By Sydney LoneyUpdated May 10, 2019
Paper Illustration: Nica Patricio, Photo: Erik Putz
The year she turned 32, Ruth Aza Mcdonough didn’t know why it suddenly hurt so much to have sex with her husband. Or why her period had become so irregular and, when it did arrive, why it was suddenly so heavy and painful. Unfortunately, her doctor didn’t know either.
An ultrasound revealed nothing. A trip to the ER had doctors suspecting kidney stones. After almost a year of discomfort and worry, an internal ultrasound finally revealed a fibroid the size of a grapefruit on the back of her uterus. “I didn’t even know what a fibroid was,” she says.
The elementary school teacher from Grimsby, Ont., went straight to the Internet. She was terrified the fibroid might prevent her from getting pregnant. Dr. Google confirmed what her doctor had already told her: Depending on the size and location of the fibroid, it could make getting pregnant more difficult and increase her risk of having a miscarriage if she was able to conceive. “I cried and cried,” she says.
Why (we think) women get fibroidsOne in three women will develop uterine fibroids at some point in her life, but doctors still don’t really know why. The hormones estrogen and progesterone seem to stimulate fibroid growth, which may explain the reason they crop up in women of reproductive age and tend to shrink after menopause. There may be a genetic link (if your mother had fibroids, you’re more likely to get them), and black women are up to five times more likely to develop them.
“One of the first things women ask when they find out they have a fibroid is, ‘Is it cancerous?’” says Erika Feuerstein, a family physician at Women’s College Hospital in Toronto. “Fibroids are not cancerous—they’re benign tumours that develop from the tissue of the uterus itself.” A single cell divides repeatedly, she says, and eventually creates a firm, rubbery mass that’s distinct from the surrounding tissue. “Uterine fibroids may grow slowly or rapidly, or stay the same size,” she says. “Some go through growth spurts, while others actually shrink on their own. Fibroids that were present during pregnancy often shrink when the uterus returns to its normal size.”
Fibroids are often confused with ovarian cysts, but they’re very different. Ovarian cysts are produced by, and usually appear on, a woman’s ovaries, says Catherine Allaire, medical director of the BC Women’s Centre for Pelvic Pain and Endometriosis. “Most cysts are hollow, fluid-filled sacs, while a fibroid is more of a solid mass that grows in the muscle wall of the uterus.” Fibroids can get quite large, ranging from just half a centimetre to 20 centimetres or more—the size of a full-term pregnancy. But, Allaire says, it’s where they grow on the uterus that can have the biggest impact on a woman’s chances of getting, and staying, pregnant.
There are three main types of fibroids. Subserosal fibroids generally sit on top of the uterus—“like a cherry on a sundae,” Allaire says—and usually have no adverse effect on pregnancy at all. But submucosal fibroids (which protrude into the cavity of the uterus) and intramural fibroids (those that grow within the muscle of the uterine wall) can make it harder for a woman to conceive by distorting the uterine cavity, causing difficulties with implantation of the embryo; they increase the risk of miscarriage by disrupting the environment where the baby will grow; and they can also get in the way during delivery (women with fibroids are more likely to need C-sections).
Most of the time, women aren’t even aware they have fibroids because they aren’t causing any issues. But sometimes, as in Aza Mcdonough’s case, the symptoms can be debilitating. “I’ve seen so many women who suffered needlessly for years with pain, heavy bleeding and low iron—and they just assumed it was all part of life,” Allaire says. “If you notice changes in your period—specifically heavier or more painful periods—that persist or you experience pain, pressure or a feeling of fullness in your abdomen, it could be a fibroid, and you should see a doctor.”
Aza Mcdonough’s doctor sent her to an OB/GYN. The verdict: She needed surgery to remove the fibroid. But her pre-op blood work also revealed a pleasant surprise—she was pregnant. “It was a shock,” she says. “My cycle had been off for so long that I had no idea I could even get pregnant.” Her doctor told her the fibroid would complicate things, and it did. As her baby grew, so did the fibroid. “I was massive. It looked like I was carrying twins.”
At five months, her pregnancy was considered high-risk. Her fibroid was getting so large her doctor was worried it could trigger preterm labour—a large fibroid can interfere with a fetus’s growth because it decreases the space in which it can grow, and it also can affect blood supply. She was put on modified bed rest and had to take a leave of absence from work. The fibroid also made it impossible for her doctor to find a heartbeat during her weekly ultrasounds. “I was always worrying about the baby,” she says. “Always.”
Fortunately, she gave birth to a healthy boy and, five months later, returned to the hospital to have a myomectomy, a procedure in which fibroids are removed through an incision along the bikini line. During the surgery, her doctor discovered two additional fibroids on the back of her uterus and removed all three. By that time, the largest had grown to three times the size of her uterus.
Banishing fibroids, once and for all When it comes to removing fibroids, there are more options than there were even a decade ago. The problem, says Alison Jacoby, founder and director of the Comprehensive Fibroid Center at the University of California, San Francisco, is that doctors don’t always share all those options with their patients.
“Gynecologists still tend to equate the uterus with pregnancy and, if a woman is finished having children, they’ll almost always recommend a hysterectomy,” Jacoby says. “While it’s a fine treatment for some people, how women feel about it is very individual. If a woman is finished having children or is past child-bearing age, she may think, Yay, no more uterus, no more fibroid problems! But another woman might want to keep her uterus or have a less-invasive surgery, or at least talk about it and decide what the best treatment option is for her.”
A report by the Canadian Institute for Health Information found hysterectomies are among the top five most common surgical procedures in Canada, and more than 40,000 women had their uteruses removed from 2012 to 2013 alone. It’s still the most common treatment for uterine fibroids.
“It used to be that women diagnosed with breast cancer automatically had their breasts removed,” Jacoby says. “Then doctors started doing lumpectomies and only removing diseased tissue. So when it comes to fibroids, why would you automatically take the whole uterus out?”
Instead of going the major abdominal surgery route with a hysterectomy (which increases the risk of complications and involves a long recovery), women can opt for a myomectomy, which leaves the uterus where it is. There are also newer non-invasive treatments, such as MRI-guided focused ultrasound surgery, in which an MRI is used to find the fibroid and then high-energy ultrasound waves zap it, heating and killing the cells and causing it to shrink.
“A lot of biomedical companies are also developing treatments that deliver energy into the fibroid to kill the tissue, such as radio-frequency ablation,” Jacoby says. “It’s done through laparoscopy (a.k.a. keyhole surgery) and involves inserting a needle into the fibroid and using the heat that radiates from the needle to kill the fibroid cells.” Radio-frequency ablation is not yet a widespread treatment. While the fibroid may shrink by 20 to 50 percent, Jacoby says doctors don’t actually know how effective the procedure is for treating the symptoms that came with it. “The studies don’t follow women for longer than six months to see how well they do compared with other treatments,” she says. “It’s definitely an area that needs more research.”
In fact, Jacoby is frustrated by how little research has been done on fibroids in general. “It’s incredible that they affect so many women and we still know so little about them,” she says. “What really bothers me is we tend to tell women that they don’t need to do anything about their fibroids until they’re having major symptoms. And that’s based on the fact that some women will never develop symptoms, but it also reflects the fact that we don’t have any sort of medicine or non-invasive treatment that’s safe and effective to give women when they first develop fibroids. We don’t know what to do, so we don’t do anything.”
The only current non-surgical medical option for women is Fibristal, which was approved by Health Canada in 2013. The drug shrinks fibroids and helps reduce heavy bleeding, but it’s only prescribed for women with severe symptoms and, because its long-term effects have yet to be studied, is only prescribed for a couple of months. Jacoby thinks we can do a lot better, maybe even by identifying women who are at high risk for developing fibroids and providing treatment to suppress growth early on. “We treat people with high blood pressure so they don’t get heart disease—we don’t wait until someone has a stroke and say, ‘All right, now you should take medicine for high blood pressure,’” she says. “And yet we do that with fibroids. We wait until people have extreme symptoms before we treat them. I hope to see a day when we have a medicine that can keep fibroids in check before women have heavy bleeding and anemia and need major surgery to fix it.”
After her own fibroid surgery, Aza Mcdonough was finally pain-free. Two years later, she became pregnant with her second child, who is now five. But then, six months ago, she went to her doctor, complaining of a pain similar to what she had felt with her fibroids and insisted on an ultrasound, which revealed a new growth on her uterus. (One of the problems with fibroids is they have a habit of coming back.)
For now, though, that fibroid isn’t growing or causing any major symptoms, and Mcdonough isn’t too worried. Her doctor has recommended the standard “watchful waiting” approach to treatment. “Unless it becomes bothersome, they’re not going to do anything,” she says. “Fibroids really did a number on my body the first time, but I’m lucky because I have my children. Now I’m just hoping this new fibroid stays the size it is so I don’t have to go through the surgery all over again.”