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10 months ago Endometriosis , Endometriosis Education No comment

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.  

Table of contents

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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10 months ago Bowel Endometriosis , Endometriosis , Endometriosis Education No comment

Does Endometriosis Cause Bowel Problems

Endometriosis, a chronic medical condition that affects up to 10% of women worldwide, has a significant impact on various aspects of a woman’s life, including her bowel health. This article will explore the question:

“Does endometriosis cause bowel problems?”

and delve into the symptoms, causes, diagnosis, and treatment of this condition.

Table of contents

What is Endometriosis?

Endometriosis is a medical condition in which tissue resembling the endometrium, the lining of the uterus, grows outside of the uterus. This tissue can grow on various organs, including the ovaries, fallopian tubes, bladder, and even the bowel.

Endometriosis and Bowel Problems

Endometriosis can affect the bowel in various ways, leading to numerous digestive issues. Specifically, endometriosis can grow on or inside the bowel walls, causing symptoms that are often mistaken for other conditions like Irritable Bowel Syndrome (IBS).

Superficial and Deep Bowel Endometriosis

Bowel endometriosis can present in two forms:

  • Superficial Bowel Endometriosis: This is when endometriosis is found on the surface of the bowel.
  • Deep Bowel Endometriosis: This form of endometriosis penetrates the bowel wall.

In some cases, rectovaginal nodules can start as superficial endometriosis and progress to infiltrate the bowel wall.

Read More: Can Endometriosis Cause Bowel Issues?

Recognizing the Symptoms

The symptoms of bowel endometriosis are similar to those of IBS. However, they can vary with the menstrual cycle, worsening in the days before and during a period. Some common symptoms include:

  • Pain with defecation (dyschezia)
  • Deep pelvic pain during sex (dyspareunia)
  • Rectal bleeding during a period

If you experience these symptoms, it’s crucial to discuss them with your doctor. They may choose to use several techniques for diagnosis, such as a vaginal examination, ultrasound, sigmoidoscopy, laparoscopy, CT, or MRI scan.

Bowel Endometriosis: Causes and Risk Factors

While the definitive cause of endometriosis remains unknown, several potential contributing factors include hormonal imbalances, immune system problems, and genetic factors. Researchers have also found links to genes and stem cells, inflammation, and estrogen levels.

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

Diagnosing Bowel Endometriosis

Diagnosing bowel endometriosis can be challenging due to its similarities with other conditions like IBS. In addition to a physical examination and medical history review, doctors may suggest imaging tests such as transvaginal or transrectal ultrasound, magnetic resonance imaging (MRI), laparoscopy, or barium enema.

Treatment Options for Bowel Endometriosis

The treatment for bowel endometriosis typically involves a combination of painkillers, hormone treatments, and surgeries, depending on the severity of the symptoms. Surgery is usually recommended for bowel endometriosis, with the surgical options varying based on the severity of the condition and the areas affected.

There are three main surgery options for bowel endometriosis:

  • The affected segment of the bowel is removed, and the bowel is rejoined (re-anastomosis).
  • For smaller areas of endometriosis, the disc of affected bowel is cut away, followed by the closure of the hole in the bowel.
  • Affected areas can be “shaved” off the bowel, leaving the bowel intact.

Post-Surgery Recovery and Follow-up

Recovery after any surgery varies depending on the individual. After laparoscopic bowel surgery, you can generally expect to go home within four days. Bowel function may be altered after surgery, particularly with a full resection (re-anastomosis). This does improve over time, although watching your diet to see which food aggravate or improve the situation may be helpful.

The Impact of Delayed Treatment

If bowel endometriosis is not treated properly and promptly, the disease may progress, and quality of life significantly decreases. Small lesions on the bowel can eventually progress and become full-thickness lesions that cause obstruction and may require major bowel surgery.

The Importance of Specialist Care

Because bowel endometriosis deals with your gastrointestinal system, it’s usually not solely treated by a general gynecologist. A collaborative care approach between an endometriosis expert, gastroenterologist, and/or general surgeon may be necessary to treat your bowel endometriosis from all angles.

Read More: Finding an Excision Specialist: What you Need to Know

Conclusion

Understanding the link between endometriosis and bowel problems is vital for improving diagnosis and treatment outcomes. If you’re experiencing symptoms of bowel endometriosis, it’s important to discuss them with your doctor and consider seeing a specialist. In doing so, you’ll be taking an important step towards managing your symptoms and improving your quality of life.

References:

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

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

https://www.everydayhealth.com/endometriosis/bowel-endometriosis/

Endometriosis and constipation

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

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10 months ago Bowel Endometriosis , Endometriosis , Endometriosis Education No comment

Endometriosis Supportive Therapy: Can Endometriosis Be Treated Without Surgery?

Endometriosis is an extremely painful chronic condition, which often also leads to infertility or subfertility, that affects about ten 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 masking of symptoms, are hormonal options and excisional surgery.  However, there are major limitations to the argument that hormonal therapies work very well to treat endo rather than simply reduce symptoms.  That leaves surgery.

So, 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, including anti-inflammatory and perhaps anti-histamine agents (e.g. Zyrtec), both mainstream and integrative-holistic, don’t help. They might.  Let’s unpack this a little bit to give you a roadmap of the options.  

Table of contents

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 anti-inflammatory 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 mainly 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 for endometriosis. Because of this, recommendations can vary between practitioners.  We won’t delve into all these options here, but the following are excellent summary articles on this important topic. 

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 estrogen levels or eliminating estrogen altogether or increasing progestational agent levels to try to medically eliminate endo lesions. Reducing estrogen levels is not possible since there are different types of estrogen, different sources of estrogen and endo lesions themselves can influence local production of estrogen. 
  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 pain relief is possible but hormonal therapy fails to significantly retard the growth of endometriosis tissue when objectively tested in pathology laboratories.  Further, hormonal therapy cannot eliminate scar tissue 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 endometriosis 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 and scar tissue (fibrosis) rather than burning them away (fulguration) is a better and safer approach.  To discover more about surgical considerations, consider the following articles. 

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. 

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 like non-steroidal anti-inflammatory (NSAID), 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.  

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

Updated Post: July 09, 2024

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11 months ago Endometriosis , Endometriosis Education , Endometriosis Fertility No comment

Endometriosis-Related Infertility – Minimal Causes

Endometriosis, a common gynecological condition, has been frequently associated with infertility. However, the question remains: can minimal endometriosis cause infertility? This comprehensive article aims to delve into the connection between endometriosis, particularly in its minimal stage, and fertility issues.

Table of contents

Defining Endometriosis

Endometriosis is a medical condition characterized by the growth of endometrium-like tissues outside the uterus. These tissues can adhere to various pelvic structures like the ovaries, fallopian tubes, and even the intestines and bladder, causing irritation, inflammation, and scar tissue formation.

Stages of Endometriosis

Endometriosis is categorized into four stages:

  • Stage I (Minimal): Small endometriotic implants with no scar tissue.
  • Stage II (Mild): More extensive implants, involving less than 2 inches of the abdomen, without scar tissue.
  • Stage III (Moderate): Severe endometriosis with deep implants and possible formation of endometriotic cysts or ‘chocolate cysts’ in the ovaries.
  • Stage IV (Severe): Numerous endometriotic implants, possibly large endometriotic cysts in the ovaries, and scar tissue formation around the reproductive organs.

Read More: Understanding How Endometriosis Can Cause

The Connection Between Endometriosis and Infertility

It’s estimated that 30% to 50% of women with endometriosis may experience infertility. Even in cases of minimal or mild endometriosis, the disease may still impact fertility in numerous ways, including:

  • Distorted pelvic anatomy due to scar tissue and adhesions
  • Inflammatory response causing a hostile environment for eggs, sperm, and embryos
  • Altered immune system functionality
  • Changes in the hormonal environment affecting egg quality and embryo implantation

However, it’s essential to note that endometriosis does not necessarily equate to infertility. Many women with endometriosis, even in severe stages, can conceive naturally or with fertility treatments.

Exploring the Question: Can Minimal Endometriosis Cause Infertility?

The impact of minimal endometriosis on fertility is a contentious subject. The disease, even at its earliest stage, can cause inflammation and subtle changes in the pelvic environment, potentially affecting fertility. However, many women with minimal endometriosis conceive without issues, leading some researchers to suspect that other factors, possibly genetic or immunological, might be at play in cases of endometriosis-associated infertility.

Diagnosing Endometriosis

Diagnosing endometriosis can be challenging, as many women with infertility migh experience no symptoms. The gold standard for diagnosis is a surgical procedure known as laparoscopy, allowing the doctor to visually inspect the pelvic organs for endometriotic lesions and scar tissue, and take samples for histopathology.

Read More: Life After Endometriosis Surgery: A Comprehensive Guide

Evaluating Fertility

Before initiating any fertility treatment, a comprehensive fertility evaluation is recommended. This includes hormonal and blood tests, an assessment of ovarian reserve, a sperm analysis for the male partner, and possibly a laparoscopy to confirm the presence and extent of endometriosis.

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

The treatment approach for endometriosis-related infertility is multifaceted, depending on the stage of endometriosis, the woman’s age, and the presence of other fertility factors.

Surgical Treatment

For women with Stage I or II endometriosis, surgical removal of endometriotic tissue may improve pregnancy rates. However, for women aged 35 or older, other fertility treatments might be recommended in addition to surgery.

Medical Treatment

Medical treatments aim to suppress endometriosis growth by reducing estrogen levels. However, these treatments, including hormonal contraceptives and Gonadotropin-Releasing Hormone (GnRH) agonists, prevent pregnancy during use.

Assisted Reproductive Technology (ART)

In cases where pregnancy does not occur naturally or following surgery, ART methods such as Intrauterine Insemination (IUI) or In Vitro Fertilization (IVF) may be recommended. The success rates of these treatments vary depending on the woman’s age, ovarian reserve, and specific fertility issues.

Conclusion: Can Minimal Endometriosis Cause Infertility?

While minimal endometriosis can potentially affect fertility, it does not guarantee infertility. A comprehensive evaluation and personalized treatment plan can help women with endometriosis, even at minimal stages, to conceive successfully. However, further research is needed to fully understand the complex relationship between endometriosis and fertility.

References:

https://www.brighamandwomens.org/obgyn/infertility-reproductive-surgery/endometriosis/endometriosis-and-fertility

https://www.uptodate.com/contents/endometriosis-treatment-of-infertility-in-females

https://www.tommys.org/pregnancy-information/planning-a-pregnancy/fertility-and-causes-of-infertility/how-does-endometriosis-affect-fertility

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

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11 months ago Endometriosis , Endometriosis Education No comment

Understanding the Pain and Symptoms of Bowel Endometriosis

Endometriosis is a condition affecting roughly 11% of women worldwide, predominantly those of reproductive age. An even more specific form of this ailment is bowel endometriosis, which impacts around 5% to 12% of those diagnosed with endometriosis. In this comprehensive guide, we delve into the intricacies of bowel endometriosis, exploring what it feels like, the symptoms, causes, diagnosis, and treatment options.

Table of contents

What is Bowel Endometriosis?

Bowel endometriosis occurs when endometrial-like tissue, which typically grows inside the uterus, begins to develop on or inside the bowel walls. This can lead to a range of gastrointestinal symptoms, often causing significant discomfort and negatively impacting the quality of life.

Read More: Understanding Bowel Endometriosis

Where Does Bowel Endometriosis Occur?

The condition predominantly affects the rectum and sigmoid colon, with approximately 90% of bowel endometriosis cases directly involving these regions. However, the appendix, small intestine, stomach, and other parts of the large intestine can also be affected.  In many cases, bowel symptoms occur because of the mere presence of intensely inflammatory endo lesions on the peritoneum in the pelvis and abdomen and not even involving the bowel directly with implants. 

Symptoms of Bowel Endometriosis

The symptoms of bowel endometriosis often mimic common gastrointestinal disorders, including small intestinal bacterial overgrowth (SIBO), making it difficult to diagnose. They can range from mild to severe, and often fluctuate depending on the menstrual cycle. 

Common Symptoms

Common symptoms may include:

  • Abdominal pain, particularly in the lower quadrants
  • Bloating, often referred to as “endo belly”
  • Changes in bowel movements, including constipation or diarrhea
  • Nausea and vomiting
  • Pain during bowel movements, which might increase during menstruation
  • Rectal bleeding

Non-Bowel Symptoms

In addition to bowel symptoms, individuals with endometriosis might experience:

  • Chronic pelvic pain
  • Difficulties with fertility
  • Painful sexual intercourse
  • Pain during urination
  • Pelvic heaviness
  • Fatigue
  • Impaired psychological well-being

Causes of Bowel Endometriosis

The exact cause of bowel endometriosis remains unknown. However, Mullerianosis of embryogenic origin and retrograde menstruation are two often-quoted theories. Mullerianosis of embryogenic origin suggests that developmental abnormalities lead to cells being present in atypical locations which later turn into endometriosis.  This includes potential genetic, genomic and immunologic influencing factors.  Retrograde menstruation proposes that period blood flows upward towards the Fallopian tubes and into the pelvis instead of out through the vagina, potentially leading to endometriosis. Given that most women experience retrograde menstruation, and only 10% or so experience endometriosis, this theory is antiquated and has been challenged because of this disconnect.  Far more likely, some combination of embryologic, molecular, immunologic and genetic factors are in play and this can vary between individuals.  

Read More: Can Endometriosis Cause Bowel Issues?

Diagnosis of Bowel Endometriosis

Diagnosing bowel endometriosis is a complex process. It often requires a combination of a good evaluation of symptoms history, physical examination, imaging techniques like ultrasound or MRI, and sometimes minimally invasive laparoscopic or robotic surgery. However, diagnosis could be delayed due to its symptom similarity with other gastrointestinal diseases.  Imaging can only help with diagnosis and potential mapping for surgery.  It is absolutely not reliable enough to exclude the diagnosis of endo. 

Misdiagnosis

Misdiagnosis is common in bowel endometriosis, with many patients being misdiagnosed with irritable bowel syndrome (IBS) or other gastrointestinal disorders. Therefore, a high index of suspicion is necessary for diagnosis, and any bowel symptoms correlated with the menstrual cycle should be critically evaluated.

The Role of Minimally Invasive Surgery

Surgery with biopsy is considered the “gold standard” in diagnosing endometriosis, including bowel endometriosis. It provides a more accurate diagnosis and gives healthcare providers an exact idea of how much scar tissue and endometrial-like tissue they’re dealing with. Ideally, the surgeon should be prepared to perform a therapeutic surgery at the same time as a diagnosis.  However, a bad surgery is worse than no surgery if the surgeon is unprepared and performs some variation of fulguration (burning) of endometriosis lesions as opposed to proper excision of the lesions or implants.  If diagnostic surgery uncovers a situation where the surgeon is unprepared to properly perform therapeutic excision it is better to back out and refer to an appropriate surgeon. 

Treatment of Bowel Endometriosis

Treatment for bowel endometriosis often involves surgery, as medical management has generally been deemed ineffective for these specific lesions. The chosen surgical method depends on the extent of the condition. In many cases, hormonal options may also be recommended after surgery to reduce recurrence risk.  The better the surgery the less likely this would be required but there are exceptions.   

Surgical Treatment

The surgical treatment of endo usually involves removing all of the peritoneal lesions by an excisional technique. In deeply infiltrating endometriosis, the approach may vary based on the involvement of the rectal wall or the mesentery, which is where the blood vessels to the rectum are located. The treatments for bowel endometriosis include shaving, nodulectomy, disc resection, and bowel resection.  The surgeon should be capable of performing any of these procedures as needed at the time.  In some cases this may be the main excision surgeon, if they have bowel surgery training and hospital prvileges, and in other cases, this may be another surgeon who is part of the backup team.   In the latter situation, it is best if the possibility of bowel surgery and options are addressed before surgery and not as an emergency during surgery, when appropriate surgeons may not be readily available.  

Lifestyle Changes

Alongside medical treatment, lifestyle changes can aid in managing bowel endometriosis symptoms. Some patients find that certain foods or lifestyle habits, such as stress or irregular sleep, may trigger their symptoms. Keeping a journal to track triggers and consulting with a healthcare provider or nutritionist when making dietary changes can be beneficial.

Read More: How to Treat Bowel Endometriosis: A Comprehensive Guide

Coping with Bowel Endometriosis

Living with bowel endometriosis can be challenging, but with the right diagnosis, treatment, and management, individuals can lead fulfilling lives. It’s essential to communicate openly with healthcare providers about symptoms and concerns, as this can aid in diagnosis and treatment planning.

In conclusion, bowel endometriosis is a painful and often misunderstood condition. Increased awareness and understanding of the disease can help in early diagnosis, effective treatment, and improved quality of life for those affected. If you suspect you might have bowel endometriosis or are experiencing any of the symptoms mentioned, do not hesitate to seek medical advice.

References:

Surgical Outcomes after Colorectal Surgery for Endometriosis: A Systematic Review and Meta-analysis

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12 months ago Endometriosis , Endometriosis Education No comment

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.

Table of contents

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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1 year ago Endometriosis , Endometriosis Education No comment

“You Don’t Have Endometriosis” My Story

Many people have been asking about the return of our podcast iCarebetter: Endometriosis Unplugged. We are on a hiatus but thought it may be nice to share some success stories as those were quite popular. As we get the podcast up and running again and more interviews underway, I thought it might be helpful to share my own story, and why I am such an excision surgery advocate, though I understand it does not address everything. When you are told “you don’t have endo” you have two choices – give up and look elsewhere or keep pushing. 

Many of us keep pushing and get pushback about having central sensitization, needing mental health help, or it’s just not the right diet and supplements. Yes, all of those things may be true AND it also may be true that you didn’t have the correct surgery or surgeon. 

Table of contents

Endometriosis Symptoms 

I was twenty-eight years old when I suddenly started feeling a sharp pain in my lower abdomen, one that was all too familiar in my teen years. I was told by the emergency room doctor shortly after starting my period that the pain I was having was likely due to rupturing cysts, and told my mom I needed to see a gynecologist to talk about birth control options to prevent them from happening. I was thirteen years old at the time, in the emergency room after my mom and brother had to pull me out of the shower because I experienced sudden and severe abdominal pain causing me to not be able to stand up or walk. 

This was 15 years later but all too familiar. I saw my doctor who recommended an ultrasound and was told once again “it was probably a ruptured cyst,” and that I may want to consider birth control pills in addition to my Mirena IUD as it “could be defective,” despite no periods or pregnancy scares over the last two and a half years since I had it replaced. At the same time, I became severely constipated and bloated with anything I ate, as well as feelings of sharp rectal pains and an odd sensation throughout my body, like a tingling or wave of lightheadedness during times I did have an urge to have a bowel movement. This also was very familiar to me but I hadn’t had it in years, it was less like a pain but a very intense uneasiness that made me stop in my tracks and literally pray to God for it to end, which it did, usually within a minute or two. 

After the ultrasound, the addition of Lo Loestrin along with the Mirena IUD, next step was a colonoscopy with no answers except for some relief after three months of barely any movement, and a diagnosis of IBS (irritable bowel syndrome). At this point, I had seen my OBGYN, a GI specialist, a naturopath, and discussed with my PT colleagues, but still no answers. 

I should mention, this all started after the most severe stress I had ever experienced at this point – a divorce. So it was no surprise that throughout all of these visits, it was definitely suggested that this could all be due to stress and anxiety. I knew there was more though, and I was seeking out the help I needed to learn to handle the stressors.  

Trials and Tribulations 

After about two years of trying various diets, food allergy & sensitivity testing, changes in birth control pills, a new GI doctor finally asked if I’d ever been tested for SIBO (small intestinal bacterial overgrowth).  “SIBO? What’s that?” I responded. Sure enough SIBO was in fact part of the problem (both hydrogen and methane positive) and after two rounds of antibiotics, things started to feel somewhat normal, until the UTI-like symptoms began. However, it was not a UTI, I learned that I was experiencing side effects from the birth control pill I had started to control the pain from the cyst ruptures, also known as hormonally mediated vestibulodynia, which we recently wrote about in a previous blog which you can read here. 

At this point, constipation was still a struggle, but nothing like it was before, the antibiotics helped, the diets helped, everything helped a bit, until it didn’t. The rectal symptoms were recurring, the constipation still a daily struggle and if I had a “bad” diet day, it took almost a week to get back on track. SIBO was recurring, the diets were stressful, the symptoms would fluctuate without a rhyme or reason and then the severe abdominal pain came once again along with a fever and nausea. It was time to go back to the ER. 

The ER Visit

This felt all too familiar, I waited several hours and even overheard the team in triage say “bladder symptoms, probably UTI.” I was finally rolled in and waiting for a CT scan to check for appendicitis. The pain was severe and the only thing that made a dent, and in my fever, was the lovely little morphine button. As soon as it got close to the time to press the button again, fever would spike and pain would come back. 

Good news and bad news. Good news no appendicitis, bad news is in the scan they saw a cyst on my liver and I need more imaging. More imaging was done and they couldn’t say what the cyst was, but this time they saw that I had some swelling in my lung and there was something called ‘atelectasis’ or a partial deflation of my lung. They finally sent me for a pelvic ultrasound and guess what the conclusion was “you probably ruptured a cyst, we see fluid behind your uterus. Have you seen your gynecologist?” 

At this point the fever wasn’t breaking, I had no answers but 10 more problems on the list and they admitted me to hospital where I stayed for four days. 

The Hospital Stay

I was checked by probably every type of specialist within those four days. Hospitalist, GI doc, urologist, immunologist, obgyn, and even infections disease. I had breakouts in hives and rashes because I am very sensitive to most antibiotics, I was in and out of imaging machines, my oxygen levels wouldn’t stay up – likely because of the partial lung collapse, and I had to practice breathing into that plastic thingy (an inspirometer), and on top of it, they diagnosed me with a heart murmur and was told I needed to follow up with a cardiologist for a further workup. 

In the end, they released me because the fever finally broke and my pain subsided and told me “we have no idea, it was probably some virus, follow up with your OBGYN.” 

The OBGYN (Urogynecologist)

It was after a patient of mine, who had endometriosis, asked me “Do you think you could have endo?” I really never thought about it, my younger sister had endo or was clinically diagnosed with it many many years prior, but I didn’t feel like she did, she had severe period pain, would miss work and school, heavy bleeding, all the endo symptoms and I had GI issues and intermittent severe abdominal pain from rupturing cysts. 

At my appointment, I brought up this question – “how do they KNOW I ruptured a cyst, if it ruptured? She told me that because of the fluid and the symptoms, it was likely that, and that we should see the fluid go away shortly as the body reabsorbs it. I still had my IUD so I wasn’t sure when I was ovulating and she agreed to do weekly transvaginal ultrasounds to monitor. The fluid never went away. 

I had a lovely doctor, and she really helped me get on the right path, though she was not an endometriosis specialist, she was able to take me to surgery. I knew what she could and couldn’t do, and she was very transparent with me about this. By this time, I had done more research and knew there was a very high likelihood I would have to have another surgery – an excision surgery. I was okay with that because I knew what I was going into and knew what the outcomes could be, and it was essentially free, because of that lovely ER visit hitting all of my deductibles and out of pocket maximums. 

Surgery #1 (November 2017)

To keep it short, I was told I didn’t have endo. Despite this, she said that my left uterosacral ligament was ‘very strange’ and she took a biopsy and a sample of the pelvic fluid that never went away. When I got my pathology report back it read:

  • Left Uterosacral Ligament: Fibrotic inflammatory tissue
  • Pelvic Free Fluid: Cells consistent with endometriosis

I was still not given an endometriosis diagnosis after this, and I felt horrible. This was November 2017 and all the tools I had been able to use to manage to some degree, didn’t work. I was so fatigued, my GI symptoms were awful, SIBO came back yet again, and just felt unwell. Everything was difficult but at least I was on the right track. 

Surgery #2 (March 2018)

After having my surgical pictures reviewed by trusted colleagues, and the most painful, but helpful pelvic exam that literally reproduced my symptoms. My doctor told me “this is endometriosis, I can feel nodules.” She assured me that it presents in different ways, and really taught me the difference between the training of endometriosis specialists vs the standard gynecologist. She educated me about the different types of lesions and that not all of them come back as endometriosis because they lack “stroma and glands” but that fibrotic endo is likely what I had, and it can cause problems. This made a lot of sense and in March 2018, I had my second surgery, but this time it was the right one. My pathology report looked quite a bit different this round, and I felt entirely different. 

  • Uterus: globular and soft (possibly adenomyosis)
  • Rectovaginal septum: Peritonealized fibrofatty with focal reactive mesothelial hyperplasia
  • Right Uterosacral Ligament: Peritonealized fibromuscular and fatty tissue
  • Left Uterosacral Ligament: Fibromuscular and fatty tissue with few CD10 positive cells compatible with endometriosis
  • L peritoneum (pelvic sidewall): Fibrofatty tissue with endometriosis with single non-necrotizing granuloma

It was definitely validating seeing this report but it was even better when it just was gone, the inflammation, the pain, much of what I was experiencing was just gone. I now understood what many of my patients had told me. While this is not everyone’s experience, in my personal and professional experience, when you’ve addressed all the various factors, oftentimes the lesions are the last one and there is a vast difference in those who have a true excision surgery versus an incomplete excision surgery or non-excision surgery. Dr. Vasilev just wrote about how to find a specialist and some considerations. 

If you suspect endo is your problem, and you’ve had a surgery though you suspect it may not have been a thorough one, I sincerely urge you to seek a second opinion. I see this all too often, and it saddens me. I understand, because I have been there. The instances I see this the most are the ones who have fibrotic endo and are either told “you don’t have endo” or it’s never even addressed during their surgery because it is not recognized as endo by many doctors.  

The years following…

I did well for about three years, and after a very significant reaction I had, and months of inflammation following, I felt those endo symptoms creep back. The constipation that just felt like something was blocking my intestines from moving and the rectal symptoms, which is called dyschezia, and is one of the clinical manifestations of endometriosis. I had some symptoms that concerned me about thoracic endo, and the other new symptom was that I was getting fevers and flu-like symptoms about 1-2 days before my period that would dissipate on day 3 of my cycle. Because of COVID, and working in healthcare, I was testing frequently, but it was never covid and it would never be more than 48-36 hours. 

I found a wonderful in-network doctor in San Diego, and in February 2022, I had my third surgery (second excision) and there was regrowth of only fibrotic tissue in the rectovaginal septum as well as adhesions attaching my sigmoid colon to the left pelvic side wall. Once again, my symptoms completely resolved following the surgery. 

My story is not a unique one, but I felt it was important to share as I have had this same discussion with others in urging them for a second opinion and sure enough, they DID have endo, they just weren’t listened to, or hadn’t found the right doctor. I get discouraged when I hear people dismiss excision surgery because of the lack of good studies supporting it. The surgery is not the issue, the research is the issue. However, surgery won’t fix or cure all of the issues one may have and while the surgery (I feel) is crucial to most, if not all, people; you still need to be a detective and address ALL of the issues and root problems for the best outcome. 

Check out our podcast iCarebetter: Endometriosis Unplugged, available on Spotify and Apple Podcasts for more personal stories and discussions with experts, and we will see you for more episodes in 2024! 

Related reading:

  1. Endometriosis and Painful Intercourse: Is it Really Just Endometriosis?
  2. Finding an Excision Specialist: What you Need to Know
  3. All You Need to Know About Endometriosis Lesions

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1 year ago Endometriosis , Endometriosis Education No comment

Pelvic Floor Physical Therapy: What you Need to Know 

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In recent years, pelvic floor physical therapy (PFPT)  has increased in popularity, much like endometriosis. More people have at least heard the term, and it has caught the attention of mainstream media recently in FX’s American Horror Story: Delicate. Though I will say the depiction of what we do was a bit horrific if you’ve watched the show, PFPT is a crucial part of one’s endometriosis journey. While there has been a large (and much needed) increase  in practitioners and social media reels, there are some things you need to know to find the right physical therapist for you. 

In earlier blogs, we’ve posted about the benefits of PFPT before excision surgery as well as the benefits after excision surgery which you can find in the links listed below.

Endometriosis and the Pelvic Floor

Endometriosis is most recognized for its 5 clinical manifestations: infertility, dysmenorrhea (painful periods), dyspareunia (painful intercourse), dyschezia (painful bowel movements), and dysuria (painful urination). It is important to note that many of these manifestations may have alternative causes aside from endometriosis, many of which can stem from pelvic floor dysfunction. When it comes to endometriosis, one of the most frustrating parts is getting a diagnosis, especially because it truly requires surgical intervention for definitive confirmation. Something that we emphasize is that when it comes to endometriosis, it is important to address all of the pain generators in addition to the lesions themselves in order to have the best outcome. 

Endometriosis has a 7-10 year delay in diagnosis, providing ample opportunity for additional symptoms to develop either because of progression of the disease, ongoing chronic pain causing physical limitations, or even due to side effects of “treatments” for endometriosis such as hormonal suppression therapies like birth control and GnRH agonists/antagonists. 

One of the key aspects of endometriosis that is often underestimated is its association with pelvic floor muscle dysfunction. The pelvic floor muscles (PFMs) play a crucial role in supporting the pelvic organs, providing core stability, controlling bowel and bladder functions, and contributing to sexual arousal and orgasm.

Women with endometriosis often experience PFM dysfunction due to the chronic pain and inflammation caused by the disease. This can lead to a variety of problems, including hypertonia (excessive muscle tone), trigger points (painful knots in the muscles), and myofascial pain (pain in the muscle and its surrounding fascia). 

The Role of Pelvic Floor Physical Therapy

PFPT is a specialized form of physical therapy focusing on the pelvic floor’s muscles, ligaments, and connective tissues, addressing issues from the knees to the rib cage and beyond. Contrary to common misconceptions, PFPT goes beyond postpartum care, challenging the notion of a one-size-fits-all solution like Kegel exercises.  Those with endometriosis typically fall into the category of “hypertonic” or “high-tone” pelvic floor dysfunction versus weakness or “low-tone” pelvic floor dysfunction, and this needs a vastly different approach than kegels. 

Understanding that not all PFPTs are equal, training variations exist, with many PTs needing additional education beyond basic training. PFPTs treating pelvic pain often require a multidisciplinary approach, encompassing interventional pain management and sexual medicine, which is often not taught in the additional courses PFPTs are required to take beyond their basic education in PT school.

The bottom line here is that if your PT only has training in treating “low-tone” pelvic floor dysfunction and is recommending kegels, you may need to see what other options are available. There is also no standardization in what is considered to be adequate pelvic floor PT, though there are some key aspects those specialized in pelvic pain will utilize. 

  • Manual Therapy including myofascial release and visceral mobilization, involves the use of hands-on techniques to manipulate the body’s tissues. This can help alleviate hypertonia and trigger points in the PFMs, improve circulation, and give different inputs to the nervous system resulting in reduced symptoms.
  • Exercises which typically do not involve kegels, at least initially, will focus on exercises that reduce tension in the pelvic floor muscles and will progress to include exercises that optimize your biomechanics and when appropriate, facilitate return to your previous level of function which may include weight lifting, running, yoga, etc.
  • Modalities such as TENS unit or e-stim, ultrasound, or biofeedback. Biofeedback may be very helpful for those who are visual learners or may be the only option in your area, but ultimately, these should be adjunct therapies to complement the other techniques vs. the focus of your sessions.
  • Education is probably one of the most important pieces of what we do. As the provider that likely spends the most time with patients, we can help answer questions, provide support, and essentially act as your liaison between providers to help streamline care.
  • Differential Diagnosis. While PTs cannot make medical diagnoses, we can help in better identifying pain generators and communicating this to your team. For example, if your main complaint is painful sex (dyspareunia), we can help differentiate whether this is due to tight and painful pelvic floor muscles, vestibulodynia (a type of vulvodynia specific to the tissue surrounding the urethra and vagina) which is associated with superficial dyspareunia (or entrance pain) vs. deep dyspareunia which is more associated with endometriosis, or specific palpation techniques that point more towards endometriosis lesions. 

Additional Considerations

Finding a PT that fits your needs may be difficult as this is a specialty that needs more practitioners. However, if you are suffering from pain and are not getting the results you expect, the frequency and length of appointments may be a factor. Typically patients with pelvic pain benefit most with at least weekly, sometimes twice per week, appointments for at least 6-8 weeks to begin to see changes. Ideally each appointment is 40-60 min and involves a combination of techniques, especially manual therapy. Because PFPTs are hard to find, sometimes busy schedules do not allow for this treatment frequency, so don’t write off PT altogether if your outcome was less than optimal. Additionally, there is a wide range of techniques we utilize which vary depending on individual training. Most important, not everyone is a good fit for each person and it is really important to find a provider you feel comfortable with.

The Impact of Pelvic Floor Physical Therapy on Endometriosis

Through a combination of these techniques, pelvic floor physical therapy can have a significant impact on the management of endometriosis. Studies have shown that this form of therapy can help reduce pelvic pain, improve PFM function, and enhance overall quality of life for women with endometriosis.

Moreover, pelvic floor physical therapy can also help address some of the underlying issues associated with endometriosis, such as muscular dysfunction and chronic inflammation. By improving the function of the PFMs and reducing inflammation, this form of therapy can help alleviate some of the pain generators present in those with endometriosis, leading to more effective and long-lasting relief and better outcomes along with surgery. 

While PFPT is instrumental, it should be part of a broader treatment plan that includes medical treatments, complementary therapies, and lifestyle changes. Integrating PFPT ensures that endometriosis patients receive comprehensive and effective care for the best outcomes. 

By integrating pelvic floor physical therapy into the broader treatment plan, healthcare providers can help ensure that endometriosis patients receive the most comprehensive and effective care possible.

Check out our iCareBetter vetted physical therapists here.

Additional reading:  Managing Endometriosis: What You Need to Know. 

References:

  1. Wojcik, M., Szczepaniak, R., & Placek, K. (2022). Physiotherapy Management in Endometriosis. Int J Environ Res Public Health, 19(23). https://doi.org/10.3390/ijerph192316148 
  2. Fraga, M. V., Oliveira Brito, L. G., Yela, D. A., de Mira, T. A., & Benetti-Pinto, C. L. (2021). Pelvic floor muscle dysfunctions in women with deep infiltrative endometriosis: An underestimated association. Int J Clin Pract, 75(8), e14350. https://doi.org/10.1111/ijcp.14350 

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1 year ago Endometriosis , Endometriosis Education , Endometriosis Physical Therapy , Integrated Care No comment

TENS Therapy: A Non-invasive Pain Relief Option for Dysmenorrhea

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Dysmenorrhea and endometriosis are two common health issues that many women face. These conditions often cause severe pelvic pain, disrupting everyday life. Pain relief for these conditions traditionally involves medication whether it be oral contraceptive pills or other hormonal suppressive medications or non-steroidal anti-inflammatory medications, which can sometimes lead to unwanted side effects. In many cases, those with endometriosis need additional support as these are not always effective. While excision surgery should be discussed, even those who have had successful surgeries continue to have persistent pain. Conditions such as dysmenorrhea, adenomyosis, and endometriosis can all contribute to persistent pain. Our blog titled Endometriosis and Adenomyosis: Decoding Their Contribution To Pelvic Pain helps explain these connections.

Modalities do exist that can be helpful for some, with a low side-effect profile. One particular modality of interest has been various Transcutaneous Electrical Nerve Stimulation (TENS) devices, and there have been improvements in these devices especially for those with dysmenorrhea also known as painful periods. One device that we are fond of is the Apollo from My Obi.

What is TENS Therapy?

TENS therapy is a pain management technique that uses low-voltage electrical currents to alleviate pain. It’s a non-invasive treatment that doesn’t involve medication, making it an attractive option for those who experience side effects from traditional pain relief methods.

How Does TENS Therapy Work?

TENS therapy functions by sending electrical currents through the skin to stimulate the nerves. These currents trigger the production of endorphins, the body’s natural painkillers, and block the pain signals from reaching the brain. The intensity and duration of the current can be adjusted to suit individual needs and pain tolerance.

Operation of TENS Devices

TENS devices, such as the Apollo belt and the OVA device, are designed to be user-friendly. They are lightweight and can be clipped onto clothing, allowing users to continue with their daily activities while receiving treatment. The devices come with preset programmes, which the user can select and adjust according to their comfort level.

Benefits of TENS Therapy

TENS therapy offers numerous benefits, especially for women suffering from dysmenorrhea and endometriosis. They are often readily available and affordable, some devices offer a heating option as well! 

Non-pharmacological Treatment Option

One of the main advantages of TENS therapy is that it’s a non-pharmacological treatment. It doesn’t involve medication, reducing the risk of side effects or interactions with other drugs.

Increased Blood Flow

TENS therapy can also increase blood flow to the abdomen. This improved circulation helps to reduce inflammation and swelling, further relieving pelvic pain.

User-Controlled

TENS therapy is controlled by the user. This means the intensity and duration of treatment can be adjusted to suit individual needs and pain levels.

Effectiveness of TENS Therapy for Period Pain and Endometriosis

Several studies support the use of TENS therapy for period pain and endometriosis. A review of these studies found TENS therapy to be effective in reducing pain in women with primary and secondary dysmenorrhea. In terms of endometriosis, TENS therapy may offer a viable treatment option, although more research is needed in this area.

Side Effects and Contraindications

TENS therapy is generally safe with few side effects. However, it may not be suitable for everyone. For instance, people with heart conditions or those with a pacemaker should avoid TENS therapy. It’s always best to consult with a healthcare professional before starting any new treatment.

Summary

TENS therapy provides a non-invasive, user-controlled, and effective pain relief solution for dysmenorrhea and endometriosis. It increases blood flow and stimulates the production of endorphins. Moreover, it’s a non-pharmacological treatment, making it an attractive option for those who experience side effects from traditional pain relief methods. However, it’s always best to consult with a healthcare professional before starting any new treatment.

The potential of TENS therapy is promising, and further research could unlock more benefits for women suffering from pelvic pain. By exploring alternative treatments like TENS therapy, we can continue to improve the quality of life for those affected by conditions like dysmenorrhea and endometriosis. If you suffer from pelvic pain or dysmenorrhea you may want to seek help from a specialist, not sure? Read about the signs and symptoms that warrant help here!

References:

Schiotz, H. A., Jettestad, M., & Al-Heeti, D. (2007). Treatment of dysmenorrhoea with a new TENS device (OVA). J Obstet Gynaecol, 27(7), 726-728. 

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3 years ago Endometriosis , Endometriosis Education , Endometriosis Specialist No comment

Find Endometriosis Specialists for the Best Possible Outcomes

Table of contents

Why You Need an OB-GYN Who Specializes in Endometriosis

Endometriosis is common (affecting nearly 190 million women worldwide) but poorly understood by many medical professionals. It’s hard to find endometriosis specialists who have completed advanced training. With the proper endo specialist, medical treatment or surgery can lessen your pain, improve your quality of life, and manage complications.

Endometriosis is a chronic pain condition that affects 10-15% of women of reproductive age. It causes painful periods, bleeding between periods, pain during sexual intercourse, and discomfort when passing urine or feces. Despite causing chronic pelvic pain, many medical professionals have a poor understanding of the condition.

In this article, we will look into what endometriosis is and explore how to improve diagnosis, treatment, and outcome factors.

What is Endometriosis?

Endometriosis affects menstruating women and girls and some women post-hysterectomy or post-menopause. The condition also can affect transgender men and non-binary individuals. Endometriosis affects roughly 190 million people worldwide, with immune, genetic and hormonal factors all likely to be at play. 

To understand Endometriosis, we first need to understand the endometrium or lining of the uterus.

The Endometrium

A large proportion of the endometrium is stromal cells. Stromal cells regulate cell growth and change during the menstrual cycle.

Endometrial glands line the endometrium. During the menstrual cycle, they widen in response to greater blood flow.

Each cycle, stromal cells, and endometrial glands slough off as part of menstruation.

Endometriosis Lesions

The presence of endometrium-like cells found outside the uterus causes the classic endometriosis symptoms. Discourse exists, but scientists have concluded a genetic basis to the cells’ presence, with endometrium-like cells migrating inappropriately during embryogenesis.

Endometriotic lesions can be in the ovaries, uterine ligaments, fallopian tubes, and pouch of Douglas (the space between the uterus and rectum). In some, lesions are present outside the pelvic cavity. Locations include the bowel, urinary tract wall, diaphragm, lungs, abdomen, and pericardium (the sack around the heart).

The endometrial-like tissue responds to the natural cycle of hormones and also produces some hormones by itself. This tissue has cycles of growth and bleeding. 

Whereas menstrual blood in the uterus leaves the body via the vagina, the blood and tissues cannot escape from endometriosis lesions. This trapped cells and tissue leads to the painful processes of inflammation, adhesions, and scarring.

What does it feel like to have Endometriosis?

Although pain is the most common complaint, Endometriosis causes a wide range of symptoms, including:

  • Painful periods
  • Heavy periods (menorrhagia)
  • Vaginal bleeding between periods
  • Pain on passing urine or feces
  • Bowel symptoms include bloating, constipation, diarrhea, or bleeding from the bowel
  • Pain during intercourse
  • Tiredness
  • Depression
  • Infertility.

Social and Emotional Effects

Severe pain can interrupt daily life for many patients. This interruption may include missing school, taking days off work, or being unable to socialize. A study in 2020 found that in over half of women, the pain had reduced their professional, physical, and sexual activity. 

Endometriosis is associated with low mood. 15% of women are diagnosed with depression, with an average age at diagnosis of 22. 

Infertility

Infertility can be the only symptom of Endometriosis for some women. Around 30-50% of patients cannot get pregnant owing to inflammation, pelvic adhesions, blockage of the fallopian tubes, and changes to the pelvic anatomy.

Other Symptoms

Additional symptoms are dependent on the location of endometriosis lesions. For example, an endometriotic lesion in the lung could cause breathlessness or chest pain. A study of over 2000 patients found that endometriotic nodules caused leg and buttock pain, as well as numbness, similar to sciatic pain. 

Misdiagnosis and incorrect management are therefore common for women with symptoms that are not classic to pelvic endometriotic lesions. 

Endometriosis Myths

The average delay in the diagnosis of Endometriosis is more than seven years, leading to “unnecessary suffering and reduced quality of life.” This delay leads many people to the internet to conduct their own research before and during diagnosis. However, the internet is awash with myths.  

The importance of educating yourself via a reputable source such as iCareBetter cannot be understated.  

Find Endometriosis Specialists for Appropriate Diagnosis & Treatment 

The widespread misunderstanding of Endometriosis hinders its diagnosis and treatment. The inappropriate investigation, treatment with analgesics, or hormonal suppression do little to manage the cause while delaying diagnosis. Women who felt they were not listened to nor understood by doctors have described frustration, anger, annoyance, and sadness.

Reassuringly, appropriate diagnosis and treatment can lead to significant improvements in pain. This is precisely why it is crucial to find an endometriosis specialist. Only highly specialized surgeons with a comprehensive team can perform a thorough excision to remove endometriotic lesions, including extra-pelvic locations. Complete removal can significantly improve overall outcomes, including relief from pain and increased quality of life.

iCareBetter Endometriosis Care

iCareBetter is a platform that connects patients with experts in endometriosis care. At iCareBetter, patients have access to surgeons who have completed advanced training. These professionals have shown expertise in the diagnosis and treatment of complex Endometriosis. iCareBetter utilizes a transparent and unbiased system to ensure that only doctors with proven advanced excision skills and a comprehensive care team can be on their surgeons’ list.

Patients can select their surgeon based on their specific symptoms. This empowers patients to consult a doctor who truly understands the complexity of their condition. Patients can access specialists for endometriosis in the pelvis, bowels, bladder, thorax, heart, or diaphragm. They also can find help with infertility issues.

A highly specialized endo surgeon will take a holistic approach to treatment. This holistic approach includes managing secondary comorbidities such as infertility, even in stage III and IV disease patients. 

At iCareBetter, patients can also access expert physical therapists who understand the condition. Working with a physical therapist gives access to myofascial release techniques, visceral mobilization, and the tools to manage a susceptible nervous system for better pain management.

Team-based expert care improves post-operative outcomes. For some iCareBetter doctors, post-treatment reports of satisfactory pain relief could be over 80%, with less than 20% of women requiring subsequent pelvic surgery. Moreover, many patients see reduced pain relief requirements post-recovery.

Standards of excellence, such as those endorsed by iCareBetter, must become a driving force behind treatment protocols for Endometriosis. Women should no longer shoulder the pain and reduced quality of life associated with substandard care.

Conclusion

Endometriosis occurs due to the presence of endometrium-like cells found outside the uterus. The resulting inflammation, adhesions, and scarring can cause severe pain and symptoms related to the location of the lesions. By connecting patients with expert surgeons in endometriosis care, iCareBetter empowers patients to access the care leading to better outcomes. Advanced surgical excision, physical therapy, and an expert team-based approach can reduce pain, as well as skillfully manage secondary complications.
Find endometriosis specialists today.

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3 years ago Endometriosis Education , Endometriosis Physical Therapy No comment

Questions to Ask Your Physical Therapist When You have Endometriosis

Author: Dr. Rebecca Patton, PT, DPT

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“I feel like you’re the first physical therapist who understands endo.” It’s a statement I wish I didn’t hear as often as I do. Unfortunately, there has not been a resource specifically made to evaluate pelvic physical therapists’ knowledge about endometriosis before iCareBetter.

Education for physical therapists regarding endometriosis needs more advanced continuing education courses. But it doesn’t typically happen until after completing a doctoral program. For perspective, I self-taught for several years before seeking specific classes related to endometriosis care. Therefore, it wasn’t until years after specializing in pelvic pain treatment that I realized the inefficiency of care for those with endometriosis. We can do better, but we have a long way to go.

Communicating with a pelvic physical therapist before seeking treatment can allow you to ask important questions to ensure you’re finding a provider that is a good fit for you. For achieving this goal, take advantage of time-saving strategies such as a phone consultation before committing to a therapist. Here are a few questions you may want to ask during that phone consultation or the first visit with a pelvic physical therapist for your endometriosis issues.

Endometriosis Care Process with iCareBetter

1- Find an expert based on keyword/ specialty or state
2- choose your doctor from the list
3- Get the contact info
4- First call and consultation.
5- Get info regarding costs and care process
6- Receive care

Top endometriosis physical therapists

Endometriosis Physical Therapy

1. Are you familiar with the disease process and current treatment standards for endometriosis?

It is helpful when your treating therapist is up to date on current treatment standards, as with any diagnosis. Unfortunately, there is no specific physical therapy protocol for treating patients with endometriosis. However, physical therapists should understand who will be involved in your healthcare team and have a multidisciplinary approach (1). I aim to establish what provider, either GYN or expert surgeon, will be a point of contact on that first visit. 

2. Do they consider the whole body when treating your symptoms?

  Endometriosis is known as a pelvic disease, but we know it is much more than that. Your physical therapist needs to tap into their education to evaluate and treat the whole body. The secondary effect of endo is often an upregulated nervous system. On the initial visit, it is typical that your physical therapist will look at movement patterns from your neck to your feet. Internal pelvic floor assessments are common but certainly do not need to happen on the first visit. Pelvic floor function is only one component in a much larger picture of your overall function. Your individual goals and comfort will dictate how much treatment involves pelvic floor treatment. 

Advanced Treatments and education

Treatment involving the abdominal wall fascia, diaphragm, and viscera (organs) require additional advanced coursework compared to treating the pelvic floor. Therefore, you can ask them if they have taken additional coursework to treat the abdomen to get an idea of their experience. There is not one single treatment philosophy for the abdomen, but some courses focus on continuing education in this area. The most common that I am familiar with are The Barral Institute (2), Ramona Horton MPT, DPT (3), and Institute of Physical Art (4). Other courses involve manual nerve techniques such as Lumbar and Sacral Nerve Manual Assessment through the Herman and Wallace Pelvic Rehab Institute (5). These are just a few of the many available resources your physical therapist may use to learn more after graduate school. Some pelvic physical therapists create their treatment tanks to teach one another these skillsets.

Treatment strategies that help regulate an upregulated nervous system may be part of your care. These strategies can look like gentle hands-on treatment, questions to help you process how you relate to your body, and creating mindfulness along with movement. The connection of how our nervous system interprets information from our body is complex. A physical therapist can be a valuable resource to help you better understand the pain response and the nervous system.

Trauma-informed care in physical therapy does not substitute mental health treatment. A trauma-informed approach concerning physical therapy means understanding the entirety of the patient’s experience and the effects of that experience. Medical trauma can have a lasting response on an individual’s well-being (6). We know that those with endo, on average, have a delayed diagnosis. This delay can lead to a complicated relationship with the medical providers. Many patients with endo are seeking out pelvic PT after years of seeing various specialists. These experiences with the medical system can create barriers to a patient feeling comfortable with a new provider. 

For this reason, a trauma-informed approach to treatment is essential. Awareness of how these experiences may have impacted their patient is a critical portion of providing affirming care. You can ask your physical therapist about some processes that they use to create a safe environment. These processes should include consent before any treatment or touching, checking in with your emotions and body reaction during manual therapy, and providing adequate time to provide education throughout the session.

4. How much time will you have for a session?

Asking this question can ensure you have an idea of what to expect when going into your appointment. There is no magic number of minutes that will create a perfect appointment. However, the nature of endo being more complex means I prefer more time to establish a care plan. There are multiple factors to consider during the first evaluation. These factors include sexual health, daily function, bowel and bladder health, and personal goals. Having realistic expectations for each session is helpful to decrease additional medical trauma and find a therapist that fits your needs.

Patient care and human interaction are complex, and sometimes it takes time to establish a level of comfort with your PT. Every session of PT may not equal a breakthrough in pain. Retraining the nervous system takes time, especially when the body has been protecting itself due to chronic pain.

Ultimately, endo care is ideally a multidisciplinary approach. Your physical therapist can work closely with your gynecologist and other healthcare team members to find the best individual plan for you. 

If you have more questions about pelvic physical therapy, reach out for more information. 

Would you mind sharing with us what pleasant or unpleasant experiences you have had with your PT?

References:

1.      Agarwal SK, Foster WG, Groessl EJ. Rethinking endometriosis care: applying the chronic care model via a multidisciplinary program for the care of women with endometriosis. Int J Womens Health. 2019;11:405-410. Published 2019 Jul 23. doi:10.2147/IJWH.S207373

2.      Jean-Pierre Barral, DO, MRO(F), RPT. The Barral Institute.  Accessed September 1st, 2021. https://www.barralinstitute.com/

3.      Ramona Horton, MPT, DPT.  Herman and Wallace Pelvic Rehabilitation Institute. Accessed August 27th, 2021.  https://hermanwallace.com/faculty/ramona-horton

4.      Institute of Physical Art. 2015-2021. Accessed August 19th, 2021.  https://instituteofphysicalart.com/

5.      Nari Clemmons PT, PRPC.  Herman and Wallace Pelvic Rehabilitation Institute.  Accessed August 20th, 2021.  https://hermanwallace.com/faculty/nari-clemons6.      Michelle Flaum Hall and Scott E. Hall. When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma.  American Counseling Association.  March 24th, 2013.  Accessed August 19th, 2021. https://www.counseling.org/knowledge-center/vistas/by-year2/vistas-2013/docs/default-source/vistas/when-treatment-becomes-trauma-defining-preventing-

3 years ago Endometriosis , Endometriosis Education , Endometriosis Physical Therapy No comment

Physical Therapy Before Excision Surgery for Endometriosis

Table of contents

Endometriosis can cause multiple issues for patients. And it can create the need for a multidisciplinary care team to address chronic pelvic pain. Physical therapy is one example of part of a multidisciplinary treatment plan for endometriosis symptoms. Guest writer Rebecca Patton, PT, DPT, discusses considerations for using physical therapy while awaiting excision surgery:

Pelvic physical therapy has gained more following and prompted much-needed discussions in recent years.  However, pelvic physical therapy looks quite different for someone with chronic pelvic pain and endometriosis.

The reality is that pelvic physical therapists may be the first line of defense to refer a patient to a specialist.  First, because we have direct access, meaning a patient can see us for an evaluation before seeing a physician.  Second, because symptoms of endometriosis are often missed or dismissed by referring providers.  In the latter case, someone may be referred to physical therapy before excision surgery or even before seeing an endo specialist.

Physical Therapists can Optimize Care by Helping a Patient Get to a Specialist while Providing Physical Therapy Treatment.  

If we are seeking to provide the best care available for the treatment of endo, getting a faster diagnosis and referring a patient to an excision specialist is the primary goal.  With a thorough medical history including bowel and bladder habits, menstrual symptoms, pelvic pain symptoms, previous treatment, and understanding the patient’s experience, a pelvic physical therapist can create a differential diagnosis list that may include endometriosis.  If endometriosis is suspected, a referral to an excision specialist should be given to the patient and explained. 

Endo Specialists’ Wait Times Vary Greatly Depending on Where You are Located. 

In my personal experience in Phoenix, AZ, a large metropolitan area with several specialists, it takes anywhere from 3-12 months.  More time if we are in the middle of a global pandemic.  Decreased access in rural areas may also increase waiting times.  One positive change is the inclusion of virtual appointments which may improve access for those in rural areas. 

During the waiting period, the goal is to manage pain and maintain some regularity with bowel and bladder habits until excision surgery.  Internal pelvic floor retraining may or may not be appropriate during this time. 

As mentioned before, physical therapy before excision surgery is going to look different from treatments for other conditions.  As a patient, you want to ensure the physical therapist you are seeing treats patients with endo regularly.  You may want to consult with them prior about how often they treat patients with endo and what treatments they use specifically.  Additional coursework for visceral and abdominal manual therapy techniques, nerve mobilization, and myofascial therapy techniques will be helpful.  

Most Studies Research the Effectiveness of Physical Therapy Following Excision Surgery.  What About Physical Therapy Before Excision Surgery?

Zhao et al. (1) found that 12 weeks of PMR (progressive muscle relaxation) training is effective in improving anxiety, depression, and quality of life of endometriosis patients under GnRH agonist therapy.  These participants had not received excision surgery.

Awad et al. (2) found improvements in posture and pain with an 8-week regular exercise program in those diagnosed with mild to moderate endometriosis.  This exercise program included posture awareness, diaphragm breathing, muscle relaxation techniques, lower back and hip stretches, and walking. Of note, this exercise program was not vigorous exercise.  These participants were also receiving hormonal treatment but not receiving pain medication. 

Both studies did not say that physical exercise or PMR plays a role in the prevention of the occurrence or progression of endometriosis.   Both studies were short-term (8-12 weeks) and did not explore pain management directly before excision or outcomes after excision.

In the time that a patient is waiting for excision surgery, I believe physical therapy treatment can be effective at minimizing overall pain levels and improving quality of life.

A Few Factors to Keep in Mind if You are Seeking Pelvic Physical Therapy Before Excision Surgery

1.       Your symptoms after physical therapy should not last more than 1-2 days and should feel manageable. Being bedridden for a week after physical therapy is not a helpful treatment.  If you experience this, be sure to communicate it with your physical therapist to adjust the plan.  Not all pelvic PTs are experienced with this type of treatment and they may create an exercise plan that is too vigorous. 

2.       Internal pelvic floor treatment is not always the most helpful in this situation and may exacerbate symptoms. An individualized plan is important to discuss with your provider.

3.       You are in charge of your body. If you don’t feel like treatment is working then communicate that to your team and discuss other options.  It is always okay to voice your concerns to change the treatment to fit you best.

4.       Treatment before surgery requires a multidisciplinary team.  This may include other pain management options including medication.

iCareBetter is doing the groundwork to vet pelvic physical therapists. 

Rebecca Patton PT, DPT (If you are seeking a pelvic PT, I accept consultations through my website for in person and telehealth appointments: https://www.pattonpelvichealth.com/)

For more resources on physical therapy for endometriosis see: https://nancysnookendo.com/learning-library/treatment/lessons/physical-therapy-resources/

References

Zhao L, Wu H, Zhou X, et al.: Effects of progressive muscular relaxation training on anxiety, depression and quality of life of endometriosis patients under gonadotrophin-releasing hormone agonist therapy. Eur J Obstet Gynecol Reprod Biol, 2012, 162: 211–215. [PubMed] [Google Scholar]

Awad E, Ahmed HAH, Yousef A, Abbas R. Efficacy of exercise on pelvic pain and posture associated with endometriosis: within subject design. J Phys Ther Sci. 2017;29(12):2112-2115. doi:10.1589/jpts.29.2112 [NCBI]

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