Endocrine Abstracts

Background: Polycystic Ovary Syndrome (PCOS), an endocrine disorder affecting 9-18% of reproductive-aged women, impacts all body types including those with a normal body mass index (BMI) often termed lean or atypical PCOS. This study aimed to investigate the diagnosis experience in an international sample of lean women with PCOS.

Methods: Participants were recruited from social media sites aimed at women with PCOS. Eligibility criteria included being ≥18 years of age, having a prior diagnosis of PCOS, and having a self-reported BMI ≤25 kg/m². Survey questions were adapted from previously published research. Categorical data were analyzed as count and proportions. Chi-squared tests were conducted to test for associations between various factors and satisfaction with the diagnosis experience. Strengths of associations were further assessed using Cramer’s V coefficients. Post-hoc analysis was conducted using adjusted standardized residuals. Statistical significance was set at P<0.05. Qualitative data was analyzed utilizing an inductive thematic approach.

Results: Participants (n=150) represented 31 countries. Approximately 49.0% reported PCOS diagnosis experience dissatisfaction, 72.8% disagreed that there is adequate information about lean PCOS and 80.2% disagreed that health professionals have adequate knowledge about lean PCOS. Significant associations were found between length of time to diagnosis and diagnosis satisfaction (P=0.001, X2=18.133, df=4, Cramer’s V=0.258) as well as number of medical professionals seen and diagnosis satisfaction (P<0.001, X2=18.095, df=2, Cramer’s V=0.362). The top three PCOS concerns reported included irregular menstrual cycles (72.0%), hormone imbalance (64.7%), and anxiety (49.3%). Online blogs, support groups or forums (69.3%) and social media sites (48.7%) were the primary sources participants turned to for PCOS information. Qualitative analyses revealed the following primary theme across all questions: participants received limited information from providers about PCOS management. Secondary themes included participants reporting the need to conduct their own research on the condition and a focus on weight throughout the diagnosis process. Participants reported feeling that providers dismissed PCOS as a possible diagnosis, or focused on weight management in the treatment plan, despite their normal BMI. Overall, the diagnosis experience was reported to be an emotional journey.

Conclusions: This study demonstrates that the diagnosis experience in lean women with PCOS includes high feelings of dissatisfaction and is an emotional journey. The results of this study highlight opportunities for improvement in PCOS healthcare given and received worldwide, including in patients with lean PCOS. Future research should further examine lived experiences of women with lean PCOS.