Why Do We Know So Little About Fibroids?

When Erin Flores visited her doctor for a routine physical in 2016, she wasn’t expecting life-changing news. The discovery of a fibroid in the lining of her uterus left her with two conflicting emotions: a sense of relief that she now understood the cause of the extremely heavy periods she’d endured for more than a decade, and a wave of distress when her doctor told her that the fibroids might make pregnancy difficult.

Flores, a marketing professional, was 29 years old at the time, and though she was married, she and her husband had not discussed having children anytime soon. Nonetheless, the news left her confused and sad. Her doctor explained that the hormones generated during pregnancy may increase the size of the fibroid, which could potentially lead to miscarriage, or that the fibroid and the baby might compete for space in her womb. “The thought of the fibroid taking my potential future child’s nutrients was unbearable,” said Flores.

Flores was about to embark on a distressingly common gynecological adventure. Uterine fibroids affect approximately 11 million Americans at any given time. As many as 70% of white people with uteruses — and 80% of Black people with uteruses — will have a fibroid by age 50. They are the most common non-cancerous tumors of the pelvis, primarily occurring in women in their 30s, though only between 25% and 50% of people with uterine fibroids will experience symptoms. These include heavy bleeding, pelvic pain, bloating, infertility or miscarriage, problems with delivery during childbirth, urinary frequency, constipation, and painful sex.

“We don’t have lots of answers and we don’t have a lot of research. I blame part of that on funding in general for women’s health. It’s not great.”

Routine screening for fibroids is not typically done, so it’s up to your OB-GYN to ask the questions that would lead to a diagnosis. Like Flores, many women who have symptoms don’t know they have fibroids; they have learned to adapt, though the condition can make work and social commitments difficult. “They have just learned to live with this,” says Dr. Arleen Song, M.D., an assistant professor of OB-GYN within the Minimally Invasive Gynecologic Surgery unit at Duke University. “Women tend to put up with a lot, so by the time they come to me, they could be extremely anemic, requiring a blood transfusion, and they don’t even know it. It’s completely abnormal but they just think it’s normal.” Frustratingly, even if you have a doctor who takes your concerns seriously, only about a third of fibroids are large enough to be detected during a physical exam.

The list of what we don’t know about this common — and potentially serious and painful — condition seems longer than what we do know. Risk factors for fibroids include family history, genetics, diet, obesity, high blood pressure, stress, and vitamin D deficiency. The only definitive cure is a hysterectomy, though there are several other surgical options that preserve fertility. There is currently no medication that will eliminate fibroids permanently, but newer medications such as Elagolix, an endometriosis drug, have been shown to reduce symptoms and growth. Some doctors recommend hormonal birth control because it can reduce pain and lighten menstrual bleeding, a symptom 30% of women of reproductive age with fibroids experience. Doctors often recommend lifestyle changes, like the nebulous and somehow stressful edict to “reduce stress,” and making changes to your diet, like adding in fiber-rich fruits and vegetables and eating less red meat.

The doctors I spoke with note that the recommended lifestyle changes are great for overall health, but there isn’t any definitive evidence that they’ll affect a patient’s fibroids. “There is one definitive factor linked to fibroids and that is genetics,” says Dr. Monique De Four Jones, M.D., associate chief of labor and delivery at Northwell Health in Long Island, New York. “You have an increased risk of developing fibroids if you have a family history of fibroids. There is not enough literature on other causes. There are some people that feel eating red meat, being deficient in certain vitamins, and consuming too much alcohol are all linked to fibroids, but fibroids have been linked to a number of different health factors.”

“After the fibroid surgery, I’ve never had a more pleasant period in my life. I remember wondering if this was what other women experienced all along and if so, why did I suffer in silence for so long?”

Flores’ doctor recommended that she go back on hormonal birth control to slow the growth of the fibroid in her uterus, but she did not want to do that. After almost a decade on birth control, she was ready to give her body a break. “I insisted on finding a natural remedy and I went where most people go for information — hate it or love it — Google.” After doing some research, she decided to limit “inflammatory” foods such as gluten, dairy, and processed foods. “I knew that there was not enough evidence to show this may be the cure, but I wanted to take control of my body and my cycle, so I took my own measures to take the best care of myself,” she says. “There wasn’t much I could do but understand that eventually, if I decided to have kids, I could have surgery to remove it.”

Two years later, in 2018, Flores elected to have a myomectomy, a surgical procedure to remove fibroids while preserving the uterus. Unfortunately, Flores’ surgeon was not able to remove the fibroids without putting her uterine lining at risk. (Even when myomectomies are successful, around 15% to 33% of fibroids recur after surgery.)

During the pandemic, Flores wanted to try surgery again. This time she and her husband were sure they wanted to try for a baby. “I don't remember feeling nervous or anxious, I just knew I was doing what needed to be done for my future,” Flores remembers. She was referred to a high-risk doctor for a laparoscopic myomectomy, a procedure that would be done through a small incision near her bellybutton. This time the surgery was a success, though Flores was advised to wait a full year before attempting to conceive, to give her uterus time to heal and recover.

Flores and her husband bided their time and luckily there was no new fibroid growth at the end of the year. She got pregnant in 2022 and welcomed her son via cesarean section in February 2023. “The craziest thing of it all is that after the surgery, I’ve never had a more pleasant period in my life,” says Flores. “I remember wondering if this was what other women experienced all along and if so, why did I suffer in silence for so long? I wish I had had more information on fibroids earlier in life to fully understand my body and what was happening.”

Like Flores, Rahisha Wright was diagnosed with fibroids during an annual visit to her OB-GYN. It was 2010, and she was planning a wedding and finishing her master’s degree at the time. “I had no idea what they were,” says Wright. “They didn’t bother me so my doctor and I decided just to monitor them.” A few months later, she noticed unusual new symptoms. “I was in pain in my chest when I laughed too hard or I would lift my leg and feel numbness.” One day she noticed her left leg was swollen and rushed to the emergency room, where doctors discovered a massive blood clot. After further testing, doctors explained that a large fibroid was resting on a vein, causing deep vein thrombosis. They removed the clot.

After her graduation and wedding, Wright scheduled a myomectomy to remove 20 different fibroids. Her doctors described her uterus as the same size as a “woman who was seven months pregnant.” Just one of her fibroids weighed 7 pounds. After the myomectomy, Wright remembers stepping on the scale to find that her weight had dropped 20 pounds. “It was a very tough recovery. I couldn’t stand up straight for six weeks,” she said.

Wright got pregnant three months later; during an early prenatal appointment, her doctor told her the fibroids had returned. Wright had to be on several different medications to manage the fibroids throughout her pregnancy, including steroid hormones and blood-thinning medication. Her doctor delivered her baby via C-section because of her past myomectomy procedure.

Today, Wright has three kids ages 12, 9, and 2. She took the same medication during her second pregnancy, which was otherwise uneventful, and experienced a frightening moment during her third. “There was a point where I thought I may be having a miscarriage because I was going to the bathroom and a big blob of blood came out,” she says. “I went to the emergency room and I found out I had a degenerating fibroid that was breaking down and coming out of me.” The doctor told her that this was ultimately a sign that her fibroids were shrinking. (When a fibroid degenerates, it can be very painful and even sometimes require surgical intervention.)

“Women tend to put up with a lot, so by the time they come to me, they could be extremely anemic, requiring a blood transfusion. It’s completely abnormal but they just think it’s normal.”

Like many women I spoke to for this story, Wright has overhauled her diet to eliminate processed foods and add in more vitamin D. She has also worked to reduce stress. She’s adamant it helped, but experts say there just isn’t definitive proof that lifestyle changes affect uterine fibroids. “We don’t have lots of answers and we don’t have a lot of research,” says Song. “I blame part of that on funding in general for women’s health. It’s not great. We absolutely need to have more studies and research — genetic research, and research on surgical management, as well as medical management — to make progress in this area.”

A frustration with this lack of definitive research has fueled women like Gessie Thompson. Thompson was 30 years old and had been married for four years when she decided to get pregnant. “I have a Type A personality and I was ready to check this box of conceiving a child but it wasn’t happening,” she says. “After six months, I visited my doctor and heard the statement that changed my life: ‘You have fibroids.’”

She describes what happened next as her “million-dollar baby journey.” Over the course of the next 10 years, she had three myomectomies to remove fibroids and two additional surgeries to remove parts of her small intestines that were damaged by scar tissue from the myomectomies. She also went through five IVF cycles, which cost her and her husband $15,000 to $30,000 each.

On her fifth IVF cycle, Thompson conceived. “The birds were singing! The skies were blue! We had so many rocky roads at that point that we just knew it would finally be smooth sailing.” Halfway through her pregnancy, though, Thompson’s doctor told her that her unborn child was at risk because a uterine fibroid was depriving the baby of necessary nutrients and blood flow. Thompson recalls a conversation during which her doctor said, “You might want to consider terminating this pregnancy because now it’s going to become a hostile environment for you and the baby.”

After a decade of surgeries and treatments, Thompson refused to consider that option. She was hospitalized for the duration of her pregnancy; her daughter was born at 32 weeks and during the C-section, Thompson’s heart stopped. Doctors were able to safely deliver the baby and Thompson immediately went into another surgery. “I didn’t even know if I had a girl or a boy until I recovered from surgery,” she says. “I had an amazing, incredible baby girl named Nia. It just broke my heart that my baby had to fight fibroids.”

Thompson underwent one more procedure after Nia was born (a uterine artery embolization) but years later, her fibroids returned and this time she had a partial hysterectomy. According to Yale Medicine, the surgical removal of the uterus is the second most common surgery for women in the United States. Approximately 600,000 hysterectomies are performed annually, 200,000 of which are performed specifically to treat fibroids. Black women are two to three times more likely to get a hysterectomy for fibroid tumors than other groups of women.

“We have to listen to our bodies and be open about things really affecting us.”

Looking back, Thompson does not think she should have gotten any of the surgeries, “not even the first myomectomy.” She wishes she had pursued other, noninvasive treatments. “I had no understanding of what factors were at play or different avenues I could have taken to combat fibroids,” she says now. (Thompson has become what she calls a “health activist and coach,” and works with women who have been diagnosed with fibroids, sharing her story in hopes that it will help other women understand the variety of options available to them when experiencing fibroids.)

Jones, the OB-GYN at Northwell Health in Long Island, New York, understands the particular challenges her Black patients face in finding treatment for their fibroids — and why they might look outside of traditional medicine for answers. Not only are they three times more likely to develop fibroids than white women, but they tend to develop them earlier and suffer more severe symptoms. They are also more likely to need surgical treatment for them. Compounding that is a shortage of Black doctors in the United States and a historic mistrust of a system that has not always recognized — much less adequately treated — the pain and suffering of Black women. Jones isn’t surprised that many women turn to Google — and nontraditional providers — in their search for answers. In her practice, she is adamant about starting off with the least invasive options when treating her patients with fibroids.

The lack of scientific consensus, and limited federal funding to support high-quality fibroid research, has put the burden on women, particularly Black women, to navigate this misunderstood condition on their own. Each year, thousands of women join the ranks of the newly diagnosed and find themselves with the same options that would have been offered to their mothers and even grandmothers. Bringing this conversation to the mainstream is an important part of demanding better care. "We have to listen to our bodies and be open about things really affecting us," says Jones. We can only improve communication and treatment when we know what to look for — and when we know that we aren't alone.