Woman With Uterine Fibroids Reveals How They've Affected Her Quality of Life

After years of padding herself so she wouldn't bleed on her clothes and dealing with debilitating period pain, Tanika Gray Valbrun launched a campaign to educate others about uterine fibroids.

Tanika Gray Valbrun would rarely stand up without looking down to make sure she hadn't bled onto her seat. She would check before leaving staff meetings at CNN, where she worked as a news producer. She'd check when she stepped 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, said Valbrun. "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 it was life with uterine fibroids. Fibroids are "muscular tumors that grow in the wall of the uterus (womb)," per the Office on Women's Health (OWH). They can be quite common, though estimates vary. Many people with the condition don't develop symptoms, but Valbrun did.

Throughout the more than 25 years Valbrun had lived with the benign (non-cancerous) tumors, they had caused menstrual bleeding so heavy, she'd become severely anemic at times, requiring emergency blood transfusions. She'd endured excruciating cramps for nearly a third of every month. She'd undergone two surgeries to remove the fibroids. And for a while, she gave up on wearing white.

"It's a simple thing," said Valbrun. "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 Uterine Fibroids

"Women need to know what fibroids are and what fibroid symptoms are," Elizabeth Stewart, MD, a gynecologic surgeon at the Mayo Clinic who specializes in the condition, told Health. The more education people with fibroids receive, the more likely they'll get the support and treatment they need.

Fibroids are prevalent: Between 20 and 80% of women will get them by age 50, per the OWH. Some people experience symptoms and some do not. The severity of the symptoms can also vary. If they are mild, treatment may not be necessary. But when the fibroid symptoms are severe, they can affect a person's quality of life.

"There is a trauma in having to constantly worry about what's going to happen when you go out," said Valbrun. "You can never be carefree."

Though heavy bleeding is one common symptom of fibroids, not all people who have fibroids experience it. Depending on their size, number, and location in and around the 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 person's ability to become or stay pregnant. But infertility is a "very rare" symptom, per the OWH. Dr. Stewart stressed that many people with fibroids "conceive without difficulty and have an uncomplicated pregnancy."

Several treatments exist for people with uterine fibroids who experience symptoms, per the OWH. You may be able to take medication. Surgery is another option, including a myomectomy (removing just the fibroids) or a hysterectomy (removal of the whole uterus—the only way to fully cure the condition). You may also be a candidate for a surgery called uterine fibroid embolization, in which a healthcare provider injects small particles into the uterine arteries to block the fibroid blood vessels, causing the tumors to shrink and "die."

Her Turning Point

Valbrun's life 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," said Valbrun. But even though Valbrun 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," said Valbrun. "When you're young, you're not thinking it will be your story as well."

Fibroids do run in families, explained Dr. Stewart, which sometimes falsely convinces people that their severe period symptoms are healthy. "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 Valbrun's mid-thirties, after years of symptoms, her healthcare provider 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 Valbrun 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 surgeon removed a staggering 27 fibroids from her uterus.

While recovering and marveling at the impact the disease had had on her life, Valbrun became inspired to help other people 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," said Valbrun. "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."

Valbrun 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 people with fibroids. "Nobody was organizing walks or runs to benefit fibroids research. Nobody was trying to sell me a T-shirt," said Valbrun. "I felt it was important to start a conversation."

Valbrun's guiding mission? To help people get the medical care necessary to be able to wear white again—which, for her, came to symbolize life with the disease controlled.

Fibroids can negatively impact people's quality of life outside of clothing choices. In a survey of a thousand people with fibroids who experienced symptoms published in the American Journal of Obstetrics and Gynecology in July 2013, Dr. Stewart found that the disease was a significant source of fear and anxiety—touching everything from people's romantic relationships to their body image to their general outlook.

Many survey participants reported that fibroids affected their careers, too: Nearly two-thirds of employed respondents were concerned about missing work due to their symptoms, and a quarter 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," said Valbrun, who underwent a second minimally invasive surgery in 2018 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 showed 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," Valbrun, who is Black, told Health. "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 lived, to officially designate July as "fibroids awareness month." And since then, she's continued talking about life with the condition to lawmakers, friends, coworkers, and healthcare providers.

"Women often feel they just have to live with it, and some women are told they just have to live with it," said Dr. Stewart. "That misconception should be changed."

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