Learning to live with endometriosis : a grounded theory study

This study examines the psychosocial processes involved in women's experiences of living with endometriosis. Ten women diagnosed with endometriosis participated in unstructured formal interviews. The researcher discovered that the respondents define endometriosis as a chronic illness and, consequently, they are undergoing a process of learning how to live with endometriosis. Grounded theory methodology was used to determine four stages in the process of learning to live with endometriosis: discovering the cause(s) of menstrual problems, getting treatment, dealing with doctors and living with symptoms. Phases in each stage of the process of learning to live with endometriosis are described. The social construction of endometriosis is also explored through an examination of popular magazine articles and self-help books about endometriosis. Endometriosis is primarily constructed as a fertility problem, whereas the participants regard endometriosis primarily as a chronic illness, and secondarily as a fertility problem. Women's lived realities of the disease, as described by the participants, are not usually included in the popular press. -- Discussion focuses on the disjuncture between the lived realities of endometriosis described by the participants and the social construction of endometriosis in the popular press. By reconstructing endometriosis in a way that includes women's experiences of endometriosis, medical and popular knowledge of endometriosis could reflect women's lived realities of the disease.