NICIAW - PCOS

This is from Dawn.  She has polycystic ovarian syndrome (also known as PCOS). 

In 1992 I had a period that lasted for 17 days. My mom, being concerned, took me in for my first ever "girly" doctor appointment. After the doctor examined me and asked me a few questions, he announced to my mom that I was still a virgin.. Oh, and that my body was producing a little too much testosterone. No big deal, he said and put me on birth control pills to help regulate my cycle.

I stayed on the pills until after college, but found as I got older that the pills were causing some emotional side effects that I didn't like. I figured I'd take my chances with the random cycles. Sometimes I'd go 6 or 7 months without a period then have it for a month straight with awful cramps. Since I never know when my period might come, or how heavy it might be, I learned to always be ready. I'd mention it from time to time to various doctors, even mentioning something that I'd heard of on a tv show called polycystic ovarian syndrome, but none of them seemed concerned.

Last winter I went in to the ER with the worst cramping and heaviest flow I had ever experienced. After a day of tests to make sure I wasn't having a miscarriage, the doctor came in and said, "Well, the bleeding is probably just your period... Oh, and your diabetic." And then he left. The nurse set me up with a follow up appointment for two weeks later and sent me home. 

That evening I stood in the grocery store for an hour, trying to figure out what a diabetic eats, I ended up crying in the middle of the store and leaving with out even getting anything. At the follow up appointment the intern ran a test that finally confirmed what I had suspected, I had a metabolic disease known as PCOS.

Since then I've learned what foods work for me and how to deal with my illness through diet and exercise along with some oral meds. I now read every label before I put anything in my mouth, check my sugars several times a day and carry pads with me all the time, just in case. I am also working on losing weight ( a exponentially more difficult task for those with PCOS) in order to manage the symptoms of this disease.

Most people assume that I must eat a lot and that is why I am overweight when in reality I probably take in fewer calories than most. (About 1500 a day) But my body can't process the glucose efficiently so it stores excess as fat. Because glucose is the body's fuel, and because my size has caused some issues with apnea, I am also tired most of the time.

One thing that people say that often gets under my skin is: "Should you be eating that/You can't have that!" People might be surprised to know that diabetics can eat anything they want. If I want a cookie, I have a cookie, but it may mean cutting out that baked potato or yummy slice of bread. I have a carb "budget" and I have to choose each day how to spend it with out going over.

Now that I am married, people also ask about children, sometimes even the most innocent question can be very hurtful to someone suffering from PCOS. Because of the cysts in my ovaries, becoming pregnant is a very difficult, if not impossible task. Once pregnant, the diabetic is high risk and carefully monitored. I would love to have a family, it is a heart's desire, but there is a lot of health stuff to deal with first.

I get frustrated with the commercials on TV that make diabetes an old person's disease, its not. Or that make it look like your are on the verge of death, with proper care, diabetes is manageable. Yes it is a daily part of my life, yes I've had to make some adjustments, and yes the PCOS has made each day a little more challenging, but when I am tired, I will rest, when I am hungry, I will eat, and while I am alive, I will live! 

Thank you for taking time to read this essay. My illness may be invisible, but because you read this, I am not!