I was diagnosed with endometriosis around this time seven years ago when I had just turned 18. Throughout the years, I have gone through most stages of grief about my pain and my treatment, and I have written many articles and stories about it at different points in my life. This is the first one I’m writing from the point of acceptance.
It took me 5 years to receive adequate care after I was diagnosed. Honestly, I was lucky. According to the World Health Organisation (WHO), endometriosis affects around 10% (190 million) of people who are born biologically female around the world. No one knows the cause, and no one knows the cure. If we were to create “Endometriosisland”, it would be the eighth biggest country in the world in population (sorry, Bangladesh). Despite how common it is, endometriosis is severely underdiagnosed, mostly because its main symptom is generic: pain, especially during menstruation and sexual intercourse (two very taboo topics).
This creates two kinds of delays in the diagnostic process, as described by Dr. Lorraine Culley and her colleagues in The social and psychological impact of endometriosis on women’s lives: a critical narrative review. The first kind is a delay for the patients themselves to seek help, as they are plagued by the idea—reinforced by the social and shameful discourse around periods—that enduring period cramps is normal. That feeling pain is normal. Suffering, the patriarchy tells us, is an essential part of “being a woman”. It is Eve’s burden for having seduced Adam into eating the forbidden fruit, and it is reflected in every moment of female life: shaving, high heels, piercing a baby’s ears (a universally disturbing female experience for Latinas), and—the original burden—childbirth.
The second delay in diagnosis is clinical. When someone seen as female goes to the doctor (not always, by the way, because of a specific concern; endometriosis is frequently discovered during normal “check-ups”), academic research shows that they are often met with resistance and discredited. When they go to a general practitioner, frequently they are not even forwarded to a gynaecologist. These patients suffer from “daily insecurities,” as Wenham words it, when describing the necessity of recognising the influence of structural gender-based violence in healthcare public policy.
When I was 21 years old, having been already diagnosed, a gynaecologist looked deep into my eyes and told me that feeling pain was normal. I remember feeling so angry, betrayed, and ignored. In my case, my doctor kept telling me I was getting better because my ovarian cysts were getting smaller. However, my symptoms—my pain—was getting bigger. He didn’t listen, and even suggested in the most clinical way possible that maybe my sex life was “rough”. I felt ashamed and never told anyone. It turned out my cysts were spreading farther than the ultrasound could catch.
I don’t want to reduce this to one doctor. I went to literally dozens of doctors over the years, and it was difficult as a young woman to find the strength to keep advocating for myself. When I was 19, a contraceptive pill gave me depression symptoms, and my doctor’s recommendation was to keep taking it. A different doctor told me that it was ok to remove one of my ovaries because “I had another one”. I spent years wishing I had asked him how he would feel about having one of his balls removed.
Associate Professor of Global Health Policy at the London School of Economics Dr. Claire Wenham describes this experience in Feminist Global Health Security, where she writes that global discussions fall into the trap of equalising gender-related health experiences with reproductive health. For Dr. Wenham, paternalistic assumptions are often made about women, reducing them to their biological functions and, fundamentally, obscuring gender-based inequality in healthcare. This is what hurt me the most—I felt like what medicine was protecting was my possible future child, not me. That I didn’t have intrinsic value as a person.
Not much changed when I received a diagnosis. There is one main treatment: not having your period. Endometriosis is caused by parts of the endometrial tissue coming out of the uterus and spreading, especially to the ovaries and the outside of the uterus, and it can also impact organs such as the bladder and intestine. There is a real risk of infertility—both from the haemorrhagic cysts themselves joining ligaments and blocking the path of the egg, for example, as well as from the possible need for radical sterilising surgery if they spread too far.
The cyst formation process occurs during menstruation, so preventing it is understood as essential. This is where contraceptives come in, and with them, another myriad of problems. The creation of the pill was a sexual and social revolution, giving women freedom over their bodies. For me, it often felt like a prison. In the same way that endometriosis and other diseases linked to women have very little investment in research, treatments, and exams suffer the same fate. We all remember the male contraceptive pill that was discarded because of side effects, while female contraceptives have a proven increased risk of thrombosis (among other problems), and this is simply normalised.
As demonstrated by Sarah E. Davies and her colleagues in Why it must be a feminist global health agenda, gender inequality is often informal and private. Formal and informal changes are needed in the institutions of global health governance so that research and methodologies are feminist, going beyond positivist methods and thinking about ethnography, participatory observation, and, not least, opening spaces for people’s stories to be heard.
I was finally heard when I was 23. I had been trying to get my cysts surgically removed for years but had not found the right combination of doctor and insurance. Finally, a (male!) doctor focused my care on my quality of life and well-being. He mentioned life improvements that I hadn’t even considered, like my ability to participate in sports. He gave me a timeline of how I would feel and what I could do, and he gave me options. I cried like a baby when I left his office. He saw the value in me that I saw all along, that I was fighting for since I was a scared, confused, and really angry 18-year-old.
I went through surgery (no ovaries were removed in the process, thank you) and am now officially free of endometriosis. Though it can always come back, so check-ups are crucial. This journey showed me how health is an essential sphere for achieving true gender equality. From access to healthcare (one in four women in Brazil, where I’m from, has missed school because they didn’t have a tampon) to the quality of such healthcare, which goes beyond economic issues (men are paid over 25% more than women, while formal employment is still the exception among transgender people) and education inequalities, governments need to take women’s lives seriously. And not just as an instrument for reproduction, but as a human being with a life and ambitions of her own. As a person worthy of quality of life, not just survival. Worthy of being healthy, not just free of disease.
Free, healthy, and in control of her own body. I just got the news this week that I now have a job in promoting and defending sexual and reproductive rights. I see that as part of this journey. The road is long, but we are strong. Sometimes it gets tiring, but we are. We are strong.