Endometriosis is a complex and often overlooked condition that affects millions globally. Despite its prevalence and profound impact, many individuals face significant barriers to diagnosis, treatment, and understanding. Here, we explore the realities of endometriosis, its causes, impacts, and the urgent need for systemic change.

What is Endometriosis?

Endometriosis is a chronic inflammatory condition where tissue similar to the lining of the uterus (endometrium) grows outside the uterus. These growths, called lesions or implants, commonly appear on the ovaries, fallopian tubes, and the outer surface of the uterus. In rare cases, they can spread to areas such as the bladder, intestines, and even the lungs (Zondervan et al., 2020).

Unlike normal endometrial tissue that sheds during menstruation, these lesions have no exit route, causing internal bleeding, inflammation, and scar tissue formation. These factors often result in severe pain, organ damage, and fertility challenges. Endometriosis affects an estimated 1 in 10 women and individuals assigned female at birth, yet its exact cause remains unknown (Viganò et al., 2024).

Common Symptoms Include:

• Chronic pelvic pain, especially during menstruation.
• Painful intercourse (dyspareunia).
• Heavy or irregular menstrual bleeding.
• Fatigue, bloating, and nausea.
• Infertility or difficulty conceiving.

Despite its significant impact, many individuals endure delays in diagnosis, averaging 7–10 years, due to symptoms being dismissed or misattributed to other conditions such as irritable bowel syndrome (IBS) or pelvic inflammatory disease (PID) (The Conversation, 2023).

Why Does Endometriosis Occur?

While the exact cause of endometriosis is unclear, several theories attempt to explain its development:

• Retrograde Menstruation: Menstrual blood flows backwards into the pelvic cavity, carrying endometrial cells that implant and grow.
• Immune Dysfunction: The immune system may fail to detect and destroy these abnormal growths.
• Genetics: A family history of endometriosis increases the likelihood of developing the condition.
• Hormonal Factors: Higher estrogen levels can promote the growth of endometriosis lesions.
• Environmental Factors: Exposure to endocrine-disrupting chemicals, such as dioxins, may increase the risk of developing the condition.

The Impact on Life

Endometriosis is far more than “just a painful period.” Its effects ripple through every aspect of life:

• Physical Health: Persistent pain, heavy bleeding, and fatigue reduce the ability to engage in daily activities.
• Mental Well-Being: The emotional toll of living with chronic pain and fertility challenges can lead to anxiety and depression.
• Social and Professional Relationships: Many individuals face disruptions in their careers, personal relationships, and hobbies due to their symptoms.

Economically, the condition imposes a massive burden, with the EU estimating costs of €30 billion annually from healthcare expenses and lost productivity (Viganò et al., 2024).

Why is Diagnosis So Delayed?

The delays in diagnosing endometriosis stem from a combination of societal and systemic factors:

1. Gender Bias in Healthcare: Women’s reports of pain are often dismissed or minimised, with many told their symptoms are “normal” or stress-related (Benenden Health, 2023).
2. Lack of Provider Awareness: Many general practitioners and gynaecologists need more training to recognise endometriosis’s complex and varied symptoms.
3. Social Stigma Around Menstruation: Cultural taboos discourage individuals from seeking help for severe period pain.
4. Economic Neglect: Insufficient funding for research means diagnostic tools remain invasive and time-consuming, further delaying care.

The Gender Funding Gap: A Stark Comparison

The chronic underfunding of endometriosis research is even more striking when contrasted with conditions that primarily affect men. For example, male pattern baldness, a non-life-threatening cosmetic condition , has historically received significantly more research funding than endometriosis, despite the latter affecting millions globally and causing severe pain, infertility, and substantial disability (Becker et al., 2021).

This disparity reflects deep-rooted systemic biases in how research priorities are established, often favouring conditions that impact male bodies or are perceived as more commercially profitable. While baldness treatments attract substantial pharmaceutical investment due to the lucrative market for hair loss products, endometriosis has long been sidelined as a “women’s issue,” deemed less urgent or profitable by comparison (Becker et al., 2021; Mishra, 2018).

The result is a research landscape where individuals living with endometriosis must endure invasive diagnostic procedures, limited treatment options, and decades-long waits for scientific breakthroughs that remain painfully slow in arriving.

Endometriosis and the Gendered Nature of Medical Neglect

The ongoing neglect of endometriosis is deeply rooted in historical biases that have long dismissed women’s pain as emotional, exaggerated, or psychosomatic (Hoffmann and Tarzian, 2001). As a result, many individuals with endometriosis experience repeated invalidation by healthcare providers, contributing to delays in both diagnosis and effective treatment.

Historically, the so-called “hysteria” diagnosis in the 19th and early 20th centuries pathologised women’s health complaints as irrational or emotionally driven (Showalter, 1997). While modern medicine has advanced, echoes of these attitudes persist. Studies continue to show that women’s pain is more likely to be minimised or misattributed compared to men’s, even when presenting with identical symptoms (Samulowitz et al., 2018). Endometriosis serves as a powerful example of how structural gender bias continues to shape clinical outcomes.

Furthermore, the invisibility of menstrual health within public discourse contributes to societal ignorance around endometriosis. The cultural stigma surrounding menstruation creates an environment in which individuals may feel shame or embarrassment about discussing severe period pain, reinforcing the cycle of silence and delay (Weiss-Wolf, 2017).

The Intersectional Dimension

It is also important to recognise that endometriosis does not affect all individuals equally. Research suggests that marginalised populations, including women of colour, LGBTQ+ individuals, and those from lower socio-economic backgrounds, face additional barriers to care. These groups are often underrepresented in clinical research, leading to further disparities in both diagnosis and access to appropriate treatment (Seear, 2009; Williams et al., 2021).

For example, Black women in particular may face compounding factors such as racial bias in healthcare, cultural taboos, and socio-economic barriers, which result in even longer diagnostic delays and lower access to specialist care (Williams et al., 2021). Addressing these intersecting inequalities requires not only increased funding but also a commitment to equity, diversity, and inclusion within both research and clinical practice.

A Call for Feminist Health Advocacy

Endometriosis should not only be viewed as a medical issue, but as a feminist health issue requiring collective action. Feminist scholars and activists have long argued for the importance of recognising how social, political, and cultural forces shape women’s health experiences (Mishra, 2018). Advocating for improved menstrual health education, dismantling gender biases in healthcare training, and demanding greater government accountability in research funding are essential steps toward redressing these long-standing injustices.

As with many areas of women’s health, real progress will only occur when we challenge the structural and cultural forces that have historically rendered conditions like endometriosis invisible.

Lost Productivity and Economic Costs

Endometriosis also exacts a heavy toll on productivity:

• Absenteeism: Frequent sick days due to pain and fatigue disrupt careers, with many individuals missing weeks of work annually (Benenden Health, 2023).
• Presenteeism: Those who work through the pain often struggle with reduced focus and efficiency, impacting their overall performance.
• Career Limitations: Many individuals feel unable to take on leadership roles or additional responsibilities, leading to missed promotions and professional stagnation.

The estimated economic impact in the EU alone reaches €30 billion annually, highlighting the urgency of addressing this issue (Viganò et al., 2024).

Managing Endometriosis

Although there is no cure, endometriosis can be managed through a combination of approaches:

• Medication: Hormonal therapies such as contraceptive pills or progestin injections help reduce pain and slow tissue growth.
• Surgery: Laparoscopic procedures can remove lesions and improve symptoms in severe cases.
• Support Networks: Organisations like Endometriosis UK provide vital guidance and emotional support for those affected.
• Policy Advocacy: Greater investment in healthcare funding and workplace accommodations is crucial to addressing the broader challenges of the condition (Endometriosis UK, 2024).

The Way Forward

Despite its profound impact, endometriosis remains one of the most underfunded conditions relative to its prevalence (Viganò et al., 2024). Addressing this inequity requires systemic reform:

• Research Investment: Funding must prioritise the development of non-invasive diagnostic tools and innovative treatments.
• Education: Training for healthcare providers can shorten diagnostic delays.
• Public Awareness: Normalising discussions about menstrual health empowers individuals to seek help early.
• Workplace Support: Flexible working arrangements, health accommodations, and awareness training can help affected individuals manage their symptoms without sacrificing career opportunities.

Conclusion

Endometriosis is not just a health condition, it is a societal challenge. Its impact spans physical, emotional, and economic realms, affecting individuals, families, workplaces, and healthcare systems. Yet, despite affecting 200 million people globally, it remains misunderstood and underfunded.

By breaking the silence, prioritising research, and fostering systemic change, we can empower those living with endometriosis and pave the way for better diagnosis, treatment, and support. Addressing this condition is not just about improving health outcomes; it’s about ensuring equity, compassion, and progress for all.

References

• Becker, C.M., Bokor, A., Heikinheimo, O., Horne, A.W., Jansen, F., Kiesel, L., et al. (2021) ‘ESHRE guideline: endometriosis’, Human Reproduction Open, 2022(1), hoac009. doi: 10.1093/hropen/hoac009.
• Benenden Health (2023) Gender Health Gap Report 2023. Available at: https://benenden.co.uk (Accessed: 18 December 2024).
• Endometriosis UK (2024) MPs urge faster diagnosis, better funding and employment law change for those with endometriosis. Available at: https://www.endometriosis-uk.org (Accessed: 18 December 2024).
• The Conversation (2023) Endometriosis takes almost a decade to be diagnosed in the UK—our research has revealed some of the reasons why. Available at: https://theconversation.com (Accessed: 18 December 2024).
• Hoffmann, D.E. and Tarzian, A.J. (2001) ‘The girl who cried pain: a bias against women in the treatment of pain’, The Journal of Law, Medicine & Ethics, 29(1), pp. 13–27.
• Mishra, A. (2018) Feminism and Women’s Health: Empowerment and Agency in Theory and Practice. New York: Routledge.
• Samulowitz, A., Gremyr, I., Eriksson, E. and Hensing, G. (2018) ‘“Brave Men” and “Emotional Women”: a theory-guided literature review on gender bias in healthcare and pain’, International Journal of Equity in Health, 17(1), p. 152.
• Seear, K. (2009) ‘The etiquette of endometriosis: Stigmatisation, menstrual concealment and the diagnostic delay’, Social Science & Medicine, 69(8), pp. 1220–1227.
• Showalter, E. (1997) Hystories: Hysterical Epidemics and Modern Culture. New York: Columbia University Press.
• Viganò, P., Casalechi, M. and Dolmans, M.-M. (2024) “European Union underinvestment in endometriosis research”, Journal of Endometriosis and Uterine Disorders, 5, p. 100058. Available at: https://doi.org/10.1016/j.jeud.2023.100058.
• Weiss-Wolf, J. (2017) Periods Gone Public: Taking a Stand for Menstrual Equity. New York: Arcade Publishing.
• Williams, R.L., Chiu, M.Y.L., De Souza, L.R. and Allaire, C. (2021) ‘Racial disparities in the surgical management of endometriosis: a systematic review’, Journal of Minimally Invasive Gynecology, 28(5), pp. 928–938.
• Zondervan, K.T., Becker, C.M. and Missmer, S.A. (2020) “Endometriosis”, The New England Journal of Medicine, 382(13), pp. 1244–1256.