The Many Unmet Needs of Endometriosis

Endometriosis is typically defined by the abnormal growth of endometrial tissue outside the uterus. It is associated with a variation of symptoms that are most often cited as painful periods, pelvic pain and infertility. The inflammatory nature of endometriosis contributes to the formation of scar tissue and adhesions, which can exacerbate symptoms and complicate treatment.  Because of the diverse symptoms associated, the diagnosis of endometriosis is not straightforward by medical professionals. This is often because the inflammatory origin of endometriosis is typically overlooked.

What is Endometriosis?

Endometriosis is recognized as a complex, chronic inflammatory disease although some scientific professionals consider the more severe cases of endometriosis as a syndrome or collection of health issues.

There are 4 defined stages of endometriosis, each stage representing an increasing degree of severity and extent of endometrial tissue growth outside the uterus.

• Stage 1 (Minimal): Small lesions and superficial endometrial implants are present outside the uterus, with little to no scar tissue.
• Stage 2 (Mild): There are more and deeper implants compared to Stage 1, with some scar tissue (adhesions) forming.
• Stage 3 (Moderate): This stage involves numerous deep implants and small cysts on one or both ovaries, alongside significant scar tissue and adhesions.
• Stage 4 (Severe): The most advanced stage, characterized by many deep implants, large cysts (endometriomas) on one or both ovaries, and extensive scar tissues and adhesions. This stage often involves severe symptoms including chronic pelvic pain.

The World Health Organization (WHO) recognizes symptoms of endometriosis as pain to be most noticeable during a period, pain during or after sex, and pain when urinating or defecating. WHO also indicates that some people also experience chronic pelvic pain, heavy bleeding during periods or between periods, have trouble getting pregnant, and may experience bloating, nausea or fatigue.

However, some women with endometriosis don’t experience any menstrual pain-like symptoms – this is known as silent endometriosis. Someone with silent endometriosis might not experience typical symptoms like pain, yet still have lesions, tissue growth or dysregulated processes. In fact, even if a person does not experience noticeable symptoms, dysregulated processes such as impaired hormone receptors and hormonal imbalances, inflammation, and oxidative stress are a minimum occurrence in endometriosis. These underlying processes are still contributing to the disease’s pathology.

Silent endometriosis can occur at any stage, specifically referring to the lack of observable menstrual-like pain symptoms. And to make matters even more convoluted, symptoms’ intensity does not always correlate with the disease stage. That is, even women with stage 1 endometriosis may experience severe pain, while those with stage 4 may have few symptoms.

Sounds confusing? Yes, even the medical community is having a hard time encompassing the all-inclusive definition of endometriosis.

Why is Endometriosis a Public Health Concern?

The development and persistence of endometriosis are influenced by a combination of immunological, hormonal and genetic factors. It is now widely accepted that endometriosis is an estrogen-dependent inflammatory disease that is associated with various other conditions like endometrial cancers, cardiovascular and autoimmune diseases.

According to the World Health Organization, endometriosis affects roughly 10% of women and girls of reproductive age globally, but I suspect that the impact and number of women affected are far, far greater. This is because many medical professionals only consider endometriosis symptoms associated with menstrual cycles and pelvic pain.  Research has shown that inflammation linked to endometriosis can affect various systems in the body, including the digestive tract and the immune system.

In the digestive tract, symptoms include:

• gastrointestinal pain and discomfort
• bloating and gas
• diarrhea or constipation
• nausea and vomiting
• irritable bowel syndrome (IBS)-like symptoms.

Associated endometriosis symptoms with the immune system include:

• chronic fatigue
• allergies and sensitivities
• autoimmune disorders
• increased inflammation
• infection susceptibility.

If medical professionals are not considering digestive or immune symptoms associated with endometriosis as identifying factors, many women with the disease may be overlooked.

Furthermore, the impact on women’s quality of life is profound as she struggles with endometriosis (and infertility for that matter). Endometriosis can cause debilitating pain, interfere with daily activities, and contribute to mental health challenges such as anxiety and depression. Moreover, the ongoing pain and discomfort can lead to significant emotional and physical strain, affecting personal relationships, work productivity, and overall well-being.

Why is the Diagnosis of Endometriosis Often Delayed or Overlooked?

Depending on the severity of endometriosis, some patients often disregard or normalize symptoms which prolong proper diagnosis and otherwise induce misdiagnoses. Consider a woman (such as myself) who has mild-to-moderate pelvic pain discomfort prior to or during her period. If she has typically experienced this type of discomfort for years or since the onset of her menstrual cycles as a teenager, she may not be aware of any adversity. Endometriosis can start showing symptoms during adolescence, and more reports have progressively indicated that many women with endometriosis have experienced symptoms as teenagers.

Endometriosis can indeed be more accurately classified as a syndrome, or collection of symptoms because of the number of different bodily systems it can affect. The complexity results in the fact that the type of symptoms a woman expresses can vary greatly among women with endometriosis and not everyone will experience all or the same combination of these symptoms. This is a major factor that contributes to challenges in the proper diagnosis of endometriosis.

Despite much progress in scientific research studies, the pathogenesis of endometriosis remains not well agreed upon by conventional medicine. But a growing number of women with endometriosis have been identified to have underlying health issues such as immune dysfunction, chronic inflammation and insulin resistance. And for women who present with such systemic issues, lifestyle intervention and diet changes have been found to reverse the symptoms of endometriosis, and otherwise allow them to regain well-being and fertility.

How the Current Diagnosis and Treatment Options for Endometriosis Emphasize Unmet Needs.

The current diagnostic approach for endometriosis involves a combination of medical history, pelvic exams, imaging test like ultrasound and MRI as well as laparoscopy, which allows for direct visualization and biopsy. But while researchers are exploring endometrial biopsies and blood tests to identify specific genetic markers and biomarkers for endometriosis, advanced imaging techniques are not always accessible for diagnosing endometriosis in all women. In addition, laparoscopy is not a convenient or routine choice due to its invasive nature, the need for general anesthesia and recovery time.

Considering this, the lack of cost-effective and non-invasive diagnostic methods highlight the unmet diagnostic needs of endometriosis. But, limited therapeutic success has also been claimed for endometriosis as well.

Traditional surgery for treatment of endometriosis does not resolve the root cause of endometriosis (immune dysfunction), rather may only alleviate the symptoms. That is, surgical removal of lesions often has a high recurrence rate because removing endometriosis-related lesions does not address the underlying factors for chronic inflammation driving this condition. This is often why many patients see that conditions reappear despite surgery treatments.

Gonadotropin-releasing hormone (GnRH) analogs are used to treat endometriosis although studies have shown that some patients develop gastrointestinal complications following this treatment. Progesterone therapy is another approach used to reduce or manage symptoms for endometriosis. However, some women experience progesterone resistance, a condition where the body’s tissues are less responsive to the hormone progesterone due to the downregulation or dysfunction of progesterone receptors (PGRs). Despite normal or elevated progesterone levels, this makes it difficult for the body to utilize the hormone effectively, leading to various reproductive health issues. Patients with progesterone resistance often experience exacerbated inflammation and/or endometrial growth and pain, while undergoing typical progesterone-based treatments.

A Strategy that Resolves Endometriosis Symptoms and Helps Restore Fertility. What can you do?

Lifestyle changes, including diet and exercise adjustments, have a significant role in managing endometriosis symptoms. Scientific reports (and my personal experience) has shown that the symptoms of endometriosis are closely linked to lifestyle factors such as an inflammatory diet, sedentary lifestyle, the presence of chronic infections, gut imbalances, chronic stress, toxins and excess adipose tissue. Stress management techniques may also be recommended to help alleviate some of the associated symptoms.

At the core, it is the diet (daily lifestyle patterns) of patients that often contributes to worsening nutritional deficiencies, while inflammatory foods can exacerbate gut-rooted inflammation. Addressing these issues by removing common inflammatory triggers, eliminating infections, and restoring gut microbial balance is crucial. Detoxification efforts further support the process of restoration. Adopting these measures is the most sustainable and effective strategy for relieving endometriosis symptoms, overcoming infertility and restoring overall health.

Key Takeaways

Endometriosis is a public health problem with many unmet conceptual, diagnostic and treatment needs.

Many patients with endometriosis may disregard or normalize their symptoms, leading to delayed diagnosis and misdiagnosis. This can happen with women who have mild-to-moderate pelvic pain, often enduring such discomfort since adolescence without realizing its abnormal. Endometriosis can start showing symptoms early in life, yet its complexity, variability of symptoms among individuals and lack of consensus among medical professionals make the diagnosis challenging. Despite significant research, the exact causes of endometriosis remain debated in medical communities, creating an obstacle in uniformly identifying, diagnosing and treating the disease at its inflammatory origin.

The systemic nature of endometriosis underscores its potential to affect overall health, leading to conditions like endometrial cancers, cardiovascular diseases, and autoimmune disorders. Even in the absence of symptoms, dysregulated processes associated with endometriosis can impact fertility. Some women with endometriosis have underlying issues like immune dysfunction and insulin resistance, and lifestyle interventions have shown promise in reversing symptoms. Such changes, including diet. stress management, gut microbial balance, eradicating infections and subsequent detoxification play a crucial role in managing endometriosis symptoms by addressing inflammatory triggers and promoting overall health.

What’s important to remember is that any woman who has experienced infertility, explained or unexplained, should consider the possibility of endometriosis even if they are otherwise asymptomatic of menstrual pain and endometrial growths that are characteristic of the disease. The changes in hormone receptors, inflammation, oxidative stress and other dysregulations can still contribute to infertility, even in the absence of lesions or endometrial growths.

Check out my book for more information on my personal experience in overcoming unexplained infertility.

Study References

[1] World Health Organization. (n.d.). Endometriosis. https://www.who.int/news-room/fact-sheets/detail/endometriosis#:~:text=Endometriosis%20affects%20roughly%2010%25%20(190,%2D%20and%20middle%2Dincome%20countries.

[2] Abramiuk M, Mertowska P, Frankowska K, Świechowska-Starek P, Satora M, Polak G, Dymanowska-Dyjak I, Grywalska E. How Can Selected Dietary Ingredients Influence the Development and Progression of Endometriosis? Nutrients. 2024 Jan 2;16(1):154. doi: 10.3390/nu16010154. PMID: 38201982; PMCID: PMC10781184.

[3] Ek M, Roth B, Ekström P, Valentin L, Bengtsson M, Ohlsson B. Gastrointestinal symptoms among endometriosis patients–A case-cohort study. BMC Womens Health. 2015 Aug 13;15:59. doi: 10.1186/s12905-015-0213-2. PMID: 26272803; PMCID: PMC4535676.

[4] Smolarz B, Szyłło K, Romanowicz H. Endometriosis: Epidemiology, Classification, Pathogenesis, Treatment and Genetics (Review of Literature). International Journal of Molecular Sciences. 2021; 22(19):10554. https://doi.org/10.3390/ijms221910554

[5] Toczek J, Jastrzębska-Stojko Ż, Stojko R, Drosdzol-Cop A. Endometriosis: New Perspective for the Diagnosis of Certain Cytokines in Women and Adolescent Girls, as Well as the Progression of Disease Outgrowth: A Systematic Review. Int J Environ Res Public Health. 2021 Apr 29;18(9):4726. doi: 10.3390/ijerph18094726. PMID: 33946650; PMCID: PMC8125151.