July is Fibroid Awareness Month, a time advocates work to strip away the stigma of talking about an intimate medical condition affecting millions of people worldwide.
“Our stories have power,” said Jonelle Henry, the D.C.-based director of programs for The White Dress Project, the first fibroid advocacy organization to author legislation that established July as Fibroid Awareness Month 10 years ago.
Fibroids are tumors that grow in and around the wall of the uterus (womb).
Made up of muscle cells and fibrous tissue, the medical term for fibroid is leiomyoma or “myoma.” According to the U.S. Food and Drug Administration, uterine fibroids are the most common benign (meaning non-cancerous) tumors in women of childbearing age.
Further, the New York Department of Health reports, symptomatic fibroids are two to three times more common in African Americans than Asian, Hispanic or white people.
Fibroids develop at a younger age and grow faster in African Americans and by age 50, an estimated 80-90% of African-American women will have fibroids.
It is possible to have fibroids without symptoms, like Medina Adrienne, a 44-year-old consultant in Atlanta who was diagnosed with fibroids after an emergency room visit in 2015. She made the trip to seek medical attention after noticing a small bump on her stomach while laying down.
“I am a legacy fibroid holder,” Adrienne said, “that’s what I’ve coined it.”
When Adrienne was 12 years old, her mother had a hysterectomy to remove fibroids, enduring intense pain after surgery.
“I made a pledge to myself at that age that I wouldn’t get fibroids,” Adrienne told The Informer.
Years later, Adrienne, who chose not to have children, says her fibroids are so large, she appears to be seven months pregnant. She says her two fibroids, attached outside her womb, have progressively and slowly gotten larger, now measuring 16cm and 27cm; both fibroids are larger than a grapefruit, which measures 10cm.
While treatment options for fibroids can include surgery, Adrienne has chosen not to surgically remove her fibroids, which would require a vertical and horizontal cut because of their size. Instead, she has radically changed her life by decreasing work and environmental stressors, being contentious about the chemicals she uses in and on her body; eliminating alcohol; working on her food addiction; and living below her means.
“I see this as a spiritual journey,” she said, prioritizing rest and creating a community aligned with her new life. “I stopped beating myself up. I was frustrated for a long time. Now? I accept it.”
The Importance of Sharing Narratives: ‘Our Stories Lead to Action’
Earlier this month, actress Lupita Nyong’o and tennis star Venus Williams added their voices to the chorus of African-American women sharing their fibroid stories publicly.
Nyong’o, who discovered she had uterine fibroids in 2014- the same year she won an Academy Award- had surgery to remove 30 fibroids. She now advocates for more funding for research, studies, and public awareness.
“I’m speaking up about uterine fibroids. This is my story,” Nyong’o wrote on Instagram, about her 2014 experience. “This Fibroid Awareness Month and beyond, I hope my experience will resonate with anyone else who has ever felt dismissed, confused or alone. And I hope to seek answers for the far too many women dealing with uterine fibroids (80% of Black women and 70% of white women by age 50!). We deserve better. It’s time to demand it. Silence serves no one!”
While researchers do not know what causes fibroids, multiple factors could affect their growth, including age, family history/genetics, weight, hormones, high blood pressure, and diet.
Fibroids, which can be a single tumor or many, range in size from a small seed to a large fruit, and can cause heavy bleeding, severe pain, discomfort and reproductive problems, including infertility and miscarriage.
While fibroids may be detected during a routine pelvic exam, additional testing, like an ultrasound or MRI may be needed to determine the fibroid size and best treatment options.
Dr. Cheruba Prabakar, known as “thefibroiddoc” on social media, encourages self-advocacy when medical professionals are dismissive.
“Don’t settle for what your doctor says,” she said. “Seek a second opinion, seek a third opinion, find out what’s out there.”
USA Fibroid Centers are offering free fibroid screenings through July 31.
“You are told from an early age not to talk about stuff like this,” Henry said. “Not to talk about heavy bleeding, or your period, or anything that happens below the belt. As a result, we experience shame and embarrassment, but talking about our bodies is how we start to heal.”
The White Dress Project D.C. director of programs emphasized the importance of spreading fibroid awareness. Fibroid warriors sharing their experiences, she noted, can influence clinical trials and research, people making appointments, and overall advocacy.
“Our stories lead to action,” Henry said. “It’s not the end after someone tells their story, it’s the beginning.”