Social Determinants Surrounding Endometriosis Diagnosis Delays in the United States

Endometriosis has created a public health crisis in the United States due to its high prevalence, and its severe health ramifications. Not only does endometriosis have a wide-ranging prevalence in the population, as it is predicted that 1 in 10 females of reproductive age suffer from this disease, but endometriosis significantly decreases this population's quality of life, productivity, and emotional well-being due to chronic pain and infertility issues. There have been several identified reasons behind the endometriosis diagnosis delay, including patient and provider-centered causes, which lead to the dismissal, stigmatization, and tolerance of symptoms. However, there is limited research about the social determinants influencing the United State's diagnosis delay. This study aimed to investigate the social determinants surrounding the endometriosis diagnosis delay by interviewing Endometriosis patients about their own diagnoses. Participants were also asked about their satisfaction about their endometriosis diagnosis. A thematic analysis was conducted using patient testimonials to reveal trends surrounding the endometriosis diagnosis delay. On average, 40 participants reported experiencing a diagnostic delay of 11.75 ± 7.94 years. Participants report significant dissatisfaction with the timeliness of the endometriosis diagnosis, the providers' ability to be communicative and receptive, and the providers' ability to diagnose endometriosis. Many social determinants were also associated with diagnosis delays - including gender, ethnic, racial, economic, geographical location, age, and sexual orientation factors. Not only do participant testimonials reveal the need for culturally competent care, validation, and patient-centered care during the endometriosis diagnosis process, but these testimonials also emphasize the need for diagnostic surgery and specialized care as endometriosis is a complex disease that can have systemic implications on a patient. The American College of Obstetricians and Gynecologists (AGOG) endometriosis care guidelines should be adjusted to reflect the needs of endometriosis patients.