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How to Treat Deep Infiltrating Endometriosis

Endometriosis, bad enough when endometrial-like cells grow outside the uterus and on the surface of other organs, has an even more troubling variant called Deep-Infiltrating Endometriosis (DIE).  This is a severe form of endometriosis defined by these abnormal cells burrowing or invading deeper into tissues and affected organs, like the bowel and bladder.  Generally, the depth cutoff to fit this category is more than 5mm below the tissue surface.  This guide will shed some light on how we treat and potentially cure deep infiltrating endometriosis in the future. At this time, a long-standing cure is still a stretch, even for superficial endometriosis.  

Understanding Deep Infiltrating Endometriosis

The good news is that this condition is relatively rare, affecting only about 1% of women of reproductive age and only 20% of those with endometriosis.  The bad news is that molecular data suggests it may be a premalignant disease, along with endometrioma type. However, this is still undergoing research, and the malignancy potential remains low.  However, when genetic mutations are shared with an aggressive disease like cancer, this may help explain why endometrioma and DIE types of endo are more likely to cause more local anatomic distortion and harm with pain and subfertility impact, as well as increased metastatic potential (i.e., spread to other parts of the body even if there is no associated cancer). 

Anatomic Comparison of Endometriosis Types

Based on the anatomical location of endometriosis within the pelvic and abdominal cavities, there are three major types of endo:

  • Superficial endometriosis (Peritoneal endometriosis or PEM): Lesions appear on the surface of organs outside the endometrium. Generally, but not always, they cause the least amount of tissue damage and distortion. 
  • Ovarian endometriomas (OE): Dark cysts due to old collected blood, also called chocolate cysts, develop in or on the ovaries due to endometriosis.
  • Deep infiltrating endometriosis: The most severe form, where the endometrial-like tissue invades deeper into the pelvic organs, wreaking more havoc.

Anatomic locations and clinical degree of disease form the basis for most of the staging systems that are currently used.  This is extremely “old school,” and we are about to step into a new age where molecular insights will help with diagnostics and treatment options because abnormal molecular pathways can be targeted with precision therapies.  

Molecular Comparison of Endometriosis Types

This is an evolving hot topic of research in endometriosis, which goes well beyond comparisons based on hormonal factors like receptor activity, up and down-regulation, and relative progesterone resistance.  It is too early to classify different types of endo by this gene mutation molecular pathway metric, but what is known so far might already help with recurrence and cancer risk mitigation.

What we know is as follows:

  • Endometriosis overall (PEM, OE, and DIE types) is a disease of genetic and molecular heterogeneity,  meaning multiple genes are affected. Some of these are mutations exactly like those found in cancer, even if no cancer is present or even destined to develop. This means endo may not be one disease entity between different individuals but rather different ones with varying degrees of aggressiveness. On the other hand, in any given individual, there is research data to support “clonal” molecular signature similarities between all three types of endo, meaning one type (e.g., PEM) advances or progresses to the other (OE or DIE).  
  • Mutations of interest include ARID1A, PIK3CA, KRAS, and PPP2R1A, among others
  • Endometrioma type carries the highest risk of malignant degeneration, and ARID1A is considered to be one of the most important driver mutations to clear cell cancer.  
  • DIE type has a wider range of mutations and is at a lower risk of malignant degeneration, but these mutations may contribute to its more aggressive behavior. 
  • OE-type risk for malignant degeneration may be higher than that for DIE because the molecular micro-environment differs between these two, with the ovaries possibly being more “permissive” to malignant changes.  This does not negate the aggressive, invasive, and potentially metastatic nature of DIE in the absence of cancer. 
  • Gene mutation expression varies based on epigenetic influences, including diet, lifestyle, toxin exposure, concurrent disease states, mind-body influence, etc. 

What does this all mean in summary?  Multiple genes are mutated in endometriosis, some of which may or may not lead to a low risk of cancer development but can dictate how aggressive endo types, especially DIE and OE,  can be in an individual.  These gene mutations can be suppressed or aggravated by epigenetic influences that you have some control over.  Evolving research is helping uncover diagnostic and prescription molecular treatment options based on all of this.   

Identifying Symptoms of Deep Infiltrating Endometriosis

The symptoms of DIE are similar to general endometriosis but usually more severe. They may include:

  • Severe pelvic pain
  • Painful urination (dysuria) of bleeding in the urine (hematuria)
  • Painful menstruation (dysmenorrhea)
  • Genital pain before, during, or after sex (dyspareunia)
  • Digestive discomfort and rectal bleeding
  • Distant symptoms like pain with breathing, related to possible diaphragm involvement

Causes and Risk Factors of Deep Infiltrating Endometriosis

Notwithstanding recent research advances, the exact cause of endometriosis, including DIE, is unknown.  A family history of endo and/or cancer are important to consider.  It is not likely that a single cause will be uncovered because of the probable multifactorial nature of endo.  However, molecular research is taking this to a different level. 

Diagnosing Deep Infiltrating Endometriosis

Since deep infiltrating endometriosis is an advanced form of endometriosis, its diagnosis can be challenging. Usually, multiple diagnostics are used, including medical history, physical examination, histological examination after surgery or upon biopsy (e.g., C-section scar endo), minimally invasive surgery, ultrasound, and MRI.  A 3-Tesla (“3T” for short) MRI is probably the most accurate modality, but it still has many shortcomings.  In other words, it can be helpful in planning for surgery but should not be used to determine definitively if DIE is present or not. It is as good as it gets but is imperfect, missing up to 20% of DIE. 

In many, if not most, cases, the diagnosis will only be apparent and confirmed at the time of surgery.  Since it is impossible to accurately predict the full extent of endo before surgery, this is the main reason that it is very prudent to pick the most skilled and experienced surgeon you can find. The more symptomatic you are, the more this is critical to your success. A botched surgery does not make it easier the second time around, and it exposes you to an increased risk of major complications.  

Treatment Options for Deep Infiltrating Endometriosis

Medical Treatments

Medical treatments for DIE are extremely limited and basically non-existent.  This is because the deep invasive infiltration of disease leads to scarring or fibrosis as your body tries to “wall off” or isolate  this disease and heal.  Any known medication cannot eliminate fibrosis.  What we are left with are pain relievers and hormonal options that are used in all forms of endo, for symptomatic relief and possibly some suppressive effect.

Integrative options are also an option for symptomatic relief, just as they are for any type of endo.  This includes mind-body-based biofeedback, nutrition, botanicals, essential oils, acupuncture and acupressure, electrical stimulation (TENS), etc.  It is best to formulate an integrative strategy with a relevant practitioner.  

Pelvic floor physical therapy (PFPT) is, of course, central to a treatment plan as well.  However, depending on lesion location, this should be undertaken with some caution due to possible disruption of deep lesions with internal therapies, making surgery potentially less effective.  A teamwork approach should be conducted to evaluate the best strategy.  

Surgical Treatments

Surgical excision of DIE lesions and associated fibrosis is by far the best path forward in most cases where DIE is anticipated and/or already diagnosed from prior surgery.  The usual admonitions of excision superiority over ablation are even more critical here because ablation or fulguration is totally useless for lesions of uncertain depth. Also, with ablation, there is an elevated risk of damaging tissues like the rectum, bladder, and ureters. 

A master surgeon is best equipped for DIE, and, in the author’s opinion, these types of cases should be performed robotically because of the far superior optics and wristed robotic instruments.  Further, the surgeon should either be able to handle bowel, bladder, and ureters, including reimplantation where required, or have a well-integrated team ready to participate in a planned fashion.  The problem is that it is hard to tell what will be required before surgery. Still, the best efforts through imaging-based mapping and attention to symptoms should be made to adequately prepare for resection/excision of anything found.   

DIE most definitely does not mean an automatic hysterectomy recommendation.  However, if childbearing is complete, this may need to be discussed for risk vs. benefit to remove all diseased tissue.  Similarly, the closer to menopause, the more disease and the higher the risk of malignancy due to family history or genetic testing, the more it is prudent to talk about the risk vs. benefit of ovarian conservation.  This should be highly individualized and thoroughly discussed for the best outcome. 

Considerations in Surgical Management

Indocyanine Green (ICG) Fluorescence

Indocyanine green (ICG) fluorescence imaging allows surgeons to visualize the details of the ureters and safely remove the maximum amount of infiltrating endometrial tissue without damaging the urinary tract.  It is also helpful to determine if a bowel segment that has been operated upon retains good blood supply and viability.  This helps avoid complications.  

Stenting During Partial Cystectomy or Ureteral Reimplantation

During bladder surgery for urinary endometriosis, surgeons can place stents (tiny plastic catheters) to help protect the ureters (the delicate tubes through which urine travels from the kidneys to the bladder) from further damage or to enhance healing after reimplantation.  

Pathology Evaluation

Other than standard pathology evaluation, research evidence suggests several newer assessments might be considered in DIE and OE.  Specifically, the more the disease looks clinically aggressive, the more the pathologist should ensure that there is no clear cell cancer component.  Beyond that, even with no evidence of cancer, the tissue specimens removed can be assessed for “mitotic index,” meaning whether the pathologist sees many dividing cells.  This is more often seen in aggressive disease, even in the absence of cancer.  This, in turn, may lead to consideration of some degree of well-tolerated hormone suppression (e.g., micronized progesterone) to potentially reduce recurrence risk. Finally, there are immunohistochemical (IHC) stains for some molecular abnormalities that gene mutations can spawn (e.g., ARID1A).  This is not readily available but can be considered, especially in a situation where cancer risk is elevated.  In the future, as discussed above, these aberrant molecular pathways will be targeted with precision therapies.  

Endometriosis and Fertility

Endometriosis, including DIE, can impact fertility. Consequently, surgeons should employ as many atraumatic surgical techniques as possible to avoid injuring delicate structures in the reproductive system and improve the chances of pregnancy.  This is optimized with the robotics platform. 

Conclusion

Deep infiltrating endometriosis adds a layer of complexity to the management of endo.  Surgery is the optimal therapy, followed by supportive care and strategies to mitigate recurrence if possible. Malignant degeneration is uncommon but possible, which means that, especially with a family history of cancer, genetics testing should be considered.  The more complex, the more the need for an endometriosis expert master surgeon in your corner. If the cancer risk is elevated for any of the reasons noted in this article, a gynecologic oncologist should be considered at least as a consultant.  

References:

The Diagnosis and Treatment of Deep Infiltrating Endometriosis

Molecular analysis suggests oligoclonality and metastasis of endometriosis lesions across anatomically defined subtypes – ScienceDirect

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How Common is Infertility with Endometriosis

Endometriosis, a medical condition affecting women globally, often poses a significant question:

how common is infertility with endometriosis? This article aims to shed light on this critical question, discussing endometriosis and its relationship with fertility issues, the possible causes and treatments, and the hope that exists for women battling both endometriosis and infertility.

Understanding Endometriosis

Endometriosis is a chronic disorder characterized by the growth of endometrial-like tissue (the lining of the uterus) outside the uterus, inducing a chronic inflammatory reaction. This misplaced tissue can be found on the ovaries, fallopian tubes, and even on the bladder or intestines. The growths can lead to complications, including the formation of scar tissue and cysts, causing pain and potentially affecting fertility.

Read More: Can Endometriosis Be Treated Without Surgery? – Endometriosis Supportive Therapy

Prevalence of Endometriosis

Endometriosis affects an estimated 10–15% of women between 15-50. However, the prevalence dramatically rises to about 25%–50% in women with infertility. Despite the well-supported association between endometriosis and infertility, a causal relationship is yet to be definitively established.

Endometriosis and Infertility: The Connection

Endometriosis can impact fertility in multiple ways, leading to the following complications:

  • Impact on Gametes and Embryos: The increased number of inflammatory cells in the peritoneal fluid of women with endometriosis can damage the oocytes (eggs) and sperm and even have toxic effects on the embryo.
  • Impairment of Fallopian Tubes and Ovarian Function: Endometriosis can lead to pelvic adhesions, blocked fallopian tubes, and damaged ovaries, which can hinder the process of ovulation and egg release, thus affecting fertility.
  • Endometrial Receptivity: The chronic inflammatory state induced by endometriosis can impair endometrial receptivity, affecting the implantation of a pregnancy.

Read More: Can Minimal Endometriosis Cause Infertility

Endometriosis-Associated Infertility: Treatment Approaches

The treatment for endometriosis-associated infertility usually involves a combination of medical and surgical interventions. The choice of treatment depends on several factors, including the age of the woman, the severity of the symptoms, the desire for pregnancy, and the extent of the disease.

Medical Treatment

Medical treatments for endometriosis aim to suppress the growth of endometriosis tissue and relieve symptoms. These treatments include hormonal therapies such as birth control pills, gonadotropin-releasing hormone (GnRH) agonists, and progestins. However, these treatments do not improve fertility rates and are typically used to alleviate pain and other symptoms. They are temporary solutions.

Surgical Treatment

Surgical treatment aims to remove endometrial tissue and restore normal pelvic anatomy. Surgical options include laparoscopy, a minimally invasive procedure. Studies have shown that surgical treatment can improve fertility rates, especially in women with severe endometriosis.

Assisted Reproductive Technology (ART)

In cases where medical and surgical treatments are unsuccessful, assisted reproductive technologies (ART) such as in vitro fertilization (IVF) may be considered. IVF involves the extraction of eggs from the ovaries, which are then fertilized with sperm in a laboratory. The resulting embryos are then transferred back into the uterus.

The Hope for Women with Endometriosis and Infertility

Despite the challenges posed by endometriosis, it’s crucial for women to know that having this condition does not necessarily mean they cannot get pregnant. With the right treatment approach, many women with endometriosis can successfully conceive and carry a pregnancy to term.

In conclusion, understanding how common infertility is with endometriosis is essential for providing effective treatment and support to women dealing with this condition. While endometriosis can indeed impact fertility, it’s important to remember that it’s not the end of the road. With advances in medical technology and treatments, many women with endometriosis are able to overcome their fertility challenges and fulfill their dreams of motherhood.

Read More: Life After Endometriosis Surgery: A Comprehensive Guide

References:

https://www.pennmedicine.org/updates/blogs/fertility-blog/2016/august/endometriosis-and-fertility

https://www.reproductivefacts.org/news-and-publications/fact-sheets-and-infographics/endometriosis-does-it-cause-infertility/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3538128/

https://www.frontiersin.org/articles/10.3389/fsurg.2014.00024

https://obgyn.onlinelibrary.wiley.com/doi/10.1111/aogs.13082

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Endometriosis Treatment: Can Endometriosis Be Treated Without Surgery?

Endometriosis is an extremely painful chronic condition, which often also leads to infertility or subfertility, that affects about 10 percent of women worldwide. It is characterized by growth of endometrial-like tissue, which normally lines the inside of the uterus, outside of the uterus on pelvic organs, the abdomen, bowel, and beyond. This tissue is not the same as the endometrium, characterized by very different behavior and unique molecular profiles.  

Eventually, personalized “theranostic” (therapy and diagnostic) tools will exploit these unique molecular profiles and lead to far better diagnosis, therapy and monitoring approaches.  Research is accelerating in this area, which is already very pervasive in other diseases such as cancer and various immuno-inflammatory conditions.   Meanwhile, the only therapies that are available to actually treat endometriosis, not just the symptoms, are purported to be hormonal options and excisional surgery.  However, there are major limitations to the argument that hormonal therapies actually work very well to treat endo rather than simply reduce symptoms.  

Thus, in a word, “can endometriosis be treated without surgery?”, the answer is a resounding NO !  That is not to say that hormonal and other treatments, mainstream and integrative-holistic, can’t help make your life better. They can.  Let’s unpack this a little bit to give you a roadmap of the options.  

Understanding Endometriosis

The exact cause of endometriosis is technically unknown, but we know it is influenced by genetic, genomic, hormonal, immunologic and environmental epigenetic factors.  In other words, it is “multi-factorial”. This means the reason you may have endo could be different from why your friend or even your sister does.  Endo can also behave very differently because different factors are probably in play in different people. This makes a “standard treatment” hard, if not impossible, to recommend to any given patient.  This is changing with the advent of endometriosis bio-molecular pathway research, which will lead to highly individualized targeted treatments. But this is not part of what is available today. 

Diagnosis of Endometriosis

Diagnosing endometriosis is very challenging, because the symptoms can mimic other conditions. This is part of the reason that diagnosis is often delayed by 5-10 years and intentional or inadvertent gaslighting is rampant, depending on which specialist was consulted.  The doctor may be looking at you through a general practice medical lens, or intestinal, urologic, neurologic or other lenses in forming their opinions.   

Rule # 1 is to listen to the patient.  This is almost never done to an appropriate extent.  Why? Because today’s medical system limitations often lead to five to ten minute visits with a semi-interested and overworked provider who is likely under-informed regarding endometriosis.  

When rule #1 is broken, an appropriate evaluation and testing is not likely to be done. Ideally, a clinical suspicion leads to testing that may include ultrasound or MRI, various blood tests, testing for associated conditions and so on.  None of these will reliably lead to a diagnosis of endo but can lead to appropriate specialist referrals to get to the root cause of pain, such as endo. 

Rule #2 in medicine, in general, is to get a diagnosis before recommending treatment.  This is because treatments can be ineffective when treating the wrong condition or, worse, can lead to complications and side effects.  Unfortunately, in the author’s strong opinion, this is often violated specifically in endometriosis treatment.  A common standard is to offer hormonal therapy to patients to see if it might work because the diagnosis might be endometriosis and endo is, in part, fueled by hormones. This may or may not be reasonable depending upon individual circumstances and choices. 

This brings us to rule #3, that we’ll cover next, which proposes that patients should be offered treatment options to select from after informed consent about the potential risks vs the potential benefits based on the best possible scientific evidence.  This is not always done very well and certainly depends on the “trust factor” with your selected specialist(s), since scientific evidence is subject to interpretation.  Most patients do not realize this.    

Conventional Treatment of Endometriosis

Traditional treatment for endometriosis often involves medication or surgery. Medications can include pain relievers and hormonal therapies.  In the near future medications will include targeted biomolecular non-hormonal therapies, but they are not here yet.  Pain relievers are obviously a symptom reducing band-aid and are not intended to treat, so we will not discuss them here either.  They can certainly help in overall management but we will focus on “treatment” in this article.  

Hormones aim to either shut down ovarian function (in other words, cut off estrogen) or at least regulate the menstrual cycle, and progesterone analogs, to potentially reduce the growth of endometriosis tissue. 

Surgery is used for definitive diagnosis of endo as well as treatment by removing any lesions or implants that are found.  In some cases the two modalities can be used hand in hand, but the order in which they are used and the nature of the proposed hormonal therapy are important considerations.  

Hormonal Treatment

International guidelines are very confusing and inconsistent regarding hormonal therapy. Because of this, recommendations can vary between practitioners.  We won’t delve into all of these options here but the following are excellent summary articles on this important topic. 

Read More: Endometriosis Guidelines: A Closer Look at a Potential Source of Confusion in Treatment Debates

The important points to consider are as follows:

  1. The ONLY way currently to definitively diagnose endometriosis is through biopsy, usually performed during surgery.
  2. Starting treatment that can cause extreme side effects and potential long-term harm without first getting a definitive diagnosis seems imprudent.  So, if a practitioner offers hormones because they “think” you have endo based on history, examination and perhaps some scans, at least get a second opinion from an endometriosis specialist.  This approach is within international guidelines but can cause you a world of misery and potential harm if not managed in expert hands. 
  3. Hormone therapy for endo boils down to either reducing or eliminating estrogen, or increasing progestational agent levels to try to medically eliminate endo lesions.  
  4. Endometriosis cells differ from endometrial cells that are found in the uterus by being relatively resistant to synthetic progestin or natural micronized progesterone therapy. 
  5. Hormonal therapy is known to reduce pain when endometriosis is the cause. However, studies have shown that it fails to actually retard the growth of endometriosis tissue when objectively tested in pathology laboratories after hormonal therapy.  Further, hormonal therapy cannot eliminate scars or fibrosis caused by endo and this fibrosis by itself can be a cause for pain.
  6. While unproven, under some circumstances it may be prudent to use less toxic hormonal therapy options to potentially reduce the risk of endo recurrence after surgery.   

Surgical Treatment 

When symptoms, history, physical exam, scans  and laboratory evidence all point to endometriosis as a strong possibility to be the root cause of pain, and/or infertility, minimally invasive surgery should be considered to find out for sure.  If endo is diagnosed, then medical hormonal therapy may make sense as part of a highly individualized treatment plan under the guidance of an endo specialist. 

The caveat to considering surgery is that there are, of course, potential risks and complications even though it is minimally invasive.  These risks can be minimized in the hands of an expert surgeon, but they should be considered in a risk-benefit discussion.  

More importantly, assuming you have identified an expert endo excision surgeon, surgery is the cornerstone to current effective treatment.  While incompletely proven, for many reasons, it appears that excision of endo lesions rather than burning away (fulguration) is a better and safer approach.  To discover more about surgical considerations, consider the following articles. 

Read More: Breaking the Cycle: Understanding Endometrioma Recurrence After Surgery

Integrative Holistic View of Endometriosis

Since the cause of endo is incompletely understood, but highly multifactorial, and because the reason endo is present in any given individual may vary, either surgery or hormonal therapy or both may fail.  Failure is relative. In other words, failure may be defined as no immediate pain improvement, persistent subfertility, or it may mean recurrence years later.  These are very different scenarios, requiring different approaches.  Also, it’s important to consider whether or not associated conditions have been addressed, such as SIBO or other microbiome irregularities, other inflammatory immune-modulated disease and so on.  Finally, pelvic floor physical therapy is not just a symptom band-aid but a critical co-treatment for pelvic floor function before and after surgery. These topics are all beyond the scope of this article but you can discover more by reading the following articles. 

Read More: Pelvic Floor Physical Therapy: What you Need to Know 

If expert excision surgery and supportive hormonal therapy, when used, fails to alleviate pain then supportive pain management can still improve quality of life.  This can be mainstream pain and anti-inflammatory medications, nerve block injections, electrical stimulation modalities and/or more holistic approaches including acupuncture, acupressure, mind-body biofeedback approaches such as HeartMath, herbals, aromatherapy and more.  

Read More: Integrative Therapies for Endometriosis

Kicking it up a notch, here is something you do not see covered much other than in a very superficial manner.  It is not rocket science, but is not simplistic at the potential treatment level either.  However, it is something you can implement in a proactive way at any point in your journey.  Specifically this is the impact of nutrition and lifestyle choices, as well as well-selected and targeted supplements, but drilled down a lot further than simply eating right, exercising and de-stressing.

Upcoming bio-molecular therapies will target specific biological pathways that we are now beginning to better understand.  Many pathways are already identified, many not.  The problem is that there are no mainstream medical therapies yet which can target these pathways safely and effectively.  We know from other related genomically modulated inflammatory diseases, like cancer and auto-immune disorders, that these treatments take a while to develop and offer safely.  Meanwhile, many of the genomic, metabolic and epigenetic abnormalities that influence endo are known or at least partly known.  With few exceptions, while it is too early to safely use pharmaceutical agents to modulate these abnormalities, nutrients, specific exercise, toxin avoidance, and even state of mind can affect the same pathways abnormalities without risk.  

Nutrigenomics and Epigenetics  

How do toxins or stress adversely affect your health, while healthy diet and exercise positively influence your health? In large part, relatively new sciences like metabolomics and genomics, and their derivatives, explain this.  You are born with your genes and, so far, you can’t alter that deck of cards.  Some genes may be “bad” and increase your risk of endo, as well as other diseases. However, not everyone with some bad genes develops disease.  The most famous examples are identical twins who inherited the exact same genetics yet might look a little different (e.g eye or hair color) and often get different diseases.  Why? 

Anything and everything you eat, drink, get exposed to via skin or breathing, or even think about or emote, can affect your genes through epigenetics.  This means these substances and neurochemicals, good or bad, can turn genes on and off.  Of course it is infinitely more complex than that and multiple genes affect one process in many cases. However, you can actively modulate your inflammatory and oxidative state.  Do we know what veggie or what thought or what toxin turns what specific gene on or off?  No.  But we do know how these gene controlled pathways synergize and work together to create health or facilitate disease.    

Conclusion

Surgery is a cornerstone to definitive diagnosis of endo and serves as very important part of treatment.  The path to success is a correct diagnosis, attention to detail and a highly individualized treatment plan.  This can only be carried out in consultation with endometriosis specialists in medical and surgical management.  

Unfortunately, it is not easy to find someone or a team that can fit your needs but it is a crucial step forward to seek out the best you can.  The more complex your situation (e.g. possible advanced disease or repeat surgery) the more you need an excision surgeon with master surgeon skills.  Ideally you want a specialist who is not only a surgeon but also capable of guiding you through any additional treatment options you may need, mainstream and holistic.  While a master excision surgeon and integrative endo specialist is hard to come by, many have a team that can fulfill your needs.

References:

Endometriosis: Etiology, pathobiology, and therapeutic prospects

Brassica Bioactives Could Ameliorate the Chronic Inflammatory Condition of Endometriosis

Diet and risk of  endometriosis in a population-based case–control study

Emerging Drug Targets for  Endometriosis

The effect of dietary interventions on pain and quality of life in women diagnosed with  endometriosis: a prospective study with control group

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Do Endometriomas Automatically Make You Stage 4?

Endometriosis, a complex and often painful condition, is characterized by the growth of endometrial-like tissue outside the uterus. This tissue, which differs molecularly and in behavior from the lining of the uterus, can cause severe discomfort and various health complications. One such complication is the formation of endometriomas, sometimes referred to as “chocolate cysts”, which predominantly affect the ovaries. They’re named for their dark, chocolate-like appearance, resulting from the accumulation of old blood within the cyst.

But does the presence of endometriomas automatically classify a patient as having stage 4 (also designated Stage IV) endometriosis? This primer delves into the stages of endometriosis, the nature of endometriomas, and the relationship between the two.

Understanding Endometriosis and Its Stages

Endometriosis is categorized into four stages according to the American Society of Reproductive Medicine (ASRM), with each stage reflecting the location, extent, and superficial vs deep endometriosis implants, presence and severity of adhesions, and the presence and size of ovarian endometriomas.  The current revised ASRM system (rASRM) was adopted in 1996 and remains the most common staging system.  Unfortunately, there is a lot of inter-observer variation, so reproducibility of the score is poor.  It also is limited because it mixes visual staging and actual biopsy proven staging.  So, one surgeon might call it one stage and another surgeon may arrive at a different stage.  In addition, rASRM stages do not correlate well with degree of pain and does not fully consider presence and location of deeply infiltrating endometriosis (DIE).  

For all of the above reasons, other staging systems have been introduced.  The ENZIAN system, which more robustly considers the location and depth of DIE, was intended to supplement the rASRM system but due to numerous misunderstandings it is not widely used.  The endometriosis fertility index (EFI) focused mainly on predicting pregnancy rates. The American Association of Gynecological Laparoscopists (AAGL) proposed a comprehensive system to try to address pain, infertility/subfertility, and surgical excision difficulty. However, it was only recently published in 2021, continues to have limitations of not addressing upper abdominal and extra-abdominal disease, and is not yet widely accepted.

So, we are left with the rASRM system in terms of best communicating surgical outcomes, treatment planning and comparing results.  The Stages are based on a numerical score and are as follows:

Stage I: Minimal Endometriosis

In stage I, there are only a few small clumps of endometriosis tissue, also known as implants. These may be found in the tissue lining the abdomen or pelvis. 

Stage II: Mild Endometriosis

In stage II, there are more implants than in stage I, which may be either superficial or deep, with mild adhesions. Stage II is typically characterized by more extensive endometriosis with deep implants present.

Stage III: Moderate Endometriosis

In stage III, deep implants of endometriosis tissue are present. Adhesions may be dense rather than filmy and thin. As a result, endometriosis at this stage is more widespread than in stage II.

Stage IV: Severe Endometriosis

Stage IV, or severe endometriosis, is typically associated with numerous deep endometriosis plaques, large endometriotic cysts on one or both ovaries and many dense adhesions. There is usually also extensive scar tissue in the abdomen and signs of intense inflammation and scarring or fibrosis.

Read More: Can Endometriosis Cause Bowel Issues?

The Nature of Endometriomas

Endometriomas are endometriosis cysts that primarily affect the ovaries. Endometriomas can occur on one ovary or both and affect between 20-40% of patients with endometriosis, many of whom also have stage III-IV disease. The origin of endometriomas is incompletely known, just like endometriosis in general, but likely multifactorial in principle. 

Endometriomas and Stage 4 Endometriosis: The Connection

The question is, “Do endometriomas automatically make you stage 4?” The answer is not straightforward. The presence of ovarian endometriosis or an endometrioma of course contributes to the staging of endometriosis. Each ovary can contribute between 1 and 20 points, varying based on tiny implants to endometriomas greater than three centimeters in size.   However, the presence of endometriomas alone does not automatically classify a patient as having stage 4 endometriosis, which requires 40 or more points.  In addition to ovarian endometrioma,  presence or absence of surrounding adhesions also contributes to the point total. Also, larger endometriomas are often associated with extensive deep pelvic disease.  So, in general, small endometriomas may not mean Stage 4.  But larger ones are quite likely to mean Stage 4 disease is present.  

Read More: What Does Bowel Endometriosis Feel Like? Understanding the Pain and Symptoms

Treatment Options for Stage 4 Endometriosis and Endometriomas

The treatment of stage 4 endometriosis and endometriomas is complex and highly individualized. It depends on various factors, including the patient’s symptoms, age, desire for pregnancy, and overall health.

Treatment options for stage 4 endometriosis can include a combination of hormonal therapy, pain management, and surgery. While hormonal therapy may help control pain it is highly unlikely to shrink endometriomas, let alone resolve them, or effectively treat endometriosis.  This is due to the relative resistance of endometriosis to progesterone and progestins and incomplete dependence on estrogen.  There are major potential health risks and this should be part of the discussion with your chosen endometriosis specialist.  Pain management strategies include over-the-counter and prescription medications, as well as physical modalities like pelvic floor therapy and transcutaneous electrical nerve stimulation (TENS) units.  While this can help manage chronic pain associated with the condition this does not treat the root cause, which is endometriosis and resulting fibrosis.

Minimally invasive surgery under the care of an extremely well trained surgeon is the cornerstone of advanced endometriosis treatment.   This is not surgery that should be undertaken by novices or most general gynecologists.  The reason is mainly due to the fact that anatomy can be severely distorted, making surgery very challenging in terms of achieving excision while limiting complications which can be life threatening or at least very morbid. 

Specifically regarding endometriomas, endometriomas require excision, not drainage.  Draining is very ineffective and the endometrioma can soon recur.  Ideally, any surgical spillage should be minimized because it is not just old blood but also potentially endo-related stromal stem cells, which can implant and grow elsewhere.  Overall, the planning and timing of surgery varies significantly.  Often decisions have to be made based on whether or not fertility is the main concern or pain, or both in equal degrees.  Surgical planning is complex and requires a master surgeon for optimal outcomes.  Especially for the management of Stage 4 endometriosis and endometriomas a highly trained and skilled endometriosis specialist and surgeon is mandatory for your success. 

Read More: Life After Endometriosis Surgery: A Comprehensive Guide

References:

Risk factors for coexisting deep endometriosis for patients with recurrent ovarian endometrioma

Diagnosis and management of endometriosis

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Can Endometriosis Spread to Your Diaphragm: An In-Depth Analysis

Endometriosis is a chronic health condition that manifests when tissues akin to the endometrial lining start to grow outside the uterus. This exogenous growth of endometrial-like tissue can be found in various areas such as the ovaries, fallopian tubes, and bladder. However, endometriosis can also occur in less common areas like the diaphragm, organs in the upper abdomen, like the stomach, in the retroperitoneum like the lymph nodes and kidneys, and so on.  Of these uncommon findings, finding some amount of endo on the diaphragm is perhaps most common. 

Understanding the Diaphragm

The diaphragm is a large, dome-shaped muscle located beneath the lungs, responsible for the crucial function of respiration. Acting as a separation between the abdominal and thoracic (chest) cavities, its involuntary contraction and relaxation facilitate the breathing process. The diaphragm also has openings that allow important structures such as the esophagus and major blood vessels to pass through.

Endometriosis in the Diaphragm

In most cases, diaphragmatic endometriosis affects the right side of the diaphragm. The endometrium-like tissue that builds up on the peritoneal surface of the diaphragm reacts to the menstrual cycle’s hormones in the same way it does in the uterus, which can cause a range of symptoms in the affected individuals.

Read More: Understanding How Endometriosis Can Cause

Symptoms of Diaphragmatic Endometriosis

The most common symptoms of diaphragmatic endometriosis include pain in the chest, upper abdomen, right shoulder, and arm. This pain typically occurs around the time of your period and may get worse when you take deep breaths or cough. In rare cases, if it grows through the diaphragm and involves the lungs, it can lead to a collapsed lung.  This is known as catamenial pneumothorax. However, diaphragmatic endometriosis can often be asymptomatic while only small superficial implants are present.  Hence, surgery usually involves at least looking at the diaphragms to document if there are any endo implants even if there are no symptoms in that area. 

Causes of Diaphragmatic Endometriosis

The exact causes of diaphragmatic or other types of endometriosis remain unknown.  However, it is plausible that endo cells from the pelvis can travel throughout the abdomen and up into the diaphragm. What makes them implant and grow there is unknown.  Alternatively, there are other possible etiologies, such as lymphatic or blood stream spread to this area or direct transformation of stem cells or growth of embryologic remnants into endometriosis implants.  This is all likely facilitated or repressed by genetic and genomic molecular signalling that is only now coming to be appreciated and unraveled.  

Read More: What Does Bowel Endometriosis Feel Like? Understanding the Pain and Symptoms

Diagnosis of Diaphragmatic Endometriosis

Diagnosing diaphragmatic endometriosis can be challenging. Diagnosis often involves a combination of medical history, physical examination, and imaging tests such as a CT (computed tomography) scan or MRI (magnetic resonance imaging).

The most reliable way to diagnose diaphragmatic endometriosis is via minimally invasive laparoscopic or robotic surgery. Ideally, the surgeon who is excising endo in the pelvis can also remove diaphragmatic implants or have a surgeon available as part of the team, who can do so. In the much rarer event that endo is suspected to be inside the chest and/or growing on or in the lungs, a thoracic surgeon should be consulted.

Treatment of Diaphragmatic Endometriosis

Surgery is the main treatment for diaphragmatic endometriosis and this can usually be accomplished using minimally invasive laparoscopic or robotic surgery.  Again, the excision surgeon or surgical team should be capable of removing endo from the diaphragms.  

In some cases, endo is not suspected to be growing on the diaphragm.  In that case, if the surgery cannot be safely accomplished by the surgeon or surgeons on the team, it is best to back out and not cause more harm than good.  The diaphragm is very thin and it is rather easy to enter the chest as part of the excision.  In expert hands, that is not a problem. However, going one step beyond diaphragmatic endo, if it is unclear whether or not the endo may be crossing into the chest cavity it is best to back out, re-evaluate with proper imaging and consultation and perform the surgery with a thoracic surgeon at a later date.  

Complications of Diaphragmatic Endometriosis

In relatively rare cases, endometriosis of the diaphragm can lead to defects or holes forming in the diaphragm. Endo can then grow into the chest cavity and possibly involve the lungs. This can lead to life-threatening complications such as a collapsed lung during your period (catamenial pneumothorax) or significant bleeding into the chest, also compressing the lung.  

Read More: Can Endometriosis on Ureter Cause Kidney Shooting Back Pain?

Conclusion

In conclusion, while it is relatively uncommon, endometriosis can indeed spread to your diaphragm. Under more rare circumstances it can even grow into the chest and lungs.  Expert endometriosis consultation and care is always prudent.  But if you are experiencing upper abdominal or chest symptoms as discussed this this article, it become crucial.  

References

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6018178/

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Can Endometriosis on Ureter Cause Kidney Shooting Back Pain?

Endometriosis is a common gynecological condition that affects many women during their reproductive years. While it typically manifests in the pelvic region, in some instances, it may invade other organs, including the urinary system. This article explores the question: Can endometriosis on the ureter cause kidney shooting back pain?

About Endometriosis

Endometriosis is a chronic disease characterized by the presence of endometrial-like tissue outside the womb. This could include the ovaries, fallopian tubes, and the lining of the pelvic cavity. In some extreme cases, endometrial tissue may also affect organs outside the pelvic cavity, such as the bladder, bowel, or kidneys.

Read More: Understanding Endometriosis: Unveiling the Common Symptoms and Their Impact

Understanding Ureteral Endometriosis

Ureteral endometriosis is an uncommon manifestation of the disease, accounting for about 1% of all endometriosis cases. It involves the ureters, the tubes that transport urine from the kidneys to the bladder. This condition can lead to urinary tract obstruction, resulting in hydronephrosis, which is the swelling of a kidney due to a build-up of urine.

The Kidney-Endometriosis Connection

The kidneys can be impacted when one or both of the ureters become affected by endometriosis. The section of the ureter that is usually affected sits below the pelvic area.

Symptoms of Kidney Endometriosis

Kidney endometriosis can be asymptomatic for several years. If a person who has undergone surgery to treat endometriosis has ongoing urinary problems such as pain and infections, it may suggest the presence of urinary tract or kidney endometriosis. Symptoms may include:

  • Pain in the lower back that gets worse with a monthly menstrual cycle. That pain can also extend down through the legs.
  • Blood in the urine that can co-occur with the menstrual cycle
  • Difficulty urinating
  • Recurrent urinary tract infections

Read More: Understanding How Endometriosis Can Cause

Diagnosis of Kidney Endometriosis

The diagnosis of ureteral endometriosis relies heavily on clinical suspicion. As a result, they often misdiagnose patients with kidney cancer. This can lead to patients not receiving treatment on time, or receiving the wrong kind of treatment.

Read More: Life After Endometriosis Surgery: A Comprehensive Guide

Treatment Options

Kidney endometriosis can lead to kidney damage and even kidney failure if left untreated. However, the best approach is to treat the condition by removing endometriosis lesions with minimally invasive laparoscopic surgery.

The Silent Threat of Kidney Failure

One of the most concerning aspects of ureteral endometriosis is the silent threat of kidney failure. It is estimated that as many as 25% to 50% of nephrons are lost when there is evidence of ureteral endometriosis, and 30% of patients will have reduced kidney function at the time of diagnosis.

Impact on Kidney Health

The good news is that if one kidney isn’t functioning due to endometriosis, you can survive on the other kidney. So, if you find out you only have one fully-functioning kidney, it’s essential to take care of it.

Conclusion

In conclusion, while endometriosis is typically a pelvic condition, it can venture beyond and affect the urinary system, including the kidneys. This can lead to severe complications, including kidney failure. Therefore, it’s crucial for women with endometriosis to be aware of the potential symptoms and seek medical advice if they experience any signs of kidney problems. The early detection and treatment of ureteral endometriosis are crucial to preserving kidney function and overall health.

References:

https://drseckin.com/kidney-endometriosis/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3535807/

Endometriosis: Perilous impact on kidneys

https://endometriosis.net/clinical/silent-kidney-failure

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Understanding How Endometriosis Can Cause

Bowel Problems

Endometriosis, a common health concern among women, can manifest itself in various ways, one of them being bowel problems. But how exactly can endometriosis cause bowel problems? This article will take you through the intricate connection between endometriosis and bowel problems, the symptoms to look out for, diagnostic procedures, and potential treatments.

What is Endometriosis?

Endometriosis is a health condition where the tissue similar to the type that lines the uterus, known as the endometrium, grows outside the uterus. This condition predominantly affects the reproductive organs such as the ovaries, fallopian tubes, and the external part of the uterus. However, it can also extend to other parts of the body including the bowels, rectum, and other pelvic organs.

Understanding Bowel Endometriosis

Bowel endometriosis is a form of endometriosis that affects the gastrointestinal tract, specifically the bowels. It can appear in two forms: superficial (on the surface of the bowel) and deep (penetrating the bowel wall).

Read More: Understanding Bowel Endometriosis

Symptoms of Bowel Endometriosis

The symptoms of bowel endometriosis can vary widely depending on the location of the lesion, its size, and how deep it is in the bowel wall. Some women may experience no symptoms. However, common symptoms include:

  • Difficulty in passing stool or loose, watery stools (constipation or diarrhea)
  • Pain during bowel movements
  • Menstrual discomfort
  • Painful sexual intercourse
  • Difficulty in conceiving (infertility)
  • Blocked bowel (a rare symptom)

It is noteworthy that these symptoms can often mimic other conditions like irritable bowel syndrome (IBS), but the two conditions are distinct. One distinguishing factor is that with bowel endometriosis, symptoms often worsen before and during the menstrual period.

Read More: Endometriosis and Painful Intercourse: Is it Really Just Endometriosis?

Causes of Bowel Endometriosis

The exact cause of bowel endometriosis is still under study. However, several factors have been linked to its occurrence. These include genetic predisposition, inflammation, and levels of estrogen, a female sex hormone.

The Prevalence of Endometriosis

Endometriosis affects approximately 10%-12% of women of childbearing age. The condition is often diagnosed in women who are in their 30s, although it can occur at any age.

Diagnosing Bowel Endometriosis

The diagnosis of bowel endometriosis starts with the doctor asking about your symptoms and medical history, followed by a physical examination of your pelvic area. The doctor may also recommend imaging tests to get more information on the location and size of any cysts or tissue damage related to endometriosis. These tests include:

  • Transvaginal or transrectal ultrasound: This procedure involves the insertion of a wand-like device into your vagina or rectum. This device releases sound waves that create images of your organs.
  • Magnetic resonance imaging (MRI): An MRI test provides detailed images of your organs and tissues using a magnetic field and radio waves.
  • Laparoscopy: This surgical procedure involves making a small incision near your belly button and inserting a thin viewing tool called a laparoscope.
  • Barium enema: This type of X-ray is used to see changes or defects in your large intestine (colon).
  • Colonoscopy: They pass a tube with a camera on its tip through the anus into the colon to directly visualize the wall and take samples from inside the colon.

Read More: Colon Chronicles: Delving into Bowel Endometriosis

Treating Bowel Endometriosis

The treatment plan for bowel endometriosis will be personalized, taking into account your symptoms, medical history, age, and reproductive plans. Treatments can include:

  • Surgery: The aim of surgery is to remove as many lesions as possible while preserving your organs and overall health.
  • Hormone treatments: These medications control estrogen levels which can worsen the symptoms of bowel endometriosis.
  • Counseling: Given the ongoing nature of bowel endometriosis and its impact on both physical and mental health, counseling may be recommended to provide emotional support.

The Prognosis for Bowel Endometriosis

There is currently no cure for endometriosis. However, treatments like surgery and hormone therapy can help manage the symptoms. It is also important to note that symptoms could return if treatment is halted, or they could recur on their own, especially in cases with deep lesions.

Endometriosis is a complex condition that can cause bowel problems and other health issues. If you suspect you have endometriosis and are experiencing bowel problems, it’s important to consult with a healthcare provider. Early diagnosis and treatment can help manage symptoms and improve your quality of life.

References:

https://www.webmd.com/women/endometriosis/bowel-endometriosis

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

https://www.endofound.org/gastrointestinal-distress

Bowel Disease

ENDOMETRIOSIS AND CONSTIPATION

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Anti-Mullerian Hormone & Endometriosis – What’s The Connection?

Endometriosis has been associated with a marker called Antimullerian hormone (AMH), which is a pivotal marker of ovarian reserve, and is commonly measured in women with endometriosis specifically in relation to fertility. There is debate among the community that your AMH level is what it is and it cannot change. I would challenge this notion though as I have seen people with endometriosis have significant increases after proper excision surgery, which is a point of debate. Recently, I had another patient send me lab work that demonstrated what some may call a low AMH, has confirmed endometriosis, but likely a surgery that was incomplete and is continuing to suffer ongoing symptoms. Though I have seen this change in my patients, I recognize this is only a small fraction of the people suffering, so it was time to review what the research says. This article aims to provide a review of the various studies conducted on this critical subject, exploring how endometriosis and AMH interact, the effect of surgical intervention on AMH levels, and the subsequent impact on fertility.

The Antimullerian Hormone (AMH): A Brief Overview

AMH, a hormone playing diverse roles during embryonic development and puberty, is produced by ovarian follicles smaller than 8 mm, hence linking ovarian reserve to AMH levels in the blood. The normal range for AMH hovers between 1 and 4 ng/mL. However, women’s AMH levels greatly vary based on factors like age, ethnic background, lifestyle, and genetics. Additionally, someone at the low end of range may still suffer problems despite them being “in range.” 

AMH Testing in Reproductive Health

AMH testing is a crucial tool for evaluating female fertility. It can assist in:

  1. Assisting with understanding the prognosis of a woman’s response to assisted reproduction techniques (ART) such as in vitro fertilization (IVF)
  2. Confirming other markers of menopause
  3. Providing a more comprehensive evaluation when certain conditions are confirmed or suspected such as polycystic ovarian syndrome (PCOS), premature ovarian failure, and endometriosis

Endometriosis and AMH Levels

Endometriosis is a common culprit behind infertility, affecting nearly half of the women suffering from this ailment. This infertility arises from various factors, including inflammation in the reproductive tract, scar tissue-induced decreased blood supply to the ovaries, and pelvic anatomical distortions. Research reveals a significant correlation between endometriosis and lower than average AMH levels.

Some argue that surgical intervention of endometriosis often leads to a reduction in AMH levels, though many of us in the community may argue that this is a more nuanced topic and this highly depends on the skill of the surgeon, something that is often overlooked in endometriosis research.  Various studies have attempted to decipher the impact of endometriosis surgery on AMH levels and fertility outcomes. A retrospective study conducted in 2016 found that preoperative AMH levels did not influence pregnancy rates after surgery. This is consistent with the literature we have on surgical impact, and thus the need for better research in the future. In my experience, this is the opposite of what I have seen, as many of us have seen when people get to the right surgeon. 

Laparoscopic Cystectomy on AMH Levels

Laparoscopic ovarian cystectomy, a common surgical procedure to treat endometriomas, has been associated with decreased ovarian reserve. A study in 2019 demonstrated significantly lower AMH levels in women who underwent laparoscopic endometrioma cystectomy, especially in cases with bilateral cysts larger than 7 cm and stage 4 endometriosis. 

Considerations: I want to highlight that we do not know the skill of the surgeon, but we do know that the skill of the surgeon matters. That being said, large endometriomas can often overtake ovarian tissue which is what happened to Christina. Hear her story here. This is why it is extremely important to find a knowledgeable surgeon that you feel comfortable with. If you need help finding a surgeon, you can start here. 

Laparoscopic Endometriosis Surgery on AMH Levels

A literature review and meta-analysis of 19 studies conducted between 2010 and 2019 on the impact of laparoscopic endometriosis surgery on AMH levels post-surgery revealed a decline in AMH levels, extending beyond six months post-surgery. This decline was more pronounced in cases where surgery was performed on both sides of the body, compared to a single side.

Again, I would argue that we consider the quality of the research and the skill of the surgeon. Remember, ablation is different from excision and this may be another factor that is skewing results. I repeat this because, like many of us in the community, this is not our experience, thus I often read research with these things in mind. If many others in the community are also seeing this, there must be more to consider than what is presented. The bottom line is that we need better research. 

AMH Levels Post-Surgery for Endometrioma

Several studies have observed that laparoscopic ovarian cystectomy results in a significant and progressive decrease in AMH levels post-surgery. However, other studies have noted that this decrease may only be temporary, with levels potentially returning to normal within a year. Another factor to consider is when the AMH was measured post-surgery and what other factors may have impacted the levels! 

Certain studies have observed a temporary decrease in AMH levels following endometrioma ablation. However, this decrease did not persist beyond six months in most cases, suggesting a potential recovery of ovarian reserves. 

Several studies have compared the decrease in AMH levels following ovarian cystectomy and endometrioma vaporization. The general consensus suggests a higher postoperative decline in AMH levels following cystectomy compared to vaporization, particularly in bilateral endometrioma cases.

This caught my attention and highlights my thoughts on how the surgery (excision) is being performed as to not compromise ovarian tissue. Using ablation, which is what the CO2 laser is referring to, may not compromise the ovarian tissue, but it also may not treat the disease. Paul Tyan, MD discusses this complex topic in our interview which you can find here. 

The combined technique, involving partial cystectomy and ablation, has been shown to have less detrimental effects on the ovary, resulting in a lesser decline in AMH levels post-surgery.

The role of endometriosis surgery in improving pregnancy rates remains a topic of debate. Some studies suggest that surgery might improve the success rates of fertility treatment, while others highlight the risk of ovarian damage due to surgical intervention.

In conclusion, the Antimullerian hormone is a vital marker for assessing the impact of endometriosis and its surgical intervention on ovarian reserve and fertility. Understanding the complex relationship between AMH levels, endometriosis, and surgical intervention along with identifying gaps in the research can help medical professionals devise more effective treatment strategies, improve the quality of research studies which ultimately improves patient outcomes.

IRelated Reading:

  1. Does Endometriosis Cause Infertility? Covering the Basics
  2. Endometriosis and Pregnancy: Natural, Medical, & Surgical Options

References:

  1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6603105/
  2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7865255/
  3. https://drseckin.com/endometriosis-surgery-and-amh-levels/

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Life After Endometriosis Surgery: A Comprehensive Guide

Endometriosis, a chronic and often debilitating condition, affects numerous women worldwide. Surgery, specifically laparoscopic excision, is considered the gold standard for treatment. However, what is life like after endometriosis surgery? This comprehensive guide explores various aspects of life after endometriosis surgery, including recovery, physical and mental health, fertility, and the overall quality of life.

Understanding Endometriosis and Its Surgical Treatment

Endometriosis is a condition where tissue similar to the lining of the uterus grows outside the uterus, causing adhesions, fibrosis, and lesions in organs such as the intestines or bladder. The symptoms can be severe, including pelvic pain, dysmenorrhea, and even infertility.

Laparoscopic excision surgery is currently deemed the most effective method for diagnosing and treating endometriosis. In this procedure, endometriosis lesions and their surrounding tissue are cut out and removed. Despite its efficacy, access to endometriosis excision specialists can be limited, expensive, and frequently not covered by insurance.

Read More: Endometriosis Surgery Costs: Everything You Need to Know

The Post-Surgery Recovery Period

Recovery from endometriosis surgery largely depends on the extent of the disease and the individual’s overall health. Most surgeries are minimally invasive, involving only a few small incisions and a laparoscope to guide the surgeon’s tools. Recovery might take several weeks to months, with patients often feeling more tired in the first week after surgery.

Patients are typically advised to consume soft, easily digestible foods, drink adequate fluids, and take fiber supplements and laxatives to prevent constipation, especially if they are on narcotic pain medication. Strenuous activities should be avoided, although short walks are encouraged.

How long should you take off work after endometriosis excision surgery?

How long you take off work after endometriosis excision surgery depends on your case and factors such as how much endometriosis is removed, how physical your job is, your pain levels and symptoms after surgery, and any complications. The recommended time could vary from one week to over one month. This is something you should discuss with your surgeon before excision surgery.

Read More: Physical therapy before excision surgery for endometriosis

Physical Health After Surgery

According to a study, the physical health component of quality of life (QoL) in women with endometriosis can be positively correlated with age. However, in a study, women with deep endometriosis haa worse physical and social functions compared to the norm in Spanish women.

The physical health component of QoL includes physical function, physical role, body pain, and general health. Bodily pain, especially, can significantly improve after surgery.

Read More: Endometriosis what to do after diagnosis

Mental Health After Surgery

Mental health is another crucial aspect to consider in life after endometriosis surgery. Emotional role, mental health, and vitality are areas that could improve significantly after surgery.

However, it is essential to note that the emotional strain of enduring a chronic disease like endometriosis can lead to mental health disorders like anxiety or depression in 60% of patients. Therefore, mental health support should be incorporated into post-surgery care.

Fertility and Family Planning After Surgery

Fertility and family planning are significant concerns for many women with endometriosis. Studies show that surgery could double the spontaneous pregnancy rate in people with mild endometriosis. Those with moderate to severe endometriosis also have improved spontaneous birth rates after the laparoscopic removal of endometrial-like lesions.

However, even after successful surgery, some women may struggle with fertility issues. It is essential to have a candid discussion about fertility and family planning with your healthcare provider before surgery.

Financial Implications of Endometriosis Surgery

Endometriosis surgery can be costly, and financial wellness can significantly impact the individual’s mental and physical wellness and quality of life. Many excision surgeons in the United States are not in-network with insurance, which may result in higher out-of-pocket rates.

Patients should discuss expected costs with their insurance company and surgeon’s office before surgery and develop a savings plan for future surgery if needed. For people who are uninsured or underinsured, some excision specialists may offer payment plans or connect patients with grants or donated surgeries.

Coping with the Potential Return of Endometriosis After Surgery

Despite the effectiveness of surgery in improving symptoms, endometriosis can reoccur. Studies have shown that over ten years, 51% of women needed another surgical intervention to treat a recurrence of endometriosis.

Risk factors for a follow-up procedure include being under age 30 at the time of the original surgery, endometriosis in the ovaries, endometriosis patches that were not entirely removed, certain subtypes of endometriosis, and the skill of the original surgeon in removing most endometriosis tissues.

Embracing a Healthy Lifestyle After Surgery

Well-being after endometriosis surgery is essential for physical and mental health. Patients are encouraged to lead a healthy lifestyle, which includes drinking plenty of fluids, exercising regularly, maintaining a healthy weight, and eating a diet rich in omega 3, vitamin E, vitamin C, and citrus. Smoking and excessive alcohol intake should be avoided.

In addition, patients should be watchful for signs of infection such as fever, shaking chills, and redness or oozing of the incision sites, and report these to their healthcare provider immediately.

A Final Note

Life after endometriosis surgery can be a journey of healing and rediscovery. While the journey may be challenging, it is essential to remember that you are not alone. Reach out to your healthcare provider, join support groups, and lean on your loved ones. Remember, every step you take towards recovery is a step towards a healthier, happier you.

References:

https://my.clevelandclinic.org/health/treatments/4620-endometriosis-surgery

https://www.verywellhealth.com/endometriosis-surgery-7377270

https://pacificendometriosis.com/postop-care-the-next-6-12-weeks/

https://www.verywellhealth.com/endometriosis-excision-surgery-6385621

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9605478/

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Colon Chronicles: Delving into Bowel Endometriosis

In our recent blog, we highlighted the significance of addressing bowel endometriosis, a condition prone to misdiagnosis. Whether individuals have struggled with lifelong bowel issues or are suddenly facing disruptions, determining what’s considered normal can be perplexing. The “normal” range spans anywhere from three times a day to as infrequent as three times per week. In many sources, the focus is typically limited to frequency and to some degree consistency; however, there’s an overall scarcity of information on what defines normalcy. 

ICYMI: Understanding Bowel Endometriosis

This ambiguity is particularly challenging for those with endometriosis, where gastrointestinal symptoms vary widely, making it tough to discern what’s amiss. About 90% of endometriosis cases involve some form of gastrointestinal symptoms, often leading to an IBS (irritable bowel syndrome) diagnosis, which essentially offers a label for persistent symptoms without an identifiable cause. The usual next step in diagnostics is often a colonoscopy, a key tool for identifying or ruling out certain diseases. This article explores the nuances of bowel endometriosis, with a primary focus on the role and precision of colonoscopy in diagnosing this condition.

Bowel endometriosis is considered to be deep infiltrating endometriosis and can lead to a variety of symptoms which we discussed in the previous blog, but is often concerning if not diagnosed timely and may risk more complex surgeries including resection if the disease is not properly addressed. 

Related Reading: How to Get an Endometriosis Diagnosis

The Role of Colonoscopy – Is it helpful?

A colonoscopy is a diagnostic procedure commonly used to examine the inner lining of the large intestine (colon and rectum). It involves the use of a long, flexible tube called a colonoscope, which has a small camera attached to its end. This tool allows physicians to visualize the interior of the colon to identify any abnormal conditions or changes.

In the context of bowel endometriosis, a colonoscopy can potentially detect signs of endometrial tissue growth within the bowel. However, its effectiveness and accuracy in diagnosing this condition have been subjects of ongoing research and debate. Aside from its ability to detect endometriosis, there is also consideration of the provider performing the procedure and their level of knowledge of endometriosis. 

The use of colonoscopy in diagnosing bowel endometriosis has been a topic of considerable discussion among medical professionals. Given the invasive nature of the procedure and the often non-specific symptoms of bowel endometriosis, the role and necessity of colonoscopy in its diagnostic process have been questioned.

However, several case studies and research findings suggest that colonoscopy can indeed play a crucial role in identifying bowel endometriosis. In particular, it has been found to be effective in detecting endometriosis growth in the bowel, with certain colonoscopic findings such as eccentric wall thickening, polypoid lesions, and surface nodularities often being associated with endometriosis.

Evaluating the Accuracy of Colonoscopy for Diagnosing Bowel Endometriosis

While the potential of colonoscopy in detecting bowel endometriosis has been recognized, its accuracy in doing so has been the subject of extensive research. A number of studies have sought to evaluate the sensitivity, specificity, and predictive values of colonoscopy in diagnosing this condition.

One such study was conducted by Milone M et al., who performed a prospective observational study that included women diagnosed with deep pelvic endometriosis. The study aimed to evaluate the accuracy of colonoscopy in predicting intestinal involvement in deep pelvic endometriosis.

The results of the study suggested that colonoscopy did have the potential to detect bowel endometriosis, with a number of cases accurately diagnosed through the procedure. However, the overall sensitivity, specificity, and predictive values of colonoscopy were found to be variable, indicating room for improvement in its diagnostic accuracy.

In another study conducted by Marco Milone and his team, the researchers also found that while colonoscopy could indeed identify bowel endometriosis, its accuracy was not optimal. The study elucidated that the presence of colonoscopic findings of intestinal endometriosis in deep pelvic endometriosis was quite low, indicating that routine colonoscopy may not be justified for all women with deep pelvic endometriosis.

A Case Study: Bowel Endometriosis and Colonoscopy

To illustrate the potential role of colonoscopy in diagnosing bowel endometriosis, let’s consider a case study involving a 45-year-old woman who presented with abdominal pain in her left lower quadrant. This woman underwent a colonoscopy, which revealed a submucosal tumor-like lesion in her sigmoid colon.

Upon further examination using magnifying endoscopy, the lesion was found to contain sparsely distributed round pits – a finding that was suggestive of endometrial glands and stroma (the histological definition of endometriosis). This discovery led to a biopsy of the lesion, the results of which confirmed the presence of intestinal endometriosis.

This case study serves to highlight how colonoscopy, when combined with other diagnostic methods like magnifying endoscopy and biopsy, can aid in the detection and diagnosis of bowel endometriosis.

The Future of Bowel Endometriosis Diagnosis

While the role and accuracy of colonoscopy in diagnosing bowel endometriosis have been explored, research in this area is ongoing. The development and refinement of diagnostic methods are crucial for improving the detection and treatment of bowel endometriosis.

In parallel with the innovations in medical technology, new diagnostic methods such as magnifying chromoendoscopy, target biopsy, and virtual colonoscopy are being explored and studied for their potential to improve the accuracy of bowel endometriosis diagnosis. These advancements, coupled with a deeper understanding of the condition, may pave the way for more accurate and less invasive diagnostic options in the future.

Bowel endometriosis is a complex condition that can significantly impact the quality of life of those affected. While colonoscopy can play a role in its diagnosis, its effectiveness and accuracy are subject to continuous research and improvement. Exploring new diagnostic methods and refining existing ones are crucial steps toward enhancing the detection and treatment of this condition. As we continue to learn more about bowel endometriosis and its nuances, we can hope for more efficient and accurate diagnostic tools in the future.

Related Reading:

  1. Endo-Fighting Microbiome Optimization: Research-based Tips
  2. Endometriosis and the Microbiome: Insights and Emerging Research

References:

  1. Walter SA, Kjellström L, Nyhlin H, Talley NJ, Agréus L. Assessment of normal bowel habits in the general adult population: the Popcol study. Scand J Gastroenterol. 2010;45(5):556-566. doi:10.3109/00365520903551332
  2. Habib, N., Centini, G., Lazzeri, L., Amoruso, N., El Khoury, L., Zupi, E., & Afors, K. (2020). Bowel Endometriosis: Current Perspectives on Diagnosis and Treatment. Int J Womens Health, 12, 35-47. https://doi.org/10.2147/IJWH.S190326 
  3. Milone, M., Mollo, A., Musella, M., Maietta, P., Sosa Fernandez, L. M., Shatalova, O., Conforti, A., Barone, G., De Placido, G., & Milone, F. (2015). Role of colonoscopy in the diagnostic work-up of bowel endometriosis. World J Gastroenterol, 21(16), 4997-5001. https://doi.org/10.3748/wjg.v21.i16.4997 
  4. Tomiguchi, J., Miyamoto, H., Ozono, K., Gushima, R., Shono, T., Naoe, H., Tanaka, M., Baba, H., Katabuchi, H., & Sasaki, Y. (2017). Preoperative Diagnosis of Intestinal Endometriosis by Magnifying Colonoscopy and Target Biopsy. Case Rep Gastroenterol, 11(2), 494-499. https://doi.org/10.1159/000475751 

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Through the Looking Glass: Reflecting on 2023

Embarking on the journey of self-reflection is not just a personal endeavor; for us at iCareBetter, it’s a collective celebration of progress, community, and collaboration. As we bid farewell to 2023, a year marked by challenges and triumphs, it’s time to take a look into the past year and reflect on all that has been accomplished. Join us as we navigate through the areas of growth, community involvement, projects, and meaningful collaborations that shaped our year. In this special blog post, we’re excited to share the insights gained from our podcast endeavors and offer a sneak peek into the thrilling developments that await us in 2024. Let’s rewind, recap, and anticipate the exciting narrative that continues to unfold in the ever-evolving story of iCareBetter.

About iCareBetter

iCareBetter is an innovative platform dedicated to helping patients with endometriosis and chronic pelvic pain find compassionate and skilled experts. All experts on iCareBetter have shown knowledge and expertise in the treatment of endometriosis and chronic pelvic pain.

Vision

Our vision is to reduce the symptom-to-effective treatment of endometriosis to less than a year. Studies show that patients with endometriosis spend an average of 7.5 years to have an official diagnosis. Moreover, even after the diagnosis, patients will have to spend several years with multiple failed treatment attempts. After the long delays in diagnosis and treatment, they might be lucky enough to receive effective treatment from an expert.

Mission

Our mission is to improve access to high-quality specialized care for those with endometriosis. iCareBetter wants to combat the issue of patients living in confusion, pain, and isolation. To that end, we hope to connect as many patients to the right experts as early as possible. And we hope that this will ensure timely diagnosis and effective treatment.

To read more about why iCareBetter was built and the inspiration behind it, check out our blog here and listen to episode 1 of the podcast here, where Saeid and Jandra give you a behind the scenes look into what inspired them. 

What happened in 2023?

In 2023, iCareBetter grew in many ways, including new avenues to provide education along with collaboration from the community. Here are some of the highlights!

  • We started a podcast! iCareBetter: Endometriosis Unplugged is hosted by Jandra Mueller, DPT, MS a pelvic floor physical therapist and endometriosis patient. The podcast is available on Spotify, Apple Podcasts, and Youtube.
    • We had 19 weekly episodes in season one
    • Listeners joined from all over the world, reaching 22 countries
  • We brought on a team to help with new content on social media creating a more visually appealing platform, community engagement, and followers.
  • We now have 211 providers on our website available and ready to help those suffering from endometriosis and we are continuing to grow!
  • Our blog content is now consistent with twice weekly posts bringing you updates on all things endometriosis. 

What To Expect in 2024 

While 2023 was a big year for iCareBetter, we hope to continue the growth and expand our providers across the globe. Our hope is to increase our collaboration with medical specialists, researchers, and advocates. There are some exciting things to come in 2024 including a new season of iCareBetter: Endometriosis Unplugged as well as some other projects that will be announced in 2024.   

We hope you have found our resources helpful either for yourself or a loved one, and hope you continue to share the love and spread the word about Endometriosis. All of us here at iCareBetter wish you a safe and happy new year. 

Cheers to 2024!

Do you or a loved one have Endometriosis? Here are some blogs that may help you get started on your journey. 

  1. Endometriosis Signs and Symptoms: Everything You Need to Know
  2. Endometriosis Facts & Myths: Dispelling the Misconceptions

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Women’s Health Research and the White House Initiative

Merry Christmas and Happy Holidays! It’s time for some good news when it comes to researching ‘women’s diseases.’

Women’s health has long been an area that has been overlooked and understudied in medical research. Despite making up more than half of the population, women have historically been underrepresented in clinical trials and medical studies, leading to significant gaps in knowledge and understanding of women’s health issues. However, recent developments, such as the establishment of the White House Initiative on Women’s Health Research, are changing the landscape and paving the way for a new era of research and innovation in women’s health.

The Historical Underrepresentation of Women in Research

For decades, women’s health needs were considered a low priority in the scientific and medical fields. During the 1970s, when the women’s health movement emerged as part of the larger women’s movement, it became apparent that women were significantly underrepresented in medical and scientific research. At that time, there were few women working in medicine and science, and the lack of representation had serious implications for the understanding and treatment of women’s health conditions.

One significant example of the cautious approach towards including women in research was the Food and Drug Administration’s policy in 1977, which recommended excluding women of childbearing potential from early-stage drug trials. This policy was a response to the tragic consequences of the drug thalidomide, which caused severe birth defects in thousands of babies born to women who had taken the drug during pregnancy. While the intention was to protect women from potential harm, it resulted in a lack of data on how drugs specifically affected women.

The Shift Towards Inclusion and Advocacy

As awareness grew about the exclusion of women from research studies, advocacy groups and activists began to protest for change. They argued that individual women should be allowed to make informed decisions about participating in research and that excluding women limited their access to potentially life-saving treatments. The Public Health Service Task Force on Women’s Health Issues, in their 1985 report, called for long-term research on how behavior, biology, and social factors affect women’s health, further highlighting the need for inclusion.

In response to these concerns, the National Institutes of Health (NIH) established a policy in 1986 that encouraged the inclusion of women in studies. This policy, published in the NIH Guide for Grants and Contracts in 1987, urged researchers to include women and minorities in their studies and provided guidelines for doing so. The policy was further reinforced in 1989 when NIH announced that research solicitations should prioritize the inclusion of women and minorities.

The Founding of the White House Initiative on Women’s Health Research

In 1990, the Congressional Caucus for Women’s Issues requested an investigation into NIH’s implementation of guidelines for the inclusion of women in research studies. The subsequent report by the General Accounting Office (now known as the Government Accountability Office) highlighted inconsistencies in applying the inclusion policy and the need for improved communication. As a result, the Office of Research on Women’s Health (ORWH) was established in 1991 to monitor and promote the inclusion of women in research.

Under the leadership of Dr. Bernadine Healy, the first female NIH Director, the Women’s Health Initiative was launched in 1991. This initiative consisted of clinical trials and an observational study involving over 150,000 postmenopausal women. The trials aimed to investigate the effects of hormone therapy but was stopped due to incorrect interpretation of the data resulting in the majority of women stopping their hormone therapy overnight, literally. We are still dealing with the consequences of this today. 

Legislation and Policies to Ensure Inclusion

While the inclusion of women in research was initially an NIH policy, it became federal law in 1993 through the NIH Revitalization Act. This act included provisions requiring the inclusion of women and minorities in clinical research funded by NIH. The law mandated that NIH ensure the inclusion of women and minorities and that trials be designed to analyze whether variables affect women and minorities differently. It also emphasized that cost should not be a reason for exclusion and called for outreach efforts to recruit diverse populations for clinical studies.

Since the establishment of the ORWH, the office has monitored adherence to inclusion policies and guidelines. Researchers receiving NIH funding are required to report on the sex, race, and ethnicity of participants enrolled in clinical trials. These reports contribute to the ongoing efforts to promote inclusivity and address health disparities among different populations.

Improving Women’s Health Through Research

The White House Initiative on Women’s Health Research, announced by President Biden and led by First Lady Jill Biden, signifies a renewed commitment to advancing women’s health research. The initiative aims to galvanize the federal government, private sector, and philanthropic communities to close research gaps, address health disparities, and pioneer the next generation of discoveries in women’s health.

Under this initiative, concrete recommendations will be delivered to the Biden-Harris Administration within 45 days, outlining actions to improve research on women’s health and maximize investments in this field. Priority areas of focus will be identified to ensure transformative outcomes, ranging from heart attacks in women to menopause and beyond. The initiative also seeks to engage stakeholders from the scientific, private sector, and philanthropic communities to drive innovation and foster collaborative partnerships.

By prioritizing research on women’s health, we can gain a deeper understanding of conditions and diseases that predominantly affect women, such as endometriosis, cardiovascular disease, and Alzheimer’s disease. This knowledge will enable healthcare providers to better prevent, diagnose, and treat these conditions, ultimately improving the lives of millions of women.

The establishment of the White House Initiative on Women’s Health Research and the ongoing efforts to promote inclusion in medical research mark significant milestones in addressing the historical underrepresentation of women in studies. Through policies and legislation, initiatives like the Women’s Health Initiative, and the monitoring of adherence to inclusion guidelines, progress is being made to close research gaps and improve women’s health outcomes.

Research plays a crucial role in understanding the unique aspects of women’s health and developing effective treatments and interventions. By prioritizing and investing in research on women’s health, we can empower women, healthcare providers, and researchers to make informed decisions and advancements that will positively impact the health and well-being of women across the nation. The White House Initiative on Women’s Health Research is a vital step towards achieving this goal and creating a future where women’s health is fully understood, supported, and prioritized.

What you can do! 

The Initiative is accepting written comments and input, we urge everyone to get involved. 

You can send in either a word document or PDF file to WomensHealthResearch@who.eop.gov

Related reading: 

  1. Endometriosis Signs and Symptoms: Everything You Need to Know
  2. Endometriosis Facts & Myths: Dispelling the Misconceptions
  3. Why was iCareBetter built?

References:

  1. https://www.whitehouse.gov/briefing-room/statements-releases/2023/11/13/fact-sheet-president-joe-biden-to-announce-first-ever-white-house-initiative-on-womens-health-research-an-effort-led-by-first-lady-jill-biden-and-the-white-house-gender-policy-council/
  2. https://www.whitehouse.gov/gpc/briefing-room/2023/11/17/launch-of-white-house-initiative-on-womens-health-research/
  3. https://www.whitehouse.gov/briefing-room/speeches-remarks/2023/11/13/remarks-by-president-biden-and-first-lady-jill-biden-establishing-the-first-ever-white-house-initiative-on-womens-health-research/
  4. https://orwh.od.nih.gov/toolkit/recruitment/history#:~:text=Inclusion%20Becomes%20Law&text=In%201993%2C%20Congress%20wrote%20the,as%20Subjects%20in%20Clinical%20Research.

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Endometriosis: Is it a Disability?

Endometriosis, a debilitating condition affecting millions of women globally, often prompts questions about its influence on daily life and work ability. This article provides an in-depth analysis of endometriosis, how it affects women’s work ability, and the possibility of qualifying for disability benefits.

Endometriosis is a medical condition that primarily affects women during their reproductive years, and is very prevalent, with over 80 million women diagnosed worldwide, typically between the ages of 20 and 40. Treatments such as surgery and medical management as well as physical therapy can alleviate some symptoms, but there is currently no definitive cure for the disease.

Endometriosis and Disability: An Intricate Relationship

The symptoms of endometriosis vary greatly among individuals. The most common symptom is pelvic pain, particularly during menstruation, sexual intercourse, bowel movements, or urination. Other symptoms include abdominal bloating, nausea, as well as infertility, among other symptoms. 

Endometriosis can significantly disrupt daily functioning due to associated symptoms such as pain, fatigue, and psychological distress especially during one’s menses (period) but is not always confined to that time of the month. Consequently, the disease might qualify as a disability under the Americans with Disabilities Act (ADA) in certain cases. However, it is important to know that the Social Security Administration (SSA) does not automatically classify endometriosis as a disability.

Endometriosis and Social Security Disability Benefits

Qualifying for Social Security disability benefits due to endometriosis is not straightforward. The SSA considers two primary factors when determining if an individual qualifies for SSDI (Social Security disability insurance) or SSI (Supplemental Security Income) disability benefits:

1. Does the individual’s condition meet (or equal) the requirements of a listed impairment?

2. If not, do the symptoms of endometriosis significantly interfere with the individual’s ability to function, to the point where they cannot perform any type of job safely?

Since endometriosis is not listed as a qualifying condition, sufferers cannot automatically meet the first criterion. However, they might still qualify for Social Security disability if their symptoms significantly impede their ability to work, what the SSA calls “substantial gainful activity,” or SGA.

How to Qualify for Social Security Disability for Endometriosis

To qualify for Social Security disability due to endometriosis, it must be demonstrated that the symptoms of the disease prevent the afflicted individual from performing their job. The SSA will then assess if there is any type of job that the individual can safely perform. This evaluation considers medical records, age, work experience and job skills, education, and residual functional capacity (the minimum work that can be expected from an individual).

Applying for Social Security Disability for Endometriosis

Applications for Social Security disability benefits can be made online, through a phone call to the Social Security’s national office, or in person at a local Social Security field office. Winning a disability claim for endometriosis can be challenging, but applicants can seek assistance from an experienced disability attorney or non-attorney representative.

Endometriosis and Employment: A Complex Scenario

While endometriosis can significantly impact an individual’s ability to work, it does not automatically lead to unemployment or early retirement. In fact, many women suffering from endometriosis are able to maintain their employment status, albeit with certain adjustments to accommodate their symptoms.

Work Ability and Endometriosis

A woman’s ability to work can be severely compromised by endometriosis, with the disease often linked to poor work ability at age 46. This decreased work ability can lead to increased absence from work due to health issues. However, despite the increased absenteeism, women with endometriosis often maintain an employment rate comparable to women without the disease. It makes you question why? 

Over the past few years, emphasis has been put on staying home if you are sick, as a safety measure for spreading disease, though many with endometriosis may not be able to afford days off of work either because financially they are unable, or there is worry about saying PTO for an unexpected turn of event such as a necessary surgery, or increased symptoms causing debilitating pain. So we suffer through expecting there to be worse days. Women in general, tend to minimize their own symptoms or question if they are “really that bad” as a result of societal influences.

Disability Retirement and Endometriosis

The emergence of disability retirement due to endometriosis is not common. Despite the debilitating symptoms of the disease, the risk of early retirement is not significantly higher for women with endometriosis compared to those without the condition. This finding is encouraging and demonstrates the resilience and determination of women battling this condition. Or, is it that those with endometriosis stay working longer because of the financial need and medical bills?

Conclusion

Endometriosis is a complex and debilitating condition that can significantly impact a woman’s ability to work. However, it does not inevitably lead to unemployment or early retirement per the literature, though that does not mean that those living with the condition are able to work feeling well or without worry about consequences of not working.  With appropriate medical treatment and workplace accommodations, we hope that not only can those with endometriosis keep working, but with a higher quality of life while working. 

Related Reading:

  1. Endometriosis Facts & Myths: Dispelling the Misconceptions
  2. Endometriosis Signs and Symptoms: Everything You Need to Know
  3. Endometriosis Signs and Symptoms: Everything You Need to Know

References:

  1. The Americans with Disabilities Act www.ada.gov
  2. Rossi, H., Uimari, O., Arffman, R., Vaaramo, E., Kujanpää, L., Ala‐Mursula, L., Piltonen, T.T., 2021. The association of endometriosis with work ability and work life participation in late forties and lifelong disability retirement up till age 52: A Northern Finland Birth Cohort 1966 study. Acta Obstetricia et Gynecologica Scandinavica 100, 1822–1829. 

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Finding an Excision Specialist: What you Need to Know

Finding a true excision specialist is difficult for many reasons, including the paucity of skilled surgeons and the financial burden that may come with when you find one that is a good fit for you.  So, the first step is to find the right surgeon and the second step is determining how to navigate the financial implications. It’s important not to do it the other way around because initial botched surgery and treatment can make it that much more difficult to find relief.  Surgery is never easier the second or third time around. 

There are a small handful of carefully monitored sites with very helpful information and a listing of qualified surgeons based mainly on patient outcomes feedback, none better than Nancy’s Nook. While there may be a few others that share patient experiences and some information, most are not well monitored or refereed, and thus, information and surgeon leads must be viewed with caution.  Nancy Petersen has a vested personal interest in endometriosis and a deep understanding of the disease based on her work for many years with Dr. David Redwine, a pioneer in the field.  Thus the information which is refereed by Nancy and her hand-picked editors forms a solid base.  However, patient feedback, while important,  is not the only way to determine who to pick as your surgeon.   

The degree of a surgeon’s true technical skills is not easy to judge,  especially if you are in the majority of not being medically trained yourself.  Review of resumes and asking questions such as where did you go to school or train or how many cases do you do leaves a lot to be desired.  It is simply not an accurate reflection, although knowing the surgeon’s background and pedigree can help.  So, what else can be done to help find the right surgeon for you?  

iCarebetter was created to help those in need find a specialist with a bit more objective information than patient recommendations alone. iCarebetter includes surgeons who are video-vetted by a peer review process.  This means that acknowledged experts review surgical videos submitted by surgeons who wish to be vetted and are objectively either verified or not as possessing a high level of surgical capabilities.  Of course, this does not reflect total patient management and bedside manner and more subjective skills.  However, you want someone who can get the surgery properly done at the highest possible level for your needs. There is something to be said about a surgeon who is not afraid of showing other, perhaps better, surgeons what they’ve got, so to speak.    

Additional related reading: Why was iCarebetter built?

Not too long ago, it used to be that when you showed up to your appointment and asked the surgeon what type of surgery they perform, you typically would hear ablation or excision. More recently, many more have adopted excision as the preferred method, or at least talk that way.  But outcomes are variable among those receiving “excision surgery,” why?  This article will help you better understand some of the key takeaways in finding the right surgeon for you.  Some are simply not at a high enough skill level to help you, and others do not walk the talk. 

Additional related reading: Laparoscopy: A Common Treatment for Endometriosis

Excision vs. Ablation

Excision is the removal of tissue diseased with endo, whereas ablation is the burning or fulguration of endo lesions and surrounding tissue and organs, usually using electrocautery. Research shows both may be effective for superficial endometriosis and not near delicate structures such as bowel and ureters; however, it is usually not possible to accurately determine which are superficial or deep infiltrating lesions based on looking at them.

While some patients do symptomatically improve with ablation surgery, clinically, it is recommended that excision is the preferred method because you really cannot know if a lesion invades deeper into the tissue, until you remove it. It is likely that those who have benefited from ablation surgery probably only had superficial lesions, and those who did not improve likely had more extensive endometriosis that was missed or not fully eradicated. While this is clinically accepted, we need more research to confirm this and show it truly is the preferred method.  The problem with designing an accurate research study for this question is that the skill of surgeons participating in clinical trials is highly variable, so the results can be completely wrong because it almost entirely depends on surgical skill.  More importantly, one size does not fit all, and everyone is different.  Hence, a truly expert surgeon who can determine and act appropriately on findings and nuances is critical to your personal success. 

Important terms and approaches 

  • Wide excision is a term you may hear which means that there is a wide margin of tissue that is removed to ensure that only healthy tissue remains. There is no consensus on this topic. Some surgeons will adopt wide excision, while others will remove the individual lesions, perhaps leaving micro-diseased tissue behind that is difficult to visualize during surgery. These areas may develop endometriosis in the future.  In an expert’s hands, it is a judgment call as to how wide any given area of excision should be.  There is a balance of too much and not enough, and this requires a high level of expertise to optimize benefits and minimize harm.
  • Combination of excision and ablation. The other consideration when it comes to excision surgery is that some surgeons adopt a combination of excision and ablation.  Some tissue will be excised for histological confirmation of the disease, but then many lesions may be ablated instead of excised.  This generally does not make sense unless the surgeon simply does not believe that excision is better.  The only exception is the ablation of tiny lesions on sensitive areas, such as the ovarian surface, where fertility preservation is a concern.
  • Incomplete removal of lesions.  Most general gynecologic surgeons will not be able to excise very many lesions and will handle them by fulguration or ablation.  Some surgeons may be able to excise the majority of lesions but do not have extensive training to remove all lesions.  Hopefully, your surgeon will advise you of their limitations prior to rather than after your incomplete surgery.  However, in some cases, endometriosis is not suspected prior to surgery, and a general gynecologist, who is most often not trained in higher-level excision techniques, is caught by surprise.  In that case it is better to biopsy, prove that endo exists, and refer to a specialist rather than poorly perform an incomplete surgery.

Complete excision, especially in a difficult case where there is a lot of disease or perhaps in case of distorted anatomy due to repeat surgery, will only occur with a surgeon who has been additionally trained not just in MIGS (minimally invasive gynecologic surgery) but in endo excision per se.  The main surgeon has to be an expert because it is never possible to predict how much endo there is, even if imaging scans are negative.  Beyond that, if the main surgeon is not trained to perform bowel or urologic surgery, then a well-coordinated team is mandatory.  The problem is that this coordination is not too tightly organized in many centers.  Ask questions about who can do what, if any required supporting surgeons are in surgery from the beginning or “on call” when needed.  The latter does not often work out too well because of other commitments that might be conflicting.  

What if I Cannot Afford to see an Excision Specialist?

It is true that many of the surgeons that specialize in excision surgery are out-of-network providers. However, in the past couple of years there have been more surgeons that do take insurance and hopefully, with legislative efforts and more education, this trend will continue to grow. 

That being said, there is a good reason why many do not take insurance, and even if you have the option of an in-network provider, it may not be the right surgeon for you. Currently, there is no difference in the coding when undergoing laparoscopic or robotic surgery for endometriosis that discriminates between ablation versus excision. Ablating lesions takes far less skill, time and effort than excision does. Meaning, that an in-network surgeon who performs an ablation surgery that takes one hour will get paid the same as an in-network surgeon who does an excision surgery that takes four hours. Becoming a trained excision specialist costs money to the provider to undergo extra training to be able to perform these types of procedures, and even more training to become an expert in robotics.

Until our payment, insurance, and coding systems catch up to what is required, we will likely not see a dramatic shift in those who take insurance.  

Aside from the financial difference, those who are in-network may not be able to spend the amount of time you may want during office visits to discuss the details of your surgery and your overall case as those who are out-of-network. Out-of-network doctors are usually able to provide longer visits to address your concerns in depth instead of the standard 15-20 minutes you typically get with your regular OBGYN. Some choose cost over this important treatment planning time, but there are many people who value a personalized approach which takes more time over the cost of the surgery.   It is not just excision surgery that will get you to where you want to be, and this personalized treatment planning includes very important discussion about pre-operative and post-operative healing options.  

Whatever you choose, you want to feel comfortable with your surgeon and find the right fit for you. 

Other Considerations: Some Tips on Navigating the System

  • Change your insurance provider.  I know this is easier said than done, but for those with HMOs who are only allowed to stay within a small network, it may be worthwhile to talk to your employer, or partner (if applicable), or do some research on what other insurances are available to you.  PPO plans include their list of in-network providers but also often provide some reimbursement for out-of-network providers, especially if their surgeons are not at the skill level that you need or are not within a reasonable geographic range. Open enrollment is typically once a year, or when you change jobs, or due to other qualifying life-changing events.   So consider this as an option that may allow you to have more latitude and choice when planning for surgery.
  • Work with your insurance company. This does not always work, and is time-consuming, but can have a big payoff at the end. There have been patients who have communicated and worked with their insurance companies when there is no available specialist around to cover your out-of-network provider services. While this has worked for some, be ready for a time commitment and likely many phone calls to get to the person who can help you.  
  • Ask the doctor you have selected.   Some excision specialists have been helping patients with this insurance negotiation conundrum for many years. Because of that, some have teams that help you get an exception and lower your out of pocket costs tremendously.  
  • Adopt a new perspective. Lastly, this will not necessarily save you money, but looking at your surgery as an investment in your health may make it seem more doable. We often do not think twice about financing $30-$40k on a car or the thousands of dollars we spend on “stuff,” but we often hesitate when it comes to our health.  Without health, nothing else matters. For many, excision surgery has been life-changing, and thinking of paying for your surgery as an investment in your health, may be the best thing for you.  Again, while upfront costs may seem high, a concerted effort to find the right surgeon, advocate for yourself, and ideally find a surgeon’s office that can help you negotiate and advocate can lead to lower final out-of-pocket costs than you might think. 

Whatever route you take, it needs to be the best route for you, with a full understanding of the pros and cons. Take your time when finding the right surgeon, and don’t rush into something you are not comfortable with. 

Additional reading: 7 Ways to Prepare For First Endometriosis Specialist Appointment

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Your Guide to Supporting a Loved One Through the Holidays: The Ultimate Endometriosis Resource List Updated and Revised

The holiday season can be a joyous time filled with festivities, but for individuals navigating the challenges of endometriosis, it can also present unique hurdles. Supporting a loved one with endometriosis during this time involves not only empathy but also understanding the complexities of the disease. To aid both those directly affected and their support systems, a plethora of resources are available, ranging from insightful blogs and informative books to engaging movies and podcasts. These tools not only offer a wealth of knowledge about endometriosis but also provide a platform for individuals seeking a better understanding of the condition or those desiring to support their loved ones effectively. 

In this guide, we will explore a curated selection of resources, offering both emotional support, educational insights, and even some ideas for your holiday shopping list to help individuals navigate the holiday season with a heightened awareness of endometriosis and a supportive approach to those impacted by this often misunderstood condition.

Understanding Endometriosis

For those of you unfamiliar with our blog, endometriosis is a chronic disease that primarily affects women (XX) of reproductive age. It involves the growth of endometrial-like tissue (the tissue that lines the inside of the uterus) outside of the uterus, leading to inflammation and pain, particularly during menstruation, though many other symptoms may be present. 

For more information on symptoms of endometriosis, read our blog 20 Signs and Symptoms of Endometriosis.

Despite being a common condition, endometriosis is often misdiagnosed or overlooked, leading to many women suffering in silence. However, with the right information, supportive community, and access to informed medical providers, it is possible to manage the condition and lead a fulfilling life.

Podcasts on Endometriosis

Podcasts are an excellent way of gaining insights and information about endometriosis in a convenient and accessible format. Here are some podcasts that delve into various aspects of the disease, from personal stories to expert opinions:

  • “iCareBetter: Endometriosis Unplugged”: Hosted by yours truly, is a video podcast (Spotify & Youtube) that focuses on expert interviews and patient stories with a few bonus episodes of specialists who treat conditions that often coexist with those with endometriosis. We have completed season 1 and hope to have season 2 coming in 2024!
  • “In Sixteen Years of Endometriosis”: Hosted by two witty best friends who share their personal journey with the disease, this podcast offers a blend of humor, vulnerability, and accurate information.
  • “The Cycle”: This podcast features stories of people living with endometriosis from around the world, providing practical ways to cope with the disease.

For more podcasts about endo, check out our previous blog here. 

Books about Endometriosis

Reading about endometriosis can provide a comprehensive understanding of the disease. Here are some books written by medical experts and those living with the condition:

  • “Beating Endo: How to Reclaim Your Life from Endometriosis”: Written by Iris Kerin Orbuch, MD, and Amy Stein, DPT, this book provides actionable insights into understanding and managing the disease.
  • “Heal Endo”: By Katie Edmonds, (F)NTP  provides a book that is patient focused with a more indepth understanding of the science balanced by actionable items that range from surgery to dietary and lifestyle changes. 
  • “The Endometriosis Health and Diet Program”: Authored by Dr. Andrew S. Cook, MD, FACOG, and Danielle Cook, MS, RD, CDE, this book focuses on treating endometriosis holistically, offering a comprehensive program tailored to individual needs.
  • “Know Your Endo: An Empowering Guide to Health and Hope With Endometriosis”: Authored by Jessica Murnane, this book provides tools and strategies to manage chronic pain associated with endometriosis.
  • “The Endo Patient’s Survival Guide: A Patient’s Guide to Endometriosis & Chronic Pelvic Pain”: This book by Andrew S. Cook, MD, FACOG, Libby Hopton, MS, and Danielle Cook, MS, RD, CDE, is a companion guide for patients, offering insights into diagnosis, treatment options, and achieving optimal relief.

Videos and Documentaries about Endometriosis

Visual content can help in understanding complex information about endometriosis. Several documentaries and movies have been produced to increase awareness about the disease.

  • “Below the Belt”: A documentary from Shannon Cohn who created “Endo What?” focuses on the journey of several women seeking an endometriosis diagnosis and the challenges they face. “Below the belt” is not only an empowering film for educating the masses, it has become a tool for legislative change. A must see for everyone. 
  • “All about NINA”: A drama highlighting the experience of a woman, Nina Geld, managing her life with endometriosis.
  • “Endo what?”: A documentary featuring women living with endometriosis and experts discussing treatment options.
  • “The painful truth”: This film focuses on endometriosis and adenomyosis, another related condition.
  • “A thousand needles”: A short documentary about the impact of endometriosis on a woman’s life.
  • “End-o”: A short film showcasing the life of a young woman, Jaq, living with endometriosis.
  • “The resilience of women in pain”: This short film focuses on Rose, a woman suffering from endometriosis and chronic illness, and her journey towards resilience.

Your Endo Shopping List: Comfort Tools for Loved Ones

In case you need to do some last minute shopping and want to show your loved ones you understand, here are some essential items that have proven useful for many. While these tools may not be able to stop this awful disease, they may provide some degree of comfort and relief when things get bad. Whether you are prepping for surgery, or just need some handy tools, here are some of my favorite items. 

  • Wedge Pillow. This is a must for those preparing for surgery during recovery. I only found this at my 3rd (and hopefully last) surgery and it was a game changer. When your belly is full of air, tender, and you don’t feel like moving (or sitting up at the very least), this helps to provide relief for recovering in bed or on the couch and is great if you are a side or back sleeper.
  • Heating pads. This is probably the number one item most endo warriors have – likely at home and work. They are always handy to have wherever you are, and for a more personalized gift, ETSY.COM has some amazing endo swag (including heating pads).
  • My Obi Apollo. This is a TENS unit with heat and multiple programs to help with cramps and reduce pain. To learn more about how TENS may be helpful, check out our blog here.
  • Squatty Potty. Everyone should have one. This is the gift that no one really wants, but secretly is so happy when they get one. It is essential for optimal toileting for everyone, but especially if you have endometriosis. Constipation and pelvic floor dysfunction are two issues the majority of those with endometriosis suffer from and this tool can make a world of a difference for toileting…. 

Until recently, endometriosis was not a term most people were familiar with, unless you are suffering. It is amazing how this is shifting and so many more people are familiar with the term, but may not understand how impactful this disease is to one’s life. Finding the right surgeon is key to address the lesions, but having tools to help in the meantime is crucial. More importantly, your loved one will most appreciate the effort you made to educate yourself about their disease, especially during the stress the holidays may bring. Give them the gift of understanding and empathy this year, and maybe something to help their pain in the meantime. 

Please note: We do not have financial affiliations with any of these products listed above.

Related Reading:

  1. Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery
  2. Endometriosis Facts & Myths: Dispelling the Misconceptions
  3. What You Need to Know About Endometriosis Excision Surgery
  4. Managing Endometriosis: What You Need to Know. 

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Endometriosis Guidelines: A Closer Look at a Potential Source of Confusion in Treatment Debates

Treatment strategies for endometriosis vary widely, with the primary objective being to alleviate pain and enhance fertility where necessary. However, the confusion and inconsistency in recommendations is alarming.  This article reviews and comments on some of the key current management strategies supported by the American College of Obstetrics and Gynecologists (ACOG), by way of Bulletin #114 (2010 and reaffirmed in 2022) and Bulletin #760 concerning adolescents (2018 and reaffirmed 2022). In the following posts, we will review other guidelines to give a more in-depth look at these inconsistencies and what you may face as you navigate your journey with endometriosis. 

Other internationally recognized bodies have published various guidelines seeking to help clinicians with the diagnosis and treatment of endometriosis. Unfortunately, there is significant discrepancy between some of the recommendations due to the complex nature of the disease and limitations of research to date. Many patients will look to online resources and forums after seeing providers and not seeing results. What they may be surprised to find is that information on sites dedicated to endometriosis are often inconsistent with what is proffered by different guideline resources. 

Surgery

Surgery is considered a cornerstone in the management of pain and infertility associated with endometriosis. The timing of surgery and the type of surgery recommended varies between guidelines. However, it is illuminating to note that ACOG guideline Bulletin #114 states that “definitive diagnosis of endometriosis only can be made by histology of lesions removed at surgery.”

Minimally invasive surgery is highly preferred over open surgery (laparotomy) due to less pain, shorter hospital stay, quicker recovery, and better cosmetic results. However, a high level of skill and expertise is required to perform these procedures, whether it be laparoscopic or robotically assisted surgery. Despite better technology inherent in robotic surgery, outcomes research does not clearly show which modality is better overall.  However, the skill of the surgeon likely trumps the surgical tools used. Robotic surgery may be better suited for particularly difficult cases involving severely distorted anatomy due to advanced endo or scarring from repeat surgeries.  

The excision of endometriosis is widely recommended for patients with endometriosis-associated pain. However, there is ongoing debate on the preferred surgical technique (ablation versus excision) due to lack of conclusive evidence. Currently, the studies that look at excision surgery vs. ablation have significant limitations, potentially due to variation in the skill and training of the surgeons involved in these studies.  Meaning, studies to date may not have been done by true excision specialists and resulted in incomplete removal thereby skewing the research results.  This variation in surgeon expertise is a common plight affecting surgical procedure outcomes research. 

In ovarian endometriosis (endometriomas or chocolate cysts), minimally invasive excision of endometriomas is superior to drainage and ablation in terms of reducing recurrence of dysmenorrhoea, dyspareunia, cyst recurrence, and the need for further surgical interventions. 

In cases where women have completed their family planning and failed to respond to conservative treatments, hysterectomy with simultaneous excision of endometriotic lesions is considered the last resort. However, except for cases in which there is coexisting adenomyosis, hysterectomy is not necessarily required for pain relief purposes.  Each situation should be highly individualized. 

Medical Management of Endometriosis

While surgery is an effective treatment strategy and helps many patients, medical management currently plays a crucial role in managing symptoms and preserving fertility. These treatments primarily focus on pain management, hormonal suppression, and birth control.

Pain management is a critical aspect of endometriosis treatment. Non-steroidal anti-inflammatory drugs (NSAIDs) are widely used for symptomatic treatment of dysmenorrhea and acyclic pelvic pain. In fact, in their article discussing dysmenorrhea and endometriosis in adolescents, without any workup, ACOG believes that the majority of adolescents have primary dysmenorrhea which is defined as painful menstruation in the absence of pelvic pathology and recommends first line-therapies such as NSAIDs and birth control. The question is: without undergoing a definitive workup and assessment (surgery) for endometriosis and knowing that imaging is insufficient for diagnosis – how is it determined they do not have pelvic pathology? Furthermore, ACOG considers those that respond symptomatically to birth control pills and NSAIDs as a confirmation of primary dysmenorrhea, though some people with endometriosis also respond symptomatically to birth control pills and NSAIDs. 

Hormonal suppression, through the use of progestins, combined oral contraceptives, micronized progesterone, or Gonadotropin-releasing hormone (GnRH) analogues, is a common treatment strategy. This recommendation assumes that estrogen is responsible for endometriosis, but this is based on an incomplete understanding of endometriosis genesis and progression. Hormones are clearly involved but, based on increasing molecular evidence, this is not the sole factor in promoting growth of endometriosis. 

Birth control pills, specifically combined oral contraceptives, are often used as a first-line therapy for endometriosis-associated pain. This works by suppressing ovulation, which may help slow the growth of endometriotic tissue but has not been proven to induce regression or resolution. 


GnRH analogues are recommended as second-line treatment options for endometriosis-associated pain. They work by suppressing the production of estrogen, thereby theroretically reducing the growth of endometriotic tissue. Along these lines, ACOG states that “there is no data that support the use of preoperative medical suppressive therapy,” yet in clinical practice, many individuals are offered these medications inconsistently related to consideration or timing of surgery. Additionally, their level B evidence (second level) recommendations state “After an appropriate pretreatment evaluation (to exclude other causes of chronic pelvic pain) and failure of initial treatment with OCs (oral contraceptives) and NSAIDS, empiric therapy with a 3-month course of a GnRH agonist is appropriate.” It can be argued that this is extremely problematic given that there is no conclusive data to support the use of these medications prior to surgery. Finally, there is a significant  risk of short and potentially long term side effects and complications. 

Complementary Therapies

Complementary therapies such as dietary interventions, acupuncture, and electrotherapy are increasingly being recognized as potential adjunctive treatments for endometriosis. Quite a bit is evidence supported, but more research is needed to fully establish their efficacy and safety. Thus guidelines do not routinely address such options, leaving patients to their own devices and trial and error.  

In conclusion, the management of endometriosis requires a multi-faceted approach, incorporating both surgical and medical treatments which will be variable from patient to patient. In the past few years, there have been some improvements in the amount of research as well as advocacy. Finding a knowledgeable specialized surgeon and care team is of utmost importance.  The majority of OBGYNs do not focus on endo, have not undergone further specialized training and generally align with the guidelines set forth by ACOG, largely driven by perceived medico-legal concerns related to standard of practice.. Furthermore, other guidelines seem to differ in their opinions and recommendations regarding medical management and surgery, so stay tuned for more information.

Related reading:

  1. Find an Endometriosis Specialist for Diagnosis, Treatment, & Surgery
  2. Why was iCareBetter built? 
  3. What You Need to Know About Endometriosis Excision Surgery

References:

  1. Bulletins–Gynecology, A. C. o. P. (2000). ACOG practice bulletin. Medical management of endometriosis. Number 11, December 1999 (replaces Technical Bulletin Number 184, September 1993). Clinical management guidelines for obstetrician-gynecologists. Int J Gynaecol Obstet, 71(2), 183-196. https://doi.org/10.1016/s0020-7292(00)80034-x 
  2. ACOG Committee Opinion No. 760: Dysmenorrhea and Endometriosis in the Adolescent. (2018). Obstet Gynecol, 132(6), e249-e258. https://doi.org/10.1097/AOG.0000000000002978 

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Unraveling the Connection Between Endometriosis and Autoimmune Diseases

Endometriosis causes pain, multiple bowel symptoms and infertility, among many other debilitating symptoms, in about 10% of women, mostly in the reproductive age range. Developing research has shown that there is a link to various autoimmune conditions. 

Understanding Endometriosis

Endometriosis is a chronic gynecological disorder characterized by the presence of endometrial-like tissue growing outside the uterus. This means the cells look like those which line the inner part of the uterus but differ markedly in multiple ways at the molecular level.  The more we find out the less it is clear what the origins are.  However, they are likely partly genetic and partly based on other multiple influences of the environment on your body and genes. 

Read more: What causes endometriosis?

The Immune System’s Role

Research suggests that abnormalities in the immune system may play a key role in the development of endometriosis. These abnormalities could prevent the immune system from effectively clearing ectopic endometrial cells, regardless of how they get there, allowing them to implant and grow outside the uterus. This hypothesis suggests that endometriosis might be, at least in part, an immunity-associated disorder.

Furthermore, endometriosis is often associated with a chronic inflammatory response, triggered by the presence of ectopic endometrial-like cells. This inflammation, coupled with the immune system’s inability to effectively remove ectopic cells, could partly explain the chronic pain often associated with endometriosis.

Autoimmune diseases occur when the immune system mistakenly attacks the body’s own cells, viewing them as foreign invaders. The link between endometriosis and autoimmune diseases is still being explored, but multiple studies suggest that women with endometriosis may have a higher risk for certain autoimmune diseases.  It is not clear if endo carries a risk of developing autoimmune diseases or if the reverse is true or if they simply share common molecular mechanisms which results in both potentially occurring in any given individual.  At this point it is important to stress that an “association” does not mean “cause”. 

This review aims to delve into the current state of research on the association between endometriosis and autoimmune diseases. It presents key findings from population-based studies, discusses the potential implications, and highlights areas for future research.

Systemic Lupus Erythematosus (SLE) and Endometriosis

Systemic Lupus Erythematosus (SLE) is an autoimmune disease characterized by inflammation and damage to various body tissues, including the skin, joints, kidneys, and heart. Some studies have suggested a positive association between endometriosis and SLE.

One study suggested a seven-fold increase in the odds of having SLE among women with endometriosis. However, the study relied on self-reported diagnoses, which may introduce bias. A more recent cohort study found a more modest but still significant elevation in SLE risk among women with endometriosis.

Read more: The Hidden Connection Between Endometriosis and Systemic Lupus Erythematosus

Sjögren’s Syndrome (SS) and Endometriosis

Sjögren’s Syndrome (SS) is an autoimmune disorder characterized by dry eyes and mouth, often accompanied by other systemic symptoms. Several studies have investigated the potential link between SS and endometriosis.

A meta-analysis of three case-control studies found a 76% higher odds of SS in women with endometriosis. However, these studies had small sample sizes and wide confidence intervals, indicating a need for further research. Confidence intervals describe the range of results around a measurement which indicate how accurate the conclusion might be.  The tighter it is among measurements the better. 

Rheumatoid Arthritis (RA) and Endometriosis

Rheumatoid Arthritis (RA) is a chronic inflammatory disorder affecting many joints, including those in the hands and feet. Some studies have suggested a link between endometriosis and an increased risk of developing RA.

One meta-analysis, for example, found a 50% increased risk of RA among women with endometriosis. Again, the studies included in the analysis had limitations, including small sample sizes and wide confidence intervals.

Autoimmune Thyroid Disorders (ATD) and Endometriosis

Autoimmune thyroid disorders (ATDs), including Graves’ disease and Hashimoto’s thyroiditis, occur when the immune system attacks the thyroid gland, leading to either overactivity (hyperthyroidism) or underactivity (hypothyroidism) of the gland.

A meta-analysis of three case-control studies suggested a non-significant increase in the odds of ATD in women with endometriosis. However, the studies had high heterogeneity and low-quality scores, suggesting that further research is needed.

Coeliac Disease (CLD) and Endometriosis

Coeliac disease (CLD) is an autoimmune disorder where ingestion of gluten leads to damage in the small intestine. Some studies have suggested a possible link between endometriosis and CLD.

A meta-analysis of two case-control studies found a four-fold increase in the odds of CLD among women with endometriosis. Again, these studies had small sample sizes and wide confidence intervals, indicating a need for further research.

Multiple Sclerosis (MS) and Endometriosis

Multiple Sclerosis (MS) is a chronic disease that attacks the central nervous system. Current research on the association between MS and endometriosis is limited and inconclusive, with some studies suggesting a possible link while others finding no significant association.

Inflammatory Bowel Disease (IBD) and Endometriosis

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, is characterized by chronic inflammation of the gastrointestinal tract. Some studies indicate a possible association between IBD and endometriosis.

One study found a 50% increase in the risk of IBD among women with endometriosis. However, the study had a small sample size and the confidence interval was wide, indicating a need for further research.

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

The Bigger Picture

While the evidence for an association between endometriosis and certain autoimmune diseases is compelling, it’s important to emphasize that correlation or association does not imply causation. Further research is needed to determine whether endometriosis actually increases the risk of developing autoimmune diseases or vice versa, or whether the two share common risk factors or underlying mechanisms.

The potential link between endometriosis and autoimmune diseases highlights the importance of a comprehensive approach to women’s health. For women with endometriosis, being aware of the potential increased risk of autoimmune diseases can inform their healthcare decisions and monitoring.

The Path Ahead

The intersection of endometriosis and autoimmune diseases is a complex and evolving field of research. Better understanding the relationship between these conditions could help improve diagnosis, treatment, and ultimately, the quality of life for patients with endometriosis.

By continuing to explore this connection, we are gaining new insights into the pathophysiology of endometriosis and autoimmune diseases, potentially leading to novel treatments and preventive strategies. 

Reference:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6601386/

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Endo-Fighting Microbiome Optimization: Research-based Tips

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

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

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

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

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

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

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

Antibiotics:

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

Probiotics:

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

Prebiotics:

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

Dietary modifications:

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

Immunomodulation:

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

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

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

References:

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

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

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Why was iCareBetter built?

A message from Dr. Saeid Gholami, the founder and CEO at iCareBetter:

The story behind the movement

When I used to practice as a primary care doctor, I saw patients’ struggles to find doctors that could do proper endometriosis surgery. Endometriosis patients often came back to our clinic month after month without change in their pain and suffering. Many patients had multiple failed surgeries. That was because almost all gynecologists claimed expertise in endometriosis surgery. Unfortunately, patients could not differentiate truly skilled gynecologists from others for treating endometriosis. One specific patient that I still think of after a decade was a thirty-five years old lady with rectal bleeding during her periods. I recall her coming back every month until everyone believed she was seeking attention. And no one could help her. We tried hard to find endometriosis surgeons for the patients, but no doctor would be able to show enough knowledge and expertise to earn our trust. Some of them claimed endometriosis expertise, but after a couple of questions, we realized that they could not manage the complexity of this disease.

Someone needs to stand up and build a solution when there is a problem. That is how the world has improved since the beginning of humanity. And it was our turn to make something to enhance the world of endometriosis patients. We created iCareBetter to help patients find doctors who possess the knowledge and surgical skills needed for endometriosis treatment. iCareBetter makes the search for endometriosis doctors much more effortless and removes the randomness of finding an endometriosis specialist. By having a platform of peer-vetted endometriosis surgeons, patients can focus on finding a doctor that will match their criteria and personal needs. Criteria such as location, cost, team, and areas of expertise can define a patient’s path to recovery. And patients do not have to worry about the doctor’s basic understanding, empathy, and skills of endometriosis care.

Searching for an endometriosis surgeon is very hard. Most of the time, you have no idea about their surgical skills and whether they will be able to treat your case. iCareBetter evaluates gynecology surgeons for their skills in managing different types and locations of endometriosis. Their surgical expertise is peer vetted, so their ability to do safe surgery. We bring endometriosis specialists closer to patients. 

What is iCareBetter’s mission? 

To help endometriosis patients receive efficient care. To educate patients on endometriosis, to better understand endometriosis and patient’s needs. Patients wait years to receive a diagnosis, are sent to various specialties, and undergo multiple surgeries, and very few people take their pain seriously. iCareBetter mission is to improve endometriosis patients’ lives by providing them with what is needed the most; doctors that can handle each individual’s unique case.

Who is behind iCareBetter? 

I, Dr. Saeid Gholami, am the founder of iCareBetter. I have training as an MD, MBA, and MS in Digital Technology. My training is not in OBGYN, and at the moment, I do not provide care to patients. I founded iCareBetter with my financial resources and then had some family and friends invest in the company to support us. None of the investors are related to the current doctors on the website. And none of the doctors on the website have any ownership or leadership position in the company.

Last words

Like every other life-changing initiative, ours started with a personal story and someone who wanted to make a change. My personal goal has been to improve patients’ lives at the minimum cost for them. And we are just at the beginning of the road. There are many patients with endometriosis who need help. And we have several problems to solve for the patients and the community. Nothing will stop us as long as endometriosis patients use iCareBetter to find hope and care for their debilitating pain and suffering.

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

Learn How People Feel Endometriosis Pain in Different Locations

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

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

Get the pdf Version of this article

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

Endometriosis signs and Symptoms

Table of Contents

1- Where is Endometriosis Pain Felt?

2- What Does Endometriosis Pain Feel Like?

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

4- Different Types of Pain and Their Origins

5- How Does Endometriosis Pain Differ From Menstrual Pain?

6- Endometriosis Pain Treatment Options

7- Do You Have Endometriosis Pain?

Where is Endometriosis Pain Felt?

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

What Does Endometriosis Pain Feel Like?

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

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

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

Why Do Endometriosis Patients Experience Different Types of Pain?

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

Endometriosis After Menopause

Different Types of Pain and Their Origins

Pelvic Pain

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

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

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

Back Pain

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

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

Leg Pain

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

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

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

Pain During Intercourse

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

  • Cervix
  • Uterus
  • Pelvic cavity
  • Rectovaginal septum

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

Endometriosis Painful Bowel Movements

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

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

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

Causes of Endometriosis

How Does Endometriosis Pain Differ From Menstrual Pain?

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

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

Endometriosis Pain Treatment Options

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

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

Natural Treatment for Endometriosis Pain:

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

Medical Treatment:

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

Surgical Treatment

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

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

Do You Have Endometriosis Pain?

What type of endo pain do you have? And how would you describe it? If you want to find an experienced endometriosis specialist or a different kind of endo provider near you, you can do so on our platform, iCareBetter.

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How Do I Know If I Have Endometriosis? Endometriosis Signs

Learn Endometriosis Signs & Symptoms & What to Tell Your Dr.

Pelvic pain is common for most women during their period. However, for some – this time of the month comes with excruciating pain due to the medical condition – endometriosis (also known as endo for short). Believe it or not, endometriosis signs extend beyond just the debilitating pain, although, that’s the hallmark symptom of this inflammatory disorder.

If you think you might have endometriosis, it’s important to have a solid foundation of information before you see your doctor for a possible endo diagnosis. Keep reading to learn what endometriosis is and what are the most common signs and symptoms of this condition.

What Is Endometriosis?

Pronounced (en-doe-me-tree-O-sis), endometriosis is a chronic inflammatory disorder of the pelvis where tissue similar to that normally grows inside your uterus, grows elsewhere instead, usually on the outside of it. The endometriosis tissue can block fallopian tubes, cover your ovaries, and even line the organs of your pelvis. 

Endometriosis can cause intense pain and fatigue, which makes it a disabling inflammatory condition for many women. Pain from endometriosis can be so intense that sometimes even medication cannot touch it. Other organs commonly involved include the fallopian tubes, bowels, cervix, ovaries, vagina, and pelvic tissue. Rarely, endo may also affect distant organs. Learn more about the disorder in our previous article, “Endometriosis 101: Covering the Basics”.

What Are Endometriosis Signs and Symptoms?

Sadly, endometriosis is an inflammatory disorder that often goes undiagnosed for years because the hallmark symptoms are things that some women take for granted as “normal”: heavy bleeding and pain during periods. If you think you might have endometriosis, it’s important that you know what to look for and when you should notify a doctor. The following are seven common signs of endometriosis:

Dysmenorrhea (painful periods)

Intense pelvic or abdominal pain is one of the most common symptoms of endometriosis. Endometriosis pain is often described as a sharp or stabbing sensation. During menstruation, women with endo may experience very painful periods because the endometrial tissue swells and bleeds every month, just like the uterine lining would. However, because this process is occurring outside the uterus, blood is not easily shed, and this pressure can cause extreme cramping that is much more intense than typical period cramps. Period pain should not disrupt your daily life, so if it does, you need to let your doctor know or find a qualified endo specialist.

Menorrhagia (heavy menstrual bleeding): 

While many women bleed heavily during their period, endometriosis can cause significant blood loss. How do you know if your amount of bleeding is excessive? Watch for these signs:

  1. Passing large clots
  2. Period goes on longer than a week
  3. Bleeding through a pad or tampon in an hour
  4. Too fatigued to carry out daily activities

If you have these symptoms, you may have menorrhagia and should contact a gynecologist. Menorrhagia is sometimes caused by endometriosis, and it can cause anemia and severe fatigue.

Dyspareunia (pain during or after intercourse): 

When endometriosis is the cause of painful intercourse, the woman may not experience the pain upon entry, only upon deep penetration. There can be physical and psychological causes of this condition, and endometriosis may be the culprit, as tissue builds up on the other side of the lower uterus or vagina – and sexual intercourse can stretch the tissue. You should talk to an experienced physician if you have pain during or after intercourse.

Chronic Pelvic Pain: 

While the inflammatory condition usually involves pain during menstruation, endometriosis pain can occur at any time of the month. Endometriosis causes an increase in pressure due to the excessive tissue in the pelvic cavity. This can cause a chronic pain condition that might be felt exclusively in the pelvis or manifest as abdominal or back pain. 

Ovarian Cysts: 

There is a type of endometriosis that causes endometriomas (also known as chocolate cysts) to grow on your ovaries. These cysts are non-cancerous but may become large and painful. Also, women who have these may also have other endometrial growths in the abdominal or pelvic areas. 

Infertility: 

Up to about half of women who have problems with fertility also have endometriosis. Furthermore, up to 50 percent of women who have endometriosis are unable to get or stay pregnant. The relationship between these conditions isn’t always clear as many factors can impact fertility. However, in the event that the endometriosis tissue blocks the reproductive organs, there is a clear connection. Treating the condition can increase your odds of having a baby. If these fertility issues are affecting you, contact an endometriosis specialist. 

Bowel/Bladder Problems: 

Bathroom visits may be problematic if you have endometriosis lesions growing near your bladder or bowels. And if you are experiencing difficulty with urination or bowel movements or bleeding in the bowel – these may be signs of endometriosis. Also, if you have painful urination, blood in your stool, nausea, or hyper urgency to urinate – you should tell your medical provider immediately. 

When to Call Your Healthcare Provider

Share with your healthcare provider any of the following endometriosis signs and symptoms:

  • Pain. Pain is the most common sign of endometriosis, and it can be present:
    • During or after sex
    • With bowel movements
    • When urinating during your period
    • As chronic abdominal, lower back, or intestinal pain
    • Similar to menstrual cramps that get worse gradually
  • Bleeding or spotting between periods
  • Difficulty getting pregnant or infertility
  • Digestive issues or stomach problems such as diarrhea, constipation, bloating, or nausea—especially during your periods

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