Self-Reported Experiences of Women Taking Hormonal Treatments for Their Endometriosis and Uterine Fibroids Symptoms: Results from a Real-World Study in the US (MyEndoUF).

PURPOSE: To characterize the experiences of individuals taking hormonal therapies to manage their symptoms of endometriosis (EM) or uterine fibroids (UF). PATIENTS AND METHODS: This prospective, 16-week observational study enrolled US participants who self-reported having received an EM or UF diagnosis. Participants used an online platform to complete daily, weekly, and monthly surveys to self-report menstrual bleeding severity, EM or UF-associated pain severity, pain medication use, hormonal therapy changes, procedures for EM/UF, and work and productivity impairment. Results were analyzed descriptively and reported for the EM and UF cohorts separately. RESULTS: Of 411 participants, 185 had an EM and 226 had a UF diagnosis. Mean age (standard deviation [SD]) was 34.9 (7.4) and 37.5 (7.7) years in the EM and UF cohorts, respectively. Participants with EM and UF reported first heavy menstrual bleeding at 14.0 (interquartile range [IQR] 13.0, 18.0) and 19.5 (IQR 13.0, 32.0) years of age, respectively, and first pelvic pain during menses at 15.0 years of age (IQR: EM 13.0, 18.0; UF 13.0, 23.3). During the study period, 17.7% of observed days were bleeding days, most commonly spotting. Pelvic pain was rated as mild, with a median score of 3.4 (1.0, 5.0) and 2.7 (1.3, 4.4) for dysmenorrhea and 1.3 (0.4, 2.7) and 1.5 (0.3, 3.8) for non-menstrual pelvic pain for EM and UF, respectively. In both cohorts, the most frequently used hormonal treatments were combined contraceptive pills and levonorgestrel intrauterine devices, with most participants having received their current treatments for >2 years. Hormonal treatment switching or discontinuation during the study was low. Pain medication use, most frequently over-the-counter medications, was higher on bleeding days. Absenteeism, presenteeism, and work impairment scores were higher during bleeding versus non-bleeding weeks. CONCLUSION: In this observational study of individuals with EM and UF using hormonal therapy, participants reported mild symptoms, with increased pain medication use and work impairment during periods. Bleeding abnormalities and period pain appeared early in life, which could represent potential indicators for EM and UF, warranting further investigation.