Endometriosis and its delayed diagnosis—Why are women’s health issues lagging so far behind?

Endometriosis, a condition where tissue similar to the lining of the uterus grows outside of the uterus, affects millions of individuals worldwide. Its current prevalence rate is considered to be 1 in 10 women. However, it wouldn't be a big surprise if the prevalence is much higher because of underreporting, misdiagnosing, and delay in diagnosis. Diagnosing endometriosis remains a challenging and often drawn-out process. In this blog post, I will delve into the complexities surrounding the diagnosis of endometriosis, exploring why it takes so long to identify and address this debilitating condition.

Understanding Endometriosis

Before diving into the diagnostic challenges, it's essential to grasp what endometriosis entails. This condition manifests when endometrial-like tissue grows outside the uterus, commonly on organs within the pelvic cavity, but not limited to it. Endometriosis lesions have been found on the diaphragm, lungs, ears, eyes, and even in the brain. The tissue responds to hormonal fluctuations, leading to inflammation, scarring, and severe pain, especially during menstruation. However, as the chronicity of the condition increases, the pain can also become chronic and not limited to a specific time in the menstrual cycle.

Some of the other pathological mechanisms include immune dysfunction, apoptosis suppression, genetics, stem cells, and neurological disorders, in addition to the commonly understood mechanisms such as hormonal changes and inflammation.

Diagnostic Dilemmas

• Vague Symptoms: Endometriosis presents a myriad of symptoms, ranging from pelvic pain, heavy menstrual bleeding, and fatigue to digestive issues such as IBS. These symptoms overlap with various other gynecological and gastrointestinal conditions, complicating the diagnostic process. 
• Normalization of Symptoms: Many individuals with endometriosis endure excruciating pain for years and are often dismissed as 'normal' menstrual discomfort. Consequently, they may not seek medical attention until the symptoms become unbearable or significantly impact their quality of life.
• Lack of Awareness: Despite its prevalence, endometriosis remains widely misunderstood, even among healthcare providers. Limited awareness leads to misdiagnosis or delayed diagnosis, prolonging the suffering of patients.
• Prevalent theory: Sampson's retrograde menstruation theory has long guided healthcare providers to believe that birth control, pregnancy, or something as drastic as a hysterectomy will resolve the symptoms of their patients. However, endometriosis has been found in nonmenstruating young girls, female fetuses, and even men, strongly refuting this popular theory. Therefore, staying tunnel-visioned and focusing all the treatment strategies around the reproductive organs and hormones can keep the patient from finding the proper treatment for themselves for years. Just to be clear, some people truly can find relief with the above-mentioned strategies; however, treating all patients with endo alike without a detailed investigation can make the proper treatment inaccessible to them.
• Diagnostic Tools: Definitively diagnosing endometriosis typically requires invasive procedures such as laparoscopy. Non-invasive diagnostic tools like ultrasounds and MRI scans may not always detect endometrial lesions accurately, leading to false negatives or inconclusive results.
• Stigma and Gender Bias: Women's pain is often dismissed or trivialized, contributing to diagnostic delays. Gender bias in healthcare settings can lead to the minimization of women's symptoms, further exacerbating the challenges of diagnosing endometriosis.

The Role of Advocacy and Education

Raising awareness about endometriosis is crucial for promoting timely diagnosis and proper management. Advocacy efforts aimed at destigmatizing menstrual health issues and improving medical training can empower individuals to seek help sooner and equip healthcare providers with the knowledge to recognize and address endometriosis effectively.

Diagnosing endometriosis is a complex puzzle, fraught with challenges stemming from symptom variability, lack of awareness, and systemic biases. Addressing these barriers requires a multifaceted approach involving improved education, advocacy, and research into non-invasive diagnostic techniques. By shedding light on the diagnostic delays of endometriosis, we can strive towards earlier detection, better management, and improved quality of life for those affected by this condition.

And let's not forget - the delay in diagnosing endometriosis is just one example of a broader issue: the systemic neglect and underestimation of women's health concerns within medical practice and society at large. Several factors contribute to this lag in women's health:

• Historical Neglect: Throughout history, medical research and practice have predominantly focused on male bodies, leading to a significant knowledge gap in understanding female-specific health conditions. Women's health concerns, including reproductive disorders, have often been sidelined or trivialized.
• Gender Bias in Medicine: Gender bias pervades medical practice, leading to the underestimation and dismissal of women's symptoms. Women are more likely to have their pain downplayed or attributed to psychological factors, delaying diagnosis and appropriate treatment.
• Lack of Research Funding: Women's health conditions, including endometriosis, receive disproportionately less research funding compared to diseases that predominantly affect men. This disparity hampers the development of effective diagnostic tools and treatment options.
• Societal Stigma Surrounding Women's Health: Taboos and stigma surrounding menstruation and reproductive health further contribute to delays in seeking medical care for conditions like Endometriosis. Women may feel embarrassed or ashamed to discuss their symptoms, leading to prolonged suffering in silence.
• Inadequate Medical Training: Medical education often fails to adequately prepare healthcare providers to recognize and address women's health issues. Many doctors freely speak about the lack of medical training they received in women's health topics. This results in misdiagnosis, inappropriate treatment, and unnecessary suffering for patients.
• Lack of Advocacy and Awareness: Limited public awareness and advocacy efforts contribute to the perpetuation of myths and misconceptions surrounding women's health. Increased awareness and advocacy are essential for challenging stereotypes, promoting early detection, and advocating for better care and support for individuals with conditions like endometriosis.

Addressing these systemic challenges requires a concerted effort from healthcare providers, policymakers, researchers, and society as a whole. By prioritizing women's health, investing in research, improving medical education, and challenging gender biases, we can work towards closing the gap and ensuring equitable access to quality healthcare for all individuals, regardless of gender.

References:

Redwine, David Byron. "Was Sampson Wrong?" Fertility and Sterility, vol. 78, no. 4, 2002, pp. 686-693., https://doi.org/10.1016/s0015-0282(02/03329-0.

Saunders, Philippa T.K., and Andrew W. Horne. "Endometriosis: Etiology, Pathobiology, and Therapeutic Prospects." Cell, vol. 184, no. 11, May 2021, pp. 2807-2824,

https://doi.org/10.1016/j.cell.2021.04.041

Sourial S, Tempest N, Hapangama DK. Theories on the pathogenesis of Endometriosis. Int J Reprod Med. 2014;2014:179515. doi: 10.1155/2014/179515. Epub

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