Treatment of endometriosis involving a self-help group positively affects patients' perception of care

Chronic endometriosis is notoriously difficult to treat and many women become frustrated with their care. We established an Endometriosis Clinic as a co-operative venture between a group of gynecologists and a self-help group, the Endometriosis Association of Victoria. The aim of this study was to examine the clinical characteristics of women attending the clinic and to determine patient satisfaction with the clinic. The study involved a review of patient histories and a postal satisfaction questionnaire. Three hundred and fourteen women attended the clinic during its first year of operation. Seventy per cent had had a diagnosis of endometriosis made elsewhere and attended the clinic for a second opinion or for more information. Eighty-six per cent presented with symptoms suggestive of endometriosis, 8% presented with infertility and 6% complained of both symptoms and infertility. When patients were asked to score the overall service provided by the clinic on a scale of 1 to 10, scores ranged from 4 to 10 with a mean of 8.7. Ninety-seven per cent of women felt that the consultation with a counselor from the Endometriosis Association was a major source of satisfaction. We have documented a significant demand for and high patient satisfaction with the concept of integrating a patient self-help group in the standard model of health care for endometriosis.