There’s Nothing Normal About Uterine Fibroids

As told to Shannon Shelton Miller

July is Fibroid Awareness Month.

For too long, I was told my painful period cramps and heavy bleeding were normal. As a teenager, I was put on iron supplements, which should have been a sign I was bleeding too much. But growing up in Mississippi in the 1980s and 1990s, no one was thinking, “Let’s figure out why a healthy young woman who’s active in marching band and cheerleading has to have iron supplements,” or “Why do we need to put this young woman on birth control to help her regulate her period?”

I would eventually learn that I wasn’t alone. More than half of Black women develop fibroids by the time they’re 35, and more Black women get fibroids than white women. We’re also more likely to get fibroids earlier in life, just as I did, and our pain often goes overlooked by the healthcare establishment.

I wouldn’t learn I had fibroids until I gave birth to my twins in 2006. My husband and I also like to say we have 17-year-old twins, Elijah and Evelyn, and Ella, our surprise baby. She was made possible by my second attempt to get rid of my fibroids — a myomectomy. I had the procedure in 2013, and I got pregnant with Ella the next year. It’s a miracle that she’s here.

My fibroids could have been overlooked during my first pregnancy because I had two babies. I was told it was normal to have heavier periods after birth, even though I thought I was bleeding too much and had more cramps. When I finally received a diagnosis of uterine fibroids, I was just told to take iron pills, which made me constipated and were taxing on my digestive system. The other option I was offered was birth control pills, which I also didn’t want because hormonal fluctuations affect my voice and vocal cords. As a professional jazz artist, I knew that wouldn’t work for my life.

I was able to manage my fibroids at first when I had an artist’s residency for three months in Singapore. The doctors there offered recommendations for dietary changes and a more holistic approach that helped. When I returned to the States, the tumors eventually became too much. That’s when I had the myomectomy.

Whenthe fibroids came back a third time, I asked myself, “Am I just a hospitable environment for tumors? Can we even explore that to find out?” Being a musician and having a husband who’s also a creative — he’s an audio engineer and works in ministry — we don't have a lot of money. The only thing available to us at that time was public healthcare, so my providers weren’t trying to get to the bottom of anything. It was just, “Here's what we think will fix it. Have a great day.”

My quality of life continued to decline. I was bleeding so much I needed transfusions. I had to take time off work because I was lightheaded, and I knew I would ruin chairs and carpets. Nobody should have to stay home for a week just because they’re having their period.

And let’s not even talk about sex. I would have to take ibuprofen before sex with my husband because orgasms would lead to uterine contractions that were so painful. I couldn’t enjoy a healthy sex life without fearing the pain I knew was inevitable.

After 30 years, the best the medical system could offer me was a hysterectomy. I said yes because honestly, I just didn't want to die. I felt I was dying every month. The anemia caused heart palpitations, and I couldn't even go up stairs. I sometimes had to go to the emergency room to get a blood transfusion or IV fluid. I had a whole routine to keep myself alive while having my period, including going to rehydration clinics and taking liquid iron. And I couldn’t book shows when I was having my period because I didn't know if I’d be able to continue my performance.

I knew I had to do something to save myself. At age 45, on Nov. 17, 2023, I had a hysterectomy. I wanted to be able to live.

I’m grateful for the support I found along the way. MusiCares, a foundation that provides health and wellness support for artists, gave me a grant that paid my rent for two months until I could get back on my feet after surgery. I also found The White Dress Project, a national advocacy and support group for women with fibroids. I read all the messages on their social media page about women living with fibroids and recovering from fibroid surgery. The women there made great recommendations about resources you can use while you’re recovering.

My sister-in-law, Patricia, is a primary care physician and has been a blessing as my medical advocate. I tell every woman to look for a healthcare provider who can be in your corner, including through telehealth. I’m also thankful to the foundation at Grady Hospital in Atlanta, which helped pay for my hysterectomy. I wouldn’t be alive without them.

Uterine fibroids shouldn’t be dismissed as just a “women’s issue.” I have two daughters, and I want more to be done to make sure they and other women have a better quality of life if they develop fibroids. There needs to be more dedicated research, studies, clinics — anything we can muster to help women find the answers they need, and give them the care and support they deserve.

Resources

The White Dress Project

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