Life after a diagnosis with endometriosis - a 15 years follow-up study

Objective. Previous studies have elucidated the negative impact of endometriosis on life, but the patient selection may have contributed to a skewed picture. The aim of this study was to investigate longitudinally the consequences of the disease in women diagnosed with endometriosis 15 years ago. Design. Retrospective descriptive. Setting. Trondheim 2007. Sample. One hundred thirty women diagnosed with endometriosis at St. Olav's Hospital in Trondheim between 1991 and 1993. Methods. Questionnaires. Response rate of 60%. Main outcome measures. Consequences of living with endometriosis. Results. Of the women, 19.2% never experienced pelvic pain and 21.8% did not have any further visits to the gynecological department after being diagnosed. Almost 70% had received pharmaceutical treatment and positive effect on pain was reported by 41% for NSAIDs and oral contraceptives, and by 62% for progestins and GnRH-analogues. Satisfactory effect on pain after surgical interventions at the time of diagnosis was reported by 60.9%, and by 89.9% after later surgeries. Of the infertile patients, 75.6% succeeded in delivering one or more biological children. Half of the women reported that endometriosis had some negative impact on their lives. After menopause, 96.9% were free from pain. Conclusion. This study confirms that endometriosis is a condition that often has considerable impact on a woman's life. However, the study also found that endometriosis does not always cause pain, that treatment in many cases is effective, that infertility may be overcome, and that almost all postmenopausal women were free from endometriosis-associated pain.