Tanika Gray Valbrun rarely stands up without looking down to make sure she hasn’t bled onto her seat. She checks before leaving staff meetings at CNN, where she works as a news producer. She checks when she steps out of her car. And before she married her husband, she would check repeatedly during dates.
“I’ve had to learn how to pad myself” to keep the bleeding contained, she says. “I know the whole formula—what kind of underwear to wear, what kind of tights, what kind of Spanx. I’ve tried and tested everything. It’s become a way of life.”
For Valbrun, 41, it’s life with uterine fibroids.
Throughout the 25 years Valbrun has lived with the benign tumors, they have caused menstrual bleeding so heavy, she’s become severely anemic at times, requiring emergency blood transfusions. She’s endured excruciating cramps for nearly a third of every month. She’s undergone two surgeries to remove them. And until recently, she gave up on wearing white.
“It’s a simple thing,” she says. “Like, who cares, why not just wear black? But I love clothes, and the fact that I had to sacrifice wearing white for these benign tumors—I wasn’t feeling it.”
Facts about fibroids
After decades of being downplayed and pushed to the sidelines, women’s reproductive health has in recent years become the subject of louder public conversation. Periods are now openly celebrated in books and a board game, hit TV shows, and an Oscar-winning short film. Thanks to vocal celebrities like Lena Dunham and Padma Lakshmi, many chronic pelvic conditions—endometriosis high among them—have seen splashy media coverage.
But fibroids haven’t yet had their big cultural moment, despite a growing chorus of personalities from Sara Bareilles to FKA twigs to several Real Housewives sharing their experiences. Doctors say the condition isn’t on most people’s radars—but they’re hopeful this will change.
“Women need to know what fibroids are and what fibroid symptoms are,” says Elizabeth Stewart, MD, a gynecologic surgeon at the Mayo Clinic who specializes in the condition, which costs the US healthcare system some $34 billion annually. The more education women receive, the more likely they’ll get the support and treatment they need.
Fibroids are extremely prevalent: Roughly 70% of white women and 80% of black women will develop them in their lifetime. In most cases, the growths are innocuous: Less than half of women with fibroids will suffer any symptoms or consequences. But when they do act up, they can become a bloody, bulky barrier to women’s well-being and happiness.
“There is a trauma in having to constantly worry about what’s going to happen when you go out,” says Valbrun. “You can never be carefree.”
Though heavy bleeding is one common symptom of fibroids, not all women who have fibroids experience it. Depending on their size, number, and location in and around a woman’s uterus, fibroids can also cause bloating, pressure on the bladder or bowel that can sometimes affect the organs’ ability to function, and pain during sex. In some cases, they can impact a woman’s ability to become or stay pregnant—but, Dr. Stewart stresses, “many women with fibroids conceive without difficulty and have an uncomplicated pregnancy.”
Historically, the most common treatment for problematic fibroids has been to remove the uterus entirely—fibroids are the leading cause of hysterectomy in this country. But many doctors now offer an expanding list of options, from hormone therapy and sound waves to minimally invasive surgery.
New research suggests a treatment called uterine fibroid embolization, in which a doctor injects small particles into the uterine arteries to block the fibroid blood vessels, causing them to shrink and “die,” may be just as effective as surgery and lead to fewer complications.
Her turning point
Valbrun’s life, for one, was affected by fibroids before she was even born.
Her mother had fibroids, which may have caused her to miscarry two different sets of twins. “I was kind of like her miracle baby,” Valbrun tells Health. But even though she grew up hearing about her mother’s fibroid symptoms, she didn’t officially learn that her own heavy periods were caused by the growths until her late teens. “You just think it will skip a generation,” she says. “When you’re young, you’re not thinking it will be your story as well.”
Fibroids do run in families, explains Dr. Stewart, which sometimes falsely convinces women that their extreme period symptoms are normal. “When you reach out to others to say, gee, does this sound strange to you, it doesn’t, because all of your cousins and all of your friends have fibroids, too, and they are all having twelve-day periods.”
In her mid-thirties, after years of symptoms, Valbrun’s doctor recommended hormone therapy to shrink her fibroids, which would be followed by a minimally invasive surgery to remove them. But because of the unique circumstances of her case, the treatment didn’t go as planned: When she started taking the hormones and the tumors began to disintegrate, her body tried to pass them through her vaginal canal. The pain was so intense, she couldn’t walk. She ended up undergoing emergency surgery, during which her doctor removed a staggering 27 fibroids from her uterus.
While recovering and marveling at the impact the disease had had on her life, she became inspired to help other women who were also privately dealing with fibroid symptoms. “It’s like this club that everybody belongs to, but nobody gets a membership card or benefits,” she says. “I knew it affected so many people, but everybody was just kind of like, I guess this is my lot in life, and I just gotta go with it.”
She wanted to change that.
Fighting for change
Valbrun channeled this desire into forming The White Dress Project, an advocacy group dedicated to educating and supporting women with fibroids. “Nobody was organizing walks or runs to benefit fibroids research. Nobody was trying to sell me a T-shirt,” she says. “I felt it was important to start a conversation.”
Her guiding mission? To help women get the medical care necessary to be able to wear white again—which, for her, came to symbolize a life unburdened by disease.
Beyond fashion choices, fibroids can impact women’s quality of life. In a survey of a thousand women with fibroids published in the American Journal of Obstetrics and Gynecology in 2013, Dr. Stewart found that the disease was a significant source of fear and anxiety—touching everything from women’s romantic relationships to their body image to their general outlook.
Many survey participants reported that fibroids affected their careers, too: Nearly two-thirds were concerned about missing work due to their symptoms, and a quarter of employed women believed their symptoms prevented them from reaching their professional potential.
“Part of the problem is, as women, we’re not talking about it. We’re not sharing these stories. We’re not sharing why these things are problematic,” says Valbrun, who underwent a second minimally invasive surgery last year to remove two more fibroids. “And because of that, there isn’t a lot of support.”
This support is particularly needed in the black community. Research has shown that black women are more likely to have fibroids, more likely to have severe fibroids, and more likely to develop them at an earlier age. “We’re taught that we’re already behind the eight ball,” says Valbrun, who is black. "And your fibroids are not one more thing that your employer needs to hear about, or your husband needs to hear about, or your friends need to hear about. Because you’re a woman, and just deal. And I think that’s extremely unfortunate.”
Shortly after creating The White Dress Project in 2014, Valbrun successfully petitioned the state of Georgia, where she lives, to officially designate July as “fibroids awareness month.” And since then, she hasn’t stopped talking about life with the disease to lawmakers, friends, coworkers, and doctors.
“Women often feel they just have to live with it, and some women are told they just have to live with it,” says Stewart. “That misconception should be changed.”
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