Painful periods. Flows like floods. 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 associated with uterine fibroids.
Sateria Venable knows first hand how bothersome fibroids can be. Before becoming founder and CEO of The Fibroid Foundation, Venable had her third operation to remove fibroids that kept coming back. She also had trouble finding health care providers who specialized in treating fibroids or anyone who would talk to her about treatments that protect fertility. He was only 26.
Venable felt completely alone. At the time, she had no idea that up to 8 out of 10 women will develop fibroids by age 50. It wasn’t until Venable began detailing her experience with fibroids online that she realized she wasn’t alone — and there were plenty of women looking for answers.
In 2013, Venable started The Fibroid Foundation as a way to bring the community together and advocate for a cure and policy changes to improve the lives of people with fibroids.
Now, 12 years later, The Fibroid Foundation has expanded to 181 countries and continues to support research and legislation, including leading efforts to introduce the Fibroid Bill in the US House of Representatives and Senate.
We spoke with Venable about the advances in fibroid health she’s seen over the years and what women should know about this common gynecological condition.
Our interview follows, edited for clarity and length.
HealthyWomen: Your LinkedIn profile says you turned your uterine fibroid diagnosis 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 I guess I was kind of shocked that the fibroids kept coming back.
The third surgery was an open myomectomy, where your abdomen is cut open, your uterus is lifted out of your body, the fibroids are cut out of your uterus, the uterus is sewn back together and placed back into your body. And it’s as horrible as it sounds.
There are women who have multiple myomectomies in their attempt to conceive, but I had a very hard time finding someone to do the surgery – rather than just a hysterectomy – and I lived in Chicago. At the time, I thought if I was in a large metropolitan city, and I am are you having challenges finding a fibroid surgeon, what exactly is going on?
I started to write my experience from month to month, because from month to month it was very different. I had serious anemia from heavy periods, post surgery and recovery. And once I started blogging, women started really speaking up and saying, “The same things are happening to me.”
I thought I was alone and then I thought I should make this experience official and try to help other women too.
HW: Through the foundation, you support more than 26 million women in the United States and people with fibroids around the world. What’s new in fibroid innovation that you want women to know?
Portable: I really want them to know that there are medical treatments. I think one of the most pressing issues is that if you have symptoms of fibroids, you may have severe anemia. Many women and menstruators are diagnosed with fibroids when they’re in a crisis, and Dr. Elizabeth Stewart at the Mayo Clinic advised me that it’s not a good idea to make decisions when you’re in a crisis because you feel rushed.
Many women and menstruators who have been diagnosed with fibroids are hearing the word “fibroids” for the first time. And then, in addition to what that means, they have to start learning about treatment options while they’re not feeling well.
So the innovation that I really think needs more attention is the medical treatments that were approved during the pandemic. In healthcare we refer to them as medical treatments, but the term “fibroid pill” seems to have more resonance in our community.
There were two pills from two different manufacturers that were approved, and I see them as tools in a toolbox where if you’re severely anemic and you have to prepare for surgery or you’re trying to figure out what steps to take and you’re not feeling well, you can do this fibroid-specific medical treatment that will significantly or drastically reduce your period or completely stop your mind. to take the next one.
And it’s also a great bridge through menopause. All women—not just women with fibroids—can experience very heavy menstrual flows, and this can be very disruptive to anyone’s lifestyle. And so medical treatments can also help stabilize that.
Read: Comic: Annie Has Anemia >>
HW: You have said in previous interviews that hysterectomy is not the only solution for treating fibroids. What do you want women to know about treatment options?
Portable: I think the most important thing is to find the right information and the right provider.
Often, at the institution, we are contacted by women who say they have one or two fibroids and the only option they have been given is a hysterectomy. And then at the opposite 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 diagnosed with fibroids should either find a fibroid specialist or a reproductive endocrinologist, which is another specialty that’s especially helpful for menstruating women who would like to conceive.
HW: As a leader in the women’s health community, what is the hardest thing about activism?
Portable: In the early part of my career – because I don’t have a healthcare background – I was in construction management, and having the courage to switch gears and follow my heart and address that need has added a quality of life to my life that makes everything feel like it’s just flowing in the right direction.
And so I never think that activism is cruel. It’s just a joy and a privilege. And for me personally, it checks all the boxes of being curious and giving back.
I am grateful to be able to be in this role and see the change we have been able to bring about.
HW: Tell us the biggest misconception about fibroids that you would like to correct.
Portable: The biggest misconception is that it’s just a black woman’s disease. Fibroids affect every ethnicity and we don’t even have the data to show the true impact for most communities, but with the Fibroid Foundation reaching over 180 countries around the world, it’s clear that our community crosses cultures and many ethnicities.
Take our quiz: True or False: Uterine Fibroids >>
HW: In addition to being a CEO and patient advocate, you are also an inventor. Tell us about the underwear you designed specifically for women with fibroids.
Portable: It’s a line of underwear for women with heavy post-maternity flow issues and mild incontinence, so we’re looking at them to be beautiful and functional.
The product isn’t out yet, but we’re close. We are actually in the process of finding the best place to source the underwear and this is an ongoing process.
I’d like to see it roll out next year and it’s taken a while, but I feel really good about where we’re at and the team we’re working with. I’ll keep you posted on how this goes and hopefully, again, what we’ve learned will help us deliver a product that will be very useful to our community at large.
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