[Expectations of women with endometriosis: What information to deliver? CNGOF-HAS Endometriosis Guidelines]

Abstract

Women with endometriosis often say that the information doctors give them should be improved. Patient support groups can provide missing information but may lack objectivity, or reliability, and may even generate anxiety or even harm their health. Clear unbiased medical information is the ideal. New patients with endometriosis wish to be taken seriously by primary care physicians, and be referred quickly to a specialist without further unnecessary investigation or delay. The diagnosis of endometriosis should ideally be made quickly, and should clearly specify the nature of the disease, its evolution, and its consequences on quality of life, relationships, and fertility. When choosing a treatment, information should state the risks of each treatment, the risks of recurrence long term, and the therapeutic alternatives. These should include conventional medical treatment, lifestyle adaptation, or alternative therapies. In case of surgery, prior written information should be provided, the likely scar appearance, the short and long term consequences in terms of pain, postoperative recovery time and complication rates. Once the surgery is performed, the degree of endometriotic involvement and the treatment undertaken should be explained. At discharge, patients should be told the expected recovery time, and the consequences of the operation on daily life.

Keywords: Décision médicale partagée; Endometriosis; Endométriose; Health Information; Information dans la santé; Physician-Patient Relations; Qualitative Research; Relation médecin patient; Shared medical decision making; Études qualitatives.