This story was originally published on Jan. 16, 2020 in NYT Parenting.
When the woman made an appointment at my office, she was looking for a third opinion. A 26-year-old African-American, she was newly engaged and looking forward to starting a family. But she had fibroid tumors that swelled her uterus as if she were four months pregnant, which meant her stomach had noticeably grown. Her periods were extremely painful; her bleeding was severe. The two other gynecologists she’d seen both told her she needed a hysterectomy. Removing her uterus would eliminate her symptoms — but it would also make her permanently infertile. She was distraught at the idea that she wouldn’t be able to conceive a baby.
As an ob-gyn, I often encounter uterine fibroid tumors, also known as leiomyomas, which are firm, roundish, noncancerous growths in the uterus that can range in size from a pebble to a football or larger. A majority of women with fibroids will not have any symptoms, and their fibroids don’t pose serious health risks. Other women will experience mild to severe pelvic pain, heavy periods, painful sex or urinary or bowel problems. Either way, fibroids are not often associated with infertility — in fact, many women don’t discover they have them until their first ultrasound after becoming pregnant.
Fibroids are the cause of only 1 percent to 2.4 percent of infertility cases. But those numbers are enough to matter, especially for the women affected. And those affected are, for reasons still unclear, disproportionately black women, who receive diagnoses of fibroids roughly three times as frequently as white women. Black women have other issues with fibroids: They start to develop them earlier (in their 20s versus 30s for white women), and their fibroids tend to be larger and more numerous, causing more severe symptoms. Some estimates show that a quarter of black women between 18 and 30 have fibroids, compared with 7 percent of white women; by age 35, that number increases to 60 percent.
We don’t fully know what causes fibroids or why they’re more prevalent among black women, though research suggests that stress may be associated with an increased fibroid risk. Some researchers theorize that a lifelong exposure to racism, combined with limited access to medical resources and a lower overall quality of care, might help explain this disparity in fibroid diagnoses. There is also preliminary research that shows that hair relaxers — chemicals used by millions of black women — are associated with higher incidence of fibroids.
The question of what to do when confronted with fibroids is a tricky one. Fibroids are benign, so if they aren’t actively affecting a woman’s health or threatening her fertility, I typically recommend my patients just leave them alone. In extreme cases, a hysterectomy can be recommended — but that should be the treatment of last resort. Though the number is decreasing, more than 400,000 hysterectomies are done each year in the United States, and fully a third of the hysterectomies done in women between 18 and 44 — prime reproductive years — are done to treat fibroids. As a result, black women are four times as likely as white women to receive a hysterectomy.
There are alternative treatments for severe fibroids that are less invasive and can preserve fertility, but they come with their own side effects. For instance, a myomectomy — the removal of fibroids from the uterus — may cause adhesions (scar tissue) that can interfere with conception later. And fibroids often come back over time. There are also non-surgical treatments for fibroids, including injecting tiny particles into uterine arteries that block the flow of blood to the growth. But this treatment is not recommended as a first choice therapy for women who hope to conceive because it’s been shown to decrease future fertility — though the reasons are still unclear.
The uncertainty and ignorance around the issue determine the choices available to patients like the woman in my office. After ruling out cancer or a bleeding disorder, I reviewed with her all the possible surgical and nonsurgical treatments for symptomatic fibroids. Hysterectomy, she decided, was not an option she would consider. She decided instead to have a myomectomy, and several fibroids, the largest the size of a grapefruit, were removed from her uterus. Despite all the uncertainty around these issues, these stories can still have happy endings. Eight months after surgery, my patient married the love of her life while wearing a form-fitting wedding dress. And four months later, she conceived a healthy baby.
Hilda Hutcherson, M.D., is a professor of obstetrics and gynecology and a dean at Columbia Vagelos College of Physicians and Surgeons in New York.