Believing Every Pain: Why Race Still Matters in Endometriosis Diagnosis
Endometriosis affects around one in ten people who menstruate, yet not everyone receives a diagnosis equally. Research has shown that race and ethnicity can influence who gets diagnosed, how symptoms are perceived, and how care is delivered. Two major studies led by Dr. Olga Bougie and her colleagues explored this issue in depth, revealing how history, bias, and access to care continue to shape outcomes for many patients, particularly Black women.
In 2019, Dr. Bougie and her team published a systematic review and meta-analysis that brought together data from 18 studies examining how endometriosis is diagnosed across different racial and ethnic groups. Their findings were striking. Black women were less likely to be diagnosed with endometriosis than White women, while Asian women were more likely to receive a diagnosis.
Importantly, these findings do not mean that Black women are less likely to have endometriosis. Instead, they highlight that Black women are diagnosed less often. This gap likely reflects a mix of historical bias, inconsistent definitions of race and ethnicity across research, and unequal access to healthcare. For many years, medical education reinforced the belief that endometriosis was a “White woman’s disease,” often associated with women who delayed childbirth. This assumption shaped how doctors were trained, how research was designed, and which patients were believed when they described pain.
As a result, Black women and other racialized groups have faced systemic barriers to diagnosis. They are less likely to be referred for laparoscopic procedures, more likely to have their pain dismissed or misattributed, and often excluded from the data that defines how the disease is understood. The 2019 study also pointed out that many of the terms used to categorize race and ethnicity in earlier research were oversimplified, grouping together diverse populations and ignoring how culture, language, and socioeconomic background influence healthcare experiences.
In 2022, Dr. Bougie collaborated with researchers Dr. Ikunna Nwosu and Dr. Chelsie Warshafsky to revisit the impact of race and ethnicity in endometriosis research and care. Their review revealed that the same patterns persist across generations of medical education and practice. Textbooks still describe endometriosis as more common among White women, while healthcare providers may unconsciously hold biases that affect how they interpret pain in non-White patients. This includes the harmful stereotype that Black patients have a higher pain threshold, which continues to influence treatment decisions today.
The researchers also highlighted that disparities in diagnosis reflect more than just bias in perception. They are tied to structural barriers such as lack of access to laparoscopy, limited awareness, and differences in healthcare infrastructure. For example, endometriosis remains one of the most common reasons African American women undergo gynecological surgery, despite the widespread belief that they are less likely to have the disease. Meanwhile, studies show lower diagnosis rates among African-Indigenous women compared to African American women, suggesting that geography, resources, and cultural stigma all play a role.
When pain is dismissed or misunderstood, people lose years to untreated symptoms that impact their fertility, mental health, and quality of life. These experiences also skew research data, leading to ongoing underrepresentation of non-White patients in studies and reinforcing the false belief that endometriosis looks or behaves differently based on race. The truth is that the disease does not discriminate, but the healthcare system often does.
To move forward, healthcare providers need to consider endometriosis as a potential diagnosis for all patients presenting with pelvic pain or infertility, regardless of race. Improving education on racial bias and pain, increasing access to culturally sensitive care, and ensuring better representation in research are all key steps toward equity.
Endometriosis has long been seen through a biased lens, and that bias has shaped both medical understanding and patient experience. Change starts with how we talk about it, teach it, and research it. Recognizing that every person’s pain deserves to be believed and investigated equally is not just good medicine, it is justice.
Research by Mehreen Rashid
References:
Bougie O, Yap MI, Sikora L, Flaxman T, Singh S.2019b Influence of race/ethnicity on prevalence and presentation of endometriosis: a systematic review and meta-analysis. BJOG 1261104–1115. ( 10.1111/1471-0528.15692)
Bougie O, Nwosu I, Warshafsky C. Revisiting the impact of race/ethnicity in endometriosis. Reproduction and Fertility. 2022;3:R34-R41