Three-quarters of women with endometriosis have been misdiagnosed. For many, each menstrual cycle is a painful disruption to daily life. Endometriosis is difficult to diagnose. The burden is even heavier for Black women, who have a higher risk of infertility.
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March is Endometriosis Awareness Month, and The Root spoke to an expert about the condition and the barriers to proper diagnosis and care, especially for Black women.
What is Endometriosis?
Dr. Dawan Gunter, Executive Medical Director of NC OBGYN and Midwifery at UNC Health, said endometriosis is a chronic, often debilitating condition in which endometrial tissue grows outside the uterus, sometimes attaching to other organs.
During each menstrual cycle, from the first day of bleeding until the start of the next period, this tissue responds to hormones and bleeds just like the uterine lining. Endometriosis lesions can cause inflammation, internal scarring and severe pain. Over time, it may affect fertility. Many women learn they have endometriosis only when they struggle to conceive. According to the American Medical Association, menopause doesn’t necessarily end the condition.
Up to 18 percent of women in the United States are affected by endometriosis, according to the Resistant Sisterhood Project. Endometriosis can cause disabling pain that interferes with school, work and daily life. Sometimes, it leads to frequent emergency department visits, Gunter shared.
Endometriosis is usually found in organs near the uterus, such as the pelvis, fallopian tubes and ovaries. However, Gunter noted doctors have also found it in almost any organ, including the lungs and brain, and even in surgical scars.
Symptoms may include painful periods, chronic pelvic pain, lower back pain, thigh cramps, and pain during sex, urination or bowel movements, Gunter said. Treatments depend on severity and range from hormonal therapies, such as birth control, to laparoscopic surgery to remove or destroy endometrial lesions.
Racial Bias and Barriers to Care
Despite growing awareness of the condition, research shows the medical community has maintained a myth about who gets endometriosis, shaping who’s diagnosed. “For years, people were taught that endometriosis is a disease of upper-class white women, and that has been perpetuated,” Gunter said. He noted that the misconception can lead to symptoms being overlooked or dismissed in Black women, contributing to diagnosis delays.
Gunter also pointed out that Black women with endometriosis have a frequent misdiagnosis: “Up to 40 percent of the time, Black women with endometriosis can be diagnosed with pelvic inflammatory disease, which is most commonly caused by STDs,” Gunter explained. “So it can cause very negative stigma.”
Bias in how pain is perceived can also influence care. Black patients’ pain complaints are often dismissed as “pain medication seeking behavior.” A 2016 study highlighted pain bias and found that half of white medical trainees believed Black patients felt less pain than white patients.
While medical bias presents barriers to proper care, generational messaging that normalizes pain may also play a role. “I wonder if Black women have been led to believe that periods have to be horribly painful,” Gunter said. “It’s not normal to be stuck in the bedroom during your period. It’s not normal to be unable to go to class during your menstrual cycle. It’s not normal to be unable to play sports during your menstrual cycle.”
He added that the higher prevalence of fibroids among Black women can complicate diagnosis. Sometimes, pain is attributed to fibroids instead of endometriosis, or to a combination of both. More than 80 percent of Black women develop uterine fibroid tumors by age 50.
In complex cases, patients may be referred to pelvic pain specialists. However, Gunter noted Black women may be less likely to receive those referrals. “I think it’s just implicit bias,” he said.
Advocating For Better Care
For women who feel their symptoms aren’t being taken seriously, Gunter says self-advocacy is critical. “If 800 milligrams of Motrin every 8 hours is not controlling your pain during menstrual cycles, then we need to look for something else,” he said. “That is not right.”
Gunter encourages women to talk to their OBGYN if something feels wrong. If endometriosis is suspected in teenagers, parents can ask for a referral to a pediatric OBGYN. Patients should also ask providers if they have experience treating endometriosis or if a specialist referral is appropriate.
Most importantly, women should not suffer in silence or assume extreme pain is simply part of their cycle. While endometriosis is a leading cause of infertility, it’s treatable and women can go on to have healthy pregnancies.
Gunter emphasized that endometriosis can often be managed with hormonal treatments, not just surgery. “It doesn’t have to be a life sentence.”
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