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I Have Fibroids

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When I was 32, I started feeling something heavy in my stomach when I lay in bed at night. Something, I wasn’t sure what, pressing on my bladder. I knew I couldn’t be pregnant, since none of my recent dates had led anywhere special. I reasoned with myself. It was probably a urinary tract infection. I’d never had one and I figured it would be simple to fix.

I waited a few days to see if I was imagining the discomfort – and sometimes I thought I was. There were days when the pressure went away. Then it would return, and I would constantly feel like I had to urinate, throughout the day and night. I knew I had to see my gynecologist right away.

My gynecologist was part of a popular medical practice where all the post-college women in the area went, and she was booked for a month. I was able to make an appointment for the following month – but that seemed a long time to wait with the symptoms I was having. They said I should see my regular doctor if I thought I had a UTI.

Two days later, I found myself telling my general practitioner that I thought I had a urinary tract infection. He asked me to pee in a cup and gave me a referral to a urologist.

I called for the results a few days later. No luck. It was not a UTI.

When something’s inside of you that hasn’t been there before, it often means one thing – a tumor. I had always imagined that if my health took a turn for the worse, I would be brave. But now I was terrified at the prospect of dying young. I hadn’t even had a chance to get married or have kids, which was my dream. It wasn’t fair!

I went to see an experienced urologist in New York City. The waiting room was full of older men. A questionnaire asked about me about my prostate health.The doctor seemed competent. He felt around inside and said it seemed like my uterus was a bit “thickened.”

“Now you have to find out why it’s thickened,” he said.

I told him I had an appointment with my GYN, although it was a few weeks away.

I went back home, feeling very alone and even more anxious than before.

After weeks of waiting to find out why my uterus was “thickened,” the time came to see my GYN. But I got a call that she had a death in the family and had to postpone.

Selfishly, I thought, Well, I may never even get the chance to have a family.

I agreed to see one of her male partners. I had seen a male gynecologist once, when I was 19, and had found him cold and unfeeling. But circumstances being as they were, it was time to give it another shot.

Dr. X. felt around inside me and seemed unconcerned. He said my symptoms could be due to fibroids, which were benign growths in the uterus. He gave me a prescription for an ultrasound. If it turned out I had fibroids, he said, “We can put you on the Pill.”

Eureka – it might be something simple!

When I got home, and did some research, I learned that it was much more complicated then that. What I read was disheartening. Until recently, the treatment for advanced fibroids was to remove a woman’s uterus … completely. If the fibroids weren’t advanced, doctors could slice out the individual fibroids, a delicate process called myomectomy. But often, I read, that women had been told by their doctors that they had to have their uterus removed, sometimes because the fibroids were big, sometimes because the doctors were not experienced in the newer procedure. In some cases, women weren’t even told there was another option.

This alarmed me. Why should women lose their uteruses just because doctors were slow to catch on? Worse, no uterus would mean no children. My heart dropped.

I read a post from a 30-year-old woman who said she was a virgin and found out she had huge fibroids and had to have her uterus removed. The post hit a little too close to home.

The Pill, I found out, was only meant to stop bleeding if your fibroids were causing heavy bleeding – not to shrink or cure them. I didn’t care about the bleeding; I wanted to have babies. I had noticed that my periods had become slightly heavier since turning 30, but I hadn’t realized there was any reason other than getting older.

All my life, I’d known my biological clock was ticking. My mother told me to have my children young. I was well aware that after perhaps 35 or 36, it could be difficult to get pregnant because of older eggs. I was prepared for that. I knew I’d have to decide whether to have kids on my own if I hadn’t met the right person by then. But I thought I still had four or five years of dating ahead of me. I didn’t know I might suddenly have only a few weeks to decide something so difficult, or lose the chance forever. Could my lifelong dream end so quickly? I’d never even heard of fibroids. Why hadn’t anyone told me about this?

I reviewed the mediocre dates I’d been on recently, feeling a clutching, mad desperation. None of them could even remotely be considered prospects. I called an ex-boyfriend a few days after my doctor’s appointment and asked him to have lunch.

“Would it bother you,” I asked him, “if you were dating someone and it turned out they couldn’t have children?”

“Not really,” he said.

His answer was nice to hear, but provided less comfort than I had hoped. Plus, I was reminded that as much as I cared about him as a friend, the romantic feelings were not there.

Apparently, the science of reproductive gynecology was behind other medical fields because until recently, women had their children young, and things like fibroids or infertility were not big concerns. Hysterectomies were fine solutions for women who were done having kids. Eventually, it would probably become routine to treat fibroids differently, maybe without surgery at all. But some of us couldn’t wait for that time. I didn’t have the luxury.

I received my ultrasound results. My uterus contained three or four small fibroids, a few centimeters a piece. Nothing to be done right away, my doctor said. There was still space in my womb to have children … for the time being. I could wait and see if the fibroids got bigger.

But I couldn’t just sit around waiting. Obviously they had grown already. They would grow more. And how long would that take? I found books about “natural cures” for fibroids. They suggested that estrogen increased the size of fibroids, and they listed healthy foods to eat to avoid that fate, and possibly even starve the growths.

So I went on an extreme diet: No meat, no saturated fat, no sweets. Soon I literally began shrinking. One night, I found myself having lettuce with a bit of dressing for dinner. Each bite of the wrong food could prevent my future children from being born, I thought. People at work said I was getting too skinny. The crossing guard at the corner said my face looked sunken in.

Life continued that way for months. Then the pressure on my bladder got worse.

I had a follow up ultrasound. This time it showed something different. Instead of small fibroids, there appeared to be one giant fibroid. Apparently, during different times of the month, the images showed up differently. It would have to come out, the doctor informed me, lest it push all my other organs aside. I would need surgery soon. But there was good news too. It appeared to be on the outside of my uterus, not on the inside. It was pedunculated (the medical term for “on a stalk”) and the doctors would not have to invade my womb to remove it.

My health insurance at work changed just before the surgery. I had to stop seeing my female doctor and see a male doctor covered by my plan.

Dr. Y., had a gentle manner.

“You’re 32, so we’d want to preserve your fertility,” he said.

I decided to follow friends’ advice and get a second opinion, since this was surgery after all. I’d heard that for fibroids, the best doctor to see was a “reproductive endocrinologist.” These days, they’re more often known as fertility doctors.

I hauled my ultrasound films to New York City and let a specialist have a look. In his German accent, he assured me that a myomectomy was appropriate and routine and my regular gynecologist could do it.

I was 32 and had never had major surgery or been under anesthesia. I’d led a pretty innocent life. What if I never woke up?

On a warm morning in March, my father brought me to the hospital around 8 am. I was wheeled into the OR.The anesthesiologist put the little plastic mask over my nose and told me to count to ten. It was hard to breathe.

“Feels weird,” I said.

“Yes, it feels weird,” the anesthesiologist said.

“Be careful with my uterus,” I muttered before fading into unconsciousness.

Then, in what seemed like seconds later, I woke up.

“It’s over,” my doctor said.

I looked at the round clock on the wall, its second hand moving silently. It was after eleven. I couldn’t imagine what had gone on while I was unconscious. My doctor said the fibroid was the size of a football. He said it probably had been growing there since I’d started having my period, when I was almost 14.

I recovered over the next four weeks, but I’d read that fibroids often reoccurred within five years, so I kept up my diet, watching every single thing I put in my mouth, living in constant fear of never having children. And yes, of course, I know I could adopt – but it’s often a long and expensive process, not always easy for a stable couple, much less a single woman. It’s not the breezy answer that some make it seem.

I turned 33 and 34. I continued with followup ultrasounds and my diet.When I finally did fall in love and get married – at 36 – I asked my doctor if I could have an ultrasound in preparation for having children.

The ultrasound showed a tiny fibroid, not likely big enough to get in the way of pregnancy. Sometimes fibroids even shrink during pregnancy, although no one knows why. They can be monitored to make sure they aren’t crowding out the fetus.

When I became pregnant with my son, at 38, the small fibroid appeared on the initial few ultrasounds. Then it disappeared. I gave birth to a healthy baby boy, and almost two years later, am due to have a baby girl.

When I was trying to figure out my future in my 20s and early 30s, I didn’t know what the hell I was doing. Most women don’t research their individual fertility until the time finally arrives to have children, and by that point, it may be too late. Perhaps someday, considering how long it can take to get to such a stable place, doctors will give female patients ultrasounds or other tests earlier in life to check their reproductive health. I have friends who ate fatty foods, smoked, and drank through their 20s and 30s and had no reproductive problems whatsoever, and I have others who maintained an even healthier lifestyle than mine but couldn’t get pregnant when the time came. Sometimes it’s hard to predict. For my part, I credit dumb luck – along with the myomectomy that removed the huge, round fibroid that was growing on my uterus. When I look at my babies –the one with me and the one on the way — I know that whatever experiences brought me to them, it was worth it.

Caren Lissner’s first novel, Carrie Pilby, was re-released in 2010. Her website is carenlissner.com.

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