Endometriosis is a chronic inflammatory disease defined as the presence of endometrial tissue outside of the uterus. Common symptoms include chronic pelvic pain, dysmenorrhea, dyspareunia, dysuria, dyschezia and infertility.1,2 On average, women see their primary care physician 7 times before referral to a specialist and are diagnosed with endometriosis 7-12 years after initial symptom onset.1,2 Traditionally the gold standard of diagnosis is laparoscopic visualization with or without histologic confirmation. In 2022 the European Society of Human Reproduction and Embryology expanded their guidelines to include clinical diagnosis with concerning symptoms or exam findings, through imaging, or surgically with laparoscopic visualization with histologic confirmation. 3

Endometriosis is commonly estimated to affect approximately 10% of reproductive-age women worldwide, however incidence and prevalence rates vary widely based on study methodology and are difficult to calculate secondary to lack of noninvasive diagnostic techniques and heterogenous clinical presentation.1,4 Data suggest disparities exist in the diagnosis and management of endometriosis.5, 6, 7, 8, 9, 10 A recent systematic review and meta-analysis showed Black and Hispanic women were less likely to be diagnosed with endometriosis compared to White women.5 In 2021, Christ et al. demonstrated 70% of women diagnosed with endometriosis were White.8 Moreover, race and ethnicity have been associated with surgical care for endometriosis, with studies demonstrating women of color have higher complication rates compared with White women. 9, 10 Other factors, such as public insurance and low socioeconomic status are also associated with lower likelihood of endometriosis diagnosis.11, 12

There are minimal nationally representative or high-quality data on the prevalence of endometriosis in the United States, or the demographic characteristics of those who carry the diagnosis. Previous studies use large percentages of Non-Hispanic White participants or those undergoing surgery as the study population. 5 A recent study revealed women self-report endometriosis diagnosis with reasonable accuracy (>70%).13 Therefore, studies using self-reported survey data may meaningfully contribute to the paucity of data on endometriosis prevalence and characteristics. We aimed to use nationally-representative survey data to compare the demographics of United States women diagnosed with endometriosis, to those of women who have not received an endometriosis diagnosis. We hypothesized the diagnosis of endometriosis would be more common in historically privileged groups than in historically-marginalized groups due to intersecting barriers to care.