Introduction: Endometriosis is a burdensome chronic disease that can be difficult to diagnose, yet few studies examine experiences along the continuum of disease state. We sought to explore women’s journeys to an endometriosis diagnosis, experience with endometriosis pain, and interactions with healthcare practitioners. Methods: An anonymous 23-question online survey was distributed to women (aged >19 years) who self-identified as having a surgical or nonsurgical diagnosis of endometriosis and living in seven English-speaking countries through the social media network MyEndometriosisTeam.com . Results: From January through April 2018, 317 women in the United States and 134 women outside the United States completed the survey. More than 50% of the women waited 6 or more years for a diagnosis of endometriosis. Overall, 54.3% experienced endometriosis-related pain daily. Respondents (US/non-US) reported a significant impairment in quality of life that interfered with their family (45.7%/45.5%) and social life (40.1%/44.0%), education/career (42.9%/46.3%), and sexual function (68.1%/70.1%). Women reported their disease led to other conditions, including fatigue (93.6%), gastrointestinal issues (91.8%), and difficulty sleeping (87.4%). Many women were not satisfied with their practitioner’s ability to listen to concerns and felt that their practitioner’s treatment recommendations lacked consistency with their own goals/needs. Conclusion: Women still experience long delays and difficult journeys to an endometriosis diagnosis. Disease-associated pain is pervasive and has direct and indirect impacts on quality of life. Women are frequently not satisfied with disease-management options presented to them by their practitioners. These results suggest a need for improved medical education on disease state for both patients and practitioners.

Background Women with endometriosis are commonly treated by their sole provider. In this single-provider model of care, women frequently report long diagnostic delays, unresolved pelvic pain, multiple laparoscopic surgeries, sequential consultations with numerous providers, and an overall dissatisfaction with care. The emergence of multidisciplinary endometriosis centers aims to reduce diagnostic delays, improve pain management, and promote patient satisfaction; however, baseline data at the time of presentation to a multidisciplinary center are lacking. Methods A real-world, retrospective, single-site, cross-sectional study of women with surgically confirmed and/or clinically diagnosed endometriosis generated baseline data for a planned longitudinal assessment of multidisciplinary care of endometriosis. The primary objective was to determine the proportion of patients experiencing mild, moderate, or severe pain for dysmenorrhea, non-menstrual pelvic pain (NMPP), and dyspareunia at entry into a multidisciplinary endometriosis clinic. Also explored were relationships between pain scores and clinical endpoints obtained from electronic medical records. Results More than half (59%) of the study participants (n = 638) reported experiencing pelvic pain for ≥ 5 years. Pain intensity was highest for patients reporting dysmenorrhea, followed by NMPP, and dyspareunia. Significant correlations were observed between total pelvic pain and patient age (r = –0.22, p < 0.001, n = 506) and number of previous healthcare providers (r = 0.16, p = 0.006, n = 292); number of previous providers and duration of pain (r = 0.21, p = < 0.0001, n = 279); and duration of pain and years since diagnosis (r = 0.60, p < 0.001, n = 302). Mean pain scores differed significantly by age group for dysmenorrhea (p < 0.001), NMPP (p = 0.005), and total pelvic pain (p < 0.001), but not for dyspareunia (p = 0.06), with the highest mean pain scores reported among those < 30 years of age. Conclusion These real-world data indicate that in the single-provider model of care, unresolved pelvic pain is common among women with endometriosis. Alternative care models, including a multidisciplinary approach, need to be evaluated for improvements in clinical outcomes. These data also highlight the importance of addressing NMPP, which may be particularly troublesome for patients.

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