Nicci Morris was a newlywed when she discovered mysterious masses lurking inside her body 12 years ago. The then-Cincinnati-based writer and editor and her (now former) husband were eager to become parents and thrilled when she got pregnant just before the wedding. Unfortunately, the joy wouldn’t last: They lost the child due to an ectopic pregnancy. Trying again months later, they were met with the same results. It wasn’t until Morris began consulting with an in vitro fertilization (IVF) specialist that she learned something unrelated to her ectopic pregnancies was at play inside her womb. An ultrasound revealed she belonged to a sisterhood composed of nearly 80 percent of Black women up to age 50: She had uterine fibroids.
“I was surprised,” says the now-39-year-old Cleveland-based IT professional and entrepreneur, who wound up undergoing a myomectomy, fibroid-removal surgery that leaves the uterus intact. In 2013, she became the mother of a daughter via IVF and embryos fertilized by her ex prior to their divorce. “I had seen several doctors [at the time], and not one had ever mentioned fibroids,” Morris says of her journey to surgery. “I didn’t know much about them. They weren’t talked about much back then.”
Yet fibroids are as everyday as the common cold.
“It is likely that if you’re Black and over the age of 20, you have a fibroid,” says M. Natalie Achong, M.D., of the Yale University School of Medicine’s department of obstetrics, gynecology and reproductive sciences. “Fibroids are benign knots of muscle tissue. Sometimes they’re really tiny . . . sometimes they’re really big. I have patients [who’ve had ones] as big as watermelons,” she says, adding that some women never know they have them. Others experience heavy bleeding, cramping, abdominal pressure and swelling, frequent urination, painful intercourse, fatigue, miscarriages and infertility. Fibroids can be treated by surgery or making sure blood pressure is normal and maintaining a healthy diet. “The curious thing about fibroids . . . is that small ones can cause a lot of trouble, and big ones can cause not so much trouble,” says Achong. “The medical approach to them should be centered around a woman’s symptoms. There are factors that come into play concerning the analysis for treatment in terms of the woman’s age and her desire to maintain uterus fertility. That’s the framework for fibroids,” she says, explaining that, so far, researchers have been unable to determine their cause. “The challenge is being informed, asking the right questions and finding the best possible place to get treatment, if needed.”
That challenge hit close to home for Claire Soares.
An avid traveler, the 38-year-old had just returned from a trip to India when her body hit the skids. Suffering from lower abdomen pain that felt “like fire” and made it hard to walk, Soares—believing she might have picked up a parasite—drove to an emergency room near her northern Virginia home. Unable to figure out what was wrong, doctors sent her to another hospital for further evaluation. It was there that Soares and her parents consulted with a physician who diagnosed the fibroids. “He wanted to perform a hysterectomy immediately; in fact, he insisted.” Because Soares was on morphine and out of sorts, her mother insisted on being presented with other options. Then, Soares suggested the doctor prescribe something for parasites. He gave her the antibiotic Flagyl. Within 30 minutes, her pain went away. “Had I not thought to make that recommendation or my mom hadn’t been there to speak on my behalf, I hate to think what might have happened.”
Fibroids account for roughly one-third of all hysterectomies performed in the United States, about 100,000 cases a year. Hysterectomy rates among Black women are more than double those any other ethnic group. “With the emergency out of the way, I was able to buy myself some time to research other doctors and procedures that would not necessarily cause me to lose out on my ability to conceive,” says Soares, who ultimately decided on a robotic myomectomy—a couple of tiny slits in the belly—to remove her six fibroids.
Doctors warn, however, that even with a myomectomy fibroids can return, so they’ll often recommend that women of childbearing age who have recently undergone the surgery try to conceive as soon as possible. “Even if you get this surgery, it’s not guaranteed the doctors will be able to save your uterus,” warns Soares. “My doctor told me my fibroids would likely grow back and I should try to get pregnant right away, but that wasn’t realistic for me. My plan is to go back and get the surgery again if I need to. In the meantime, I joined a Facebook support group for women with my condition and even advise newcomers on what they can expect if they undergo the procedure. For instance, you suffer from incontinence, sometimes months after surgery, and the recovery time can be daunting. It was at least a month before I could return to work.” Online spaces such as The Fibroid Project also offer support and more information.
Still, like Soares, Morris—who is dating again and open to marriage—isn’t giving up on her dreams of future motherhood.
“I would love to have another one,” she says, “whether that requires having another myomectomy or whatever else needs to be done. I want it to be clear that conceiving and carrying to term, depending on the number and location of your fibroids, may present a challenge, but they are challenges that can be overcome.”