Here is a message I posted in The Polycistic Ovarian Syndrome Forum today. I thought I might as well post it here in case anyone is interested.
I'm Jacqui, I just found you. I contacted my kind chapter person via e-mail, tried to pay my $40.00 dues (it didn't work for some reason so I E-mailed the webmistress) and joined the mailing list. I've been reading transcripts and threads and am so grateful. Thank you so much for being here.
I thought I should introduce myself and check in with my story which of course sounds like everyone else's, it's sure good to find a home. I'm thirty-eight. I have one son who is eleven. I was recently diagnosed with PCOS and am IR. I have high levels of the male hormone whose name is escaping me, ack, testosterone? I also have ADD, also recently diagnosed so please to bear with my challenged communication skills. I have had acne all of my life. I am very overweight, (I hate the word obese, would rather be called fat, and have very low thyroid, Hashimoto's Syndrome. I also have Interstitial Cystitis and cystic breasts. (I'm just a cyst queen I guess, there just has to be some kind of link between all of this cystyness.)
My periods started getting really weird about six years ago, after I had been taking the dread phen/fen combination for two years! I wonder what role that may have played in all of this. I just remember flushing a lot, getting an incredible increase of acne, especially around the sides of my face by my ears and under my chin, which someone told me was considered hormonally related. My periods started becoming incredibly heavy, and would run one into another, then they'd go away for a month or two and then start running into each other again. Big baby that I was at the time I simply called my doctor and ignored the whole thing. Meanwhile I was putting on weight like crazy.
Weight wise I was thin and full of energy as a child and then when I hit puberty I started to put on weight and craved carbs and sweets and it's been one big weight gain/climb since then, with every diet and program tried along the way.
No one ever mentioned the possibility of PCOS to me, not any of my doctors, until one day I was shopping in Lane Bryant and a woman who worked there, out of the blue started telling me about how she had discovered she had it, then was put on Met/Glucophage and birth control pills, was very sick with side affects for a while, then got better and in the process lost eighty pounds, got rid of the cysts and went off the birth control pills but had to keep taking the Met. I remember thinking at the time, "Wow I wish I had that problem, then all of this would make sense and all I'd have to do is take a pill." Sigh. anyway i tucked that little bit of information away and didn't act on it until one day again by extreme chance I was giving a reference for a housekeeper I had once had, to a woman who happened to be a nutritionist, (Mary Donkersloot in Beverly Hills, I'm going to see her for the first time this Tuesday,) and we started chatting and when I told her how overweight I am she said, "Oh you poor thing, has anyone ever checked to see if you might be polycistic?" Well, that was it, two totally unrelated people had mentioned this to me so taking it as a sign I went to see the gynecologist and low and behold, da da da da, cysts on my ovaries.
My gynecologist said she thought I had PCOS and ran blood tests and told me she would put me on birth control pills. She never mentioned Met or any meds but gave me the name of the doctor who performed the gastro bypass on Carnie Wilson. When my tests came back with abnormal liver enzymes I had to go to my regular doctor. The next step involved my GP, who doesn't really believe in PCOS, (she's extremely conservative) taking more blood and sending me to a doctor for ultrasounds of my liver, gallbladder and breasts, (might as well get that mammogram done at the same time). I had a lovely moment of terror there when I saw my breast X-rays and there were big round dark circles, but luckily they turned out to be cysts. I don't remember why I had a big CAT Scan but we did that as well. After all of that and a glucose fasting test, my doctor reluctantly agreed that I might have PCOS, but that I definitely had IR, and put me on Glucophage at 500 mg once a day to start. i felt terrible for the first two days, didn't want to eat, mostly slept, and then after that I perked up and thought ,"Hey this is great, is this how normal people feel around food?" Sweets and carby things didn't hold the same appeal at all, and my appetite dropped.
After two weeks I went to see my doctor, who was thrilled at the outcome and we upped the Glucophage to 500 mg 2x per day. Here is where I've run into trouble. It's been over a week now and I haven;t bounced back like the last time. I am exhausted. I think I'm imagining that my hands and feet feel kind of swollen and numb. My sex drive has disappeared but whose wouldn't really with all of this going on. I'm exhausted all of the time. I want to sleep all day, and the slightest amount of physical exertion makes me weak and sweaty. Of course I'm making myself walk and as I mentioned before I'm going to see the nutritionist this week. I'm a vegetarian which further complicates things protein wise.
I'm adopted so I can't get too much info. from my birth family. I contacted my Mother but she is totally shut down, selfish and non cooperative. The most I could ferret out of her is that she too gained a lot of weight in her thirties that she hasn't been able to lose. I had a grandmother who had type 2 diabetes, so this supports the belief that this is an inherited condition, and my Birth Mother was unable to conceive for something like ten years after she had me in her early twenties. Then in her thirties she went on to have three more children.
Well, that's about it, my big long story. I'm not too good at brevity but I guess you've figured that out by now, heh. If you want to know anything more about me I keep an online journal in real time. I update it daily and sometimes several times a day. I'll probably include this there. You're welcome to come by and see. Thanks for reading this and I welcome any comments or suggestions and look forward to being able to return the support.
Big huge hopeful hugs,