Model Cynthia Bailey Wants to Talk Fibroids

Cynthia Bailey wants fibroids to be a household word. At the very least, the model, actress and former "Real Housewives of Atlanta" star hopes the medical issue, which affects about 26 million women between 15 and 50 years old, becomes a frequent topic of conversation among women and their gynecologists.

Just because your doctor hasn't broached the subject, she said, doesn't mean it's not a critical conversation to have.

Fibroids are common benign, smooth muscle tumors of the uterus. They'll impact more than 80 percent of Black women and nearly 70 percent of white women by age 50.

Patients wait an average of 3.6 years before treatment due to factors such as social stigma and a lack of public education about fibroids, according to the Society for Women's Health Research.

'What I would have loved for her to share with me at that time was that, although it's not life-threatening, fibroids do grow as they stay in your body and they eventually can be an issue.'

July is National Fibroid Awareness Month, so it's a perfect time to learn how fibroids can impact your health, as well as your full range of treatment options. As Bailey learned firsthand, self-advocacy is key to taking charge of your fibroid health journey.

Become your own health advocate

"I, 100 percent, encourage women to be their own health advocates, take matters into their own hands and do the research," said Bailey, who treated her fibroids with uterine fibroid embolization.

Bailey's fibroid health journey traces its roots back two decades. Bailey's doctor informed her while she was pregnant with her daughter, Noelle Robinson, that she had a grape-sized fibroid. Bailey was relieved to learn the fibroid wouldn't harm her baby, but she left the doctor's office unprepared for how fibroids would begin to wreak havoc on her quality of life.

"What I would have loved for her to share with me at that time was that, although it's not life-threatening, fibroids do grow as they stay in your body and they eventually can be an issue," Bailey said. "That was a conversation I didn't know to ask for. After I had my baby and my fibroids began to grow, I became anemic. I was exhausted constantly. My periods were ridiculously heavy. Sex became painful. And I had the bloat like I was always on the baby bump list because I looked about three months pregnant as my fibroids got bigger."

'Patients might be having bothersome symptoms and yet, treatments are deferred.'

Kayla Nixon Marshall, M.D., a minimally invasive gynecologic surgeon at Rush University Medical Center in Chicago, said an important part of her practice is to share with patients the range of symptoms they may experience from their fibroids. That includes the possibility of impacted fertility.

"Fibroids can grow anywhere throughout the uterus: low by the cervix, up by the top and very rarely, detached from the uterus and present in other places in the pelvis," she said. "The symptoms really depend on how deep into the uterus the fibroids are growing."

She typically sees patients presenting with the following symptoms:

• Abnormal uterine bleeding
• Bleeding in between menstrual cycles
• Pressure, pain or discomfort with sex
• A feeling like they can't hold their bladder
• Changes in the stool
• Straining with bowel movements

"When fibroids are growing into the innermost part of the uterus, they can have an impact on fertility and increase the risk of miscarriage," she said.

Treating fibroids

Though treatment options for fibroids are numerous, stigmas surrounding women's health often coalesce to create barriers to care.

Marshall noted the hysterectomy—an invasive procedure that takes away a woman's ability to have children—has become the standard of care for fibroids. That's despite the fact many women continue to have abdominal pain or cramps, according to the National Library of Medicine.

"Fibroid symptoms can be brushed off," Marshall said. "Patients might be having bothersome symptoms and yet, treatments are deferred. The other extreme I see is patients with fibroids immediately pushed toward hysterectomies. The hysterectomy has become the standard of care for fibroids because historically, the priority has been on childbearing. Once childbearing is seen as complete, some people thought, 'Maybe there's no use to having a uterus or even ovaries.'"

A hysterectomy, from a purely surgical view, is technically an easier procedure, she added, and it is reimbursed higher by insurance companies. Doctors get paid more to do a hysterectomy, and the reimbursement can be an incentive to steer clinicians toward the more invasive options.

"But the demand from patients is growing for uterine-preserving options," Marshall said. "Patients want to avoid a major surgery that would take them out of work for a long period of time and may carry risks of complications."

Following a decade of worsening symptoms, Bailey decided enough was enough when she reached her early 40s. She scoured the internet for information about fibroid treatments and booked a medical consultation for uterine fibroid embolization (UFE). She learned she'd be a good candidate for the procedure since she had multiple fibroids, one the size of a grapefruit.

UFE can target both the volume of fibroids and the bleeding they cause, said Marshall, who works in the growing field of minimally invasive gynecologic surgery with aims to provide women with more options and less complicated recoveries.

'"I always encourage people with fibroids to join support groups or networks of patients who have similar diagnoses.'

"In UFE, they'll put a catheter into the blood vessels that go to the uterus and release these little beads that block the blood flow, usually to the whole uterus, though they do try to target the biggest fibroids," she explained. "Over time, the center of the fibroid dies off from the lack of blood supply and it shrinks in volume. That procedure works really well for bleeding. Over the course of at least three to six months—sometimes up to a year—fibroids can shrink in volume and sometimes soften."

Another approach to treat fibroid symptoms is to target nerves and muscles in the pelvis, according to Allyson Augusta Shrikhande, M.D., a physical medicine and rehabilitation specialist and the chief medical officer of Pelvic Rehabilitation Medicine, a nationwide network of clinics based in Dallas.

"Our non-operative approach treats the pelvic floor muscles and nerves to reduce the pain associated with fibroids," she said. "To do this, our pelvic pain specialists provide an internal evaluation and use ultrasound to guide treatment externally, targeting the pelvic nerves and muscles that are irritated and inflamed due to persistent pelvic pain from conditions such as fibroids. 

"Essentially, the treatment works to increase blood flow, helping heal the nerves and muscles of the pelvis."

Why patient advocacy matters for women with fibroids

If multiple treatment options exist for fibroids, why do so many women receive hysterectomies or no treatment at all?

To combat this large-scale health issue that disproportionately impacts women of color, Rep. Yvette Clarke, D-N.Y., introduced the Stephanie Tubbs Jones Uterine Fibroid Research and Education Act of 2021. It hasn't been enacted but it aims to increase research funding for and public education around fibroids.

According to research published in the Journal of Women's Health, Black women experience the onset of fibroids at a younger age, with more severe symptoms and higher rates of surgery and hospitalization. As of 2019, the National Institutes of Health allotted $17 million in fibroid research, putting fibroids in the bottom 50 of 292 conditions studied.

Marshall said these facts underscore the necessity for women to speak up about fibroids—not only to their doctors but to each other.

"I always encourage people with fibroids to join support groups or networks of patients who have similar diagnoses," she said. "You can hear other perspectives and experiences, which can be a helpful tool to make sure you're finding the right treatment option for you."

Receiving treatment for her fibroids gave Bailey a new lease on life. The battles and victories of her health journey continue to motivate her to share her story and deliver a clear message to all: There's no good reason to keep quiet about fibroids.

"It's been life-changing to do something about my fibroids," she said. "I'm more excited about doing things and going places now. I just wore white to the American Ballet Gala—I couldn't have done that 10 years ago. I thought it was really important for me to talk about my journey on TV in order to encourage women to have the fibroid conversation.

"It turned out, pretty much everyone on 'The Real Housewives of Atlanta' cast at the time was dealing with fibroids, but it just wasn't a conversation. It was something women were suffering with in silence. Now, everywhere I go, I'm The Fibroid Lady, and people tell me, 'I decided to do something about my fibroids after seeing you talk about it on TV.' Through my story, I hope I'm able to inspire and encourage a lot of other women all over the world."