Understanding the gynecological health crisis facing Black women

FLORA LICHTMAN: Hey, this is Flora, and you’re listening to Science Friday. Black women are twice as likely to die from uterine cancer compared to white women and also suffer disproportionately from other uterine-related conditions. Dr. Kemi Doll learned these facts in medical school, but no one could explain why. Now a gynecologic oncologist, Kemi has made it her mission to change these trends and improve care for Black women.

Dr. Kemi Doll is a professor at the University of Washington School of Medicine and School of Public Health, and the author of the new book, A Terrible Strength– The Hidden Crisis of the Black Womb and Your Survival Guide to Healing. Kemi, thanks for being here.

FLORA LICHTMAN: Thank you so much for having me. Talk to me about the title. What is a terrible strength?

KEMI DOLL: Yeah, the title is very intentional. I mean, I think that it’s unusual for us to hear those two words together– terrible and strength. But to me, a terrible strength is this inherited true, powerful ability to endure and to be resilient and to be successful in a society that is not built for you, that Black women have, that has been passed down by our mothers to us, and that we use to navigate our society. And it is strong, and I think that’s important. But this strength is terrible because that same ability to endure means that we’re not seen as vulnerable to these gynecologic diseases and conditions that can end up creating horrible quality of life and ultimately take our lives in the form of uterine cancer.

And so, that’s what it means to me is that I want to honor the strength that’s there. It’s real. But we need to recognize, I should say, that it has a consequence in this world of womb health and gynecology that is profound and that really must change.

FLORA LICHTMAN: Let’s talk about those consequences. I mean, how does this play out when patients come to see you?

KEMI DOLL: Yeah, this plays out in a few ways. I think one of the ways it plays out is that sometimes my Black women patients don’t really identify what they’re going through as a problem because they have learned for so long to normalize very severe symptoms.

So I saw a woman who came in for a regular pap smear, and she described her menstrual cycles or her periods to me. It sounded like way too much bleeding to me. And we got her labs, and her hemoglobin level was 4, which from an anemia standpoint is literally life-threatening. And she was walking around, just coming in for a routine visit.

It’s in the form of women thinking that it is normal to be basically incapacitated by their cycle. I don’t mean just mild cramping here and there, but essentially unable to work, unable to do their regular activities because the pain is so great. So one way it shows up is just in that normalization, which means that in the doctor’s office, if you’re waiting for a Black woman to share with you that these are the problems I’m having and this is a problem, you might be missing women that are suffering right in front of you because they have been taught to endure.

Another way it shows up is that unfortunately, and I can say this as a Black woman because I’ve experienced this, even when we do get to the point where we say, hey, I am bleeding too much, or my pain is too much, or there’s something wrong, quote-unquote, “down there,” we’re often either met with misdiagnosis because of the bias around having STDs, pelvic inflammatory disease, things that are more coded in terms of hypersexuality, or we are dismissed as not being sick enough or not being in pain enough to really need help. So it’s really quite a powerful combination of both learning to endure and normalize severe symptoms that meets up with a medical system that’s really biased against seeing you as vulnerable and in need help.

FLORA LICHTMAN: How have you changed your approach as a physician or have you?

KEMI DOLL: Yeah, so I’m not practicing anymore because my career is now completely devoted to my research and my research lab. But I will say I started changing my practice when I was in training. I remember being a resident. And I remember thinking the standard way we ask questions, which is do you have any problems with your cycles, is not getting at the issue. That is not really meeting the moment in terms of Black women who are going to have a higher threshold for reporting problems when you know that might not receive help.

So I started asking questions differently. I would ask things like, how many days a month do you not bleed? That is a different kind of question. So when the answer is 6, now I’m concerned in a different way. And if I ask that same person, do you have any problems with your period, they might say no because that’s normal for them.

Another way is a lot of times fibroids are not really dealt with or treated until they’re quite severely symptomatic in all women, but especially in Black women. And so noticing what your patients are wearing and instead of assuming that they’re fibroids are asymptomatic, I would notice, you’re wearing elastic pants, the drawstring, like elastic pants. Have you changed your clothing recently? Are you making these adjustments and you find out somebody’s wearing maternity clothes because they’re fibroids are getting to that size and that’s what fits them well?

I can’t emphasize enough how much in gynecology, especially, so much of our care is driven by a woman or a patient reporting that something is wrong. We have some lab tests. We have some screening, but a lot is specifically in the field of gynecology.

A lot of it is driven by the patient saying, I have this bleeding, or I have this cramping. Or my cycle is not regular anymore. And when that’s the case, the power or the emphasis or the importance of that conversation between the patient and the physician and therefore the respect and whether or not that patient is legible, her pain is legible, her issues are legible to the doctor, is a huge fork in the road in terms of whether or not she’s going to be helped.

The other area does have to do with medical testing, which is an area of my research, because another way that this plays out in terms of how did we even get here with black women being twice as likely to die of uterine cancer was basically the motivating question behind my research program. And what we first found is that actually, in contrast to the standard message of the field in about 2015, around that time, was Black women just have more aggressive uterine cancer. And so that’s why they have more advanced stage of diagnosis, and that’s why they die. And that was the beginning and the end of the story. And what we found is that–

FLORA LICHTMAN: Which is basically like they just do.

KEMI DOLL: Yeah, I mean, it’s basically like black women’s bodies are broken. Inherently, there’s just something wrong with you. So we found that wasn’t true, and that at least 40% of the disparities or the difference between mortality was actually driven by Black women being diagnosed at later stages. And that really had me asking a lot of these questions that we’ve been talking about. But one area that hadn’t been explored is how do we even diagnose uterine cancer? How does that work?

I mentioned earlier that the cardinal symptom is post-menopausal bleeding. What we do with that is that we have a clinical algorithm that says when somebody comes in with postmenopausal bleeding, they have a transvaginal ultrasound. So you give them an ultrasound, and based on the thickness of the measurement of their endometrial lining, which is essentially the thin layer that lines the inner cavity of the uterus, you can measure that layer. And if it’s under 4 millimeters, then they have essentially no chance of having a uterine cancer. And if it is that case, then you don’t need to do a biopsy. You don’t need to do any further workup.

Well, it turns out that guideline, which was practice guidelines, was based on research that did not include Black women, and often did not even include women with fibroids. So what we found is that that threshold significantly underperforms in Black women, meaning that there are more false negatives in Black women using that threshold. Our research of over nearly 3,500 women demonstrated that 10% of Black women with uterine cancer were missed by that threshold.

So if you start to think about all the things that are lining up– first the woman has to detect, OK, this bleeding is bad enough that I’m going to go in, even though usually it’s painless. So it might take a while for that to happen. Then the doctor has to see that symptom as a problem, and as difficult, and as something that needs to be investigated. Then they go get the ultrasound test, and the clinical guidelines tell us she’s fine.

And you start to see how we have stacked the deck against Black women when it comes to uterine cancer, which is a fast-rising cancer in this country. And so my practice changed to always doing not just an ultrasound, but a biopsy on women who showed up with post-menopausal bleeding. And very recently, literally like within the last month, after many years of research and many studies, the American College of Obstetricians and Gynecologists have just updated the clinical guidelines to also represent this issue and to include biopsy as an early part of the workup.

FLORA LICHTMAN: We have to take a break, but when we come back, I want to ask you about how we talk about this, whether the language matters.

KEMI DOLL: Yes.

FLORA LICHTMAN: Stay with us. Are you down for that?

KEMI DOLL: Yes, that sounds great.

[MUSIC PLAYING]

I think for a lot of people, uterine health is equated automatically with reproductive health. Does that complicate care?

KEMI DOLL: Yes. It complicates care because– oh, I mean, honestly, I would say because of misogyny, but let’s unpack that. So it complicates care because, one, a lot of people think of uterine health as equal to reproductive health. And so, therefore, uterine health is do I have the right contraception if I need it?

Do I have a sexually transmitted infection or disease, and/or am I pregnant or trying to get pregnant? If all those answers are no, there is nothing. I don’t have any uterine health issues, concerns, questions. It’s like it doesn’t exist.

And that is wild when you think about the field of gynecology and that the conditions that we treat are lifelong, usually conditions that are endometriosis, fibroids, heavy bleeding. These are things that last a lifetime. They require usually kind of chronic care management to help people with them. So we need to open up our conversation about these organs in terms of the health over the lifetime. And because I’m an oncologist, I have to again say, and also it leaves us very vulnerable to these gynecologic cancers that tend to happen later in life, when a lot of women and people with a uterus have stopped seeing a gynecologist because they’re not getting pregnant anymore, or maybe they’re post-menopausal. And the idea is essentially like, there’s nothing down there.

FLORA LICHTMAN: I mean, it seems like there’s a similar issue with birth control, which I know can be used to treat other conditions besides keeping you from having a baby. But the way we talk about it, it’s like an off-label use. And if you don’t want to be on birth control, you might want to not want to take it.

KEMI DOLL: Flora, this drives me crazy. Yes, you are very right. And I absolutely think my field too in gynecology, we have really misstepped in this way too, because I think a lot of people will tell you. Yeah, my gynecologist said, oh, we’ll just try birth control.

The issue is very profound, however, because when everything is through the lens of again, reproduction, birth control, it does make it feel I’m having some issue. How come the only treatment you have for me is thoughts, prayers, and birth control pills? Why is that always the answer? And I am like I get that.

That’s the experience. But it’s also because we have become a little lazy. Birth control represents hundreds of different formulations, different types of the hormones themselves that we know have different effects in the body. And not only that, we have many trials and studies specifically studying these different types of formulations and how they improve things like dysmenorrhea, which is painful periods, how they do or don’t improve the volume of blood loss during a period.

There’s a class of medications that I think are better called endometrial stabilizers, because that’s what they’re doing. They’re stabilizing the endometrium so you don’t hemorrhage every month. So if you’re in a conversation with a physician and they say, I agree, you’re bleeding too much. You’re anemic. This is crazy.

Let’s put you on an endometrial stabilizer. By the way, as a side effect, you likely won’t be able to get pregnant while you’re on this medication. It will likely have a contraceptive effect. That is a very different feeling to that patient than here’s some birth control. Let’s see if this works.

FLORA LICHTMAN: Completely. OK. Where do we go from here, Kemi? What’s the path forward?

KEMI DOLL: OK. So the path forward– a few things. And this is for everybody listening, including the physicians, everybody listening.

Number one is we’ve got to break the silence. We have got to recognize that when I say silence, I really don’t just mean maybe a mother didn’t tell her daughter about cramping and bleeding and pain and just gave her some pads. And I mean, culturally, we have a silencing around gynecologic conditions and actual symptoms like bleeding and pain and cramping and things like that that we need to remove. I would like us to be able to talk about period pain and cramping the same way we talk about chest pain. It’s a symptom that needs to be treated.

Number two, we all need to what our normal is. So then we can figure out whether or not we are just enduring and suffering for no reason. Or we are fine, but we have now a baseline for when things change.

Number three, I need for us to have some womb sisters accountability is what I call it. And I just want to take a moment to explain what I mean, because as a gynecologist and a gynecologic oncologist, I cannot tell you how many times I saw a woman in the office. And she would tell me something, or she would tell me about what she’s going through. And she had not told another soul. Nobody knew. And this cannot stand.

I mean, in some ways, I think it’s the last place where we accept this kind of suffering as women, honestly. And I want us to be in a place where all your girlfriends don’t need to everything that’s going on with you, but you got to have at least one or two womb sisters that I call it, that you can really tell, this is what’s going on with me. And will you come to my visit with me? Will you hold me accountable to making sure I follow up on this because I don’t have to live like this?

And then, lastly, I think that we all need to recognize that there is no assault on reproductive freedom and reproductive health care that is siloed and will not impact our ability to provide care for the womb throughout its entire life course. When you restrict medications that have the sense of oh, well, this is for abortion or this is plan B or whatever, you are restricting the same classes of medications that we use to treat these conditions. And you are making it harder for gynecologists to practice, period. So I think we all need to understand that the fight for reproductive rights and reproductive health care impacts every single person with a uterus, regardless of whether you want to have kids, don’t want to have kids, regardless. So yeah.

FLORA LICHTMAN: Kemi Doll, thank you for being here.

KEMI DOLL: Thank you so much.

FLORA LICHTMAN: Dr. Kemi Doll, gynecologic oncologist and Professor at the University of Washington School of Medicine and School of Public Health, and author of the new book, A Terrible Strength– The Hidden Crisis of the Black Womb and Your Survival Guide to Healing. Thanks again.

KEMI DOLL: Yeah, this was great. Thank you so much.

FLORA LICHTMAN: This episode was produced by Shoshannah Bucksbaum, and we want to hear from you. If you have questions or comments or thoughts for us, please call us 877-4-SCIFRI is our number. I’m Flora Lichtman. We’ll catch you tomorrow.

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