“I Never Know From One Day to Another How I Will Feel”: Pain and Uncertainty in Women With Endometriosis

Abstract

Endometriosis is a chronic condition of women in which endometrial tissue is present outside of the uterus. It is characterized by pelvic pain. The aim of this prospective study was to explore women's experience of living with endometriosis. A sample of 30 women was recruited from a dedicated endometriosis clinic. Semistructured interviews were conducted upon recruitment and after one year, these data being supplemented by diary keeping by a volunteer sample. As a storytelling approach was utilized for data collection, narrative analysis was considered most appropriate. The findings are presented using the concept of uncertainty, which has been found in previous research to be a feature of long-term illness. Uncertainty exists around diagnosis, the course of the disease, and the future. It is argued that the way in which the pain of endometriosis is interpreted and managed by women and health professionals is integral to this uncertainty.