Racial gaps in diagnosis and care for endometriosis reported

Racial gaps in diagnosis and care for endometriosis reported | Image Credit: © Jelena Stanojkovic - © Jelena Stanojkovic - stock.adobe.com.

A cross-sectional qualitative review published in BMC Women’s Health highlights the need for culturally responsive, patient-centered care in Black women with endometriosis.¹

Despite significantly impacting emotional well-being, endometriosis is often underdiagnosed, underreported, and under-researched in Black women. This has been indicated by a national sample of US women with endometriosis, being 71.81% comprised of White women and 8.56% of Black women.²

“A comprehensive exploration of Black women’s experiences with endometriosis and its impacts on their quality of life could contribute much-needed knowledge and perspectives, and help elucidate future research and clinical implications to address Black women’s needs,” wrote investigators.¹

Data collection and coding

The cross-sectional analysis was conducted to evaluate quality of life perspectives among Black women with endometriosis. Participants were recruited through Facebook advertisements and the Research Match recruitment website, with eligible patients being Black, aged 18 to 45 years, living in the United States, and diagnosed with endometriosis.

Patients attended interviews guided by an in-depth interview guide over Zoom between September and October 2021. Subjects of conversation included endometriosis experiences and knowledge, quality of life impacts, health care system navigation, patient-provider interactions, and self-advocacy and resilience perceptions.

A study author performed the initial transcription review, with themes developed from 16 interviews. This was followed by the development of a preliminary codebook, with deductive codes developed from the interview guides and inductive codes through transcript assessments.

Physical symptoms and psychosocial impact

Eight of the 16 participants were aged 36 to 45 years. Residing in the US Northeast, West, and Midwest was reported by 3 participants each, while 7 resided in the South. Eleven patients identified clinical diagnosis as a form of endometriosis diagnosis, 6 laparoscopy, 4 ultrasound, 2 MRI, and 2 other.

The first theme identified was physical symptoms, which included vomiting, pelvic pain, headaches, pain during sex, heavy bleeding, rectal pain, constipation, and blood clots. Many patients experienced these symptoms as teenagers and later linked them to endometriosis. Additionally, symptoms were often intense and radiated to areas of the body beyond the uterus.

Psychosocial impacts were discussed as a second theme. Following a diagnosis, many patients were frustrated about the duration between symptom onset and diagnosis, alongside the severe health concerns that may have been prevented with earlier diagnosis.

However, many patients were also relieved and validated to be diagnosed. This often led to a change where long and confusing processes for diagnosis became peace of mind related to their symptoms.

Social life and negative health interactions

Social life and intimate relationships were often impeded because of patients having to cancel plans and interrupt important events following endometriosis symptoms. Mental and physical preparation were often needed to socially interact despite these hurdles. Pain sex also led women to lose a degree of intimacy in their relationships.

Emotional and mental well-being were also highlighted. Participants with endometriosis reported feeling fear, depression, and hopelessness because of the condition. Having to plan life around upcoming periods led to frustration, depression, and feeling left out. Feelings of loneliness were also highlighted by patients who had to manage symptoms alone.

These issues were exacerbated by negative health care experiences. Participants reported having their symptoms minimized by health care providers, presenting for care multiple times with no resolution, and being told their needs did not rise to a level of concern for action. This led to feelings of disappointment, even after diagnosis.

Implications

This data provides additional insight into Black women’s experience with endometriosis in the United States. Investigators recommended additional research to inform future clinical practice.

“Notably, this study’s findings echo Black women’s experiences across reproductive health care contexts… thus underscoring the urgency of addressing the multilevel manifestations of structures of racism and oppression on Black women’s sexual and reproductive health,” wrote investigators.

References

1. Rice WS, Dakwa M, Filippa S, Parikh A. Narasimhan S. "It's like your body is fighting against you": a cross-sectional qualitative interview study of quality of life in U.S. Black women diagnosed with endometriosis. BMC Women’s Health. 2025;25:401. doi:10.1186/s12905-025-03942-6
2. Al-Lami RA, Taha SA, Jalloul RJ, Taylor HS. Women with endometriosis in the United States: National survey of family growth, 2011–2019. J Endometr Uterine Disorders. 2024;8:100081.