What Cause of Endometriosis?
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Actionable Insights into the Cause of Endometriosis and Evidence-Based Treatments on the Horizon
Most of what you read online and in books or articles says something like “The cause of endometriosis is unknown, but we have a number of theories, some of which are more likely than others.” But what does this practically mean for you as an individual? As someone who is looking for answers for pain relief or infertility solutions or a diagnosis or why your endo recurred, you probably want practical answers not abstract theories. Actionable answers seem remarkably elusive. To add to your frustration, you may also find yourself stumbling upon a storm of “controversies” regarding the best treatment options, further muddying the water in your personal quest for answers.
Basically, endometriosis is a chronic and often painful condition that affects at least 10% of women (XX) of reproductive age and significantly, but not entirely, fueled by sex hormones, mainly estrogen. It is exceedingly rare in men (XY) but has been reported with high doses of prolonged estrogen therapy for prostate cancer and similar conditions. Thus, the scope of how many people with endometriosis may be changing. Endo may have increasing implications for trans women who might be prescribed prolonged estrogen therapy.
This article is an introductory overview of the most current research on the etiology, pathobiology, and potential therapeutic strategies for this extremely complex and prevalent condition. In other words, it attempts to connect what we know with some practical insights for you to base decisions on, including factoring in what may be coming as options down the road. This may or may not alter your decision-making today as well.
At the end of this article, we will introduce some practical tips and strategies for getting you to where you want to go. But you must understand the basis for these first, or it won’t make sense.
What is Endometriosis?
Endometriosis is a medical condition characterized by the growth of endometrial-like tissue, similar to the internal lining of the uterus, outside the uterus. You see this mentioned a lot, but what does it mean exactly? It means that the cells look quite similar under the microscope, but molecularly they are very different.
Gene expression : Endometriotic cells often express genes associated with survival, inflammation, angiogenesis (blood vessel formation to have access to nutrients), and invasion more highly than typical endometrial cells. Major examples include genes coding for COX-2, VEGF, MMPs, and various cytokines, which are often upregulated. These all encode for aggressive epigenetics (something you will read about below): Epigenetic differences, including DNA methylation and histone modification differences, have been observed between endometriotic and endometrial cells. These changes can alter gene expression without changing the DNA sequence itself.
Hormonal responses: Endometriotic cells often show altered responses to hormones, including estrogen and progesterone. For example, they usually contain higher levels of aromatase, an enzyme that produces estrogen. In addition, they may be less responsive to progesterone compared to normal intra-uterine endometrial tissue due to changes in progesterone receptor expression.
Immune response: Endometriotic lesions often contain immune cells, such as macrophages and T cells, and produce pro-inflammatory cytokines. This suggests an ongoing inflammatory response, which may contribute to the symptoms of endometriosis and the survival of endometriotic cells outside the uterus.
The presence of these aberrant endometrial-like tissues in ectopic or unusual locations often results in chronic pelvic pain, intestinal symptoms like bloating, fertility problems, and a lot of other symptoms that can significantly impact the quality of life.
The Prevalence and Impact of Endometriosis
Beyond affecting at least 10% of XX women and potentially an increasing number of XY trans-women, the condition is detected in up to 50% of women seeking treatment for fertility issues. Moreover, epidemiological studies suggest that women with endometriosis may be at a higher risk of developing other health conditions including, but not limited to, asthma, rheumatoid arthritis, intestinal dysbiosis, other immune dysfunction, cardiovascular disease and even cancers like ovarian, breast and melanoma. So, while endo cannot explain all symptoms, these symptoms and signs may still be very related and due to a common root cause of endometriosis. Too often, an endo diagnosis is extremely delayed, up to a decade, because medical evaluation and testing do not explore these connections. In other words, for example, intestinal complaints are looked at in isolation, and connections to painful periods, pain during sex, or infertility are overlooked.
Symptoms and Diagnosis of Endometriosis
While debate concerning possible causes of endometriosis may continue for some time and the etiologies may overlap or differ between individuals, the first step is to get a correct diagnosis. That leads to the best personalized and informed treatment plan.
The symptoms of endometriosis can vary greatly based on where it is located in your body, the inflammation it is causing and all of the related conditions. But, the most common symptoms include bloating, chronic pelvic pain (both cyclical and non-cyclical), painful menstrual cycles, painful intercourse, and pain during bowel movements and urination. In addition to physical discomfort, endometriosis is often associated with fatigue and depression, further compounding the impact of the condition.
Diagnosing endometriosis is challenging due to the overlap of its symptoms with more common conditions. This can result in up to a decade of visiting emergency rooms and various specialists, who look at the symptoms through their specialty’s diagnostic lens with somewhat of a tunnel-vision result. So, a gastro will focus on the gut, a general gynecologist will focus on the uterus and ovaries, a neurologist will focus on nerves, a urologist will focus on the bladder, and so on, all looking for common diagnoses within their specialties. These more common diagnoses are usually not endometriosis. Further, there are no specific blood tests yet and imaging is not very accurate. However, inflammatory markers and other tests can help an endo specialist hone in on the diagnosis. Similarly, imaging via ultrasound or MRI may be helpful in finding obvious signs of endometriomas (ovarian cysts filled with old blood and endometriosis tissue) or deep infiltrating type of endometriosis. This simply helps preparation for surgery in the event of findings like disease near the sciatic nerve or growing into the bladder or rectum. However, if negative, the surgeon and/or team must still expect and be ready to handle the unexpected.
Today, a definitive diagnosis of endometriosis can only be achieved by biopsy, usually during a diagnostic minimally invasive surgery. Ideally, the surgeon who is operating should be capable of removing any endo that is found by excising it, at that time and not at a subsequent surgery. This is where the diagnosis overlaps with an effective known treatment, excision surgery. The skill base for this is usually beyond most general gynecologists unless they have devoted extra time and training to acquire more advanced surgical skills. If possible, this diagnosis and possibly therapeutic surgery should be done correctly the first time to minimize misdiagnosis, complications and repeat surgeries.
Based on some of what you are about to read, diagnostics will likely soon be enhanced, and accurate blood tests will become available for diagnosis and monitoring. These tests will be based on proteomics and miRNA signatures, which means that endometriosis is associated with various measurable proteins and ribonucleic acids (RNA) of a specific kind, circulating in the blood. A lot of research has already been done on this, but it is a matter of finding a combination of these that is accurate.
Unraveling the Cause or Causes of Endometriosis
It is highly unlikely that there will be a discovery of “THE’ unifying cause of endometriosis any time soon, if ever. However, this is still possible on a gene level and is a focus of ongoing research. But when you are looking for actionable, practical answers, this uncertainty should be framed a little better. Far more likely than not, the causes (plural) of endometriosis are polygenic (multiple gene aberrations), multifactorial, and most likely differ between individuals. The same situation exists in other diseases we treat. There is no single cause of cancer, blood pressure problems, different types of diabetes, and so on. Yet, treatment options are increasing because we are now searching for causative factors and targeted therapies at a molecular, genetic, epigenetic and genomic level. That is a mouthful, but these subcellular molecular factors control everything in your body, normal and abnormal. More on this below.
Theories
One of the most widely accepted theories for the origin of endometriosis is the very old concept of “retrograde menstruation”, proposed by Sampson. It has been both overly glorified and vilified and certainly misunderstood often. This theory suggests that endometrial tissue fragments and cells escape from the uterus during menstruation, being forced backward through the Fallopian tubes, and implant in the pelvic cavity, directly forming endometriosis lesions. But since retrograde menstruation is very common (at least 70-90% of all women based on laparoscopy observational studies), why do most or all women with a uterus not have endo? Also, from a molecular point of view, eutopic endometrium and ectopic endometriosis cells differ in many respects. The answer to these disconnects is that perhaps this theory is indeed totally wrong and outdated. Or perhaps there are factors in most women that can bio-molecularly or immunologically repel the growth of spilled endometrial cells, while some can’t. Or perhaps, since we know somatic stem cells exist in the endometrium, only a fraction of a certain type of stem cell may grow and differentiate if dropped into the peritoneal cavity and not all endometrial cells. So, before completely retiring this theory, more sophisticated studies are required with today’s scientific tools. We have come a long way since the limited science that was available more than 100 years ago, when this was initially proposed.
One thing is for certain, for endo to grow and cause problems it must get there somehow and take root first. Other than retrograde menstruation, how else might that happen?
Other theories as to how endo originates include:
1/ Müllerianosis, which means an organoid structure called a “choristoma” composed of Müllerian rests which are islands of tissue of endometrial, endocervical and endosalpingeal that are deposited in unusual areas during the growth of an embryo. This was also suggested by Sampson.
2/ Coelomic metaplasia: this theory suggests that peritoneal mesothelium (lining) could transform into endometrial-like tissue (also proposed about 100 years ago)
3/ Endometrial somatic stem/progenitor cells may play a role in the formation of endometriosis lesions, getting to the peritoneum either by retrograde menstruation (a variation of the original theory) or via lymph or tiny vascular transport channels
4/ Benign metastasis, meaning that endometrial cells are transported by the lymphatic system beyond the uterus
5/ Bone marrow pluripotent stem cells (i.e. can turn into any cell imaginable), which we know circulate in the blood, can reach the pelvis or other areas directly, implant due to a favorable local growth environment and grow.
There are others, and variations or mixtures of the above have also been proposed.
The truth, as almost always, is likely in between all these theories and likely differs between individuals to some extent. Today, we have molecular evidence that supports most of the above in varying degrees and tends to overlap.
Endometriosis Growth and Progression
Finding out how endometriosis develops will eventually lead to prevention strategies, which may be highly individualized. But for now, the more actionable question is, once the initial cells are there, what causes them to grow and regrow, and at different rates? It is the growth that gets you into trouble with symptoms by triggering inflammation, fibrosis (scar tissue) and pain. Keep in mind that there are three general types of endo: 1/ superficial 2/ deep infiltrating and 3/ endometrioma. These can overlap, or not. So, most likely, there will never be a one-size-fits-all solution.
However, what happens with progression, when it happens and why it happens is where the rubber meets the road. In answering these questions, insights and actionable strategies can be developed. The following are avenues or pathways by which endometriosis cells can be fueled to grow. Therefore, they present actionable intervention possibilities, now and into the future as we identify more targets.
So, the following is where we are going with all this. What is medically/surgically actionable now and what you can do proactively today that may influence your personal situation? The latter is in the realm of lifestyle and diet but grounded in science. There is a lot of woo-woo “alternative” stuff out there but also quite a bit of holistic natural options that is evidence-informed and can be helpful.
Genetics and Genomics
From epidemiologic, twin, single gene, and genome-wide association studies (GWAS) there is little doubt that risk factors for developing endo is largely grounded in multiple genes (polygenic) and their polymorphisms (alterations of various magnitudes). In addition, genes can interact with each other, either amplifying or reducing disease. But inheriting less desirable gene polymorphisms or mutations is not the be-all end-all because how these genes are activated or suppressed is dependent upon other multifactorial influences (e.g. your environment, including nutrition, toxins and lifestyle choices). In other words, you may inherit good cards or bad cards, but how they play out can be influenced. These influences are based on genomics and epigenetics and related sciences like proteomics, metabolomics, nutrigenomics, and so on. Basically, these sciences all study how genes are suppressed or expressed.
Epigenetics
Epigenetics studies how genes are controlled or expressed without changing the inherited DNA sequence. “Epi-” means on top of the genes. These are modifications that attach to the DNA, like methyl groups (from diet and supplement sources), which can suppress or help activate genes. Environmental factors such as diet, hormones, stress, drugs, chemical toxin exposure alter methylation. Directly related to endo, alterations in DNA methylation patterns in endometriotic lesions have been described. The epigenome harbors other ways that this gene to environment interaction occurs. This includes histone modification, which is regulatory mechanism that controls unraveling of DNA so it can be read or transcribed. This is also subject to lifestyle and dietary influence today and is a major potential therapeutic target for the future.
Hormonal imbalances
Endometriosis is often described as a “steroid-dependent” disorder, reflecting the significant role of steroid hormones, mainly estrogen, in its pathogenesis.
This is a VERY complex influence and defies logic in some cases. It is not as simple as therapeutically adding or taking away estrogen or progesterone. Rather, it depends on tissue levels of estrogen and progesterone as well as the number and sensitivity of estrogen and progesterone receptors. The hormones and their receptors work like a lock (receptor) and key (hormone). And that is just the beginning, because there are different components of receptors and additional molecular pathway influences, before and after estrogen binds to its receptor.
For example, there is more estrogen circulating when someone is significantly overweight, because there is production from the ovaries AND estrogen from fat cell interconversion AND from environmental xenoestrogen endocrine disruptors that are stored in fat. So that would mean the people who are overweight are more likely to have endo, right? Wrong. Endo is more common in women with a healthy BMI. In fact, problematic deep infiltrating endo and endometrioma types, is more prevalent in those who are very thin (BMI less than 18.5). Why? This is unknown, but various homeostatic mechanisms like estrogen receptor upregulation can hypothetically lead to higher estrogen sensitivity. Also, hormonal signals are not the only molecular influence on endo.
As another example, after menopause , estrogen levels drop and endometriosis does tend to regress, but not in everyone. That is partly because endometriosis lesions can produce their own estrogen and there are likely other molecular growth factors in play. There are also more ERβ receptors on endometriosis cells, and this causes higher prostaglandin production (which contributes to pain at any point in life).
In general, lowering “estrogen-dominance” to some degree suppresses endometriosis, but ideally not using synthetic progestins to “balance” hormones. Progesterone (natural) and progestins (synthetic) do downregulate and limit the mitogenic (growth) influence of estrogen but progestins can also be a mitogenic in some tissues (e.g. breast). In addition, overall progesterone or progestins exert less of an effect on endometriosis than on eutopic endometrial tissue normally found inside the uterus. Likewise, dropping estrogen levels radically via GnRH agents for a relatively short period of time does not achieve the desired result and causes side effects and harm. The risk vs benefit is particularly precarious here. Potentially, chronic gentle suppression might be more effective, and at least safer. This can be achieved by using progesterone. Synthetic progestins like norethindrone acetate can be used but with the caveats above. Alternatively, you can also help “balance hormones” by consuming seaweed, regular exercising and other lifestyle choices, like active xenoestrogen toxin avoidance.
Inflammation
Endometriosis may be partially a product of inflammation and is also characterized by generating an inflammatory response itself. So, it can snowball and contribute to the development and persistence of symptoms. Immune cells, such as macrophages, NK and T cells, are found in abundance in endometriosis lesions, and their interactions with endometriosis cells can promote the formation and growth of these lesions. Additionally, the peritoneal fluid of women with endometriosis often exhibits an altered composition, with increased levels of pro-inflammatory cytokines and growth factors.
Inflammation can be from various sources, including infection which may be clinical (in other words you feel sick) or chronic subclinical. For example, it is well established that chronic endometritis (infection inside the uterine lining) is present in endometriosis patients more often than those without endo. This is an association, and the cause-effect is not well worked out, but more recently various bacteria have been implicated. At least in animal models, antibiotic treatment targeting those bacteria have produced regression of endometriosis lesions. Bacteria from the uterus or cervix can easily travel, either directly through the Fallopian tubes or via the bloodstream, to cause inflammation in the peritoneal cavity. This inflammatory response is postulated to lead to progression of endo.
Leaky gut, which may be related to an unhealthy low microbiome diversity, can lead to bacterial fragments, called lipopolysaccharides (LPS), seeding the peritoneal cavity as well. This in turn causes inflammation and the same potential effect on endo growth.
Inflammation is not all due to infection. It can be due to a myriad of other non-infectious factors including stress, autoimmune disorders, obesity, systemic diseases like diabetes or pre-diabetes, mast cell activation, toxin exposure and so on.
Most of these inflammatory conditions are molecularly actionable and are the target of research. For now, general anti-inflammatory strategies can be effective, both pharmacologic and integrative.
Dysbiosis
Dysbiosis of the gut has a direct negative effect on the gut-endocrine axis and can impact endometriosis growth. There are three significant ways this happens.
Estrobolome: This term refers to the fraction of gut microbiota capable of metabolizing estrogens. In healthy individuals, the estrobolome helps maintain a balance of estrogen levels by contributing to the enterohepatic circulation of estrogens, thereby affecting the overall circulating and excreted amounts of these hormones. Dysbiosis, however, can disrupt the functioning of the estrobolome, leading to alterations in the metabolism of estrogens. In the context of endometriosis, this dysbiosis may lead to excess circulating estrogen, which stimulates the growth and survival of endometrial cells outside the uterus, contributing to endometriosis.
Gut-Endocrine Axis: The gut microbiota also influences the gut-endocrine axis, which refers to the complex interplay between the gut microbiota, gut cells, and endocrine organs. Dysbiosis can result in changes in gut permeability (also known as “leaky gut” introduced above), leading to increased inflammation and immune dysregulation. This can, in turn, disrupt normal hormone regulation, potentially exacerbating conditions like endometriosis.
Gut-Brain Axis: Dysbiosis can also influence the gut-brain axis, a bi-directional communication system that links the central nervous system with the enteric nervous system. Changes in the gut microbiota can affect this axis and lead to altered pain perception and increased stress responses, both of which can affect the experience and progression of endometriosis.
Cancer molecular shared growth drivers
It’s important to note that a very small fraction of women with endometriosis might develop an endo-associated cancer (<1%), and gene mutations probably drive that. Having said that there is overlap of these genes with more aggressive variants of endo, like deep infiltrating and endometrioma. Meaning, they may not lead to cancer but may still fuel a more aggressive form of endometriosis. This has led some researchers to propose that endometriosis is a pre-cancerous condition in a small percentage of those with endo. The most studied gene in this regard is ARID1A, but the following have also been associated: KRAS, PTEN, HOXA10, VEGF, ESR1 and ESR2, and FN1. Since there is a lot of research on these in the cancer world, there may be targeted therapies for more aggressive variants of endometriosis arising from this research.
Current Treatment Strategies for Endometriosis
Current effective treatment for most endo patients is built upon a personalized evaluation, correct diagnosis, and expert excision surgery to reduce the amount of inflammation and triggering of pain and other symptoms. This is followed by some degree of medical suppression in many patients, usually on a hormonal basis. Personalized guidance is key, which does not go overboard by either over or under-treating.
Excisional surgery is today’s cornerstone because it yields an accurate diagnosis and removes all visible disease if possible. But surgery should not be performed indiscriminately. It should be done by an expert if the index of suspicion for endo justifies the surgical risks. It seems prudent to reserve consideration of medical suppressive treatments for use after an accurate diagnosis is made vs. use of potentially very dangerous hormonal therapies based on a suspicion of endo only.
Before and after surgery there are quite a few optimization strategies, including pelvic floor physical therapy (PFPT) and a pain management plan which consider what the pain triggers are. These can differ between people. Both supportive therapies are complex but integral to treatment in most cases. This helps you get ready for surgery and go through surgery more smoothly and then transition to a life without endo.
In addition, evaluation of the related conditions covered in this article, like dysbiosis and possible small bacterial overgrowth (SIBO) and leaky gut is mandatory. The symptoms can easily cross over from these conditions and endo, so it helps to sort out other related causes of pain and bloating. Finally, evaluation should also consider mast cell activation, chronic inflammatory response syndrome (CIRS), autoimmune hypothyroidism, fibromyalgia, irritable bowel syndrome (IBS) or disorders of gut-brain interactions, and interstitial cystitis (IS). There are also conditions not directly related to endo but often associated, like Lyme disease and mold. The latter two can accentuate inflammatory response and waterlogged damp buildings often have black mold. The CDC is also warning that tick-borne disease like Lyme and Babesiosis is on the rise.
Also, as you are now aware from reading this article, there are many other steps you can take to influence and limit the course of endo recurrence and progression . None of this is magic and none of it is a quick fix but when guided by an expert it is also generally pro-health, not dangerous and not expensive by and large. Again, best results are obtained with expert guidance.
Emerging Therapeutic Approaches
Although we have some options today, there is a pressing need for novel, effective therapies for endometriosis beyond surgery and variations of hormonal therapy. For instance, immunotherapies that target specific cytokines or immune cells involved in endometriosis are currently under investigation. Other promising areas of research include therapies targeting the altered metabolic environment of endometriosis lesions and neuromodulator treatments aimed at disrupting pain pathways associated with the condition. This article is not intended to cover these future options in depth, but based on all the potential causes and influencing factors it becomes easier to see what is coming sooner than later.
Some recent example animal studies and concepts which should get to human trials include: Targeted anti-inflammatory therapy, antibiotic therapy targeting specific bacteria like Fusobacterium, antibody (AMY109) that binds IL-8, small interfering RNA for VEGF (siVEGF), epigenetic and histone modification targeting endo-related gene transcription including estogen and progesterone receptors, epigenetic modification of T-cell immune response in endo, ARID1A and related “cancer gene” targeting, and more. So, while we do not have these available in clinical practice yet, the research wheels are turning. Certainly, that can be accelerated with more funding, but it is ongoing.
Holistic Proactive Principles
While we await mainstream targeted molecular therapies you should know that the same molecular pathway targets are also influenced by natural integrative approaches . They may not be laser targeted on a specific molecular pathway but that can be a good thing. Abnormal cells like endo know or learn how to work around blockades from therapy and the treatment can stop working. We know that from other diseases where molecular therapies are already quite common. Mother nature has considered that problem, so to speak, and a lot of nutrients can have a synergistic favorable effect on multiple molecular pathways at the same time.
Further, your microbiome, estrobolome, inflammation, oxidation, nutrition, stress, lack of exercise, and so much more, impacts your body on the basis of epigenetics that was introduced above. More specifially, a significant part is related to nutrigenomic epigenetics. This can be through food or well selected supplements and botanicals.
It’s critical to note that this does not mean loading up on the weirdest supplements you never heard of that cost an arm and a leg. The 80/20 rule, which says that you get 80% of your result from 20% of an action, suggests that you can get far with a personalized antioxidant anti-inflammatory diet. This is often simply done via a whole food plant-based diet. Combine this with an exercise plan and stress management and you are 80% of the way there.
Conclusion
Endometriosis is a complex, multifaceted, polygenic and multifactorial disorder, and much remains to be understood about its causes and progression. As our understanding of endometriosis deepens, so too does our ability to develop accurate diagnostics and targeted, effective therapies. But for now, in expert hands and with your own proactive commitment to nutritional and lifestyle options, outcomes can be good to great. There is no disease or condition where everyone gets the benefit of a great outcome, but certainly in the case of endo it can be optimized by seeking out an endometriosis expert. In addition, expert consultants, especially those with integrative or functional medicine training, can take it one step further.
References:
- Endometriosis: Etiology, pathobiology, and therapeutic prospects
- The Main Theories on the Pathogenesis of Endometriosis
- Nutrition in the prevention and treatment of endometriosis: A review
- Cancer-Associated Mutations in Endometriosis without Cancer
Updated Post: July 16, 2024
Genetics of Endometriosis: Understanding the Genetic Links in Endometriosis
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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.
Endometriosis 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.
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.
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.
Empowering the Future: Advancing Diagnosis and Treatment Through Genetic Insights
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:
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.
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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.
Interstitial Cystitis and Endometriosis: Unraveling the Evil Twins Syndrome of Chronic Pelvic Pain
Table of contents
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.
Endo-Fighting Microbiome Optimization: Research-based Tips
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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
Understanding Fatigue and Endometriosis: A Practical No-Nonsense Guide
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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.
Endometriosis in Teens – What You Need to Know
Adolescence is a transformative phase marked by physical and emotional changes, but for some young individuals, this journey is overshadowed by a debilitating condition known as endometriosis.
Endometriosis is a painful and often misunderstood and misdiagnosed condition that affects 1 in 10 individuals assigned female at birth (AFAB) most commonly (but not exclusively) between the ages of 15-50. Teen endometriosis is a silent struggle that demands greater awareness and prompt intervention. This condition can be particularly difficult, as they are just beginning to navigate the world of menstrual health. Knowing the signs and symptoms of endometriosis from parents and schools and looking for endometriosis specialists for teens can help them get the treatment they need and make it easier to manage their pain.
Table of contents
What is Endometriosis in Teens?
Endometriosis is when cells similar to the lining of the uterus (endometrium) grow outside the uterus onto tissues and organs, in the abdomen, pelvis, and even distant sites such as the lungs or diaphragm. These endometriosis lesions behave similarly to the endometrium in some ways, but there are some distinct differences. They produce substances that promote inflammation, pain, and tissue scarring, making it difficult for some women to become pregnant. They can also produce their own estrogen via aromatase. Symptoms vary from mild to severe, including pelvic pain during menstruation, heavy periods, pain during intercourse, gastrointestinal issues like cramps or diarrhea, fatigue, and more.
While endometriosis can affect individuals of any age, its onset often traces back to adolescence, with a staggering 38% of those diagnosed reporting symptoms before the age of 15. Despite its prevalence, the journey to an accurate diagnosis can be arduous, with an average delay of over nine years from the onset of symptoms.
Symptoms: Unveiling the Silent Struggle
The symptoms of endometriosis in teens can be diverse and perplexing, often leading to misdiagnosis or dismissal as “normal menstrual cramps.” However, these symptoms should not be ignored, as they can significantly impact a young woman’s quality of life and development.
Common Symptoms of Teen Endometriosis:
- Severe, debilitating menstrual cramps: Unlike typical menstrual discomfort, endometriosis-related cramps are often resistant to over-the-counter pain medications and can persist throughout the entire menstrual cycle.
- Heavy or irregular periods: Abnormal bleeding patterns, such as heavy menstrual flow or spotting between periods, can be indicators of endometriosis.
- Pelvic or lower abdominal pain: Endometriosis can cause chronic pelvic or lower abdominal pain that may worsen during menstruation or intercourse.
- Gastrointestinal distress: Nausea, constipation, diarrhea, and painful bowel movements can accompany endometriosis due to the proximity of endometrial lesions to the digestive tract.
- Urinary issues: Endometriosis can lead to painful urination, frequent urination, or blood in the urine.
- Fatigue and mood changes: The constant pain and hormonal fluctuations associated with endometriosis can contribute to fatigue, irritability, and mood swings.
While these symptoms may initially be dismissed as normal adolescent experiences, their persistence and severity should prompt further investigation.
Diagnosing Endometriosis in Teens
Diagnosing endometriosis in teens can be a complex and frustrating process, often involving multiple healthcare providers and misdiagnoses. It can be tricky because its symptoms may resemble normal period discomfort, ovarian cysts, or uterine fibroids. If a teen experiences any of these symptoms, taking them seriously and seeking medical attention is essential.
The doctor may perform a pelvic exam or an ultrasound to look for signs of endometriosis deposits on other organs. The only definitive way to diagnose endometriosis is through a minimally invasive surgical procedure called laparoscopy, which allows the doctor to visually inspect the pelvic region and obtain tissue samples for biopsy.
However, before undergoing laparoscopy, healthcare providers may recommend various diagnostic steps, including:
- Detailed medical history: A comprehensive review of symptoms, family history, and menstrual patterns can provide valuable insights.
- Pelvic examination: While not definitive, a pelvic exam can help identify potential sources of pain or abnormalities.
- Imaging tests: Ultrasounds or magnetic resonance imaging (MRI) may be used to rule out other conditions or detect endometrial cysts (endometriomas).
- Hormone therapy trial: Prescribing hormonal birth control or medications that suppress ovulation can help determine if symptoms improve, this may suggest the presence of endometriosis but is not definitive as a significant number of individuals with endometriosis do not respond to hormonal contraceptives for symptom management.
It’s important to note that endometriosis lesions in teens can have an atypical appearance, making visual diagnosis during laparoscopy challenging. Therefore, seeking care from a gynecologist experienced in diagnosing and treating endometriosis in adolescents is crucial.
Treatment Options & Endometriosis Specialist for Teens
While endometriosis has no cure, various treatment approaches can effectively manage symptoms and improve the quality of life for teens with the condition. Once a teen is suspected of having endometriosis, several treatment options are available, depending on their individual needs. A multidisciplinary team, including gynecologists, pain management specialists, physical therapists, and mental health professionals, may be involved in developing a comprehensive treatment plan. Common treatment options for teen endometriosis include:
- Hormonal therapies: Hormonal birth control pills, progestin-only medications, or hormonal intrauterine devices (IUDs) can help suppress menstruation and help with symptom management.
- Pain management: Over-the-counter or prescription pain medications, as well as alternative therapies like acupuncture or massage, can help alleviate chronic pain associated with endometriosis.
- Surgery: Minimally invasive laparoscopic surgery may be recommended to remove endometriosis lesions and adhesions; however, surgery for this population is a bit controversial because of the young age and chance of recurrence of endometriosis.
- Physical therapy: Pelvic floor physical therapy can help relax pelvic muscles, reduce pain, and improve overall function.
- Psychological support: Counseling or support groups can assist teens in coping with the emotional and social impacts of endometriosis.
The treatment approach should be tailored to the individual’s symptoms, severity, and personal preferences, with ongoing monitoring and adjustments as necessary.
Fertility Preservation: Safeguarding Future Possibilities
While endometriosis is not directly linked to infertility in teens, the condition can progress and potentially impact future fertility if left untreated. As endometriosis lesions and adhesions accumulate over time, they can distort pelvic anatomy, block fallopian tubes, or impair ovarian function, making conception more difficult.
For this reason, early diagnosis and treatment of endometriosis in adolescence are crucial for preserving fertility potential. Additionally, some endometriosis clinics offer fertility preservation services, such as egg or embryo freezing, for teens who may undergo treatments that could temporarily or permanently impact their fertility.
By addressing endometriosis early and proactively considering fertility preservation options, young women can take control of their reproductive health and increase their chances of conceiving in the future.
Empowering Teens: Advocacy and Support
Endometriosis can be an isolating and misunderstood condition, particularly for teens who may feel alone in their struggle. However, several organizations and support networks have emerged to empower young women and raise awareness about teen endometriosis.
Organizations like the Endometriosis Association and the World Endometriosis Research Foundation provide valuable resources, including educational materials, online support communities, and advocacy initiatives. These platforms offer teens and their families a space to connect, share experiences, and access reliable information about endometriosis.
Additionally, some endometriosis clinics and advocacy groups encourage teens to become advocates themselves, sharing their stories, and raising awareness within their communities. By breaking the silence surrounding endometriosis, these young advocates can inspire others to seek help and foster a more inclusive and supportive environment for those affected by the condition.
Igniting Hope and Empowerment
Endometriosis is a complex condition that affects many people throughout their lives, but teens especially need extra care due to their developing bodies and hormones. Endometriosis in teens is a silent struggle that demands greater awareness, understanding, and action.
Knowing the symptoms, seeking early diagnosis and treatment, and embracing a multidisciplinary approach, teens don’t have to suffer needlessly from this often debilitating condition any longer than necessary! With proper care and support, they can manage their condition and live abundantly despite endometriosis!
Through the combined efforts of healthcare providers, researchers, advocacy groups, and the endometriosis community itself, we can ignite hope and empowerment for teens affected by this condition. By breaking the silence and fostering a supportive environment, we can ensure that no young person feels alone in her battle against endometriosis. Together, we can unveil the silent struggle and pave the way for a future where endometriosis no longer defines the lives of those affected but rather serves as a testament to their resilience and strength.
REFERENCES
https://www.childrensmercy.org/departments-and-clinics/gynecology/endometriosis-in-teens
https://www.yalemedicine.org/news/teens-endometriosis
https://www.medicalnewstoday.com/articles/endometriosis-in-teens
https://willowobgyn.com/blog/endometriosis-in-teens-what-you-need-to-know
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4432718/
Updated Post: August 7, 2024
The Different Tests Used to Diagnose Endometriosis
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Endometriosis is a chronic condition characterized by the growth of endometrial-like tissue, which is found throughout the body, primarily in the abdominopelvic cavity, and affects an estimated 176 million women globally. While its exact causes remain elusive, this disorder can inflict debilitating pelvic pain, dysmenorrhea, dyspareunia, and even infertility on those afflicted. However, the path to an accurate diagnosis can be arduous, often spanning years due to the condition’s elusive nature and the lack of a definitive, non-invasive test. In this comprehensive guide, we’ll unravel the complexities of diagnosing endometriosis, exploring the various tests and imaging techniques employed by healthcare professionals to identify this enigmatic condition.
Understanding the Diagnostic Challenges
Endometriosis presents a diagnostic conundrum, as its symptoms can mimic those of other conditions, such as irritable bowel syndrome, interstitial cystitis, or fibromyalgia. Moreover, the severity of symptoms often bears little correlation with the extent of the disease, further compounding the diagnostic challenge. Some women with minimal endometriosis may experience excruciating pain, while others with advanced stages may remain asymptomatic. This unpredictable nature underscores the importance of a multi-faceted diagnostic approach, combining clinical evaluation, imaging techniques, and, in some cases, surgical intervention.
The Importance of Early Diagnosis
Prompt diagnosis is crucial for effective management of endometriosis, as the condition can progress over time, potentially exacerbating symptoms and increasing the risk of infertility. Early intervention can help mitigate long-term impacts, improve quality of life, and enhance fertility outcomes. However, the diagnostic journey can be prolonged, with an average delay of 7 to 10 years from the onset of symptoms, owing to factors such as lack of awareness, normalization of menstrual pain, and the absence of a definitive non-invasive test.
The Role of Clinical Evaluation
The diagnostic process typically commences with a comprehensive clinical evaluation, encompassing a detailed medical history and physical examination. Healthcare providers will inquire about the nature, timing, and severity of symptoms, such as pelvic pain, dysmenorrhea, dyspareunia, and abnormal bleeding patterns. A pelvic exam may reveal signs of endometriosis, such as pelvic masses, nodules, or scarring, although the absence of these findings does not necessarily rule out the condition. They may also order blood work to check hormone levels and screen for other conditions with similar symptoms.
Imaging Techniques for Endometriosis Diagnosis
While there have been significant improvements in imaging modalities in recent years, most imaging techniques implemented currently cannot definitively diagnose endometriosis. However, they do currently play a crucial role in identifying specific manifestations of the disease and guiding treatment strategies.
Transvaginal Ultrasound
Transvaginal ultrasound (TVUS) is a widely accessible and non-invasive imaging technique that can detect ovarian endometriomas (chocolate cysts) and deep infiltrating endometriotic (DIE) nodules or adhesions. Most people will receive a basic ultrasound, While a basic ultrasound may be able to detect endometriomas and DIE, it lacks efficacy in identifying superficial peritoneal implants. Research focusing on the use of advanced ultrasound shows promise in better detection and earlier diagnosis of endometriosis. Until more providers are trained and routinely use advanced ultrasound, the accuracy of TVUS in diagnosing endometriosis remains limited and highly dependent on the operator’s expertise and experience.
Magnetic Resonance Imaging (MRI)
MRI is particularly valuable in assessing the extent and location of deep infiltrating endometriosis, as well as identifying endometriotic lesions in atypical locations, such as the bladder, ureters, or rectosigmoid region. While more expensive and less readily available than ultrasound, MRI can provide detailed information to aid surgical planning and ensure the involvement of appropriate specialists, if necessary. Similar to TVUS, the ability of the MRI to identify endometriosis also relies on the experience and expertise of the technician taking the images, and the radiologist reading them.
The Gold Standard: Laparoscopic Surgery
Despite advancements in imaging techniques, laparoscopic surgery remains the gold standard for definitive diagnosis of endometriosis. During this minimally invasive procedure, a surgeon inserts a laparoscope (a thin, lighted instrument) through a small incision in the abdomen, allowing direct visualization of the pelvic organs and potential endometriotic lesions. Tissue samples can be obtained for histological confirmation, providing a definitive diagnosis. Laparoscopies are performed under general anesthesia, so you will not feel anything during the procedure. Laparoscopy not only serves a diagnostic purpose but also offers the opportunity for simultaneous surgical treatment, with excision being the preferred method to remove endometriosis lesions.
Endometriosis can be hard to diagnose because its symptoms are often very similar to other conditions, such as period discomfort, ovarian cysts, or pelvic inflammatory disease. If you think you have endometriosis, you must talk to your doctor as soon as possible so they can determine what type of testing is right for you and how best to treat it. Working with the right healthcare provider ensures you receive the best care possible for managing your condition and improving your overall quality of life.
Comprehensive Management: Beyond Diagnosis
Endometriosis management often requires a multidisciplinary approach, combining medical and surgical interventions tailored to individual circumstances. While surgery is currently the only treatment to address the lesions, several options are recommended for addressing other pain generators and for symptom management, including:
- Nonsteroidal anti-inflammatory drugs (NSAIDs) and hormonal contraceptives for pain management
- Gonadotropin-releasing hormone (GnRH) agonists or antagonists to suppress ovarian function
- Progestin therapy to inhibit lesion growth
- Pelvic floor physical therapy to address the myofascial components of pelvic pain and the secondary impact of the endometriosis lesions
- Complementary and alternative medicine such as acupuncture and functional or integrative medicine
- Dietary and lifestyle changes
- Psychological support and mental health support
Effective management of endometriosis and the impact of living with endometriosis involves addressing all of the pain generators and associated conditions. A comprehensive approach, incorporating a multidisciplinary approach can significantly improve the overall quality of life for those affected by this challenging condition.
Emerging Diagnostic Approaches
Researchers are actively exploring novel, non-invasive diagnostic methods for endometriosis to reduce the reliance on surgery and improve early detection. One promising area of investigation involves the analysis of endometrial nerve fibers, as studies have shown an increased density of nerve fibers in the endometrium of women with endometriosis compared to those without the condition.
Additionally, researchers are evaluating the potential of serum biomarkers or panels of biomarkers to aid in the diagnosis of endometriosis. While no single biomarker has proven sufficiently accurate thus far, ongoing research aims to identify combinations of markers that can reliably detect the presence and severity of the disease. Other research has focused on better understanding the nature of the disease and factors involved in the mediation of it, including genetics and the influence of the microbiome.
References:
https://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/drc-20354661
https://www.nichd.nih.gov/health/topics/endometri/conditioninfo/diagnose
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2880548
https://www.advancedgynaecologymelbourne.com.au/endometriosis/diagnosis
https://www.webmd.com/women/endometriosis/do-i-have-endometriosis
Updated: September 5, 2024
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.
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Types of Surgery for Endometriosis
Several types of surgeries exist to treat endometriosis, including minimally invasive (laparoscopy or robotics) and open surgery (laparotomy.) Minimally invasive surgery typically involves making small incisions in the abdomen so that a camera can be inserted into the body to view abnormal endometriosis growths or lesions. Laparotomy involves a larger incision and allows for more extensive examination and treatment. Almost all top endometriosis surgeons worldwide prefer minimally invasive surgery vs. open surgery.
Risks Associated With Endometriosis Surgery
As with any surgery, there are risks associated with endometriosis surgery. These include bleeding, infection, and nerve damage due to surgery or anesthesia during the procedure. During surgical procedures, there is also a risk of harm to surrounding organs such as the bladder or bowels. Additionally, there is a risk that a surgeon will not remove all of the endometriosis tissue during surgery. This incomplete removal could lead to recurrent symptoms or disease if not appropriately addressed by your doctor post-surgery.
Other Treatment Options for Endometriosis
Suppose you are concerned about undergoing surgery for your endometriosis. In that case, other treatment options are available such as hormone therapy or medications used to reduce pain and inflammation caused by endometrial growths or lesions. Additionally, lifestyle changes such as exercise and diet might help reduce endometriosis’s associated symptoms without requiring surgery. Speak with your doctor about other options that may work best for you before deciding on any procedure related to your endometriosis diagnosis.
Find the best endometriosis specialists around the world:
Why was iCareBetter Built?
A message from Dr. Saeid Gholami, the founder and CEO at iCareBetter:
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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.
What Are The Cost Drivers For Running iCareBetter?
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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.
Pelvic floor dysfunction
Another condition that can have overlapping symptoms with endometriosis is pelvic floor dysfunction (PFD). PFD involves abnormal functioning of the pelvic floor muscles (Grimes & Stratton, 2020). The muscles can be too tight (hypertonia), too lax (hypotonia), or just not coordinate appropriately (Grimes & Stratton, 2020). Fraga et al. (2021) reports that those with deep infiltrating endometriosis (DIE) had higher pelvic floor hypertonia, weaker muscle contraction, and inability to completely relax the pelvic floor muscles. They also noted shortening of the anterior thigh, piriformis, and iliotibial band muscles (Fraga et al., 2021). PFD can be seen frequently in those with endometriosis “even after surgical excision of the endometriosis lesions” (Hunt, 2019).
Shrikhande (2020) reports:
“The presence of endometriosis in the pelvis can cause a secondary chronic guarding of pelvic floor musculature. This chronic guarding state leads to nonrelaxing pelvic floor dysfunction and myofascial trigger points (MTrPs)…. The pelvic floor muscles in nonrelaxing pelvic floor dysfunction are short, spastic, weaker and poorly coordinated…. Myofascial trigger points (MTrPs) are short contracted taut bands of skeletal muscle that often co-exist with nonrelaxing pelvic floor dysfunction… Once formed, MTrPs can become a self-sustaining source of pain even after the endometriosis has been excised. Active MTrPs serve as a source of ongoing nociception; they can decrease pain thresholds, upregulate visceral and referred pain patterns, and sensitize the nervous system contributing to both peripheral and central sensitization. Therefore, it is important to treat a hypertonic nonrelaxing pelvic floor and associated MTrPs in endometriosis patients.”
For more information see: https://icarebetter.com/pelvic-floor-dysfunction
References
Fraga, M. V., Oliveira Brito, L. G., Yela, D. A., de Mira, T. A., & Benetti‐Pinto, C. L. (2021). Pelvic floor muscle dysfunctions in women with deep infiltrative endometriosis: An underestimated association. International Journal of Clinical Practice, 75(8), e14350. DOI: 10.1111/ijcp.14350
Grimes, W. R., & Stratton, M. (2020). Pelvic floor dysfunction. https://www.ncbi.nlm.nih.gov/books/NBK559246/
Hunt, J. B. (2019). Pelvic Physical Therapy for Chronic Pain and Dysfunction Following Laparoscopic Excision of Endometriosis: Case Report. Internet Journal of Allied Health Sciences and Practice, 17(3), 10. Retrieved from https://nsuworks.nova.edu/cgi/viewcontent.cgi?article=1684&context=ijahsp
Shrikhande, A. A. (2020). The consideration of endometriosis in women with persistent gastrointestinal symptoms and a novel neuromusculoskeletal treatment approach. Archives of Gastroenterology Research, 1(3). https://www.scientificarchives.com/article/the-consideration-of-endometriosis-in-women-with-persistent-gastrointestinal-symptoms-and-a-novel-neuromusculoskeletal-treatment-approach
