A Condition with No Cure. What is Endometriosis?

By Niladri Singh

Endometriosis is a debilitating gynecologic condition and according to the World Health Organization, is a growing global concern that affects roughly 190 million reproductive-aged women. For this reason, it becomes all the more important to be aware of the symptoms of Endometriosis and talk to a professional if necessary.

Currently, there is no known cure for Endometriosis. Diagnosis is difficult because symptoms can mimic other conditions and take 4 to 11 years from the onset of symptoms to diagnose. If found, treatment is usually aimed at controlling or minimizing symptoms.

So, what is Endometriosis?

Endometriosis is a chronic inflammatory condition defined as the presence of endometrial-like tissues outside the uterine cavity. Endometrial tissues form the inner layer of the uterine lining and participate in the functioning of the uterus. The uterine lining is where blood and tissue come from during menstruation.

Each month, these endometrial-like tissues react to the menstrual cycle, building up and breaking down and bleeding. However, unlike the tissues in the womb that leave the body during the menstrual cycle, this blood has no way to escape and leads to inflammation and scar tissue forming in the pelvic region and (rarely) elsewhere in the body.

It is a disease associated with severe, life-impacting pain during periods (also called dysmenorrhea) and has been found to have a considerable impact on women’s lives, with diminished work productivity and quality of life, relating to erratic changes in social, economic, and professional life.

Symptoms

Some people with endometriosis do not have any symptoms. For those who do, a common symptom is debilitating pain in the lower part of the belly (pelvis). Pain can be most noticeable during menstrual cycles, during or after intercourse, and when urinating or defecating.

Other symptoms include chronic pelvic pain, heavy bleeding during periods or between periods, trouble getting pregnant, bloating or nausea, and fatigue during periods. The severity of pain, however, is not a reliable indicator of the extent of one’s condition. This means that someone could have mild endometriosis with severe pain or advanced endometriosis with little or no pain.

It is advised to meet with a doctor if you are experiencing chronic pelvic pain or other symptoms of enometriosis. Emma Cox, CEO of the charity Endometriosis UK said, “In the past, of endometriosis. Emma Cox, CEO of the charity Endometriosis UK said, “In the past, endometriosis symptoms may have been shrugged off as ‘normal’ or ‘not serious’ - these myths are slowly but surely being eradicated, although there is still a long way to go.”

Since symptoms are variable and broad, it is difficult to easily diagnose for both individuals with symptoms or health care workers.

Impact

For all the good it brings, the menstrual cycle is a period that truly tests the physical strength (cis)females hold. Like practice tests before the big final, period pains are infamous for disrupting the normal flow of our daily lives. But pain caused by endometriosis during periods can alter the course of one’s life.

Leah Williamson, captain of the England women’s national football team was diagnosed with endometriosis and revealed how a flare-up of endometriosis nearly ruined her chances of participating in England’s victorious 2020 European Championship campaign.

Padma Lakshmi, the Emmy-nominated actress, founded the Endometriosis Foundation of America in 2009. On her website she says, “I didn’t want the next generation of women to go through what I went through, to feel betrayed by their bodies or to feel alone.”

Data from Endometriosis UK suggests that 49% of the public is aware of endometriosis, a figure that drops to just 31% in men.

Speaking to Women’s Health, Faye Farthing, Campaigns and Communications Manager for Endometriosis UK said, “Myths in our society about endometriosis are rife - women are often on the receiving end of comments like “It's just a bad period, get on with it.”

A feeling shared by actress Emma Roberts had debilitating cramps and periods, which caused her to miss school and cancel meetings. She said, “ I mentioned this to my doctor, who didn’t look into it and sent me on my way because maybe I was being dramatic?” She had dealt with the symptoms since she was a teenager but didn’t receive a diagnosis until her late 20s, at which point the condition had already affected her fertility, leading her to freeze her eggs.

The Way Forward

Although a cure has not been found for endometriosis, there are more and more women talking about it and shedding light on the matter. In March 2023, Spain became the first European country to approve the bill for paid ‘menstrual leave’, a policy that has caused a widespread debate on whether it will benefit or hinder women at work.

It has been found that endometriosis remains underfunded and therefore, under-researched. According to Emma Cox, Chief Executive of Endometriosis UK, the National Institute for Health Research has funded more than 8,000 projects since its inception in 2006, only 11 of which addressed endometriosis.

Prof.Phillippa Saunders, chair of reproductive steroids at the University of Edinburgh, aims to study the early development of the disease, hoping to find indicators of endometriosis in blood. She said, “This progress was only possible because of increased pressure from patient groups who have been much more vocal over the last few years, working with clinical professionals to lobby funders.”

In March 2023, researchers at the University of Oxford in collaboration with 25 teams across the world published the largest study to date of the genetic basis of endometriosis. The study revealed a shared genetic basis for endo and a range of other chronic pain types, such as migraine, back pain, and multi-site pain. This could be related to the so-called sensitization of the central nervous system, which makes individuals suffering from chronic pain more prone to other types of pain.

Findings like these can help the research community in their efforts to come up with new treatments and possibly new ways of diagnosing the disease. There is a need, now more than ever, for more research in the field of endometriosis. And as the research grows, so will our awareness and knowledge of the matter, which in turn will benefit women (and men) worldwide.