Suspected endometriosis: A scoping critical intersectional review of medical literature


Elizabeth Cameron, Queen's University

Endometriosis is a chronic disease that affects up to 15 percent of women and unknown numbers of gender-diverse people globally (CMAJ 2023). The condition causes pain and symptoms that disrupt important bodily functions including enjoying sexual pleasure, movement during normal daily activities, menstruation, and pregnancy. Common comorbidities include anxiety, depression, fatigue, and gastrointestinal conditions, along with high rates of infertility (CMAJ 2023). Endometriosis’ status as a feminized, gendered disability (Jones 2021) has obscured the disease from medical and social scopes of concern, resulting in a prolonged lack of funding being directed towards understanding the condition or improving treatment for those affected (Ellis et al. 2022). Presently, those with endometriosis symptoms wait an average of 4-12 years to receive a definitive diagnosis, as this can only be confirmed through surgical intervention which allows the disease’s presence to be visually observed (Agarwal et al. 2019). In Canada, the average delay between symptom onset and a confirmed endometriosis diagnosis is 5.4 years (Singh et al. 2020). During this period, people with endometriosis continue to experience painful, uncomfortable symptoms without sufficient explanation or relief. Clinical diagnosis of endometriosis – when a physician suspects someone has the disease based on non-surgical evaluations and symptom history – is increasingly encouraged in Canada and the U.S. in order to reduce the diagnostic delay, and circumvent problems arising from the reliance on a surgical diagnostic method, which is invasive and can be sterilizing (Agarwal et al. 2019; CMAJ 2023). However, people with suspected endometriosis – those who have not had the diagnosis confirmed through surgery – are yet to be considered as a population with unique care needs, experiences, or desires. This paper draws from my SSHRC CGS-M supported master’s thesis research, which is the first academic contribution in the social sciences to consider suspected endometriosis in particular. First, a scoping review of suspected endometriosis’ construction as a diagnostic category in medical literature is described. I then reframe this medical literature through a critical intersectional health studies perspective, finding that a lack of medical knowledge and care concerning those with suspected endometriosis produces racialized, gendered diagnostic outcomes which serve in colonial, patriarchal projects of ableism and cis-heteronormativity. People with suspected endometriosis are conceptualized as a heterogeneous epistemological community (Whelan 2007) which experiences systemic inequities due to the intersecting oppressions which underpin endometriosis care. Finally, the emergent implications for improving care for people with suspected endometriosis are considered. This project responds to intensifying calls for research which places a long-overdue emphasis on feminized experiences of illness, and in particular, those with endometriosis (Ellis et al. 2022; Agarwal et al. 2019; Jones 2016). Critical, intersectional, qualitative research is urgently needed in order to develop more relevant, accessible, and effective care systems for those affected by this devastating chronic illness (Wahl et al. 2021). In 2023, Health Canada announced over $1.6 million in funding to improve sexual and reproductive services for people living with endometriosis, further highlighting the crucial need to expand care for those with this condition. Thus, this research contributes intersectional knowledge to be used as evidence by community advocates and Canadian health policy makers to work towards improving care for people with suspected endometriosis.

This paper will be presented at the following session: