Why Is Endometriosis The “Missed Disease”?

What is endometriosis?

Endometriosis is a disease in which tissue like that lining the uterus – known as the endometrium – grows outside of the uterus, often in areas in the pelvis and abdomen, like the ovaries, fallopian tubes, and lining of the pelvic cavity. What exactly causes this to happen is unknown.

The endometrial tissue outside the uterus responds to the same hormones that regulate the menstrual cycle, but unlike the uterine lining, this stuff sticks around in the body, and can lead to inflammation, scarring, and an accumulation of tissue that causes organs to “stick” together.

Although it can vary between people, this inflammation and damage can lead to symptoms involving a lot of pain: painful periods, bowel movements, peeing, and sex, as well as pelvic pain. Other common symptoms include heavy bleeding during periods, difficulty getting pregnant, and fatigue.

These symptoms, along with physical exams to look for signs of endometriosis, might be used in the process of diagnosis, but the only surefire way to diagnose the condition is with surgery. This involves inserting a camera into the pelvis via a small cut in the abdomen, and looking for signs of the disease.

There’s no cure for endometriosis, but surgery might be used as a treatment, as well as painkillers and hormonal medications.

“Underfunded and underresearched”

Endometriosis is estimated to affect around 10 percent of all females of reproductive age, and as the symptoms described above indicate, it can be incredibly debilitating – so why do we know so little about it?

“Despite its high prevalence and cost, endometriosis remains underfunded and underresearched.” That was the conclusion made by an interdisciplinary group of experts when they reviewed the state of the science on endometriosis back in 2019.

The situation hasn’t changed all that much since then. The National Institutes for Health (NIH) put $29 million of funding into endometriosis research in 2023, over double the amount of funding assigned in 2019 – but it represents just under 0.06 percent of the NIH’s $49.183 billion 2023 budget.

This lack of funding, and subsequent lack of research is “greatly limiting our understanding of the disease and slowing much-needed innovation in diagnostic and treatment options,” write the authors of the 2019 review.

And they’re not wrong; compared to other diseases that also affect millions of people, we know very little about endometriosis.

“We don’t know how it starts or why it creates pain in some people and not others. We don’t know why it grows fast in some people and more slowly in others,” explained gynecological surgeon Dr Louise King in a news article from Mass General Brigham.

And that absence of knowledge has a number of knock-on effects.

A lack of understanding

According to a 2020 study by health communication researchers Allyson Bontempo and Lisa Mikesell, it takes a reported average of 8.6 years to receive a diagnosis for the condition. While a lack of research into diagnostic methods and the complexity of the disease might play a part in this timeframe, they are far from the only reasons.

Endometriosis is more than just painful periods, but its association with the menstrual cycle means that the pain people experience can often be dismissed as “normal”, both by healthcare professionals and society.

This can start from a young age; a 2009 study of 4,334 women who reported having surgically diagnosed endometriosis found that those who first experienced symptoms during their adolescence were “far more likely” than those with adulthood onset of symptoms to report being told that nothing was wrong.

The overall picture isn’t great regardless of age either, with 59.6 percent of people reporting that their physicians didn’t take them seriously.

This can also mean that people are misdiagnosed with other conditions along the way; Bontempo and Mikesell found that out of the 758 people in their study diagnosed with endometriosis, 75.2 percent were first misdiagnosed with another physical and/or mental health problem.

Even if people are diagnosed, that doesn’t guarantee that they’ll suddenly be taken seriously or given the right advice. For example, a study published in 2023 found that over half of the 3,347 people with endometriosis surveyed had been told to try and get pregnant as a treatment, despite no evidence that such an approach works.

What can be done to make a difference?

Given that it affects so many people and can significantly reduce their quality of life, it seems about time that endometriosis is given the attention and awareness it rightly deserves – but how can we make that happen?

“Endometriosis places a significant burden on teens and adult women, their families, and society as a whole, yet the stigma surrounding the disease and societal normalization of women’s pain continue to preclude fast and accurate diagnosis, effective treatment, and innovation in the field,” write the authors of the 2019 expert review.

They argue for “comprehensive and interdisciplinary approaches that take patients’ holistic needs into account”, as well as more research, and public health campaigns to help increase awareness and reduce stigma.

Similarly, medical anthropologist Annalise Weckesser writes in a piece for The Conversation that “[t]aking endometriosis sufferers’ accounts seriously is the linchpin to improving care.”

“For the long-overdue improvements to endometriosis treatment, diagnosis and care to happen, we need to believe and prioritise the words of endometriosis sufferers. Greater awareness and understanding of the condition will help.”

All “explainer” articles are confirmed by fact checkers to be correct at time of publishing. Text, images, and links may be edited, removed, or added to at a later date to keep information current.

The content of this article is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of qualified health providers with questions you may have regarding medical conditions.