Delaying Fibroid Diagnosis Put My Life in Danger

"You have a blood level not conducive to life."

That's what the doctor told me after looking at my bloodwork. It was 2015, and I was 29 years old. After months of heavy menstrual bleeding, I had finally gone to the doctor to get to the bottom of my issues. This was the beginning of my journey with uterine fibroids.

Normalizing Painful Periods

As a Nigerian American, talking about reproductive health was always taboo. Although I knew that my mother and sisters had experienced heavy periods, it wasn't something that we ever really discussed. So when my periods started changing in my late twenties, I felt like it was just part of being female.

But it wasn't. Rather than just a heavy flow, I was bleeding for two weeks at a time, sometimes with significant spotting in between cycles. There were many times when I would bleed through my clothes on the train from my home in New Jersey to my office in New York. It was humiliating, but what could I do? That was just my life.

And then there were the clots—they were the size of my fist and very painful to pass. They came consistently. Still, I shrugged it off.

Life-Threatening Effects

When I started getting light-headed and struggling for breath, I began to suspect that there might be something else wrong. It was my sister, a physician, who finally pushed me to see my doctor.

We had attended church together on a weekend when she was in town. After the service was over, I stood up, and to my horror, the seat was soiled. We cleaned it up quickly, but my sister was understandably concerned. She asked how long it had been going on and turned on doctor mode, looking at the inside of my eyes and mouth and the palms of my hands.

"Nkem, you're pale. You literally look like you have no blood in your body," she said. I knew she was right. I had been pale for a while. I called my doctor and scheduled an appointment as soon as I could. After the visit, my doctor called back with the results and told me to go straight to the emergency room because I had a hemoglobin level of three, which is considered "not conducive to life." That got my attention.

At the ER, they ran a battery of tests, including an echocardiogram, where they discovered that I had an enlarged heart because of a lack of blood. My heart was literally working in overdrive to compensate for the blood I lost through my menstrual cycle. I had an emergency blood transfusion to prevent me from going into cardiac arrest.

Living With Uterine Fibroids

At this point, doctors found one large fibroid tumor on my uterus. The word "tumor" was tough to take. There are so many fears attached to that word. I had so many different emotions running through my mind. What does it mean to have a fibroid tumor?

Luckily, it didn't mean much at the time. Because of the placement of my tumor, my doctor decided to treat it by putting me on birth control, which helped control the bleeding and other symptoms. Then they told me to watch it and wait. Which I did.

I was on oral birth control until 2017 when I switched to the Depo-Provera shot. Since my original diagnosis, I have developed several more fibroids, all of different sizes and in various locations around my uterus. I honestly don't know how many I have right now.

I can't stay on the Depo-Provera shot forever, and when I do stop, I will need to have surgery since the bleeding will likely return even worse than before. But surgery doesn't stop the fibroids from growing back, and every surgery compromises your uterus a little more. I intend to have kids, so I've put it off, hoping that when I find the right person and am ready to have children, I can have a myomectomy to remove my fibroids and capitalize on the time immediately after to try and conceive.

But as of right now, I haven't met the right person, and I don't know how much longer I can wait.

Speaking Up to Help Others

Discovering that I had uterine fibroids has been a rough journey—not just physically. My diagnosis has revealed the culture of silence that so many of us live in regarding reproductive health. Even my own mother, who had fibroids herself, initially brushed my diagnosis off. She had dealt with it. So in her mind, so could I. But the assumption that this was normal almost cost me my life. It may still cost me the chance to have children. I just don't know.

Now, I'm breaking the silence. Too many women suffer from uterine fibroids and don't talk about it, so other women don't know that it's not normal to suffer this much during your period. You shouldn't feel weak. You shouldn't bleed for weeks. There are options, and your doctor should listen to your concerns.

I got involved with the White Dress Project to increase awareness of this widespread diagnosis. Right now, there is no cure. We don't know exactly what causes fibroids, and we won't unless more research is funded. Luckily, we have advocates in Congress like Representative Yvette Clarke, taking up our cause and sponsoring bills that will grant funding for research into uterine fibroids. There is hope on the horizon.