What motivated you to launch the Fibroid Fighters Foundation?
The issue of uterine fibroids is bigger than our organization, USA Fibroids Centers. The condition is a health problem, a social problem and a community problem, so I thought that the most appropriate way to share our knowledge and gain traction is by bringing people together from different backgrounds to help us educate everyone and bring awareness about the fibroid epidemic. That’s why I created Fibroid Fighters Foundation.
When we started offering uterine fibroid embolization (UFE) in our clinics, I was shocked to learn that millions of women with fibroids go to hospitals and urgent care and half a million get unnecessary hysterectomies; this is not the treatment that they deserve. Uterine fibroid embolization can be done in the office, but there’s a lack of awareness about the procedure that led me to the decision that we have to work on this.
What is uterine fibroid embolization?
Uterine fibroid embolization is a minimally invasive procedure that’s been around for more than 80 years. A catheter is inserted through an incision—about the size of a pencil tip—into an artery at the groin or wrist that leads to the blood vessel artery that feeds the fibroid. A special drug is pushed through this catheter, and this drug stops circulation in the fibroids. The fibroids don’t get a blood supply anymore; they shrink and get absorbed by the body. That’s the essence of the treatment, and it can be done in the office. It requires light sedation and sometimes can be done with local anesthesia, and it takes between 20 to 40 minutes. Patients usually go home a couple of hours after the procedure. After treatment, they might experience cramps, like a strong menstrual period, for a few days, and that’s about it.
What surprises have you encountered while organizing Fibroid Fighters?
Probably the biggest surprise is that people are not used to speaking about this health problem. What we have to do is break the silence about this particular topic of a painful, prolonged menstrual period. Many times, women with fibroids don’t have a normal sex life—or any sex life. Then there’s the mental strain. Women are afraid to go anywhere. The first thing they do when they get somewhere is try to locate a bathroom so they can feel more comfortable. Fibroids are also the number one reason for miscarriages or spontaneous abortions. The condition is a terrible distraction in family life that people aren’t used to speaking about, partly because many people don’t know there’s a better solution to the problem than hysterectomy.
But there is a way women can get rid of fibroids and enable themselves to have an amazingly happy and productive life. This is a way for them not to waste the best years of their lives—between the 20s and 50s—when the fibroids are extremely symptomatic. I think the message that there’s a cure and there’s a solution helps people to open up and talk about this very common problem.
Unfortunately, in the African-American population, fibroids start earlier, grow faster and seem to be more painful and more symptomatic.
The big thing that’s related to fibroids is the fact of unnecessary hysterectomy and complications after hysterectomy. For example, 90% of patients develop opioid dependency after hysterectomy; many people experience incontinence; and these women cannot have kids. We get calls from crying women on a weekly basis. We have gotten a call from a patient with fibroids who is 26 years old who says, “I went to a gynecologist, and the gynecologist recommended hysterectomy,” and she doesn’t have kids and wasn’t even married. That’s a terrible thing, especially if you have a very simple, office-based treatment that’s covered by insurance.
What is the best way for the medical community to address women with uterine fibroids being initially misdiagnosed by doctors?
I think three things would help. First, doctors need to understand the prevalence of the disease. If they understand that the disease is so common, then they will be looking to diagnose this disease. If they would know that, according to statistics, there’s a 60% chance that African-American women have fibroids, then they would ask about the symptoms and ask a very simple question: Does this woman have fibroids or not?
The second thing is doctors should be aware of fibroid symptoms and not normalize the abnormal. It’s a fact of life that women have menstrual periods. But it’s not normal to have a menstrual period that’s associated with heavy bleeding or that lasts two weeks. This means if a doctor asks, “Has your menstrual period been unusual?” and women answer, “No, everything is as usual,” that’s not good enough. But if doctors would ask, like they’re supposed to, “How long does your period last and how painful is it? How many pads do you change a day?” or similar questions, then it would be very clear to the doctor that her period is abnormal.
The doctor might notice that the woman is looking a little pale. That’s when a doctor should say, let me check your blood work and see if you have anemia. And if the young woman or middle-aged woman has anemia, it could be that she’s losing blood because of the fibroids. Also, if a woman complains about frequent urination and says, “Oh, I have a small bladder,” there’s no such thing! It could be fibroids pressing on the bladder. In addition, when it comes to complaints about constipation, again, that can be a fibroid tumor that’s compressing the colon. If a woman complains about pain during sex, most likely it’s a fibroid problem.
The third thing doctors should do is ask women to undergo either a transabdominal (over the abdomen) or transvaginal (inside the vagina) ultrasound examination. In the vast majority of cases, you will be able to see fibroid tumors with an ultrasound. When you don’t see them, an MRI is another modality that can be used. This test shows not only fibroids but also any thickening in the lining of the uterus before it forms a tumor.
How can organizations like Fibroid Fighters help people to become aware of uterine fibroids as a health issue?
During health education classes, just like students learn about sex or diabetes or that smoking is bad, they need to learn about fibroids! Actually, my daughters—I have twin daughters who are in college now—when they were in high school, they went to different schools to speak about this, and hundreds of girls and boys were actually happy to learn about this condition. Many were quick to recognize that oh, my mom has it, or my sister, or I have a very painful menstrual period I need to check. This is why if we bring awareness to young people, especially in high schools and colleges, and explain that there is a way to diagnose this problem with ultrasound, then people would realize that they could be spared painful menstrual periods. There would be less absenteeism from work and employees losing money and opportunities in their professional and personal lives. There is always a solution for fibroids so people can call and get help.
However, there is one problem with uterine fibroids that the medical community needs to solve. Typically, ob-gyns don’t perform certain fibroid treatments, including uterine fibroid embolization. It’s interesting that women go to gynecologists to ask for advice about bad menstrual periods, and the gynecologists don’t perform UFE, which is done by an interventional radiologist. This is why the choice of treatment highly depends on the doctor that you go to first and ask for advice and also why I created USA Fibroid Centers, so we could bring the specialty directly to the patient.
What strategies are you using to expand Fibroid Fighters?
We definitely base our growth on ambassadors first, and we’re working to have multiple local chapters and events in such cities as New York, DC, Atlanta and Chicago. Right now, everything is virtual so we’re focusing more on bringing ambassadors to our organization. The more ambassadors we have, the more patients will know about the organization and the more they will tell everyone they know and the more successful the fight against fibroids will become.
How involved is Fibroid Fighters in lobbying for changes in public policy to support uterine fibroids awareness and research?
We are one of a few organizations that from the very beginning supported the uterine fibroids bill Kamala Harris introduced in 2020 as a senator. I think the goals of this legislation are very clear. I hope they will be able to add education about fibroids as a part of the health curriculum education in schools. This includes educating physicians and the general population—men and women—about fibroids. Physicians must learn and understand that the epidemic of fibroid disease, which is common and treatable, prevents women from achieving their full potential. Health insurance companies should be educated to have patients evaluated before supporting a hysterectomy procedure when the patient is a candidate for uterine fibroid embolization, especially since the treatment preserves the uterus. That would be the right thing to do.
Currently, we’re doing studies that show uterine fibroid embolization—in the hands of doctors who specialize in this procedure—can be done safely and effectively in offices. The use of this treatment to heal one woman and one community at a time is a great goal and focus of ours.
Hopefully, Fibroid Fighters will help us to spread the word and work with the legislation and other work being done to help women achieve health, happiness and pursue the opportunities that they deserve in life.
Editor’s note: Fibroid Awareness Month is July and USA Fibroid Centers will offer free fibroid screenings to women at any of their outpatient clinics located in New York, Pennsylvania, Florida, Georgia or Texas.
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