Between bleeding and cramps, periods are inconvenient for women at the very least.
But in 2014, I started to think that my period was actually going to kill me.
By the beginning of August, my period had lasted over eight weeks.
My cramps were so excruciating. I was yelling in agony and nearly crying from the pain.
I couldn’t imagine feeling any worse and surviving. Or being more terrified of my own body.
Over the course of several days, I went to the hospital for various doctor’s visits. Eventually I was referred to a local OB-GYN.
When my appointment with her came, I was hopeful.
I didn’t realize how dire my health situation was.
The doctor arranged for me to have surgery that same afternoon.
But I finally learned the cause of my seemingly endless periods and severe pain: fibroids.
That day, I underwent a myomectomy, which is a procedure to remove fibroids from the uterus while leaving the uterus in place, in contrast to a hysterectomy.
Black women face more severe fibroid symptoms
Fibroids are benign tumors found within or on the uterus. They can grow as large as melons. Symptoms include excessive menstrual bleeding, painful cramping, and pelvis and lower back pain.
These excessively heavy periods and their accompanying pain can affect a woman’s ability to participate in normal activities, including going to school or work.
According to Lauren Wise, professor of epidemiology at Boston University, “Approximately 30 percent of reproductive-aged women are diagnosed with fibroids.”
Yet studies reveal that while “approximately 70 percent of white women will have uterine fibroids by age 50,” that number is greater than 80 percent for African-American women.
In addition to this, black women are “more likely to report severe or very severe symptoms,” Wise pointed out.
Efe Osaren, a 29-year-old African-American midwifery student in El Paso, TX, was in agony due to fibroids.
“It got to the point to where I was throwing up and I couldn’t eat anything all day. I was in pain for three days straight — nonstop,” Osaren recalled.
“Tylenol stopped working. Advil stopped working. Ibuprofen stopped working.”
When Osaren attempted to get a diagnosis for her condition, she faced an uphill battle.
“I went to the doctor and told her I needed a vaginal ultrasound. She did massages over my uterus and [I think because] I didn't make any painful noises, she was telling me ‘Oh, there’s nothing …’”
Osaren pushed for an ultrasound, and it was granted.
She credits her knowledge of women’s healthcare for helping her.
If she hadn’t been determined to seek a solution, her fibroids might not have been found.
There’s been speculation about why Black women with fibroids have more severe symptoms than other women.
However, Wise acknowledges that regardless of this, “The truth is, we don’t really know what contributes to the severity of symptoms in black women and we cannot necessarily point to what they should consider to reduce their risk.”
What may be putting Black women at greater risk
Regardless of unknown determinants, Black women should be aware that something as innocuous as our hair can play a role in our bodies’ connection with fibroids.
Central centrifugal cicatricial alopecia, which causes scarring along with hair loss, is the most common form of alopecia among Black women. According to some recent research, women who have this type of alopecia have a heightened risk of developing fibroids.
There’s also an association between fibroids and hair care products. Scores of Black women use relaxers to straighten their hair.
However, these products contain chemicals known as phthalates. Often referred to as “fragrance” on relaxer packaging, the U.S. Food & Drug Administration (FDA) doesn’t require them to be explicitly labelled.
Users may not realize that these chemicals stimulate estrogen production, and estrogen dominance, or having too much of the female hormone compared to progesterone, contributes to fibroid growth.
Why black women wait longer to get treatment
While symptoms for Black women are more severe, they also wait longer than white women to get treatment.
Dr. Tami Prince, OB-GYN and medical director for U.S. Healthworks in Marietta, Georgia, treats women who have fibroids. She is also a fibroid patient. Dr. Prince realizes that dealing with fibroids can be trying.
She told Healthline, “A lot of women suffer in silence... especially in minorities, I see it a lot.”
One study noted that 42 percent of African-American women wait four or more years before pursuing treatment for fibroid symptoms. That’s compared to 29 percent of white women that wait longer than 4 years to seek care.
However, absent from this report is a discussion of why they may avoid seeking help for their healthcare issues.
Consider the impact of dealing with this type of professional: If someone has had an unpleasant experience with a doctor, she might not want to risk having any other negative experiences. Patients are concerned that the system doesn’t take them seriously.
Many Black women who neglect their own healthcare needs may also do so because they’ve had to prioritized other concerns.
For instance, there are those who are responsible for their relatives: Over 75 percent of caregivers are women, and according to a report by the Family Caregiver Alliance, African-American caregivers “spend an average of 20.6 hours per week providing care.”
In the majority of cases, this is in addition to other obligations, including full-time employment.
Studies also show that African-American and Hispanic caregivers, compared to their white and Asian counterparts, experience higher burdens from caregiving.
When you’re absorbed in ensuring that elder or younger family members’ needs are met, it can be easy to overlook your own.
Reflecting on this issue, Prince stated a critical truth: “You can’t give proper care to others if you’re not getting proper care yourself.”
Fibroids have cancerous connections for Black women
There’s a history of cancer in my family. I admit I was nervous when I first read that fibroids are a type of tumor. Thankfully, they’re benign.
Unfortunately, among Black women, there’s a strong connection between fibroids and endometrial cancer.
Wise was the lead researcher on a study which concluded that Black women who have fibroids also face a 40 percent higher risk of endometrial cancer.
She explained that “According to the unopposed estrogen hypothesis of uterine cancer etiology, any factor that increases estrogen levels or decreases progesterone levels could plausibly increase cancer risk.”
Therefore, it is reasonable to conclude that the likely connection between cancer and fibroids is an estrogenic environment.
Is it possible for a patient to determine if she has endometrial cancer and not fibroids? After all, both conditions share a common symptom in endometrial bleeding.
Wise noted that an endometrial biopsy, or a procedure where a sample of the lining of the uterus is taken, is needed to make the definitive diagnosis.
Preserving fertility and treatment options for fibroids
When treating fibroids, various options are available.
This is especially important for women to know, considering the impact that medical intervention may have on fertility.
In the U.S., 49 percent of all hysterectomies are done to relieve “fibroids and abnormal bleeding.”
Impacted disproportionally, African-American women with fibroids are 2.4 more times likely to have hysterectomies than white women.
Yet Dr. Chantel Cross, reproductive endocrinologist with Johns Hopkins Medicine, points out that we cannot be sure of the specific reason that African-American women opt to get hysterectomies at such a high rate.
It could be “because those are women who are done with childbearing and are older, or if they’re just presenting with such advanced stage disease that a myomectomy isn’t a viable option,” she said.
Ultimately, if a hysterectomy, or full removal of the uterus, is recommended to you, it’s important to understand its implications, even beyond losing the ability to get pregnant.
Prince emphasizes the importance of hysterectomies being used as a last resort. “It’s actually a good thing to keep the uterus in place. When we start removing major organs the pelvic floor can drop.” A weakened pelvic floor can lead to other issues such as incontinence.
Fortunately, beyond hysterectomies, there are medical treatments which can alleviate fibroid symptoms.
These alternatives may help Black women, 48 percent of whom report concern over how fibroids will affect their fertility, compare to 19 percent of white women.
“I went a whole year using a maxi pad almost every day,” 44-year-old Melissa Hunter recalled.
Her fibroids caused extreme discomfort, and she was at the point “where I did not want to leave the house and I [found] relief actually sitting on the toilet because I had huge clots that I was passing.”
Since that time, her condition has improved, thanks to getting an intrauterine device (IUD).
“I now have an IUD that was put in on December 11th, and this is the first month that I have not had a period that has been severe,” Hunter said.
In addition to IUDs, Cross notes that when treating fibroids, “there are options for therapy including birth control, and other hormonal agents which are generally first-line prior to surgical interventions.”
Nevertheless, if a surgical option is necessary, “I think for a woman that desires to have children in the future, a myomectomy is the way to go,” she said.
Unlike a hysterectomy, during a myomectomy, fibroids are removed from the uterus, leaving it intact.
In addition to conventional medical procedures, accessing one means of fibroid relief may be as simple as a trip to your health food store.
“There’s been a lot of research looking at the role that vitamin D specifically may play in fibroid disease development and growth,” Cross observed. Indeed, various studies reveal that Vitamin D has been proven to reduce the presence of fibroid cells.
Overall, it can be comforting — even liberating — for patients to remember that they’re not alone, whether they join an online support group or share offline with their friends.
These days, in the aftermath of her treatment, Hunter is thankful to share her experience.
“I think the best part of it all is that I’m not afraid to talk about what I’ve been through in terms of everything and still be hopeful,” she said, reflecting on her experience. “By my being open and talking about the fibroids and the pain, I'm learning that other women are having the same journey.”