Though medical research, knowledge, and technology continue to advance year after year, there is still little known about the root cause of uterine fibroids—a.k.a. noncancerous growths that present themselves inside or outside of the uterus. What is clear, however, is the fact that those benign tumors disproportionately affect Black women.
According to the Black Women’s Health Imperative, Black women are 2-3 times more likely to have fibroids, to develop them at younger ages, to have bigger fibroids, to have more fibroids, and to have more symptoms. By age 35, nearly half of Black women will have experienced them. That number jumps up to 80 percent by age 50. Black women are also hospitalized three times more than white women are when it comes to dealing with fibroids. (I would know, I was one of them.) And on top of all of that, fibroids can also negatively impact a woman’s fertility, potentially cause pregnancy complications, and project a negative outlook when it comes to Black women’s prospects for bearing children.
And it’s for those exact reasons that, in honor of Black Maternal Healthcare Week, The Root talked with a handful of women to discuss their journeys with fibroids and fertility and how they came to be at peace with their bodies, their wombs, and ultimately themselves.
For most of the women we talked to, they revealed they received their initial fibroids diagnosis in their late 20s or early 30s. The others found out in their late 30s or early 40s. While some received their fibroids diagnosis after they had already conceived and carried a child(ren), for the ones who hadn’t, they explained how their diagnosis affected their mental space when it came to deciding whether or not to embark on the road to motherhood.
“Before the diagnosis, I was never really big on the idea of being pregnant or giving birth anyway. But now, I flat out refuse,” one woman, who spoke under the condition of anonymity, told The Root. “A little less than a year after my surgery [to remove the fibroids], I was made aware that I have an abnormally shaped uterus. It’s not clear whether this was the case before my surgery or not. I also had an IUD inserted, and it was rejected less than a month later. Apparently due to this abnormal shape. I figure, if my uterus is giving me this much trouble while it’s unoccupied, I probably wouldn’t survive a pregnancy. That is if I could even conceive in the first place.”
Shellie, who began experiencing issues with her fibroids at 39, explained: “The initial diagnosis coupled with my age did give me pause. I decided to release the pressure of being a mother and if it is meant then I will accept the role with open arms. However, I will say the changes that my body went through did give me concern that if I experienced the things my body had already gone through what would happen when I have a child. I recently spent time with my godchildren and the feeling/connection I was concerned about not having, I experienced it with them. I am at peace if I do or do not have a child(ren).”
After experiencing a difficult birth with her first child and admittedly putting off having another child on the backburner, “Ashley” opted for holistic treatments to get a grip on the heavy bleeding and drop in iron levels caused by her fibroids to no avail. She’s now decided on a partial hysterectomy as the best option for her well-being moving forward.
“I’m looking forward to not having my life revolve around my heavy period,” she explained.
For Shameika, who was diagnosed with fibroids at 34, she went through an initial myomectomy and recently underwent a full hysterectomy (removal of the uterus). The fact that she would never physically carry a child was initially difficult, but she eventually “made peace” with it after learning about other options.
“My doctor told me that even if I didn’t have a hysterectomy, I’d never be able to carry a child to term because my uterus was covered in adenomyosis in addition to all of the fibroids. So hearing from my doctor that it’s still possible to have a child because I still have my ovaries—plus with the help of a surrogate—calmed my nerves and made me feel better about the decision. The option is still there. A lot of doctors don’t even tell you this, they make it seem like a hysterectomy is closing the door forever on it.”
Nicole, 39, echoed similar sentiments as “Ashley,” likening her hysterectomy as “an exciting blessing”:
“The minimally invasive hysterectomy was an exciting blessing because I was beyond over the pain and suffering. During my procedure, my doctor uncovered that I was riddled with fibroids and undiagnosed endometriosis. While I was in recovery, she told my husband that every abdominal surface she could see was covered in some kind of growth and she couldn’t understand how I’d been living/working/parenting through it and couldn’t imagine the amount of pain I’d been in,” she told The Root. “For me, that pain was just a normal part of life. One ovary was removed because it was trapped in tissue overgrowth from the endometriosis, so I only have one ovary. So far, that ovary has been enough to keep me out of menopause. I was amazed by how much better I felt within two days of surgery. I had a few recovery setbacks because I felt so good that it was hard to stay in bed! The feelings of fatigue and exhaustion were gone. The pain I thought was solely coming from my lower back was gone. I felt like a new woman. I believe the junk in my abdomen was diverting resources from the rest of me, and getting rid of it put that energy and those nutrients back into general circulation. It was a remarkable change in my quality of life, seemingly overnight.”
It’s important to note that while fibroids have the potential to cause pregnancy complications, there are still many options for women who have the desire to become mothers whether that’s through egg freezing, surrogacy, or adoption.
“A fibroids diagnosis doesn’t mean that you won’t be successful in having children,” said “Chelle,” who opted to go the holistic route for treatment. “It also doesn’t mean that it will automatically be hard for you. There are women out there who have had successful pregnancies while dealing with fibroids.
It’s also paramount that women know there are different removal routes available for those suffering from fibroids and seeking relief. Hysterectomies, though the most frequently offered, are not the only solution.
“I know the ‘best’ procedure depends on a lot of factors, including the number and location of the fibroids, but I encourage Black women to seek a second and/or third opinion. You know your body best. Don’t be afraid to advocate for yourself,” said L’Oreal, who had her fibroids removed at age 30.
“Nat,” who underwent uterine fibroid embolization (UFE) at 33, explained: “Do what’s best for you. I don’t really know what else to say. People will have something to say if you make it clear that you have no desire to reproduce, and they’ll also have something to say if you want a house full of kiddos. So ultimately, the only opinion that matters is yours. I’d also advise you to not do anything hastily. Reproductive choices are extremely personal, so you should take all the time you need in deciding to have kids. That’s one thing you can’t do a test run on and take back if you realize it’s not for you. And if you wait a little late and can’t have your own, there are always other options. All hope isn’t lost. Just do you.”
“Understand there are different paths to motherhood and your path will find you. I know it is difficult wanting to experience pregnancy and not being able but there is a multitude of ways to give love and nurture beings in this world,” added Miracle, who’s still dealing with fibroids and polycystic ovarian syndrome (PCOS).
Whether you’re still in the pursuit to have children or you’re like me and are still somewhat undecided due to physical reasons or otherwise, let these ladies’ stories be a testament to the fact there’s no right or wrong decision in any of this. Standing at the intersection of fibroids, fertility, and motherhood is a position that can feel uncomfortable and isolating at times, but please know that you’re never alone. You should also know that whatever decision you come to: IT’S OKAY. You’re health and overall wellbeing matter and I hope you find solace in that fact this week and every week to come.