Endurance and contest: women's narratives of endometriosis

Abstract

Endometriosis is an often painful medical condition in which, in response to hormones associated with the menstrual cycle, the uterine lining grows in the peritoneum and other organs, bleeding into the surrounding organs and tissues. Diagnosis is not always straightforward, and women and health professionals alike may have difficulties recognizing period pain as a sign of anomaly, considering it instead as an inevitable part of menstruation. This article describes the illness narratives of Australian women with endometriosis, drawing on data collected during a study conducted in Victoria in 2004-5. Thirty women (aged 20-78 years) from various socio-demographic backgrounds participated in in-depth interviews. We explore the influence of socio-demographic background and social and family norms on women's illness narratives of endurance and contest. Narratives of endurance are characterized by the normalization of period pain by young women, their families and health professionals, and, with diagnosis, long-term exposure to biomedical treatments. In contrast, narratives of contest are dominated by how women's subjective experience is challenged by doctors, their requirements for a patient-centered approach, and their desire to have access to complementary treatments.