Racial disparities associated with the diagnosis of 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 one of your primary objectives.

Soini Hawkins, MD, MPH, FACOG: Endometriosis is a condition that is usually associated with pain in a very specific way, with menstruation. It is a discussion that is considered below the belt. Many women don’t even understand what is normal and abnormal. On top of that, when they go to their doctor’s office, the doctor may not believe they are in enough pain to warrant further investigation. It lasts 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 is certainly a disparity on the front of getting the diagnosis.

This results in diagnosis at a later stage of the disease. Endometriosis can be extremely invasive. If they are sent to me, it means a more complex procedure. I do it laparoscopically, which could compromise things… like their fertility. There is certainly a cascade in the disparities we have when diagnosing black and Hispanic women, who are considered less susceptible when it comes to the incidence of endometriosis. It is simply not true. Asian American women are more likely to be diagnosed with endometriosis than white women. But if there is a bad education in this population, they also receive [diagnosis] to a later pathological condition. So there is a lot of work to be done on the front-end. Once we get to the point where we are referring them and attracting them even into communities where they may not have access to specialists, we will start to see improvements. Endometriosis is extremely invasive. This can be extremely destructive for women.

Sharon Deans, MD, MPH, MBA: This forces us to switch to partiality. When you look at the historical literature, endometriosis was a disease of upper-class white women because it was thought to delay childbirth. It is one of the risk factors for endometriosis. Historically, this disease was associated with upper-class white women, and poorer women did not have this problem. Also, when you meet a woman of color who is in pain, there is a disparity in the interpretation of her pain. The idea is that black women have a higher pain threshold and that their pain is related to infection and not necessarily organic disease. We return to education to help raise awareness.

As we move through the discussion and get to maternal and child health outcomes, we’ll see how important bias is and how important it is to educate individuals about unconscious bias. and to increase their awareness of how they approach members based on what they have learned and what they believe. I was appalled a few years ago when I realized that ACOG [American College of Obstetricians and Gynecologists] had a different hemoglobin for transfusion for black women compared to white women for obstetric hemorrhage, which is completely unfounded. I had never noticed it. It was like the bible to me when I practiced. I never noticed it because I treated patients based on what I saw. Much of this bias has been ingrained in our literature, and it is being uncovered now. But the most important thing is that individuals have training in biases in clinical practice. It is extremely important.

Derek van Amerongen, MD, MS: Doctor Wells?

Roxie Cannon Wells, MD: I definitely agree. This training should take place in medical school. This should happen very soon. Studies have shown that residents process pain differently for black women compared to white women because they believe the pain threshold is higher. These women tended to suffer more. This education must begin very early. Not during residency, not once they became attending physicians, but in medical schools across the country. This is where we begin to break down those biases and help individuals understand that the need is to treat what you see, not what you don’t see. This is a very important point.

Sharon Deans, MD, MPH, MBA: And it must be repetitive. I used to do a show at NYU [New York University Grossman School of Medicine] on racism and sexism in medicine. I did it over a period of 2 to 3 years. When I finished I was talking about obesity and how people are treated differently because they are obese. It’s not acceptable. We must have it in the forefront of our minds. It should start early and be repetitive, like your annual HIPAA [Health Insurance Portability and Accountability Act of 1996] training you need to take – to monitor your biases and increase your awareness so you can control yourself as you go. We do it every day, all day. We look at the patients and put them in a box.

Roxie Cannon Wells, MD: Absolutely. One thing that stands out is sickle cell patients and how we deal with pain with these people. I can talk about sickle cell patients in this context because some of them are women. Some of them are expecting mothers. We need to think about this. Not only is this the pain threshold, but is this drug-seeking behavior? I have repeatedly heard people make assumptions that black women seek painkillers for euphoria and not to treat actual pain.

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

Transcript edited for clarity.