Endometriosis self-management in a gendered healthcare system

The way people respond when I talk about my research on endometriosis always seems gendered. Most, if not all, cis women have a very positive response, expressing excitement at the notion that more funding and research is being dedicated to this condition. In fact, on multiple occasions it’s through this conversation that I have found out that the person I’m speaking to actually has endometriosis. On the other hand, when I speak to cis men about my research, the common response is along the lines of “What is that, again?” Those who do know what endometriosis is have become aware of it because their partner or close family member suffers from it and they have witnessed it first-hand. It’s impossible to ignore the gendered knowledge gap on endometriosis, where men are less informed on the topic. 

Unfortunately, this lack of social awareness is not only present in the public but also in the healthcare system. While health professionals will, of course, be familiar with endometriosis on a basic clinical level, there is still much to be understood about the disease. Diagnostic and therapeutic options are limited, and most health professionals who are not specialised in gynaecology will be familiar only with the very basics of endometriosis. As a consequence, “self-management strategies” have become a key topic for people living with endometriosis. These methods for self-care and treatment at home are born from the necessity to alleviate symptoms while faced with the lack of relevant or supportive medical options. In this piece, I’ll briefly reflect on the concept of “self-management” for endometriosis, often viewed as an empowering tool, and how it exists within a gendered healthcare system. 

Endometriosis is a chronic disease caused by the growth of endometrial-like tissue outside the uterus. This tissue can grow in any area of the body, though is most often found in the pelvis. The body is in a chronic inflammatory state, most often causing pain commonly described as “debilitating”, bowel and urinary disorders, pain during sexual activity, and in some cases, can lead to infertility. This condition impacts the everyday life of people living with it and can significantly decrease overall quality of life.1,2 Despite its high prevalence - approximately 10% of women and people assigned female at birth have endometriosis - endometriosis has been under-researched and underfunded. A wide number of structural factors contribute to a lack of social awareness and underfunding of research on the disease, of which deep seated stigma and shame around menstruation play an important part.

In general, the term “self-management” refers to a greater inclusion of patients in their care journey. The words “empower”, “control” and “confidence” are common within patient advocacy content, while the terms “collaborative relationship”, “support” and “shared responsibility” can often be found in medical academic literature related to self-management. This all sounds rosy, yet I have noticed that in the context of women’s health and reproductive health, particularly regarding endometriosis, the term “self-management” often takes on a different meaning and carries greater weight for the patient than the medical team. 

For people living with endometriosis, “self-management” almost seems to be a synonym for “figuring it out for themselves”. Often, this will mean figuring out how to manage their pain at home, and finding alternative solutions for their discomfort in relation to sexual activity, bowel movements and urinary function, and overall debilitating symptoms. For example, some of the literature on this recommends becoming “endo-literate”, that is, becoming more informed on the condition, or creating a greater support network at home to help deal with challenging experiences3. This seems to be less “collaborative” than self-management for other chronic illnesses, and more burdensome for people living with endometriosis. 

Self-management can become a quick escape route for health professionals to responsibilise patients. Of course, given that there is limited research on the disease, how would medical professionals know how to handle it? For that matter, why is there such little research being carried out on this highly prevalent and impactful disease? If even health professionals feel somewhat in the dark when it comes to endometriosis, how is the general public expected to know about it, unless directly affected? The case of endometriosis and the use of self-management is illustrative of an inherent gender bias within healthcare. Limited understanding of the disease, as well as diagnostic and therapeutic options has led to the need to include self-management as a therapeutic tool, but ultimately that is also a very limited resource, as the understanding of self-management itself is limited. 

In my PhD project, I’ll be speaking to people living with endometriosis and health professionals, to better understand what self-management means to them and how a middle ground can be found. Doctors, nurses and health professionals may want to support patients as much as possible, but they are also subject to the same gendered healthcare system, and not provided with the necessary tools to address gendered diseases adequately. 

I hope to shift this dynamic, so that self-management can actually be supportive tool for people living with endometriosis, rather than a survival response. Maybe by taking these and other steps to address a gendered healthcare system, we can eventually start to reduce the knowledge gap surrounding endometriosis; and maybe one day speaking about endometriosis won’t seem any more obscure than speaking about migraines or asthma. 

Author biog: 

Paula is a PhD candidate at the University of Edinburgh, conducting research on self-management strategies for endometriosis. She is a medical doctor by training, and a global health researcher.   

References:

1.           As-Sanie S, Black R, Giudice LC, et al. Assessing research gaps and unmet needs in endometriosis. American Journal of Obstetrics and Gynecology. 2019;221(2):86-94. doi:10.1016/j.ajog.2019.02.033

2.           Taylor HS, Kotlyar AM, Flores VA. Endometriosis is a chronic systemic disease: clinical challenges and novel innovations. The Lancet. 2021;397(10276):839-852. doi:10.1016/S0140-6736(21)00389-5

3.           O’Hara R, Rowe H, Fisher J. Self-management factors associated with quality of life among women with endometriosis: a cross-sectional Australian survey. Hum Reprod. 2021;36(3):647-655. doi:10.1093/humrep/deaa330