Sunday, March 17, 2013

Recap: My Journey With PCOS

Hi my name is Casey, I am 29 years old. My weight has been an issue since I was 14. I would say that my ”normal” healthy weight is about 140, but I have been as low as 125 and as high as 283. I am 5’5” but very muscular. To maintain that weight I was constantly on a diet, exercised daily, was a cheerleader and a powerlifter. Every other year or so I would put on about 30-50 lbs without eating badly and then I would bust my butt and loose it. I must have had my thyroid checked half a dozen times by different doctors since the age of 16, only to be told I was perfectly healthy. When I turned 20 my aunt noticed that my hair was thinning. I went to a dermatologist who said it was because I had lost so much weight. But I just had this feeling that something was wrong with my body. I can’t explain it, I just knew. After I gained the weight back I went and saw an endocrinologist who did a lot of blood work and said basically that nothing was wrong with me, that I was 40 lbs overweight and to go on a diet. So I tried South Beach and lost 50 lbs. Over the next few years my hair continued to fall out, my periods became lighter and lighter, I had hair growth on my face and chest, I was constantly depressed, I was lethargic, and my weight got harder and harder to control. Finally at the age of 25 my GP sent me to a reproductive endocrinologist after a test showed that my estrogen level was a 9. Yes literally worse than a 90 year old woman. I will never forget that conversation, when she said to me that something was wrong with my reproductive system, that I probably hadn’t ovulated in years -if at all, and that I would not be able to have a child without medical help. I remember how matter of fact she spoke as if she were telling me I had a cold. I didn’t react, I was kind of in shock, until I got to the elevator of the building and I just broke down in tears. At the RE I was given an ultra sound which showed the ”pearls” and I was also given a blood glucose test which showed I was mildly insulin resistant but not yet diabetic. I was put on Yaz and told to come back when I was ready to have a baby. I think RE’s are too concerned with making money on fertility treatments, then to take the time to help a person with an endocrine disorder. After about a year and no improvement in my symptoms I went back to my GP and told her I wanted help and I was not satisfied with the medical care I had been given so far. She put me on metformin and spironolactone. And I use Rogaine to this day. I wish I could say that finding this diagnosis made me change my life, but instead I managed to put on 80 lbs in one year. Last year after being put on a drug Resperidon for psychological reasons I gained 50 lbs in 3 months. And I have the stretch marks to prove it! My weight hit an all time high of 283 lbs September of 2012. I hit an all time low with my depression and was virtually bed ridden sleeping up to 18 hours a day. I lost my job of 5 years for running out of FMLA. I ended up in a treatment center for two months for outpatient care to try and get a grip on my depression, but it didn't work. I did however make a positive step towards my health and gave up drinking. Shortly after I stopped drinking I was diagnosed with a chronic pain disease called Interstitial Cystitis.  It is a chronic pain disease of the bladder. My focus turned to dealing with IC and I really let my weight soar as I struggled to find foods that I could actually eat. With IC you can’t eat anything acidic as it erodes the already diseased lining of the bladder and causes bleeding ulcers and lesions. I ended up bed ridden for about 5 months. Ironically I lost 30 lbs during my bed ridden depression, but I don’t recommend that diet as it is misery. After I lost the 30 lbs I have had 2 straight months of an actual period, which is just another reminder how important weight loss is for PCOS.  I have since had appointments with my GP and my Psychiatrist who switched my anti depressants around and added Adderall. I don’t recommend Adderall, but in some cases of medication resistant major depression it can be one of the only things to wake you up. So here I am today. I have made a conscious decision that I have to put myself first and stop trying to fix everyone’s problems around me. It’s like on an air plane where in an emergency you have to put on your air mask first or you’ll be passed out and no help to others. I scoured the internet for hours and was extremely happy to find this web site.  I’ve done countless hours of research over the years about PCOS, even ordering huge medical guidebooks. However, I was surprised how Tarryn so easily explained everything and I love her accent. My husband and I plan on starting the PCOS diet plan next week. I am hoping to build on my 30 lb weight loss momentum and the ultimate goal is to lose another 100 lbs, which would put me at 150 and right within the healthy weight range for my height. I also hope to start trying for a baby in about 2 years once I have reached my health goals. If I could say one thing about my almost 10 year search for what was wrong with me, it is that I wish those doctors and endocrinologists I went to would have spent a little more time and dug a little deeper and found out that I had PCOS so I could have changed my lifestyle then and never ended up at 283 lbs and lost all the hair I did. We as women have to listen to our bodies. I knew something was wrong with me since I was a teen ager. We have to be our own advocates. Trust me, there isn’t a doctor out there who can cure you, because there is no cure. So it is all up to us, each and every one of us, to fight this battle daily and someday win our personal wars with PCOS.