Between Helping and Harming: Diagnosing Medical Violence in the Case of Endometriosis

Introduction Methodology

and Data Analysis Patriarchal Medical Violence Analysis Creating and Normalising Ignorance and Invisibility I wished to know the details of this disease, its symptoms, and life with it, so I went to my long-time gynaecologist who, after all these years, only noticed I had endometriosis then. His attitude towards the diagnosis was as if we were talking about cars. He said that this is just something one every ten women in Slovenia has and that it's nothing to be alarmed about. (Jana; Endozavest, 2021) I had severe pain during menstruation since I was 15 years old. One day during class, my pain got so bad that I ended up in the emergency room. I was 18 years old at the time. I was diagnosed with appendicitis. After a few years, I learned that this is a common diagnosis mistake patients with endometriosis face. I have just been diagnosed with endometriosis at the age of 31, when my partner and I were directed to an infertility clinic due to repeated unsuccessful attempts to conceive. Inappropriate Diagnostics and Treatments I am 25 years old and I have been dealing with severe menstrual pain for the last 10 years. Over the years, the pain gradually worsened, so painkillers no longer helped. I have been to gynaecologists many times, and they said that the sooner I will accept the pain, the better it will be for me. And that I obviously have a low pain threshold. But it never seemed normal to me that I couldńt do anything for the first two days of my period, that I was writhing on the bed in pain, crying and waiting for the pain to pass. Her [the gynaecologist's] comments: that I got the cyst because I stopped taking the pills, that only this can treat hormonal imbalance, that I have to start taking the pills again. She answered some of my questions by saying that I’m not taking the situation seriously at all, that I should already have children, etc. She began listing how many months, how many years I’ll lose in waiting lists and infertility processes, artificial insemination… And finally, that I should already decide whether to give me a prescription or not, because I’m making them skip lunch. In short, inhumane and unprofessional. The ethnographic evidence suggests that endometriosis is generally not regarded as a serious medical condition unless it threatens a woman's reproductive capacity. The involvement of non-reproductive organs such as the ureter, appendix, or lungs (Nezhat et al., 2025, p. 2) is frequently overlooked because the related symptoms are not directly linked to infertility. In some cases, physicians even admit to downplaying the severity of such manifestations to avoid making the disease appear “too scary” (Shohat, 1992, p. 66). This reflects a medical paradigm that prioritises heterosexual and reproductive matrix, assuming this is what women need (Young et al., 2018). Of course, many patients prioritise other concerns, most notably pain management and quality of life (Young et al., 2016). It is worth repeating that no clinical evidence supports pregnancy as a cure for endometriosis. Pregnancy and motherhood neither prevent the disease nor slow down its progress (Sirohi et al., 2023; Leeners et al., 2018). Moreover, endometriosis is associated with infertility, miscarriage, possible complications, and ectopic pregnancy (Guidone, 2020, p. 271). In short, the medical management of endometriosis is often shaped by a thinly veiled demographic agenda.I started taking pills every day in the morning and at night, after six months the situation was not good, I was still in pain, every time I saw them, they answered: you are not well, it would be best for you to get pregnant… At the age of 24, with an irregular job, on a contract, living in a one-room flat, a partner who was not serious or mature enough to have a child… He didn’t even support me or stand by me in this pain … (Urška; Endozavest, 2017) Discursive Violence Using language that mythologizes endometriosis, doctors become heroes trying valiantly to decode the mysteries of the disease, rogue endometrial cells act as the villains who cause the trauma, while the uterus plays the part of the suspect, and women its pitiful victims. Treating endometriosis as a mythical narrative directs attention away from problems with the medical construction of the disease and the social implications of the disease, instead blaming the condition itself for being difficult and, by extension, women who have it. Physical Violence My difficulties got worse and worse each year. I was in more and more pain, my period longer and longer. At first, I was bleeding for ten days in a row, then for two weeks. Only after a long time, after I went to the ER several times, and after I bled for two months, did I receive a proper examination. It was followed by an operation, but they were too late. If they acted sooner and if they started treating me seriously earlier, I wouldn’t have lost one ovary. I was being diagnosed for 10 long years. During this time, it spread around and attached to many of my organs, causing debilitating chronic pain and symptoms that forced me to quit my job as a nurse. I lost a lot of confidence, I was very lonely, and I felt like I was starting to lose myself. It shouldn’t take so long to get a diagnosis, we need more support in dealing with this cruel disease. (Eva; Endozavest, 2022)

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