Diagnostic and Lived Experiences with PCOS
From 2017-2018, we launched a qualitative study into women's diagnosis and lived experiences with PCOS.
Here is a brief summary of what we found in our research
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
This study is part of a long-term research agenda to better understand the reason behind lengthy diagnosis experiences, particularly in Canada, misdiagnoses/errors, disclosure/social support, patient-practitioner communications, and stigma, and the impact these lags have on women's health, well-being, and quality of life. We are also exploring links between PCOS and IPV, as well as medical gaslighting, and forms of resistance/self-advocacy, and are compiling information/education and advocacy resources under our resources tab.
To all of our participants, thank you for participating in this study and for sharing your story with us! We are so grateful! (for more information or to reach out to us, please email me at email@example.com)