Endometriosis Diagnosis Pathways and Disability Considerations

Endometriosis—a chronic, inflammatory, non-cancerous, gynecologic condition—is characterized by the spread of endometrial tissue exterior to the uterus. Individuals with endometriosis can experience burdensome and disabling symptoms and prolonged times to diagnosis. Extended times to diagnosis can have serious consequences on health and life trajectories. The overarching goal of this three-paper dissertation is to explore and improve understanding of pathways to diagnosis and disability considerations for those suffering from endometriosis. A life course perspective guided three analyses to achieve four aims: (1) a systematic scoping review mapping the current international, English-language, scientific peer-reviewed and gray literature investigating pathways, timing, and delays in diagnosis of endometriosis; (2) a review of federal appeals cases of disability decisions of Social Security Disability Insurance (SSDI) and/or Supplemental Security Income (SSI) disability claims within which endometriosis appeared as an impairment; (3) a qualitative study to map participant pathways to diagnosis using qualitative interviews and analysis informed by a life course perspective; and (4) determine commonality and variation between participants in the qualitative study who perceived the time to diagnosis as timely and those who perceived the time as delayed. The scoping review reveals limited diversity among samples, little grounding in theory, and varied definitions of terms (i.e., delay, timing, and pathways). Review of the U.S. federal courts’ opinions concerning SSDI and SSI claims highlighted common themes (evidence, treatment, and time) while revealing conflicts between common characteristics of endometriosis, evidence requirements, and misconceptions. Finally, the case studies and framework matrices of the participants’ interviews showed a dynamic interplay between life courses and pathways to diagnosis of endometriosis. All but two participants perceived their time to diagnosis as prolonged (universal across SES and race/ethnicity).Future endometriosis research concentrating on pathways, timing, and delays in diagnosis of endometriosis would benefit from more diverse study samples, uniformity in definitions, and theoretical grounding. Ethnically and socioeconomically sensitive and inclusive interventions designed to improve times to diagnosis of endometriosis will help reduce uncertainty, hasten access to treatment, reduce complications from delay, and potentially improve applications for disability support.