How Race Affects Diagnosis and Treatment of Endometriosis

Endometriosis affects around 176 million women worldwide. It causes painful periods and greatly impacts quality of life. Worldwide, 1 in 10 women develops endometriosis.^1,3 But, what is the role of race and ethnicity?!

Race and diagnosis: what the research shows

For decades, endometriosis has been thought of as "a White woman’s disease". However, doctors now know that race and ethnicity play a large role in whether a woman develops endometriosis, and how long it takes to get a correct diagnosis, and treatment. For example:^2,4

• Black women are less likely to be diagnosed with endometriosis than White women
• Asian women are most likely to be diagnosed with endometriosis than any other racial group
• Hispanic women were less likely to be diagnosed with endometriosis than White women

Women with endometriosis may experience chronic pain, fertility problems, and overall challenges in quality of life. It can impact bowel, urinary, sexual, and reproductive function; These symptoms can affect the physical, psychological, and social well-being of women with endo.¹

Race can influence a diagnosis

It takes an average of 7 to 10 years after symptoms begin to get a diagnosis of endometriosis. Women with endometriosis are often misdiagnosed or receive poor medical care for a long time.¹

Research suggests that race plays a role in misdiagnosis. Historically, many doctors once believed that White and Asian women got endometriosis and Black women did not.^1-4

Asian women were more than 50 percent more likely to be diagnosed with endometriosis than White women, according to a 2019 study. In this same study, Black, African American, and Hispanic women were half as likely to be diagnosed as White women. This may be due to high costs, a lack of health insurance, or access to quality care.^1,2,4

Also, women of different backgrounds may go to the doctor with symptoms which may not be recognized as or believed to be endometriosis. In some populations, complaints of chronic severe pain are taken for granted.

Improvements in diagnosis and treatment could be achieved if doctors became more culturally aware; Understanding patient identities and knowing what to look for could help people from different ethnic backgrounds get better care.^1,2

Correcting misconceptions and bias

Many healthcare providers were educated based on the idea that an endometriosis diagnosis is less likely in Black women. For example, a 1951 study suggested that Black women rarely got endometriosis due to genetic factors. As a result, racial bias has influenced both diagnosis and endometriosis care in the African American community.²

Thanks to more recent research, doctors now believe that race/ethnicity may play a role in how severe someone’s endometriosis is. One study found that Asian women are more likely to be diagnosed with advanced (stage III/IV) endometriosis compared to White women.¹ And, unsurprisingly, results found that Black women do develop endometriosis, though at a lower rate than other ethnic groups.

Genetic and environmental factors are now being considered in new endometriosis research. The hope is that new information will reduce the bias and racial disparity still present in the diagnosis and treatment of endometriosis.² Better understanding of the roles that race and ethnicity do, or do not, play in endometriosis could help change the way women with the condition are treated.⁴