Therapeutic journey of adolescents and young adults with severe dysmenorrhea and endometriosis

Abstract

Introduction: We aimed to appreciate the diagnostic and therapeutic journey of young women with endometriosis including disease presentation, obstacles to diagnosis and management, and impact on their life. Methods: We employed a mixed-method design, including chart review, 94-item questionnaire assembled from components of the EPHect EPQ-S and semi-structured interviews. The study setting was Kingston Health Sciences Centre in Kingston, Ontario. Participants were women under 28 years with severe dysmenorrhea. Questionnaire data was analyzed using descriptive statistics. Interviews were coded using the constant comparative analysis method by two analyzers and inter-rater reliability was calculated, then data were compared using a cross-sectional method. Results: Twenty-four participants were identified through chart review, 10 completed the questionnaire, and 5 participated in the interviews. Questionnaire participants, mean age 24.5 years ± 2.3, reported initial pelvic pain at a mean age of 13.9 years (SD 1.9). Fifty percent of participants have an endometriosis diagnosis, at a mean age of 19.2 years (SD 2.6). Three major themes emerged from our analysis. The journey with disease and therapy begins long before diagnosis and creates a culture of self-directed care. Lack of knowledge about endometriosis and women’s health by health care professionals and the public delays diagnosis and therapy. Endometriosis broadly impacts every aspect of an individual’s life. Conclusion: We found that young adults with severe dysmenorrhea and/or endometriosis present with symptoms at a young age. They encounter multiple obstacles in reaching a diagnosis and obtaining therapy. They often self-manage their pelvic pain and experience reduced quality of life.