“You have PCOS. You will never be able to have children; not without a lot of help, anyway.”

“There is no cure. We just treat symptoms.”

“Your high blood pressure, the weight, all the symptoms are from the progression of your disease. Here is a new blood pressure medication.”

“I don’t have anything else to give you, so you’ll have to try not to let the pill touch your tongue if you can’t stand the taste.”

“You need to have a baby. That always makes things better.”

Uh….Ok….

“I’m not saying you should try to get pregnant tomorrow. I’m just trying to illustrate how little I have to offer you.”

Thanks.
For nothing.

My name is Kelly, and I have PCOS. Like most of us with this disease, I was misdiagnosed from the first day, from the time I was twelve and had missed my second period by six months until the time I was twenty-five and was having hot flashes and mood swings so bad that I felt like two different people.

I had spent my whole life up to that point watching the weight gleefully pile itself around my middle and listening to one parent or the other remark about how round I was getting and trying every diet they encouraged. All without success, of course.

I suffered with the worst case of acne I had ever seen (at least in my self absorbed adolescent life), and I learned quickly to keep my head down because I was too young for make up and too ashamed to be seen. My parents wished they could send be to a dermatologist for professional help, but we didn’t have insurance, so…well…there you go.

I became more and more withdrawn, more and more irritable, and then I finally succumbed to depression. My parents tried everything they knew to do to try to make me happy, and I really appreciated their efforts; I did.  But it didn’t help. I tried to hide it from them, but you know how parents are. They knew everything, felt bad, and I felt even worse. I wish we had known then that it wasn’t anyone’s fault and most certainly not theirs.  I wish we had known that I was being held hostage by my own body.

Deep down in my heart, I knew. I knew something was wrong. But after doctor after doctor told me I was fine, shrugged their shoulders at every normal lab level and implied that I wasn’t being entirely truthful about how much I was eating and exercising, I stopped going. How many times was I supposed to go to the doctor and have them tell me nothing was wrong with me?

That is how I went on for thirteen years. Developing every symptom in the book and just dealing with them because what else was there to do, until I felt the first hair on my neck.

Funny. I already mentioned I was feeling like two separate people: the nice girl everyone saw on the surface and the witch that only I lived with 24/7, but living with the two me’s didn’t bother me as much as finding that hair did. Hot flashes? I could deal. Mood swings? Bring ’em on. Hair on my neck? Not to be tolerated.

I marched into my gyno’s office, demanded she fix me, and she proceeded to rattle off every symptom I had ever had before she told me. “You have PCOS.”

In retrospect, I think that I was so relieved to know that there was actually a reason for everyting I was feeling that I didn’t do as much research as I should have. I figured that since someone finally could tell me what was wrong with me, that they must know how to “fix” it. There wasn’t a cure, but they would make everything go away, and I would be normal.  Little did I know that even with three knowledgeable doctors on my case, the only thing they could do for me was give me more pills that created as many problems for me as they were supposed to be fixing.

Eight years later, I seemed to have as few answers as I ever did. That point was driven home quite clearly about a year ago when I had my first appointment with my new endocrinologist (since I had just moved back to this area eight months before). But before I get to that, I have to go back about six years.

Six years ago, I tipped that scales at just over 240 pounds. At five feet, one inch tall…yeah. I don’t have to tell you that wasn’t cute. Not at all. I decided that enough was enough; I had tried all of my life to do that weight loss thing on my own, and I was steadily gaining. Even the Metformin that was basically supposed to fix everything wasn’t working.

I was deeply ashamed of how I looked, felt constantly judged for every bite of food (healthy or not) that I put into my mouth, and on top of that, my health was in serious jeopardy. To quote my mother, “Desperate times call for desperate measures.” I had LapBand surgery, and in addition to the Metformin, I lost about sixty-five pounds.

With only forty pounds left to go, I could see the light at the end of the tunnel. Then the band sprung a leak, and it was a year and a half before I could get insurance that was good enough to cover the revision and the care that would come after.  I gained most of the weight back before I could get the band fixed.

That was about a year ago (yay!), but one of the instructions I was given is that I can’t take any pills bigger than a aspirin. That posed an immediate problem. Since I could never tolerate the regular metformin, I was put on extended release tablets, and those are bigger than an aspirin and can’t be cut in half. My bariatric surgeon wouldn’t change his recommendation, and my primary doctor opted to have me stop taking it all together until I had my endocrinology appointment.

And that fateful appointment ended with the same answer I have always gotten: “I don’t have anything else, so unless you want to try the regular Metformin again, I guess we just won’t have you take it. You are going to be losing weight now anyway, and that’s what is really going to help you.”

I wanted to scream at her. I wanted to scream that I knew losing weight would help, but I couldn’t lose weight without the Metformin, so what did she want me to do? But I didn’t. I just said, “If that’s my only option, I guess that’s what I’m going to have to do.”

As I was leaving her office, upset and nearly in tears, it finally hit me.  The doctors couldn’t help me. I guessed I was going to have to help myself; I was going to have to fight this a different way.  I had spent too much of my life being defined by the effects of this disease, had spent too much of my life “hating” the beautiful, thin girls all the guys love while they pass me by. I was going to choose not to be a victim anymore, even if it was in my own mind.

Especially if it was in my own mind.

But I know me. I know that at the first sign that my best intentions and my well organized plans aren’t going as I hope, I get discouraged and give it all up. Decide it isn’t worth trying because nothing makes a difference anyway. I knew that if I was going to fight, everyday was going to be a struggle, and that I was going to need all the help I could get.

So I took to the internet.  If I was going to find another way to do this, online would be the place to find it, and boy did I.  I learned so much by taking that first step and finding my own arsenal of information with which to fight.  I found so many places where other woman were living my life and not only surviving, they were thriving.

One website in particular truly spoke to me.  A website where I was encouraged to “be a diva”.  A website whose founder, Amy, suggested (if not in word, in attitude) that PCOS could be a blessing in disguise.

PCOS a blessing?  Seriously?  There was not one blessing I could count from having it, and I had had enough time to find an upside if there was one.  But, as I continued to read, Amy’s thought process took hold of me: whether or not PCOS was a blessing was in my own mind.

It was simple, really.  If I wanted to see it as a curse, it would be, and everything about my life that was associated with it would forever bring me down.  But, if I chose, instead, to see the positive things in my life instead of dwelling on the one that I couldn’t change, if I chose to look for the positive aspects that came from having to deal with this, my life could be as beautiful and hopeful– as truly blessed as it is meant to be.

Amy and her PCOS Diva website were a turning point in my life.  With her tips and suggestions, I’ve lost over fifty pounds, and I’m feeling better than I ever have.  I don’t always escape without self doubt and a warped sense of self-worth and image, but she is right: chosing to see the positive has made me a much happier person, and with God’s help, I am better able to fight this fight.

But again, I know me.  When things get hard and I suffer a few set backs, I forget how much I have to live and be thankful for. So this is why I am starting this blog: to help me remember how far I’ve come and what is really important on my journey through this world.

Here’s to a blessed and beautiful life!

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