Caren Lissner had her finger on the ticker of her biological clock. As a single woman in her early 30s, she knew her time to find a partner and start a family was limited by her eggs, which would decline in quantity and quality around age 35. “I’d always grown up hearing, ‘Don’t wait too late to have kids,'” says the now 42-year-old novelist based in Hoboken, New Jersey.
[See: The Fertility Preservation Diet: How to Eat if You Want to Get Pregnant.]
But Lissner hadn’t heard that something other than her organs or relationship status could get in the way of her dream of becoming a mom. That is, until she was diagnosed with uterine fibroids — uterine tumors that are almost always noncancerous but can cause heavy, long periods; painful sex; and pelvic and lower back pain. In some cases, fibroids can interfere with pregnancy by taking up valuable real estate on the uterine lining where an embryo might implant, or by crowding the uterus once one does and begins to grow. In effect, fibroids are sometimes linked to recurrent miscarriages and preterm labor.
“A gynecologist … told me it was fibroids, and I had no idea what they were,” remembers Lissner, who saw the specialist after her primary care doctor and a urologist ruled out a urinary tract infection as the cause of her bladder pressure. “I had never heard of such a thing.”
Many women haven’t. While some estimates suggest up to 80 percent of women will develop fibroids at some point during their reproductive years, only about 30 percent have symptoms, says Dr. Shannon Laughlin-Tommaso, an OB-GYN at the Mayo Clinic in Rochester, Minnesota, who studies and treats the condition. But even women with symptoms commonly go undiagnosed, and some don’t discover they have fibroids until they have trouble getting pregnant. “What we see a lot is, ‘I’ve had these symptoms for years, and I didn’t realize they were due to my fibroids,'” Laughlin-Tommaso says.
But awareness of the condition is important because treatments are available and advancing — even though they’re not always necessary, experts say. Lissner, for one, wishes she had known about the possibility of fibroids earlier, even if just to cushion the blow of the diagnosis. Other women might benefit from such knowledge, she thinks, if it encourages them to put more padding in their family planning timeline or health care budget.
“It wouldn’t hurt to do a little early planning,” she says.
The Great Unknown
Fibroids are essentially former uterine muscle cells that have grown and multiplied into noncancerous tumors, according to the American Society for Reproductive Medicine. While most settle in or on some part of the uterus, they’re occasionally found in the cervix. Where, how many and how big they are influence whether women or their doctors notice them. “If the uterus is large, you can just feel [a fibroid] by an abdominal exam,” explains Dr. Erin Carey, assistant professor in the Department of Obstetrics and Gynecology at the University of North Carolina–Chapel Hill. Clinicians also often diagnose women using a pelvic ultrasound or other imaging tests.
In about 2 out of every 1,000 cases, a cancer called leiomyosarcoma is found in women with fibroids, Carey says, but there’s no good diagnostic test to identify it. Women who are African-American, have undergone pelvic radiation treatments or have a history of retinal blastoma may be at increased risk, though it’s unclear why, Carey says. But most women shouldn’t worry about cancer when they find out they have fibroids, Laughlin-Tommaso says. “It’s scary for women to hear that there’s a cancer that looks like fibroids or maybe arises from some type of fibroids, but we want them to be aware of the fact that [the] vast majority of fibroids are benign,” she says.
[See: 16 Screening Tests All Women Need.]
Doctors and researchers don’t know exactly why fibroids pop up, but they do know there are both hormonal and genetic links, says Carey, who directs UNC’s Division of Minimally Invasive Gynecologic Surgery. “Often, if you tell a patient they have fibroids, it’s not uncommon that they say, ‘Oh, my mom has fibroids, my sister has fibroids,” she says. African-American women, too, are far more likely to develop the tumors, to develop them at an earlier age and to experience more severe symptoms, research finds.
Definitive steps to prevent fibroids are unclear, though some studies suggest that eating a healthy, plant-based diet and exercising might help, Laughlin-Tommaso says. “Most of them come down to living a pretty healthy life,” she says. After her diagnosis, Lissner took such advice to heart. In an effort to prevent the fibroids from growing and affecting a future pregnancy, she ate mostly fruit, vegetables, fish and the occassional chicken, but no meat, saturated fat or sugar. She lost enough weight for a crossing guard to take note. But Lissner was driven by one concern: “I was scared about not being able to have children.”
One Size Doesn’t Fit All
Women diagnosed with uterine fibroids used to have one prevailing solution: a hysterectomy, which entails the complete removal of the uterus. At some places, the surgery may still be the default option, depending on the provider’s expertise and awareness of newer treatments, Carey says. While a hysterectomy can be the best choice for some women — namely, those who are done having children or don’t want to preserve their fertility — and is the only option that guarantees fibroids won’t return, it’s not the only one.
“There’s quite a few [treatment options], and not all are right for all patients,” says Carey, who recommends women seek second opinions and find a clinician with expertise treating and operating on fibroids. “It really takes counseling and finding out what the patient’s goals are before you can offer a patient treatment plan.”
For instance, women who don’t have bothersome symptoms may not want treatment. If symptoms develop in the future or interfere with their ability to conceive, they can reevaluate, experts say. “Some of our job is reassurance — ‘Yes, you have fibroids, but you don’t really need treatment now,” Laughlin-Tommaso says. Women who are nearing menopause, too, often choose to do nothing since fibroids tend to shrink after that phase.
For women whose biggest complaint is menstruation-related, hormonal forms of birth control like the pill or a hormonal IUD can help control bleeding. In one small study, Carey says, 60 percent of women who planned to undergo a hysterectomy to treat fibroid-related bleeding cancelled their surgeries after being put on a hormonal IUD, which they found effective enough. Nonsteroidal anti-inflammatory drugs can also ease pain, and some drugs that essentially induce menopause can shrink the fibroids, at least temporarily, Carey adds.
Then, there are procedures such as uterine artery embolization and MRI-guided ablation, which aim to destroy the fibroids without removing them or affecting the surrounding tissue. These options are low-risk and can help relieve symptoms, but about 30 percent of the time women who undergo them have an additional procedure five years later, Carey says, noting they’re also not options for women who want to preserve their fertility.
The “gold standard” treatment for women who still want to have children, Carey says, is a laparoscopic myomectomy, in which the fibroids are removed through small incisions in the belly using minimally invasive methods. While some clinics have stopped performing laparoscopic myomectomies due to recent reports that they can spread the cancerous cells found in some fibroids, such instances are extremely rare and certain minimally invasive tools can prevent that possibility, Carey says.
Lissner eventually opted for a traditional myomectomy, or the surgical removal of the fibroids through a large abdominal incision, after her symptoms — namely, bladder pressure that caused frequent urination — became too much. By then, her fibroids had become one fibroid “the size of a football,” her doctor told her. Still, the procedure was successful, and Lissner went on to have two children, now toddlers. Still, she says, “I hope medical science comes up with more ways to treat fibroids.”
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Experts do too. Some drugs like ulipristal that aren’t yet approved to treat fibroid symptoms in the U.S. but have shown promise in Canada and Europe, for instance, could be on the horizon, Carey says. Other uterine-sparing ablation procedures are being studied too, she says. Meantime, nine medical centers across the U.S. are looking into what available treatments work best by recruiting women undergoing a range of them to join a registry that launched just this month. So far, many women have signed up to participate, says Laughlin-Tommaso, who’s involved with the project. “Patients really want to find these answers,” she says, “and they also want to help other women.”
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The 411 on Fibroids originally appeared on usnews.com
