An Illness Silenced: The Systemic Neglect of Endometriosis.

For decades, women have dealt with a harrowing condition called endometriosis, a painful, often debilitating condition where tissue similar to the uterine lining grows outside the uterus. Even though it affects almost 1 in 10 women of reproductive age, there is barely any research done, and treatments remain shamefully underfunded, underprioritized, and misunderstood. It is no secret that women have been treated as an afterthought in most places in society, but this shows us how the neglect of endometriosis research reflects a broader, systemic bias in medical science, one where women’s pain is neglected and normalized.

Women were only legally required to be in clinical trials since 1990, but the many years women were excluded from the trials mean that there is still so much we don’t know. Females were largely excluded from clinical trials because of their menstrual cycle. While males produce the same sex steroid hormones, female hormone levels fluctuate. Fluctuating hormone levels make data interpretation challenging, resulting in more variable outcomes and increased research costs. This means that if the research was done using male rats or mice, there is no saying how it will affect women’s bodies and hormones. This can impact brain function and behaviour, as well as the female response to medication, for example, alzheimers disease, which has been historically underfunded and under researched for years despite it’s massive impact.

Cultural taboos around menstruation have made menstrual health a “quiet” topic, and since endometriosis is connected to the menstrual cycle, it has been treated as period pain instead of a chronic and systemic disease. It takes an average of 7-10 years for endometriosis to be diagnosed, and in most cases, women have been told that their pain is just bad cramps or stress or “in their head”. This kind of normalization of women’s health discourages doctors and research institutions from escalating their investigations.

Medical schools often spend very little time teaching about endometriosis compared to other conditions, which leads to most gynecologists and general practitioners missing or misinterpreting the symptoms. The public awareness surrounding this disease is also concerningly low and not openly discussed, similar to diseases like breast cancer, so there is very little pressure for funding. 

Endometriosis is biologically complex and poorly understood. It can appear in different parts of the body and not only in the uterus. It behaves differently in different people, and since there is no single cure for it, there is no way for pharmaceuticals to monetize out of it; therefore, the research funding remains very low. According to a 2023 survey, global R&D investment for endometriosis was US $28 million. Poor funding indicates that fewer new diagnostics, treatments, less research and extensive delays in diagnosis mean many women suffer pain, infertility, lower quality of life, and incur higher health costs. 

Imagine if 1 in 10 men lived with crippling pelvic pain, missing school, work, and opportunities because of it. Do you think the condition would still be treated with the same ignorance? Would it still take 7 years to get a diagnosis?

Would there still be so little funding and awareness? Probably not. Endometriosis isn’t just a female health issue; it is a harsh reminder of how society neglects women’s sufferings. The fact that there is still no cure for endometriosis isn’t a failure of science; it’s a failure of priorities. To fix this, we require better policies, inclusive research funding, improved medical education, and louder public pressure and advocacy.

Endometriosis isn’t rare or invisible; it is simply silenced, and it will continue to be until the day that women’s health is considered as human health. Until then, millions around the world will keep living unheard and untreated. The ability for science to intervene exists, but empathy and willpower do not