The social support experiences of women with endometriosis

Abstract

Approximately one in seven women have endometriosis, a disease that may cause pain and/or infertility. Therefore, many women experience the stress of this disease in their life and yet little is known about how they cope with this stress. This study focuses on the coping resource of social support.

The social support experiences of forty-six women, who participate in an endometriosis support group on the Internet, were examined. A questionnaire was designed to explore the social support experiences of these women in four relationship categories: spouse/partner, friends/extended family, others with endometriosis, and health care providers. In written responses, these women shared many poignant and compelling stories about their struggles with the disease and their experiences with social support relative to the disease.

The participants’ responses were analyzed for themes. Overall themes that emerged from the analysis include: the participants wanted to be listened to and believed, they wanted their support network to be knowledgeable about endometriosis, they wanted others to understand the symptoms of the disease, and they wanted their support system to share information about the disease.