What Causes Endometriosis?

Actionable Insights and Cause-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.   

As a backgrounder for the problem, 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 it 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 in the here and now.  

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 have to 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 a lot in print, 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 often contain higher levels of aromatase, an enzyme that produces estrogen and may be less responsive to progesterone 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 is indicative of 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 host 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, at the root, these symptoms and signs may still be very related and due to a common root cause. Too often, the 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 periods, 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 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 at all possible, this diagnosis and possibly therapeutic surgery should be done correctly the first time in order 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. In general, this certainly affects choosing the best treatment plan for any disease, and 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. 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 are able to 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, in order for endo to grow and cause problems it has to 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/ coelomic metaplasia: this theory suggests that peritoneal mesothelium (lining) could transform into endometrial-like tissue (also proposed about 100 years ago) 

2/ 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 

3/ benign metastasis, meaning that endometrial cells are transported by the lymphatic system beyond the uterus 

4/ 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 of the above have also been proposed. 

The truth, as almost always, is likely in between all of 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 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, there will never be a one-size-fits-all solution in all likelihood. 

However, what happens with progression, when it happens and why is 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 that is evidence-informed and that can be helpful.  

Genetics and Genomics

From epidemiologic, twin, single gene, and genome-wide association studies (GWAS) there is little doubt that your risk for developing endo is largely grounded in multiple genes (polygenic) and their polymorphisms (alterations of various magnitudes).  Further, genes can interact with each other, either amplifying or attenuating 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, introduced below.  

Read more: Is Endometriosis Genetic? Understanding the Genetic Links in Endometriosis.

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 interplay 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 on board 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. 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 be a mitogenic in some tissues (e.g. breast). Also, overall progesterone or progestins exert less of an effect on endometriosis than on eutopic endometrial tissue 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 by consuming seaweed, regular exercising and other lifestyle choices, like active xenoestrogen toxin avoidance.

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

Read more: Endometriosis And Menopause: Everything You Need To Know

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.   

But inflammation 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 actionable. Failing that, general anti-inflammatory strategies may also be beneficial, 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.

Read more: Endo-Fighting Microbiome Optimization: Research-based Tips

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.

Read more: How to tell the difference between endometriosis and ovarian cancer.

Current Treatment Strategies for Endometriosis

Current effective treatment for most 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 the visible disease if at all possible.  But this should not be indiscriminate and 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 take into account what the pain triggers are.   These can differ between people. Both of these supportive therapies are complex but integral to treatment in the vast majority of 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 syndrom (CIRS), autoimmune hypothyroidism, fibromyalgia, irritable bowel syndrome (IBS) or disorders of gut-brain interactions, 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 water logged 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 neuromodulatory 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 of 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 pathway but that can actually be a good thing.  Abnormal cells like endo know 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 actually 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 and, more specifically, a significant part is related to nutrigenomic epigenetics. 

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 pretty far with a personalized anti-oxidant anti-inflammatory diet and that is most often embodied by a whole food plan-based diet.  Combine this with an exercise plan and stress management and you are 80% of the way there. 

Read more: Integrative Therapies for Endometriosis

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.

Read more: Breaking the Cycle: Understanding Endometrioma Recurrence After Surgery.

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

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 Cancerf

9 months ago Endometriosis , Endometriosis Education No comment

Is Endometriosis Genetic? 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.

Read more: The Different Tests Used to Diagnose Endometriosis 

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. 

Read more: Why You Need an OB-GYN Who Specializes in Endometriosis

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. 

Read more: Debunking the Myths About Endometriosis & Exploring the Facts

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.

9 months 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.

10 months 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.

10 months 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

10 months ago Endometriosis , Endometriosis Education , Endometriosis Mental Health No comment

Understanding Fatigue and Endometriosis: A Practical No-Nonsense Guide

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

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

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

Understanding Fatigue and Endometriosis:

The Impact of Chronic Pain:

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

Hormonal Imbalances:

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

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

Sleep Disturbances:

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

Anemia:

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

Inflammation and Immune Dysfunction:

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

Management Strategies for Fatigue:

Pain Management:

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

Lifestyle Modifications:

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

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

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

Stress Management:

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

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

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

Support Networks:

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

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

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

Conclusion:

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

References:

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

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

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

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

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

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

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

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

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

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

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

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

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

1 year ago Endometriosis No comment

The Different Tests Used to Diagnose Endometriosis 

Endometriosis is a common condition affecting an estimated 10% of women in the United States. Unfortunately, it can be tricky to diagnose, and no single test can definitively confirm it. To diagnose endometriosis, doctors must use a combination of tests. This blog post will discuss the different tests used for diagnosing endometriosis. 

History and Physical Exam 

The first step in diagnosing endometriosis is taking a history and a physical exam. During this exam, your doctor will assess your abdomen and pelvis for any signs of swelling or tenderness. They may also order blood work to check hormone levels and screen for other conditions with similar symptoms. 

Can you see endometriosis on blood test?

Imaging Tests 

Your doctor may also order imaging tests such as an ultrasound or MRI (magnetic resonance imaging) scan to better look at your reproductive organs and rule out any other possible causes of your symptoms. Ultrasounds use sound waves to create images of internal organs. MRIs use magnetic fields to produce detailed images of soft tissue structures like the uterus and ovaries. 

Laparoscopy 

Finally, if all other tests come back inconclusive or your doctor suspects endometriosis due to its similarity with other conditions, they may recommend a laparoscopy. This procedure involves inserting a tiny camera into the abdomen through small incisions near the navel area. This tiny camera allows them to look at the pelvic area better and take samples for further testing if necessary. Laparoscopies are usually done under general anesthesia, so you will not feel anything during the procedure. 

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.

1 year 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.

Endometriosis surgery costs

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!

Featured specialists:

• 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 , Menopause Endometriosis No comment

Endometriosis And 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. 

Endometriosis causes

Types of Endometriosis Pain & Natural, Medical & Surgical Treatment

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.

All symptoms of endometriosis

Join endometriosis forum and discover endometriosis stories

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.

2 years ago Endometriosis , Endometriosis Education No comment

What Does Endometriosis Feel Like? Types of Endometriosis Pain & Natural, Medical, and Surgical Treatment

Learn How People Feel Endometriosis Pain in Different Locations

Endometriosis pain is hard to explain to people who have never experienced it. Why? For many reasons. One of them is that each patient with endometriosis (endo) will endure their specific type of pain. Some patients experience pain during sex, while others may have pain after sex. Another example is that some patients have endometriosis pain in the lower back, and others sometimes have it all over the back and even the hips!

Want to know how to deal with endo pain? In this article, we will review the various types of endo pains, their locations, characteristics, and treatments. 

Get the pdf Version of this article

Read more: How Do I Know If I Have Endometriosis? Endometriosis Signs

Endometriosis signs and Symptoms

Table of Contents

1- Where is Endometriosis Pain Felt?

2- What Does Endometriosis Pain Feel Like?

3- Why Do Endometriosis Patients Experience Different Types of Pain?

4- Different Types of Pain and Their Origins

5- How Does Endometriosis Pain Differ From Menstrual Pain?

6- Endometriosis Pain Treatment Options

7- Do You Have Endometriosis Pain?

Where is Endometriosis Pain Felt?

Unfortunately, it can be difficult to distinguish exactly where endo pain is coming from. This difficulty is because endometriosis pain can feel non-specific and may affect various parts of your body at different times. Can endometriosis cause back pain? Yes. Some patients experience endometriosis rectal pain or generalized pelvic pain – while other people with endo might have pain in their chest, back, or even hips. To that end, pain location usually results from where the endometriosis tissues reside inside the body. 

What Does Endometriosis Pain Feel Like?

It can be tough to explain what endometriosis pain feels like. This is especially true when a woman tries to explain this pain to a guy. For one, most women complain that endo pain feels like very excruciating period cramps. However, unlike period cramps, many patients with endometriosis report that this sensation is not limited to just the area surrounding the uterus. Patients with endometriosis often experience:

• Pelvic pain
• Abdominal pain
• Pain during bowel movements
• Sciatic pain
• Pain during or after intercourse
• Leg pain
• Rectal pain
• Pain with urination

Menstruation can exaggerate these types of endo pains. But many patients experience these symptoms outside their period. 

Why Do Endometriosis Patients Experience Different Types of Pain?

Endometriosis is a chronic inflammatory condition that affects each patient differently. Why? For the most part, the type of endometriosis pain you experience will depend on the location of the lesions and the progression of the disease. Furthermore, feeling the pain in one part of the body doesn’t mean that it originated from that body part. It is because pain often radiates to other parts of the body.

Endometriosis After Menopause

Different Types of Pain and Their Origins

Pelvic Pain

Endometriosis is when tissue similar to the endometrium grows outside the uterus. In most cases, these tissues grow in areas close to the uterus, i.e., your pelvis, reproductive organs, and abdomen. 

Meg Connolly, diagnosed at the age of 23 with endometriosis, said that:

“Endometriosis causes a pain that’s very difficult to describe. It’s more than just ‘bad cramps’ — it’s the type of pain that even over-the-counter (OTC) medicine won’t resolve.”

Back Pain

Can you have back pain with endometriosis? Absolutely. The endometrial growths can stick to the front of your pelvic cavity or your lower back. Endo back pain presents deep within the body. This condition can result in sciatic pain.

Is the back pain you experience caused by endometriosis? Back pain is a common ailment among patients of all demographics. However, endometriosis back pain stems from deep inside the body. Furthermore, another indication your back pain might be from endometriosis is that it won’t improve by seeing a chiropractor or changing your posture. 

Leg Pain

Leg pain can result from endometriosis when the lesions grow near or on the sciatic nerve. Patients describe endometriosis leg pain as the following:

• A dull throb
• A sharp stabbing sensation
• A sudden spasm that feels similar to a leg cramp

Patients with severe leg pain from endometriosis may have difficulty walking comfortably or standing up quickly. 

Pain During Intercourse

Endometriosis tissue and scars around it can result in a painful nodule to touch. These nodules may occur in several places, including:

• Cervix
• Uterus
• Pelvic cavity
• Rectovaginal septum

The presence of these nodules may lead to sharp pain felt in the vaginal or abdominal areas during sexual intercourse or immediately after.

Endometriosis Painful Bowel Movements

Endometriosis tissue can grow in the bowel wall or the space between your rectum and vagina. This abnormal growth results in these symptoms:

• Diarrhea
• Difficulty passing urine
• Irritable bowel syndrome (IBS)
• Painful bowel movements

Bowel pain can be sharp and consistent. Moreover, pain from the bowels can worsen if combined with poor lifestyle habits, such as diets high in greasy processed foods.

Causes of Endometriosis

How Does Endometriosis Pain Differ From Menstrual Pain?

Endo pain is different from normal menstrual pain. But also pain from this disorder typically feels different for each person who experiences it. However, there are a few things that set endo pain apart from menstrual pain, including:

• Endo pain is typically chronic, lasting for more than six months.
• The pain happens several times in the month, before and during your menstrual cycle. 
• Frequently the pain is severe. As a result of this severity, over-the-counter pain relievers typically do not provide relief.
• Endometriosis pain is often consistent. Therefore patients can usually recognize it when the symptoms come on.

Endometriosis Pain Treatment Options

Pain relief for endometriosis can be natural, medical, or surgical. Learn more about these three types below. But it is important to know that natural and medical solutions are mostly temporary relievers from this list, and surgery is considered the most permanent treatment.

*Note: iCareBetter is not endorsing any of the treatments but instead provides a list of what helps other patients and routinely performed treatments.

Natural Treatment for Endometriosis Pain:

• Rest
• Turmeric
• Light exercise
• Castor oil 
• Ginger tea
• Dietary changes
• Pelvic massage
• Herbal supplements
• A heating pad or hot water bottle

Medical Treatment:

• OTC pain medications
• Physical therapy
• Prescription pain medication
• Mental health provider that specializes in pain management
• Some physicians prescribe hormonal therapy, such as contraceptives. However, new research shows this treatment for endometriosis pain is not a one-size-fits-all solution. A recent study out of Yale came to the following conclusion: 
  • “PR (progesterone receptor) status is strongly associated with response to progesterone-based therapy. Receptor status in endometriosis could be used to tailor hormonal-based regimens after surgery and negate trialing progestin-based therapy to determine resistance. Ascertainment of PR status may allow for a novel, targeted, precision-based approach to treating endometriosis.”

Surgical Treatment

• Minimally Invasive Surgery for endometriosis is a way to remove endometriosis lesions permanently and help with the pain. In this procedure, the surgeon cuts small incisions into the abdomen and inserts a thin tube with a viewing light (a scope) into the body. Then this scope can visualize lesions, take tissues samples, and remove scarring. 
• A laparotomy is a surgical procedure where the surgeon cuts and opens the abdomen and does not use thin tubes. However, laparotomy is more extensive than minimally invasive surgery and is not often performed in modern medicine due to the risk of complications.

Read more: How to Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery

Do You Have Endometriosis Pain?

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.

2 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.”

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

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.”

Read More: How Does Endometriosis Cause Infertility?

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.”

Endometriosis Facts

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.

2 years ago Endometriosis , Endometriosis Education , Endometriosis Fertility 1 comment

Endometriosis and Pregnancy: 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.

2 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?

2 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

Endometriosis (endo) diagnosis can be a frightening thing. Very frightening. While this inflammatory condition can be binary or non-binary, women of child-bearing age are prone to issues with reproduction due to endo. So does endometriosis cause infertility? Keep reading as I break down the basics on this topic. I will also discuss the emotional impact on patients.

What is Endometriosis?

Endometriosis is a chronic inflammatory condition. In this disease, endometrium-like lesions (the tissue that lines the uterine walls) grow outside the uterus. These glands or stroma cause chronic inflammatory reactions. Endometriosis tissue can occur on the surface of other body parts in the pelvic cavity and distant organs such as the diaphragm, lung, and heart. 

Because these endometrial-like lesions shed blood and tissue, many problems result. Pain is a common symptom because the blood and tissue have no way to leave the body. This pressure can result in unbearable pain and other symptoms. If you would like to learn more about what endometriosis is, check out our previous article.

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 same 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.

How Endometriosis and Fertility are Connected

The association between endometriosis and infertility is well-established. However, there may be multifactorial reasons why it occurs, including molecular, mechanical, environmental, and genetic causes. 

There are some theories to explain infertility in endometriosis. The following are just a few:

• Inflammation leads to the production of chemicals known as cytokines. These cytokines can inhibit the egg and sperm from meeting each other, which makes fertilization more difficult.
• Endometriosis-related scarring and adhesions can block the fallopian tubes or uterus space. This blockage makes it difficult for the sperm to meet the egg and implant in the endometrium.
• Endometriosis lesions on the ovaries can inhibit ovulation and block the release of an egg.

Read More: How Does Endometriosis Cause Infertility?

Other Data on Endometriosis and Reproduction

Studies have also demonstrated that the enzyme, Aromatase may also play a role in endometriosis 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.

Endometriosis Infertility Treatment Options

Patients with endometriosis do have a substantial risk of infertility or problems getting pregnant. According to studies, the amount of endometrial-like tissue visible during a laparoscopy correlates with the possibility of future fertility. For this reason, if you have endometriosis and would like to become pregnant, early treatments for endo and fertility are crucial. This is because the stage of endo might progress within time, which increases the risk of infertility.

Laparoscopy: A Common Treatment for Endometriosis

Can endometriosis cause infertility? Yes, in some patients. However, in most cases, endo does not entirely prevent conception. Traditional treatments for endometriosis approached most cases of endo with total hysterectomies. But these approaches are now outdated. New science-based evidence shows that hysterectomies and oophorectomies are not always needed. That is because these surgeries do not often work to remove all the endometriosis tissue. 

A skilled endometriosis specialist goes in the pelvic and abdomen with thin tubes and excises the endometrial-like tissue for best surgery results. This surgery often requires OB-GYN surgeons with advanced training in endometriosis treatment. It typically involves advanced surgical equipment, such as laparoscopy, robotics, and AI technology. 

Now let’s review the endometriosis treatment options in the context of pregnancy and fertility.

Medical Treatment Options for Endometriosis

• Ovarian suppression, such as hormonal therapies or oral contraceptives, is not recommended for women who wish to conceive. This highly-debated advice gained support from a large study that found no difference in pregnancy rates and live birth rates in patients with endometriosis who took a hormone vs. placebo.
• An endometriosis diet by nutritionists that work on endo can be helpful. The diet can help increase the patient’s likelihood to conceive with endometriosis and maintain that pregnancy to a full-term birth.
• The Guideline Development Group (GDG) does not recommend the prescription of adjunctive hormonal treatment before surgery in infertile women with endo.

Surgical Treatment Options for Endometriosis

• The goals of surgery are to remove all macroscopic endometriosis implants and return the pelvic cavity to normal anatomy. While these are the goals, not all surgical procedures or endometriosis specialists will stop this inflammatory disorder or restore the pelvic cavity to its normal anatomy.
• It’s crucial to weigh the pros and cons of surgical intervention.
• Endometriosis minimal invasive surgery by an expert is the preferred surgical procedure because:
  • It causes minimal damage to the tissue.
  • It’s assisted with magnification.
  • There is a relatively fast recovery time.
  • Mostly only a short hospital stay is involved.

How Women with Endometriosis Suffer Emotional Impact

Women who deal with endometriosis reproductive problems may experience a variety of feelings, such as:

• Stress
• Worry
• Grief
• Confusion
• Anger
• Sadness
• Feelings of inadequacy

As mentioned above, over 30% of women with fertility problems have endometriosis. If a woman is already distressed about becoming pregnant, the shock of an endometriosis diagnosis may amplify those emotions. 

Furthermore, women with endometriosis may feel further pressure to have kids sooner to increase their likelihood of success. But, that’s not always practical. Some do not have a partner or might not even know if they want to have kids. Perhaps they are with someone who does not wish to or is not ready for kids. They might also be with someone they have not been with for very long, so they are unsure if they want children. Many factors can cause stress on women with endo to try to get pregnant right away.

For those ready and trying to get pregnant, fertility issues caused by endometriosis may also create feelings of frustration, hopelessness, and sadness. These feelings are the reasons why it’s crucial to incorporate a mental health expert as part of your holistic endometriosis treatment team.

Psychological Impact of Fertility Treatment for Endo Patients

Furthermore, a whole new slew of emotions comes with those patients who move on to endometriosis fertility treatment. Excitement. Happiness. Disappointment. Sadness. 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

Did endometriosis cause infertility issues for you? How has that impacted your life?

2 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 on 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 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 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.

Get the pdf Version of this article

Table of contents:

1- What is Endometriomas (Deep Ovarian Endometriosis)? 

2- Recurrence of The Lesions Following Surgery

3- linical Impact of Endometriomas (in Women of Reproductive Age)

4- Major Concerns

5- Treatment and Surgery Options

6- Final Thoughts and Question for Readers

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 , 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 Facts & Myths: 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 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 Dr.

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 , Endometriosis Specialist 9 comments

Find an Endometriosis Specialist Doctor for Diagnosis, Treatment, & Surgery

Why It’s Important Your OB-GYN Specializes in Endometriosis?

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 should never just walk into the office of a random obstetrics/gynecology (OB-GYN) surgeon. 

However, it can be a bit tricky to find an endometriosis specialist that is highly skilled and follows the best treatment 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 to 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 endometriosis forum or Instagram page and discover endometriosis stories & discussions

This article will cover:

• What is an Endometriosis Specialist?
• How are Endo Specialists Different than Typical Gynecologists?
• The Role of Endometriosis Specialists in Treatment
• Finding the Right Doctor for Endometriosis Treatment
• Considerations When Looking for an Endometriosis Specialist
• Red Flags About a Potential Endometriosis “Expert”
• How Can I Find an Endometriosis Specialist Near Me?

What is an Endometriosis Specialist ?

Doctors with extensive experience in treating and caring for patients with this condition are known as endometriosis specialists. They are typically obstetricians and gynecologists (OB/GYNs), which are doctors who treat female pelvic organs, reproductive issues, and deliver babies. Therefore, most endometriosis specialist are also skilled surgeons.

Read more: 7 Ways to Prepare For First Endometriosis Specialist Appointment

How are Endometriosis Specialist Different than Typical Gynecologists ?

Practitioners who specialize in endo care mostly for patients with endometriosis. From surgical treatment to medical management, their guidance is unparalleled to that of a gynecologist who serves general patients. You find endometriosis specialist at large teaching hospitals, medical centers, and private practices with gynecological surgeons.

The Role of Endometriosis Excision Specialist in Treatment

The right specialist will have extensive knowledge of this disorder and the additional surgical training and skills it takes to effectively treat endo and the related conditions. Furthermore, the endo doctor should also have experience with modern techniques and access to state-of-the-art equipment – which often includes robotic or laparoscopic surgical tools. Additionally, 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.

Patients report the most important thing about a surgeon is that they take their time and carefully listen to you. A good surgeon will pay attention when you speak and not challenge your knowledge or experience.

Read more: Common endometriosis symptoms

Uncommon symptoms of endometriosis

Finding the Right Doctors Who Specialize in Endometriosis

Endometriosis is a painful disorder that affects up to 10% of women. It is caused by cells similar to those in the lining of the uterus growing outside of it, leading to pain and other symptoms such as fatigue, heavy menstrual cycles, and infertility. As endometriosis can be challenging to diagnose and treat, finding the right doctor for your condition is essential for successful treatment. When selecting a doctor for endometriosis treatment, let’s look at what you should consider. 

Types of Doctors 

When looking for a doctor to treat your endometriosis, consider seeing an experienced OB-GYN or a Reproductive Endocrinologist (RE) specializing in treating fertility problems. An expert OB-GYN can provide surgical options, general care for your reproductive health, and address any issues related to your pain. They may also be able to refer you to an RE if they believe further testing or treatments are necessary. 

An RE specializes in diagnosing and treating difficulties with fertility, including endometriosis. They have received specialized training in reproductive medicine, making them uniquely qualified to diagnose and treat endometriosis. Seeing an RE may help you get a more accurate diagnosis and provide access to treatments such as hormone therapy or surgery that can relieve the symptoms of endometriosis and achieve fertility.

Qualities To Look For 

When selecting a doctor for endometriosis treatment, there are certain qualities that you should look for to ensure that you are getting the best care possible. Your doctor should have experience treating endometriosis, understand the physical and psychological aspects of living with this condition, and provide comprehensive care from diagnosis through treatment options and follow-up visits.  

Choosing the right doctor for your endometriosis treatment is essential for successfully managing this chronic disorder. When selecting a physician, make sure they have experience treating this condition and understand both its physical and psychological components so they can provide comprehensive care from diagnosis through follow-up visits. By doing so, you can ensure that you receive appropriate care explicitly tailored to your needs and get relief from your symptoms to lead a healthier life.

Considerations When Looking for an Endometriosis Specialist

Your endometriosis specialist will be a teammate with the common goal of getting you to living your best life. Ask a lot of questions and listen to the answers. Here are some considerations when looking for an endometriosis expert near you: 

• Does the doctor have experience with various medical conditions related to endometriosis?
• Does the doctor specialize in the treatment of adult or adolescent endometriosis? Or both?
• Is the doctor receptive to your information and input? What is their attitude towards your healthcare treatment?
• Does the doctor rush you through assessments and questions, or do they take their time?
• Does the doctor speak to you in terms you understand? (This is particularly important during the explanation of tests and/or surgical procedures.)
• What is the doctor’s belief on the use of hormonal therapies? Do they have medical justifications for prescribing them? Can they tell you the pros and cons of these options?
• Do you feel comfortable speaking with the doctor? Endometriosis pain and symptoms can be hard to discuss, so it’s important you feel at ease.
• Does the doctor work in cooperation with other professionals to offer holistic treatment, (i.e. physical therapists, pain specialists, psychotherapists, gastroenterologists, etc.)?

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:

Red Flags

• 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 diagnosing and staging 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. Same is true for MRIs and laboratory studies.
• Hormone therapy will cure endometriosis. Studies show that hormonal medications can help temporarily reduce endometrial lesions, 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.

How Can I Find an Endometriosis Specialist Near Me ?

Now that you’ve read more about the importance and what to look for in an endometriosis specialist, are you ready to connect with someone in your area? At iCareBetter, our passion is to connect patients with vetted endo specialists. Go to the directory to learn how we can help you get on the road to health and improve your quality of life.

Top Endometriosis Specialist and Doctor

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

Endometriosis specialist New York

Endometriosis specialist California

Endometriosis specialist Virginia

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

3 years ago Endometriosis , Endometriosis Education No comment

What are the First Signs of Endometriosis and Symptoms: 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 – 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.

Read more: How to Find an Endometriosis Specialist for Diagnosis

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.

Table of contents

1- What is the Endometrium?

2- What is Endometriosis?

3- Signs and Symptoms of Endometriosis

4- Causes of Endometriosis

5- Complications of Endometriosis

6- Diagnosis of Endometriosis

7- Treatment for Endometriosis

8- Surgical Treatment Options for Endometriosis:

9- Multidisciplinary care

10- Find a Vetted Endometriosis Expert

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?

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

Not all women will experience the same symptoms of endometriosis or degree of intensity/severity. Some women may not experience any symptoms at all. 

20 Signs and Symptoms of Endometriosis

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 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.

Join the discussion and discover other stories :

What were your uncommon symptoms of endometriosis?

What were your endometriosis symptoms?

Does Endometriosis Go Away After Menopause?

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

More articles from Dr. Steve Vasilev:

Endometriosis And Menopause: Everything You Need To Know

Understanding the Connection between Endometriosis and Cancer

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

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]