Treatment utilization for endometriosis symptoms: a cross-sectional survey study of lifetime experience

Objective: To examine the lifetime utilization and perceived benefit of medical treatments and surgical procedures for endometriosis-related symptoms. Design: Cross-sectional study of self-reported survey data. Setting: Academic research setting. Patient(s): Self-reported surgically diagnosed endometriosis by 1,160 women responding to the 1998 Endometriosis Association survey. Intervention(s): None. Main Outcome Measure(s): Use, perceived helpfulness, and outcomes of medical treatments and surgical procedures. Result(s): Ninety-five percent of respondents reported pelvic pain, had endured symptoms on average of 16 years, and were young (mean: 36 years), white, and educated. Many women (46%) had tried three or more medical treatments, and almost 20% took them for 10+ years. Many reported medical treatments as helpful for symptoms (range, 36.4%-61.9%), but some reported stopping because of ineffectiveness (range, 15.6%-26.1%) or side effects (range, 10.0%-43.5%). Danazol or medroxyprogesterone acetate (MPA) was most commonly stopped because of side effects (range, 40.7%-43.5%). Surgical procedures were performed at least three times on 42%. Nearly 20% had a hysterectomy or oophorectomy; these procedures were reported as most successful in improving symptoms (45.9% and 37.8%, respectively). Conclusion(s): Despite reporting various treatments as helpful, women used many different types and endured symptoms for an average of almost two decades, indicating the profound effect of endometriosis on women's health.