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My story of PCOSFrom: anonymous (anonymous@obgyn.net)Sun, 3 Dec 2000 17:07:25 -0600 (CST)
I've suffered with this syndrome for many years now and thought I would tell you my history of it. I would love to hear your stories of it also... My mother was not into taking us kids to the doctors, unless we had a broken bone or needed stitches. I remember having bad staph infections (boils) on my inner thighs at the age of 5 and 6. Probably had something to do with the fact that I had diabetes then, undiagnosed. When I was about 8 or 9, I developed secondary sex characteristics, underarm and pubic hair. By the time I was 12, I begged my mother to allow me to shave my legs, but she refused. My mother's friends tried to get her to change her mind for me, because they could see how much leg hair I had even. I have no idea genetically where this syndrome came from, as no one in my family has it that we know of. As a teen, I was so ashamed of my body, due to the excessive hair growth, etc. Unfortunately, my mother had no knowledge of it and just made me feel worse about myself, as if it were my fault these things were happening. She was just ignorant about medical aspects and didn't even think to take me to the doctors. At the age of 17, I finally went to the doctors on my own. I hadn't gotten my period yet at all, and this was about 1975-76. They did some tests, checking for Cushing's, etc. had the full hormone workup, but the only thing that came up at the time was diabetes. First I tried just watching the diet, and that didn't work. Then I tried the oral hypoglycemics, and they didn't work to control the BS. Meanwhile, I still hadn't gotten my period. I went several years trying to deal with the diabetes and had several doctors tell me that I was lying about my diet, etc. I even had one GYN tell me that the reason why I didn't have my period was because I was fat. I never was morbidly obese, but I was overweight. My growth in height had stopped when I was about 9 or 10, so I was short (5'0") and weighed about 185. I went a few years bouncing back and forth between doctors, GYN's and internists. Finally after about 8 years, at age 26, I started on insulin. It was like night and day health wise. I was in much better control, felt better and actually started getting my periods. Another symptom that I developed big time was the loss of scalp hair. I literally became bald in the areas that men get bald. I can't tell you how poorly I felt of myself at this stage in my life. I remember being on vacation and having a group of boys walk by me while I was on the pay phone in the lobby of the hotel. They yelled out to me, "Hey Mister!! Are you a mister or a girl?" They kept it up and laughed the whole time. I felt like running away right there. I tried every trick in the book to make my hair look fuller, but it really didn't work. I never had a relationship with a man, mainly because I wouldn't allow myself to, being so ashamed of my body, etc. Hence, I never had the chance to attempt to get pregnant. The Endo's and GYN's all said that if there ever was a time I wanted to get pregnant, they would help me by going on fertility drugs, but that was the only time they would help me with medications. I'd just have to live with it. As for the hair growth, I had it all over, except my mid back area and inner arms. I'm fair skinned and the hair was black, so it was very noticable. Most of the hair follicles had two hairs growing out of them, and the underarm hair had 3-4 hairs per follicle. In Jr. High I was given the nickname of "sideburn lady", about age 13. By age 14, I was shaving and the growth continued on until I had a full beard. I never had a "bikini" area, as the area was from my knees to my chest. Needless to say, I got to know every hair removal product that was on the market. When I was 31, I finally spent loads of money and got one of those hair replacement systems. It made me feel a little better about myself. I also underwent about 2 years worth of electrolysis for a full beard that I had. It was about this time in my life that PCOS started to be an actual "syndrome" and the docs were just learning about it. Another doc I saw did somemore hormone tests and they came out typically PCOS. Again, no treatment unless I wanted to get pregnant. They didn't even know the correlation with glucose/insulin then either. Another 10 years have gone by now and I'm presently 42. I finally have become comfortable with myself, so much that I have a committed relationship with a man. I have lost some weight and now weigh about 155 (varies by 5 lbs. up and down depending on water weight, etc), and that seems to have helped quite a bit. The hair growth for some reason has slowed up quite a bit. It's actually finer and blondish on my belly now. I still have my problem areas though (back of my thighs, inner thighs, chest and lower back). My abscess problem that I had lasted until I started the insulin, but I have major scars on my inner thighs and underarms from them. I still get little abscesses in the groin area, but nothing like it had been. I still haven't had anymore hair loss from my head, but it hasn't grown back either. I still have the hair replacement system. My last ultrasound about a week ago showed my ovaries were clear for now. I've had a period every month since the age of 26 with only a few months out of sync, but nothing major. Unfortunately, at the age of 42 and being diabetic, along with a heart problem now, I am not going to try to conceieve. Of course, if it happens naturally, I will attempt to follow it through. It would be a miracle to me that's for sure. I won't go through to the GYN's/Endo though to get Clomid, etc. to purposely get pregnant at this stage in my life. I'm not quite sure why things have settled down with the symptoms of the PCOS. Could have been the weight loss I had or better control with my blood sugars. I noticed it slowing down when I started to take Rezulin, which was supposed to help PCOS also. Since that has gone off the market, I'm now on Advantia. That's supposed to help with ovulation also, so pregnancy could be an option for me in the future I guess. I'm sure my PCOS, if rated back then in today's standards, would be considered severe. I often think how things might have been different if I had some of the treatments of today back then. I look forward to hearing your stories of how you've dealt with PCOS, your symptoms, etc. Meanwhile, take care all.
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