Polycystic ovary syndrome : exploring the social construction of acontentious diagnostic category

Abstract

Polycystic ovary syndrome (PCOS) is an endocrine condition with wide-ranging symptoms, including hirsutism, weight gain and fertility issues. As a diagnostic category, PCOS has stimulated longstanding debate and in recent years, has been transformed from a condition of unknown aetiology to a phenomenon explained in medical literature as a lifestyle condition, aggravated by ‘unhealthy’ lifestyle choices and best managed through long-term lifestyle change. Recent sociological investigations into PCOS as a lived experience reveal that many women experience PCOS as extremely distressing, but this work does not fully explore the role of the PCOS diagnostic category itself in shaping PCOS as socially contextualised experience. This study seeks to bridge this gap in sociological understanding through an in-depth analysis of 184 medical texts published between 1974 and 2019, a period when the field of obstetrics and gynaecology (OG) was embroiled in a scientific controversy regarding how best to diagnose PCOS in clinical research and practice. Using controversy as a method for analysing the distinctly social processes by which PCOS has been defined as a lifestyle disorder, I examine the role of new similarity relations, consensus conferences and a long-lasting rhetorical exchange between experts of competing perspectives in the evolution of the PCOS diagnostic category. I argue that OG experts’ inability to close the controversy resulted from the underdetermination of evidence by theory and led to a drive within OG to move the controversy away from its focus on diagnosis, towards a focus on lifestyle as central to PCOS. This has resulted in the widespread dissemination of lifestyle advice for PCOS in clinical settings, with pronounced implications for women’s PCOS experiences. It demonstrates the pivotal role played by socially informed diagnostic categories in shaping experiences of illness and the importance of more integrated analyses of the relations between diagnosis-as-category and lived experience.