It Took Three Years for a Doctor to Finally Diagnose my Uterine Fibroids

July is Fibroid Awareness Month.

Earlier this year, I was diagnosed with uterine fibroids. It was inevitable. As a 30-year-old Black woman with a family history of fibroids, it was a matter of “when” and not “if” I’d suffer the same fate.

According to The Fibroid Project, about 70 to 80 percent of women are affected by uterine fibroids, which are benign tumors within the uterine wall. African-American women are disproportionately affected, with some studies suggesting that uterine fibroids are three times more prevalent in Black women than white women. Lucky me.

About three years ago, my periods became insufferable. I’ve always had a hate-hate relationship with my menstrual cycle (who doesn’t?), but this was beyond your typical bloating and cramps. My period had become abnormally heavy and more painful—I knew something was wrong. I mentioned the symptoms to my OB-GYN, knowing that they mirrored those of women with uterine fibroids, and she switched my birth control from the patch to pills.

I began taking birth control pills, waited the requisite three months for my body to adjust, and noticed absolutely zero difference in the bleeding and cramping.

So we tried another pill…and another pill…and another pill…until finally, my doctor recommended that I get an IUD to lighten and shorten my periods. (At this point, they were lasting for weeks on end). Because I was still relying on my doctor back in Maryland, I needed to find a new doctor in Chicago who could help me with my IUD. I scheduled a consultation with a coworker’s doctor and was finally on my way to a normal period—or so I thought.

As I wrote here previously, I got my IUD in November 2016 (days after the presidential election, coincidentally)—but once again, after waiting a few months for my body to adjust, I noticed that my period had gotten worse, if that was even possible.

In March 2017, I went back to my doctor and she ordered an ultrasound to locate the IUD because she was unable to find the strings (how reassuring).

When the results came back, they confirmed what I’d known all along: I had uterine fibroids.

Two of them, in fact: one was 5.6 cm and the other was 4.8 cm.

“Okay, great,” I told the doctor when she called me with the results. “How are we going to get rid of them?”

What the doctor said next shocked me.

“Oh, they’re not that big of a deal,” she said. “You can just leave them there.”

Umm…excuse me?!

At this point, I’d bled through both an ultra-sized tampon AND a pad onto my sofa cushion while watching TV. One night, I had to wake up every hour on the hour to change my tampon. Not to mention the moments when I was holed up in the bathroom, both at work and at home, for 15 to 20 minutes at a time because I literally could not move. So, no, I was not going to “just leave them there.”

I immediately sought a second opinion and another coworker came to my rescue with a referral to her doctor. I met with the nurse practitioner later that week, described my diagnosis and the symptoms. “We’re going to get to the bottom of this,” she assured me. And I believed her.

Finally, I felt as though a health care professional had actually heard me instead of trying to dismiss me.

The nurse practitioner ordered an MRI, which revealed that there were indeed more fibroids than the original doctor had let on: 10 in total.

(And oh, by the way, it appeared as though my IUD had actually gone MIA. Interesting, because the former doctor had definitely “confirmed” the IUD was still there.)

After an abdominal X-ray to verify that the IUD had indeed left my body, I was referred to a urogynecologist. During my consultation, he shared that my uterus was the size of a four months pregnant woman’s uterus (!!!). He then said that an open myomectomy, also known as an abdominal myomectomy, would be the best option to preserve my uterus because my husband and I want to have kids in the future.

Essentially, I would be put under and the doctor would create a “bikini cut” incision on my lower abdomen to remove the fibroids.

“We’re going to make your uterus new again,” the doctor told me.

Leading up to the surgery, I had to take iron so that I would no longer be anemic, and received two doses of a shot that basically put my body into early menopause to stop the bleeding and shrink the fibroids.

The entire procedure took about two hours and, typically, patients stay at the hospital for two nights. I was able to go home after one night, but my recovery was another story. I couldn’t get in and out of bed without help from my husband for the first few days. And nobody warned me about the nausea and constipation that would ensue.

Luckily, I was able to get around on my own after a week or so, but a complete recovery can take anywhere from four to six weeks on average.

At my two-week follow-up appointment, my doctor informed me that he’d removed 17 sizable fibroids during surgery.

“The average uterus weighs 50 grams,” he said. “Your fibroids alone were 200 grams.”

Say what now?

And, because I had so many fibroids, they’re likely to return sooner rather than later—which means we’d more than likely need to bump our baby timeline, lest I undergo another myomectomy in the near future (no, thanks).

Getting my fibroids removed was a long, drawn out process that took three years. But some women wait even longer than that (up to five years) to talk to their doctor about heavy menstrual bleeding, according to The Fibroid Project.

I’m just glad I got a second opinion, or else I would still be nearly bleeding to death every month. Only time will tell how long it’ll be before these fibroids come back with a vengeance. But until then, I’ll be enjoying my *normal* periods. Moral of the story: trust your gut and know your family history. It could save your life.