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

Polycystic ovary syndrome (PCOS) is the most common endocrine syndrome that disproportionally affects women of childbearing age (similar to 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.