The Impact of Race and Ethnicity on Endometriosis Severity, Presentation, and Access to Surgical Care

INTRODUCTION: The impact of race/ethnicity on the prevalence, presentation, and severity of endometriosis is not well understood. Historically, there has been a widespread misconception that endometriosis is a White woman’s disease, even documented in foundational gynecology textbooks as recent as 2020. Implicit and/or explicit bias among the medical community may lead to misattribution of endometriosis symptoms and delayed diagnosis among non-White patients. OBJECTIVE: The primary objective of this study was to assess whether the severity/phenotype of endometriosis varies by patient race/ethnicity. Additionally, we aimed to evaluate racial/ethnic differences in symptom presentation, prior evaluation and medical management, and access to surgical care for endometriosis. METHODS: We conducted a retrospective cohort study of all patients who underwent surgery for endometriosis from 11/1/2013 to 10/31/2023, who had surgical or pathological documentation of the presence of endometriosis, at a quaternary-care institution in the United States. Patients with gynecologic malignancy, urgent surgeries for a non-endometriosis indication, and cases with missing race or ethnicity data were excluded. The primary outcomes of the study were the rates of stage III/IV endometriosis and endometriomas documented intraoperatively. Secondary outcomes included rates of presenting symptoms, prior hormonal therapies, and prior imaging evaluation. Additionally, age at first endometriosis surgery and time from consultation to surgery were assessed as proxies for potential diagnostic delays and access to surgical care. Outcomes were compared by race/ethnicity, and logistic regression was used to adjust for potential confounders. RESULTS: Of 1,466 patients, 58% were non-Hispanic White (White), 6.6% non-Hispanic Black (Black), 17.2% Hispanic, 20.1% non-Hispanic Asian (Asian), and 5.3% American Indian/Alaska Native, Native Hawaiian/Other Pacific Islander, or Other/Multiracial (AI/AN/PI/O/M). All non-White groups had higher rates of stage III/IV endometriosis compared to White patients (Black, 56.7%, adjusted odds ratio [aOR] 2.63, 95% confidence interval [CI] 1.70–4.07; Hispanic 46.2%, aOR 2.35, 95% CI 1.31–2.35; Asian 58%, aOR 2.50, 95% CI 1.78–3.51; AI/AN/PI/O/M 46.2%, aOR 1.70, 95% CI 1.06–2.73 vs. White 33.2%). Endometriomas were more common among Asian patients versus White patients (aOR 2.03, 95% CI 1.44–2.85). Age at first surgery varied by race/ethnicity, with the highest median age among Hispanic (36 years) and Black (34 years) patients and the lowest among Asian patients (31 years) (p<.001). Black, Hispanic, and Asian patients had a longer interval from initial consultation to surgery compared to White patients (p=.002). Hispanic patients were most likely to present with dyspareunia (p=.025), and Asian patients were most likely to present with infertility (p=.017). Asian patients were less likely than White patients to have undergone hormonal treatment (61.5% vs 77.3%; p<.001). Black and Hispanic patients were more likely than White patients to have been evaluated with magnetic resonance imaging preoperatively (39.2% and 30.4% vs. 21.8%, p<.001). CONCLUSIONS: Non-White patients were more likely to have stage III/IV endometriosis, were older at the time of their first endometriosis surgery, and experienced delays between initial evaluation and surgery. These findings suggest that delayed diagnosis of endometriosis may be a driver of increased disease severity among non-White patients (Tables 1 and 2).