Why Is It So Hard for Black Women to Get Diagnosed with Endometriosis?

Affecting roughly 11 percent of American women, endometriosis is one of the most common reproductive health concerns. Yet, getting diagnosed with the pelvic disorder is no easy task, and the process can take anywhere from four to 11 years, according to an article published in the American Journal of Obstetrics and Gynecology.

For Black women, though, the journey to find answers can be even longer and more arduous — so much so, that research shows that, compared to their white counterparts, Black women are less likely to be diagnosed with endometriosis overall — and that's NOT because they are less likely to have it. Rather, social factors, such as implicit bias and institutional racism, make it difficult for BIPOC women to get the treatment they need, says Nyia Noel, M.D., assistant professor of medicine in the department of obstetrics and gynecology at Boston University School of Medicine — even when they have the same symptoms as white women.

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"It goes back to the medical fields' misperception of pain tolerance in Black women," says Dr. Noel. "[Pain] is something that's often mismanaged and misdiagnosed in Black communities." Those misconceptions often translate to how women of different races, with the same symptoms, are diagnosed and treated differently.

What Is Endometriosis?

Endometriosis, or endo, is a painful condition wherein tissue that's similar to the lining of the uterus (the endometrium) grows in other places of your body, most commonly on the ovaries, on the fallopian tubes, behind the uterus, or on the bowels or bladder, according to the Office of Women's Health. The cause of endo is still unknown, but symptoms include painful or heavy periods, pain during sex, infertility, issues with bowel movements, pain with urination, and chronic fatigue. (Related: What It's Like to Battle Endometriosis, Freeze Your Eggs, and Face Infertility At 28 Years Old — and Single)

Like the uterine lining, this tissue is also impacted by hormone fluctuations, breaking down and bleeding every month during your period. But because of its location, the shedding cells and blood cannot easily get out of your body, thereby leading to a build-up of scar tissue and inflammation that can cause intense pain and cramps, according to the OWH.

Why Black Women Struggle to Get Diagnosed 

Reports show that most women with endo begin to experience symptoms around puberty, and most don't get diagnosed until much later — roughly seven years from their first symptom. Some women may assume it's common to experience painful periods, explains Dr. Noel, or that always needing a heating pad for pain management is normal, so they may neglect all the telltale signs of endometriosis. Once a doctor suspects it's endometriosis — after analyzing a woman's menstrual history, performing pelvic exams and ultrasounds — a laparoscopic procedure can definitively diagnose the condition.

The earlier it is identified, the quicker a treatment plan, ranging from hormonal birth control to more surgery, can be put into place. This can also prevent the disease from progressing to the point of infertility or needing a hysterectomy (aka removal of the uterus). And this is where Black women are often at a disadvantage, explains Sharan Abdul-Rahman, M.D., M.B.A., an ob-gyn and owner of Today's Woman, a gynecological clinic in Philadelphia. "Endometriosis was considered primarily a disease of affluent white women," she notes. "The thought that a Black woman could have endometriosis was almost unheard of." (Related: Are American Women Having Unnecessary Hysterectomies?)

Until recently (due in part to increased attention on racial inequality in health care), doctors would be more likely to connect a Black woman's pelvic pain to pelvic inflammatory disorder (PID) — an infection of a woman's reproductive organs usually caused by sexually transmitted bacteria (such as gonorrhea or chlamydia), according to the Mayo Clinic — rather than endo. "[This] speaks to what we know to be true: [There's] racism in medicine," says Diana Atashroo, M.D., an ob-gyn and clinical assistant professor of obstetrics and gynecology at Stanford University. And it's just one of the many potential reasons Black women often go misdiagnosed or undiagnosed.

There's a long-held (inaccurate) belief that Black men and women are more tolerant to pain, which, in turn, can inhibit diagnosis and necessary treatment.

It's also possible that a patient's endo symptoms are mistaken for those of uterine fibroids (noncancerous growths in or on the uterus), which disproportionately impact African American women. A recent report found that because symptoms of fibroids — especially pelvic pain — are similar to that of endometriosis, diagnosing endo can be particularly difficult for women, and more so for African American women. What's more, endometriosis is commonly found in combination with other chronic pain disorders, including uterine fibroids, says Dr. Noel. And that's why she encourages women to seek medical attention once symptoms are present, adding that early and accurate diagnosis is even more important for Black women.

Socioeconomic Disparities

Women from lower socioeconomic backgrounds often lack resources and access to care, which can be a barrier to early diagnosis and treatment, says Dr. Atashroo. For example, the laparoscopic procedure needed to definitively diagnose endo may not be covered by certain health insurances, such as Medicaid, adds Dr. Abdul-Rahman. (Without insurance, costs can be super high: a recent Endometriosis in America Survey found that the average out-of-pocket cost for laparoscopy was $4,923.) And if that's the case, a Black woman (or anyone for that matter) might be that much more discouraged from seeking out care, especially since a study from the Centers for Disease Control and Prevention found that African American adults are more likely to cite "cost" as a reason for not seeing a doctor for a chronic condition compared to white adults.

This is not to say middle-class Black women are not at risk of going undiagnosed. In fact, reports show that Black women tend to bring up their symptoms with a doctor only to be dismissed as having a heavy or painful flow. Some doctors will neglect the severity of the pain altogether and refuse to perform a laparoscopic procedure to determine if the woman actually has endo. As Dr. Noel mentioned earlier, there's a long-held (inaccurate) belief that Black men and women are more tolerant to pain, which, in turn, can inhibit diagnosis and necessary treatment.

And there's location. A 2014 report produced by the Pittsburgh Post-Gazette and Milwaukee Journal Sentinel examined how more hospitals and doctors are fleeing low-income neighborhoods for more affluent areas and found that racism — which can lead to poor communities and limited access to health care — is a key hindrance to adequate diagnosis and treatment for minorities. 

Point being: "Social determinants of health such as income, wealth, educational, and employment opportunities have effects on health outcomes," says Dr. Atashroo. "These inequities play a significant [role] in the use and trends of endometriosis-related medical services and prescriptions, especially in patients that have public versus private insurance."

Lack of Representation

Where are all the Black doctors, let alone Black gynecologists? Seriously, though. With minimal racial diversity, the medical field continues to be mostly white and male — and that's a big problem for so many reasons.

"There's data that shows [outcomes] are better when providers are the same racial backgrounds as their patients," says Dr. Noel. And yet, unfortunately, Black female doctors make up less than 3 percent of all U.S. doctors. Finding a practitioner with whom you feel comfortable? Not so easy for Black women. What's more, there's also little-to-no women of color included in medical research or clinical trials on the racial and ethnic disparities in endometriosis, making it that much harder to know how the condition manifests in a Black woman vs. her white counterpart. Nevermind the fact that the condition overall hasn't been studied thoroughly, notes Dr. Noel.

"Researching diseases that impact women, and women of color, in general, are under-funded and under-researched, and endometriosis is no exception," she adds. If Black women are not represented in the medical field or part of most clinical trials, the harder it'd be for them to be diagnosed with endo correctly.

Medical Racism and Implicit Bias

"Structural racism permeates and impacts all health care that's given to people of color and Black people," says Dr. Noel. This extends to diseases such as endometriosis in Black women.

Meaning, systemic oppression, the resulting impacts of structural racism, and factors such as where Black women live can determine how much a woman would be willing to share with her doctor, especially when that doctor is white. "Researching your provider [and] developing a relationship with your doctor can help," adds Dr. Noel. "Finding a doctor you're comfortable with, maybe who looks like you, is really important." Implicit bias from white doctors toward people of color, a report found, may impact how accurately Black women are properly diagnosed and believed, generally, by white doctors. (Related: Black Nutritionists to Follow for Recipes, Healthy Eating Tips, and More)

Because of this, reports found that Black women aren't taken as seriously by medical professionals when it comes to pain, let alone getting an accurate diagnosis. "Providers are too paternalistic in making medical decisions for their patients," says Dr. Atashroo, and often fail to involve them in the decision-making, which would empower them to be involved in their health care management. When doctors listen and allow Black women to voice concerns and be part of their care process, this empowers them to feel in control of their treatment, care, and their bodies. Unfortunately, however, given the current makeup of the medical industry, this is not the case, according to research. And this may turn Black women away from even voicing their pain to begin with, for fear of not being understood or taken seriously.

But, given this past year, with increasing calls for equity throughout different institutions, "there's a heightened sensitivity now about racial health care disparities in this country," says Dr. Abdul-Rahman. "People are starting to openly acknowledge that there is systemic racism within medicine that we see on the practitioner level. Being aware of that, we should always advocate for ourselves."

With this recent awareness of equity and social justice in medicine, it's more important now for Black women to start speaking up from themselves when they suspect they may have endometriosis.

Historically, endometriosis has not been considered a Black disease. When there was a white woman who had pelvic pain and infertility, she was diagnosed with having endometriosis. But if you had a Black woman with pelvic pain and infertility, she was usually diagnosed with pelvic inflammatory disease.

—Sharan Abdul-Rahman, M.D., M.B.A.

Be Your Own Advocate

There's no denying it: A doctor should have your back and everyone should have access to affordable and adequate health care. Unfortunately, this is not the current reality. So, while society gets its act together, you may have to take your health care into your own hands.

Black women should be proactive and bring up their concerns about endo if they've experienced some of the telltale symptoms. "You have to trust your body," says Dr. Abdul-Rahman. "If you're being prescribed something and it's not working, don't accept it. Ask for more evaluation." Begin tracking your symptoms once you suspect any abnormalities in your cycle or how your body is functioning: bowel movements, infertility, chronic pain, or if sex becomes painful. You should also bring someone you trust with you to your appointments. They can support and serve as an added advocate.

But the most important way to self-advocate is to have the right care. If your current doctor is not being sensitive to your pain or rushing you out of the examination room once you've shared your concerns, then that's probably not the doctor for you, notes Dr. Abdul-Rahman. "Black women [tend] feel they are better seen and better heard when they see a doctor of their hue. And I think whenever possible, they should seek that out," adds Dr. Abdul-Rahman. How, exactly? A good place to start is EndoFund's endometriosis portal for women of color, which you can access online. From finding an endometriosis specialist to resources that can help you prepare for your first doctor visit, the site also raises awareness and money for advancing the research of endometriosis in women, with special attention to women from marginalized backgrounds.