Uterine discomfort and heavy bleeding has been a constant presence in Renee Brown Small's life.
"I was in my 20's and I couldn't go to the beach with my girlfriends because of the bleeding," says Small.
Small is one of many African American women who suffer with fibroids— non-cancerous uterine tumors that can grow as large as a cantaloupe and often cause pelvic pain, along with other symptoms.The prevalence of fibroids — especially among African American women, who develop them at a higher rate — was a topic of discussion at the recent White House sponsored United State of Women Summit.
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Some 20 to 80 percent of women will develop fibroids by age 50, according to the Office of Women's Health at the Department of Health and Human Services. This year, The National Institutes of Health estimates it will spend around $10 million dollars in research on the condition — $4 million dollars less than in 2012.
According to the American College of Obstetrics and Gynecology, fibroids occur more in African American women than white women, as well as at a younger age. Doctors are unsure why, but think genetics could be a factor.
For Small, the disease has, at times, been debilitating.
Small was 27 years old when she went to her doctor with complaints of pain. She thought she was pregnant. She found out she had fibroids.
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"I told the doctor, I'd take the fibroids because at the time I didn't want to be pregnant, but I regretted that statement later," she said.
A study by the Mayo Clinic and the University of North Carolina of more than 900 women found that African American women had more severe symptoms, missed more days from work and were unsatisfied with information provided to them about fibroids than white women. They also wait four or more years before seeking medical treatment after diagnosis.
Small waited two years after her diagnosis before she got medical treatment. She had eight fibroid tumors, the largest one grape-fruit sized, surgically removed through a procedure called a myomectomy. Symptoms were minimal at first, but as time passed they became unbearable.
When she told her family, she was surprised by how often phrases such as "Your grandmother and cousins had fibroids" and "It runs in the family" was a common reaction.
African American women have become so accustomed to tales of fibroids in the family that a diagnosis is often seen as commonplace said Dr. Angela Marshall, a physician in Silver Spring, Maryland.
Marshall also suffered with fibroids and said that misperception coupled with a historic mistrust of doctors among the African American community factor into why African American women often put off getting treatment.
"Historically, African American women have been culturally conditioned to endure hardship and discomfort. 'Oh quit complaining,' 'We all go through that.'" Marshall said. "Sometimes our tolerance for enduring the pain and disability associated with fibroids can be to our detriment."
In order to break this cycle that has been passed from generations and become proactive about health, Marshall said African American women should find a doctor whom they can relate to as well as trust.
"It's important to know that if the fibroids have become such a burden that they cause disability — extreme pain, dangerous anemia with the associated fatigue and other symptoms, and/or cause missed work, then maybe it's time to consider taking action," Marshall said.
Small, now 38, has had not a recurrence of tumors and has two children. As a co-founder of the Fibroids Project, an online support group, she wants to help women become fibroids-free by giving them the information they need about the condition and treatment options available.
Her biggest advice is for women to not wait and get treatment sooner than later.
"It doesn't get better; it only seems to get worse. Look at all the options and get it handled immediately because it doesn't get any better and they don't go away on their own."