The Diagnostic Experiences of Women With Polycystic Ovary Syndrome (PCOS) in Ontario, Canada

Abstract

Polycystic ovary syndrome (PCOS) is the most common endocrine syndrome that disproportionally affects women of childbearing age (~8% to 13% of women worldwide). If unmanaged, it can lead to chronic, lifelong complications. Over the past decade, improvements in diagnostic guidelines have not produced an expected reduction in the diagnostic timeframe. We examined the potential reasons underlying this diagnosis delay. Participants first constructed a diagnostic timeline and then charted and reflected on their diagnosis journeys. Through a reflexive thematic analysis, five themes represented the most common diagnostic trajectory: (a) dismissal of adolescents’ early symptoms, (b) negative diagnostic encounters, (c) wariness of treatment options, (d) uncertainty for the future, and (e) self-education and advocacy. Our findings lead us to argue for education of physicians and allied professionals to strengthen patient-centered care delivery to women with a focus on building in training supports that include critically informed, social justice foundations.

“I felt like she didn’t take me seriously”: a multi-methods study examining patient satisfaction and experiences with polycystic ovary syndrome (PCOS) in Canada

“…Several guidelines have been published in the last 5–10 years detailing the need for mental health screening at the time of diagnosis [ 13 , 15 , 17 ]. Although previous studies and guidelines had been published to highlight the importance of mental health screening with PCOS, recent data from this study and others [ 28 – 30 ] suggests that so far that clinical shift does not appear to have occurred yet.…”

Knowledge, Attitudes, and Barriers towards Dietary Pulse Consumption in Women with Polycystic Ovary Syndrome Participating in a Multi-Disciplinary Lifestyle Intervention to Improve Women’s Health

“…Therefore, we leveraged this directed access to improve the quality of care for our study cohort. Accordingly, caution should be exercised in future research to promote this approach, since we and others have shown PCOS is often difficult to diagnose and poorly understood by healthcare providers [32,61], thus highlighting the need to establish an accurate diagnosis and provide evidence-based care to this clinical population.…”

“I didn’t feel normal”: Young Canadian women’s experiences with polycystic ovary syndrome

“…Despite notable exceptions (e.g., Kitzinger & Willmott, 2002;Soucie et al, 2021a), scholars have not attempted to deconstruct what is considered "normal" regarding societal expectations of normative femininity for (young) women with PCOS. Young women have to balance gendered power dynamics, such as the physician-patient relationship (Nimmon & Stenfors-Hayes, 2016).…”

“…Since women occupy various social locations, knowing the ways these identities and power differentials intersect to create systems of oppression is important, and has been echoed in feminist urgings to engage in intersectional analyses (e.g., Purdie-Vaughns & Eibach, 2008). It may also be challenging because young women feel they are directly contradicting societal expectations through their experiences (e.g., Soucie et al, 2021a). Balancing gendered expectations and power differentials is a reality for young women with PCOS and a critical feminist inquiry is essential, especially as a way to consider the unique combination of identity-related aspects to experience.…”

“…The interview questions focused on the women's diagnostic journeys, including their experiences seeking and receiving care in Canada before, during, and after diagnosis, as well as their navigation of balancing societal and cultural expectations with PCOS. Participants also discussed their experiences with PCOS and where they are now, after diagnosis, and what longterm concerns they have about their futures (see Soucie et al, 2021a, for the entire interview protocol). Participants were compensated with $20 for their time.…”