The first time I heard the term ‘endometriosis,’ I was already a decade into my experience with the chronic gynecological disease. Imagine an 11-year-old writhing around on the floor of her parents bedroom, besieged by an all-consuming pain she couldn’t even name. From the moment my uterus began to shed, my life was marked by blinding cramps, intense bloating, and the feeling of being imprisoned inside a hormonal quagmire for a week each month. Like many, I was left in the metaphorical dark for years, caught between dismissive doctors and a lack of understanding, both within myself and the world around me.
For those unfamiliar, endometriosis (or ‘endo’ as it is commonly known) is a chronic condition where tissue similar to the lining of the uterus grows elsewhere inside the body—commonly on the ovaries, fallopian tubes, and other areas within the pelvic cavity, but sometimes as far-flung as the eyes, brain, and kidneys. These tissue growths respond to hormonal changes, causing inflammation, otherworldly pain, and oftentimes scar tissue. For many—present company included—endometriosis is both physically debilitating and psychologically exhausting. It is as devastating and disruptive as it is misunderstood and challenging to diagnose and treat.
Endo affects approximately one in ten uterus-havers. Despite its prevalence, society is only just wising up to its pervasive impact on daily life. Let’s start with pain management. Often dismissed as ‘just period pain’, endo sufferers are left to wonder whether the very real pain they’re experiencing is simply a figment of their imagination. For me, the level of anguish my monthly visitor greeted me with over the years constantly made me question whether I had an astonishingly low pain threshold, which ultimately prevented me from seeking medical help. Instead, I repeatedly assured myself that I was incapable of handling the uncomfortable side effects of a menstrual cycle that has been a fixture of women’s lives since time immemorial.
Endometriosis isn’t just about physical pain; it carries an emotional toll as well. In addition to missing out on school or work, people with endometriosis frequently face deeply embedded scepticism around their lived experience from healthcare providers. Leah Hazard, author of the brilliant Womb: The Inside Story Of Where We All Began, has spoken out on how endometriosis sufferers often face dismissal from the medical establishment. “Women are told to ‘get on with it,’ or it’s dismissed as psychosomatic,” she writes. This lack of validation leads to a self-imposed silence and resignation, as many (rightly) assume their struggles will be dismissed.
As women face a constant barrage of doubt from doctors and society at large, their faith in their own internal experiences crumbles. As Hazard writes, “It’s little wonder… that there is increasingly strong evidence of a relationship between endometriosis and poor mental health. In a 2019 survey of over 13,500 women, co-published by the BBC and Endometriosis UK, 50 percent of women with endometriosis reported suicidal thoughts, and most respondents said that the disease had had an adverse effect on their education, their career, and their relationships.”
In addition to hormonal treatments like birth control, surgery remains the most definitive diagnostic and treatment method to deal with the physical symptoms of endometriosis. This often involves a laparoscopy, a minimally invasive surgery used to identify and remove endometrial tissue growths. However, many individuals undergo multiple surgeries as the condition can recur. Alarmingly, some doctors still suggest pregnancy as a ‘treatment’ option, despite the sobering fact that 30-50% of people with endometriosis experience fertility struggles.
Despite its prevalence, endometriosis research has historically been underfunded and under-researched. According to the National Institutes of Health, funding for endometriosis research has consistently lagged behind that of other conditions affecting fewer people, such as erectile dysfunction. Currently, most treatments for endometriosis involve hormone therapy, pain management, and invasive surgery, with no guarantee of permanent relief. A 2016 study revealed that while 19% of men suffer from erectile dysfunction, which has a wide range of treatment options, around 90% of women deal with premenstrual syndrome, yet research on these issues remains sparse.
If this doesn’t illustrate how endometriosis has been woefully overlooked due to afflicting only those with wombs, consider this: while researching for Womb: The Inside Story Of Where We All Began, Hazard found a staggering disparity in published papers on menstrual effluent (or period blood) versus semen or sperm—400 papers versus 15,000, respectively.
Elsewhere, one of the most promising developments in the field—the ROSE (Research OutSmarts Endometriosis) study, led by Dr. Christine Metz, a prominent researcher and a leading figure in the field of women’s health—was initially met with disdain from the medical community. The breakthrough study aims to create a non-invasive test for diagnosing endometriosis using menstrual effluent. Simply put, women would be able to collect their monthly flow with menstrual cups or special pads, then send these samples to the research center via FedEx. There, clinicians would analyse specific cells in the blood to look for potential markers of endometriosis. This approach could help identify a condition that typically takes seven to ten years to diagnose, eliminating the need for painful and expensive diagnostic surgeries along the way.
You’d think this study proposal would garner unwavering support from the medical community; however, the initial response was met with scepticism: Why would anyone want to examine menstrual tissue? Who would even be willing to collect it? As Hazard succinctly puts it, “The reaction was simply ‘yuck.’”
“When we started promoting our study and trying to recruit women, we found that most physicians were not going to help us,” Dr. Metz explains in the book. “They were very reluctant to talk about the study with their patients. They said, ‘Oh no, my patients aren’t going to give you that effluent [menstrual blood]. No way. They wouldn’t like to do that.’”
Despite facing strong resistance from her peers, women were tripping over the menstrual cups to participate in the study, relieved to finally have a chance to share their stories and contribute to a future where endometriosis diagnostics are both swift and pain-free. This is just one cause for hope in a landscape where endometriosis is finally being recognised and addressed. With a growing community of advocates bringing the condition into the light, individuals are increasingly sharing their experiences—whether in the pages of Vogue, on online forums, or via TikTok reels—refusing to suffer in silence any longer.