What is endometriosis?

According to the World Health Organization, official designation, endometriosis is “a chronic disease and symptoms include severe pain during menstruation; heavy menstrual bleeding; chronic pelvic pain (pain that does not go away when the menstrual cycle ends); infertility; and abdominal bloating and nausea.” It is officially considered to affect an estimated 10% (190 million) of reproductive-aged women worldwide, causing significant discomfort in daily life for many, since the start of their menstruation.

Lived experience and invisible suffering

“It all began when I had my first period at 12. From that point on, I realized I was experiencing excruciating pain, and it was also different for me than for everyone else because my pain was consistently more severe. When my friends and I had our first sexual experiences, they found pleasure in it, but for me, it was agonizing due to the pain,” says 28-year-old Sophie, an endometriosis patient from Wolfsburg diagnosed in 2020.

This testimony is not an isolated case but reflects a recurring pattern among endometriosis patients: early onset of pain, normalization by the social environment, and delayed medical recognition. However, despite its high prevalence and debilitating consequences, endometriosis remains underdiagnosed, misunderstood, and insufficiently treated. But why?

Medical normalization and structural misogyny

Historically, women’s pain has been trivialized or normalized within medical and social frameworks. Menstrual pain has long been considered a natural and inevitable aspect of womanhood rather than a potential symptom of pathology. Thus, Women reporting severe pain are frequently told that their symptoms are “normal,” or exaggerated, reflecting gender biases in medicine, where male bodies have traditionally served as the biomedical norm. 

So, yes, misogyny persists in the Hippocratic ideal of unbiased medicine as well. A report by the Women and Equalities Committee shows that gynecological conditions have been treated with a significant “pervasive stigma,” a lack of education among healthcare professionals, and “medical misogyny.”

In an interview on the Canadian Women’s Foundation Podcast Alright, Now What?, the author of the bestselling book BLEED: Destroying Myths and Misogyny in Endometriosis Care, Tracey Lindeman, addresses the “social determinants of health” defined by WHO as a “non-medical factors that influence health outcomes”, referring to lack of awareness among the public as fundamental evidence. 

Lindeman emphasizes that ignorance surrounding the disease is not accidental but socially produced: “We know how many people have prostate cancer. We know how many people, you know, have breast cancer. So, why don’t we know this?”

Talking with numbers, a Danish investigation demonstrates that when comparing the total grant-awarded endometriosis research projects (173,958 EUR) with those on diabetes (254,908,430 EUR) and inflammatory bowel disease (325,940 EUR), endometriosis remains severely underfunded. This financial neglect illustrates how institutional priorities continue to marginalize women’s health issues.

Ultimately, recognizing endometriosis as a social issue invites a broader reflection on how societies listen to women’s pain. It calls for a re-evaluation of medical practices, research priorities, and social norms that continue to marginalize gendered suffering. Addressing it effectively requires not only biomedical innovation but also structural change: better education, equitable healthcare access, workplace recognition, and a cultural shift that takes women’s pain seriously. Only then can endometriosis be understood not as a silent burden borne by individuals, but as a shared social responsibility.

By Marianthi DIMOU 

To go further on our dossier of the month dedicated to the body, consult the articles of our sections culture and internationals relations on our blog.

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