If you’re a person with a uterus who has never heard of uterine fibroids, you might want to pay close attention. Up to 80% of women develop these growths in their uterine walls by the time they reach age 50. Fibroids are the most common-noncancerous growth in the pelvic area, caused by some combination of hormones and genes that doctors still don’t completely understand.
For some women, fibroid symptoms are mild enough that they don’t even realize they have them. For others, fibroids lead to heavier, more painful periods and a feeling of discomfort or pressure in the lower abdomen. They can sometimes cause painful sex and frequent urination, complications in pregnancy and labor (including an increased likelihood of cesarean section), and in rare cases, infertility. But maybe the most puzzling and devastating burden of fibroids is their disproportionate impact on women of color.
What Are Fibroids?
Despite being so common, fibroids are a somewhat mysterious medical complication. These muscular tumors develop inside the walls of the uterus, and they can be as small as an apple seed or as big as a grapefruit. A woman might have one single fibroid or many at once. They’re thought to be caused by some combination of genetic changes and hormones–specifically estrogen and progesterone, which are both involved in the growth of the uterine lining.
Symptoms of fibroids are varied and often mild enough that a woman doesn’t ever get diagnosed. But for those with a more burdensome case, fibroids can cause heavy bleeding (periods that last longer than a week), constipation, soreness and discomfort in the lower back and abdominal area, or a frequent need to urinate but difficulty emptying the bladder.
Fibroids & Quality of Life
Fibroids can really mess with a woman’s ability to live a normal life. Charlotte Owens, M.D., adjunct clinical assistant professor of obstetrics and gynecology at Morehouse School of Medicine in Atlanta, notes that heavy menstrual bleeding can sometimes get so bad it makes women hesitate to go to work, for fear of bleeding through their clothes in public. “Many women feel that because they have to go through this on a regular basis – every month – that they’re not in control of their life,” she says. “It can cause them not to reach their full potential.”
Because fibroids are so common and often go undiagnosed, they can be normalized among women who believe they just have heavier periods than most. “Many women can call a friend and know someone else who is affected by this,” Dr. Owens says. “Sometimes that can lead to ladies normalizing these symptoms because it’s so common.” Without medical intervention, fibroid symptoms often progress and continue to get worse. They often shrink after menopause (since fibroids are linked to estrogen production), though this is not always the case. Symptoms like abdominal pain and pressure may persist into a woman’s elderly years.
Experts have known for decades that Black women are at higher risk for fibroids than white women. A 2003 study in the American Journal of Obstetrics & Gynecology found that 80% of Black women develop uterine fibroids by age 50, compared to 70% of white women–but more striking, the study noted that Black women develop these tumors at an earlier age. A 2013 study in the Journal of Women’s Health found that Black women were more likely to report severe symptoms of fibroids that interfered with their work, their relationships, and their physical activity.
“Black women are disproportionally affected in requiring treatment,” says Veronica Gillispie-Bell, M.D., medical director of the Minimally Invasive Center for the Treatment of Uterine Fibroids at Ochsner Medical Center in New Orleans. Historically, the most common treatment option offered by doctors has often been a hysterectomy, a surgical procedure to remove a woman’s uterus. While effective in removing fibroids, this ruins a woman’s chance of getting pregnant, making it an option many aren’t comfortable pursuing. “For women, when they think the only option is a hysterectomy … [often they’re] just going to deal with symptoms because they don’t want to do that,” Dr. Gillispie-Bell says.
Hysterectomies, again, are most likely to be performed on Black women–in large part due to the more severe symptoms these women endure. “African American women have a higher rate of hysterectomy than non-African American women, and that’s regardless of age,” Dr. Owens says. “We know that hysterectomy may result in reversal of symptoms, but it’s an irreversible procedure, and it requires a significant surgical procedure to have a hysterectomy.”
People of color are also more likely to experience implicit bias by healthcare providers, according to a 2015 research review in the American Journal of Public Health. Dr. Gillispie-Bell explains that this may make them more hesitant to seek treatment – especially if they feel like surgery is the only option their doctor will suggest.
“You cannot improve disparities unless you start to deal with equity, and you can’t talk about equity unless you’re talking about implicit bias and structural racism,” Dr. Gillispie-Bell says. “Those are two barriers that are at the root of all health disparities in one way, shape, form or fashion.” Access to care is another major burden faced disproportionally by women of color.
Dr. Gillispie-Bell notes that three major barriers persist for women seeking fibroid treatment: insurance coverage, access to knowledgeable providers, and access to providers that a woman can trust. “The data shows it takes a woman about three years to find a doctor that she’s comfortable with, who will acknowledge that she has a bleeding problem, diagnose it as fibroids, and then [suggest] treatment.”
Plenty of treatment options for fibroids exist, and they can be tailored to a woman’s specific symptoms and severity. “The treatment should be guided based on your primary symptoms,” Dr. Owens says. “Being able to have the ability to know if your symptoms are normal or not is the important first step.” You should feel confident to communicate your challenges to your healthcare provider and to ask the question: What is heavy bleeding, and how much is too much?
Here's a quick guide, based on information about heavy menstrual bleeding from the CDC: If your menstrual bleeding lasts more than seven days, if you have to change your pad or tampon after two hours or less, or if you notice blood clots the size of a quarter or larger, you should talk with a doctor. Not only is heavy bleeding inconvenient and anxiety-producing, but it can also lead to anemia, which can have serious impacts on your energy levels and eventually on your overall health.
Once you’ve figured out you need treatment, it’s time to educate yourself. Here are the available options you should know (note that these options may differ based on your specific health situation):
Birth control. If you’re dealing with heavy bleeding, your doctor may prescribe the birth control pill or a hormonal IUD to help make your periods more manageable. “They will decrease the bleeding,” Dr. Gillispie-Bell says, “but it’s still putting a band-aid over the garden hose because they’re not treating the actual fibroids.” Still, if your symptoms are mild, this can be a low-risk and effective option to improve your quality of life.
Medication. There are a variety of other prescription medication options to treat the symptoms of fibroids without removing the tumors themselves. One is Lysteda (tranexamic acid, a non-hormonal medication which reduces blood loss during your period. Another choice is Oriahnn, (oelagolix/estradiol/norethindrone acetate and elagolix), a new oral medical treatment specifically designed to help with heavy bleeding due to fibroids. Dr. Owens and Dr. Gillispie-Bell were part of the clinical trials for this new treatment, which received FDA approval in May. There’s also Leuprolide, a hormonal injection that women can get every two months for up to a year. Dr. Gillispie-Bell notes that this is typically a pre-surgery option to shrink fibroids and is not meant for long-term use.
Uterine fibroid embolization. This procedure involves having a radiologist insert a catheter into your pelvic area and block specific blood vessels that flow to the uterus and contribute to fibroid growth. “It’s really not recommended for women still wanting to have children, because there is a possibility that the beads they use to block those vessels can go into the ovaries, and that makes it harder to ovulate,” Dr. Gillispie-Bell explains. It’s an option for women who don’t want surgery but are done having children.
Myomectomy. This is a type of surgery done to remove fibroids without removing the uterus, making it possible for a woman to get pregnant after she recovers. “It’s a great option to take care of the fibroids they have, but we don’t know what causes fibroids, so that doesn’t mean they won’t have fibroids in the future,” Dr. Gillispie-Bell notes. Still, it does significantly reduce symptoms in the immediate aftermath.
Hysterectomy. Finally, this is the most foolproof but also the most invasive procedure you can get to remove fibroids. Once your uterus is gone via a hysterectomy, you won’t get fibroids again in the future, but you are no longer able to have children.
Dr. Gillispie-Bell notes that knowledge is power when it comes to seeking care for your fibroid symptoms. Do your own research and come prepared. “If you are seeing a provider that is only offering you one or two options, then ask,” she suggests. “If you don’t feel that your provider is responding to your questions and being able to offer and explain why all these options are or are not available for you, seek out another provider.”
Finding a doctor you trust and feel comfortable with is key. “Gynecology is such an intimate relationship between patient and provider,” Dr. Gillispie-Bell says. “If you do not feel comfortable to be able to talk to your provider, then that’s not the right provider for you. Feel free to seek out care from someone else.” You should know that you do not suffer alone and that there is a better way forward. It just may take time to find the right provider and fibroid treatment fit for you.