & Nap, 2020).

Karlsson, Patel, and Premberg (2020) summed it up best by stating that “participants experienced decreased symptoms and increased well-being after adopting an individually-adapted diet”; therefore, it may take some experimenting to find what works best for you as an individual.

*Interstitial cystitis is often called the “evil twin” of endometriosis and its symptoms can be greatly influenced by diet (see Interstitial Cystitis).

more topics:

Curcumin’s effect on endometriosis

Endometriosis Diet and Nutrition

Social gatherings and food choices

Links:

• “Endo Diet” from the Nutritionista
• Podcast on “Outsmart Endometriosis: The Elimination ‘Undiet’ for Endometriosis with Dr Jessica Drummond”

References

Darling, A. M., Chavarro, J. E., Malspeis, S., Harris, H. R., & Missmer, S. A. (2013). A prospective cohort study of Vitamins B, C, E, and multivitamin intake and endometriosis. Journal of Endometriosis and Pelvic Pain Disorders, 5(1), 17-26. Retrieved from https://journals.sagepub.com/doi/abs/10.5301/je.5000151

Ghonemy, G. E., & El Sharkawy, N. B. (2017). Impact of changing lifestyle on endometriosis related pain. IOSR Journal of Nursing and Health Science, 6(2), 120-129. DOI: 10.9790/1959-060205120129

Halis, G., Mechsner, S., & Ebert, A. D. (2010). The diagnosis and treatment of deep infiltrating endometriosis. Deutsches Ärzteblatt International, 107(25), 446. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2905889/

Harris, H. R., Eke, A. C., Chavarro, J. E., & Missmer, S. A. (2018). Fruit and vegetable consumption and risk of endometriosis. Human Reproduction, 33(4), 715-727.  Retrieved from https://doi.org/10.1093/humrep/dey014

Huijs, E., & Nap, A. W. (2020). The effects of nutrients on symptoms in women with endometriosis: a systematic review. Reproductive BioMedicine Online. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S147264832030225X

Leonardi, M., Horne, A. W., Vincent, K., Sinclair, J., Sherman, K. A., Ciccia, D., … & Armour, M. (2020). Self-management strategies to consider to combat endometriosis symptoms during the COVID-19 pandemic. Human Reproduction Open, 2020(2), hoaa028. Retrieved from https://academic.oup.com/hropen/article/2020/2/hoaa028/5849477?login=true

Karlsson, J. V., Patel, H., & Premberg, A. (2020). Experiences of health after dietary changes in endometriosis: a qualitative interview study. BMJ open, 10(2), e032321. https://bmjopen.bmj.com/content/10/2/e032321.abstract

Kronemyer, B. (2019). Nutrient intake and gastrointestinal comorbidities with endometriosis. Contemporary OB/GYN, 64(10), 26-26. Retrieved from https://search.proquest.com/openview/1b532d099eb09103200be8ee1bae4f3c/1?pq-origsite=gscholar&cbl=48920

Marziali, M., Venza, M., Lazzaro, S., Lazzaro, A., Micossi, C., & Stolfi, V. M. (2012). Gluten-free diet: a new strategy for management of painful endometriosis related symptoms?. Minerva chirurgica, 67(6), 499-504. Retrieved from https://europepmc.org/article/med/23334113

Moore, J. S., Gibson, P. R., Perry, R. E., & Burgell, R. E. (2017). Endometriosis in patients with irritable bowel syndrome: specific symptomatic and demographic profile, and response to the low FODMAP diet. Australian and New Zealand Journal of Obstetrics and Gynaecology, 57(2), 201-205. Retrieved from https://obgyn.onlinelibrary.wiley.com/doi/abs/10.1111/ajo.12594 

Signorile, P. G., Viceconte, R., & Baldi, A. (2018). Novel dietary supplement association reduces symptoms in endometriosis patients. Journal of cellular physiology, 233(8), 5920-5925. Retrieved from https://onlinelibrary.wiley.com/doi/abs/10.1002/jcp.26401

Thomas, D. S., & Natarajan, J. R. (2013). Diet–A New Approach To Treating Endometriosis–What Is The Evidence?. IOSR Journal of Nursing and Health Science, 1(5), 4-11. Retrieved from https://www.researchgate.net/publication/282006175_Diet-A_new_approach_to_treating_endometriosis-_What_is_the_evidence

4 years ago Endometriosis , Endometriosis Education

Medication to Prevent Recurrence?

“Should I take medication to prevent recurrence of my endo?” There is no definitive answer to this question- it is an individual choice that should be discussed with your provider. However, evidence points to it not being needed if ALL endometriosis is removed with surgery. A few things to consider:

Is it truly a “recurrence” or just missed disease?

A significant factor to consider is if all endometriotic lesions were removed in the first place:

• “…findings all support that residual lesions seems to be the primary reason for the recurrence of the disease” (Selçuk & Bozdağ, 2013).  
• “Lack of complete surgical excision was another independent risk factor for recurrence of disease” (Ianieri, Mautone, & Ceccaroni, 2018).
• Deep infiltrating disease has a much lower recurrence rate with complete excision versus incomplete (3.9% versus 35.3%!) (Cao et al., 2015).
• “The experience of the surgeon is also a factor that implies the risk of recurrence” (Selçuk & Bozdağ, 2013).
• Interestingly, prior medical treatment before excision can increase the risk for recurrence (Koga et al., 2013).

Does it involve a type of endometriosis that has higher recurrence risk, such as ovarian, peritoneal, or deep infiltrating disease (stage 3 or 4)? Are you at a young age (under 21 years)?

• There is a higher recurrence risk with ovarian, peritoneal, or deep infiltrating disease (stage 3 or 4) (Selçuk & Bozdağ, 2013). Ovarian endometriomas have a recurrence rate of 11-32% (higher risk in younger patients and those with advanced disease) (Koga et al., 2013).
• Those at a younger age (under 21 years) have a higher recurrence rate (Tandoi et al., 2011).
• However, these factors depend again on the ability to remove the disease. The skill of the surgeon and having an interdisciplinary team can increase the odds of removing more advanced disease and decrease the risk of recurrence- this holds true even for younger patients (Fischer et al., 2013; Yeung et al., 2011). (See Why Excision)

Are there other conditions that can be causing continued symptoms that are similar to endometriosis symptoms (adenomyosis, interstitial cystitis, etc.)?

• Most of us with endometriosis have more than one condition that can mimic the symptoms of endometriosis. These conditions need their own specific treatment.  (See Related Conditions)

Remember, medications overall are “suppressive rather than curative” (Falcone & Flyckt, 2018). In addition, hormonal medication may not stop the progression of disease- this is particularly important where the ureters and/or bowel are involved (Barra et al., 2018; Ferrero et al., 2011; Millochau et al., 2016).

There are many studies and arguments for both sides. Here are a few:

Against it:

• “There is currently no evidence to support any treatment being recommended to prevent the recurrence of endometriosis following conservative surgery.” (Sanghera et al., 2016)
• “Many studies have investigated factors determining the recurrence of endometrioma and pain after surgery [16, 19, 20]…. Regardless of the mechanism, the present and previous studies suggest that postoperative medical treatment is known to delay but not completely prevent recurrence…. In our study, we also failed to observe a benefit for postoperative medication in preventing endometrioma and/or endometriosis-related pain recurrence.” (Li et al., 2019)
• “Complete laparoscopic excision of endometriosis in teenagers–including areas of typical and atypical endometriosis–has the potential to eradicate disease. These results do not depend on postoperative hormonal suppression.” (Yeung et al., 2011)
• “A systematic review found that post-surgical hormonal treatment of endometriosis compared with surgery alone has no benefit for the outcomes of pain or pregnancy rates…it found that there is insufficient evidence to conclude that hormonal suppression in association with surgery for endometriosis is associated with a significant benefit with regard to any of the outcomes identified….Moreover, even if post-operation medication proves to be effective in reducing recurrence risk, it is questionable that ‘all’ patients would require such medication in order to reduce the risk of recurrence. It has been reported that about 9% of women with endometriosis simply do not respond to progestin treatment….Therefore, the use of post-operation medication indiscriminately may cause unnecessary side effects (and an increase in health care costs) in some patients who may intrinsically have a much lower risk than others and in others who may be simply resistant to the therapy. The identification of high-risk patients who may benefit the most from drug intervention would remain a challenge.” (Guo, 2009)
• “GnRHa administration is followed by a temporary improvement of pain in patients with incomplete surgical treatment. It seems that it has no role on post-surgical pain when the surgeon is able to completely excise DIE implants.” (Angioni et al., 2015)

For it:

• “Post-operative hormonal suppression following conservative endometriosis surgery decreases the odds of disease recurrence and results in greater reductions in pelvic pain/dysmenorrhea compared to expectant management.” (Zakhari et al., 2019)
• “Laparoscopic excision is considered as the ‘gold standard’ treatment of ovarian endometrioma. However, a frustrating aspect is that disease can recur….Regarding post-operative medical management for preventing recurrence, GnRH analogue and danazol have not been proved to be effective mainly because most trials used these drugs over short periods. In contrast, long term administration of OC is safe and tolerable and recommended for those who do not want to conceive immediately after the surgery.” (Koga et al., 2013)

References

Angioni, S., Pontis, A., Dessole, M., Surico, D., Nardone, C. D. C., & Melis, I. (2015). Pain control and quality of life after laparoscopic en-block resection of deep infiltrating endometriosis (DIE) vs. incomplete surgical treatment with or without GnRHa administration after surgery. Archives of gynecology and obstetrics, 291(2), 363-370.  Retrieved from https://link.springer.com/article/10.1007/s00404-014-3411-5

Barra, F., Scala, C., Biscaldi, E., Vellone, V. G., Ceccaroni, M., Terrone, C., & Ferrero, S. (2018). Ureteral endometriosis: a systematic review of epidemiology, pathogenesis, diagnosis, treatment, risk of malignant transformation and fertility. Human reproduction update, 24(6), 710-730. https://academic.oup.com/humupd/article/24/6/710/5085039?login=true

Cao, Q., Lu, F., Feng, W. W., Ding, J. X., & Hua, K. Q. (2015). Comparison of complete and incomplete excision of deep infiltrating endometriosis. International journal of clinical and experimental medicine, 8(11), 21497. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4723943/

Falcone, T., & Flyckt, R. (2018). Clinical management of endometriosis. Obstetrics & Gynecology, 131(3), 557-571. Retrieved from https://journals.lww.com/greenjournal/Abstract/2018/03000/Clinical_Management_of_Endometriosis.23.aspx?context=FeaturedArticles&collectionId=4

Ferrero, S., Camerini, G., Venturini, P. L., Biscaldi, E., & Remorgida, V. (2011). Progression of bowel endometriosis during treatment with the oral contraceptive pill. Gynecological Surgery, 8(3), 311-313. Retrieved from https://link.springer.com/article/10.1007/s10397-010-0610-3

Fischer, J., Giudice, L. C., Milad, M., Mosbrucker, C., & Sinervo, K. R. (2013). Diagnosis & management of endometriosis: pathophysiology to practice. APGO Educational Series on Women’s Health Issues. Retrieved from https://www.ed.ac.uk/files/atoms/files/diagnosis_and_management_of_endometriosis_booklet.pdf

Guo, S. W. (2009). Recurrence of endometriosis and its control. Human reproduction update, 15(4), 441-461. Retrieved from http://humupd.oxfordjournals.org/content/15/4/441.full 

Ianieri, M. M., Mautone, D., & Ceccaroni, M. (2018). Recurrence in deep infiltrating endometriosis: a systematic review of the literature. Journal of minimally invasive gynecology, 25(5), 786-793. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465018300372

Koga, K., Osuga, Y., Takemura, Y., Takamura, M., & Taketani, Y. (2013). Recurrence of endometrioma after laparoscopic excision and its prevention by medical management. Front Biosci (Elite Ed), 5, 676-683.  Retrieved from https://pdfs.semanticscholar.org/2da7/5702eac08b0a32fb31bd5478be9e5d43a8b7.pdf

Li, X. Y., Chao, X. P., Leng, J. H., Zhang, W., Zhang, J. J., Dai, Y., … & Wu, Y. S. (2019). Risk factors for postoperative recurrence of ovarian endometriosis: long-term follow-up of 358 women. Journal of Ovarian Research, 12(1), 79. Retrieved from https://ovarianresearch.biomedcentral.com/articles/10.1186/s13048-019-0552-y

Millochau, J. C., Abo, C., Darwish, B., Huet, E., Dietrich, G., & Roman, H. (2016). Continuous amenorrhea may be insufficient to stop the progression of colorectal endometriosis. Journal of minimally invasive gynecology, 23(5), 839-842. Retrieved from https://www.jmig.org/article/S1553-4650(16)30047-4/abstract?fbclid=IwAR2Q7o1kJtfNNgMd0Q4_5K0BDe9_DjH1QOUTxTLK2HpgiFVgws5NT9xVdwo

Sanghera, S., Barton, P., Bhattacharya, S., Horne, A. W., & Roberts, T. E. (2016). Pharmaceutical treatments to prevent recurrence of endometriosis following surgery: a model-based economic evaluation. BMJ open, 6(4), e010580. Retrieved from http://bmjopen.bmj.com/content/6/4/e010580.long 

Selçuk, İ., & Bozdağ, G. (2013). Recurrence of endometriosis; risk factors, mechanisms and biomarkers; review of the literature. Journal of the Turkish German Gynecological Association, 14(2), 98. Retrieved from https://journals.sagepub.com/doi/full/10.2217/whe.15.56

Tandoi, I., Somigliana, E., Riparini, J., Ronzoni, S., & Candiani, M. (2011). High rate of endometriosis recurrence in young women. Journal of pediatric and adolescent gynecology, 24(6), 376-379. Retrieved from https://doi.org/10.1016/j.jpag.2011.06.012

Yeung Jr, P., Sinervo, K., Winer, W., & Albee Jr, R. B. (2011). Complete laparoscopic excision of endometriosis in teenagers: is postoperative hormonal suppression necessary?. Fertility and sterility, 95(6), 1909-1912.  Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/21420081 

Zakhari, A., Delpero, E., McKeown, S., Murji, A., & Bougie, O. (2019). Long Term Outcomes of Post-Operative Hormonal Suppression in Patients with Endometriosis: A Systematic Review and Meta-Analysis. Journal of Minimally Invasive Gynecology, 26(7), S90.  Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465019311641

4 years ago Endometriosis , Endometriosis Education

My experience with pelvic physical therapy

I had never heard of pelvic physical therapy when my doctor suggested it. I was both wary of what pelvic physical therapy would entail and how much it might help. Pain from endometriosis, especially pain that has gone on for years, can contribute to myofascial issues (Aredo et al., 2017; dos Bispo et al., 2016). Most people with endometriosis have other conditions that can contribute to chronic pelvic pain as well. Pelvic physical therapy can be a great part of a treatment plan for chronic pelvic pain (Weiss, Rich, & Swisher, 2012). It did help me tremendously- especially after I had my endometriosis lesions excised.

There is specialized training to do pelvic physical therapy. For instance, my pelvic PT held a certification in pelvic health physical therapy (CAPP) and knew that kegels weren’t a blanket treatment for pelvic conditions in women (see “Everyone should do kegels” and other pelvic floor myths).

When I went for my initial consultation with the pelvic physical therapist, she went through my history and did both an external and internal exam. She assessed what might be contributing to my problems. She used external electromyographic biofeedback where I could see the screen and see how tight my pelvic floor muscles were (off the chart so tight).

My PT then created a plan to address my specific issues to help restore balance to my body and retrain my pelvic floor muscles to release.  She utilized biofeedback, neuromuscular electrical stimulation, yoga therapy, myofascial release techniques, manual joint mobilization and therapeutic exercises. She also adapted my plan based on my feedback. Having a knowledgeable pelvic physical therapist is so important- because everyone is different and will need a unique treatment plan.

I did 3 months of physical therapy before surgery and then 3 more months after. I noted some improvement before surgery, but it wasn’t until after my surgery to remove my endometriosis that I really noticed a big difference. It did take that amount of time to heal after surgery and continue the physical therapy work in order to get to a point that I felt I was where I wanted to be. It wasn’t easy, but it was worth it.

If you are considering pelvic physical therapy, then check out our Treatment page and look under Physical Therapy.

Here are some good places to start to learn more about pelvic physical therapy and how it might help you:

• Preparing for Pelvic Floor Therapy
• Pelvic Floor Spasm: The missing link in chronic pelvic pain
• Recognition and Management of Nonrelaxing Pelvic Floor Dysfunction
• 10 Expert Physio Techniques that Relieve Pelvic Floor Muscle Tension and Pelvic Pain Fast
• Video: Endometriosis, Your Pelvic Floor, and You
• Video: Painful Sex and the Endo Pelvis

References

• Aredo, J. V., Heyrana, K. J., Karp, B. I., Shah, J. P., & Stratton, P. (2017, January). Relating chronic pelvic pain and endometriosis to signs of sensitization and myofascial pain and dysfunction. In Seminars in reproductive medicine (Vol. 35, No. 1, p. 88). NIH Public Access. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5585080/
• dos Bispo, A. P. S., Ploger, C., Loureiro, A. F., Sato, H., Kolpeman, A., Girão, M. J. B. C., & Schor, E. (2016). Assessment of pelvic floor muscles in women with deep endometriosis. Archives of gynecology and obstetrics, 294(3), 519-523. Retrieved from https://link.springer.com/article/10.1007/s00404-016-4025-x
• Weiss, P. M., Rich, J., & Swisher, E. (2012). Pelvic floor spasm: the missing link in chronic pelvic pain. Contemporary OB/GYN. Retrieved from dos Bispo, A. P. S., Ploger, C., Loureiro, A. F., Sato, H., Kolpeman, A., Girão, M. J. B. C., & Schor, E. (2016). Assessment of pelvic floor muscles in women with deep endometriosis. Archives of gynecology and obstetrics, 294(3), 519-523. Retrieved from https://link.springer.com/article/10.1007/s00404-016-4025-x

4 years ago Endometriosis , Endometriosis Education No comment

Fatigue with Endometriosis

Fatigue is a symptom of endometriosis and can be quite debilitating (Ramin-Wright et al., 2018). Taber’s Medical Dictionary (n.d.) defines fatigue as “an overwhelming sustained feeling of exhaustion and diminished capacity for physical and mental work.” Fatigue with an illness often does not improve with rest (Louati & Berenbaum, 2015).

Endometriosis is an inflammatory disorder, and this inflammation can lead to fatigue. Inflammatory molecules, such as prostaglandins, cytokines, etc., contribute to fatigue as well as problems with “sleep, cognition, anxiety, and depression” (Poon et al., 2015; Zielinski, Systrom, & Rose, 2019). Chronic low-grade inflammation can cause a reduction in energy on the cellular level (Lacourt et al., 2018). In a circular pattern, inflammation can lead to pain, sleep problems, stress, and depression….which can lead to more inflammation. In addition, hormones, “mainly estradiol,” can “promote the expression and release of pro-inflammatory factors” (García-Gómez et al., 2020). Endometriosis lesions have shown higher amounts of estrogen receptors as well as progesterone resistance- making them susceptible to inflammatory promotion from estrogen (see Role of Estrogen Receptor in Endometriosis).

Pain can lead to sleep problems, and sleep disorders can also cause more inflammation, leading to more pain and fatigue (Lacourt et al., 2018; Zielinski, Systrom, & Rose, 2019). On a good note: “melatonin therapy has been shown to attenuate inflammatory cytokines…thus could potentially be beneficial in combating fatigue” (Zielinski, Systrom, & Rose, 2019). Stress, even good stress, can take a toll on your body and mind. Chronic stress can lead to more inflammation which can contribute to feelings of fatigue (Zielinski, Systrom, & Rose, 2019). Inflammation can affect neurotransmitters which can affect both fatigue and mood (Zielinski, Systrom, & Rose, 2019).  Lee & Giuliani (2019) report that “depression and fatigue are associated with an increased activation of the immune system which may serve as a valid target for treatment.” They also note that “antidepressants have been shown to decrease inflammation” (Lee & Giuliani, 2019).

So we see that many things can contribute to fatigue. Fatigue is difficult to treat, especially if the underlying cause is not addressed. Ramin-Wright et al. (2018) states that “as fatigue is experienced by numerous women with endometriosis, it needs to be addressed in the discussion of management and treatment of the disease. In addition to treating endometriosis, it would be beneficial to reduce insomnia, depression, pain and occupational stress in order to better manage fatigue.” It is also important to remember that fatigue is a symptom of many disorders, so do not automatically assume that endometriosis is the only cause of your fatigue- it’s important to rule out other causes too.

Resources:

• “Endometriosis Fatigue Management”
• “This Is What Chronic Fatigue Feels Like”
• “Fatigue is a constant state of being tired—not sleepy, but physically exhausted.”

References

Lee, C. H., & Giuliani, F. (2019). The role of inflammation in depression and fatigue. Frontiers in immunology, 10, 1696. Retrieved from https://doi.org/10.3389/fimmu.2019.01696

García-Gómez, E., Vázquez-Martínez, E. R., Reyes-Mayoral, C., Cruz-Orozco, O. P., Camacho-Arroyo, I., & Cerbón, M. (2020). Regulation of inflammation pathways and inflammasome by sex steroid hormones in endometriosis. Frontiers in endocrinology, 10, 935. Retrieved from https://doi.org/10.3389/fendo.2019.00935

Lacourt, T. E., Vichaya, E. G., Chiu, G. S., Dantzer, R., & Heijnen, C. J. (2018). The high costs of low-grade inflammation: persistent fatigue as a consequence of reduced cellular-energy availability and non-adaptive energy expenditure. Frontiers in behavioral neuroscience, 12, 78. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5932180/#:~:text=We%20propose%20that%20chronic%20low,rapid%20generation%20of%20cellular%20energy.

Louati, K., & Berenbaum, F. (2015). Fatigue in chronic inflammation-a link to pain pathways. Arthritis research & therapy, 17(1), 1-10. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4593220/

Poon, D. C. H., Ho, Y. S., Chiu, K., Wong, H. L., & Chang, R. C. C. (2015). Sickness: From the focus on cytokines, prostaglandins, and complement factors to the perspectives of neurons. Neuroscience & biobehavioral reviews, 57, 30-45. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0149763415002006

Ramin-Wright, A., Schwartz, A. S. K., Geraedts, K., Rauchfuss, M., Wölfler, M. M., Haeberlin, F., … & Leeners, B. (2018). Fatigue–a symptom in endometriosis. Human reproduction, 33(8), 1459-1465. Retrieved from https://academic.oup.com/humrep/article/33/8/1459/5040620?login=true

Taber’s Medical Dictionary. (n.d.). Fatigue. Retrieved from https://www.tabers.com/tabersonline/view/Tabers-Dictionary/757231/all/fatigue

Zielinski, M. R., Systrom, D. M., & Rose, N. R. (2019). Fatigue, sleep, and autoimmune and related disorders. Frontiers in immunology, 10, 1827. Retrieved from https://doi.org/10.3389/fimmu.2019.01827

4 years ago Endometriosis , Endometriosis Education

Ehlers Danlos and endometriosis

• Ehlers Danlos syndrome (EDS) is a connective tissue disorder that can affect skin, joints, and many tissues in the body by its effect on collagen (National Organization for Rare Diseases, 2017).

• There are not many available studies on any association between endometriosis and Ehlers Danlos. Heavy menstrual bleeding, irregular menstruation, and severe pain during menstruation are symptoms of Ehlers Danlos (Castori, 2012). One study noted that, while those with Ehlers Danlos experience many common symptoms of endometriosis such as painful periods and painful penetration, “endometriosis was not highly prevalent in this population” (Hugon-Rodin et al., 2016). Another study also notes that “only occasionally” are those symptoms “related to an underlying gynecologic disorder, such as endometriosis” (Castori, 2012). In a presentation to the Ehlers Danlos Society in 2018, Dr. Blagowidow cites 6-23% of those with EDS also have endometriosis.

• The incidence of Ehlers-Danlos syndrome is between 1 in 2500 and 1 in 5000 (Miklovic & Sieg, 2019). The incidence of endometriosis is 1 in 10 (Parasar, Ozcan, & Terry, 2017). There may be overlap in the conditions, but nothing definitive has been discovered associating it and endometriosis, aside from common symptoms.

• There are not many resources for treating the pelvic pain associated with Ehlers Danlos syndrome. NSAIDS, vitamin B1, magnesium, acupuncture, oral contraceptive pills, progesterone (pills or intrauterine device), and physical therapy are recommendations from Dr. Natalie Blagowidow (2018) to the Ehlers Danlos Society. You can read more about treatment options for endometriosis here.

References

Blagowidow, N. (2018). OB/GYN and EDS/HDS. Retrieved from https://www.ehlers-danlos.com/pdf/2018-annual-conference/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf

Castori, M. (2012). Ehlers-danlos syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations. International Scholarly Research Notices, 2012.  Retrieved from https://www.hindawi.com/journals/isrn/2012/751768/

Hugon-Rodin, J., Lebègue, G., Becourt, S., Hamonet, C., & Gompel, A. (2016). Gynecologic symptoms and the influence on reproductive life in 386 women with hypermobility type Ehlers-Danlos syndrome: a cohort study. Orphanet Journal of Rare Diseases, 11(1), 1-6. Retrieved from https://ojrd.biomedcentral.com/articles/10.1186/s13023-016-0511-2

Miklovic, T., & Sieg, V. C. (2019). Ehlers Danlos Syndrome. Retrieved from  https://www.ncbi.nlm.nih.gov/books/NBK549814/

National Organization for Rare Diseases. (2017). Ehlers Danlos Syndromes. Retrieved from https://rarediseases.org/rare-diseases/ehlers-danlos-syndrome/#symptoms

Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: epidemiology, diagnosis and clinical management. Current obstetrics and gynecology reports, 6(1), 34-41. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5737931/#:~:text=Endometriosis%20affects%2010%E2%80%9315%25%20of,and%20reduced%20quality%20of%20life.

4 years ago Endometriosis , Endometriosis Education

Table of Contents

Here is an updated Table of Contents:

WHAT IS ENDOMETRIOSIS

1. Endometriosis Overview
2. Staging, “Minimal” Disease, and DIE
3. ORIGIN THEORIES OF ENDOMETRIOSIS
   1. Origin Theories of Endometriosis
   2. More Evidence Against Reflux Theory of Origin
4. APPEARANCES OF ENDOMETRIOSIS
   1. The Many Appearances of Endo
   2. Histology of Endometriosis
5. LOCATIONS OF ENDOMETRIOSIS
   1. Locations of endometriosis
   2. Weird places endometriosis has been found
6. BEHAVIOR OF ENDOMETRIOSIS
   1. Role of Estrogen Receptor-β in Endometriosis
   2. Progesterone Resistance in Endometriosis
   3. Leptin and its role in endometriosis
7. MORE IN DEPTH ON ENDO
   1. Risks of Heart Disease, Perspective on Research

SYMPTOMS

1. Symptoms
2. Symptoms Based on Endometriosis Locations
3. PAIN
   1. Introduction: Pain
   2. What influences pain levels?
   3. Pain Associated with Minimal Endometriosis
   4. Location of lesions and where pain is felt
   5. Pelvic Floor Dysfunction links
   6. Pain with Penetration
   7. Brokengirl: The secret shame of chronic pelvic pain and the unseen consequences of our current care paradigm for endometriosis care
   8. Sciatic Pain and Endometriosis
   9. Nerves and endometriosis
4. SEXUAL FUNCTIONING
   1. Pain with Penetration
   2. Post coital bleeding
5. BOWEL GASTROINTESTINAL
   1. Bowel/GI endometriosis
6. FATIGUE AND INFLAMMATION
   1. Inflammation with endometriosis
   2. Inflammatory markers and endometriosis (CRP and CA-125)
   3. Fatigue in Endometriosis
   4. Response to a study on prostaglandins and bacterial growth in endometriosis
7. INFERTILITY
   1. Fertility Issues
   2. Infertility links
8. THORACIC (DIAPHRAGM)
   1. Thoracic Endometriosis
   2. Comments on Thoracic Endometriosis
9. OVARIES
   1. Ovaries and Endometriomas
10. URINARY (BLADDER, URETERS, AND KIDNEYS)
    1. Urinary System (Bladder, Ureters, and Kidney)
11. OTHER
    1. Endometriosis Systemic Effects
    2. Immune System
    3. Adhesion Related Information
    4. Endometriosis and Exercise

DIAGNOSIS

1. Surgery
2. Ultrasound Use with Endometriosis
3. Magnetic Resonance Imaging (MRI’s) and endometriosis
4. Labwork and Blood Tests
5. But your tests are all negative?
6. Clinical diagnosis of endometriosis: a call to action- from AJOG

TREATMENT

1. How is endometriosis treated?
2. The Standard of Care is Not Sufficient!
3. The Triad of Successful Endometriosis Treatment
4. SURGERY
   1. Why Surgery
   2. Why excision is recommended
   3. Endometriosis Appearance and Location: Impact on Surgical Success
   4. The Cost Effectiveness of Surgical Excision of Endometriosis: an unpublished study
   5. Should laser vaporization and electrocoagulation of endometriosis be banned
   6. Robotic Surgery
   7. Adhesion prevention
   8. Pelvic Adhesions
   9. What to Expect in the Weeks After Skilled Excision Surgery
   10. Managing expectations pre-op and post op
   11. Bowel Endometriosis Surgical Treatment
5. MEDICATIONS
   1. Pain Medications
   2. Hormonal Medications
   3. A Quick Guide to Pain Control
   4. Medication to Prevent Recurrence
   5. Effects of long term low estrogen states
6. PHYSICAL THERAPY
   1. “Everyone should do Kegels” and other pelvic floor myths
   2. Physical Therapy Resources
   3. Pelvic Physical Therapy
7. OTHER THERAPIES
   1. Pain Management
   2. Mental Health
   3. Alternative and Complementary Therapies
   4. Diet and Nutrition

RELATED CONDITIONS

1. Adenomyosis
2. Endometrial/Uterine Polyps
3. Interstitial Cystitis/Bladder Pain Syndrome
4. Pelvic Floor Dysfunction
5. Fibroids (Leiomyomas)
6. Polycystic Ovarian Syndrome (PCOS)
7. Pudendal Neuralgia and Vulvodynia
8. Pelvic Congestion Syndrome
9. Occult Hernia
10. Migraines and Endometriosis

RESOURCES

1. Choosing your surgeon
2. Managing the relationship with your current doctor
3. Personal Medical History Template
4. Things to pack for the Hospital
5. Why Patients Have a Role to Play in Changing the Status Quo of Endometriosis
6. Endometriosis: The Patient Perspective (an AAGL presentation)
7. Giving Women Control of their Healthcare: from the APPG
8. UK Resources
9. Australia Resources
10. PREPARING FOR SURGERY- PRE AND POST OPERATIVE
    1. Before Surgery
    2. After Surgery: What to Expect
11. LINKS, VIDEOS, AND PODCASTS
    1. Articles and Website Links
    2. Podcasts and Videos
12. INSURANCE AND FINANCES
    1. Tips for Dealing with Insurance
    2. Insurance: Tricare
    3. Lack of Surgery Reimbursement in the US
    4. Endometriosis affects absenteeism and presenteeism
13. INFERTILITY
    1. Infertility links
14. TEENS
    1. Teens and Endometriosis
15. PREGNANCY
    1. Pregnancy and Endometriosis
16. LGBTQIA
    1. LGBTQIA+ Resources
    2. Transgender and Endometriosis Studies

FREQUENTLY ASKED QUESTIONS

1. Is there a link between heart disease and endometriosis?
2. What effects can long term low estrogen cause?
3. Can endometriosis persist after hysterectomy/ovary removal
4. Is There Microscopic or Occult Endometriosis
5. Is endometriosis an autoimmune disease?
6. Does endometriosis increase my risk of cancer?
7. Myths and Misinformation

PATIENT STORIES

1. Barriers to Care
2. Endometriosis: A Husband’s Perspective
3. Endometriosis is so much worse than a bad period
4. Study on the “Impact of endometriosis on women’s lives”
5. Parenting is Hard, Even Harder with Endometriosis
6. Coping with Endometriosis

4 years ago Endometriosis , Endometriosis Education

Endometriosis Getting on Your Nerves?

It really is! “Endometriosis lesions are known to be hyperinnervated” (Liu, Yan, & Guo, 2019). People with endometriosis have abnormal nerve growth and nerve fibers close to endometriosis lesions (Zheng, Zhang, Leng, & Lang, 2019). Pain with endometriosis is multifactorial, including irritation of nerves in the pelvis, new nerve growth, heightened sensitivity to pain, inflammation in the pelvis, and pain producing agents in the pelvic fluid (Ferrero, Vellone, & Barra, 2019).  The interplay between nerves and inflammation is believed to play a significant role in pain. There are increased levels of multiple inflammatory factors in and around endometriosis lesions (Wei et al., 2020). Endometriosis “can also directly irritate and infiltrate pelvic nerves promoting endometriosis-associated pain” (Ferrero, Vellone, & Barra, 2019) and can lead “to corresponding neurological symptoms or deficits” (Working group of ESGE et al., 2020). Of all the nerve!!

Read more below:

Studies:

• Liu, X., Yan, D., & Guo, S. W. (2019). Sensory nerve-derived neuropeptides accelerate the development and fibrogenesis of endometriosis. Human Reproduction, 34(3), 452-468. Retrieved from https://academic.oup.com/humrep/article-abstract/34/3/452/5303712

“Endometriotic lesions are known to be hyperinnervated due to neurogenesis resulting from neutrophins secreted by endometriotic lesions and possibly platelets. These neutrophins seem to preferentially favour production of sensory neurons at the expense of sympathetic neurons….Since sensory nerves are known to be important in wound healing and fibrogenesis, our findings also give more credence to the notion that endometriotic lesions are wounds undergoing repeated tissue injury and repair.”

• Wei, Y., Liang, Y., Lin, H., Dai, Y., & Yao, S. (2020). Autonomic nervous system and inflammation interaction in endometriosis-associated pain. Journal of Neuroinflammation, 17(1), 1-24. Retrieved from https://link.springer.com/article/10.1186/s12974-020-01752-1

“…endometriosis is certainly a chronic inflammation disorder [4]. The levels and concentrations of active macrophages; interleukin (IL)-1β, IL-6, IL-8; nerve growth factor (NGF); other immune cells; and inflammatory factors are increased in peritoneal fluid (PF) and endometriotic lesions [4,5,6]. These changes are believed to contribute to serious symptoms of pain such as chronic pelvic pain, dysmenorrhea, and dyspareunia [7]. Notably in deep infiltrating endometriosis (DIE) and intestinal endometriosis, the anatomical distribution of lesions is normally more closely related to pelvic pain symptoms [2]. Abnormal innervations are observed in most endometriotic lesions: an increased number of total intact nerve fibers, increased sensory and decreased sympathetic nerve fiber density (NFD) [6], the occurrence of cholinergic and unmyelinated nerve fibers, etc. [8] In various studies, these abnormal phenomena have been correlated with endometriosis-associated pain [6, 8,9,10]. More importantly, sympathetic and parasympathetic systems have different inflammation-related effects in different stages of inflammation [10].”

• Zheng, P., Zhang, W., Leng, J., & Lang, J. (2019). Research on central sensitization of endometriosis-associated pain: a systematic review of the literature. Journal of pain research, 12, 1447. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6514255/

“A growing body of evidence attests that patients with endometriosis endure pain associated with abnormal angiogenesis and the growth of novel nerve fibers in close proximity to ectopic lesions. Endometriotic lesions create an inflammatory environment and change the quality or quantity of inflammatory mediators or neurotransmitters, thereby stimulating peripheral nerve sensitization by remodeling the structure of peripheral synapses and accelerating conduction along nerve fibers…. Endometriosis-related pain is currently considered a form of neuropathic or neuroinflammatory pain.”

• Ferrero, S., Vellone, V. G., & Barra, F. (2019). Pathophysiology of pain in patients with peritoneal endometriosis. Annals of translational medicine, 7(Suppl 1). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462618/

“The pathophysiology of the association between pain and endometriosis is still enigmatic. The cause of pain is likely to be multifactorial (Table 1) (9,10). In patients with severe endometriosis with large ovarian cysts and DIE, pain can be caused by the distortion of the pelvic anatomy and by the presence of extensive adhesions (involving the uterus, the ovaries and the rectosigmoid) (Figure 1) (10). However, there is a poor correlation between the degree of pain and the severity of endometriosis. Some patients with intense pain symptoms have only small endometriotic implants on the peritoneal surface while other patients with severe endometriosis are almost asymptomatic….patients with endometriosis have an inflammatory process within the peritoneal cavity. In fact, women with endometriosis have increased concentration of inflammatory cells (macrophages and T lymphocytes), chemokines (MCP1, RANTES), inflammatory cytokines (IL1β, IL6, IL8, TNFα) and inflammatory molecules in the peritoneal fluid (11). These molecules and cells can sensitize peripheral nerves promoting the generation of pain (12). In addition, some pain-inducing molecules (such as prostaglandins) have elevated concentration in peritoneal fluid of women with endometriosis. Finally, endometriotic nodule can also directly irritate and infiltrate pelvic nerves promoting endometriosis-associated pain (13).”

• Working group of ESGE, ESHRE, and WES, Keckstein, J., Becker, C. M., Canis, M., Feki, A., Grimbizis, G. F., … & Tanos, V. (2020). Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Human Reproduction Open, 2020(1), hoaa002. Retrieved from https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057

“Endometriosis close to the sympathetic and parasympathetic nerve fibres (hypogastric plexus and splanchnic nerves) can lead to a dysfunction of pelvic organs (e.g. dysfunction of the bladder as well as disturbance of vaginal lubrication and intestinal dysfunction) (Possover, 2014). Involvement of somatic nerves, such as the sacral plexus and the sciatic nerve, leads to corresponding neurological symptoms or deficits.”

References

Ferrero, S., Vellone, V. G., & Barra, F. (2019). Pathophysiology of pain in patients with peritoneal endometriosis. Annals of translational medicine, 7(Suppl 1). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6462618/

Liu, X., Yan, D., & Guo, S. W. (2019). Sensory nerve-derived neuropeptides accelerate the development and fibrogenesis of endometriosis. Human Reproduction, 34(3), 452-468. Retrieved from https://academic.oup.com/humrep/article-abstract/34/3/452/5303712

Wei, Y., Liang, Y., Lin, H., Dai, Y., & Yao, S. (2020). Autonomic nervous system and inflammation interaction in endometriosis-associated pain. Journal of Neuroinflammation, 17(1), 1-24. Retrieved from https://link.springer.com/article/10.1186/s12974-020-01752-1

Working group of ESGE, ESHRE, and WES, Keckstein, J., Becker, C. M., Canis, M., Feki, A., Grimbizis, G. F., … & Tanos, V. (2020). Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Human Reproduction Open, 2020(1), hoaa002. Retrieved from https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057

Zheng, P., Zhang, W., Leng, J., & Lang, J. (2019). Research on central sensitization of endometriosis-associated pain: a systematic review of the literature. Journal of pain research, 12, 1447. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6514255/

4 years ago Endometriosis , Endometriosis Education

A Look Back on 2020- Endometriosis Research

2020 has been…different (to say the least!). Despite the pandemic, multiple research articles on endometriosis have emerged that validate the patient experience and offer glimpses into endometriosis that may help better patient care in the future.  Most research studies conclude that more research is needed. Here’s a look at just a few research articles that were published in 2020:

1. Impact from Covid-19 pandemic:

The pandemic has affected healthcare on every level and continues to today. The impact of the pandemic on endometriosis care was studied May through June of 2020 by Demetriou et al. (2020) and in their commentary, they report that “the impact on planned care was much greater: 50.0% of responders reported cancelled/postponed appointments with gynaecologists and 14.7% described cancelled/postponed primary care appointments; 37.2% had procedures cancelled/postponed (surgery: 27.0%; fertility: 12.0%). These proportions were similar around the world.”

The authors also addressed the question that many have on whether endometriosis makes them more vulnerable to Covid-19. The short answer is no. The authors state that the question might arise “because the known link to altered immunological responses has been misinterpreted as endometriosis being an autoimmune condition, with additional concerns for those with thoracic endometriosis”. Likewise, Leonardi et al. (2020) states that “there is no evidence that those with endometriosis are at increased risk of becoming infected with SARS-CoV-2 or developing COVID-19 disease…. At this time, we do not believe that the COVID-19 pandemic warrants a sustained change in the overall medical approach to the management of endometriosis (e.g., avoid surgery and favor medical management).”

Leonardi et al. (2020) has a hope that good can come from the pandemic on healthcare. They conclude that out of the pandemic, they hope that “there may be an ongoing openness to telehealth” that could “dramatically minimize the geographic barriers to care that many women experience, and facilitate the development of endometriosis networks of expertise”, that “there may be increased awareness to self-management strategies that have always existed, yet were under-utilized (e.g., mindfulness, physical exercise, and diet)”, and that a “discerning approach to surgery now and in the future, so that we ‘operate sparingly and operate well.’” (Leonardi et al., 2020)

2. Quality of Life:

In an aptly named article “The Burden of Endometriosis on Women’s Lifespan” by Della Corte et al. (2020), the authors demonstrate how endometriosis affects every aspect of a person’s life. This does not surprise those of us with endometriosis, but it does validate what we experience. Della Corte et al. (2020) assert that “endometriosis has not only physical but also psychological effects, causing depression, anxiety, and compromising social relationships. Furthermore, endometriosis negatively impacts sexual life and social relationships. At last, the economic burden of endometriosis should not be underestimated, both individually and for the community, as this pathology leads to a loss of productivity at work and large use of health resources. Thus, endometriosis-related symptoms control women’s lives compromising the quality of life in all aspects.”

• Social Impact: Those with endometriosis demonstrated “a negative impact on relationships, in particular for the lack of understanding and support from others [36]. In addition, previous studies have shown that women feel ashamed of their condition and as a result feel unable to discuss their health with their employer, colleagues, friends, and family [74]. This can lead to the fact that the women felt isolated and alone with endometriosis, as shown in a narrative review on the social and psychological impact of living with endometriosis [34]. It was also highlighted that sometimes the consideration of the effect of the disease on the quality of life is not taken into consideration even by clinicians with consequent compromise in the patient’s medical relationship. In a qualitative study, it has been reported that women highlighted negative experiences with health care clinicians, not receiving support from them….The major and most frequent negative effect of endometriosis is on intimate relationships. Dyspareunia harms sex and intimacy for couples….However, a cross-sectional qualitative study, the ENDOPART study, demonstrated that also general fatigue, a reduction in sex drive due to drugs, a weak mood, bleeding during and/or after sex, and problems in attempts pregnancy have an impact on the relationship.”
• Depression and Anxiety: “The study showed that women with endometriosis had an increased risk of developing major depression…and any depressive disorder… and anxiety disorders…compared to those without endometriosis [80]. Overall, most of the literature agrees to consider depression, anxiety, and emotional distress more frequently in women with endometriosis than in a healthy population [34]. There is still no agreement on the origin of this evident correlation. Some authors showed that depression and anxiety may be the result of the experience of pelvic pain itself rather than of endometriosis since the rate of these psychological disorders was not different between women with endometriosis-related pelvic pain and those with pelvic pain of another nature [81,82].”
• Economic impact: “The annual economic burden of endometriosis, including direct health care costs and indirect productivity loss, was estimated to be $22 billion in 2002 and $69.4 billion in a 2009 follow-up study, a substantial apparent increase in costs attributed to endometriosis over time [91]….in the five years before an endometriosis diagnosis, costs were $7028 higher among patients with endometriosis compared with matched controls without endometriosis [92]. …The same authors of the above-mentioned review have also shown that, in employed women with endometriosis, as a consequence of productivity loss of 6.3 h per week, the total loss per person is approximately $10,177.54 per year [49].”

3. Treatment:

• When looking at surgery, skill and expertise is important for outcomes. While surgery “has been shown to significantly improve endometriosis-associated symptoms”, its success “is directly correlated with factors such as surgical experience, the complexity of each case and anatomical locations of the disease” (Working group of ESGE et al., 2020). The Working Group of ESGE et al. (2020) published their recommendations for deep infiltrating endometriosis (DIE) of “how different types of surgery should be performed, taking potential risks into consideration, and stresses that careful planning and involving different surgeons specialising in bowel or bladder is essential to ensure the best outcomes”. You can read more about that here.
• Some studies have looked into ways to enhance the visibility during surgery as “the identification of endometriotic tissue during laparoscopy is not always clear which may partly contribute to the high rates of recurrence reported after surgical treatment (40–50% at 5 years) [3]” (Lier et al., 2020). Lier et al. (2020) note that “enhanced laparoscopic imaging with 3D white light, combined with NBI, improves the detection rate of peritoneal endometriosis when compared to conventional 2D white-light imaging. The use of these imaging techniques may potentially result in a more complete laparoscopic resection of endometriosis”.

4. Diagnosis:

• Endometriosis has a long delay in diagnosis, which can leave those with it suffering for a long time and without adequate treatment. A definitive diagnosis is achieved through surgery, preferably with pathology confirming it. Research into an easier way to achieve diagnosis, such as through a blood test, is being studied; unfortunately, no biomarkers or blood tests have proven reliability to use for diagnosis yet. Anastasiu et al. (2020) did a review of the research to date and report that “the majority of studies focused on a panel of biomarkers, rather than a single biomarker and were unable to identify a single biomolecule or a panel of biomarkers with sufficient specificity and sensitivity in endometriosis.” They conclude that at this time “noninvasive biomarkers, proteomics, genomics, and miRNA microarray may aid the diagnosis, but further research on larger datasets along with a better understanding of the pathophysiologic mechanisms are needed” (Anastasiu et al., 2020). The end goal of a way to diagnose earlier is so “that no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis-associated pain and/or infertility [17–19]” (Fassbender et al., 2015).

Let us hope for a bright future for endometriosis care in 2021. Happy new year to you all!

References

Anastasiu, C. V., Moga, M. A., Elena Neculau, A., Bălan, A., Scârneciu, I., Dragomir, R. M., … & Chicea, L. M. (2020). Biomarkers for the Noninvasive Diagnosis of Endometriosis: State of the Art and Future Perspectives. International Journal of Molecular Sciences, 21(5), 1750.  Retrieved from https://www.mdpi.com/1422-0067/21/5/1750

Carlyle, D., Khader, T., Lam, D., Vadivelu, N., Shiwlochan, D., & Yonghee, C. (2020). Endometriosis Pain Management: a Review. Current Pain and Headache Reports, 24(9), 1-9.  Retrieved from https://link.springer.com/article/10.1007/s11916-020-00884-6

Della Corte, L., Di Filippo, C., Gabrielli, O., Reppuccia, S., La Rosa, V. L., Ragusa, R., … & Giampaolino, P. (2020). The burden of endometriosis on women’s lifespan: a narrative overview on quality of life and psychosocial wellbeing. International Journal of Environmental Research and Public Health, 17(13), 4683. Retrieved from https://www.mdpi.com/1660-4601/17/13/4683/htm

Demetriou, L., Cox, E., Lunde, C., Becker, C., Invitti, A., Martínez-Burgo, B., … & Zondervan, K. (2020). A commentary on the need for support with mental as well as physical health for people with endometriosis during the COVID-19 pandemic and beyond. Authorea Preprints.  Retrieved from https://d197for5662m48.cloudfront.net/documents/publicationstatus/54168/preprint_pdf/921ccb14a9dcae7291958ce34ba67304.pdf

Fassbender, A., Burney, R. O., F O, D., D’Hooghe, T., & Giudice, L. (2015). Update on biomarkers for the detection of endometriosis. BioMed research international, 2015. Retrieved from https://www.hindawi.com/journals/bmri/2015/130854/

Leonardi, M., Horne, A. W., Armour, M., Missmer, S. A., Roman, H., Rombauts, L., … & Johnson, N. P. (2020). Endometriosis and the Coronavirus (COVID-19) Pandemic: Clinical Advice and Future Considerations. Frontiers in Reproductive Health, 2, 5.  Retrieved from https://www.frontiersin.org/articles/10.3389/frph.2020.00005/full?fbclid=IwAR2FwiMuHuKb4UW6PVVBz2WuktOK7InbdzMD8DAQ0Df3JD-dPmgEYiOPs3E

Lier, M. C., Vlek, S. L., Ankersmit, M., van de Ven, P. M., Dekker, J. J., Bleeker, M. C., … & Tuynman, J. B. (2020). Comparison of enhanced laparoscopic imaging techniques in endometriosis surgery: a diagnostic accuracy study. Surgical Endoscopy, 34(1), 96-104.  Retrieved from https://link.springer.com/article/10.1007/s00464-019-06736-8

Working group of ESGE, ESHRE, and WES, Keckstein, J., Becker, C. M., Canis, M., Feki, A., Grimbizis, G. F., … & Tanos, V. (2020). Recommendations for the surgical treatment of endometriosis. Part 2: deep endometriosis. Human Reproduction Open, 2020(1), hoaa002. Retrieved from https://academic.oup.com/hropen/article/2020/1/hoaa002/5733057?login=true

4 years ago Endometriosis , Endometriosis Education

The Importance of Rest

We wish you hope this holiday season- hope that you will find answers to your questions and relief for your pain. Hope that the new year will bring you joy and peace.

With the holiday season in full swing, it is good to remember the importance of rest. In the busyness that seems to accompany everyday life, along with holidays thrown in, we forget that winter is a time for rest and renewal. If you live in the northern hemisphere, we recently had winter solstice- the shortest day and the longest night of the year. This marks the beginning of winter. Nature sets the example of rest during winter. Most plants take a break. Many animals hibernate. We need that too.

Rest includes physical, mental, emotional, and spiritual rest. All these aspects intertwine with each other and one being out of balance can affect the other. For example, when looking at physical demand on muscles versus mental, “it has been demonstrated that the same motor units are activated by mental stress as by physical demands…lack of rest and recovery seems even more important for health than the magnitude of stress and physical demands during work” (Lundberg, 2003). Rest is not a luxury. It is an essential aspect of health and well-being.

Happy Holidays!

Reference

Lundberg, U. (2003). Psychological stress and musculoskeletal disorders: psychobiological mechanisms. Lack of rest and recovery greater problem than workload. Lakartidningen, 100(21), 1892-1895. Retrieved from https://europepmc.org/article/med/12815874

4 years ago Endometriosis , Endometriosis Education

A Letter to Providers from Two Endo Patients

Two people with endometriosis wanted to share their story of how providers made a difference in their journey. Based on their experience, they share their thoughts on what healthcare can do to make a difference. A big thank you to all the providers who have helped us on our journey. You will never know how much it meant and what a difference it made in our lives.Read on:

At 14, I got my first period.  I remember distinctly when I saw my regular pediatrician, and she asked about my monthly period.  I told her that it was painful, and I was overwhelmingly exhausted.  I very vividly remember my female pediatrician quietly shutting the door of the exam room and explaining to me that this is “normal”, that she too is often very tired during her period and has cramping.  Little did I realize at that time, that historically and culturally, medicine has diminished and frequently discredited the pain that women had during their menstrual cycles – labeling it as “hysteria”.

When I was first diagnosed with endometriosis, I (along with most newly diagnosed) had no understanding of the challenges that would be placed in front of me.  I naively believed that my doctors would have answers, that I would receive the right treatment, and that I would be able to move on with my life.

And then I realized how woefully incorrect I was.

So, in 2020, what can be done differently?  Can we do better?  WE CAN and WE MUST!

As physicians, you may not ever understand what it is like to have endometriosis. Especially if you are a male.  And that is okay.  We, as patients, understand and do not expect you as a physician to completely get it.

However, please understand that endometriosis does NOT affect every person the same way.  One person may not be able to function, unable to go to school or work, when she has her period.  Another woman may have stage IV endometriosis and adenomyosis and work an incredibly demanding job and have a more demanding schedule- long days, long nights, and often working weekends.  Yet, she still functions and gets by.  While another woman may be struggling to keep up with her college classes so much that she must drop out of college and cannot work due to her pain levels (even though she is found to “only” have stage II endometriosis).  Another woman may be struggling to get pregnant but denies any obvious symptoms of endometriosis- yet during a diagnostic laparoscopy, she is found to have stage III endometriosis.  Here alone are several DIFFERENT women with all quite different presentations of this disease.

In addition to understanding the patient experience, understand that many of us have been through a long journey to get a diagnosis and to find treatment.

Many tell us to get pregnant and we would be cured.  Gynecologists have said that many people experience a reprieve from symptoms during pregnancy and breast feeding.  But have symptoms return shortly after.  What if I took that advice?  As a single woman just trying to finish college, surviving only on heavy duty narcotics, how could I possibly manage the care of a child?  Would I have made a good mother having to take a long leave of absence from my dream job due to severe pain? I was not the first person to ever receive this piece of advice and sadly we will not be the last. (See Myths and Misinformation)

Many have told us that taking hormonal treatments – continuous birth control, Lupron, Synarel, Danazol, Depo Provera, Orilissa, or other like drugs, would make us feel better.   For some people, it may have helped them.  However, many of us have walked away with minimal to no relief – instead, a slew of different side effects.  Hot flashes, migraines, fatigue, brain fog, bone loss, worsening pain.  Sometimes the side effects would go away.  Sometimes not.  As a 21-year-old college student, I had the early onset of osteoporosis.   Eventually these side effects went away, or I was able to reverse them.  For some, they are not as lucky and are stuck with permanent side effects.  I was lucky.  (See Hormonal Treatments)

Sometimes we are told that having surgery every couple of years is something to be expected when living with endometriosis.  Ablation is the only way to remove endometriosis.  Just get used to it, I was told.  That is what happens when you have endometriosis.

And then I learned different.  I found resources such as the Endometriosis Research Center – their Yahoo ListServ (okay so maybe it dates me) and Nancy’s Nook on Facebook.  I learned about excision surgery and found a specialist.   The answer was there all along, but the doctors around me did not know that it was an option.  Some can excise some endometriosis but not all areas- or do not have the knowledge to recognize some different appearances of endometriosis.  Many of us unfortunately must travel to another state or even to another country to seek out better, more specialized care.  Often those impacted by endometriosis must pay privately for expert care or fight their insurance companies for coverage of expert care.

Our health care system can do better.  We CAN do better, and we will DO better.  So, how do we do that? How can patient care providers/health care providers do that?  How can they help their patients as they struggle with endometriosis?

It is called providing patient-centered, evidence-informed, patient care.  So, what does that mean? What does that look like?

Guekens (2018) and his colleagues identify 5 different dimensions of patient-centered endometriosis care:

1. Respect for the patient’s values, preferences, and needs

2. Information, communication, and education

3. Continuity and transition

4. Access to care

5. Technical Skills

From another patient story we see such an example:

When I was in college and my local OBGYN realized that my endometriosis was more complicated and severe, she referred me to a specialist at a university level hospital – her professor.   She realized that I needed care beyond her capabilities, so she referred me out.  THAT is patient-centered, evidence-informed, patient care.

When that specialist respects my hope to finish a year of college, provides me with pain management techniques, and puts off surgery until I am ready.  THAT is patient-centered, evidence-informed, patient care.

Eighteen years ago, I came across an organization called the Endometriosis Research Center and learned from some very smart women and physicians the concept of excision surgery.  I learned about the best evidence-based treatment for endometriosis is excision.

A wise mentor and fellow endometriosis patient once told me that “communication is useless if you perpetuate misinformation” (Pierce-Richards, 2019).   We CAN do better.  It is YOUR responsibility to educate yourself, your staff, and your patients.  What we say about endometriosis matters and it CAN be life changing for that patient, to finally be listened to, their suffering be acknowledged, accepted, and addressed.

Two years ago, my endometriosis symptoms worsened to the point where I could barely function.  Getting to work every day, taking care of my daughter, and just keeping up with day-to-day responsibilities was nearly impossible due to pain and it exhausted me. I spent a lot of time in bed. I initially saw my local OBGYN and contemplated having surgery with her as she was local.  However, after reviewing research and learning how effective excision surgery is, I sought out opinions from a couple of local endometriosis excision specialists and a well-known endometriosis excision specialist across the country. (See Why Excision)  I then spoke with my local primary care physician whom I worked with and told her that we had chosen to travel to Washington to obtain better care. She supported my choice and was instrumental in coordinating my care prior to leaving for Washington and when I returned.  Each transition was easier because she was there advocating for me and was a quick phone call away with any questions or concerns.

What if there was a physician that respected your values, respected you for where you were in your journey, and respected your preferences/needs?

What if there was a physician that, although was not considered an expert in endometriosis, but was able to refer their patients to accurate, up-to-date, reliable sources of information about endometriosis?

What if that very same physician helped facilitate their patient receiving effective, evidence-based treatment – i.e. excision surgery? This physician could write a letter supporting the patient’s decision to seek out expert care to help the patient with their insurance appeals or help ease the transition when they return home after surgery.

What if that physician desires to learn more about endometriosis and wishes to become a specialist? To learn about the expertise of excision surgery and to expand their knowledge?

We can very quickly say (ALL of us) how unhappy we are with the year 2020 and the current state of affairs. 

We can simply blame it on poor reimbursement by insurance companies . Yes, that’s a problem.

We could say that there is not enough time in an appointment to devote to these patients.  Yes, we see that.

We could say that due to COVID, we cannot travel or attend any conferences. Or that we cannot possibly attend another meeting via Zoom.  Yes, we can certainly say that. 

We could say that our budget is limited due to COVID-related shut downs, I cannot afford to spend more on education.  Yes, we could say that too.

Here’s the deal – YOU can be that physician! We could come up with a million reasons why it will not work.   However, YOU always have an opportunity to learn.  Brian Tracy once said “those people who develop the ability to continuously acquire new and better forms of knowledge that they can apply to their work and to their lives will be the movers and shakers in our society for the indefinite future” (Tracy, n.d.).

Will you take the opportunity to be that “mover and shaker” in society that leads to positive change?

References

Geukins, E. I., Apers, S., Meuleman, C., D’Hooghe, T. M., & Dancet, E. A. F. (2018). Patient-centeredness and endometriosis: Definition, measurement, and current status. Best Practice & Research. Clinical Obstetrics & Gynaecology, 50, 11-17. https://doi.org/10.1016/j.bpobgyn.2018.01.009

Pierce-Richards, Susan (2019, November 9-13).  Brokengirl: The Secret Shame of Chronic Pelvic Pain and the Unseen Consequences of our Current Care Paradigm for Endometriosis Care [Conference Presentation]. AAGL 2019 48th Global Conference on MIGS.  Vancouver, British Columbia, Canada.

Tracy, Brian. (n.d.). Quotes by Brian Tracy. Good Reads. https://www.goodreads.com/quotes/524089-those-people-who-develop-the-ability-to-continuously-acquire-new

4 years ago Endometriosis , Endometriosis Education

Endo Basics: What is endometriosis?

Endometriosis has some unique characteristics, and we continue to find out new things about it. Understanding exactly what it is and how it functions can help us make better sense of the symptoms we experience as well as guide our decisions for treatment. Here are some key points to consider:

• Endometriosis is defined as tissue similar to the lining of the uterus (endometrium) that is found outside of the uterus (Becker, 2015).  This can be in the pelvis and abdominal area, but has been found in areas outside the pelvis (like the diaphragm). This means it affects more than just reproductive organs! (See Locations of Endometriosis)
• Endometriosis has some key differences from the lining of the uterus in both its structure and function. Endometriotic lesions are capable of high estrogen production and have a resistance to the effects of progesterone (Cristescu, Velişcu, Marinescu, Pătraşcu, Traşcă, & Pop, 2013). Endometriosis can also produce cytokines and prostaglandins and is capable of the growth of new blood vessels and nerves (Hey-Cunningham, Peters, Zevallos, Berbic, Markham, & Fraser, 2013; Reis, Petraglia, & Taylor, 2013; Bulun et al., 2012; Chaban, 2012). (See Role of Estrogen Receptor-β in Endometriosis and Progesterone Resistance in Endometriosis)
• Endometriosis is an inflammatory disorder that can lead to scarring and adhesions (Becker, 2015; Mao & Anastasi, 2010). (See Inflammation with Endometriosis)
• The severity of symptoms does not necessarily correlate with extent of lesions (McCance & Huether, 2014). (See What influences pain levels)
• The location of the lesions and the presence of adhesions can also affect the symptoms experienced (Lu, Zhang, Jiang, Zou, & Li, 2014). (See Locations of Lesions and Where Pain Is Felt)
• Most symptoms arise from chronic inflammation, noxious chemical release such as prostaglandins, effects on the musculoskeletal system, and/or adhesions (Koga, Yoshino, Hirota, Hirata, Harada, & Osuga, 2014). (See Symptoms)
• An estimated 30-50% of patients with endometriosis are infertile due to the inflammatory environment and physical abnormalities such as adhesions (Koga, Yoshino, Hirota, Hirata, Harada, & Osuga, 2014). (See Fertility Issues)

References

Becker, C. (2015). Diagnosis and management of endometriosis. Prescriber, 26(20), 17-21. 

Bulun, S. E., Monsavais, D., Pavone, M. E., Dyson, M., Xue, Q., Attar, E., … Su, E. J. (2012). Role of Estrogen Receptor-β in Endometriosis. Seminars in Reproductive Medicine,  30(1), 39–45. http://doi.org/10.1055/s-0031-1299596 

Chaban, V. (2012). Primary afferent nociceptors and visceral pain. INTECH Open Access Publisher. Retrieved from http://www.intechopen.com/books/endometriosis-basicconcepts-and-current-research-trends/primaryafferent-nociceptors-and-visceral-pain  

Cristescu, C., Velişcu, A. N. D. R. E. E. A., Marinescu, B., Pătraşcu, A. N. C. A., Traşcă, E. T., & Pop, O. T. (2013). Endometriosis–clinical approach based on histological findings. Rom J Morphol Embryol, 54(1), 91-97. 

Hey-Cunningham, A. J., Peters, K. M., Zevallos, H. B., Berbic, M., Markham, R., & Fraser, I. S. (2013). Angiogenesis, lymphangiogenesis and neurogenesis in endometriosis. Front Biosci (Elite Ed), 5, 1033-56. 

Koga, K., Yoshino, O., Hirota, Y., Hirata, T., Harada, M., & Osuga, Y. (2014). Infertility Treatment of Endometriosis Patients. In Endometriosis (pp. 431-443). Springer Japan. 

Lu, Z., Zhang, W., Jiang, S., Zou, J., & Li, Y. (2014). Effect of lesion location on endometriotic adhesion and angiogenesis in SCID mice. Archives of gynecology and obstetrics, 289(4), 823-830. 

Mao, A. J., & Anastasi, J. K. (2010). Diagnosis and management of endometriosis: The role of the advanced practice nurse in primary care. Journal of the American Academy of Nurse Practitioners, 22(2), 109-116.

McCance, K. L., & Huether, S. E. (2014). Pathophysiology: The Biological Basis for Disease in Adults and Children (7th ed.). St. Louis, MO: Elsevier.

Reis, F. M., Petraglia, F., & Taylor, R. N. (2013). Endometriosis: hormone regulation and clinical consequences of chemotaxis and apoptosis. Human reproduction update, 19(4), 406-418. 

4 years ago Endometriosis , Endometriosis Education

Self-Care During the Holidays

Holidays can be fun and festive but can also be a source of stress for those dealing with a chronic illness.  It can be hard for friends and family to understand the pain and fatigue that makes it difficult for us to participate in or plan for various activities. Symptoms, like heavy bleeding, significant pain, fatigue, or bowel symptoms, can make even everyday activities difficult. There is also the added strain on finances from medical care and lost wages.

Remember that others may not understand and that’s okay. There will be those who will be sympathetic even if they don’t comprehend…and there will be those who won’t. Focus your energy on what means the most to you.  

Sometimes the pressure comes ourselves and not from others. Don’t be so hard on yourself. Chronic illness can take a toll physically, mentally, and emotionally. It’s important to take care of each of these aspects of health during the holidays. Rest for body and mind is important.  It’s okay to take a break. It’s okay to turn your phone off. It’s okay to not check your messages or social media. It’s okay to disconnect when you need to. It’s okay to say “no” and not offer deeper explanation of why.

What are your tips for dealing with the holidays? Head over to our Facebook group and drop a note in the post.

Links:

• Chronic Illness During the Holidays
• How to Enjoy the Holiday Season When You’re Chronically Ill
• How to survive the holidays when you’re chronically ill

4 years ago Endometriosis , Endometriosis Education

Looking at surgery

Let’s face it. Surgery is scary. Whether it’s your first or your fifth. I think for those of us who have suffered for a long time, the unknown of “will they find anything, will it help, will it be worth it?” lingers in our minds. While surgery is not a magical fix-all, we want to feel as confident as possible when deciding on surgery.

First, it’s important to understand your disease and other related conditions that may be playing part of your symptoms. Start here to begin that learning.

Second point is to know your options for treatment and discuss the pros and cons with your provider.

Third is making an informed choice based on that knowledge. A little research can go a long way. When discussing surgery, here are some things to consider. We have many members on our Facebook group who have recommended surgeons to others based on their individual results. We can do our due diligence when asking others about a surgeon or asking questions ourselves. But what if this was taken a step further?

What is surgical vetting?

Surgical vetting involves peer reviewed assessment and feedback on video documented surgical procedures. For instance, a 2013 study looked at the different skill sets that played into surgical outcomes (Birkmeyer et al., 2013). The authors stated that:

“Clinical outcomes after many complex surgical procedures vary widely across hospitals and surgeons. Although it has been assumed that the proficiency of the operating surgeon is an important factor underlying such variation, empirical data are lacking on the relationships between technical skill and postoperative outcomes.” (Birkmeyer et al., 2013)

In order to assess this, the study utilized this method:

“Each surgeon submitted a single representative videotape of himself or herself performing a laparoscopic gastric bypass. Each videotape was rated in various domains of technical skill on a scale of 1 to 5 (with higher scores indicating more advanced skill) by at least 10 peer surgeons who were unaware of the identity of the operating surgeon. We then assessed relationships between these skill ratings and risk-adjusted complication rates, using data from a prospective, externally audited, clinical-outcomes registry involving 10,343 patients.” (Birkmeyer et al., 2013)

Their findings?

“The technical skill of practicing bariatric surgeons varied widely, and greater skill was associated with fewer postoperative complications and lower rates of reoperation, readmission, and visits to the emergency department. Although these findings are preliminary, they suggest that peer rating of operative skill may be an effective strategy for assessing a surgeon’s proficiency.” (Birkmeyer et al., 2013)

In 2016, a follow up article on that study noted:

“Recently, enthusiasm has been growing to tackle the challenges of directly evaluating and improving surgeon performance using intraoperative video. This work with practicing surgeons builds on the previous experience of using video to assess laparoscopic skills among residents…. While the use of video analysis to improve skill and technique is promising, one particularly important challenge must be recognized: building surgeon trust and social capital. In the bariatric surgery examples described above, this was accomplished over time through a spirit of collaboration that fostered relationships and a shared goal of quality improvement among surgeons in Michigan. For this process to succeed, these initiatives would first need to be piloted on a smaller scale through individual institutions or regional collaboratives to build social capital and ensure surgeon “buy-in”. Once established locally, a professional society (e.g. the American College of Surgeons, Society of Thoracic Surgeons, depending on the specialty or interest) could serve as a potential framework through which a program could be implemented more broadly. It will be necessary to clearly establish that skill assessment would be strictly for quality improvement purposes, ensuring complete confidentiality for participating surgeons. Through these steps, a collaborative infrastructure can be built to implement video-based analysis in a real-world practice setting.” (Grenda, Pradarelli, & Dimick, 2016)

Other studies have utilized similar methods. For instance, one done in 2010 to assess the skill accreditation system for laparoscopic gastroenterologic surgeons in Japan used “non-edited videotapes” that “were assessed by two judges in a double-blinded fashion with strict criteria” (Mori, Kimura, & Kitajima, 2010). Their study found that “surgeons assessed by this system as qualified experienced less frequent complications when compared to those who failed” (Mori, Kimura, & Kitajima, 2010). A similar approach was taken for urological laparoscopy with an 8 year follow up of the system (Matsuda et al., 2006; Matsuda et al., 2014). One article notes that “surgeons are under enormous pressure to continually improve and learn new surgical skills” and that the use of video technology can be useful to that means, especially as it is “becoming easier as most of our surgical platforms (e.g., laparoscopic, and endoscopy) now have video recording technology built in and video editing software has become more user friendly” (Ibrahim, Varban, & Dimick, 2016). The use of this technology may at one point lead to “future applications of video technology are being developed, including possible integration into accreditation and board certification” (Ibrahim, Varban, & Dimick, 2016).

How can this be used to help patients with endometriosis?

There are many dedicated, hard-working, and skilled surgeons out there, but it can be difficult for patients and other providers to connect with them. Not only can video vetting assist in surgeons being recognized for their skill, but it can also serve as a way for other providers and patients to find them! It can help connect patients and providers with surgeons with specific skill sets that a case may need. For instance, if a surgeon has demonstrated proficiency in working on thoracic endometriosis, then a directory could help providers and patients connect with not only that surgeon, but a multidisciplinary team to address that specialized care need. While there are no guarantees in life, surgical vetting can be another tool in our toolbelt to try to make the best decision we can.

References

Birkmeyer, J. D., Finks, J. F., O’Reilly, A., Oerline, M., Carlin, A. M., Nunn, A. R., … & Birkmeyer, N. J. (2013). Surgical skill and complication rates after bariatric surgery. New England Journal of Medicine, 369(15), 1434-1442. Retrieved from https://www.nejm.org/doi/full/10.1056/nejmsa1300625

Grenda, T. R., Pradarelli, J. C., & Dimick, J. B. (2016). Using surgical video to improve technique and skill. Annals of surgery, 264(1), 32. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5671768/

Ibrahim, A. M., Varban, O. A., & Dimick, J. B. (2016). Novel uses of video to accelerate the surgical learning curve. Journal of Laparoendoscopic & Advanced Surgical Techniques, 26(4), 240-242. Retrieved from https://www.liebertpub.com/doi/abs/10.1089/lap.2016.0100

Matsuda, T., Ono, Y., Terachi, T., Naito, S., Baba, S., Miki, T., … & Okuyama, A. (2006). The endoscopic surgical skill qualification system in urological laparoscopy: a novel system in Japan. The Journal of urology, 176(5), 2168-2172. Retrieved from https://www.auajournals.org/doi/abs/10.1016/j.juro.2006.07.034

Matsuda, T., Kanayama, H., Ono, Y., Kawauchi, A., Mizoguchi, H., Nakagawa, K., … & Referee Committee of the Endoscopic Surgical Skill Qualification System in Urological Laparoscopy. (2014). Reliability of laparoscopic skills assessment on video: 8-year results of the endoscopic surgical skill qualification system in Japan. Journal of endourology, 28(11), 1374-1378. Retrieved from https://www.liebertpub.com/doi/abs/10.1089/end.2014.0092

Mori, T., Kimura, T., & Kitajima, M. (2010). Skill accreditation system for laparoscopic gastroenterologic surgeons in Japan. Minimally Invasive Therapy & Allied Technologies, 19(1), 18-23.  Retrieved from https://www.tandfonline.com/doi/abs/10.3109/13645700903492969

4 years ago Endometriosis , Endometriosis Education

Sciatic Pain and Endometriosis

While endometriosis may not necessarily have to be on the sciatic nerve to cause similar symptoms, there have been some cases documented of that happening. Some symptoms could be: cyclical pain along the sciatic nerve (sciatica), back pain, gluteal pain radiating to the front of the thigh and outside the lower leg, positive straight leg raise test (seen in low back disc injuries as well), sensory loss, changes in reflexes, and muscle weakness (Foti et al., 2018). There are multiple case studies demonstrating endometriosis affecting the sciatic nerve region. However, symptoms can occur from lesions near those areas (like the side posterior pelvic region) (Vilos, Vilos, & Haebe, 2002). Pelvic floor dysfunction and other myofascial disorders (such as piriformis syndrome) can also cause similar symptoms (Cass, 2015; Weiss, Rich, & Swisher, 2012). As is often seen with endometriosis, there may be more than one pain/symptom generator present. This might mean utilizing different providers, such as a pelvic physical therapist as well as a surgeon, in order to address all the underlying issues. (See Pelvic Floor Dysfunction and Physical Therapy Resources )

Links:

• Can endometriosis affect the sciatic region?
• Deep endometriosis of sacral root, piriform muscle, low rectum: sciatic pain, dysuria and occlusion – a horrific disease
• Is Sciatic Endometriosis Possible?
• Video: Endometriosis of the Sciatic Nerve with large infiltration of the pelvic sidewall

Studies:

• Vilos, G. A., Vilos, A. W., & Haebe, J. J. (2002). Laparoscopic findings, management, histopathology, and outcomes in 25 women with cyclic leg pain. The Journal of the American Association of Gynecologic Laparoscopists, 9(2), 145-151. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S1074380405601223

“Cyclic leg signs and symptoms were associated with pelvic peritoneal pockets, endometriosis nodules, or surface endometriosis of the posterolateral pelvic peritoneum. We hypothesize that the pain associated with these lesions is more likely referred pain originating from pelvic peritoneum than direct irritation of the lumbosacral plexus of the sciatic nerve.”

• Troyer, M. R. (2007). Differential diagnosis of endometriosis in a young adult woman with nonspecific low back pain. Physical therapy, 87(6), 801-810. Retrieved from https://academic.oup.com/ptj/article/87/6/801/2747261  

“Endometriosis is a common gynecological disorder that can cause musculoskeletal symptoms and manifest as nonspecific low back pain. The patient was a 25-year-old woman who reported the sudden onset of severe left-sided lumbosacral, lower quadrant, buttock, and thigh pain. The physical therapist examination revealed findings suggestive of a pelvic visceral disorder during the diagnostic process. The physical therapist referred the patient for medical consultation, and she was later diagnosed by a gynecologist with endometriosis and a left ovarian cyst.”

• Bove, G. M. (2016). A model for radiating leg pain of endometriosis. Journal of bodywork and movement therapies, 20(4), 931-936. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5116304/

“Radiating leg pain related to the menstrual cycle has been reported as a complication of endometriosis in a number of case studies (Baker et al., 1966; Bjornsson, 1976; Denton & Sherrill, 1955; Floyd et al., 2011; Forrest & Brooks, 1972; Head et al., 1962; Motamedi et al., 2015; Pacchiarotti et al., 2013), and in two surveys (Missmer & Bove, 2011; Walch et al., 2014). A consistent and thus perhaps key diagnostic feature seems to be the cyclical or catamenial nature of the symptom, especially earlier in the progression of the endometriosis (Capek et al., 2016; Dhote et al., 1996; Moeser et al., 1990; Takata & Takahashi, 1994; Zager et al., 1998). However, the symptom duration usually expands with endometriosis progression, developing into constant pain if left untreated.

“Examination findings in women with leg pain due to endometriosis are typical of sciatica due to other causes (Torkelson et al., 1988), including painful straight leg raising testing, and may also include a diminished Achilles tendon reflex, mild muscular atrophy, and tenderness of the sciatic nerve at the sciatic notch. Lumbar spinal investigations (myelogram, CSF analysis) are usually unremarkable, but magnetic resonance imaging can demonstrate larger lesions (Binkovitz et al., 1991; Cottier et al., 1995; Yekeler et al., 2004).

“Surgical descriptions of sciatic endometriosis describe inflammatory lesions that involve surrounding structures that are not necessarily otherwise diseased (Descamps et al., 1995; Yekeler et al., 2004). In an animal model, it has been shown that a focal inflammation of the sciatic nerve (called sciatic neuritis) evokes mechanical sensitivity in the axons of a subset of nociceptive (potentially pain-evoking) neurons without causing overt nerve damage (Bove et al., 2003; Dilley & Bove, 2008; Dilley et al., 2005). Furthermore, the sheaths of nerve trunks are innervated by mechanically and chemically-sensitive nociceptors (Bove & Light, 1995a, b, 1997), which also participate in maintaining the local environment of the nerve (Sauer et al., 1999). These findings suggest that inflamed nerves are a source of pain perceived as coming from the nerve and as coming from the structure(s) that the nerve innervates.”

• Lomoro, P., Simonetti, I., Nanni, A., Cassone, R., Di Pietto, F., Vinci, G., … & Sammarchi, L. (2019). Extrapelvic Sciatic Nerve Endometriosis, the Role of Magnetic Resonance Imaging: Case Report and Systematic Review. Journal of Computer Assisted Tomography, 43(6), 976-980. Retrieved from https://journals.lww.com/jcat/Abstract/2019/11000/Extrapelvic_Sciatic_Nerve_Endometriosis,_the_Role.25.aspx

“Endometriosis (EN) is a common gynecological condition characterized by the presence of functional endometrium located outside the uterine cavity. Sciatic nerve (SN) is rarely affected by EN. Magnetic resonance imaging allows a direct visualization of the spinal and SN, and it is the modality of choice for the study of SN involvement in extrapelvic EN. We report a case of an endometrioma located in the right SN with a systematic review of the literature.”

• Le, A., Ocampo, J. E., & Zaritsky, E. (2020). Nerve Evaluation during Laparoscopic Endometriosis Resection. Journal of Minimally Invasive Gynecology, 27(7), S106. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465020305446

“The patient is a 49-year-old perimenopausal woman with dysmenorrhea and a left ovarian cyst who presented for evaluation of new onset left hip and leg pain. The left ovarian cyst was first noted 4 years ago and the patient declined surgery at that time, instead opting for surveillance with repeat imaging which now demonstrated an interval increase in the cyst size. The patient had an extensive evaluation for her leg pain including MRI and nerve conduction studies which were all unremarkable. The patient declined medical management or definitive surgical treatment of the suspected endometriosis. She opted for a diagnostic laparoscopy and left ovarian cystectomy.”

• Roca, M. U., Bandeo, L., Saucedo, M. A., Bala, M., Binaghi, D., Chertcoff, A., … & Pardal, M. F. (2019). Cyclic Sciatica: Presentation of a Case With Intra and Extrapelvic Endometriosis Affecting the Sciatic Nerve and Utility of MR Neurography (P3. 4-026). Retrieved from https://n.neurology.org/content/92/15_Supplement/P3.4-026.abstract  

“A 35-year-old female patient consulted for right low back pain extending along her posterior thigh, calf and foot since 2 years. The pain was recurrent, acute in onset, lasted several days and gradually diminished until disappearing. It was refractory to common analgesics and during the crisis she had difficulties to walk. Neurologist requested a calendar of pain in which the relationship between the menstrual cycle and the pain became evidenced. We performed MRN of the lumbo sacral plexus that showed multiple endometriotic implants in ovaries, L5-S1 roots and a huge one on the sciatic nerve (intra and extrapelvic segment). The patient started oral contraceptives but presented progressive worsening of pain until it became constant and developed step page. Electromyogram showed acute and chronic axonal damage in the sciatic nerve distribution. Medical treatment was changed to leuprolide acetate. The patient evolved with improvement of ovarian endometriosis but persistence of sciatic nerve lesions, leg pain and weakness up to now. Surgical option was considered.”

• Mannan, K., Altaf, F., Maniar, S., Tirabosco, R., Sinisi, M., & Carlstedt, T. (2008). Cyclical sciatica: endometriosis of the sciatic nerve. The Journal of bone and joint surgery. British volume, 90(1), 98-101. Retrieved from https://online.boneandjoint.org.uk/doi/full/10.1302/0301-620X.90B1.19832

“A 25-year-old woman presented to her general practitioner with a two-month history of constant pain in her thigh. There was no history of trauma and the onset was insidious. A diagnosis of a soft-tissue injury was made. However, despite anti-inflammatory medication and physiotherapy she developed increasing pain, typically sciatic in nature, from the left buttock, radiating down the posterolateral aspect of the leg and heel. This would escalate to a severe left-sided sciatic pain during menstruation. Two years later she had developed a limp and was referred to an orthopaedic surgeon. At the time of clinical assessment she had marked pain (Visual Analogue Scale (VAS)2 7 and Peripheral Nerve Injury (PNI) scale3 2) and required either two crutches or a wheelchair. On examination, she had an antalgic gait and was unable to bear weight fully on her left leg because of the pain in her buttock and leg. The pain was exacerbated by hip flexion and knee extension. There was no apparent muscle wasting or sympathetic changes in the leg and foot. Palpation of the left gluteal region, especially over the sciatic notch, was painful. Motor power was preserved throughout the leg, except for some weakness in the biceps femoris. Straight-leg raising was to 30° only. Reflexes were present, but the ankle jerk only with reinforcement. Sensation to pin-prick, temperature and light touch was reduced in the heel and sole of the foot.

“The diagnosis of sciatic endometriosis was considered…Histopathological examination confirmed endometriosis of the sciatic nerve with no evidence of malignancy (Figs 4 and 5). Post-operatively and at 12 months follow-up her pain was considerably relieved (VAS2 2, PNI3 1). She was able to walk without crutches and could straighten the leg. There was an improvement in sensation over the heel and sole of the foot to pin-prick, temperature and light touch. She was referred to a gynaecologist, who performed a laparoscopy which now showed no evidence of intra-pelvic endometriosis.”

• Yanchun, L., Yunhe, Z., Meng, X., Shuqin, C., Qingtang, Z., & Shuzhong, Y. (2019). Removal of an endometrioma passing through the left greater sciatic foramen using a concomitant laparoscopic and transgluteal approach: case report. BMC women’s health, 19(1), 95. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6624926/

“A 20-year-old woman presented with complaints of severe dysmenorrhea lasting for more than 6 years and dysfunction of her left lower limb lasting for approximately 4 months. Both CT and MRI demonstrated a suspected intrapelvic and extrapelvic endometriotic cyst (7.3 cm × 8.1 cm × 6.5 cm) passing through the left greater sciatic foramen. Laparoscopic exploration showed a cyst full of dark fluid occupying the left obturator fossa and extending outside the pelvis. A novel combination of transgluteal laparoscopy was performed for complete resection of the cyst and decompression of the sciatic nerve. Postoperative pathology confirmed the diagnosis of endometriosis. Long-term follow-up observation showed persistent pain relief and lower limb function recovery in the patient.”

• Osório, F., Alves, J., Pereira, J., Magro, M., Barata, S., Guerra, A., & Setúbal, A. (2018). Obturator internus muscle endometriosis with nerve involvement: a rare clinical presentation. Journal of minimally invasive gynecology, 25(2), 330-333. Retrieved from https://www.sciencedirect.com/science/article/pii/S1553465017304004

“We report a case of a 32-year-old patient who presented with cyclic leg pain in the inner right thigh radiating to the knee caused by a cystic endometriotic mass in the obturator internus muscle with nerve retraction…. Surgical removal of the mass was performed using the laparoscopic approach… A mass located within the right obturator internus muscle, below the right iliac external vein, behind the corona mortis vein, and lateral to the right obturator nerve was identified. The whole region was inflamed, and the nerve was partially involved. Dissection was performed carefully with rupture of the tumor, releasing a chocolate like fluid (Fig. 2), and the cyst was removed. Pathology examination was consistent with endometriosis. Patient improvement was observed, with pain relief and improved ability for right limb mobilization.”

• Lemos, N., D’Amico, N., Marques, R., Kamergorodsky, G., Schor, E., & Girão, M. J. (2016). Recognition and treatment of endometriosis involving the sacral nerve roots. International urogynecology journal, 27(1), 147-150. Retrieved from https://link.springer.com/article/10.1007%2Fs00192-015-2703-z

“The signs suggestive of intrapelvic nerve involvement include perineal pain or pain irradiating to the lower limbs, lower urinary tract symptoms, tenesmus or dyschezia associated with gluteal pain. Whenever deeply infiltrating lesions are present, the patient must be asked about those symptoms and specific MRI sequences for the sacral plexus must be taken, so that the equipment and team can be arranged and proper treatment performed.”

• Walch, K., Kernstock, T., Poschalko-Hammerle, G., Gleiß, A., Staudigl, C., & Wenzl, R. (2014). Prevalence and severity of cyclic leg pain in women with endometriosis and in controls–effect of laparoscopic surgery. European Journal of Obstetrics & Gynecology and Reproductive Biology, 179, 51-57. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S0301211514003029

“Before surgery, more women were affected by leg pain in the endometriosis group, compared to the control group (45.5% and 25.9%, respectively). Preoperative VAS scores for leg pain, however, were not significantly different between the two groups. A moderate correlation in the preoperative VAS scores between leg pain and dysmenorrhea was observed. After laparoscopy, we found a significant improvement in leg pain intensity in both groups. Conclusions: The prevalence of leg pain is increased in endometriosis, while leg pain intensity is not, compared to women without endometriosis. Laparoscopic surgery—even without preparation and decompression of nerve tissue—is associated with an improvement in pain intensity in women with endometriosis, as well as in the group without endometriosis.”

• Weiss, P. M., Rich, J., & Swisher, E. (2012). Pelvic floor spasm: the missing link in chronic pelvic pain. Contemporary OB/GYN.  Retrieved from https://www.contemporaryobgyn.net/view/pelvic-floor-spasm-missing-link-chronic-pelvic-pain

“Pelvic floor dysfunction can also arise in response to other common chronic pain syndromes, such as endometriosis, irritable bowel disease, vulvodynia, and interstitial cystitis. A prospective evaluation of patients with chronic pelvic pain of various etiologies found abnormal musculoskeletal findings in 37%, versus 5% of controls.7 For this reason, the pelvic floor should be included in any evaluation regardless of the suspected source of pelvic pain.”

References

Foti, P. V., Farina, R., Palmucci, S., Vizzini, I. A. A., Libertini, N., Coronella, M., … & Milone, P. (2018). Endometriosis: clinical features, MR imaging findings and pathologic correlation. Insights into imaging, 9(2), 149-172. Retrieved from https://link.springer.com/article/10.1007/s13244-017-0591-0

Vilos, G. A., Vilos, A. W., & Haebe, J. J. (2002). Laparoscopic findings, management, histopathology, and outcomes in 25 women with cyclic leg pain. The Journal of the American Association of Gynecologic Laparoscopists, 9(2), 145-151. Retrieved from https://www.sciencedirect.com/science/article/abs/pii/S1074380405601223

4 years ago Endometriosis , Endometriosis Education

Symptoms- from typical to atypical

Endometriosis symptoms can vary widely in both presentation and severity. While endometriosis can present with “typical” symptoms such as chronic pelvic pain during menstruation, it can also present with symptoms not readily attributed to endometriosis. One example is sciatica type symptoms- pain running along the lines of the sciatic nerve (from the low back down the back of the leg). For some, infertility rather than pain is the first sign that they note.

Pelvic Endometriosis:

The following study performed a literature review on pelvic endometriosis in order to identify signs and symptoms (hoping to lead to more timely investigation into the possibility of endometriosis).

Riazi, H., Tehranian, N., Ziaei, S., Mohammadi, E., Hajizadeh, E., & Montazeri, A. (2015). Clinical diagnosis of pelvic endometriosis: a scoping review. BMC women’s health, 15(1), 39. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4450847/pdf/12905_2015_Article_196.pdf 

• Pain:
  • Pain with periods (dysmenorrhea)- during and at the end of menstruation
  • Pelvic pain before and during menstruation
  • Pain during sexual intercourse or after sex (dyspareunia) 
  • Lower abdominal pain or suprapubic pain
  • Lower back pain and loin pain
  • Chronic pelvic pain (lasting ≥6 months) 
  • Pain between periods (intermenstrual pain)
  • Ovulation pain
  • Rectal pain (throbbing, dull or sharp, exacerbated by physical activity)
  • Pain often worsened over time and changed in character
• Menstrual symptoms:
  • Heavy or prolonged periods (hypermenorrhea or menorrhagia)
  • Premenstrual spotting for 2–4 days
  • Mid cycle bleeding
  • Irregular bleeding
  • Irregular periods 
• Urinary problems:
  • Pain with urination (dysuria)
  • Blood in urine (hematuria)
  • Urinary frequency
  • Urinary tract infection
  • Inflammation of the bladder (cystitis) 
• Digestive symptoms:
  • Abdominal bloating
  • Diarrhea with period
  • Painful bowel movements
  • Painful defecation (dyschezia) during periods
  • Blood in stool (hematochezia)
  • Nausea and stomach upset around periods
  • Constipation
  • Irritable bowel syndrome (IBS)
  • Early satiety 
• Gynecologic comorbidities:
  • Gynecological infections and low resistance to infection
  • Candidiasis
  • Infertility
  • Pelvic inflammatory disease
  • Ovarian cysts
  • Bleeding after sex (postcoital bleeding) 
• Comorbidities:
  • wide range of allergies and allergic disease
  • dizziness
  • migraines and headaches at the time of period or before
  • mitral valve prolapse  
• Social life symptoms:
  • Inability to carry on normal activities including work or school
  • Depressed and anxious feelings
  • Irritability or premenstrual tension syndrome
  • Psychoemotional distress
• Musculoskeletal symptoms:
  • muscle/bone pain
  • joint pain
  • leg pain
• Other symptoms:
  • Chronic fatigue, exhaustion, low energy 
  • Low-grade fever
  • Burning or hypersensitivity- suggestive of a neuropathic component
  • Mictalgia (pain with urination)

Some signs of endometriosis in other places/specific places might include:

• Bowel:
  • Abdominal pain
  • Disordered defecation (dyschezia)
  • Having to strain harder to have a bowel movement or having cramp like pain in the rectum (tenesmus)
  • Bloating, abdominal discomfort (meteorism)
  • Constipation
  • Diarrhea
  • Alternating constipation/diarrhea
  • Painful defecation
  • Dark feces containing blood (melena) or fresh blood with bowel movements (hematochezia) (Charatsi et al., 2018)
  • “The gastrointestinal tract is the most common location of extrapelvic endometriosis (and extragenital pelvic endometriosis when referring to rectum, sigmoid, and bladder)… Symptoms, in general, include crampy abdominal pain, dyschezia, tenesmus, meteorism, constipation, melena, diarrhea, vomiting, hematochezia, pain on defecation, and after meals. The traditional cyclical pattern of symptomatology has not been confirmed by recent studies which postulate a rather noncyclical chronic pelvic pain as a more persistent symptom [32]. Cyclical symptoms that aggravate during menses, however, have also been reported in a small number of patients [33, 34]. Since intestinal mucosa is rarely affected, rectal bleeding is also an unusual symptom, reported in 0 to 15% to 30% of patients [15, 35, 36]. Bleeding can also occur due to severe bowel obstruction and ischemia [32, 37]. Acute bowel obstruction due to stenosis is a scarce complication reported only in cases when severe small bowel involvement is present or in the presence of dense pelvic adhesions.” (Charatsi et al., 2018)
• Bladder and Ureters:
  • “feeling the need to urinate urgently,
  • frequent urination,
  • pain when the bladder is full,
  • burning or painful sensations when passing urine,
  • blood in the urine,
  • pelvic pain,
  • lower back pain (on one side)” (Medical News Today, 2018)
  • None (if endometriosis is close to the ureters there may be no presenting symptoms)
  • “Vesical endometriosis is usually presented with suprapubic and back pain or with irritative voiding symptoms [96]. These symptoms generally occur on a cyclic basis and are exaggerated during menstruation. Less than 20% of patients however report cyclical menstrual hematuria, which is considered a pathognomic sign for bladder endometriosis [97–99]. Bladder detrusor endometriosis symptoms may cause symptoms similar to painful bladder syndrome; therefore, diagnosis of bladder endometriosis should be considered in patients with recurrent dysuria and suprapubic pain [100]. Clinical symptoms of ureteral endometriosis are often silent [76, 101, 102]. Since the extrinsic form of the disease is more common resulting from endometriosis affecting the rectovaginal septum or uterosacral ligaments and surrounding tissues, patients present with dyspareunia, dysmenorrhea, and pelvic pain [103]. Abdominal pain is the predominant symptom, occurring in 45% of symptomatic patients [93, 104–106]. Symptoms are often cyclical when the ureter is involved, and cyclic microscopic hematuria is a hallmark of intrinsic ureteral disease [95, 107, 108]. There is a limited correlation between severity of symptoms and the degree of obstruction of the ureter. High degree of obstruction may proceed for a long time without symptoms, leading to deterioration of renal function [76]. Unfortunately, ureteral endometriosis is often asymptomatic leading to silent obstructive uropathy and renal failure [109].” (Charatsi et al., 2018)
• Thoracic (Diaphragm and Lung):
  • “…many patients being asymptomatic. Symptomatic patients often experience a constellation of temporal symptoms and radiologic findings with menstruation, including catamenial pneumothorax (80%), catamenial hemothorax (14%), catamenial hemoptysis (5%), and, rarely, pulmonary nodules.However, symptoms have been reported before menstruation, during the periovulatory period, and following intercourse.Symptoms of thoracic endometriosis are largely related to the anatomic location of the lesions. Pleural TES typically presents with symptoms of catamenial pneumothorax and chest or shoulder pain. Catamenial pneumothorax is defined as recurrent pneumothorax occurring within 72 h of the onset of menstruation. The symptoms experienced by patients are comparable to those of spontaneous pneumothorax and include pleuritic chest pain, cough, and shortness of breath. Furthermore, diaphragmatic irritation may produce referred pain to the periscapular region or radiation to the neck (most often right-sided). The right hemithorax is involved in up to 92% of cases, with 5% of cases involving the left hemithorax and 3% experiencing bilateral involvement. Catamenial hemothorax is a less common manifestation of pleural TES. Similar to catamenial pneumothorax, it presents with nonspecific symptoms of cough, shortness of breath, and pleuritic chest pain. It is predominantly right-sided, although rare cases of left-sided hemothorax have been reported.Less common bronchopulmonary TES presents as mild to moderate catamenial hemoptysis or as rare lung nodules identified on imaging. Massive, life-threatening hemoptysis is rare. Pulmonary nodules can be an incidental finding at the time of imaging or can occur in symptomatic patients. They can vary in size from 0.5 to 3 cm. Outside of the well-established clinical manifestations of TES, cases of isolated diaphragmatic endometriosis are typically asymptomatic but can result in irritation of the phrenic nerve. This can produce a syndrome of only catamenial pain, presenting as cyclic neck, shoulder, right upper quadrant, or epigastric pain.^” (Nezhat et al., 2019)

(catamenial refers to menstruation; pneumothorax is air leaking into the space between the lung lining; hemothorax is blood leaking into the space between the lung lining; hemoptysis is coughing up blood)

• Sciatic: pain in the buttock or hip area; pain, numbness, and/or weakness going down the leg; symptoms may initially occur with ovulation or menses (Sarr  et al., 2018)
• Scar: “Symptoms at presentation included the presence of a palpable mass at the level of the scar (78.57%), non-cyclic and cyclic abdominal pain (50%, 42.85% respectively), bleeding form mass (7.14%) and swelling of the affected area (7.14%).” (Malutan et al., 2017)

This qualitative study describes symptoms as experienced by individuals with endometriosis:

• Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of endometriosis on women’s lives: a qualitative study. BMC women’s health, 14(1), 123. Retrieved from https://link.springer.com/article/10.1186/1472-6874-14-123

“All women had suffered severe and progressive pain during menstrual and non-menstrual phases in different areas such as the lower abdomen, bowel, bladder, lower back and legs that significantly affected their lives. Other symptoms were fatigue, tiredness, bloating, bladder urgency, bowel symptoms (diarrhoea), bladder symptoms and sleep disturbances due to pain….

“The women described the pain as ‘sharp’, ‘stabbing’, ‘horrendous’, ‘tearing’, ‘debilitating’ and ‘breath-catching’. Severe pain was accompanied by vomiting and nausea and was made worse by moving or going to the toilet. The frequency of pain differed between the women with some reporting pain every day, some lasting for three weeks out of each menstrual cycle, and another for one year…

“Most of the women complained of dyspareunia during and/or after sex….

“Heavy and/or irregular bleeding was another symptom experienced but in some women, it was a side effect of endometriosis treatment. Bleeding when exercising and after sex were experienced by only a few women. Women and their partners were particularly worried when bleeding occurred after sex….

“Most women reported that endometriosis had significant impacts as they lived through it every day of their lives…. The physical impact was associated with symptoms, treatment side-effects and changes in physical appearance. Pain in particular was reported to limit their normal daily physical activity like, walking and exercise. Women who had small children mentioned that they were not able to care for them as they would like…Fatigue and limited energy were also among reported physical impacts of endometriosis. Although infertility was primarily a physical impact of endometriosis, it had a negative impact on the psychological health, relationship, and financial status of the women….

“Most women reported a reduction in social activity, and opted to stay home, and missed events because of severe symptoms especially pain, bleeding and fatigue. They resorted to using up their annual leave after exhausting their sick leave because of their disease. Some women also decreased their sport or leisure activities and some gave up their routine sport including water ski, horse-riding, swimming and snow skiing….”

References

Charatsi, D., Koukoura, O., Ntavela, I. G., Chintziou, F., Gkorila, G., Tsagkoulis, M., … & Daponte, A. (2018). Gastrointestinal and urinary tract endometriosis: a review on the commonest locations of extrapelvic endometriosis. Advances in medicine, 2018. Retrieved from https://www.hindawi.com/journals/amed/2018/3461209/

Malutan, A. M., Simon, I., Ciortea, R., Mocan-Hognogi, R. F., Dudea, M., & Mihu, D. (2017). Surgical scar endometriosis: a series of 14 patients and brief review of literature. Clujul Medical, 90(4), 411. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5683831/

Medical News Today. (2018). Can endometriosis cause bladder pain?. Retrieved from https://www.medicalnewstoday.com/articles/321439

Nezhat, C., Lindheim, S. R., Backhus, L., Vu, M., Vang, N., Nezhat, A., & Nezhat, C. (2019). Thoracic endometriosis syndrome: a review of diagnosis and management. JSLS: Journal of the Society of Laparoendoscopic Surgeons, 23(3). Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6684338/

Saar, T. D., Pacquée, S., Conrad, D. H., Sarofim, M., De Rosnay, P., Rosen, D., … & Chou, D. (2018). Endometriosis involving the sciatic nerve: a case report of isolated endometriosis of the sciatic nerve and review of the literature. Gynecology and minimally invasive therapy, 7(2), 81. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6113996/

4 years ago Endometriosis , Endometriosis Education

Red Flags: Myths and Misinformation

There are several red flags of perpetual myths/misinformation to watch for when evaluating information about endometriosis. Here are a few to be aware of:

1. “Hysterectomy is the definitive treatment for endometriosis.” Or variations of this theme: “Removing your uterus and/or ovaries will cure you”. Many people with endometriosis also experience problems with their uterus or ovaries (such as adenomyosis, fibroids, and other conditions that can contribute to chronic pelvic pain) that could benefit from a hysterectomy. However, using a hysterectomy to treat endometriosis alone may still leave you susceptible to continued symptoms and other problems from remaining lesions [one example: hydronephrosis from endometriosis left around ureters (Bawin, Troisfontaines, & Nisolle, 2013)].

• “Persistent or recurrent endometriosis after a total abdominal hysterectomy and bilateral salpingo-oophorectomy (TAH BSO) has been reported by several investigators.” (Hasty & Murphy, 1995)
• “According to literature, there are no randomized controlled trials for hysterectomy as the treatment for endometriosis.” (Bellelis, 2019)
• “Endometriosis which is not removed at the time of hysterectomy and bilateral salpingo‐oophorectomy may represent after a variable time interval with many or all of the symptoms which prompted the original surgery. This tissue can be highly active and responsive to exogenous hormonal stimulation. In the presence of troublesome symptoms, excision of residual endometriosis may be effective and should be considered.” (Clayton et al., 1999)
• “A high recurrence rate of 62% is reported in advanced stages of endometriosis in which the ovaries were conserved. Ovarian conservation carries a 6 fold risk of recurrent pain and 8 folds risk of reoperation. The decision has to be weighed taking into consideration the patient’s age and the impact of early menopause on her life style. The recurrence of endometriosis symptoms and pelvic pain are directly correlated to the surgical precision and removal of peritoneal and deeply infiltrated disease. Surgical effort should always aim to eradicate the endometriotic lesions completely to keep the risk of recurrence as low as possible.” (Rizk et al., 2014)
• “We found that among women undergoing hysterectomy, endometriosis was associated with a higher degree of prescription of analgesics. In the endometriosis group the prescription of analgesic, psychoactive and neuroactive drugs did not decrease significantly after surgery. In fact, the prescription of psychoactive and neuroactive drugs increased.” (Brunes et al., 2020)
• “Studies have showed that the growth and progression of endometriosis continue even in ovariectomized animals.” (Khan et al., 2013)
• Read more here: “Endometriosis persisting after hysterectomy and bilateral salpingo-oophorectomy: Removing the disease, not organs, is key to long-term relief”: http://endopaedia.info/treatment21.html

2. “All of your endo will die off in menopause.” Whether natural, surgically induced, or medically induced, there are cases of endometriosis continuing after menopause. Endometriosis lesions are capable of producing their own estrogen (Huhtinen, Ståhle, Perheentupa, & Poutanen, 2012). Another spin off is that “you are too old to have endometriosis”. Inceboz (2015) reports cases of endometriosis in the 8^th and 9^th decade of life. While some people’s symptoms do improve, it is not a sure thing.

• “As an estrogen-dependent disease, endometriosis was thought to become less active or regress with the onset of the menopause. However, based on some new data, we are discovering that this pathology can emerge or reappear at this period of life.” (Marie-Scemama, Even, De La Joliniere, & Ayoubi, 2019)
• “Endometriotic lesions remained biologically active, with proliferative activity and preserved hormonal responsiveness, even in the lower estrogenic environment in the postmenopause.” (Inceboz, 2015)
• “True prevalence of postmenopausal endometriosis is unknown. There have been some reports in the literature on the prevalence of endometriosis in postmenopausal women [5–8]. According to these studies, the prevalence of postmenopausal endometriosis is 2–5%…. Interestingly, nine of the cases were at the upper extreme of the age groups (eight were in 80–85 years and a case in 90–95 years).” (Inceboz, 2015)
• “Occurrence or progression of postmenopausal endometriosis lesions could be related to extra-ovarian production of estrogen by endometriosis lesions and adipose tissue, which becomes the major estrogen-producing tissue after menopause. Postmenopausal women with symptomatic endometriosis should be managed surgically…” (Streuli, Gaitzsch, Wenger, & Petignat, 2017)

3. “Getting pregnant will help.” However, endometriosis can cause infertility…..

• “Although gynaecologists often advise women that pregnancy has a beneficial effect on endometriosis, few studies confirm this association. Owing to the paucity and limited quality of the data, we can conclude that the behaviour of endometriotic lesions during pregnancy seems to be variable, ranging from complete disappearance to increased growth. Despite some of the early authors questioning a positive effect (McArthur and Ulfelder, 1965; Schenken et al., 1987), the idea to recommend pregnancy as part of the treatment strategy for endometriosis persists to this day (Rubegni et al., 2003; Coccia et al., 2012; Benaglia et al., 2013). The few favourable early observations and very limited options to treat endometriosis seem to have generated the myth of a beneficial effect of pregnancy and initiation of the so-called ‘pseudopregnancy’ therapy. Endometriosis is associated with infertility, and a lower prevalence of endometriosis in pregnant than in non-pregnant women may have led clinicians and scientists to the view that pregnancy has a positive effect against the disease.” (Leeners, Damaso, Ochsenbein-Kölble, & Farquhar, 2018)

4. “Mild endometriosis won’t affect fertility.” So-called “mild” or “minimal” endometriosis can affect the ability to conceive (Carvalho et al., 2012). Also, “mild” or “minimal” endometriosis can still produce significant symptoms (see Pain with Minimal Endometriosis).

• “The purpose of this systematic review is to present studies regarding the association between pregnancy rates and the presence of early stages of endometriosis. Studies regarding infertility, minimal (stage I, American Society of Reproductive Medicine [ASRM]) and mild (stage II, ASRM) endometriosis were identified…Earlier stages of endometriosis play a critical role in infertility, and most likely negatively impact pregnancy outcomes.” (Carvalho, Below, Abrão, & Agarwal, 2012)

5. “Hormonal suppressants will clean up the rest of the endometriosis.” Hormonal medications may be useful for other problems but cannot be relied upon to “clean up” or prevent recurrence of endometriosis. Surgeons who perform endometriosis surgery exclusively (excision) versus a general gynecological/obstetric practice have more chance to develop skill in being able to identify and being able to remove ALL endometriosis lesions (Khazali, 2020) (see Why Excision is Recommended).

• “Endometriotic stromal cells resist the antiproliferative effect of GnRH agonists and antagonists.” (Taniguchi et al., 2013)
• “This case demonstrates the obvious progression of deep rectal endometriosis despite 4 years of continuous hormonal therapy.” (Millochau et al., 2016)
• “Few studies of medical therapies for endometriosis report outcomes that are relevant to patients, and many women gain only limited or intermittent benefit from treatment.” (Becker et al., 2017)
• “There is currently no evidence to support any treatment being recommended to prevent the recurrence of endometriosis following conservative surgery.” (Sanghera et al., 2016)
• “A systematic review found that post-surgical hormonal treatment of endometriosis compared with surgery alone has no benefit for the outcomes of pain or pregnancy rates, but a significant improvement in disease recurrence in terms of decrease in rAFS score (mean = −2.30; 95% CI = −4.02 to −0.58) (Yap et al., 2004). Overall, however, it found that there is insufficient evidence to conclude that hormonal suppression in association with surgery for endometriosis is associated with a significant benefit with regard to any of the outcomes identified….Moreover, even if post-operation medication proves to be effective in reducing recurrence risk, it is questionable that ‘all’ patients would require such medication in order to reduce the risk of recurrence.” (Guo, 2009)
• “Many studies have investigated factors determining the recurrence of endometrioma and pain after surgery [16, 19, 20]…. Regardless of the mechanism, the present and previous studies suggest that postoperative medical treatment is known to delay but not completely prevent recurrence…. In our study, we also failed to observe a benefit for postoperative medication in preventing endometrioma and/or endometriosis-related pain recurrence.” (Li et al., 2019)
• “Furthermore, all currently approved drugs are suppressive and not curative. For example, creating a hormonal balance in patients by taking oral contraceptives, such as progestins and gonadotropin‐releasing hormone agonists, may only relieve the associated inflammatory status and pain symptoms.” (Che et al., 2015)

6. “If I respond to hormonal therapy then that means I have endometriosis.” Response to hormonal treatment, whether positive or negative, does NOT diagnose endometriosis or exclude it.

• “Relief of chronic pelvic pain symptoms, or lack of response, with preoperative hormonal therapy is not an accurate predictor of presence or absence of histologically confirmed endometriosis at laparoscopy.” (Jenkins, Liu, & White, 2008)
• “The definitive diagnosis of endometriosis can only be made by histopathology showing endometrial glands and stroma with varying degree of inflammation and fibrosis.” (Rafique & Decherney, 2017)

7. “My scans didn’t show anything so I was told I didn’t have endometriosis.” Transvaginal ultrasounds and magnetic resonance imaging are becoming more sensitive in the hands of those with experience and can rule in instances of endometriosis (especially deep infiltrating endometriosis and endometriomas). However, it cannot rule out endometriosis. (See But All Your Tests Are Negative)

• “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
• “Ultrasonography and magnetic resonance imaging can be used to diagnose ovarian endometriotic cysts and deep infiltrating endometriosis; but their performance is poor in the diagnosis of initial stages of endometriosis.” (Ferrero, 2019)

8. “None of my tests showed I had endometriosis.” Other tests, in addition to scans, cannot adequately rule out endometriosis with consistency or certainty.

• “Currently, there are no non‐invasive tests available in clinical practice to accurately diagnose endometriosis…. Laparoscopy remains the gold standard for the diagnosis of endometriosis and using any non‐invasive tests should only be undertaken in a research setting.” (Nisenblat et al., 2016)
• “CA‐125 and other serum markers (such as CA 19‐9, serum protein PP14, interleukins, and angiogenetic factors) have been measured in women with endometriosis but they are not reliable for the diagnosis of the disease.” (Ferrero, 2019)
• “The majority of studies focused on a panel of biomarkers, rather than a single biomarker and were unable to identify a single biomolecule or a panel of biomarkers with sufficient specificity and sensitivity in endometriosis. Conclusion: Noninvasive biomarkers, proteomics, genomics, and miRNA microarray may aid the diagnosis, but further research on larger datasets along with a better understanding of the pathophysiologic mechanisms are needed.” (Anastasiu et al., 2020)

9. “I was told I had IBS.”

• “Endometriosis can be commonly misdiagnosed as IBS [22] due to overlap in common symptoms and perhaps mechanisms of disease progression involving aberrant activation of inflammatory cascades.” (Torres-Reverón, Rivera-Lopez, Flores, & Appleyard, 2018)

10. “You are too young to have endometriosis.” Or “you are too young to have adenomyosis or DIE.” In those adolescents with chronic pelvic pain, endometriosis is a common discovery. Deep infiltrating endometriosis (DIE) can be found in teens.

• “Endometriosis is a common finding in adolescents who have a history of chronic pelvic pain or dysmenorrhoea resistant to medical treatment, however the exact prevalence is unknown. Both early/superficial and advanced forms of endometriosis are found in adolescents, including ovarian endometriomas and deep endometriotic lesions. Whilst spontaneous resolution is possible, recent reports suggest that adolescent endometriosis can be a progressive condition, at least in a significant proportion of cases. It is also claimed that deep endometriosis has its roots in adolescence.” (Sarıdoğan, 2017)
• “The majority of adolescent girls with chronic pelvic pain not responding to conventional medical therapy have endometriosis (up to 80%). Laparoscopy with biopsy is the only way to diagnose endometriosis in the adolescent population, and depends on recognition of atypical manifestations of the disease.” (Yeung Jr, Gupta, & Gieg, 2017)
• “Adolescent endometriosis is not a rare condition.” (Audebert et al., 2015)
• “An increasing body of literature suggests that advanced-stage endometriosis (revised scoring system of the American Society for Reproductive Medicine Stage III or IV) and deeply invasive endometriosis are relatively common in adolescents.” (Dowlut-McElroy & Strickland, 2017)
• “In all, 648 of 1011 (64%) adolescents undergoing laparoscopy were found to have endometriosis. The prevalence ranged from 25% to 100%, with a mean prevalence of 64%. Thirteen studies including 381 participants categorized disease severity using the revised American Society of Reproductive Medicine classification. Among these, 53% of participants (201/381) had stage I, 28% (105/381) had stage II, 20% (76/381) had stage III, and 13% (49/381) had stage IV disease. Conclusions: The prevalence of endometriosis among adolescents with pelvic pain symptoms is high. Endometriosis is treatable, and prompt recognition will help to ensure that adolescents are signposted earlier to appropriate specialists. The management of adolescents with suspected endometriosis should be consistent with best practice guidance. Despite recommendations to increase the awareness and knowledge of endometriosis in adolescence, minimal research has followed.” (Hirsch et al., 2020)

11. “My endo keeps coming back so there’s nothing I can do.” It can be difficult to ascertain if endometriosis truly reappeared or was all of it not removed previously (See Is There Microscopic or Occult Endometriosis). With repetitive surgeries or with endometriosis in certain locations (such as ureters, bowel, diaphragm, etc.), seeking someone who exclusively does surgery for endometriosis and its related conditions can be beneficial (Khazali, 2020). Often a team approach, utilizing other specialties as dictated by the individual’s case, is valuable (Khazali, 2020). (See Why Excision is Recommended) Recurrence can happen, more often in ovarian endometriosis, stage III and IV, and in those who were younger (Selçuk & Bozdağ, 2013). When looking at recurrence rates, it ranges from 6% to 67% (Selçuk & Bozdağ, 2013)! This wide range is due to many factors when evaluating studies- most studies do not differentiate the type of surgery, the type of surgeon (specialty center versus general gynecological practice), or the criteria for recurrence (was it reemergence of symptoms or repeat surgery) (Selçuk & Bozdağ, 2013). There are many related conditions that appear with endometriosis that can cause similar symptoms that should also be addressed (See Related Conditions).

• “A multidisciplinary team approach (eg, gynecologic endoscopist, colorectal surgeon, urologist) can reduce risk and facilitate effective treatment.¹⁹ Likewise, advanced surgical skills and anatomical knowledge are required for deep resection and should be performed primarily in tertiary referral centers. Careful preoperative planning, informed consent, and meticulous adherence to “best practice” technique is requisite to reduce morbidity and ensure effective management of potential complications.⁹⁰Although excisional biopsy and resection offers a higher success rate in treating the disease, surgical excision also requires a higher level of surgical skill. As a result, many patients receive incomplete treatment, which in turn may lead to persistent symptoms and recurrent disease. It should be noted that many women who have undergone repeated surgeries and had a hysterectomy still suffer.⁸⁶ The need to improve surgical approach and/or engage in timely referrals is unquestionable. Surgery to debulk and excise endometriosis may be “more difficult than for cancer”. Complete removal of implants may be difficult due to variation in appearance and visibility. True surgical resection and treatment poses formidable challenges, even the hands of experienced clinicians. In particular, deep disease is often difficult to treat due to close proximity of and common infiltration in and around bowel, ureters, and uterine artery.¹⁸ Potential adenomyosis should also be included in the preoperative workup, as it can influence postoperative improvement patterns of pain and symptoms associated with endometriosis.” (Fishcer et al., 2013)
• “All of the studies were conducted by expert laparoscopic surgeons, whose results are unlikely to be reproduced by the generalist surgeon…. Based on the studies performed to date, it is the author’s opinion that laparoscopic excision of endometriosis, when technically feasible, should be the standard of care. First, whereas visual diagnosis of endometriosis is correct in only 57% to 72% of cases, excisional surgery yields specimens for histologic confirmation—and identifies endometriosis in 25% of “atypical” pelvic lesions as well.¹⁸ The availability of such specimens would prevent unnecessary treatment and ensure more reproducible research findings. Excision should also reduce the incidence of persistent disease secondary to inadequate “tip of the iceberg” destruction, removing both invasive and microscopic endometriosis to provide the best possible symptom relief.” (Jenkins, 2009)
• “Laparoscopic identification of superficial endometriosis implants represents a challenge for the gynecologic surgeon. Endometriosis lesions may present in a wide spectrum of appearance according to a “lifecycle” of the implants. The lesions can be flat or vesicular. They can have any combination of color typically red, back/brown and white. Active “red” lesions, large endometriomas, deep infiltrating nodules, and typical “powder-burn” lesions are easier to identify than “white” old fibrotic lesions. The endometriotic implants are hypervascular. The diagnostic accuracy at laparoscopy is also affected by the experience of the surgeon and the laparoscopic equipment [16].” (Jose, Fausto, & Antonio, 2018)

12. “It’s all in your head.” When no visible cause is identified or usual treatments fail, the blame often gets shifted to the individual- that they are exaggerating or are not strong enough to deal with it or that they should be able to just live it. Sadly, one study (Rowe & Quinlivan, 2020) found that often a women’s fertility rather than quality of life was the driver for getting further care.

• “Women’s symptoms are frequently trivialized or disbelieved, consequently attributing pathology to the woman rather than the disease, which is deeply distressing [11]. These responses are underpinned by essentialist notions that pain is just part of being a woman. Lack of legitimation results in victim blaming, reinforces gendered stereotypes about feminine weakness, intensifies women’s distress and averts prompt action [10]. Similar essentialist ideas underlie observations that framing endometriosis as a fertility problem is more likely to result in health care intervention than when it is framed as symptom management. In one qualitative study, women described fertility as the entry point for discussion about endometriosis, despite having sought health care for symptoms over many years [12].” (Rowe & Quinlivan, 2020)
• “Endometriosis impairs the quality of life due to chronic and severe acyclic pelvic pain with associated dysmenorrhea, dyspareunia, gastrointestinal problems, fatigue and headaches….women with endometriosis are often surrounded by taboos, myths, scourge of subfertility, pain of disease and missed diagnosis and treatment [22]. Delays in the diagnosis and initiation of treatment for the disease in fact occur due to these counterproductive factors operative both at the individual patient level and at the medical level resulting in frustration and loss of valuable time in the prime phase of life of the patient….Delays also occur at the medical level due to the delay in referral from primary to secondary care, pain normalized by clinicians, intermittent hormonal suppression of symptoms, use of non-discriminating investigations and insufficiency in awareness and lack of constructive support among a subset of healthcare providers [23,24,25,37,38]. In this connection, it is noteworthy that delay in diagnosis is longer for women reporting with pelvic pain compared with those reporting with infertility, which is suggestive of the fact that there is a higher level of reluctance surrounding endometriosis-associated pain symptoms….” (Ghosh et al., 2020)
• “Women had to ‘battle’ for an accurate diagnosis, and had limited faith in health professionals…. Conclusions: Implications for health professionals are discussed, including the need for earlier diagnosis and taking women’s symptoms more seriously at referral…” (Grogan, Turley, & Cole, 2018)
• “Despite its high prevalence and cost, endometriosis remains underfunded and underresearched, greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options. Due in part to the societal normalization of women’s pain and stigma around menstrual issues…” (As-Sanie et al., 2019)

References: https://icarebetter.com/red-flags/

4 years ago Endometriosis , Endometriosis Education

Labwork and Blood Tests for Endometriosis

While several companies are working to develop one, there is no single blood test that can definitively diagnose endometriosis yet. It takes a long time to determine if a test has the reliability “so that no patients with actual endometriosis would be missed and no women without endometriosis would be selected for potentially unnecessary additional procedures” (Signorile & Baldi, 2018). Fassbender et al. (2015) notes that such tests might help receive a diagnosis more quickly so that “no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis associated pain and/or infertility”.

In our Diagnosis section, you can read more about some of the types of blood tests that are under investigation. Other blood tests can be used to rule out other problems and can give an indication to investigate further but are not specific to endometriosis (such as CRP and CA-125). You can also find information in the Diagnosis section about the use of ultrasounds and magnetic resonance imaging (MRI’s) in endometriosis.

“The gold standard for the diagnosis of peritoneal endometriosis has been visual inspection by laparoscopy followed by histological confirmation [7].However, the invasive nature of surgery, coupled with the lack of a laboratory biomarker for the disease, results in a mean latency of 7–11 years from onset of symptoms to definitive diagnosis. Unfortunately, the delay in diagnosis may have significant consequences in terms of disease progression. The discovery of a sufficiently sensitive and specific biomarker for the nonsurgical detection of endometriosis promises earlier diagnosis and prevention of deleterious sequelae and represents a clear research priority….The most important goal of the test is that no women with endometriosis or other significant pelvic pathology are missed who might benefit from surgery for endometriosis-associated pain and/or infertility [17–19].”

(Fassbender et al., 2015, para. 1, 5)

4 years ago Endometriosis , Endometriosis Education

Before and after surgery- tips on preparing

We get a lot of questions about what to expect before and after surgery. On our Resources page, we have added a section on Preparing for Surgery- Pre and Post-Operative.

In the Before Surgery section, you’ll find links to topics such as:

• Choosing Your Surgeon
• Your First Consultation
• Things to Pack

In the After Surgery section, you’ll find topics such as:

• What to Expect in the Weeks After Skilled Excision Surgery
• Managing Expectations Pre- and Post- Op
• Pelvic Therapy Resources

Another often asked question is whether your endo is “coming back” or persisting after surgery. This is a complicated question, but this might help:

• “Pain persisting after complete excision surgery: Persistent endometriosis or something else?”

Check out the Resources page for more information!

4 years ago Endometriosis , Endometriosis Education

Migraines- overlap of common conditions or close tie to endo?

Both migraines and endometriosis affect a high percentage of the population. Endometriosis affects about 10-15% of the population, while migraines affect >12% of the population (Parasar, Ozcan, & Terry, 2017; Yeh, Blizzard, & Taylor, 2018). So is any association between the two just an overlap of two common conditions? Or is there something that ties the two together?

According to several studies, there is a higher prevalence of migraines in people with endometriosis. One study noted that “the risk of endometriosis was significantly higher in migrainous women” and that “women of reproductive age who suffer from migraine should be screened for endometriosis criteria” (Maitrot-Mantelet et al., 2020). Another study noted a “linear relationship exists between migraine pain severity and the odds of endometriosis” (Miller et al., 2018). One study also attempted to account for the effects of hormones on migraines and endometriosis and found evidence of a “co-morbid relationship between migraine and endometriosis, even after adjusting for the possible effects of female hormone therapies on migraine attacks” (Yang et al., 2012).

Curious about other related conditions? Check out Related Conditions

4 years ago Endometriosis , Endometriosis Education

Bowel Endometriosis Surgical Management

While many individuals have bowel/gastrointestinal symptoms with endometriosis (like diarrhea, constipation, bloating, and pain with defecation), most will not have endometriosis directly on the bowel itself. (See more on bowel endometriosis here). For those that do, there are different approaches to its surgical management.

The different approaches might include shaving, excision, and resection. Studies reveal the advantages and disadvantages of the different techniques- you can read some of those studies here. Most experts express using a team approach (such as involving a colorectal surgeon), using imaging to help guide planning before surgery (with preference for MRI), and decisions based on each individual. Those with more advanced skill in working with bowel endometriosis cite low complication rates. (You can find more on the experts’ opinions in Nancy’s Nook Facebook Group in Unit 2: Surgery).

4 years ago Endometriosis , Endometriosis Education

Genetics of endometriosis: what are the risks?

Is there a genetic component to endometriosis? According to various studies, there is. (You can find links to several of these studies, including the ones below, in Origin Theories of Endometriosis.) This past week someone asked if there is an increased risk if there is a family history on your father’s side. According to this study, there is a “definite kinship factor with maternal and paternal inheritance contributing”.

Another often asked question is how strong is the risk associated within families. According to one study, there is an estimated 5.2 increased risk between sisters and a 1.6 increased risk in cousins. The study also stated that among twins, there was a 51% increased risk. Another study indicated that there is a “sixfold increased risk for first-degree relatives of women with laparoscopically confirmed diagnosis of endometriosis”. Another study indicates a “first-degree relatives of affected women are 5 to 7 times more likely to have surgically confirmed disease”. Yet another study indicated that there is a stronger association with genetic risk for “severe” disease versus “minimal” or “moderate”. (Remember that disease severity in staging is based on the anatomy affected and fertility not necessarily the severity of symptoms- see more about that here.)

While this doesn’t mean a relative will definitely have endometriosis just because you do, it does indicate an increased risk, especially for first degree relatives. There are several genes noted to be involved in endometriosis and several mechanisms on how those genes are expressed in endometriosis. While these studies are paving the way to understanding endometriosis, there is still much to be learned.

4 years ago Endometriosis , Endometriosis Education

What does endometriosis look like? And tips on coping with endometriosis

When looking at endometriosis, it is important to know what it looks like, where it is found, and how it functions. This can affect treatment by knowing how medications may or may not affect it and how surgeons can effectively remove it (by knowing its appearance and where to look for it). This week we added the Many Appearances of Endo and Histology of Endometriosis (what it looks like under a microscope) in order to help you understand what endometriosis looks like. More information about the basics of endometriosis can be found in What Is Endometriosis?.

One question that often arises in Nancy’s Nook Facebook group is how to cope with endometriosis while seeking effective treatment. Who better to ask than those who have endometriosis? Several members of the group noted several things that helped them to cope. To date, the most utilized were heat, dietary changes, and distraction. Find out what additional things helped others with endometriosis in Coping with Endometriosis.

4 years ago Endometriosis , Endometriosis Education

Creating an action plan and Staging, Minimal Disease, and DIE

How do you create an action plan for your endometriosis? Where do you start? Start by understanding your disease and knowing your options. This website was created to help you navigate learning about endometriosis. In Endometriosis Action Plan, we show you how to utilize the website and have a directory to the topics currently covered (more is being added so continue to check the website!).

One item added this week to “What is endometriosis” is information about staging, “minimal” endometriosis, and deep infiltrating endometriosis (DIE). Terms about what stage your endometriosis is and what that means can be confusing. Ever been told you have “minimal” disease but think “my symptoms aren’t minimal!”? What does DIE (deep infiltrating endometriosis) really mean? Find out here.

4 years ago Endometriosis , Endometriosis Education

Endometriosis Action Plan

How to use this website

This website is designed to help you navigate learning all you can about the latest research on endometriosis, so that you can make informed decisions about your care. It takes some time, but it is worth doing the work!

1. Forget all you’ve been told about endometriosis and look at it with fresh eyes. Many outdated myths about endometriosis are still being perpetuated.
2. Start at the beginning and learn what endometriosis is.  Also, refer back as needed about more in depth information, such as how endometriosis behaves and how that can influence treatment options. Sometimes further questions remain and you might find more information in our Frequently Asked Questions. The search bar can be helpful as you explore.
3. Learn about symptoms. Some you may not have even correlated with endometriosis. Knowing why you have certain symptoms can help understand your disease, better understand treatment options, and be better able to cope with it.
4. Learn how other related conditions can mimic or overlap endometriosis symptoms. It’s not always just endometriosis causing problems.
5. Learn about how endometriosis is diagnosed (hint- surgery with biopsy confirmation) and how other diagnostic tests can help guide care.
6. Learn about your treatment options and latest research to help to make informed choices.
7. Research resources that can help you as you learn about endometriosis and navigate your care plan.
8. Feel connected with others and know you are not alone on this endometriosis journey.
9. Use this information when discussing options with your health care provider. You are your own best advocate!

Looking for something in particular? Using the search bar on the website will be your best option. Below are listed topics as of August 2020:

Nancy’s Nook Website Topics

1. What Is Endometriosis?
   1. Overview
   2. Origins
      • Origin Theories of Endometriosis
      • More Evidence Against Reflux Theory of Origin
      • Endometriosis Overview
   3. In depth on endo
      • Leptin and its role in endometriosis
      • Role of Estrogen Receptor-β in Endometriosis
      • Progesterone Resistance in Endometriosis
      • Weird places endometriosis has been found
      • Random Endometriosis Findings
      • Risks of Heart Disease, Perspective on Research
2. Symptoms
   1. Overview
   2. Additional symptoms
      • Additional Symptoms and Symptoms Based on Endometriosis Locations
   3. Pain
      • Introduction: Pain
   4. Pain with Endometriosis and what influences pain levels
      • Pain Associated with Minimal Endometriosis
      • Location of endometriosis lesions and where pain may be felt
      • Pelvic Floor Dysfunction links
      • Pain with Penetration
      • Brokengirl: The secret shame of chronic pelvic pain and the unseen consequences of our current care paradigm for endometriosis care
   5. Sexual Functioning
      • Pain with Penetration
      • Post coital bleeding
   6. Bowel/gastrointestinal
      • Bowel/GI endometriosis
   7. Fatigue and Inflammation
      • Inflammation with endometriosis
      • Inflammatory markers and endometriosis (CRP and CA-125)
      • Fatigue in Endometriosis
      • Study on Prostaglandin E2 and bacterial growth in endometriosis with response from Dr.Redwine
   8. Infertility
      • Fertility Issues
      • Infertility links
   9. Thoracic (diaphragm) 
      • Thoracic Endometriosis
      • Comments on Thoracic Endometriosis
   10. Ovaries
       • Ovaries and Endometriomas
   11. Urinary (bladder, ureters, and kidneys)
       • Urinary System (Bladder, Ureters, and Kidney)
   12. Other
       • Endometriosis Systemic Effects
       • Immune System
       • Adhesion Related Information – Articles, Links, and Resources
       • Endometriosis and Exercise
3. Diagnosis
   1. Overview
   2. Surgery
   3.  Ultrasound Use with Endometriosis
   4.  Magnetic Resonance Imaging (MRI’s) and endometriosis
   5.  Clinical diagnosis of endometriosis: a call to action- from AJOG
4. Treatment
   1. Overview
   2. Treatment
      • How is endometriosis treated?
      • The Standard of Care is Not Sufficient!
   3. Surgery
      • Why Surgery
      • Why excision is recommended
      • Endometriosis Appearance and Location: Impact on Surgical Success
      • The Cost Effectiveness of Surgical Excision of Endometriosis: an unpublished study
      • Should laser vaporization and electrocoagulation of endometriosis be banned
      • Robotic Surgery
      • Adhesion prevention
      • Pelvic Adhesions
      • What to Expect in the Weeks After Skilled Excision Surgery
      • Managing expectations pre-op and post op
   4. Medications
      • Pain Medications
      • Hormonal Medications
      • A Quick Guide to Pain Control
      • Medication to Prevent Recurrence
      • Effects of long term low estrogen states
   5. Physical Therapy
      • “Everyone should do Kegels” and other pelvic floor myths
      • Physical Therapy Resources
   6. Other Therapies
      • Pain Management
      • Mental Health
      • Alternative and Complementary Therapies
      • Diet and Nutrition
5. Related Conditions
   1. Overview
   2. Adenomyosis
   3.  Endometrial/Uterine Polyps
   4.  Interstitial Cystitis/Bladder Pain Syndrome
   5.  Pelvic Floor Dysfunction
   6.  Fibroids
   7.  Polycystic Ovarian Syndrome (PCOS)
   8.  Pudendal Neuralgia & Vulvodynia
   9.  Pelvic Congestion Syndrome
   10.  Occult Hernia
6. Resources
   1. Overview
   2. Resources
      • Choosing your surgeon
      • Managing the relationship with your current doctor
      • Personal Medical History Template
      • Things to pack for the Hospital
      • Why Patients Have a Role to Play in Changing the Status Quo of Endometriosis
      • Endometriosis The Patient Perspective, AAGL presentation
      • Informed Choice Evidence Report: APPG Womens Health from March 2017
      • UK Resources
      • Australia Resources
   3. Links, Videos, and Podcasts
      • Articles and Website Links
      • Podcasts and Videos
   4. Insurance and Finances
      • Tips for Dealing with Insurance
      • Insurance: Tricare
      • Lack of Endometriosis Surgery Reimbursement in the US links
      • Endometriosis affects absenteeism and presenteeism
   5. Infertility
      • Infertility links
   6. Teens
      • Teens and Endometriosis
   7. Pregnancy
      • Pregnancy and Endometriosis
   8. LGBTQIA+
      • LGBTQIA+ Resources
      • Transgender and Endometriosis Studies
7. Frequently Asked Questions
   1. Overview
   2. Is there a link between heart disease and endometriosis?
   3.  What effects can long term low estrogen cause?
   4.  Can endometriosis persist after hysterectomy/ovary removal
   5.  Is There Microscopic or Occult Endometriosis
   6.  Is endometriosis an autoimmune disease? Any association with autoimmune?
   7.  Does endometriosis increase my risk of cancer?
8. Patient Stories
   1. Overview
   2. Barriers to Care
   3.  Endometriosis: A Husband’s Perspective
   4.  Endometriosis is so much worse than a bad period
   5.  Impact of endometriosis on women’s lives: a qualitative study
   6.  Parenting is Hard, Even Harder with Endometriosis

4 years ago Endometriosis , Endometriosis Education

Support Awareness and Have Fun!

Are you looking to get outside, socially distance, AND support endometriosis awareness? Several organizations have set up Virtual 5K’s that can be done anywhere!

Here are two that are coming up:

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August 29, 2020, Anytime, Any Place: Feeling separated from the endometriosis community, Dr. Andrea Vidali and Dr. Sallie Sarrel launched the Endo Summit Virtual 5K. Registrants can walk, run, amble, or saunter their 5K outside or inside to get their custom designed Instagram or Facebook filter medal. Endo Summit 5K masks are also available for purchase.

“We wanted everyone to know, that while treatment and care is on hold or looks different for many, to change life with endometriosis we must stay connected,” says Endometriosis Summit Co-Founder Sallie Sarrel. “Our goal is to raise awareness for endometriosis all over the world.”

To register for the Endo Summit Virtual 5K go to:  https://www.theendometriosissummit.com/virtual-5k.html

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October 3-12, 2020, Anytime, Any Place: Run to End Endo, normally a road race through Edmonton, moved online making the run accessible to all. Proceeds support The Endometriosis Network, Canada’s first registered charity dedicated to raising awareness of endometriosis and helping those it affects. 

The mission of TENC is to promote awareness while providing education, support and resources nationally, for people with endometriosis and those whose lives it touches. The Run to End Endo can be found on Facebook and Instagram @RuntoEndEndo.

To register for the Run to End Endo Virtual 5K go to: https://raceroster.com/events/2020/32531/run-to-end-endo-2020

4 years ago Endometriosis , Endometriosis Education

Endo in weird places, pelvic physical therapy, and FAQ answered

Endometriosis has been found in some strange places. One of the places it is very rarely found is the heart. We recently added to “Weird places endometriosis has been found” two surgical videos of endometriosis being removed from around the heart.

Pelvic physical therapy can be a useful tool in treating symptoms created by endometriosis. We added a few extra resources to understand what pelvic physical therapy entails and how it can help.

Someone recently asked a question about whether you could still get an endometrioma after a hysterectomy. You can find the answer in Frequently Asked Questions: Can endometriosis persist after hysterectomy/ovary removal

4 years ago Endometriosis , Endometriosis Education No comment

New in UK Resources, Inflammation with Endo, and Teens with Endo

In our UK Resources, someone shared with us when you can expect to hear about the surgical findings after you’ve had surgery.

In Inflammation with Endometriosis, we look at how mast cells can affect the inflammatory process in endometriosis.

In Teens and Endometriosis, we added a couple of studies:

• Audebert, A., Lecointre, L., Afors, K., Koch, A., Wattiez, A., & Akladios, C. (2015). Adolescent endometriosis: report of a series of 55 cases with a focus on clinical presentation and long-term issues. Journal of minimally invasive gynecology, 22(5), 834-840. Retrieved from https://pubmed.ncbi.nlm.nih.gov/25850071/ 

“Adolescent endometriosis is not a rare condition. In our study a familial history was reported in more than one-third of patients. Among those patients treated for DIE, there was a trend for higher rates of recurrences (symptoms or lesions) that required repeat laparoscopy. However, the impact on subsequent fertility appeared to have been limited.”

• Song, X. C., Yu, X., Luo, M., Yu, Q., & Zhu, L. (2020). Clinical characteristics and postoperative symptoms of adolescent endometriosis among 85 cases. Journal of Pediatric and Adolescent Gynecology. Retrieved from https://pubmed.ncbi.nlm.nih.gov/32619717/ 

“Pelvic pain was the main symptom in adolescent endometriosis and was greatly improved after surgery. It should also be noted that genital malformation may be an important factor in younger adolescent endometriosis.”

4 years ago Endometriosis , Endometriosis Education

Endometriosis: leaving disease behind and calling it something else

The move back to mental health issues and central sensitization issues is dangerous. It gives inadequately trained surgeons tools to abuse patients who still have active disease. Most of the time, the patients we refer on have been dismissed as neurotic, and or told it is cs and they still have improperly treated endometriosis. I know there are pelvic pain conditions that are caused by things other than endometriosis. But when we fail to adequately treat patients and then label them and put them into mental health treatment while ignoring the active disease, we are stepping backward 100 years into the hysterical woman era or even further into the times of ancient Greece.

When the esteemed Prof Shirley Pearce of the UK showed us that abnormal mental states clear with adequate treatment, I find using these “new approaches” of including mental health dx before adequately treating the patient to be misogynist, disrespectful to women, transgender and others. It becomes a tool to abuse patients even further, offering excuses to use drug therapy where skilled surgery is missing.  

Now, a large study in China has noted that central sensitization begins to clear in a few short months after pain is relieved with proper surgery. That crutch will soon go away, no, wait, misinformation takes on a life of its own and misleads the industry for decades. The drug companies take advantage of those surgeons who do not have advanced skills by marketing the drug for moderate to severe symptom relief. However, in their own literature, Dr. David Redwine noted that it was not as effective as claimed, but continues to be marketed as an effective tool. If physicians are not reading the fine print and actually asking patients how they are doing, this gets missed. This disease impacts interactions with family, with partners/spouses, with employers, with education efforts, and physicians should be inquiring about how patients are doing in these areas. These poor interactions are not mental health issues, they are PERITONEAL QUALITY PAIN issues, and deserve to be heard and addressed. If the physician does not treat other pelvic pain generators then referring on to pain managers is a compassionate thing to do, or to pelvic PT, or even consider that all endometriosis may not haveall been removed, or has recurred and needs to be addressed. Too often physicians insist on a course of medical suppression and never follow up how the patient is doing. When a group of physicians in Thunder Bay. Ont. thought they were curing endometriosis with triple dose Danazol, I asked the crowd why the doctors believed that? The answer was, “we don’t go back, because they do not believe us.”

Other times physicians will leave disease on the bladder or bowel as insignificant and “treat” it with medical menopause meds. Wrong on many levels as there is no medication that treats endometriosis and low estrogen states occurring thru suppression with drugs has lifelong impact, not immediately acknowledged. Small vessel heart disease, permanent bone loss, and cognitive issues have all been associated with low estrogen states cause by medical menopause (drug induced) or surgical castration. The reasons for such an approach need to be questioned as the drug companies now maintain a speakers bureau of physicians and these physicians are treating patients.  

Indeed, these concerns get pushed on down the patient’s life span and once they have occurred, you can’t go back. Those choosing to not excise disease, take the easy way out with suppressive drugs, creating a future of significant health issues for which they accept no current responsibility. Drugs have a role in gynecology, but they do not treat endometriosis and suggesting that they do, is misleading patients.