A Disease Medicine Refuses to See: Endometriosis, Misogyny, and Misguided Research

Writer: Julia Lalla

Editor: Maha Berrada

Endometriosis affects an estimated 1 in 10 women globally and has debilitating symptoms, yet it remains one of the least understood and most underfunded chronic conditions in medicine [3]. However, what happens when the little research that is funded strays from the goal of finding a cure or proper diagnoses? Recent studies have emerged, including Culley et al.’s exploration of how endometriosis affects women’s male partners, and Vercellini et al.’s analysis of how the condition affects women’s attractiveness. These articles have revealed how science continues to divert its gaze away from women’s suffering, and toward the comfort and perception of men, of which the disease does not affect. While women with endometriosis are waiting for a cure, or at least some kind of relief, researchers have been measuring their attractiveness and focusing on the struggles of their male partners. This article examines how endometriosis exposes a deeper bioethical failure: a system that prioritizes appearance and male-centered narratives over the pursuit of medicine and empathy.

What is Endometriosis and Why is it Called the “Missed Disease”?

Endometriosis is a chronic gynecological condition in which excess tissue grows outside of the uterus and often spreads to the outside of other organs; this tissue is similar to the lining of the uterus, called the endometrium. The excess growth of tissue causes a myriad of unpleasant symptoms for women of reproductive age, such as inflammation, scar tissue accumulation, infertility, fatigue, depression, anxiety, chronic pelvic pain, and intense pain during menstruation and sex [6]. It is a very complex disease, with a multitude of theoretical causes ranging from retrograde menstruation, which occurs when menstrual blood flows back into the pelvic cavity and allows endometrial cells to grow, to cellular metaplasia, which occurs when regular cells outside of the uterus follow hormonal signals and differentiate into endometrial cells [6].

Although roughly 190 million women in the world suffer from endometriosis, there is no proven cause or treatment for it, leading to its label of the “missed disease” [3, 6]. Some indirect treatments, like hormonal medicines, are provided to relieve some of the pain, but the most effective are hysterectomies and laparoscopic surgeries, which can cause complications and unpleasant side-effects, such as excess bleeding, infection, or early menopause [1]. In addition to this, no definitive method of diagnosing endometriosis exists, causing these women to suffer from 7 to 10 years before a diagnosis can be reached [6]. Endometriosis research and funding is extremely low compared to other chronic illnesses that also lower the quality of life, such as diabetes. As an example, the National Institute of Health allocated $29 million to endometriosis research, while research for diabetes received $1.2 billion in 2023. This $29 million is only 0.06% of the NIH’s total budget of $47 billion, showing how under prioritized and underfunded endometriosis research truly is [5].

Endometriosis is not just a medical problem, but an ethical problem. It portrays an epistemic injustice, where women’s experiences of pain are systematically dismissed and disbelieved, leading to comments about their pain being exaggerated or psychological [3]. These points reveal an androcentric bias that frames women’s bodies as inherently disordered, leading to the multitude of “missed” diseases that women face, including endometriosis, polycystic ovarian syndrome, and premenstrual dysphoria disorder [3]. The lack of understanding and research of endometriosis exhibits an ethical blindness, causing millions of women to live in excruciating pain daily while the medical world treats it as a trivial, minuscule condition.

When Research Misses the Point

Even when endometriosis research is finally funded, it still ignores the suffering of those experiencing it. In their study titled, “A Qualitative Study of the Impact of Endometriosis on Male Partners,” Culley et al. explored how men suffer due to having partners with endometriosis. The findings of the study concluded that “endometriosis significantly impacts men across several life domains and can negatively impact [their] emotional well-being” [2]. Some factors analyzed were the 22 couples’ sex lives, family planning, and work lives. Overall, the men felt overburdened by the medical costs, the need to comfort their partners, and the extra work to help around the house and to take their partners to medical appointments. They even stated that the male partners felt “marginalized” because the medical system and public discourse of endometriosis focused only on the women, and not the men that have to deal with them. While showing empathy for those who support you while you are dealing with a chronic condition is important, it is a completely and astonishingly different notion to center the male experience around a disease that only impacts those with uteruses. This study exposes a very troubling discovery: women’s agony is only meaningful once compared and related to men’s discomfort.

In the study called “Attractiveness of Women with Rectovaginal Endometriosis: a Case-Control Study” by Vercellini et al., the attractiveness of women with endometriosis and those without it were compared. The study involved men and women judging the appearances of 300 Caucasian women, including 200 women with various types of endometriosis, and 100 women with no endometriosis. While rating them on a 5-point scale, they found that women with rectovaginal endometriosis, which is one of the most severe types, were the most attractive because they had a smaller waist to hip ratio and larger breasts [4]. This study reinforced the idea that female worth is tied to visual appeal, even in the scientific realm. As a result, this study has since been redacted by the authors due to their findings being “misinterpreted” and causing “distress to some people” [4].

Both of these studies are not only tone-deaf, but ethically regressive. They show what happens when medical research follows the misogynistic values of society. Instead of investing in diagnostics and treatments, funding is funneled into benefitting men and reaffirming gender stereotypes. Culley et al. showed how men feel due to women’s suffering and Vercellini et al. showed us how that pain makes women more beautiful. But none of these studies bring the actual women, who have chronic pain, closer to justice and relief.

Looking Towards the Future

Women with endometriosis are not only affected by immense pain, but ethical abandonment by the medical world. While these women are faced with having to experience hysterectomies, losing their careers, and missing out on years of living life with joy, the research community ignores them and highlights the male experience instead. The medical world must look directly at the suffering of those with endometriosis instead of ignoring them like it has for years. The medical world treats the uncertainty of endometriosis rather than trying to understand it. We must question not only why endometriosis remains unsolved, but why it was never truly seen in the first place. Until this medical blindness is confronted, endometriosis will remain as a chronic disease plagued by misunderstanding and excruciating pain. We must remember that the cure begins in listening and having the courage to look where science has long ignored.

References

1. Bahrami, F., Maheux-Lacroix, S., Bougie, O., & Boutin, A. (2023). Complications following surgeries for endometriosis: A systematic review protocol. PloS one, 18(5), e0285929. https://doi.org/10.1371/journal.pone.0285929.

2. Culley, L., Law, C., Hudson, N., Mitchell, H., Denny, E., & Raine-Fenning, N. (2017). A qualitative study of the impact of endometriosis on male partners. Human reproduction (Oxford, England), 32(8), 1667–1673. https://doi.org/10.1093/humrep/dex221.

3. Hudson N. (2021). The missed disease? Endometriosis as an example of 'undone science'. Reproductive biomedicine & society online, 14, 20–27. https://doi.org/10.1016/j.rbms.2021.07.003.

4. Vercellini, P., Buggio, L., Somigliana, E., Barbara, G., Viganò, P., & Fedele, L. (2013). Attractiveness of women with rectovaginal endometriosis: a case-control study. Fertility and sterility, 99(1), 212–218. https://doi.org/10.1016/j.fertnstert.2012.08.039 (Retraction published Fertil Steril. 2020 Nov;114(5):1123. doi: 10.1016/j.fertnstert.2020.09.001.)

5. Wadman, M. (2024, June 10). ‘A Watershed Moment’ for a Shadow Disease: First State-Mandated Endometriosis Biorepository Launches in Connecticut. Science. https://www.science.org/content/article/watershed-moment-shadow-disease-first-state-mandated-endometriosis-biorepository.

6. World Health Organization. (n.d.). Endometriosis. World Health Organization. https://www.who.int/news-room/fact-sheets/detail/endometriosis.