Life with Polycystic Ovary Syndrome

 

I have Polycystic Ovary Syndrome (PCOS). I’m hesitant to share the private details of my battle with PCOS in such a public way, but I think it’s an important topic to discuss. My intent with this post is two-fold: First, I want to let others struggling with PCOS know they’re not alone. Also, I want to educate friends and family members of women and girls with PCOS so they’ll have a better understanding of what it’s like to live with this condition.

In my early teen years, I began to realize something was wrong with my body. On the one hand, it was just a gut feeling: I didn’t feel quite as feminine as my girl friends seemed to be. On the other hand, it was a physical problem: I wasn’t getting my period every month. In fact, they were few and far between. When I was a kid, there was no internet to search for answers. I told my doctor about my concerns, but she said not to worry. She explained that a lot of girls have irregular periods until they’re about 18 years old. I also had some acne, but that was typical for a teenager, too.

When I started college at age 18, things only got worse. My friends who’d had acne developed clear skin, while my acne increased in frequency and severity. My friends were gaining the “freshman fifteen,” which made them look more like women than girls. I was still the same skinny kid at 5’6” and 100 pounds. I also became very self-conscious about my hair – a little too much on my face and body while the hair on my head was getting thinner.

I privately battled depression throughout my teens and early twenties. I had drastic mood swings and was often quite irritable. Imagine this, ladies: your period is due in a few days. You’re dealing with PMS symptoms. Then your period doesn’t come. Your PMS symptoms continue until the next time you get your period…six months later!

I went to see a gynecologist, and she put me on birth control pills to regulate my periods. I started to feel a bit more like myself. I still had some acne, but it was less severe. I continued to eat like a linebacker without gaining any weight. I was still somewhat depressed, but life went on. I graduated from college and got married. Every time I saw a new doctor, I explained my symptoms and asked if anything more could be done. The doctors never had any answers. When I expressed concern about being able to get pregnant in the future, they would always say something like, “We’ll worry about that when the time comes.”

In 2004, Derek and I had been married for three years, and decided we’d like to have a baby. We tried unsuccessfully for about 8 months. I went to see my doctor, who had a young, female resident doing patient intakes that day. When I told her about my symptoms, she said, “I think I know what you have! I just went to a lecture on this. It’s called polycystic ovary syndrome.” Finally, at the age of 27, I was diagnosed with PCOS.

Many different versions of PCOS exist, which is part of the reason it’s so difficult to diagnose. Classic PCOS symptoms include:

  • irregular or absent periods
  • elevated levels of androgens (such as testosterone) which can cause acne, excess hair, or baldness
  • weight gain/difficulty losing weight
  • multiple follicular cysts on the ovaries

However, many women have PCOS without displaying all of these symptoms. In my case, I don’t have elevated testosterone levels, but I have extremely low estrogen levels. My body’s ratio of testosterone to estrogen mimics that of someone with classic PCOS. My version of PCOS makes it difficult to keep weight on rather than lose it. Why? I have no idea. Many women with PCOS are insulin resistant, which means that glucose (sugar) isn’t properly absorbed from the bloodstream and turned into energy. This results in high blood sugar and can increase the risk for diabetes.

I was blessed with the opportunity to see a reproductive endocrinologist at Johns Hopkins Hospital in Baltimore in 2005. She validated everything I’d been feeling for nearly 15 years. She was visibly perturbed by my stories of doctors who had failed to diagnose me. Here’s what people need to understand about PCOS:

“Regular menstruation is important for the prevention of endometrial cancer. Women with PCOS are three times more likely to have endometrial cancer than women without. When a woman isn’t menstruating on a frequent basis, the lining of the uterus (endometrium) can begin to grow excessively and undergo atypical cell changes resulting in a precancerous condition called endometrial hyperplasia. If left untreated, this can develop into full endometrial cancer.”  –  Sydney Parker, “When Missed Periods Are a Metabolic Problem.” The Atlantic, June 26, 2015.

Women with PCOS are at higher risk for obesity, type 2 diabetes, heart disease, high blood pressure, sleep apnea, depression, anxiety, abnormal uterine bleeding, and infertility. In fact, PCOS is the leading cause of infertility among women.

Doctors aren’t sure what causes PCOS, and there is no cure for it. Symptoms can often be alleviated with medication and/or weight management. For example, I take birth control pills to regulate my menstrual cycle. (I tried several different kinds before I found the one that works best for me.) I also take spironolactone, which reduces acne by mitigating the effects of androgens on the skin. When I was trying to get pregnant, I took fertility drugs, which resulted in two full-term pregnancies. Many women with PCOS take medication (such as Metformin) to combat insulin resistance and prevent diabetes. Some women may need medication for depression or anxiety, too.

If you are struggling with depression or anxiety due to PCOS, please tell your doctor or a trusted friend. If your doctor downplays your PCOS symptoms by calling them “cosmetic,” you may want to find a new doctor. A hormone imbalance in your body could be contributing to your depression or anxiety. I often explain it like this: You wouldn’t expect someone who is high on drugs to be capable of acting perfectly sober. Having a hormone imbalance feels like being on a drug you can’t stop taking. It’s very difficult to fight the effects of excess or insufficient hormones in your system. Please seek medical help for this.

I hope my story will be informative and encouraging to those who read it. If you or someone you know is struggling with PCOS, there are some great resources and support groups online. Here are just a few:

PCOS Diva

PCOS Challenge

For infertility:

RESOLVE The National Infertility Association

Hannah’s Prayer Ministries

 

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4 thoughts on “Life with Polycystic Ovary Syndrome

  1. Ah, dearest Joy, thank you for sharing! I am sure there are lots of young and older women are probably suffering with the same thing.
    Please take care, my love and tons of hugs to the boys.
    Ginny

  2. Good for you Joy in sharing this. So glad you were persistent to work through. Being transparent is not easy. Love you for it,

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