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I Have Polycystic Ovary Syndrome (PCOS), But It Doesn’t Have Me

"September is Polycystic Ovary Syndrome (PCOS) Awareness month. In honor of the millions of women around the world who struggle with this disorder, I am honored to share my story." — Mikayla Tetreault

Writer Mikayla Tetreault

shares her story about her struggles with Polytheistic Ovary Syndrome (PCOS)

When I was in 5th grade, all of the girls were gathered together to watch a video about periods. The video, which followed the story of a young girl who got her period for the first time, taught us about pads, tampons, and all of the other “fun things” that come along with “becoming a woman.” I didn’t think much of it at the time, but when my period arrived a few days later, I was so thankful I already knew how to handle it.

For awhile, my menstrual cycles were relatively normal. They didn’t always come at the same time every month or have the same duration, but that’s completely normal for a girl just beginning her cycle. I never had any painful symptoms, so I was lucky in that regard. But then at the age of 12, I missed a period; I wasn’t too worried because I was told that this “happens sometimes.”

However, nine months later, my period was still MIA. I was only 13 years old and wasn’t sexually active, so my mom took me to my general practitioner, who gave me a prescription for birth control pills. She said that it would help regulate my periods almost immediately—and it did.

As a 13-year-old girl, I was also going through puberty at this time. My hormones kicked in and my skin started breaking out—but this was more than just a few pimples. I tried some OTC products but nothing helped. After years of frustration, my mom took me to a dermatologist at age 16. After looking me up and down, he said, “You’re overweight. You have cystic acne. And I’m positive that you also have polycystic ovary syndrome.”

It's estimated that about 10 million women in the world suffer from polycystic ovary syndrome.

This was not the first time I’d heard harsh—or concerning—news from a doctor. When I was nine years old, I was diagnosed with Type 1 diabetes. This type of diabetes is purely genetic and it runs rampant on both sides of my family. As with my juvenile diabetes diagnosis, I had no idea what my condition was, but I would soon come to learn that I wasn’t alone. The PCOS Awareness Association (PCOSAA) estimates that about 10 million women in the world suffer from polycystic ovary syndrome—it’s considered a hormonal problem for which there is no cure, and its effects on a woman’s body can be frustrating.

Three hormones—androgens (male hormones), progesterone and insulin—are the culprits most responsible for a PCOS diagnosis. Women who experience an increased production of androgens typically suffer from acne, unwanted facial or body hair, hair loss, and sporadic menstrual cycles (androgens increase the lack of progesterone, which affects the normalcy of the cycle). Women with PCOS also battle insulin resistance, which explains why it was so hard for me to control my blood sugars and my weight.

The PCOS Awareness Association says that PCOS is the leading cause of infertility.

It was clear to me that PCOS was here to stay. And it was time to get some answers.

I was initially told by my endocrinologist that a blood test was the best way to test for PCOS, but that I would need to stop taking birth control. I did as I was told and, as expected, my period ceased almost immediately. However, a trip to a gynecologist a few months later revealed that a vaginal ultrasound was a much more efficient way to check for PCOS.

It was uncomfortable having a stranger probe around inside of me, but a few seconds in and I got the answer I came for: My gynecologist tilted the screen towards me and showed me my ovaries—they were covered in cysts. Even though it was what I was expecting, I was scared because I didn’t know what it meant for my future. My doctor informed me that the sheer amount of cysts, as well as their large size, meant that my PCOS diagnosis was quite extreme.

After the ultrasound, she had a long chat with me about PCOS. She confirmed that it was causing my absent periods, was to blame for my now-adult cystic acne, was the reason for my insulin resistance, and could cause infertility. In fact, the PCOSAA says that PCOS is “the leading cause of infertility.”

PCOS Awareness Month is not only a reminder to pay attention to our reproductive system and our health, but also to be kind to the women in our lives. We should think twice about asking sensitive questions: Asking a woman if she’s pregnant, for example, or why she doesn’t have children can trigger a host of emotions. The same applies to looks—if a woman appears to be going bald, has obvious facial hair, or suffers with a distinct amount of acne—maybe consider looking past her physical condition and welcoming her with a smile or compliment instead. Many of us are battling PCOS conditions invisible on the outside, but painful and frustrating on the inside.

PCOS is something that affects every area of my life and something that I have to live with everyday. I have resumed taking birth control pills, but I am still battling with the cystic acne and insulin resistance. These are things that will take time to fix and they will likely never fully go away. My husband and I are also discussing the possibility that it may be difficult to get pregnant. However, we are open to adoption and will have a family, one way or another, when the time is right.

Living with PCOS can feel like a daily battle, but the most important thing I’ve learned is not to let it run my life. I’m so much more than my PCOS diagnosis.

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