'The thief of womanhood': women's experience of polycystic ovarian syndrome

Abstract

Previous research on polycystic ovarian syndrome (PCOS) has overwhelmingly been conducted within a medical or psychiatric framework, and has failed to explore women's own experience of the syndrome. Interviews were conducted with 30 women with PCOS recruited through a national self-help organisation. Thematic analysis of the interviews revealed pervasive reports of feeling 'freakish', 'abnormal', and not 'proper' women. These feelings were related to three symptoms commonly experienced by women with PCOS: 'excess' hair growth; irregular, absent or disrupted periods; and infertility. Smooth hairless bodies and faces, regular menstruation and the capacity to bear children were associated with femininity, and as a result of their symptoms women expressed feeling 'different' from other women and less 'feminine'. The results are discussed within a feminist framework and suggest that polycystic ovarian syndrome is a deeply stigmatising condition, 'a theft of womanhood', with far reaching implications for all women, whether or not they conform to 'feminine' norms.