Path to diagnosis and women’s perspectives on the impact of endometriosis pain

Abstract

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.