The Toll of Fibroids on Black Women
Alana: You're listening to The Takeaway. I'm Alana Casanova-Burgess in for Melissa Harris-Perry. Once you start thinking about the cult of resilience, you see its messaging all around you. How we should push through pain in all areas of our lives. It happened to me a few weeks ago. I was scrolling through Twitter when I saw a thread from my friend WNYC's Tracie Hunte. It stopped me in my tracks. Here she is reading it.
Tracie Hunte: The surgeon who took out my fibroids told me that people should tell their doctors if they experience any pain with their periods, not just severe pain. Pain-free periods should be the standard. Any pain rather than just severe pain because from the time we first get our periods we're told the pain is normal. As we get older and the pain gets worse, we tell ourselves nothing's wrong. Then one day you've got several clementine-size fibroids clogging up your uterus.
Alana: The replies were incredulous. It had never occurred to many of us that bad cramps weren't just totally normal, that any pain at all was cause for concern. Just another example of assuming that there's a degree of suffering that can just be gotten used to or pushed past. It turns out that this is affecting a lot of women. Of the estimated 26 million women between age 15 and 50 who have uterine fibroids, more than half of them will experience complications. For some reason, we don't know why, Black women are more likely than white women to have fibroids and also more likely to have painful symptoms from them.
For more on this, I spoke with Dr. Anissa Vines, an assistant professor of epidemiology at the UNC-Chapel Hill Gillings School of Global Public Health, and Patrice Peck, the senior opinion editor at Cosmopolitan. Patrice recently wrote about the toll of fibroids on Black women for the New York Times.
Patrice: Fibroids are benign tumors that grow in the muscle of the uterus and they can really range in size from that of a sesame seed to sometimes like a watermelon. They can be dangerous because sometimes the people with fibroids experience related health problems or symptoms that can be quite severe and those can include heavier and more painful periods as you just mentioned, frequent urination, abdominal bloating, lower back pain, painful sex, and rarely, but sometimes, infertility.
Alana: Dr. Vines, can you expand a bit more on the idea I mentioned in the introduction that painful periods are actually not normal? What's okay and what's actually cause for concern?
Dr. Vines: I was very intrigued by that statement because it is something that we as women do not talk about. We don't talk about like, "What is a normal period? How much of a flow should I really have?" It's just, we begin menstruation, these are the products that you will need for the rest of your reproductive years. You'll have a week where you're not feeling the greatest, but it's okay because you're not alone, all women experience this and it will be okay. It's not okay when we don't really start talking more about what is happening in our body with regards to the amount of blood loss, pain, cramping, the length of time for that particular period.
We just need to talk more about it. It's not something that we need to communicate the message of, "Oh, push through it. Every woman goes through it." That is not the response that we need to take especially when you're confronted with more than 70% of all women experiencing uterine fibroids before they reach menopause with 80% of those being Black women in their prime reproductive years. We have to change the narrative to really uncover what is normal and what is not and for those situations where a period or pelvic pain is not normal, we need the doctors and the researchers to be responsive to those concerns.
Alana: I saw a statistic that Black women are two or three times more likely than white women to have uterine fibroids and more likely to have debilitating symptoms from them. We don't know why, but do you have any guesses?
Dr. Vines: We do not know why. There's also research that is showing that Black women develop fibroids at an earlier age that tend to be 10 to 15 years earlier than their white counterparts and so the fibroids also tend to be larger, more symptomatic, and so forth. For me, in my research, I'm looking at the role of stress, and it touches on that resilience factor that you mentioned.
In thinking about stress, specifically among Black women, I'm thinking about that lived experience, that intergenerational lived experience that has been shaped by various historical factors, cultural factors, and just our social-political context in general. There is research that talks about racism as the fundamental cause of not just uterine fibroids, but of many health disparities if not all because it does shape one's access to resources. It does dictate where one might live, play, work and even dream.
Alana: Patrice, in the course of your reporting for The Times you talked to several Black women who suffer from symptoms. Can you talk about their experiences living with fibroids? The toll that it took on them.
Patrice: I had the idea to dig into the invisible emotional toll that fibroids were having on Black women in particular because a really good friend of mine, a Black woman named Khwezi Magwaza who I included in the piece, I got a call from her a couple of months ago. She had informed me that she was at the hospital because she had passed out at a Starbucks. She had told me just very matter-of-factly, trying to rush through it and I was like, "Wait a minute. What happened? Why did you pass out?" She had, let me know it's because her blood levels were very low and that is a result of the anemia that is caused by her severe uterine fibroids because that can sometimes be a symptom.
She felt as though she could just push through and put her own wellbeing on the back burner. I just thought that was very interesting and I interviewed a few other Black women of different professional backgrounds and ages, and they all spoke to me about their symptoms, not being believed by medical professionals several times. Some of them--
Alana: Like they're being gaslighted by the medical establishment.
Patrice: Yes. They felt as though they were being gaslighted, ignored, unheard. Some of them had mentioned it wasn't until they were seen by a Black doctor that they were able to finally be diagnosed with this condition that they had not even ever heard of. It just really revealed this common thread of sitting alone and dealing with this severe condition that you are already disproportionately impacted by, but then you're also experiencing this condition in a very unique way by being a Black woman in our society.
Alana: Can both of you talk about what advice you have for women and people with periods when it comes to this particular health issue? It seems like it's not just about asking your doctor, but also about finding a doctor who's going to be attuned to this as a problem. Who's going to think that pain is actually not normal, which it doesn't sound like a lot do.
Patrice: I actually spoke with Tori Dixon a licensed professional counselor who works with Black women who experience fibroids. I spoke with her for this piece and she gave some really good suggestions about what Black women who are trying to just push through this severe condition can do.
She said, it's important to dismantle those super women's stereotypes by learning when and how to say no, embracing self-compassion over perfectionism, and really scheduling in time for yourself. Most importantly, like just knowing when to ask for help and recognizing the signs that your mind along with your body have been impacted fibroid diagnosis or impacted by fibroids. That includes asking yourself have you had your social activities changed since your diagnosis. Are you sad or depressed? Are you having trouble concentrating or sleeping or are you crying a lot? Has your appetite changed? Has your weight changed or are you even having suicidal thoughts?
Those might all be indications that it might be time to talk to a mental health professional as many of the women who I interviewed have done. Overall, I would say, just to remember that this is not all doom and gloom as Dr. Vines and myself has said, this is an opportunity to empower yourself by joining in community with other people who are also impacted by the same condition you are, and to really just educate yourselves and become more informed and to just raise awareness.
Dr. Vines: I would just add that one, I'm very appreciative of the article that Patrice wrote. I hope that it will continue to stimulate dialogue about fibroids because the more we can talk about fibroids we make it visible. When we make it visible, it makes it easier for women to share with their loved ones, their partners, their employers, what is going on and so it makes this much more of a real, tangible problem that we can address. Also for women, ask questions of your doctor, challenge them. "Let's check for fibroids."
There are so many treatments that are now underway, explore them all via Google.
For those who do not have access to healthcare, that's even more reason for those who have access to healthcare to talk about fibroids, the options what's normal, what's not normal for those women who don't have access so that they can be able to find sources for care and support.
Alana: Thank you so much. Patrice Peck is the senior opinion editor at Cosmopolitan and Dr. Anissa Vines is an assistant professor of epidemiology at the UNC-Chapel Hill Gillings School of Global Public Health. Thank you both for joining us.
Patrice: You're welcome Alana.
Dr. Vines: Thank you.
Nikki: Hi, this is Nikki from Arlington, Texas. I had a massive fibroid that was the size of a small South American country and thousands of little ones on top of that. Following my fifth child, I was told that it was even bigger and we talked about it and the doctor said that I could take birth control to shrink it which I can't do because I have reactions.
Then I asked if we could surgically remove them and he said, no, that I would bleed to death and the only other option was for me to have a hysterectomy, which my doctor did not want me to have because I was only so young 33, but I told him that if I promised to have that uterus bronzed and put on the baby shelf with all of the five pairs of baby shoes after having so many children that would he please, please take it out. My husband begged too because we had three young children that were all in different size pampers at the time.
Fibroids are no fun. They make you bleed a lot and cramp and looks pregnant all the time and you become anemic.
Alexandra Phillips: Hi, Alexandra Phillips, Boulder, Colorado. Uterine fibroids. Yes, I spent 10 years of my life with them. Misdiagnosed, even though I had got them at 40, which is the most common predictor of having uterine fibroids. I was misdiagnosed for two years and pretty much dismissed by any doctors saying that it was perimenopause and just go home and deal with it. It was awful and it's a very common thing in women. It's amazing how many women are misdiagnosed and hope you can spread the word about it.
Danita Shaw: This is Danita Shaw from Madison, New Jersey. Yes, I had fibroids in the past. By the time it was removed, it was basically the size of a grapefruit and had caused a great deal of trouble.
Leida: Hi, this is Leida and I'm calling from Southern California and I have lived with fibroids in the past. They created a lot of problems, a lot of issues and it ended up by me having a partial hysterectomy in October of 2012.
Michelle: This is Michelle from Dallas. I did have fibroids in the past and they made for very heavy messy monthly cycles. I was very shocked that in the course of one year I went from having little pea-size fibroids to one that was so big that my OB called it my uterine annex. In grams when it was all removed because it led to a hysterectomy, it was almost the same size as the uterus. Good thing to get these things checked out.
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