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.

1 year ago Endometriosis , Endometriosis Education No comment

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.

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

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 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

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

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 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 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

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 , 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 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 , 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 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 , 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

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 , 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

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 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

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

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

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

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

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

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

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).