Rewind Rewind to age 25, nearly two decades earlier, when I first received the diagnosis of having fibroids. I presented with abdominal pain and pressure and was tested for a UTI and sent to see a urologist, which yielded no results. My gynecologist at the time decided to do an ultrasound, and surprise, surprise, she told me I had two small growths called fibroids on my uterus. Her exact words were, "It's nothing to be concerned about this time." I was young and just starting to understand my medical agency, but I had no idea what to ask other than whether there was a treatment. She told me most people have heavy periods, and named other symptoms that I never experienced, and said that the standard treatment was birth control. I wondered why I would take this approach if I did not have the typical symptoms and was relatively unbothered aside from the random pains that brought me into her office in the first place. She attributed my pain to the fibroids, likely because other testing showed no other possible causes. I asked to understand what birth control would do for me and did not receive much explanation. I mentioned surgically removing them, and she said, "If they aren't bothering you, we don't bother them." I took birth control for roughly a month before the misery of the side effects, like crazy acne and bloating, prompted me to stop. 

We never discussed the fibroids after that initial conversation. There was no information provided on what they were, that they could negatively impact my fertility and ability to carry a child, and no real monitoring or mention of family planning, no lifestyle recommendations, no discussion of hormones, or periods, or anything that could have better prepared me for what was to come. And at 25, before we became as tech savvy and knowledge overloaded as we are now, thanks to Web MD and Chat GPT, I happily went along with the rest of my life until my 40s side-swiped me. 

I went through a lapse in my health, and I missed an exam or two, but was ready to resume the practice of good health, starting with figuring out why my periods were heavier and revisiting the fibroids. After my annual well-woman exam, my doctor sent me to do an intravaginal ultrasound. When I came in for the results, I was mortified. 20 Fibroids, maybe more, varying sizes, one the size of a grapefruit sitting on top of my bladder. It was such an invasion of my body that all I could compare it to was the movie Alien.  I was scared and sad that I had no idea this was where those two little acorns were headed. I asked about treatment options, and the only option offered was to get a hysterectomy, a surgery which the doctor explained really "wasn't a big deal." “I go in laparoscopically,” she said, “and I pull out the uterus,” and there was something else about my ovaries staying put and continuing to make hormones, but by that point, I was numb and my ears were ringing. When she said, “It’s not a big deal to have a hysterectomy,” I was shocked. Maybe it’s not a big deal to the surgeon who removes too many uteruses to remember, but it might be a big deal to the patient who only has one uterus to spare. 

Questions about whether I wanted to be a mother were also presented to me during that conversation, but for a host of reasons, I was unprepared to answer. I was never dead set on having children, but not totally against it if I were married and it was in the cards for me. And then there was the stigma of age and childlessness, even if by choice, none of which I was prepared to negotiate with myself at that moment. What I did know for sure was that I always wanted to keep my body intact–keep the organs I was born with, short of cancer or death, where something needed to be removed or donated to save my life or someone else's. I left that doctor teary-eyed and in shock. I blamed myself for not being more vigilant when I was younger, but I know now that the medical system failed me. 

I made it a point to find better care and came across a private facility that treated me with some dignity. The new doctors did not dismiss my desire to keep my uterus as a waste because I am 43 and uncertain about children, and despite my age, they explained egg retrieval and IVF as options still available to me. It was the first experience I had where I felt seen and heard, but I could not afford the out-of-pocket expenses. They gave me my power back, so I went on the hunt for more doctors, coming across a specialist at NYU who offered the option of Uterine Fibroid Embolization (UFE). I'm not advocating for any particular procedure, but rather to say that options were available if doctors were willing to explain them. I learned that what a doctor could offer was often tied to what the doctor’s specialty and knowledge base were.  If the doctor didn't know how to do the procedure or had never heard of it (which is more common than you think), it's likely it would not be offered. Why would I offer something I can't charge you for, that does not advance my skill or practice, or that I care not to learn about? This unspoken reality of the medical sector means that patients, often sick and in distress, have to shop around online for information and options, and then find doctors who are willing to explore those options. 

The UFE is a minimally invasive procedure that allowed me to deal with the fibroids and keep my organs. A small catheter is placed through a vein in either your wrist or your thigh, travels to the uterus, and injects tiny particles that cut off the blood supply to the fibroids. The particles are made of a substance that is not toxic to the body.  The trajectory for childbirth after having this procedure is disputed, as some say it is not possible, and others say it is possible. I made a personal and nuanced decision for myself regarding motherhood, and I was grateful to find something that felt right for my needs. I was also grateful for a doctor who took the time to listen and validate what I was going through and the impact it was having on my life. At NYU, I was given a survey that asked me questions about my symptoms, but also lifestyle and quality of life challenges, and that was when I understood the magnitude of the disruption fibroids caused unbeknownst to me. It was easy to articulate the heavy bleeding and pain, but not so much the social aspects. The survey let me know that what I was feeling emotionally as a result was also real. 

It was this doctor who also sent me to be tested for uterine cancer based on family history, and a hematologist due to the excessive blood loss, which developed into anemia and resulted in me needing intravenous iron infusions for several weeks before surgery. For years prior, my bloodwork would always have some numbers that were off, some more than others, one set of numbers one month and another set of numbers the next, yet no one sent me to see a hematologist or questioned a possible connection to the existing fibroids. Every time I would have blood drawn, I would ask about the levels to no avail. “It was nothing to be worried about,” because the numbers were mildly off and I could simply take an iron pill. 

When I saw the hematologist, I was immediately scheduled for the iron infusions, and after the first infusion, my energy levels improved. The hematologist also discovered that I was a carrier for sickle cell trait and Alpha Thalassemia trait, both of which were never previously mentioned to me, but with nothing for various reasons. I share this only to say that much of what impacts us is interconnected and, without proper care, much of it goes unnoticed in America’s reactive medical system. It took me over 40 years and finding the right doctors and my voice to put these puzzle pieces together. Knowing about the traits has become useful in other medical contexts. 

My UFE was a success, and life is much better now with normal periods, at 45, and so far, no other symptoms are returning. But why did it take 2 decades and a descent into agony to receive a baseline of information and a modicum of care? For all women, our bodies are seen as vessels of reproduction and legacy, yet we do not prioritize the health and longevity of women's bodies. We focus on whether a woman wants to abort a life, but not the value of that woman's experience as a woman in her body. As a black woman, I am used to medical gaslighting and dismissal, experiences that lead to hypervigilance and distrust when engaging the healthcare system. If women’s health is still a questionable priority, then black women’s health is the most questionable of all. 

Let us recall the historical trauma we endured at the hands of a system that once put a price tag on the black woman’s womb. Black women's bodies were once made to breed slaves for profit. When slavery ended, our bodies were subjected to forced sterilizations. One such push for sterilization was in the south, where upwards of 700,000 (that's almost 1 million black women) cases were reported during what was known as the  "Mississippi Appendectomy's" which activist Fannie Lou Hamer brought attention to after going in for a tumor removal and instead being sterilized. These and other transgressions were heavily explored by Dorothy Roberts in "Killing the Black Body: Race, Reproduction, and the Meaning of Liberty."

The system no longer confers value but instead prefers to erase our wombs. Whether we choose to see it or not, the medical neglect of black women's reproductive health is sterilization by omission. Fibroids can lead to infertility, miscarriages, years of suffering, lost quality of life, lost wages from missed work, stigma, and social isolation. Black women are often told to just not worry about it (as we recently saw Venus Williams share about her experience with fibroids) until they plan to have children, and at that point, the situation could be too far advanced. 

Black women are not counseled on how to care for themselves or to monitor the progression of the fibroids. For example, an intrauterine ultrasound with each annual exam would have allowed my doctors to know the rate at which my fibroids were growing and, to some degree, where they were located. It could have helped me track symptoms that might indicate an intervention was needed sooner than I received it, perhaps allowing me more time to make critical decisions about motherhood later in life, like whether to do egg retrieval or IVF, questions asked of me when I was under incredible duress and just wanting the misery to be over. I opted to forgo this process, but I might have chosen differently with time, planning, and support or early education in my 20s and 30s. 

Nearly 2 decades after my diagnosis, there is still a dearth of research and understanding about what causes fibroids, why black women are so impacted (the generational womb trauma is not lost on me), and how fibroids could be prevented or treated without sacrificing reproductive freedom. More funding is needed for research, identifying holistic and non-surgical treatments, early detection, monitoring, and prevention, and overall women's health education and understanding of our reproductive journeys from periods to menopause and the in between, like peri-menopause and fibroids. 

Lupita Nyong'o's recent sharing of her journey with fibroids inspired me to reflect back on my journey and to speak up in support of her voice and the works she's initiating with members of Congress to support fibroid research, education, detection, and intervention. We must use this moment to become a movement, to end the suffering of so many black women at the hands of medical disregard, and to remember the suffering of black women's bodies throughout history as a reminder that our bodies still endure. But now we are ready and we deserve to move from endurance and suffering to thriving and joy, to healing. 

Recognition is not enough. Reparation begins with care. This is how we heal. This is how we truly lean in. To Venus Williams and countless others who continue to share their stories, thank you for your bravery. To Lupita, thank you for your advocacy, inspiration, and push for change.

#WRITTENBYAHUMAN