Racial Disparities Associated With Endometriosis Diagnosis

Soyini Hawkins, MD, MPH, FACOG, drives a conversation regarding the impact of race in diagnosing endometriosis.

Derek van Amerongen, MD, MS: Let’s pivot and ask about the racial disparities we see regarding the diagnosis of endometriosis. Dr Hawkins, this is 1 of your primary focuses.

Soyini Hawkins, MD, MPH, FACOG: Endometriosis is a state that is usually associated with pain in a very specific way, with menses. It’s a discussion that’s considered below the belt. A lot of women don’t even understand what’s normal and abnormal. On top of that, when they go to their doctor’s office, their doctor may not believe they’re in significant enough pain to warrant further investigation. This goes on for years. On average, a diagnosis of endometriosis takes 7 to 10 years. In Black and Hispanic women, it could take twice as long. There’s definitely a disparity on the front end of getting the diagnosis.

That translates into diagnosis at a later stage of disease. Endometriosis can be extremely invasive. If they’re sent to me, that means a more complex procedure. I’m doing it laparoscopically, which might jeopardize things…such as their fertility. There’s definitely a cascade in the disparities that we have when we diagnose Black and Hispanic women, who are thought to be less likely when it comes to incidence in endometriosis. That’s simply not true. Asian American women are more likely to be diagnosed with endometriosis than White women. But if there’s miseducation in that population, they’re also getting [diagnosis] at a later disease state. So there’s a lot of work to be done on the front end. Once we get to the point where we’re referring and getting them even in communities where they may not have access to specialists, we’ll start to see some improvements. Endometriosis is extremely invasive. It can be extremely destructive for women.

Sharon Deans, MD, MPH, MBA: That forces us to pivot toward bias. When you look at historical literature, endometriosis was a disease of White upper-class women because they were thought to delay childbirth. That’s 1 of the risk factors of endometriosis. Historically, this disease was associated with White upper-class women, and poorer women didn’t have this issue. In addition, when you get a woman of color who’s in pain, there’s a disparity in interpreting their pain. The thought is that Black women have a higher pain threshold and that their pain is related to infection and not necessarily to organic disease. We go back to providing education to help increase awareness.

As we progress in discussion and get to maternal child health outcomes, we’ll see how important bias is and how important it is to educate individuals about unconscious bias and increase their awareness of how they approach members based on what they’ve been taught and what they believe. I was aghast a few years ago when I recognized that ACOG [American College of Obstetricians and Gynecologists] had a different hemoglobin level for transfusion for Black women vs White women for obstetrical hemorrhage, which is completely unfounded. I’d never noticed it. That was like the bible to me when I was practicing. I never noticed it because I treated patients based on what I saw. A lot of this bias has been ingrained in our literature, and it’s being unroofed now. But the most important thing is for individuals to have bias training in clinical practice. It’s extremely important.

Derek van Amerongen, MD, MS: Dr Wells?

Roxie Cannon Wells, MD: I definitely agree. That training should occur in medical school. It should occur very early on. Studies have shown that residents treated pain differently for Black women as opposed to White women because they thought the pain threshold was higher. Those women tended to suffer more. That education needs to start very early. Not during residency, not once they become an attending doctor, but in medical schools across this country. That’s where we start to tear down those biases and help individuals understand that the need is to treat what you see, not what you don’t see. That’s a very important point.

Sharon Deans, MD, MPH, MBA: And it needs to be repetitive. I used to do a series at NYU [New York University Grossman School of Medicine] on racism and sexism in medicine. I did this over a 2- to 3-year period. By the time I finished, I was talking about obesity and how people are being treated differently because they’re obese. It’s not acceptable. We need to have it at the forefront of our mind. It should start early and be repetitive—like your annual HIPAA [Health Insurance Portability and Accountability Act of 1996] training that you have to do—to monitor your biases and increase your awareness so you can check yourself as you go. We do it every day, all day long. We glance at patients and put them in a box.

Roxie Cannon Wells, MD: Absolutely. One thing that stands out is patients with sickle cell disease and how we deal with pain with those individuals. I can talk about patients with sickle cell disease in this setting because some of them are women. Some of them are expecting mothers. We need to think about that. Not only is it the pain threshold, but is it drug-seeking behavior? I’ve heard many times individuals make assumptions that Black women are seeking pain medications for the euphoria and not to treat actual pain.

Derek van Amerongen, MD, MS: These are tremendously important topics.

Transcript edited for clarity.

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