By: Barbara
Email: NessWorld@banet.net
Website: http://
Favorite1: http://www.pcosupport.org
Favorite2: http://www.americaninfertility.org
Date: 12 Jun 2000
Time: 17:49:08
Remote Name: slip-32-100-77-131.ny.us.prserv.net
Remember me? I was that tall ugly girl in your school that you laughed at on the playground. The one with braces, glasses and really bad acne. At age 9 I got my period. A little nothing. 14 months later I was lying on a plastic sheet on my bed with towels between my legs - so much blood. The local gyn said I was high strung and "probably masturbating too much." Nice. I was only 10. My family was less than enthused. I wasn't the perfect little princess they envisioned. I was tall, big boned and lanky. The gyn put me on tranquilizers. So I spent most of elementary school, jr & high school legally zoned out. I took sick days for the 3 days of intense bleeding I got once in a blue moon. I had few friends. Even adults looked sideways at me. 2 years of dermatology treatments ended the hideous acne. Finally at age 18 the doctor who delivered me saw me as a courtesy. He was only teaching now and elderly but one look and he said to my mother - "How long has she been like this?" I took a bus 3 hours to see him. He put me on Premarin and suddenly I got breasts, a waistline and felt normal. For a minute. A few months later in a high school locker room a group of my tormentors saw the male patterned hair I had all over my skinny 18 year old body. The beating probably lasted a few minutes but seemed like forever. Two teachers looked on and did nothing. I never told anyone till recently - I was too young. I was bruised from head to toe but nothing on my face so I hid it. My boyfriend's mom turned against me - the FREAK and made my life in a small town hell. Got to college and hooked up with a nice looking but abusive boyfriend there. One roommate moved out on me a few days after a heavy bleed. She was freaked out. I had to take her family to small claims for back rent. She told my mother I was a nut. Great! At age 22 I moved to NYC and started a professional acting career. My trusty razor at my side. I was finally told I had Stein Leventhal Syndrome and given BCPs. For while this helped tremendously. I was on Synthyroid for a year too. I got a tiny monthly period and felt good. In 1984 I started having severe tearing pains in my right side. By 1986 I was in surgery having a dermoid cyst taken off my right ovary the size of an orange. I got married in 1985 and after the 1986 surgery started on the infertility treadmill. I stopped occassionally but nothing seemed to work. In 1995 I got sick at a survival job (I was a paralegal part time to support my acting career) and in 3 months was on permanent disability along with 10 others from my office with CFIDS/Fibromyalgia from Sick Building exposure. All of the sick people had some autoimmune problem but I never put it together with my PCOS (which left me at risk) for a few years. I went into remission in 1997 and as a last effort had an IVF done. I got lucky and have fraternal twin girls. But I got severe PPD after they were born, couldn't breastfeed from low Prolactin levels and suddenly gained over 100lbs and was not really eating more than one small meal a day. Two more doctors recommended a vacation and Weight Watchers when I got good and fed up. As fate would have it one of the girls in my childcare class had PCOS and told me about PCOSupport. I got online and was recommended a better doctor (thank you LISA!!) who took one look at me and told me I should get my picture put on the front of a book about PCOS. Now I am low-carbing and taking Metformin and slowly losing weight. I also do a lot of advocacy for CFIDS/Fibromyalgia. My self esteem is very strong because of my experiences but I wouldn't wish this on my daughters or anyone else. I hope to get more involved. Speak out, educate more doctors. I am personally very disappointed in many doctors who poo-poo so many medical conditions. And I can almost tell a woman with PCOS from across a room now. Educate yourself, your friends, your children. If doctors had been more on the ball when I was younger I could have been spared years of comments, hate and pain. This is not a new illness and has been ignored for too long. And my new gripe isthat HypoGlycemic "attacks" mimic panic attacks. Yet doctors pour on the tranquilizers rather than checking the sugar problems inherent with PCOS. Sounds too familiar to me. Hugs to all my Cysters.
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