The only thing more startling about rising uterine fibroid (UF) diagnosis rates—1 in 3 women will experience UF in their lifetime—may be the global silence about this women’s health crisis. When, at 26, a newly-diagnosed Sateria Venable was told by her doctor that her only treatment option for fibroids was a hysterectomy, she began a journey that led to the founding of The Fibroid Foundation (TFF).
Today, TFF is the premiere global organization helping UF patients find community, treatment and, hopefully, a cure. The patient-lead non-profit is the voice of UF patients around the world—and to mark Fibroids Awareness Month in July, it launched a campaign to erase stigma around reproductive health, raise money for a cure and give a familiar face to the cause.
Venable talked to Ms. about founding TFF, what everyone needs to know about fibroids and what’s next in her trailblazing fight for women’s health.
Who are you—and what are some of the reasons you founded The Fibroid Foundation?
I am Sateria Venable, founder of The Fibroid Foundation, a patient-founded advocacy organization focused on supporting the global community of women with uterine fibroids.
I was diagnosed at 26 and the treatment option that was given to me was a hysterectomy—which I thought was incredibly odd, given my age and the fact that I had not had children. It was incredibly difficult to find skilled and knowledgeable and caring physicians, which is key. I started advocating about 10-and-a-half years ago, after two surgeries and symptoms that continued to plague my quality of life.
I founded TFF when I realized how many women had similar stories and how large this issue was. No other foundation existed that I was aware of at the time, so I saw a need and I moved forward into that space. The foundation began as just conversations between women in Chicago—then it evolved into a blog, and then the official Fibroid Foundation became a registered 501(c)3 in 2013. This year we’re celebrating five years of patient advocacy!
Do you consider UF a feminist issue?
Fibroids are a health concern of women, so they definitely are a feminist issue. More importantly, the fact that fibroids research and treatment has gone unaddressed for so long makes it an urgent feminist issue.
When a woman is suffering and has to then consider the financial impact of finding comfort in addressing what can sometimes be a very challenging health issue—it is just horrible to have to consider financial concerns when you’re sick. We promote self-care. Oftentimes, our symptoms are prolonged because we are taking care of everyone except ourselves, so it’s important to put ourselves on our own calendars.
What are some things about UF that you wish more people knew?
How prevalent it is! I don’t think people are aware, They hear the word “fibroid” and they think “that’s a rare occurrence,” but it really is not. It plagues many, many women, and probably many that you know. I feel that it’s something that we don’t discuss, and we are striving to change that dynamic.
We know that one in three women will be diagnosed with fibroids to some degree in their lifetime. Women of African descent are diagnosed to a higher degree; as many as 80 percent of women of African descent have UF.
UF healthcare costs in the United States is upwards of $30 billion dollars annually. It varies year to year, but it’s always an enormous number that is indicative of the reach of the health concern.
Most recently, research has shown that less than 20 percent of hysterectomies are necessary—yet hysterectomy is still too readily recommended as a treatment for uterine fibroids, despite the fact that there are other many other treatment options available. The concern is that women are not made aware by their healthcare providers, that there are other treatment options available. They are undergoing unnecessary hysterectomies, which can lead to a host of other issues, including prolapse and urinary incontinence.
What do UF patients face? Can you talk about your #EraseTheStigma campaign and what you were hoping to address?
For many, many years, there has been a stigma—and still is—associated with menstrual issues. It’s something in many families that’s not discussed, and that you secretly manage.
That stigma is harmful to the forward movement of treatment and care of women with UF. When you’re not discussing it, and you’re trying to manage it by yourself, oftentimes the fibroids continue to grow—and symptoms can worsen with any delays in seeking treatment. So we are embracing the beauty of reproductive health.
Our goal is to #EraseTheStigma around reproductive health and menstrual health—make it a topic that people see the value in, because none of us would be here without menstruation. They are afraid to discuss what is a natural, beautiful need of the human body all over the world.
There is often a stress related to managing UF and undergoing a surgery and/or bleeding. There is embarrassment—from, perhaps, having an accident in public. There’s the stress of month-to-month-to-month, which can sometimes be year-to-year-to-year—avoiding events because you’ll be on your period and you’re in too much pain or too uncomfortable or can’t reach the bathroom.
It causes a lot of stress. Oftentimes, it’s just really helpful to know that someone else shares your story.
I recently met a woman at one of our community events who had surgery for her fibroids. Prior to the surgery, she was left on a gurney in a hospital hallway bleeding, hemorrhaging. The pain that she felt was palpable. It fuels our work as an organization to be the voice for patients like this woman who sought treatment and didn’t receive the best treatment and is still emotionally bruised from the experience.
How can people with fibroids UF competent and caring treatment?
On our website, we have a guide of questions for you to ask your physician. The key things to remember when selecting a physician are that your relationship with your physician should be a collaboration.
I think historically, people go to the doctor, they listen to what the doctor tells them, and then they do what the doctor says. That time has passed. It’s best if your physician really understands your goals—because every person’s goals are not the same—and is able to develop a treatment plan based on those goals.
We have a forum on our website for women to share their story and a group on Facebook for those living with UF. Recently, we launched the FACE of FIBROIDS campaign where women can share their story and upload a photo.
What are some of the challenges TFF is facing?
The current political climate is incredibly disheartening in terms of health care coverage. Women already are encumbered with additional monthly expenses for sanitary products—and in other parts of the world, don’t have access, adequate access, to the sanitary products at all.
I feel that when you reach out to a lot of corporations, finding a sensitive ear can still be a challenge. I’ve been told by an executive very high up in a global corporation that he did not see the value in our mission and in our work. I hope that our work encourages people to be more open to understanding the mission of an organization, even if it is not a mission that personally relates to them. I think folks also thought that creating an organization specifically focused on this health concern was a reach. However, that has begun to dissipate, thank goodness.
What can supporters do?
You can join the FACE of FIBROIDS campaign and share your story and encourage more women to also share theirs. You can donate on our website or Facebook page. We are always in need of volunteers. Women can become an ambassador in their community as a point of contact for educational events.
It’s important that we show the enormity of this movement, given the fact that millions of women have uterine fibroids. If there were a million women joining our #FACEofFIBROIDS campaign, research funding would come from every conceivable direction—and that is what we need to find the cure.
What does the face of fibroids look like?
The face of fibroids is vast. It not only is the individuals who are affected by UF, but it is also those people who are impacted by a loved one having a severe health diagnosis. UF data is most substantial in the United States, but it is a global health concern.
What do you wish you could say something to a new patient who has recently been diagnosed with UF like you were as a young woman—something that you didn’t hear?
Information is power. Hopefully, a woman who is newly diagnosed is able to reach out to our website to get information to inform her of the definition of fibroids. We walk through treatment options on the website.
I would let her know that she is part of a community that cares about her. I think that’s important as well—oftentimes, people think that they’re alone in this diagnosis, and they are not, because we are here for them. Our community is here for them.