Comparing the Experiences of Black, Indigenous, and Persons of Color (BIPOC) to White Participants Diagnosed with Endometriosis

INTRODUCTION: Historically, endometriosis has been described as a disease of White, middle-class women. Early data from the 1970s show that 40% of Black patients with laparoscopically confirmed endometriosis had been incorrectly diagnosed with pelvic inflammatory disease preoperatively. Current research reveals that Black, Indigenous, or Persons of Color (BIPOC) with endometriosis are less likely than White patients to undergo hysterectomy via minimally invasive routes and have increased complication rates following endometriosis surgery. OBJECTIVE: We aimed to use qualitative methods to examine the diagnostic and treatment experiences of individuals with endometriosis who self-identify as BIPOC and compare them with experiences of White patients with endometriosis. METHODS: We conducted semi-structured interviews to discuss participants’ experiences with endometriosis and follow their journeys from first symptoms to diagnosis and treatment of the disease. We used rapid qualitative analysis to identify common themes. RESULTS: We completed 28 interviews, with 22 participants who self-identified as Black, Asian/Pacific Islander race, and/or Hispanic ethnicity, and six participants who self-identified as non-Hispanic White. Participants in both groups reported severe symptoms leading to diagnosis, including intense pain, bloating, and heavy periods. These symptoms had a negative impact on participants' mental health, resulting in feelings of frustration, depression, and anxiety. Preliminary results indicate that more White participants were aware of the existence of endometriosis when they began seeking care for their symptoms compared to BIPOC participants. Time to diagnosis of endometriosis ranged from 4–15 years for White participants and 2–25 years for BIPOC participants. Both groups reported similar experiences of feeling dismissed by health care providers and needing to advocate for themselves in order to receive the diagnosis of endometriosis. Many BIPOC and White participants reported that cultural and familial stigmas surrounding menstruation, sexual activity, and pelvic pain led to delays in their diagnosis. More than half of the BIPOC participants reported that their race and/or ethnicity negatively influenced their care, experiences, and trust in the medical system. This observation was noted similarly by multiple White participants, that they felt patients of color were more commonly dismissed by the health care system. CONCLUSIONS: While the majority of participants with endometriosis in this qualitative analysis experienced diagnostic delays, BIPOC participants believed they were more commonly dismissed by health care providers and that their racial and ethnic identities negatively affected their care. Universal screening for endometriosis and normalizing discussions surrounding common symptoms could aid in overcoming barriers to diagnosis, particularly for BIPOC individuals.