What doctors wish patients knew about uterine fibroids

Uterine fibroids cast a long shadow over the lives of countless women, emerging as a common yet overlooked gynecological health issue today with more than 200,000 cases per year in the U.S. These benign tumors in the uterus are not usually cancerous, but very little is known about how and why uterine fibroids develop and grow. This can be frustrating because there is no way to prevent uterine fibroids. But knowing what symptoms to watch out for and when to visit your physician can make a difference.

The AMA’s What Doctors Wish Patients Knew™ series gives physicians a platform to share what they want patients to understand about today’s health care headlines.

In this installment, Veronica Gillispie-Bell, MD, MAS, an ob-gyn and head of women’s services at Ochsner Medical Center-Kenner, discusses what patients need to know about uterine fibroids. She is also medical director of the Minimally Invasive Center for the Treatment of Uterine Fibroids.

Ochsner Health is a member of the AMA Health System Program, which provides enterprise solutions to equip leadership, physicians and care teams with resources to help drive the future of medicine.

“Uterine fibroids are tumors of the uterus. The majority of them are benign,” said Dr. Gillispie-Bell, noting “they are basically an abnormal growth. It's one cell that has grown quite a bit to develop the tumor.”

And while uterine fibroids “are usually benign, there is a cancerous type called Leiomyosarcoma, but that type is pretty rare,” she explained.

With uterine fibroids, “the symptoms can vary, but the most common symptoms are heavy menstrual bleeding or pelvic pressure, pelvic pain,” said Dr. Gillispie-Bell. “Bulk symptoms can occur because of how big the fibroids can get. And when they start to press on other organs, they can cause pressure and fullness.”

“Many women are asymptomatic with their fibroids,” she said,

But it is important to note that “having fibroids doesn’t always mean you have to do something about them. It’s only if you’re having symptoms,” Dr. Gillispie-Bell said, noting uterine fibroids “are the most common reason for hysterectomy.”

“If you have fibroids and are experiencing heavy bleeding, if you're experiencing irregular cycles, painful cycles, if you are experiencing pelvic pressure, fullness, pain with intercourse, frequent urination—any of those symptoms—then they're a problem,” she said.

“I've had patients in their teens—as early as 14 or 15—with uterine fibroids, although that's not very common,” said Dr. Gillispie-Bell, adding that “usually, symptoms don't appear until reproductive years.”

“On average for Black women, they present with symptoms five years younger than their white counterparts,” she said. “And our symptoms tend to be more severe.”

While there are not different types of uterine fibroids, there are “different locations,” Dr. Gillispie-Bell said. First, “we have submucosal. Those are the fibroids that are found in the lining of the uterus.”

Then there is “intramural, which are found in the muscle wall of the uterus,” she said. There is also “subserosal, which are found on more of the outside—I like to say the skin of the uterus.

“And then pedunculated, which I always describe to patients as those are like lollipops. So, they're hanging off like a lollipop on a lollipop stick,” Dr. Gillispie-Bell explained.

When it comes to what causes uterine fibroids, “that’s the magic question that everybody asks. We don’t know what causes fibroids,” Dr. Gillispie-Bell said. “We do know that they have estrogen and progesterone receptors and some of the medication treatments and therapy treatments target the fact that they do have estrogen and progesterone receptors.

“We know exposure to estrogen and progesterone to some degree is what makes them grow, but we don’t know why one woman has fibroids and another woman doesn’t have fibroids,” she added. “When I perform surgery to remove fibroids, one woman may have two fibroids, another woman may have 52 fibroids. And so, we don't know why there's so much variability.”

"We do see a difference by race and ethnicity. We also see a difference in symptoms by race and ethnicity. But any woman with a uterus can have fibroids,” Dr. Gillispie-Bell said.

“For example, I’m a Black woman. Well, 80% of Black women are going to have them,” she said. “So, then, the chances are really high that my mom has had them, and sisters will have them and it’s not necessarily a hereditary factor.”

“Heavy periods can lead to anemia, even if you're taking iron to address anemia. It doesn't matter if you replace it, the next month you're going to have a period and dump the blood back out,” Dr. Gillispie-Bell said. “So, anemia is the most common complication that we see. Then from anemia—depending on how severe that anemia is—you can have effects from that too.”

“If the fibroids get very big, they can start to press on other organs,” she said. “So, we can see constipation. We can see something called hydronephrosis where if the fibroid is growing out to the side, it can press on the ureter, which is a tube that goes between the kidney and the bladder, and that can make the kidney swell.

“Depending on the location, fibroids can increase the risk of miscarriage,” Dr. Gillispie-Bell added. “For those individuals who have fibroids during pregnancy, they have an increased risk for second trimester pregnancy loss, preterm labor and growth restriction.”

Dr. Gillispie-Bell recalled seeing a patient “who looked like she was six months pregnant because of her fibroids. So, that would be the ‘fibroid belly, patients commonly speak of,’” she said, noting “there is some weight that can go along with” uterine fibroids.

“Fibroids, as I describe them to patients, have the consistency of a raw potato. They’re hard and so there is some weight that can go along with that,” she added. “That’s not to say if you are gaining weight that fibroids are the only reason. But yes, fibroids can be heavy and can cause you to gain weight.”

“If uterine fibroids are big, doctors can sometimes feel them on exam,” Dr. Gillispie-Bell said. “If we can’t feel them but patients have symptoms that are common for women who have fibroids, and we will get suspicious that patients have fibroids.

“That will lead to imaging and usually it is an ultrasound,” she added.

“The treatment option depends on the patient, what symptoms they’re having, what their desires are for symptom relief, future fertility, uterine conservation,” said Dr. Gillispie-Bell. “All of those things are taken into consideration to decide and to determine what is the best treatment for that patient.”

For example, “for patients who are looking to have lighter cycles, oral contraceptives may be an option but about 70% of women with fibroids who take oral contraceptives will still have heavy bleeding,” she said.

“But that’s one option to make cycles a bit lighter,” Dr. Gillispie-Bell added.

There are two medications approved by the Food and Drug Administration (FDA) “that you can take by mouth that are specifically for heavy menstrual bleeding associated with fibroids,” Dr. Gillispie-Bell said. “Both of these medications lower your estrogen and progesterone production.

“That’s what’s feeding the fibroids and making them grow,” she added, noting “each of those medications are now FDA-approved for up to two years of use and they are both very effective for reducing heavy bleeding.”

“There's another medication that is an injection. We call it a GnRH agonist,” Dr. Gillispie-Bell said, noting that GnRH stands for gonadotropin-releasing hormone. “It really is not meant to be a treatment for fibroids. It's meant to be a presurgical treatment to help reduce the size of the fibroids to make a surgery less complicated.”

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“Depending on if you are looking to preserve your fertility or not preserve your fertility, then we have different surgical options,” said Dr. Gillispie-Bell. “If you're looking to preserve your fertility, the best surgical option is a myomectomy and that's a surgery where we go in and remove the fibroids.

“There are different ways that we remove them and that just depends on the number and the size of the fibroids as to which option patients will be a candidate for,” she added, noting if you are removing your fibroids, there’s a big chance that they’re going to come back.”

“For patients undergoing a myomectomy, I recommend that be done six months to a year before they’re ready to conceive because of the risk of the fibroids coming back,” Dr. Gillispie-Bell said. “But sometimes—depending on how bad symptoms are—we can’t delay surgery to time it around fertility.”

“If you’re not looking to preserve your fertility, we have a procedure called a uterine fibroid embolization or a uterine artery embolization. It’s actually done by an interventional radiologist, not by the gynecologist,” she said. “They go through the artery in the arm to get to the blood vessels that feed the uterus, block the blood vessels and it helps the fibroids to shrink.” This allows women to keep their uterus.

After that procedure, fibroid-related “symptoms are usually better within the first three months. Maximum benefits at six months. But we don’t recommend this procedure for women who are interested in childbearing. The beads that are used to block the blood vessels going to the uterus can move and affect the blood vessels going to the ovary and it makes it harder for women to ovulate,” Dr. Gillispie-Bell said. “So, we don't recommend that for women who are interested in childbearing.”

“We also have radiofrequency ablation and that's a procedure—either laparoscopically or vaginally—where we can place a needle into the fibroids, burn them and they shrink over time. About a 77% reduction in the size over a year's time,” she said, noting that procedure is “probably safe for pregnancy if you're wanting to still conceive, but we don't have any randomized control trials to say that it is safe.”

“And for women who have completed childbearing and are not interested in keeping their uterus, a hysterectomy is an option,” Dr. Gillispie-Bell said. “Some women don’t choose this option because they are afraid it will put them in menopause. It’s important for patients to understand, it is the removal of the ovaries that causes menopause. Depending on a patient’s situation, the ovaries should not be removed.”

“If you have fibroids and you have no symptoms, nothing happens. When you get into menopause and estrogen levels start to decline, they will stabilize in size or maybe get a little bit smaller,” Dr. Gillispie-Bell said, adding uterine fibroids “may become calcified, which they just become harder over time.”

But “they’ll never go away, even in menopause,” she said. “Again, they grow because of estrogen and when we get into menopause our estrogen levels start to decline, the fibroids will stay about the same size, maybe get a little bit smaller, but they won't go away.”

There may not be a way to prevent uterine fibroids from developing, “but there is data that shows for Black women, we have lower vitamin D levels,” Dr. Gillispie-Bell said. “And they have shown that when you replace vitamin D with vitamin D3, it decreases the rate of the fibroids returning if you have them removed.”

“This is definitely something I talk to all my patients about, but specifically my Black patients since that’s where the data shows a benefit,” she said, noting “it is something patients should talk to their doctor about.

“And, quite honestly, for women of reproductive age—30 years old and older—we should be taking vitamin D3 and calcium anyway to protect our bones,” Dr. Gillispie-Bell added. “It should be something that's already a part of vitamin supplementation anyway. But then there's that added benefit of decreasing the rate of fibroids returning.”

“However, if they are located in the lining of the uterus, they can increase the risk of miscarriage to the point that you could conceive and miscarry without even knowing that you’re pregnant,” Dr. Gillispie-Bell said. “If you think about when you have an embryo, the embryo has to attach to the uterine lining to be able to implant.

“And if there's a fibroid sitting there, then that will not take place or that could be compromised. So, there is that risk,” she added. “Other than that, they don't cause infertility.”

There is concern about misdiagnosis, given that some symptoms of uterine fibroids also appear in women with advanced uterine or cervical cancer.  

Dr. Gillispie-Bell said patients should not be afraid to speak up, especially if they don’t feel comfortable. That is where a second opinion may be encouraged.

“A lot of patients come and see me because they've gone to a doctor, they've been told they have fibroids and a hysterectomy is their only option,” she said. “And these are women who have not had children that want to maintain their fertility, or they are women who just don't want to have a hysterectomy. They want to keep their uterus.”

“I have given you at least eight options for treating fibroid, so if you are seeing a provider who is not giving you those options and not taking into consideration your goals for treatment, your goals for fertility, your goals for what happens to your uterus, then that's when it's time to seek a second opinion,” Dr. Gillispie-Bell said.