What I Learned from My Experience with a PCOS Misdiagnosis

What I Learned from My Experience with a PCOS Misdiagnosis

Author’s note: This article discusses disordered eating.

I’ve grown used to waiting. And waiting. For what, you ask? My period. Being both a late bloomer (the red tide arriving at age 16), and a dancer, I thought that period irregularity (I’m talking six months to a year) was totally normal. So I ignored it for a while until I realized that something had to change; my body just wasn’t right.

During my first trip to the gyno during my senior year of high school, I was given birth control pills to make me have a period. After switching pills three different times, I found the one that worked for me. At last I was buying tampons, cramping, and craving all kinds of food like the rest of the ovulating females. Now my health was totally in check—or so I thought.

After a while, I was sick of taking the pill. It’s true that it can be physically and emotionally taxing—I felt that I was in a slump, possibly even a little depressed. It was time, I thought, to stop taking the pill and see if my periods would come naturally. Turns out when I ditched the pill, my periods ditched me. This was the last straw; something had to be done.

My next trip to the gynecologist, I was told that I’d need an ultrasound to check out my ovaries. The whole procedure was quite uncomfortable. Having a nurse jam a large metal stick up your hoo-ha (part of the fun of getting an ultrasound for female reproductive organs) and then telling you that your ovaries “look like chocolate chip cookies” is bit off-putting. The reason my ovaries looked this way was because each one was covered with tiny cysts. Just hearing that word “cyst” sent me into panic mode.

The diagnosis: Polycystic ovarian syndrome (PCOS). The typical PCOS patient is overweight with really bad acne and sometimes facial hair. I can tell you that I had none of those symptoms, which is why this diagnosis confused me. The doctor called the case “lean PCOS,” meaning it was the same PCOS but for women with no outward symptoms who still had the ovarian cysts. Then she told me to adhere strictly to the South Beach Diet (because carbs raise insulin levels, which are bad for PCOS), put me on another birth control pill, and quickly pushed me out the door.

I felt discouraged and totally rattled by this news. The new pill I was on gave me two periods each month, sending my hormones out of whack and costing me lots of money for tampons. I needed another opinion.

After visiting a specialist in reproductive medicine (who wore festive rhinestone sperm pins on his doctor coat), I was sent to the lab for blood tests. The results were frightening—my 21-year-old body produced only 15 pg./ml of estrogen, less than that of a postmenopausal woman. The doctor gently told me that I didn’t actually have PCOS, rather, the cysts on my ovaries were a reaction to the extreme lack of estrogen in my body. So I didn’t have PCOS; instead I suffer from hypothalamic dysfunction, meaning my body can’t produce the correct amount of hormones (this can also result in ovarian cysts).

Now, let’s talk about estrogen. Yes, it’s the female sex hormone that helps make babies but estrogen plays a larger role—it helps to build bones and thicken the vaginal wall. It binds to vital organs such as the brain and liver to keep them functioning properly while helping maintain bone health. So anyone lacking in this hormone, like me, is at risk for suffering some major consequences. The physical stress of dance and a bout of anorexia in high school had left my body reeling, said the doctor. He told me that there’s a way to balance the hormones medically, but my body will never again make the correct amount on its own.

My greatest takeaway from the experience was realizing the true fragility of our female bodies. For instance, I had no clue that my anorexia would follow me in this way, robbing my body of the ability to produce its own hormones. I’ll always need estrogen treatment and even fertility treatment when I try to conceive. This whole ordeal has taught me to treat my body well and give it what it needs. It is the vessel of my soul and the only one I’ll ever get.

I also learned to always get a second opinion on anything, no matter what. Doctors make mistakes, and in my experience, it’s always best to see at least one more specialist to hear what she has to say.

It’s only been three days since I’ve started wearing an estrogen patch, but I already feel changes. It hasn’t been much, but there is something inexplicable going on inside me. I find myself thinking more clearly, like in the Claritin commercials when the screen goes from fuzzy to clear, making me more focused and able to feel emotions more deeply. I know that sounds a bit dramatic, but it is entirely true.

As women, we were given estrogen to reproduce of course, but the hormone also allows us to live a richer life, with ups and downs that seem out of our control. But that’s the beauty of being a woman, isn’t it?

Cover image courtesy of Shutterstock.