As a child, Sateria Venable listened to her mother and aunt talk about their excessive bleeding, crippling cramps, and vomiting they experienced each month when they had their period.
When Venable started to menstruate, at age 11, things were no different.
“People assume that periods aren’t an issue for teens starting puberty, but I had cramps as an 11-year-old that were like contractions,” she says. “I just assumed that was normal.”
In her teens, Venable started taking birth control pills, which helped control the crippling symptoms that her period brought each month. But it was a temporary fix.
Throughout college, Venable’s periods got progressively worse. When she finally saw a doctor, in her mid-twenties, she was diagnosed with uterine fibroids, benign tumors that develop in the uterine cavity that are usually small, but can grow to the size of a football.
She had never heard the word “fibroid” before, even though women in her family were experiencing the same symptoms.
Extremely Common, Rarely Discussed
Fibroids affect as many as 80 percent of women and people with uteruses by the time they’re 50, though women of certain races and ethnicities are more likely to develop them, according to the Office on Women’s Health.
Black women like Venable are three times more likely than white women to develop uterine fibroids, according to the Mayo Clinic. A study published in May 2023 in JAMA Network Open, which included nearly 1,000 women, found that, overall, 20 percent of females have fibroids during their reproductive years. But nearly 36 percent of Black women, 22 percent of Asian women and 13 percent of Hispanic women had fibroids, compared with about 11 percent of white women.
Fibroids cause many of the symptoms Venable, her mother, and her aunt all experienced during their monthly cycles — very heavy bleeding that can lead to hemorrhaging (which happened to her mother), the extremely painful cramps that caused Venable to miss school, and irregular cycles. Fibroids can also put a woman at increased risk of infertility, preterm labor, and cesarean section deliveries.
The doctor who diagnosed Venable with fibroids advised her to get a hysterectomy, a major procedure that would remove her uterus. Venable was 26 at the time.
“My eyes were huge. I thought, how can you tell someone in their mid-twenties to have a hysterectomy?” she says.
She didn’t go through with that surgery, but found another surgeon who recommended a procedure to remove the fibroids that had been causing her so much pain for more than a decade. Venable, who grew up in Baltimore, was living in Chicago.
It was a “heartbreaking” experience, she recalls.
“They took me into the surgery suite, and when I woke up, (the doctor) told me they couldn’t remove the fibroid because she had punctured my uterus by accident and had to stop the surgery,” she explains.
Looking back, Venable wishes she’d known to ask her surgeon how many fibroid surgeries she had performed, since the operation requires specific training during residency or a fellowship.
For the next 10 years, Venable managed her periods the best she could by going back on birth control pills. She was afraid of having to undergo surgery again after her first operation, in 1996, had gone so poorly.
“It managed my bleeding for a while, until it didn’t,” she recalls, remembering the morning in 2001, when she was boarding a bus and felt blood pooling between her legs — her first experience with breakthrough bleeding, another symptom of uterine fibroids.
She went off the pill and started bleeding through a pack of pads every day for months before she finally sought out a doctor with more experience to evaluate her again. Later that year, she underwent her second fibroid surgery, this time successfully removing some of the tumors that were causing issues.
But just nine months after the operation, the heavy bleeding started again. Now armed with a better understanding of how to vet her doctors, she found a physician in Northwestern University’s medical system whom she trusted.
He tested her hemoglobin, a protein that makes up red blood cells which is critical to blood being able to deliver oxygen throughout the body, and it was extremely low.
“He looked at me and said, ‘Sateria, you cannot continue to live like this,’” she says. “It was so sad, but also a big relief.”
Then he took two steps that reassured her that he was competent enough in uterine fibroids to perform her third surgery. The first was sending her for an MRI and explaining to her exactly what he was looking for on the scan.
“Through all this heartache no one had ever told me that an MRI can identify the blood supply to each fibroid. Any good surgeon will want to identify that before going into surgery,” says Venable.
After he’d read her MRI images, he drew her a diagram of exactly how he planned to remove her tumors while keeping her uterus — which she had been advised to remove 10 years prior — intact. In 2006, at age 36, she underwent her third uterine fibroid surgery.
“The experience of having my third surgery and having to monitor the medical advisory during it made me ponder: Why was it so difficult to find someone to treat me and find solutions for something that was incredibly common?” she says.
Creating the Resource She Needed
Venable had become an expert researcher through her own fight to find answers and adequate treatment for a condition she was shocked to find out was extremely common. She decided to start a blog to share the information she’d found with other women who, due to lack of specialty in uterine fibroids, had to collect their own information on the topic.
“Every month it was like a fact-finding mission,” she notes.
When she researched statistics for the first time, she knew she was onto something.
“I was further shocked to see that 80 percent of women of color, and at least 50 percent of all women by age 50 will have fibroids. I was wondering why people aren’t screaming from the rooftops,” she says.
She was also shocked at how difficult it had been for her to find a specialist in a city like Chicago, the third-largest city in the United States, and one where some of the top medical facilities are located.
Though she knew the statistics, Venable was still surprised by the number of women in her circle who responded to her blog as if it were “a breath of fresh air.”
In 2012, when she lost her job in Chicago, everything started to align in Venable’s life. She was being pushed to take her blog to the next level and decided to move back home to Maryland.
“I figured it would place me near Washington, DC, the advocacy hub of the country,” she says.
The same weekend she moved home, Howard University was hosting a fibroid conference. She hadn’t even had a chance to unpack yet, and she attended. She took it as a sign that she was on the right path.
Venable had just decided to transition her blog to a foundation called the Fibroid Initiative, which was soon renamed the Fibroid Foundation. Her first act was to shed light on menstrual health discussions and to make the topic less taboo.
“I’m breaking that cycle, because keeping it out in the open takes out the stigma and helps women not feel so alone, and it helps find solutions,” she explains.
Redesigning Research
Today, the main scope of the foundation’s work is to help patients get the information and resources they need, whether they suspect they have fibroids or have already been diagnosed.
When possible, the Fibroid Foundation connects people with expert surgeons and other healthcare providers in their city and arms them with a list of questions they should ask at their first appointment — questions Venable wishes she’d had at the beginning of her own journey.
They also make sure people have access to the most up-to-date information and research on fibroids.
“It’s important to share this information, because it’s always evolving,” says Venable, who is now consistently involved in some of the top fibroid research in the United States, advocating for the patient perspective to be taken into account.
“The patient voice has largely been missing from research studies. That’s a void that we are trying to fill,” she says. “One of the key experiences I had that was life-altering for me was how much information from my personal experience could lend to a research study. I had no idea how valuable my experience could be.”
The Fibroid Foundation is also working to get more diversity in future fibroid research.
“The reason there is so much literature on women of African descent and women of European descent with fibroids is because those are the only ethnic groups we have some level of data on,” Venable says, noting that this needs to change.
She and her team recently worked with the Mayo Clinic to design one of the first studies on uterine fibroids in Latina women.
“Oftentimes fibroids are framed as a health concern that affects women of African descent, but it affects all women,” she says. “We need more research to uncover the degree to which fibroids are occurring in all women of different races.”
Pushing for Political Action
In 2020, the Fibroid Foundation started meeting with members of Congress to promote a bill that would fund community education and research on uterine fibroids through the National Institutes of Health (NIH). The bill will be reintroduced for a third time in July 2023, and Venable hopes it will receive bipartisan support. If passed, it would allocate $150 million toward research over five years, which works out to be about $1 per year per person who experiences uterine fibroids.
“Fibroids are the most common gynecological tumor, and the research funding should be representative of the community impacted,” she says.
In addition, the Fibroid Foundation is working with New York Representative Grace Mang, who introduced a bill in May 2023 that, if passed, would declare May as menstrual health awareness month.
“We want to anchor a lot of our focus on menstrual health awareness month because it’s bigger than fibroids,” Venable says. “We’re trying to combat a centuries-old stigma that menstruation is bad. It’s a life-giving process that we want to uplift.”
