Who's At Risk For Uterine Fibroids? Most Women

This episode explores the prevalence and impact of uterine fibroids, particularly among Black women, and discusses modern treatment options and historical context in gynecology.

1. Uterine fibroids are benign tumors that can cause significant health issues, including severe pain and fertility problems.
2. Black women are disproportionately affected by fibroids, experiencing higher prevalence and less adequate care.
3. Historical and ongoing racial biases in medicine complicate the diagnosis and treatment of fibroids in Black women.
4. New research suggests that managing blood pressure might help control the growth of fibroids.
5. Advocacy and education projects like the White Dress Project are crucial for raising awareness and improving healthcare for those with fibroids.

1: Personal Story

Tanika Gray Valburn recounts her traumatic experiences with fibroids, leading to the founding of the White Dress Project. This chapter highlights the personal and emotional impacts of living with fibroids. Tanika Gray Valburn: "It was in my closet that day that the White Dress Project was formed."

2: Medical Insight

Rachel Burvell discusses the medical challenges and treatment options for fibroids, emphasizing the disparities in care for Black women. Rachel Burvell: "Black women are more likely not to get adequate medical care. It's not a matter of them being misdiagnosed but perhaps being disregarded."

3: Research and Treatment

Exploration of new research linking blood pressure management to fibroid control, including a discussion of non-surgical treatment options. Rachel Burvell: "The study found that blood pressure medication could slow the growth of fibroids."

1. Regular Check-Ups: Ensure regular gynecological exams, especially if you have symptoms like heavy bleeding.
2. Educate Yourself: Learn about fibroids to better advocate for yourself during medical appointments.
3. Consider All Treatment Options: Explore both surgical and non-surgical treatments for fibroids.
4. Seek Second Opinions: If diagnosed with fibroids, consider getting a second opinion about treatment plans.
5. Support Advocacy Groups: Engage with organizations like the White Dress Project to stay informed on fibroid research and education.

Fibroids are benign uterine tumors. So why does it matter that the majority of people with a uterus will have one before they are 50 years old? Physician Rachell Bervell, founder of the Black OBGYN Project, explains that when symptoms arise, they can be quite serious — from extreme menstrual bleeding to fertility problems. Plus, why they're very likely to affect you or a loved one.

People

Tanika Gray Valburn, Rachel Burvell

Content Warnings:

None

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Emily Kwong
You're listening to short wave from NPR.

Tanika Gray Valburn remembers when it all happened. She was 13, helping her uncle mow the lawn. It was summertime and she was wearing white shorts.

Tanika Gray Valburn
I just remember feeling wet and my aunt rushing me into the bathroom. And I remember crying profusely, thinking, what did I do.

Emily Kwong
Because of her white shorts? Other people knew Tanika had gotten her first period before she did. And her period was intense and always would be.

Tanika Gray Valburn
I kind of just knew my period at that time to be just always a gush, feeling very heavy, always a lot of pain. And I didn't think too much of it because I thought to myself, well, I guess this is just how periods go.

Emily Kwong
When that time of the month came around, she always had to wear two pads, two pairs of underwear. Despite all of these symptoms, it wasn't until her mid twenties that Tanika was finally diagnosed with fibroids.

Fibroids are these benign uterine tumors that are really common in some people. They can cause severe pain, bleeding, and even problems with fertility. Tanika knew the symptoms well from watching her own mom struggle.

Tanika Gray Valburn
Ever since I've known my mom, she's always talked about her desire to have six kids, and I am her one and only child.

Emily Kwong
Black women are two to three times more likely to develop fibroids than white women. And when Tanika began family planning, the advice she got from her doctor shocked her.

Tanika Gray Valburn
He said to me, Tanika, just go ahead and forget about motherhood. You need to have a hysterectomy because your uterus is way too compromised.

Emily Kwong
Tanika sought out a second opinion from a doctor, who said medications and surgery could increase her chances of starting a family.

The plan was to take a medication meant to shrink the fibroids and then undergo surgery a couple weeks later to remove them.

But when she took the meds, it.

Tanika Gray Valburn
Was the worst pain of my life. And I remember her literally counting down like I was having contractions.

Emily Kwong
Tanika needed the equivalent of an emergency c section, during which the doctor counted 27 fibroids.

It was during her lengthy recovery that one day she walked into her closet and noticed that she didnt own a single piece of white clothing.

Tanika Gray Valburn
It was in my closet that day that the white Dress project was formed.

Emily Kwong
Its a nonprofit organization bringing national attention to fibrite education and uterine health. And one of the people most proud of Tanikas work is Rachel Burvell, physician on the advisory council of Doctors for the White Dress project, who says the group is filling a crucial gap.

Rachel Burvell
The goal is to raise awareness about a matter that affects 80% of women by the time they are in their sixties and seventies.

Emily Kwong
Today on the show, we talked to Rachel about uterine fibroids, why a diagnosis can be so hard to get, and a big clue about why they are most common in black women, plus the treatment options most patients don't hear about. I'm Emily Kwong, and you're listening to short wave, the science podcast from NPR.

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Emily Kwong
So, Rachel, given that fibroids can have such real negative health outcomes, I bet a lot of people listening are just wondering, you know, how do I even know I have them? What would you say to people living with that question mark?

Rachel Burvell
First, if you are not bothered by anything, you should not worry. If you have a fibroid, there's no need to search for it. But if you do have very heavy bleeding, let's say you've gone to the ed multiple times because you've passed out. When they do further tests, they realize that they should do some imaging because they're concerned that your heavy bleeding, which is causing your anemia, is secondary to fibroids. What they'll do is imaging like an ultrasound to both locate and identify where the fibroids are, how big they are, whether it's something that maybe down the road will require surgical intervention, whether it's something that we can just manage with.

Unidentified Speaker
Medication in general, you know, black women are more likely to not get adequate medical care. Is that true for fibroid treatment and assessment as well?

Rachel Burvell
Yeah. Black women are at the intersection of being a woman, where you can be deemed hysterical for being in pain or in discomfort, but you're also a black individual who oftentimes is not believed enough when you are in pain. And so it's not a matter of them being misdiagnosed or being missed, but perhaps it's them being disregarded when symptoms are actually quite serious.

Emily Kwong
Absolutely. Yeah. Well, diagnosis is one thing, and then there's treatment options. And we're going to talk about a study with some really promising treatment potential. Okay. This came from researchers who looked at the relationship between fibroids and high blood pressure. Right. Okay. So the study, it looked at about 2500 people in their forties and early fifties who had fibroids. Some of these people were on medication to control their blood pressure, like anti hypertensive medication, and others were not. What did the researchers want to know about these two populations?

Rachel Burvell
So these researchers were looking at the ways that blood pressure medication could possibly slow the growth of fibroids or prevent fibroids altogether. With this study, what they found was there is something between the connection of stress, perhaps, or high blood pressure that contributes to the growth of fibroids. And this is one argument for why black women might have more fibroids.

And their recommendation at the end of the study was that we should be integrating understanding of chronic conditions like high blood pressure, also known as hypertension, when we are seeing patients for their uterine health and their reproductive healthcare, especially to prevent the growth of fibroids.

Unidentified Speaker
I mean, it all just seems like a big mystery. But this is a pretty significant clue.

Rachel Burvell
Exactly. It's a hugely significant clue. Maybe it also adds another treatment modality to preventing fibroids. So instead of just managing the symptoms that come with the medication, is this something that we can give people to have a non surgical treatment option down the road?

Unidentified Speaker
Out of curiosity, like, what do you think of current fibroid treatments outside of surgery, like, what's available and what's your opinion of them?

Rachel Burvell
There's so many different types of treatments for fibroids.

They could be as conservative as watching and waiting and just seeing what happens.

But then they can also go to alleviating the more serious side effects of fibroids. One of the most important side effects is heavy bleeding.

Oftentimes we can give you birth control to do so. We can also go a step beyond that and provide you some medications that reduce the volume of blood that is being released during care periods.

Emily Kwong
Okay.

Rachel Burvell
On the very far end are the more procedural types of management and treatment.

So uterine artery embolization is a procedure where we are essentially preventing blood flow from going to the uterus. Another is a surgery that removes the fibroid from the uterus itself.

And finally, on the very far end, is having a hysterectomy altogether.

And I caution patients, because a hysterectomy, unless that is the option that you are certain of for yourself, is permanent sterilization. Yeah. And one reason why I caveat this all as well, by talking about the relationship to black women and their experiences with healthcare, because we know historically, that means and methods of things like eugenics has been connected to the sterilization of populations deemed unfit. Yeah, we know that. That is, quite frankly, where ob GyN and reproductive healthcare has been complicit and many of the disparities that we see with regards to marginalized communities and marginalized populations.

Emily Kwong
I mean, what strikes me about everything you're saying, just in addition to shedding light on these minimally invasive treatments for fibroids, is just how much you know about the history of gynecology.

Rachel Burvell
Yeah, this is where history is so deeply entrenched, because the starting of gynecology itself as a specialization by Doctor James Marion Sims, was by disregarding the pain and the humanity and the personhood of black enslaved women, only three of whom we know about, because he talks about it in his autobiography. Their names are Annika, Betsy, and Lucy.

When you consider that these enslaved women, who, by the way, were being operated on not because they were having issues with their reproductive health care, they were being operated on because it was a capital investment to maintain the slave population.

When you think about that and you kind of come to terms with that being the start of the specialty, and then you try to understand why, 150 years later, medical students in Virginia are still saying black people can endure more pain, or black people have thicker skin than white people, and this is contributing to the health disparity or the reasons why they're not prescribing them pain medication, that's not an accident.

Emily Kwong
Yeah, I mean, well, given this historical throughline, it's notable to me how much you've done beyond medical school. You know, five years ago, you started the Black Ob GyN project as this space to talk about women's health and reproductive health care, but in a truly anti racist way.

Tell me more about the origins of that project and what it means to you.

Rachel Burvell
The Black OBGyN project started as a group meet group, where we had about 100 black providers that were entering OB GYN as trainees to talk about challenges that they were seeing. And we wanted to make an Instagram page to provide a snapshot of what it was like to be an Ob GYN.

However, after a couple months of residency and being really busy, what we noticed was that the disparities continue in the health conditions that many of our patients were coming in with. And unfortunately, black women were bearing the brunt of many of those issues. So our page kind of transitioned to being education about what was happening in the space in healthcare conversations.

Of course, fast forward to 2020. We saw Covid happened where disparities in healthcare were amplified.

There were multiple unjust deaths and murders of black individuals that made people uncomfortable with the way that biases and discrimination was showing itself in social encounters. And medicine had to have a reckoning with itself to say, we also have been complicit.

And so I think through the black ob gYN project, it's been almost a requirement to both be reflective in what is shared and what is posted, but also be very forward thinking in the hopes that we don't repeat what was done in the past ever again in the future.

Emily Kwong
Rachel, thank you truly so much for talking to us.

Rachel Burvell
Absolutely. Thank you for having me.

Emily Kwong
If you want to hear more from Rachel, theres a companion piece we reported with the podcast Life Kit. Its all about how to maximize your appointments to the gynecologist. We will link to this piece in our episode notes in case youre curious for you or your loved ones.

This episode was produced by Burleigh McCoy and edited by our showrunner Rebecca Ramirez. They both checked the facts. The audio engineer was Maggie Luthar. I'm Emily Kwong. Thank you for listening to short wave from NPR.

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