WASHINGTON — Experts say it is the most overlooked and underfunded public health issue. According to the National Institutes of Health, 26 million American women between the ages of 15 and 50 suffer from uterine fibroids.
The non-cancerous tumors can be debilitating and lead to major blood loss, painful menstrual cycles and fertility problems. But some prominent local women are opening up about their journeys to let you know, it's not normal. Period.
Listening to your body
Many of you know I was off the air for 2 months this summer. I had a hysterectomy to remove an aggressive 15-centimeter fibroid. I started feeling discomfort during the height of the pandemic, but like so many women - I just pushed through.
My message to you: listen to your bodies and don't delay your care. I'm eternally grateful to my gynecologist who knew there was a problem before I did. I am lucky.
So many women suffer for decades and almost died because of it. Here are some of their stories.
Pushing through the pain
Nicole Mosley, better known as DJ Heat, is at the height of her career. From rocking out arenas for the Washington Mystics and Wizards to spinning at stadiums worldwide; the 42-year-old D.C. native was even named one of Washington's TikTok stars with more than 8.6K followers. But behind the music and infectious smile,
“I just push through the pain,” she said.
The pain is caused by Fibroids. The non-cancerous tumors develop inside a woman’s uterus and can grow as large as a grapefruit. Heat says the pain has dominated her life and even one of her biggest DJ moments.
“This show in Australia when I was DJ'ing with Mya and this photographer got this amazing picture of me with the big crowd, you know the tour photo everyone dreams of having,” Heat explained, “every time I look at that photo I remember how I got terribly sick when we got off stage."
DJ heat was first diagnosed with fibroids at age 18. A doctor in college told her. “All she said was, ‘well it's just going to get worse as you get older,” she recalled, “I was like are you kidding me?!”
According to the White Dress Project, 70% of all women and 90% of black women will develop fibroids in their lifetime. Symptoms include painful periods, heavy bleeding, enlargement of lower abs, frequent urination, painful intercourse, lower back pain and in rare cases infertility. (source: US Dept. of Health and Human Services).
Years of pain without help
“I almost lost my life behind it,” said India Blocker-Ford.
Blocker-Ford is a 37-year-old mother of four in Southeast who runs a modeling and mentor program. She says she complained about her fibroid discomfort to her doctor for 2 years.
“I was like, I take care of everybody but who’s going to take care of me?” she asked.
It wasn’t until an emergency trip to the hospital that this community caregiver finally got the help she needed. Blocker-Ford passed out at a parade. When she came to, she drove herself to George Washington University Hospital. “When I got out of the car my legs, they like bucked,” she recalled, “I was like ‘God please let me make it to the front door."
Her fibroid led to a pulmonary embolism – a massive blood clot that could have killed her.
“They said they laid me down on the table and could see my fibroid cutting off my circulation from my chest to my legs,” recalled Blocker-Ford, “the doctors said, ‘you won't be fine until we get this fibroid out.”
Since Blocker-Ford had major surgery to remove the pulmonary embolism, doctors put her on blood thinners (which she said she’ll continue taking until summer 2022) and scheduled her hysterectomy in June.
India had her second major surgery just days after I did. I didn’t know the details, but I learned that India, a community leader and news contact, had a serious life or death experience in the hospital some time ago. It wasn’t until she reached out to me during my medical leave, that we discovered we both had hysterectomies. We shared stories and learned, India’s statistics were just slightly more advanced than my own. The only difference in our stories is that I had a doctor who acted quickly to diagnose my condition and remove my fibroid. Sadly, she didn’t.
“I want doctors to tell me what caused it,” said Blocker-Ford, “I want to know because I have 3 daughters. Are my daughters going to have it because my grandmother had it, my mother did, her sisters did?!”
What causes uterine fibroids and how do you treat them?
Unfortunately, it is still unclear what causes fibroids, but clinical research suggests genetics or hormones. Although some groups like the White Dress Project, suggest diets that could help lower your chances or control fibroid growth.
Doctor Mildred Chernofsky is with the Center for Gynecologic Oncology and Pelvic Surgery at Sibley Memorial Hospital.
“My involvement with patients with fibroids is either going to be patients who have a more difficult situation or perceive themselves as having a difficult situation like larger fibroids or hey I bleed a lot or someone who’s had numerous prior surgeries,” explained Dr. Chernofsky. The doctor said it is her mission to empower women about their reproductive health,
“Even if I’m running late because guess what? This is not an ATM transaction this is medical care.”
Fibroids can be treated in numerous ways. A myomectomy is a minimally invasive procedure to remove the mass. Other treatments involve birth control to control bleeding or drugs to shrink the fibroid. But for India and DJ heat, removing the uterus was the only option.
“He asked me straight up do you plan on having kids?” said DJ Heat recalled a conversation with her current doctor, “I said no.”
Advocating for help
Now, Heat is using her platform to share her story and help other women advocate for themselves.
“I learned through my transparency it gives other people the courage to speak out,” she said, “I know me as a black woman, as a masculine black gay woman because people like to joke that gay women who look like me don’t go through feminine women problems. Listen, I’m here to speak out for everything that I represent as a black, gay woman and for us to not be afraid. If a doctor shrugs you off - especially black women they don't take our pain seriously - go research, find another doctor.”
Heat finally found a doctor who listened. Her hysterectomy is scheduled for late November.
“I'm ready to be a brand-new DJ Heat after this. Y’all gonna see me doing cartwheels and flips after this!’ she laughed.
There is still a lot of research that needs to be done so there's a proposed bill working its way through Congress that would dedicate more money to address what proponents call this public health crisis.
You can learn more about The Stephanie Tubbs Jones Uterine Fibroid Research Act of 2021 and how to support, here.
Even with the love and support from my family and friends, and a wonderful team of caring doctors who answered all my questions, I still felt isolated and overwhelmed in the 2 months after my prognosis and before surgery.
One resource that helped me tremendously and filled in those gaps is the White Dress Project. The non-profit’s Instagram page connected me to other fibroid warriors and offered me the education, advice, hope, support from a community of sisters and a reminder that you don’t have to suffer in silence.
Take good care.
DMV area clinics have seen more women interested in taking control of their future, with some clinics having seen as much as a 50% increase over the last year.