Fibroids: Speaking Out

Illustration by Lorna Lowe

Women who have silently suffered and battled uterine fibroids are encouraging each other this July, Fibroids Awareness Month, and beyond to speak out and become advocates for themselves and for a solution. For Black women of childbearing age, about 80 percent of whom may suffer from fibroids, widespread awareness of the diagnosis is long overdue and could lead to better treatment and relief.

Fibroids are non-cancerous growths in the muscle of the uterus which can be small and undetectable or can grow to the size of an apple or even bigger. They can be treated via a myomectomy, which removes just the fibroids, a hysterectomy, which removes the uterus completely, or by less invasive procedures including uterine artery/fibroid embolization, laparoscopic ablation or focus ultrasound ablation. While not life-threatening, fibroids can lead to anemia, make intercourse painful, and may cause pregnancy complications in some cases, according to the American College of Obstetricians and Gynecologists.

When I first found out that I had fibroids, the topic was taboo, and there was a stigma associated with the diagnosis. I was 24 years old when the lab technician at my doctor’s office nonchalantly told me. I had expected this day might come, since I’d always had such horrible menstrual 
pain and because many of the women in my family had suffered the same pain – with the eventual diagnosis and removal of fibroids.

That day I was in for a routine follow-up, because during my previous visit I made it clear to my doctor that I couldn’t take it anymore. Not only was I suffering the worst pain ever during menstruation, but I was even experiencing pain and heavy bleeding in between my periods. I’d already tried holistic remedies, changing my diet, exercise – you name it. Nothing helped and I was in absolute distress. So that day in the doctor’s office I was searching for solutions.

A disease marked by racial disparities

The tears started to flow when the lab tech announced my diagnosis as she pointed to the blurry sonogram screen. “Why are you crying?” she asked. “It’s common for Black women.” I gave her a stern look and wiped my face. I was livid at her casual response, and I was scared of what my future would be like with fibroids – would I have to get surgery like some of my family members or did this mean I would suffer forever? All of these possibilities ran through my mind at once. I was also extremely frustrated because relief did not seem to be anywhere in sight. The doctor suggested trying birth control to regulate my periods and help with the pain but that was the same option I’d been offered before and it didn’t help. The rest of the day was a blur for me but the lab tech’s words remained in my head. She was right, it was common, far more common for women that looked like me than I had realized.

According to Dr. Elizabeth A. Stewart, M.D., chair, Division of Reproductive Endocrinology, professor of Obstetrics and Gynecology at the Mayo Clinic College of Medicine, fibroids continues to be a disease marked by racial disparities, as they are more common and more severe in women of color.

“Nobody’s really been able to understand that [why fibroids are more common in Black women],” she says. “The genetics of fibroids appear to be pretty similar for Black women and white women, there are some people that have speculated that there could be some lifestyle factors [including diet, exercise and weight] that make a difference and people have also wondered whether vitamin D deficiency could be playing a role, but nobody really knows that answer.”

Fibroids are also the leading reason why women undergo a hysterectomy; more than three times the number of surgeries are done to remove fibroids than to remove cancerous growths. But hysterectomies, in addition to foreclosing pregnancies, carry long-term risks such as heart disease, especially for women who have the surgery at a young age. Now there’s a search for better treatment options.

The FIRSTT study and COMPARE-UF fibroid registry reflect Dr. Stewart’s recent research in this area. FIRSTT looks at the comparative effectiveness of multiple fibroid interventions, while the registry compares results for uterine artery embolization and MR-guided focused ultrasound, two other treatment options.

“We discovered in our FIRSTT study that having pain before treatment is an important predictor of adverse events during treatment,” she says.

Another area of research is the genetic link. “There are several important genes that appear to make women at risk for uterine fibroids.”

“The major fibroid gene is a gene called MED12. It looks like it’s involved in fibroids probably close to 75 percent of the time but people don’t yet know how to target that genetic change to make a difference in the treatments.”

Advocacy and research

Get a second opinion or learn about simpler treatment options, Dr. Stewart advises. And advocacy should help promote more research.

“I think the other things that women could do is to be advocates; again, the more you can say ‘this is a problem that affects my life and the life of many women I know, we need better options’ – I think we’ve seen that change in autism research in recent years or again looking at HIV and AIDS, with people who were advocating for more research that really brought about changes there,” she says.

At the time I received my diagnosis, I realized there weren’t any known support groups that were discussing the hardships of living with fibroids. Now, almost seven years later, support can be found in a hashtag on social media and from organizations such as The White Dress Project, which was started by fibroid survivor Tanika Gray.

Gray was diagnosed at the tender age of 17 and was the only surviving child of her mother, who had lost her two sets of twins due to fibroids.

“In July of 2013, I had 27 fibroids (of various sizes) removed in an emergency myomectomy and today I have at least nine new ones,” Gray says. “Again, faced with only surgery as my option, after my invasive surgery and very cruel recovery I knew that I wanted to be a champion for women suffering with fibroids.”

Since its inception, The White Dress Project has created a community so women and their partners no longer have to suffer in silence. It allows them to express some of the realities of the condition, including being prepared with extra clothing, looking pregnant when you’re not, missing work and the horrifying anxiety behind wearing white.

“The thing about fibroids is there are so many moments we try to keep private, but it is inevitable that it will become public,” Gray says.

“Wearing a white dress won’t cure fibroids but if we rally this community together, our voices will be heard. Our white dresses are symbols of hope that we will find a cause and cure!”

Presently, I still find myself curled up in my room in horrible pain when my period arrives and the days in between. I still experience heavy bleeding, anemia, bloating and the anxiety of knowing that each month I’ll be in pain, but as I continue to search for a treatment and relief that works best for me, the hope of an answer keeps me going.

For the next generation of women in my family, more research on fibroids could lead to a better, more comfortable life, free of devastating pain and suffering.

Amelia Rawlins is assignment editor for News 12 Networks. This article was written as part of the 2018 Health Reporting Fellowship of the Center for Community and Ethnic Media at the Craig Newmark Graduate School of Journalism at CUNY and funded by a grant from News Corp.

2 Comments

  1. Great read and useful information.

  2. Thank you for writing this. There is so much emotional and physical discomfort that comes with fibroids, not to mention the nonchalant attitudes of most medical professionals toward the diagnosis. I’ve been able to maintain a livable life during my cycle thanks to herbs and teas, but before I took the time to learn about herbal remedies, my life was a wreck.

    I hope that this becomes something worth curing instead of just another “issue” that women of color have to “deal” with for years to come.

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