Social isolation in women with endometriosis and chronic pelvic pain

Abstract Objective To evaluate the perceptions of women with endometriosis and chronic pelvic pain regarding their social ties. Methods A qualitative study was undertaken of women with chronic pelvic pain and endometriosis. Focus groups discussions among four to six participants were performed until saturation at the Clinics Hospital of Ribeirao Preto Medical School, Ribeirao Preto, southwest Brazil, between February 2013 and January 2014. Transcripts were analyzed according to the grounded theory approach and the emerging categories were coded using the WebQDA platform. Results Six focus group discussions took place, with a total of 29 patients. Social isolation was the main emerging theme. Social isolation was associated with a lack of understanding about endometriosis symptoms and with resignation in face of recurrent pain episodes. Avoiding partner intimacy and isolation from family and friends were components of social isolation. Conclusion Women with endometriosis develop progressive social isolation after the onset of chronic pelvic pain. This finding is important for the multidisciplinary management of the disease.