Black Women and Fibroids Part 1: A Mother and Daughter Story About Resources
MY MOTHER’S STORY
In 1993, when I was nine years old, my mother, then 39, underwent a surgery that would change her life.
I remember hearing about her diagnosis. I heard things like “the size of a melon“ and the words “remove” and “surgery.” I also have memories of my mother holding her lower belly in a way that felt alarming and concerning.
She was diagnosed with uterine fibroid in 1989 by her black, female OB-GYN doctor. It was at first pea-sized and she was told it was “not a worry or concern.” The doctor told her that it could shrink or could keep growing. Over time, it grew slowly into a lemon. Then, an orange. Then, a grapefruit.
WHAT ARE FIBROIDS?
What are they? Uterine fibroids are non-cancerous tumors of the uterus. Also known as leiomyomata, myomas, or uterine polyps, they develop within the muscles of the uterus, ranging in size from a pea to grapefruit (or bigger). These non-cancerous tumors form during the childbearing years of a woman’s life either as a single fibroid or many, with different locations within the uterus. While they are rarely a cause for concern, they can be if they become too big or there are many present.
She didn’t have to have it removed until four years later. She was feeling heavier in the stomach and she felt her stomach was unable to shrink in when she tried to suck it in. She had no pain— just concern that it was getting bigger.
She was told she had to remove her uterus in order to remove the fibroid.
By the time she decided to have it removed, it was the size of a 16-week-old fetus. Since she knew she was done having children, she decided to have the fibroid removed. She remembers she had three other friends dealing with the same issues at the same time—all women of color. She met with her friends to discuss all of their options.
I went with her to the blood bank—it was just me who tagged along—and I felt a sense of urgency as well as nervous energy. She gave blood in case she needed it during surgery. I saw women in wheelchairs being moved around quickly, one woman had her head in the trashcan vomiting. I was scared, and my mother was brave. She held my hand fiercely and I remember wishing that she was OK. The surgery happened over the summer because she was a teacher and was told she needed 10-12 weeks to recover, but she was feeling fine after three weeks. Still, she remembers how painful the stitches were. She spent seven days in the hospital and visiting her was the saddest thing to me.
My mother wasn’t concerned about stigma. She says she doesn’t feel different without a uterus other than not having a menstrual cycle, which she kind of enjoyed. In 1999, she started getting tension headaches and she feels that this was early onset menopause. After several trips to the neurologist, many prescriptions, and some blood testing, my mother started receiving hormone replacement therapy and that was meant to address the intensity of her headaches.
My mother regrets not doing her own research and relying on her doctor to provide her with answers. She would have preferred an early removal of the fibroid rather than waiting until it got to the size that it did. “She should have told me, as my doctor,” my mother reflects. She wish she knew about more natural ways of healing and would have liked guidance around her lifestyle and diet. She believes that fitness, hydration, rest, and clean, nutritious food are best for recovery and managing symptoms.
My mother had a partial hysterectomy and this was our experience of it. I didn’t fully piece together these memories of her experience until I discovered my own fibroids about a year and a half ago.
26 YEARS LATER
I had an unusually heavy menstrual cycle in the winter of 2017, so I asked my sisters if that was common for them. During this cycle, I also experienced way more intense symptoms than I normally do during my cycle (more fatigue, lethargy, aches, cramps). I discovered in that conversation that both of them had been diagnosed with fibroids and that “they run in the family.” While what we all have in common far exceeds the fact that we are all women of color, the commonality of black women developing fibroids is not lost on me.
BLACK WOMEN AND FIBROIDS
Between 20 to 80 percent of women will develop fibroids by the time they turn 50 years old. And although fibroids can affect all women with uteruses, Black women are about 3 times more likely than white women to develop them. Black women generally develop fibroids at a younger age and are diagnosed sooner than other women.
Part of this may be because research has revealed that Black women are likelier to get fibroids earlier than other women. While on average, women develop fibroids in their 30s or later, Black women often develop them in their late 20s—right in the prime of their childbearing years. Research shows that black women tend to have more severe symptoms, more unique concerns, and different information-seeking behavior for fibroids than their white counterparts.
I initially asked my doctor to check and see if I had fibroids, and she was able to feel them in a standard pelvic exam. I went and got an ultrasound to confirm that I have four.
After my results came in, I met with my doctor again who casually explained that I had cysts in my ovaries and uterus. In tears, I asked, “What does that mean? For me and my fertility?” I was told that I was fine, that the fibroids were fine, and that there was really nothing they could do “unless, of course,” I was trying to get pregnant. As someone who may want children one day, I asked them to clarify.
“Sometimes fibroids can prevent a pregnancy from being full-term,” I asked her if there was something they could do before I got pregnant. It didn’t make sense to me that I would have to wait until I miscarried a child before they were willing to do something about the thing that may have caused the miscarriage. It seemed backward and not preventive. They said I could get them removed surgically, but that they don’t recommend that for people who “don’t experience symptoms” like really heavy bleeding, pain during my cycle, pain during sex, general uterine pain, and miscarriages. I wasn’t satisfied with that answer because I was having symptoms, notably heavy bleeding that resulted in anemia.
Although most fibroids don’t cause symptoms, Black women are also 2 to 3 times more likely to have symptoms, which are:
- Heavy bleeding during your period
- Long-lasting periods
- Pelvic cramping or pain with your period
- Bleeding between periods
- Feeling like you constantly have to pee
- Pressure or fullness in your lower belly
- Pain during sex
I asked if there is a way to shrink them. “Well, Western medicine doesn’t really have a lot of treatment options for fibroids,” my doctor said, and again, this felt really insufficient to me. The conversation could have ended there and I am grateful that it didn’t for me. I decided to look outside of Western medicine to see what I could do to treat my fibroids, to possibly shrink them and better understand the root causes. I asked my two holistic practitioners what they thought.
Stay tuned for part two of this article to hear their perspectives.
Author Bio Nkechi Deanna Njaka, MSc. is the founder of the creative agency NDN Integrated Lifestyle Studio as well as the co-founder of Sitting Matters, a mindful + creative lifestyle brand. She is also a meditation teacher and a 2017-2018 YBCA Artist Fellow. Nkechi majored in neuroscience and dance at Scripps College and went on to complete an MSc in Neuroscience at the University of Edinburgh. With a background in neuroscience and dance, she has spent the majority of her life investigating the relationship between the brain and the body and has always felt the significance of their integration. For several years, Nkechi worked as a neuroscientist as well as a professional modern dancer and choreographer. Through this work, she discovered that mindfulness and creativity are crucial for sustaining individual and global wellbeing. When not exploring mindfulness and other wellness practices, Nkechi spends her time discovering ways to participate more fully in the arts and travel. She currently lives in SF. You can find her here: IG: @ndnlifestylist.