Black women are diagnosed with fibroids at higher rates and usually undergo more invasive procedures as part of their treatment plans. In this piece, Elizabeth DeHaan describes her experience with fibroids, including the moment her gynecologist discovered them, the research she did to inform her self-advocacy in the doctor’s office, and the outcome of the care she ultimately received.

“Did anyone ever tell you that you have fibroids?” I was lying on the exam table at my first gynecology appointment as my doctor pressed down on my abdomen. I wasn’t surprised to hear that I had fibroids. They were something that plagued the women in my family for generations, and as a Black woman, I knew the odds weren’t in my favor. I am three times more likely to be diagnosed with fibroids than my white counterparts, according to a National Center for Biotechnology study. Despite this knowledge, I was surprised at my diagnosis and that they had started developing at a young age. I was only 23 at the time. My doctor assured me they were small. She recommended a vaginal ultrasound to check, and the test revealed I had a few very small fibroids. Fast forward ten years later, and I would have ten fibroids, the largest being 20 centimeters, distorting my uterus to the size of a five-month pregnancy, pressing down on my bladder, and obstructing my colon. 

In a 2013 National Center for Biotechnology Study, uterine fibroids or leiomyomas are noted as the most common type of benign pelvic tumor in women and one of the leading reasons for hysterectomies. They cause millions of women to suffer from debilitating monthly pain, infertility issues, heavy periods, and fatigue, and sadly modern science has no idea what causes them. Researchers also do not understand why Black women or those of African descent are disproportionately affected. 

When I returned to my gynecologist in 2019 for my annual exam, she touched my abdomen and immediately noted that my fibroids had worsened. I knew what she was saying was correct because I could feel the pressure in my uterus when I laid on my back. My period had gotten significantly heavier, and I could no longer sleep through the night without waking up to use the bathroom due to the pressure on my bladder. She said that it would be difficult for me to maintain a pregnancy due to the size. She recommended surgery to remove them and referred me to a specialist.

I left that appointment absolutely devastated. At the time, I was only 29, and the thought of being unable to maintain a pregnancy was difficult for me to hear. I want a family of my own someday and had hoped that by the time my fibroids needed to be removed, I would have already had children. I met with the surgeon and was not convinced that surgery was the best option for me at that time.  After doing my own research, I decided to try holistic approaches such as Acupuncture, Chinese herbs, and changing my diet. Though these might have helped with menstrual cramps, they did not help my fibroids, and they continued to grow. My periods became increasingly heavier, and my uterus became more distended.

In the summer of 2020, once the world was able to resume some normalcy, I decided to switch gynecologists because I didn’t feel my needs were being met.  My first gynecologist was very insistent that I should take birth control for my fibroids and cramps, even though I told her every time that I did not want to take birth control due to the excess estrogen. I did my own research and wanted to try non-surgical ways to remove my fibroids.

At first, I wanted to try Uterine Fibroid Embolization (UFE) which inserts small pellets into the veins in your uterus to stop the blood flow to the fibroids and shrinks them. I found a location that was supposed to be amazing and made an appointment. They let me know they didn’t accept my insurance plan, but I could pay out of pocket for each visit and the procedure. That was not an option. So, I continued researching and found a doctor that specializes in UFE. I made an appointment. The morning of the appointment, they called and had to reschedule due to an emergency. My appointment for July was pushed out to October. At this point, I was beyond frustrated. My periods made me anemic,  with a hemoglobin of 9 (normal for women is between 12 and 15), so I was often exhausted. But I persisted and found a doctor. After they found out that I wanted a consultation for fibroids, they gave me an appointment two weeks out.