9 out of 10 Black Women Will Get Fibroids Before They’re 50, So Why Are Treatment Options Still So Limited?

My mom was 13 when she first learned about fibroids, benign tumors that can randomly develop inside the uterus. That was how old she was when her mother got a hysterectomy to remove her fibroids and prevent them from coming back.

I was 7 years old when my mom gave me the fibroids talk—what they were, that her mother had them, she had them, and that I likely would have them, too. She even showed me pictures of the tumors she had removed the year before I was born. Her fibroids came back, and by the time I was 14, my mother had her own hysterectomy.

Soon after, I developed the same heavy cramping and bleeding that my mom had always struggled with. She had me get an ultrasound to see if I had fibroids. Luckily, I didn't—it'd be rare to get them that young, but she wanted me to understand my risk. "I was trying to get you thinking along the lines of, 'This is something that women go through.' You have a family history of them," my mom recalls. "I wanted you not to be frightened by what was going on in your body. Because, you know, some women just have difficult reproductive systems."

Difficult reproductive systems might be an understatement here. "Fibroids may not kill women, but they significantly compromise their quality of life," says Erica Marsh, MD,  a reproductive endocrinologist and infertility specialist. Symptoms of fibroids include heavy bleeding, a distended abdomen, urinating often, painful sex, lower back pain, and reproductive complications such as infertility. Dr. Marsh says six in 10 women can expect to develop fibroids by age 50. That number goes up to nine out of every 10 for Black women.

There is no known permanent solution for fibroids other than hysterectomy, the surgical removal of the uterus. Fibroids continue to be the leading cause of hysterectomies in this country, and Black women have more hysterectomies than women of any other race. But the sad truth is that not all of those hysterectomies are necessary.

Hysterectomies aren't the only answer to fibroids

One of the biggest problems about fibroids is that the medical community still doesn't know why they happen, and why specifically they're so common in Black women. Jessica Shepherd, MD, a Chicago-based OB/GYN, says women of African descent are more likely to develop fibroids because of genetics and ancestry as well as their higher rates of obesity, but again, it's unclear why those two specific things lead to fibroids. (Family history is also a risk factor; if your mother had fibroids, like mine does, that makes you three times more likely to develop them than someone whose mother does not have fibroids.)

The fact remains that Black women are disproportionately affected by fibroids. Research has shown that Black women are more likely than white women to develop fibroids at an earlier age, report more severe symptoms, and have a greater number of fibroids. They're also more likely to get hysterectomies. CDC data from 2012 of women between ages 48 and 50 found that 33 percent of Black women report having a hysterectomy compared to 23 percent of white women; another study looking at younger women (aged 33-45) found that 12 percent of Black women reported having a hysterectomy compared to 4 percent of white women.

However, hysterectomies aren't the only way to manage fibroid symptoms or address problematic fibroids, says Linda Bradley, MD, an OB/GYN at the Cleveland Clinic. For some people, hormonal contraception can be enough to manage fibroid symptoms. For others, the hormonal medication leuprolide acetate is used to induce a temporary menopausal state, which gives a person a break from heavy bleeding and allows the fibroids to shrink, she says. A new drug called Oriahnn (which is a combination of estrogen, progestin, and the hormone elagolix) was recently approved by the FDA to treat heavy, fibroid-related bleeding.

Medication might not quell all of these symptoms, which is where other procedures come in. Radiologists can conduct a uterine fibroid embolization (also referred to as uterine artery embolization) to block blood vessels that feed the fibroids, which keeps them from growing. Specialists can even do an MRI-guided focused ultrasound treatment that uses sound waves to destroy fibroids.

Then there's a class of surgeries call myomectomies, in which doctors to remove fibroids while keeping the uterus intact. It's the surgery my mother had in 1995, and has been around since the 1840s, says Dr. Bradley. Some types of myomectomies involve laparoscopy (where a small camera is inserted into the abdomen, then a surgeon removes the fibroids using other tools inserted into the abdomen rather than completely opening a person up), while others can be done vaginally. (A surgeon can also perform a myomectomy by cutting horizontally or vertically across the abdomen to access the uterus and remove the fibroids.) These surgeries run the gamut from being minimally-invasive to full-on open surgery, and thus have a recovery time ranging from two to four weeks for a laparoscopic myomectomy to four to six weeks for an abdominal myomectomy.

Even with these procedures, there is still the risk that fibroids can return—which is where hysterectomies come in. Hysterectomies remove the entire uterus (and sometimes the ovaries and cervix as well, depending on the surgery) and thus put a permanent end to fibroids. Like myomectomies, hysterectomies can be achieved in a variety of ways, including laproscopy, through the vagina, and via abdominal incision. They similarly come with a range of recovery times for patients from four to six weeks.

Why hysterectomies continue to be so prevalent

Despite these many options, patients—particularly Black women—continue to get hysterectomies to treat fibroids at high rates. Dr. Bradley says that there are 600,000 to 650,000 hysterectomies performed annually in the U.S., and only between 35,000 and 50,000 myomectomies. Additionally, despite the more minimally-invasive hysterectomies (like vaginal and laparoscopic surgeries) being the preferred first option recommended by the American College of Obstetricians and Gynecologists (ACOG), research shows that Black women are more likely to receive an abdominal hysterectomy, which has the longest recovery time and the most side effects (including urinary tract infections, infections, and even sepsis). Black women are also more likely to experience these side effects from surgery than white women.

Part of the reason for the higher rates of hysterectomies has to do with patient perceptions—that removal of the uterus is the only option for addressing fibroids. "I've had a lot of patients who come and say 'I don't want to have a hysterectomy,' and I'm like, you don't necessarily have to have that at all," says Dr. Shepherd. "I think there are a lot of women who don't go to the doctor because they're afraid of what comes with that conversation." 

However, Dr. Bradley says that many members of the medical community often "default" to hysterectomies despite being well aware of alternatives. "There are a lot of myths that physicians were taught, and still carry, such as, the surgery is too hard to do. It's too long. It's too difficult. It's too bloody." says Dr. Bradley. "My colleagues and I, who are big proponents of [hysterectomy alternatives], do not believe that."

That said, Dr. Bradley adds that hysterectomy alternatives can be more complicated for Black women. "The normal uterus is the size of a lemon, and some, especially Black women, have gigantic fibroids," she says. "The uterus [with fibroids] could be the size of a watermelon, a turkey, a basketball. It's challenging to deal with those cases—but if a doctor has the technique and the team and the training, I'm not saying it's as simple as cutting a slice of pie, but you have the techniques to make it safe."

Another incentive to perform unnecessary hysterectomies may be tied to the payout they provide for health-care providers. A 2016 review in the journal Surgical Endoscopy examined the reasons why hysterectomies are so prevalent in the U.S. and found that even though minimally-invasive fibroid surgeries can be technically challenging and may require more advanced skills, surgeons are paid more for hysterectomies than other kinds of fibroid-related surgical treatments. "This modified payment incentive can be a barrier to a more appropriate procedure choice for patients who are candidates for minimally invasive surgery, financially rewarding physicians who do not learn, offer, or perform this approach," the review reads.

There are many for whom a hysterectomy is an appropriate treatment, says Dr. Bradley. But, it shouldn't be the first plan of action that doctor's recommend, particularly since it comes with major side effects. Compared to non-surgical options like uterine fibroid embolization (which has a recovery time of two weeks), both myoectomies and hysterectomies require up to eight weeks of recovery time depending on the surgical procedure used. Unlike myomectomies and non-surgical options, hysterectomies can also negatively affect surrounding organs like the bladder and the bowels. Dr. Bradley adds that 20 to 30 percent of pre-menopausal women who have hysterectomies but keep their ovaries will go into early menopause. This isn't just about the frustrations of hot flashes and night sweats; premature menopause can put a person at a higher risk for developing osteoporosis, dementia, Alzheimer's, and premature cardiovascular disease.

"If you're 35 and have your uterus removed, hormonally, you could become like a middle-aged woman," says Dr. Bradley. "We have to be cautious, and have a good reason that we're recommending a patient for a hysterectomy, especially in young reproductive-age women."

Continuing research and education

Despite the prevalence of fibroids, our understanding of them continues to lag. "In the last 10 to 15 years or so, the field started making significant strides in our understanding of the pathophysiology of these tumors," says Dr. Marsh. "We still have a long way to go in that space, as well as our understanding of patient decision-making, provider counseling, and how to make sure women are getting the right care at the right time."

Dr. Shepherd says there are studies being done to better understand fibroids, but more research dollars are necessary to fund the in-depth research needed to look at genetic properties of fibroid growth and other factors. Dr. Marsh explains that she believes a combination of sexism, racism, and the fact that fibroids are non-fatal have to do with the lack of funding and research.

"If men had fibroids... we would be much farther along in our understanding of them," says Dr. Marsh. "And I think it's largely [because fibroids] disproportionately impact African American women, but really, impact all women." It's a good thing that fibroids aren't associated with any significant mortality, "but I think because of that medicine and society to a large point has just fallen back on, 'Well, just get a hysterectomy.'"

Dr. Bradley, who is also a professor of surgery at the Cleveland Clinic, says the next generation of surgeons must be given the tools and knowledge to make sure their patients are presented with all of their options. "I love my role as a teacher to teach the next generation, potentially, how to do it right, or to do it better."

As research progresses, it's crucial that women—particularly Black women, who are prone to both fibroids and also mistreatment at the hands of the medical community—need to have a better understanding of fibroid symptoms, know what is and isn't normal for their periods (which is where fibroids symptoms often manifest), and feel empowered to have a very high bar for their health expectations.

"There are a lot of women who are having abnormal uterine bleeding who think that that's normal," says Dr. Marsh. "Soaking through your clothes, staining sheets and mattresses, having to take off work during your period because you're concerned about lightheadedness and dizziness—none of those [symptoms] are normal."

If you do have fibroids, Dr. Bradley wants you to find a provider that is going to give you options beyond a hysterectomy. "Especially if women want children, the answer is never to remove the uterus if you're not sure," she says. "Keep looking until you find a doctor that can [address other treatment options] because there are many of us out there who are trained, and are training doctors to do that."

Given my family history, I'm prepared for the idea that fibroids may very likely be a part of my future. A hysterectomy may have been the right choice for my mom and grandmother, but if I one day have to make decisions about caring for my own fibroids, I hope that the scientific and medical communities will be able to present me with the best and most appropriate options for me and my body, period.

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