Uterine leiomyoma patient: An embolization procedure at MD Anderson changed my life

I was diagnosed with an extremely rare myeloproliferative disorder called Rosai-Dorfman disease in 2014. It’s not fatal, but it does cause severely swollen lymph nodes and other benign growths sometimes. I’ve had several growths removed already, including one from my neck and another from my upper back.

I’m very grateful to MD Anderson thoracic surgeon Dr. Garrett Walsh for performing those surgeries. But it’s the uterine fibroid embolization procedure I had at MD Anderson last fall that completely transformed my life.

My uterine leiomyoma symptoms 

I’ve had terrible menstrual periods since I was a teenager. Even back then, I was passing large blood clots during almost every cycle. It got so bad that my friends and family would look at me sideways sometimes and ask if I was having a miscarriage instead of just a regular period.

Then, around 2019, my cycles got even worse. My flow had always been very heavy, but at some point, I realized I was going through two cases of sanitary pads a month. I’d also developed severe anemia and was losing so much blood that my normally brown skin looked gray.

My uterine leiomyoma diagnosis

I went to five different gynecologists. None of them could help me. I was getting really depressed.

Then, last September, I happened to mention my problem to Dr. Walsh during one of my routine check-ups. He referred me to gynecologist Dr. Elizabeth Keeler. She ordered a pelvic ultrasound. That scan revealed I had multiple benign fibroids — also called uterine leiomyoma — in my uterus. One was roughly the size of a lemon.

Fibroids — especially large ones — can cause exactly the type of problems I’d been having. So, Dr. Keeler recommended medication to reduce the bleeding and referred me to interventional radiologist Dr. Joshua Kuban for a consultation to discuss a procedure called uterine fibroid embolization (UFE).

MD Anderson treats the whole person

I was so relieved to finally have doctors who listened to and believed me that I just started crying. Dr. Keeler reassured me that I wasn’t crazy and it wasn’t all in my head. To me, that speaks volumes about how MD Anderson treats its patients — we’re seen as whole people, not just our diseases.

Uterine fibroids aren’t the same thing as uterine cancer. They’re not even malignant. They’re also not related to Rosai-Dorfman disease. I didn’t know I had them until I got the ultrasound results. But when I told my MD Anderson doctors about my related problems, they took me very seriously. I felt both safe and heard.

My uterine leiomyoma treatment

I met with Dr. Kuban to discuss the embolization. He told me that the arteries feeding the fibroids would not be removed or destroyed. Instead, they would be permanently blocked using tiny particles administered through a small catheter inserted into my wrist. Cutting off the fibroids’ blood supply would hopefully shrink them, which in turn would reduce my menstrual flow.

All of that sounded really good to me. So, Dr. Kuban performed the embolization on Nov. 16, 2022. My life has completely turned around since then.

Before that procedure, I was virtually housebound whenever I was on my period. Now, I can go to the grocery store without worrying about whether I’m going to bleed through my clothes or ruin anyone’s upholstery. I even participated in a 5K fun run for the first time this past February.

The only side effect I’ve experienced so far is a good one: I’ve had to relearn my body’s signals. One of the biggest fibroids was pressing against my bladder for so long that it distorted my perception of when I needed to urinate. Since then, I feel like my life has been given back to me in every way.

Why I’m spreading the word now

I know in my heart that I’m not the only woman going through this. That’s why I’m on a mission now to share my story.

Because so many other women are enduring the same kind of bleeding and cramping I did, day after day. How many of them will just keep right on suffering because they stopped asking for help after Doctor #1 or #2 couldn’t find a solution?

The type of care I received at MD Anderson should be the type of care every woman receives, simply because she says, “Something’s not right here.” And Dr. Kuban and Dr. Keeler did more for me in two months than my previous five gynecologists did over three years. 

That’s why I’m sharing my story today: because no woman should ever have to go through what I did. And if I can save just one of them from the embarrassment of having messed up their clothing or car seats, then my experience will have been worth it.

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