‘I'm usually being my own doctor’: women's experiences of managing polycystic ovary syndrome in Canada

BACKGROUND: Polycystic ovary syndrome (PCOS) is a complex, chronic condition characterized by anovulation, polycystic ovarian morphology and hyperandrogenism that requires lifelong management. To reduce the risk of comorbidity and to manage symptoms, lifestyle management and pharmaceuticals such as oral contraceptives are the most common forms of treatment and should be tailored to the individual patient. The literature to date has shown PCOS patients to experience widespread dissatisfaction with the amount and quality of information they receive from providers, along with lower levels of trust in physicians. Little is known about the lived experiences of women managing PCOS in Canada, across age groups. METHODS: In-depth remote interviews explored women's lived experiences managing PCOS and the barriers and facilitators they encountered in their management journeys. Data were analyzed using thematic analysis and interpretive description methodology. RESULTS: Twenty-five in-depth, telephone interviews conducted with participants (aged 18–63 y) across Canada revealed participants lacking sufficient information and guidance from physicians, especially in primary care. Areas in need of more guidance included lifestyle management and mental health. Lack of empathy and weight bias among physicians were also perceived by participants. Older participants received little guidance on treatment options postmenopause. Loss of trust and withdrawal from seeking medical care were prominent themes, along with greater self-reliance on self-management, including self-educating and self-experimenting with treatments. CONCLUSIONS: Most women in this study were frustrated with the level of involvement and information provision from their doctors. Key recommendations are identified for the provision of care to younger and older patients with PCOS. Improved education for physicians may be needed to improve the quality of healthcare provision for PCOS.