Tanika Gray Valbrun started experiencing extremely heavy periods early in her teen years.
“I was that girl who always had to carry pads with her, felt like I was always on my period, had to wear two panties and biker shorts, always had an extra bag with me,” she told HuffPost.
In addition to the heavy bleeding, Valbrun also experienced painful periods, her abdomen protruded and she felt a constant need to use the bathroom.
It wasn’t until she was about 25 that she received a diagnosis: uterine fibroids. Many doctors appointments and treatments followed, and though she is still on this medical journey, the source of her issues is no longer a mystery.
Although fibroids are quite common, they remain relatively unknown or misunderstood for many. “Uterine fibroids are benign tumors that grow from smooth muscle cells, so they’re often found in the uterus,” said Dr. Sawsan As-Sanie, an associate professor in the department of obstetrics and gynecology at the University of Michigan Medical School. “They can be in the lining of the uterus, the wall of the uterus or on the surface.”
Also called leiomyomas or myomas, fibroids vary in shape, size and number. Some grow slowly over many years while others might remain the same size for a long time and then start to grow rapidly.
“Looking back, I think about how many times I had accommodated my life for fibroids,” Valbrun said. “I was always strategizing what to bring or how to dress because I would be bleeding. I never wore white clothing, even though I love whites and light colors.”
Below, experts break down the facts and misconceptions around uterine fibroids.
Who is most likely to have fibroids?
“Fibroids are highly prevalent, and they become more common as patients get older,” As-Sanie noted.
The National Institutes of Health estimates that up to 70% of white women and 80% to 90% of Black women will develop fibroids by the age of 50.
“Really, anyone with a uterus can experience uterine fibroids, but they disproportionately impact Black women at a higher rate,” Valbrun said. “Black women are more likely to experience them, and their fibroids are more likely to occur when they’re younger, grow more quickly and cause more symptoms.”
Age is a big risk factor with fibroids, as their prevalence increases as patients grow older and then declines in post-menopausal women. Although fibroids are most common in women ages 30 to 40 and in Black women, As-Sanie said that she sees them in patients of all ages, races and ethnicities.
“Mine started in my teenage years, so it’s not just an issue for women in their childbearing years,” Valbrun added. “And even though race is a risk factor, it’s not just a Black woman’s disease ― just like endometriosis is not just a white woman’s thing.”
There are genetic factors as well. A family history of fibroids is associated with a three times greater risk of developing fibroids compared with women without that history, As-Sanie explained. She noted that obesity and nulliparous (the medical term for having never given birth) can also be factors.
What are the symptoms?
Despite their prevalence, fibroids don’t cause symptoms in the majority of people who have them.
“Only about a quarter of women who have uterine fibroids have symptoms that are bothersome enough that they end up needing intervention,” As-Sanie said.
The most common symptoms are related to menstruation, such as heavy bleeding and pelvic pain.
“Any amount of bleeding that interferes with quality of life deserves an evaluation,” As-Sanie noted. “We tell patients if they’re soaking through a pad or tampon more frequently than every one to two hours, that should warrant evaluation. That amount can lead to anemia, low blood counts.”
Valbrun said that she’s had to have at least five blood transfusions over the years to address her severe anemia.
“I was always craving ice and soap, so much that I would be constantly trying to smell them,” she recalled. “My doctor told me it’s called pica, and it’s what happens when your body is deficient in iron.”
In addition to menstrual pain, fibroids can also cause pain during sex and at random times. As Valbrun reported, they may lead to swelling in the uterus and abdomen as well.
“Patients can also have what we call ‘bulk symptoms’ ― pressure from fibroids if they get large enough, feelings of bloating, urinary frequency and urgency, and even constipation or other bowel issues,” As-Sanie said. “Fibroids are also associated with pregnancy-related complications like miscarriage and infertility.”
How are fibroids diagnosed?
“In terms of diagnosis, fibroids are generally diagnosed or at least suspected during a pelvic exam,” As-Sanie said, noting that the uterus often feels enlarged.
If fibroids are suspected, then the next step usually involves imaging, commonly with a pelvic ultrasound ― though tests including sonohysterography, hysteroscopy, hysterosalpingography and laparoscopy can also offer information.
“Some patients come in reporting symptoms, but for others it might be diagnosed during a routine exam,” As-Sanie noted. “They may have had no clinical symptoms. Or if they’re having trouble becoming pregnant, fibroids may be discovered as they look into their fertility problems.”
What is the treatment for fibroids?
If you’re diagnosed with uterine fibroids, the next steps depend on your symptoms. You might not need treatment if your fibroids are small and aren’t causing symptoms or if you’re nearing menopause.
“If someone’s not having symptoms, we typically just survey them over time,” As-Sanie said. “They should get regular checkups to monitor for development of symptoms if they’re not having them. Often we’ll get repeat imaging every year or couple years to monitor for fibroid growth.”
For patients with symptoms, it’s important to examine the symptoms they’re having and what their goals are.
“With heavy bleeding, this can often be managed with medications ― like hormonal birth control pills, progestin-only birth control methods, other pills and injections,” As-Sanie said.
Although those methods are effective for many patients, they don’t work for others. And over time other interventions might become necessary.
Myomectomy is the surgical removal of fibroids, and uterine artery embolization (sometimes called uterine fibroid embolization) is a less-invasive procedure that involves injecting tiny particles into the blood vessels to stop blood flow to the fibroids and cause them to shrink.
“There are also different types of ablations where you can use forms of energy to basically burn them away or make them smaller,” Valbrun said. She added that the recovery process after fibroid-related procedures can be lengthy, noting that it took her about eight weeks to recovery from her myomectomy.
Some fibroids are too small to be removed, and even after you’ve had fibroids removed or shrunk, there’s always a possibility of regrowth or new ones appearing. And some patients have so many fibroids that it wouldn’t be feasible to remove all of them. As a result, the only total cure is hysterectomy.
“The choice of what treatment is appropriate in patients very much depends on both a combination of things, like their age and desire to preserve fertility, as well as fibroid size and location,” As-Sanie said. “Hysterectomy is generally considered a last resort when other things haven’t worked, but it is considered curative and it’s quite common in the U.S. And uterine fibroids and abnormal bleeding are the most common non-cancerous reasons that women have hysterectomies.”
What should you do if you suspect fibroids?
“Any symptoms of heavy bleeding and/or pelvic pain that are bothersome enough that they’re interfering with your quality of life warrant evaluation,” As-Sanie said. “There’s no amount of bleeding or pain we would say is automatically ‘normal.’ If you’re not able to work as effectively or enjoy your life, that is by definition considered abnormal and deserves evaluation.”
Fibroids are relatively common, but they’re also just one of many potential causes for increased levels of pain and bleeding. It’s important to see a medical professional to help figure out what might be at the root of your problems and determine the best course of treatment.
Many experience pregnancy complications or infertility related to fibroids, but medical interventions can help. So if you’re hoping to give birth someday, know that fibroids don’t necessarily prevent that.
“For many women who have fibroids but no symptoms, we don’t automatically recommend treatment in order to get pregnant or have a successful or healthy pregnancy,” As-Sanie said. “The relationship between fibroids and fertility and pregnancy is complicated, but there are many women who have fibroids ― even fibroids that cause symptoms ― that can become pregnant and carry a healthy pregnancy without needing intervention.”
And remember that there’s nothing shameful about fibroids or any other gynecological issue.
“Patients often feel like it’s embarrassing, and their families ― or even physicians they’ve seen ― have dismissed or minimized their pain as being a normal part of a woman’s experience,” As-Sanie said. “This is unfair and unhelpful to women.”
She urged patients and medical providers to help break down the stigma around menstrual disorders.
“We need to improve awareness and diagnosis, as well as reduce the bias and stigma by talking about pain and bleeding so that young girls and women don’t dismiss it as normal or think it’s too shameful to talk about,” As-Sanie emphasized. “That way they can get earlier diagnoses and treatments.”
What else should people know about uterine fibroids?
Valbrun is dedicated to raising awareness and clearing up misconceptions about uterine fibroids. In 2014, she launched The White Dress Project to spread the word, increase funding for medical research and offer support to other people who are living with fibroids.
“I want to make people feel like they are not alone,” she said. “And I wanted the support for myself because I never saw any organized walks or runs or people asking me to buy a T-shirt about fibroid awareness. It feels very lonely to feel like you’re the only one on the bathroom floor in the fetal position. You’re the only one canceling on your girlfriends, the only one not spending the night at a guy’s house even though you want to.”
The name stems from her desire to reclaim the color white as a symbol of hope and empower herself and others to feel comfortable wearing white ― or to do it anyway in an act of rebellion against the limits fibroids can impose. The White Dress Project hosts community events, offers educational resources, supports research and advocates for policy in support of fibroid awareness.
Michigan state Rep. Kyra Harris Bolden (D) has also gotten involved in advocacy after being diagnosed with fibroids in 2020 and undergoing a myomectomy.
“It took me seven weeks to get back to what I felt was 100%, but ever since then, I’ve been on this quest to just bring more awareness to fibroids,” she told HuffPost. “After I shared my story on the House floor during Uterine Fibroid Awareness Month, I got an outpouring of messages from women sharing their fibroid experience and how horrific it had been.”
Bolden has also partnered with organizations to spread awareness, worked on legislation and even helped get funding allocated for fibroid research in the Michigan state budget.
“This condition affects so many women but isn’t widely talked about,” she said. “If I had known it was so common, I probably wouldn’t have waited until my condition got so bad to seek treatment and could’ve had a less invasive surgery.”
Valbrun also wants to spread the word about the different treatment options for fibroids.
“A lot of times, hysterectomy is the only option offered for women to deal with fibroids,” she said. “Black women are more likely to be offered hysterectomy. I was told to have a hysterectomy when I was 26 and use a surrogate if I wanted children, and it was really disheartening. Fortunately, I found another doctor who told me about my other options.”
Of course, many patients are great candidates for a hysterectomy, especially if they are done having children or don’t want to give birth, but Valbrun wants to make sure people feel informed and empowered about this decision rather than pressured.
“Remember that you are powerful and have a say,” she said. “Nobody knows your body like you do.”
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