The Hidden Battle: Lived Experiences of Women with Polycystic Ovary Syndrome in Mysuru, India

Background: Polycystic Ovary Syndrome (PCOS) is a prevalent endocrine disorder, frequently identified during fertility assessments but often emerging shortly after menarche. Over the past decade, qualitative research has underscored its substantial psychosocial impact, including heightened anxiety, body image concerns, fears surrounding infertility, and societal pressures. This study seeks to examine women’s beliefs, cultural perceptions, treatment experiences, and emotional responses related to PCOS, with the goal of guiding researchers and healthcare professionals in designing patient-centred, culturally sensitive, and holistic interventions that address both the physical and psychological dimensions of the condition. Methods: A qualitative exploratory study was conducted among women diagnosed with polycystic ovarian syndrome within age range of 15–49 years at a tertiary care hospital, in Mysuru District of Karnataka. A purposive sampling technique was adopted and data collection period lasted for 3 months, from November 2024 to January 2025. In-depth interviews were conducted using a structured, and validated interview guide. Thematic analysis was employed as the primary analytical framework and systematic coding, and organisation of data was done on NVivo 15 software. Results: The study found significant gaps in awareness, especially in rural areas, where myths lead to symptom interpretation. Participants reported poor quality government sanitary napkins, delayed diagnoses, and lack of empathy from providers. Physical concerns included fatigue, poor sleep, and difficulty with lifestyle changes. Emotional stressors like fertility anxiety and stigma were common, with many expressing a need for psychological support. Barriers such as low health literacy, poor screening, and limited healthcare access were noted. Though PCOS was seen as manageable, frustration remained. These findings highlight the urgent need for affordable, empathetic and accessible PCOS-related healthcare services. Conclusion: The multifaceted impact of PCOS is highlighted in the present study with includes the physical, emotional, social and systematic changes. Key issues include low awareness, stigma, delayed diagnoses and limited access to affordable care. Participants stressed the need for awareness campaigns, stronger primary care, community support and school-level education and screening. Addressing these through a holistic, multi-level approach involving individuals, communities and policymakers can lead to a more inclusive, informed and effective PCOS care and management.