Many of us have periods, and many of us are in pain during at least a couple of those days every month. Recently, there has been a new narrative on social media about how intense period pain is not normal. For many of us who have grown up in a society where being a female equated with living with a certain level of pain, this can be a bit of a wake-up call.
Some of you may have seen information going around in the last year about endometriosis and related pains. For those of you who haven’t, endometriosis is a gynecological issue that affects about 1 in 10 menstruating persons. Cells similar to those inside the uterus are found outside of it, usually in the pelvic floor cavity. The cells react to changes in hormones, particularly estrogen, causing swelling and inflammation. This can be very painful and affect the quality of life of the person. Unfortunately, there hasn’t been enough research done about endometriosis and there is currently no cure for it. The history of research on endometriosis is a confusing and stigmatized one.
The medical system is a patriarchal one, leaving women at the margins of medical improvements. I was barely 18 when I started my journey toward diagnosis. It is a frustrating journey of advocating for oneself to doctors who do not believe your level of pain is abnormal. The first time, I spent 10 hours at the emergency room to be given paracetamol and sent home. The second time, I had waited 6 hours for a nurse to disregard my pain and possible endometriosis in favor of a pregnancy test. I had to be crying on the floor of the emergency room for anyone to offer me painkillers. I felt crazy for being in pain and like it was my responsibility to power through. Unfortunately, I am not alone in feeling let down by a system that should be trying to help me, it is a shared experience of many persons with uteruses through time and space.
The foundations on which endometriosis diagnoses is laid is one created in a political and social context that does not take women’s accounts seriously. Opinions differ on how new the disease is. An interesting position has appeared in the field, arguing endometriosis is not a new disease and has been chronically misdiagnosed. Some researchers argue that early cases of Hysteria might have been undiagnosed endometriosis[i]. This position is interesting when examining today’s medical discourse and how prevalent claims of ‘over-exaggeration’ and ‘psychosomatic pains’ still is in medical discourses. I know that before going to see any doctor, I take some time to create a game plan. Research the doctor to try understanding how I must act and present to get my symptoms taken seriously. I had hope that having female doctors would mean not having to be on edge during the whole appointment and defending my pain. Unfortunately, the sex of the doctor did not change much to the direction of the appointment, and I realized that it was the foundations and stereotypes behind endometriosis that I had to fight against. I had to present my case like in a court of law.
Others argue the disease is new, with much of the research being done in the 19th century. Endometriosis quickly became branded the ‘career-woman’s disease’ and the profile associated with this image continue to be destructive today. Endometriosis was the white, middle-class, career-oriented woman’s disease. This creation of the typical patient profile correlates with views of pregnancy as a social obligation. Women who had endometriosis were the ones who did not prioritize family and were being punished for it[ii]. The legacy of this discourse continues today. People still commonly think of pregnancy as the cure for endometriosis. This way of thinking judges people with uteruses who do not want to have kids and those who cannot have kids. Fertility seems to be valued above the quality of life of the person affected.
It is time to call out these antiquated views associated with endometriosis and urge the medical system to review its patriarchal foundations. We need to create a system that works for the people, not against them. My journey toward diagnosis opened my eyes on how patriarchal the medical system is and how many people are suffering because of it. I decided to create a podcast to be able to educate people about the struggles of an under-researched condition, Floor Time with Ace[iii]. The flaws in the system need to be called out to be reformed.
[i] Nezhat, C., Nezhat, F., Nezhat, C.H. (2020). Endometriosis: Ancient Disease, Ancient Treatments. In: Nezhat, C.H. (eds) Endometriosis in Adolescents. Springer, Cham. https://doi.org/10.1007/978-3-030-52984-0_2
[ii] Seear, Kate. (2014). The makings of a modern epidemic: Endometriosis, gender and politics. The Makings of a Modern Epidemic: Endometriosis, Gender and Politics. 1-196.
[iii] Floor Time with Ace, available on Spotify
~ Ace De Baets