Endometriosis: Causes, Symptoms, Diagnosis, and Treatment of an Underestimated Condition

Today’s article is indeed about a so-called “women’s issue.” Nevertheless — or rather for that very reason — there are many data and knowledge gaps regarding endometriosis.

We shed light on what happens in the body in this chronic condition, which typical symptoms may occur, and why complaints extend far beyond “severe period pain.” In addition, we discuss why diagnosis often takes years, which non-specific symptoms make early detection more difficult, and why endometriosis is frequently underestimated.

What? How? Why?: The Complex Mechanisms of Endometriosis

Endometriosis is a chronic inflammatory disease in which tissue similar to the uterine lining settles outside the uterus and can cause typical endometriosis symptoms such as severe pain as well as cycle-independent complaints.

Despite its location outside the uterus, this hormonally active tissue responds to the menstrual cycle and can trigger inflammatory reactions, microbleeding, and adhesions, since blood and tissue components cannot drain physiologically. In the long term, this promotes pain and persistent complaints. At the same time, inflammatory mediators intensify inflammatory processes and influence pain processing in the nervous system — an issue we have previously discussed in the migraine articles (Zondervan et al., 2018; Zondervan et al., 2020; ESHRE Guideline, 2022).

Endometriosis Symptoms: Far More Than “Severe Period Pain”

Endometriosis is most commonly associated with severe pain. This is correct; however, the intensity of pain does not necessarily correspond to the extent of endometriotic lesions. Even small lesions can cause considerable symptoms (Zondervan et al., 2020). This discrepancy contributes significantly to the fact that the disease is often diagnosed late and its severity underestimated.

Common endometriosis complaints include:

·       severe menstrual pain (dysmenorrhea)

·       chronic lower abdominal or pelvic pain

·       pain during sexual intercourse (dyspareunia)

·       cycle-dependent bowel or bladder complaints

·       pronounced exhaustion (fatigue).

This illustrates how variable the symptoms can be.

Endometriosis Signs: Concerningly Non-Specific

Especially in a gradual course, early indications and signs are often overlooked or initially attributed to other causes, which naturally delays diagnosis.

Such non-specific signs include:

·       increasing pain over several cycles, not strictly tied to menstruation

·       pain during urination or bowel movements during the cycle

·       reduced resilience in everyday life

·       marked exhaustion without a clear cause.

Diagnostics are complex and often require a longer process of clarification. Studies show that more than five years often pass between the first signs and a confirmed diagnosis (Zondervan et al., 2020). These figures are indeed concerning and should give medical professionals pause for thought.

Reasons include (in addition to the mentioned non-specific symptom patterns):

·       lack of simple blood markers

·       overlap with PMS, chronic pain syndromes, or irritable bowel syndrome

·       societal normalization of period pain.

Imaging procedures such as ultrasound or MRI can provide indications but are not sufficiently sensitive in all cases. The diagnostic gold standard remains laparoscopic evaluation and histological confirmation, i.e., laparoscopy and tissue sampling with microscopic examination (ESHRE Guideline, 2022).

Gender Data Gap: Structural Research Gaps in Endometriosis

The gender data gap describes a structural deficit in research and care in medicine, in which diseases that primarily affect women have been — and, in some cases, still are — insufficiently studied, diagnosed, and therapeutically prioritized.

This pattern is clearly evident in the context of endometriosis: despite high prevalence and considerable disease burden, the condition often isn’t properly diagnosed and comparatively under-researched in relation to its medical relevance.

A central aspect lies not only in missing data, but also in the clinical classification of symptoms. Cycle-related pain, severe menstrual pain, or chronic exhaustion were for decades mostly assessed as “typical” or “normal” complaints, but not systematically considered as possible indications of a chronic disease such as endometriosis. This has led, and continues to lead, to affected individuals sometimes presenting to physicians late and to complaints not being consistently investigated diagnostically.

In combination with structural research gaps and the lack of standardized biomarkers, the complexity of this symptomatically highly variable disease further complicates early diagnosis. Against this background, the gender data gap is not classified as a “statistical problem,” but as a relevant factor in delayed diagnosis, gaps in care, and the long-underestimated clinical significance of endometriosis (Zondervan et al., 2018; ESHRE Guideline, 2022).

Conventional Medical Approach: Hormonal Treatments and Surgical Interventions

Conventional medical measures primarily aim at controlling symptoms.

Most commonly used are:

·       Pain therapy (including relaxation techniques, physiotherapy, or psychological support)

·       Hormonal treatments (e.g., progestins)

·       Combined hormonal contraceptives (e.g., combined oral contraceptive pill, vaginal ring, or hormonal patch)

·       GnRH analogues (“gonadotropin-releasing hormone” to suppress estrogen production)

·       Surgical removal of endometriosis lesions or, in some cases, even the uterus.

These therapies can reduce symptom burden and improve quality of life, but they do not provide a cure (ESHRE Guideline, 2022).

Naturopathic Perspective: Holistic Management of Chronic Inflammation

There’s nothing wrong with physiotherapy or psychotherapy; when it comes to painkillers, it’s better to be cautious. For complementary medicine and naturopathy, it is particularly relevant that chronic inflammatory processes are considered central components of endometriosis. Factors such as nutrition, sleep, and stress can influence inflammatory processes:

o   Acupuncture is discussed in the scientific literature in the context of endometriosis-associated pain. Guidelines and reviews indicate that acupuncture is frequently used by affected individuals, but that the evidence is heterogeneous. Here, the principle often favored in conventional medicine applies: mechanisms that are not fully understood can be treated as if they were quasi non-existent. Nevertheless, acupuncture is professionally classified as a supportive measure within a multimodal pain management approach (Zondervan et al., 2018; ESHRE Guideline, 2022). 

o   Mindfulness, yoga, and mind-body approaches are increasingly being studied in connection with chronic pain syndromes. We view purely symptomatic treatment critically. However, high-quality reviews emphasize that biopsychosocial approaches can improve pain coping and quality of life without directly influencing the underlying endometriosis lesions. These methods are therefore classified as complementary strategies for stabilizing stress axes, pain processing, and functional resilience (Hilton et al., 2017). — We trust, dear readers, that you are well aware that meditation or yoga do not “heal” inflammatory lesions.

o   Fatigue is a frequently described and clinically relevant symptom in endometriosis and part of the overall disease burden associated with chronic pain, inflammatory processes, and reduced quality of life. The literature indicates that exhaustion cannot be explained by sleep deprivation alone, but must be considered in the context of chronic illness, pain chronification, and systemic burden. Accordingly, evidence-based strategies primarily aim at pain reduction and functional stabilization, not at isolated sleep-related interventions (Zondervan et al., 2018; As-Sanie et al., 2019).

o   Certain nutrients (such as vegetables and omega-3 fatty acids) are modulators of inflammatory processes and hormonal regulation (Koelman et al., 2022). Guidelines emphasize that diet and other lifestyle factors can be classified as supportive (Parazzini et al., 2013; ESHRE Guideline, 2022).

Endometriosis: Highly Complex Causes and Symptoms, Comparatively Limited Diagnostics

Endometriosis is neither rare — due to the circumstances described, it is difficult to make precise statements about how widespread it truly is — nor is it a “normal accompaniment” of the menstrual cycle. It is a chronic, inflammatory disease with complex hormonal, immunological, and neurological mechanisms.

Diagnostic delays, the societal normalization of pain, and research gaps demonstrate how important a differentiated medical classification is. Complaints should therefore not be trivialized but clarified at an early stage.

FAQ – Frequently Asked Questions About Endometriosis

1. Can endometriosis occur without cycle-dependent pain?

 Yes, and this is exactly what makes diagnosis considerably more difficult. Many people associate endometriosis exclusively with severe menstrual pain, yet the disease can also be accompanied by chronic, non-cycle-related pain, exhaustion, back pain, or diffuse lower abdominal complaints. In some cases, bowel, bladder, or fatigue symptoms are even predominant, while classic menstrual pain is less pronounced. These atypical courses contribute to endometriosis often being medically recognized late or initially attributed to other conditions.

2. Does endometriosis automatically affect fertility?

Endometriosis can impair fertility, but it does not have to. The decisive factors are the severity, localization of the lesions, inflammatory processes, and possible adhesions in the pelvic area. Many affected individuals can become pregnant despite the diagnosis, which is why individual medical assessment is more important than generalized statements.

3. Can endometriosis also affect the bowel or bladder?

Yes, endometriosis lesions can also settle on the bowel, bladder, or peritoneum. In such cases, cycle-dependent complaints such as pain during bowel movements, bloating, a feeling of pressure, diarrhea, constipation, or pain during urination often occur. These symptoms are not infrequently initially misinterpreted as irritable bowel syndrome or a urological problem.

4. Are there specialized doctors or centers for endometriosis diagnostics?

Yes. In addition to gynecologists, there are certified endometriosis centers that specialize in diagnostics and treatment. Interdisciplinary teams (gynecology, pain medicine, radiology, and, if necessary, gastroenterology) often work together there, which is particularly useful in complex or atypical courses. In the case of long-lasting complaints without a clear diagnosis, a referral to such a center can be medically advisable.

Further information, including on many other topics, can be found in the articles on our blog, the volumes of our “Codex Humanus,” and the “Medizinskandale” series. Feel free to visit our online shop.

Sources:

·       Zondervan, K. et al. (2018): “Endometriosis,” Nature Reviews Disease Primers.

·       Zondervan, K. et al. (2020): “Endometriosis,” New England Journal of Medicine.

·       European Society of Human Reproduction and Embryology (ESHRE); Endometriosis Guideline Group “ESHRE guideline: endometriosis,” Human Reproduction Open, 2022.

·       Hilton, L. et al., (2017): “Mindfulness Meditation for Chronic Pain: Systematic Review and Meta-analysis,” Annals of Behavioral Medicine.

·       As-Sanie, S. et al. (2019): “Assessing research gaps and unmet needs in endometriosis,” American Journal of Obstetrics and Gynecology.

·       Koelman, L. et al. (2022): “Effects of Dietary Patterns on Biomarkers of Inflammation and Immune Responses: A Systematic Review and Meta-Analysis of Randomized Controlled Trials,” Advances in Nutrition.

·       Parazzini, F. et al. (2013): “Diet and endometriosis risk: a literature review,” Reproductive BioMedicine Online.