Painful periods. Flood-like currents. Uterine growths the size of a melon. We know this sounds like a bad premenstrual dream, but these are just some of the life-changing symptoms that come with uterine fibroids.
Sateria Venable knows firsthand how disruptive fibroids can be. Before becoming founder and CEO of the Fibroid Foundation, Venable underwent her third surgery to remove recurring fibroids. She also had a hard time finding health care providers who specialized in treating fibroids or someone who would talk to her about fertility-preserving treatments. She was only 26.
Venable felt completely alone. At the time, she had no idea that up to 8 in 10 women would develop fibroids by the age of 50. It wasn’t until Venable began sharing her experiences with fibroids online that she realized she wasn’t alone—and that there were many women looking for answers.
In 2013, Venable founded the Fibroid Foundation to bring the community together and advocate for a cure and policy changes to improve the lives of people with fibroids.
Now, after 12 years, the Fibroid Foundation has expanded to 181 countries and continues to advocate for research and legislation, including leading efforts to introduce the Fibroid Bill in the U.S. House and Senate.
We spoke with Venable about the advances in fibroid health she’s seen over the years and what women need to know about this common gynecological condition.
What follows is our interview, edited for clarity and length.
HealthyWomen: Your LinkedIn profile states that you turned the diagnosis of uterine fibroids into a global movement by founding the Fibroid Foundation. How did your experience inspire you to start the organization?
Sateria Venable: Well, I was a frustrated patient. I had just had my third fibroid surgery and was probably a little shocked that the fibroids kept coming back.
The third surgery was an open myomectomy, which involves cutting open your stomach, lifting your uterus out of your body, cutting the fibroids out of your uterus, stitching the uterus back together and putting it back into your body. And it’s as terrible as it sounds.
There are women who undergo multiple myomectomies to get pregnant, but I had a very difficult time finding someone who would do the surgery – rather than just offering a hysterectomy – and I lived in Chicago. At the time, I thought, if I’m in a big city and having trouble finding a fibroid surgeon, what’s wrong?
I started blogging about my experiences from month to month because it was very different from month to month. I had severe anemia due to heavy periods, then surgery and recovery. And when I started blogging, women really spoke up and said, “The same things happen to me.”
I thought I was alone and that’s when I thought, I have to formalize this experience that I’m having and try to help other women too.
HW: With the foundation, you advocate for more than 26 million women in the United States and people with fibroids around the world. What’s new in fibroid innovation that you think women should know?
Venerable: I really want them to be aware that there are medical therapies. I think one of the most pressing issues is that severe anemia can occur with symptomatic fibroids. Many women and menstruators are diagnosed with fibroids when they are in crisis, and Mayo Clinic doctor Elizabeth Stewart advised me that it’s not a good idea to make decisions when you’re in crisis because you feel rushed.
Many women and menstruators who are diagnosed with fibroids hear the word “fibroid” for the first time. And then they need to not only understand what that means, but also start learning about treatment options while they’re unwell.
The innovation that I think really needs more attention is the medical therapies that have been approved during the pandemic. In healthcare we refer to them as medical therapies, but the term “fibroid pill” seems to have more traction in our community.
There were two pills from two different manufacturers that were approved and I look at them as tools in a toolbox that if you are severely anemic and need to prepare for surgery or are trying to understand what steps to take but don’t feel well, you can use this medical therapy specifically for fibroids that will greatly or dramatically shorten your period or stop it altogether to give your body a chance to recover so that you can then have a clear idea of what steps you want to take next.
And it’s also a great bridge through perimenopause. All women – not just those with fibroids – can experience very heavy menstrual bleeding, which can severely impact anyone’s lifestyle. And so medical therapies can also help to stabilize this.
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HW: You have said in previous interviews that a hysterectomy is not the only solution to treating fibroids. What do you want women to know about treatment options?
Venerable: I think the most important thing is to find the right information and the right provider.
At the Foundation we are often contacted by women who say they have one or two fibroids and the only option they have been given is a hysterectomy. And at the other end of that spectrum, we have a medical advisory board and some of these doctors have removed 30, 40, 50 fibroids and left the uterus intact.
I think it’s very, very important that women who have been diagnosed with fibroids need to see either a fibroid specialist or a reproductive endocrinologist, which is another specialty that is particularly useful for women and menstruators who want to become pregnant.
HW: As a leader in the women’s health community, what is the hardest part about activism for me?
Venerable: Earlier in my career, having no background in healthcare, I worked in construction management, and having the courage to switch gears, follow my heart and act on that need has given my life a quality of life that makes me feel like everything is just flowing in the right direction.
That’s why I never think activism is hard. It is truly a joy and a privilege. And for me personally, it ticks all the boxes of being curious and giving something back.
I am grateful to be in this role and to see the change we have been able to make.
HW: Tell us the biggest misconception about fibroids that you would like to correct.
Venerable: The biggest misconception is that this is just a black woman’s disease. Fibroids affect every single ethnicity, and we don’t even have the data to show the true impact for most communities. However, as The Fibroid Foundation reaches over 180 countries around the world, it is clear that our community is cross-culturally and ethnically diverse.
Take our quiz: True or False: Uterine Fibroids >>
HW: In addition to being a CEO and patient representative, you are also an inventor. Tell us about the underwear you designed specifically for women with fibroids.
Venerable: It is a range of underwear for women with severe flow problems after pregnancy and mild incontinence. We therefore make sure that they are both pretty and functional.
The product is not on the market yet, but we are close. We are currently in the process of finding the best reference point for the underwear and that is an ongoing process.
I’d like to launch it next year and it’s taken some time, but I feel really good about where we are and the team we’re working with. I’ll keep you updated as we move forward and hope that what we’ve learned will, in turn, help us deliver a product that will be very helpful to our community as a whole.
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