Illustration © Sneha Khedkar
- Endometriosis is a condition where tissue similar to the inner lining of the uterus starts growing outside the uterus, where it can often form painful cysts.
- The average time women have to wait for a diagnosis is 6.7 years. This prolongs their suffering, which often culminates in patients facing mental health issues.
- There are many factors contributing to this delayed diagnosis, starting with the difficulty of diagnosis.
- Aside from bias in medical research, it is also not uncommon for women’s pain to be taken less seriously than that of their male counterparts.
In the last week of January this year, endometriosis community pages on social networking sites were abuzz with the photo of a woman holding white flowers, with the caption “RIP Aubrion Rogers”. Aubrion Rogers was a 30-year-old endometriosis awareness campaigner who had been diagnosed with the condition in August 2020.
The endometriosis community had lost an ‘endo warrior’ to the disease, a reminder that it can be fatal if left untreated.
Endometriosis is a condition where tissue similar to the inner lining of the uterus starts growing outside the uterus, where it can often form painful cysts. Endometriosis cysts and lesions have been found on pelvic organs like ovaries, rectum and the vagina, and in rare cases on extra-pelvic sites like the lungs as well.
This creates an inflammatory environment that may result in the formation of scar tissue, eventually causing pelvic organs to stick together. The symptoms include, but are not limited to, debilitating pain during menstruation, painful bowel movements, pain during urination, pain during sexual intercourse and fatigue. It is also associated with increased risk of infertility.
Unfortunately, there is no treatment for endometriosis. Though symptoms can be managed with hormone therapy, they are commonly known to have problematic side effects. Endometriosis lesions have to be surgically removed, but risk of relapse can’t be ruled out.
Current data indicates that endometriosis affects a whopping 10-15% of all menstruators. This number could potentially be much higher due to the number of patients that go undiagnosed. Despite such a high prevalence, the average time women have to wait for a diagnosis is 6.7 years. This prolongs their suffering, which often culminates in patients facing mental health issues.
There are many factors contributing to this delay in diagnosis, starting with the difficulty of diagnosis. There are no blood tests available to diagnose this condition. Doctors can diagnose one with endometriosis on the basis of their symptoms, but definitive diagnosis requires surgery. Endometriosis is often misdiagnosed for other conditions like irritable bowel syndrome or appendicitis, due to their similar symptoms.
Indeed, one of the main reasons why women’s health related issues are misdiagnosed is the lack of research using female animal models. Historically, male animals have been used more than females as they were thought to be less variable due to the absence of monthly hormonal cycles. This resulted in most research being skewed in favour of male subjects.
For issues specific to the female body, research groups are still grappling with the best-fit mammalian model to carry out studies in. Aside from bias in medical research, it is not uncommon for women’s pain to be taken less seriously than that of their male counterparts. This can be traced back to a history of women being labelled ‘hysterical’ if they complained of pain when its cause wasn’t obvious at first glance.
First indicated in ancient Greek texts, ‘wandering womb’ was the belief that a displaced uterus was the cause of pain from strange, apparently invisible sickness. This gave birth to the idea of ‘hysteria’ as a mental disorder, which set the stage for modern-day women being told that their seemingly invisible pain was “in their heads”.
As a result of this, it is not uncommon for women’s pain to be trivialised or dismissed. In fact, ‘gender pain gap’ is a term coined to address the discrimination in healthcare where unconscious bias leads to women’s pain being cast as a matter of little importance.
Aubrion Rogers was a victim of this. She had been sharing details of her struggle online with other sufferers. In her posts from last year, she had expressed frustration that her pain was not being taken seriously. An ultrasound (that she demanded) revealed that she had three fibroids, one cyst, one enlarged ovary and one large mass that was 11 cm (according to one Instagram user).
Despite this discovery, she was asked to go home. In the last week of January this year, her husband took to social media to inform her followers that she had been taken to emergency surgery to remove a burst ovary and endometriomas. Sadly, she passed away in recovery. If she had been given the correct treatment sooner, she could have survived.
Also read: One Woman’s Encounter with #MeToo in the Medical System
This kind of medical gaslighting is prominent worldwide and many endometriosis patients are victims of this. In addition, in a country like India, where discussions surrounding menstruation are still taboo and period pain is normalised, awareness about endometriosis remains scarce. An estimated 42 million Indians suffer from this condition.
Despite the obviously high prevalence of endometriosis, many people are not likely to have ever heard about it. One of the main reasons for this is that women are expected to suffer silently, especially when the pain is related to their menstrual cycles. This delays diagnosis as well as discourages diagnosed women from speaking up about their experiences.
Some people may believe this problem is specific to rural areas, because urban areas have left behind ‘archaic notions’ surrounding menstruation. However, ask any woman in metropolitan cities about her experiences regarding her diagnosis and you are likely to be corrected.
As a sufferer of endometriosis, it took me almost five years to receive a correct diagnosis. While some doctors invalidated my pain, others advised me to “get married” and “have children” to deal with it. To most people’s surprise, I had these experiences in cities like Mumbai and Bangalore.
However, it’s not all bad news. There has been growing interest around endometriosis research. A quick search on the most popular biomedical research archive, PubMed, shows a steadily rising number of studies on endometriosis over the last few years. The late 1990s and early 2000s had only around 500 articles each year. This number has significantly increased, with over 2,000 articles in 2021 alone.
With research expanding the understanding of the disease, more and more hospitals are using a multi-disciplinary approach to resolve endometriosis. There are some centres dedicated to endometriosis that employ doctors with fellowships in endometriosis surgeries. With advanced infrastructure, endometriosis surgeries can now be carried out in a minimally invasive manner as well.
The two major reasons endometriosis goes unnoticed are lack of awareness and difficulty of diagnosing the condition. With advancements in the medical field, there have been small but consistent efforts to address the latter. But communication of female-specific diseases like endometriosis is still limited. We may have surpassed the era of the ‘wandering womb’ but there is still a long way to go.
Sneha Khedkar is pursuing a PhD in biological sciences at the Institute for Stem Cell Science and Regenerative Medicine (inStem), Bengaluru.