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A few weeks ago I wrote a Facebook post about a very personal health matter. It was about fibroids.
I began the status by saying how the main thing I wanted for my birthday this year was to have my fibroids removed.
I shared how I’d recently canceled a trip to LA because I knew I’d be in pain and not be able to enjoy a 12-hour music festival. Also, I didn’t want to have constant anxiety or feel self-conscious about messing up my clothes because of my heavy cycle which has happened on numerous occasions.
Moreover, I also talked about how one morning while grocery shopping I kept having to stop in aisles, paralyzed from the pain of what turned out to be a golf ball sized blood clot passing through my pelvic region.
I was hesitant to post the status because I’d been taught (like most women) that “feminine matters” weren’t meant to be discussed publicly–especially in the company of men. I even thought about a time when I’d mentioned my menstrual cycle to my father years ago and he quickly shut me down.
I don’t want to keep suffering in silence
Regardless, I needed to create a forum for this discussion because I felt like I was suffering in silence. And, in consistent advocacy around physical health issues plaguing Black women, the topic of fibroids doesn’t come up enough.
Uterine fibroids are muscular tumors that grow in the wall of the uterus but are noncancerous. They can grow as a single tumor, or there can be many of them in the uterus and can range in size as small as an apple seed or as large as a grapefruit. In unusual cases they can grow to the size of a watermelon.
Menstrual cycles can be extremely debilitating for women that have fibroids. I experience depression, anxiety, extreme fatigue, excruciating pain from cramps and bleeding beyond seven days–all affecting my ability to perform normal, day-to-day duties. Every month I literally dread the arrival of my period.
In addition to those symptoms, the benign growth(s) can cause infertility, complications during pregnancy, anemia from prolonged heavy bleeding and pain during intercourse.
While fibroids are very common, they disproportionately affect Black women.
Fibroids hit different for Black women
The University of Michigan Health Lab reports that, “Nearly a quarter of Black women between 18 and 30 have fibroids compared to about 6% of White women, according to some national estimates. By age 35, that number increases to 60%. Black women are also two to three times more likely to have recurring fibroids or suffer from complications.” And while researchers are unclear as to how fibroids develop in the first place, they point to genetics, diet and nutrition and vitamin c deficiency as possible reasons why Black women are most impacted.
Now, when I wrote this status and received support and comments from over 200 people, I noticed that the bulk of these women were Black. They’d had similar experiences, some sharing stories of how their fibroid troubles were remedied by having hysterectomies.
Also, my aunt called me and ran down our family’s history of fibroids. Apparently more than half of the women in my family had them – including my deceased mother – and almost all had hysterectomies. And in being newly diagnosed with fibroids at the age of 36, I was staring at the same fate.
Fibroids: another case of racial disparities in healthcare
I immediately but dreadfully thought about the history of forced sterilization in Black women and wondered if there was an underlying plan at play.
I started doing research and found stories of Black women who’d been told that a hysterectomy was their best or only option. Sateria Venable was advised by doctors to have a hysterectomy at the age of 26. It prompted her to found The Fibroid Foundation in exploration of other options to avoid infertility.
It also made me think about inequities and racism in the healthcare system that prolong diagnosis and treatment for communities of color.
Famed journalist Tiffany Cross shared her experience with having fibroids, opting to have a hysterectomy but initially having no insurance to pay for it. Christie Gaskins talked about her experience with race based discrimination, saying she’d been misdiagnosed and ignored multiple times before a Black physician finally treated her fibroids.
I know the struggles of being uninsured and misdiagnosed well and I’m sure other Black women do, too. And like these women, I am also encountering obstacles preventing me from having an optimal quality of life.
Fibroids are not only a physical health concern, they’re also a mental health concern. Thankfully, newly enacted legislation to increase funding for research is inching us towards better understanding the causes and effects of fibroids but, the awareness and access are still lagging. Considering the toll they take, especially for Black women, we must grow conversations, advocacy efforts and equity around better reproductive health.