Exploring the Disease Experience in Women with PCOS: A Qualitative Content Analysis.

Purpose: This study explored the lived experiences of Korean women with polycystic ovary syndrome (PCOS) and examined how cultural expectations surrounding femininity and reproductive roles shaped their illness experiences.

Methods

In-depth interviews were conducted with fifteen women diagnosed with PCOS at a women's hospital in South Korea. Data were analyzed using qualitative content analysis.

Results

Eight themes emerged: (1) A Disease That Doesn't Feel Like a Disease: Ambiguity and Reinterpretation; (2) Isolation of Body and Mind Amid Stigma and Misunderstanding; (3) Daily Life Limitations Caused by Visible Symptoms; (4) Ambivalent Feelings Surrounding Pregnancy; (5) Difficulties in Self-Management Due to Lack of Information; (6) Psychological Exhaustion From Chronicity and Lack of Control; (7) Awareness and Practices for Living With the Condition; and (8) Moving Toward a Patient-Centered Healthcare Environment. Participants experienced emotional distress related to unpredictable menstrual cycles, infertility fears, appearance concerns, and social misunderstanding. They also reported insufficient communication during clinical encounters. Cultural norms rooted in Confucian values regarding appearance and reproductive responsibility significantly exacerbated these challenges, influencing emotional distress, coping strategies, and healthcare interactions.

Conclusions

Women with PCOS experience complex psychological, social, and practical challenges that extend beyond physical symptoms. Culturally sensitive, patient-centered approaches-along with improved information delivery and public awareness-are essential to support their well-being, self-efficacy, and long-term disease management.