Women’s experiences of polycystic ovary syndrome diagnosis and treatment in Mexico: information delivery and communication

Abstract

Background: Polycystic ovary syndrome (PCOS) is the most common endocrine disorder affecting women across the lifespan. A timely diagnosis and evidence-based approaches are key in management of this condition. The aim was to examine women’s experiences of PCOS diagnosis and treatment, and to assess receptiveness to a web-based intervention. Methods: Women from two online support groups completed a web-based survey (n=105). Eligibility criteria included: being a Mexican resident, aged 18 to 45 years, and having a previous medical PCOS diagnosis. Mean age was 29 (SD ±4.7) years; mean BMI was 30.2 (SD ±5.7) kg/m². Results: For 19%, time to diagnosis was more than 2 years and 36% visited three or more health professionals before being diagnosed. Almost one-third (30%) reported not being directed to information about PCOS at diagnosis, 23% received information, and 47% received information but felt it was insufficient. Of those who received information, the majority (73%) felt dissatisfied with or indifferent to information provided, 69% reported having received information about lifestyle management (nutrition and exercise), 78% about potential infertility, and 28% about mental health support. After being diagnosed, Internet was the preferred source of PCOS information for the majority (90%), whilst 9% preferred clinicians. 98% of the women reported being interested in participating in a web-based lifestyle intervention for PCOS management. Conclusions: PCOS diagnosis is often delayed, requires various health professionals, and leaves a gap on information provision. Findings suggest the need for development and feasibility trial of a lifestyle online intervention for women with PCOS.