On Wednesday, July 29, 2015, I found out I have a genetic disease.
As soon as the doctor confirmed what we had suspected for several months, I couldn’t help but feel a rush of sadness fill my eyes with tears. I tried to hold it back because I didn’t want to show that I was weak in that moment. I wanted to stay strong and focus on what the doctor was telling me we could do about it; the treatment.
The genetic disease is incurable. There’s nothing anyone can do to rid the disease from my body. However, it is treatable.
My doctor gave me an info sheet highlighting the important terms and definitions surrounding the disease along with some helpful tips on how to manage it.
You’re probably wondering what genetic disease I was diagnosed with. It’s nothing life threatening and most of the symptoms associated with it are pretty minor. They’re relatively easy to live with. But that doesn’t make it easier to swallow the news.
I am a cyster with Polycystic Ovarian Syndrome (PCOS). Without getting too technical, I will say that the requirements to be diagnosed with this genetic disease is three pronged. Because there is no official test for PCOS, one must meet the criteria of a minimum of two of the three prongs. I meet the criteria for all three.
Previously diagnosed symptoms
I have unknowingly lived with this disease my entire life. I have experienced previous symptoms that were shrugged off at the time such as spiking blood sugar levels, acne, weight gain, and irregular menstrual cycles. Now I know they’re all part of a bigger picture.
At first I felt a little disappointed that this had gone undetected for so long when I’ve been experiencing symptoms since I was 12. However, my doctor at the time put me on the birth control pill to suppress the symptoms I was having. More specifically, to clear my acne and regulate my period.
It wasn’t until I got married and decided to stop taking birth control that the symptoms came flooding back. That’s when I went to my doctor about my symptoms and that’s when the testing process started.
Living with a genetic disease
As I said, living with PCOS is not a death sentence and the symptoms are manageable. Since being diagnosed, I’ve focused my attention on learning as much as I can about the disease, following doctors orders as much as possible, taking the necessary medication, and doing everything I can to manage the symptoms.
I’ve completely changed my diet. I do my best not to consume any sugar (unless it’s naturally in food, obviously, like fruits). I do my best not to eat processed foods and only eat whole foods. I don’t eat white bread, instead I opt for multi grain or 100% whole wheat choices. I’m seeing a nutritionist regularly who is helping me eat a low carb, high fiber and protein diet, tailored for diabetics, and I’m working towards a low glycemic index diet which is supposed to help me lose weight and manage my symptoms. I’ve been working hard to implement more physical activity into my daily routine. I use my FitBit to try and reach 10,000 steps every day.
Goals for the future
I have already lost about 8 pounds since being diagnosed on July 29, 2015 and I plan to lose lots more. Because unexplained weight gain and difficulty losing weight loss is very common in women with PCOS, I consider this weight loss to be a huge accomplishment.
I still have a long way to go to get to where I want to be as a healthy cyster. In the meantime, I’d like to continue to write about my journey with PCOS in hopes that the emotions I feel, the obstacles I overcome, the setbacks I encounter, the things that I learn, may help my fellow cysters in their journey with PCOS.
I hope to start a new blog dedicated solely to my PCOS journey where women with PCOS can travel with me along my road to success. For those of you interested, care to share your ideas for a name for my PCOS journey blog?