As a teenager, Entertainment Tonight co-host Nischelle Turner thought heavy, painful periods were normal. She became used to accidents, always carrying a "just in case" stash of tampons and worrying about wearing white.
"I did not know that being curled up in a ball, cramping really bad was abnormal," Turner, 47, told TODAY. "I thought everybody went through that."
It wasn't until many years later that she was finally diagnosed with uterine fibroids, growths in and around the uterus that are not cancerous.
“I knew that something was going on, but I didn’t know what it was,” Turner said. “I was actually scared that it could be some sort of cancer because my stomach looked like I was three months pregnant.”
Although she didn’t know what they were at the time, she could feel and even move the fibroids around. Now Turner is sharing her story to help others — particularly other Black women — feel comfortable getting the care they need and speaking more openly about the condition.
What are fibroids?
Fibroids are benign tumors caused by an overgrowth of smooth muscle, Dr. Khara Simpson, assistant professor of gynecology and obstetrics at Johns Hopkins Medicine, told TODAY.
"Most women, regardless of their racial background, will have at least one fibroid by the age of 50," said Simpson, who specializes in minimally invasive surgery in the treatment of conditions such as fibroids, endometriosis and ovarian cysts. But in the majority of cases, the fibroids don't cause noticeable symptoms.
Depending on how large the fibroids are and where they're located, they may cause different issues, Simpson explained. Black women, though, are likely to have more fibroids and to have larger fibroids, which also makes them more likely to cause symptoms like those Turner experienced.
Dozens of fibroids, three surgeries and a hidden family history
After an ultrasound, Turner was diagnosed with fibroids and was told they were so large that they needed to be removed. "I was relieved that there was an answer, but I had a lot more questions," she recalled.
Turner learned that she actually had a family history of fibroids — and that her mother had a hysterectomy at 28 due to the condition. The discovery "sparked a medical conversation within my family," she said. Once that conversation started, it turned out that some of her cousins also had fibroids or hysterectomies.
"And I was, like, 'Whoa, all of this was happening to my family that nobody ever talks about,'" Turner recalled.
Just over a decade ago, she underwent her first myomectomy, a procedure to remove uterine fibroids. But, five years later, her symptoms started to come back — along with some new ones. Her stomach wasn't protruding as much, but the fibroids were causing back pain and putting pressure on her bowels. "I had to use the bathroom every five minutes," Turner said, because the fibroids were "pushing down on my organs."
During the second surgery, her doctors discovered 13 fibroids.
After another five years, the symptoms came back yet again. During Turner's third procedure, doctors discovered 24 fibroids — 15 larger masses and nine smaller ones.
"The tricky thing about recurrence is there are no current treatments that will prevent them from coming back," Simpson said, adding that there's about a 50% chance of recurrence within five years of removal.
A new fibroid won't necessarily pop up in the same place as the last one, and it won't necessarily cause symptoms, she said, but it's important for patients to know that — aside from a hysterectomy — there's no permanent solution for fibroids right now.
While Turner wasn't ready to consider a hysterectomy before, she will if the fibroids come back again, she told TODAY.
Black women face unique fibroid risks
Black women face unique risks for fibroids, which may be partly due to inherited genetic factors, Simpson said. But they also face disparities fueled by institutional racism in trying to get adequate, appropriate treatment for fibroids, she explained.
People of color face barriers in accessing routine medical care and are less likely to get referrals to specialists, research has shown. Primary care providers frequently don't ask about a family history of fibroids, Simpson said. And when Black women do get medical attention, they’re more likely to have their symptoms dismissed — or they’re only told about the most extreme treatment options, such as a hysterectomy, Simpson said.
On top of that, if they are told they need a myomectomy or hysterectomy, Black women may not be offered surgical options that require less painful recovery, like laparoscopic, robotic or vaginal surgery, which is “really the standard of care at this juncture,” Simpson said.
Finding support in community, advocating for yourself
After learning about her family history and the lack of permanent treatment options, Turner decided to be more public about what she was going through. “I just felt like, if there was any population other than Black women that was affected to this magnitude by something, we’d be trying to get some answers,” she said.
She began working with the nonprofit Black Women's Health Imperative and, through that work, met other public figures also dealing with fibroids.
“It really opened my eyes to these women who I interact with every day and never knew were having the same fight that I was, the same struggle that I was," Turner said. "Before, I thought I was all alone. There's a lot of shame in it."
As someone who has a hard time accepting help from others and "a do-it-yourself type of person," Turner said small gestures can be surprisingly impactful.
She recounted an intimate moment with her partner discussing the scars from her multiple fibroid surgeries. She felt self-conscious and mentioned that, maybe, she would look into cosmetic procedures to reduce the look of the scarring. "And he said, 'Don't you dare. That's a superhero scar. I love it and it's beautiful,'" Turner recalled.
The fibroid treatment process can be hard, and “you can start to feel like damaged goods," Turner said. So those little moments of acceptance, support and encouragement can be very meaningful.
Knowing that it can be difficult to navigate the medical system (particularly as a woman of color), Turner doesn’t advocate for any one treatment approach over another. But she encourages people to “go to their doctors, get a second opinion, get a third opinion and keep asking questions,” she said. And her biggest piece of advice is to not give up if you feel like something isn't quite right.
"You are your best advocate, you know your body, you know when something's off," Turner said. "I don't care if you think you get on everybody's nerves. You can't ever be too much of an advocate for yourself — or for your health."