How Fibroids Disproportionately Affect Black Women
Written to accompany Born Again on this week’s Good Wickedry.
The first time I ever remember hearing the word “fibroids” was in church as a little girl. One of our members had been missing from service for several weeks due to an operation to do with fibroids. During this period, prayers were sent up on her behalf for a speedy recovery and there was great rejoicing when she finally returned to church.
I wouldn’t hear of fibroids again until years later as an adult when India, my business coach, revealed her experience with them. As our relationship evolved into friendship, she described painful, prolonged periods that would cause her to bleed heavily and have to miss days of work. She seemed to find relief from surgery, though- as did June last year.
Although June and I knew each other in secondary school, we didn’t become close until we reconnected in our early 20s. We’ve remained inseparable since and, even with her emigration to America a few years back, have been intentional about keeping in touch through our monthly zoom catch ups. It was during one of these catch ups with Eunice, our mutual friend, that she revealed she had been suffering with fibroids and would soon be having an operation to remove them.
What followed was an emotional conversation in which, perhaps more than a fear of the operation itself, June expressed tearful trepidation about what all of this could mean for her ability to have children with her husband. It wasn’t something that she was in a hurry to do then, as they were still technically newlyweds, but motherhood was always something that she had envisioned. What if it would now never come?
My heart ached for her as I watched her grieve the children that she might never have; so (much like Nwa’s mother in Candice Onyeama’s short film project “Born Again”) Eunice and I encouraged June to have faith that everything would be okay. Unlike Nwa, though, June was able to keep her womb and therefore her chances of having children.
Since that time, I have come to learn that fibroids are noncancerous growths of the uterus that are made of muscle and fibrous connective tissue. Also known as uterine fibroids, leiomyomas or myomas, they can either grow as a single nodule or a cluster. They can also vary in size, number and location. For example, intramural fibroids develop in the wall of the womb whereas subserosal fibroids develop outside the wall of the womb and submucosal fibroids develop in the muscular layer beneath the womb’s inner lining. The way they attach themselves to the womb can also vary in that, although both subserosal fibroids and pedunculated fibroids grow on the outside of the womb, pedunculated fibroids connect to it with a thin stem so that it resembles a mushroom.
The exact cause of fibroids is unknown but it has been linked to genetic changes (as many fibroids contain genes that differ from those in typical uterine muscle cells), hormones (oestrogen and progesterone particularly appear to promote the growth of fibroids because they stimulate uterine lining during development each menstrual cycle in preparation for pregnancy) and ECM (Extracellular matrix, which is the material that makes cells stick together).
Given that fibroids tend to develop during reproductive years (when oestrogen levels are at their peak) and shrink after menopause (when oestrogen levels are at their lowest), being of reproductive age is a risk factor in and of itself- especially as they do not tend to form in people who haven’t started their periods. Other risk factors include having a family history of fibroids, obesity, not having children (as fibroids mostly occur in women between 30-50 years old), starting your period early, starting menopause late, vitamin D deficiency, poor diet (especially one higher in red meat and alcohol and lower in green vegetables, fruit and dairy) and race. In fact, although all people with uteruses of reproductive age could develop fibroids, Black female and uterus having people are more likely to have fibroids than those of other races. For example, according to some statistics, almost a quarter of Black women between 18-30 have fibroids compared to about 6% of white women and that number increases to 60% by the time they reach 35.
In addition to an increased likelihood of having more and/or larger fibroids, Black people with uteri develop them younger than any other races. They also suffer from more severe symptoms such as severe pelvic pain and anaemia due to heavy bleeding; are more likely to have heavy/prolonged periods, pass blood clots during periods and have debilitating pain that impacts their quality of life and ability to engage in physical activities, intercourse, social activities and/or go to work. As depicted in Born Again, Black people with fibroids are also more susceptible to fertility problems and pregnancy complications. Yet, by comparison, many uteri owners don’t know they have fibroids because they have no symptoms. The exact cause of these disparities are unknown but research suggests that Vitamin D deficiencies as well as weight issues, stress, racial discrimination and childhood sex abuse are contributing factors to black people of marginalised genders’ heightened development and experience of fibroids.
Despite the fact that fibroids disproportionately effect Black uteri havers, the journey to diagnosis and treatment is often fraught with obstacles for them. The reasons are multifaceted. One is that since a large proportion of Black women and people with uteri are impacted by fibroids, many of them have just accepted their severe symptoms as normal- not realising that it’s anything but. This means that Black uteri owners are typically slow in picking up the warning signs of fibroids before seeking medical intervention, by which point the fibroids have had an even greater opportunity to grow, multiply and wreak havoc.
Another reason for the difficulty in getting diagnosed with fibroids and receiving treatment is medical racism. For example, a 2016 study of first and second-year medical students showed that nearly half of them believed that Black skin was thicker than white skin and that Black people did not feel as much pain as white people. This was further highlighted in a 2018 US-based study that showed that Black patients were 40% less likely to receive pain relief than white patients and 36% less likely to be prescribed stronger medications such as morphine. The dire consequences of this has most recently been spotlighted via the 2019 Saving Lives, Improving Mothers Care report which revealed that compared to white women, Black women in the UK are 5 times more likely to die as a result of pregnancy complications, twice as likely to experience stillbirth and have a higher miscarriage rate in both natural and IVF pregnancies. Such biases have meant that Black women and uterus havers tend to be distrustful of medical professionals and therefore deterred from engaging with them even when they should. It also means that their real concerns are often either downplayed or ignored when they do finally pluck up the courage to visit a doctor and express them. This is both in general and as it relates to fibroids.
Awareness on both sides is therefore key. It is important that Black people with uteri become more aware that the symptoms of fibroids are not “normal” and seek medical help if and when they suspect them; as soon as possible. It’s also important that these Black people not be afraid to speak up and advocate for themselves if they feel that their concerns are being dismissed or their needs aren’t being met by medical personnel. Likewise, health professionals need to be made more aware of how to spot their implicit biases towards Black women and uteri owners so that they can better perform their duty of care towards them. In diagnosis, this would look like a pelvic exam for initial informal assessment followed by an ultra-scan, hysteroscopy, laparoscopy or biopsy as appropriate. Treatment would range from medicine for fibroid symptoms, medicine to shrink the fibroids and/or surgical and non-surgical procedures. You can learn more about these procedures for diagnosis and treatment here.
Here’s also links to various charities and organisations that support people with the condition:
British Fibroid Trust
Wellbeing of Women
Fibroid Network
FEMISA
Nina Dafe
