Following My Diagnosis, Five Uterine Fibroid Facts That Changed My Understanding of the Disease
Updated: May 11
A diagnosis of any sort changes your life and evokes mixed feelings. For me, it was relief and anxiety following a Uterine Fibroids diagnosis. Relief because I now knew the reason for my pain and discomfort, and anxiety because I didn’t know what was next. Ask me anything about fibroids prior to the summer of 2022 and I could only tell you three things: 1) they’re common in African American women, 2) they cause heavy menstrual bleeding, and 3) they sometimes require surgeries—either a myomectomy (the removal of fibroids) or a hysterectomy.
In June 2022 I took a crash course in the matter. Out of the blue I experienced pelvic pain and distension, bloating, and a longer than usual menstrual cycle. None of these symptoms were typical for me. So, everything in me pointed to fibroids. I guess you can call it a woman’s intuition. I knew my family history and fibroids were the only way I could make sense of what was happening. I went to the emergency room, had an ultrasound performed, and learned I had three fibroids—two that were shrinking and one living its best life. While my question as to what was happening to me was answered, new concerns were bubbling. How would this impact my life? What did this mean for my future health? I didn’t have control over my fibroids; however, I did have control over my ability to learn more about the disease (I still hate calling it that).
What started off as a simple internet search about Uterine Fibroids and how to manage them on my own, became a deep dive into research articles about fibroid studies, contributing factors, treatment options, and socioeconomic burdens. I quickly learned there was a lot to unpack with this topic and that there are some hard truths associated with the disease.
Why fibroids develop is still unknown
This was perhaps the biggest surprise to me. In this great big world of research, it is still unclear why fibroids develop. While it is known fibroids are the result of one cell of muscle dividing and forming a mass of tissue, exactly what sparks this growth is not clear. What researchers and physicians do know is that there are several risk factors of uterine fibroids: race, family history, weight, lifestyle choices, and diet. Other risk factors being researched include chemical relaxers, vitamin D deficiency, and stress. I checked two boxes: race (being African American) and family history.
African American women are disproportionately affected
All women with a uterus are susceptible to Uterine Fibroids; however, African American women tend to be at an increased risk. Although this information was not new to me, the percentage of African American women likely to develop fibroids was. According to research, more than 80% of African American women will have Uterine Fibroids by the age of 50 and are 2 to 3 times more likely to undergo hysterectomy for fibroid tumors than other racial groups. African American women’s fibroids present earlier in life, grow faster, and include more severe symptoms. Why this is the case is still unknown; however, some research points to a possible genetic predisposition.
That number, 80%, blew my mind. It made it much clearer to me not only the likelihood that I would experience fibroids, but the chances my daughter will as well. I come from a long family line of Uterine Fibroid sufferers. Our fibroids tend to behave as the research suggests. They are large, cause heavy menstrual bleeding to the point of anemia, and have resulted in surgeries—ranging from fibroid removal to partial hysterectomy to total hysterectomy.
There’s more than one type of fibroid
Prior to my diagnosis, a fibroid was a fibroid. There was no distinction between one or another. In my mind they only varied in size. That, however, is not true. In fact, there are three types of fibroids. And depending on its characteristics—type, size, and location—fibroids can influence which treatment options—be it surgical or nonsurgical—a woman is eligible for.
I recently underwent an MRI to determine which type of fibroids I have, and which treatment option may be best. In addition to learning I now had ten fibroids (the largest being the size of a grapefruit) I have two types: submucosal (which are considered the rarest) and pedunculated. In a follow-up with my gynecologist, I have two options for treatment—myomectomy or Uterine Fibroid Embolization (UFE). I had done my homework on both procedures. And given this was the first time I was ever undergoing one, I
opted for the UFE. Uterine Fibroid Embolization, is a procedure that essentially shrinks fibroids by cutting off their blood supply. While the procedure is not full proof (as fibroids can recur), and has associated risks, it is less invasive than surgery and requires less recovery time.
The number of fibroids a woman has can also influence treatment options. Fibroids tend to come in multiples, meaning a woman can have more than one at a time. This is especially true for African American women (we just keep hitting every jackpot except the mega million). Just as fibroids vary in type, size, and location, so can symptoms—that is if a woman experience any. Most women are unaware they have fibroids because they do not express symptoms (they are asymptomatic). For those that do, regardless of fibroid type or location, heavy menstrual bleeding is a common symptom.
Fibroids contribute to socieconomic burdens
The indirect and direct costs of fibroids extend to both patients and health insurers. It is estimated that indirect costs—such as a loss of work—range from 1.6-17.2 billion USD. While direct costs—fibroid-related surgeries, hospital admissions, outpatient visits, and prescriptions—are estimated between 4.1-9.4 billion USD. Those numbers are nerve wracking. Even with health insurance, I worry about the cost of treatment, especially considering the total costs of procedures and/or medication is not covered. Do I want to feel better? Of course. Who doesn’t want to go a day without intense cramps, unexpected bleeding, or lower back pain. But do I want medical bills piling up every month? Hell no.
Not included in these estimates are the cost of products to manage heavy bleeding. Sanitary pads, tampons, and even adult diapers are changed regularly, requiring women to spend more monthly compared to healthier women. As someone on a budget, spending more
money on these products—undoubtedly necessities—is a big concern. Inflation being what it is, I feel like I am making life decisions every time I head to the store.
Fibroids is not a women’s issue alone
Fibroids have implications that extend beyond women. So much so that they are now considered a public health concern. Self, family, work, society, health and wellbeing, and finances are all affected by fibroids. Fibroids have also been acknowledged when discussing healthcare disparities—both in terms of women lacking access to healthcare and their experiences with physician bias. And so, instead of seeing the disease as one in which women must suffer alone, it’s important that its overall impact be understood—not only how Uterine Fibroids impacts one’s quality of life but society. Although my initial thought, my diagnosis did not mean I would be affected alone. My children, husband, mother, work, finances, even my emotional and mental well-being were all affected.
At a glance, Uterine Fibroids did not strike me as this mammoth issue. I saw it as a condition that some women unfortunately suffer through, not a public health concern that also impacts families and society at large. While my diagnosis changed my relationship with my body, my family, and even how I communicate with my own mother about our individual challenges and family history—and how I will relay that information to my daughter, what Uterine Fibroids ultimately did for me was open my mind to learning about the disease. I cannot change that I have fibroids (not unless I get a hysterectomy), but I can work to build community and support around them, share ongoing research, and build awareness. And perhaps through doing these things I can help make this disease a little less of a mystery for another woman.
About the author: Latanya Muhammad is a writer and the founder of CITYS, LLC, a digital content company focused on content creation/writing, editing, and copywriting. To read features and blogs, visit citysllc.com. To connect, submit all inquiries to firstname.lastname@example.org.