PCOS -- Anyone out there?!

When I was first diagnosed with Polycystic Ovarian Syndrome, I felt very alone and isolated. I'd never heard of PCOS before and had to learn about it mostly through the good ol' internet. I should mention that my doctor didn't even think to diagnose me! My Dad, a Family Doctor, mentioned that it was something I should check into. Thank GOD for this. If he hadn't said something to me, who knows how long it would have taken me to figure it out. My doctor ran some tests, determined that I didn't have PCOS, and that was that. Luckily, J and I made an appointment with a Reproductive Endocrinologist to get a second opinion. She did a more thorough check, including an ultrasound, and determined that there was no question: I definitely had it. This was frustrating for me, because PCOS is something that girls acquire around puberty, so why had no one thought to check into this earlier? Are doctors properly educated about this condition? Had I just been seeing the wrong doctor? Should my doctor have been asking better questions earlier on? I wonder how many women out there suffer from PCOS and don't even know it.

Even though about 5% of women have PCOS, I've only met one or two of them. I feel like because some of the symptoms of PCOS are less than flattering (and somewhat embarrassing), no one talks about it. I've searched high and low for some sort of PCOS support group nearby and have found nothing. I think it would be very beneficial for women suffering from PCOS to be able to meet with others for the purpose of education and comradery. Why does this not seem to exist?

I caught a bit of NPR's "Tell Me More" on the way home today. Michel Martin was interviewing a man and a woman who have both (separately) gone through the heartbreaking reality of stillbirth. They both noted that their doctors had not prepared them for this possibility, the hospital staff didn't seem to know what to do with them or how to hep them afterwards, and their friends and family had no idea what to say to them. So, most of what they received from all parties was silence. Now, I'm definitely not equating infertility with the tragedy of stillbirth or miscarriage, but I think they all carry a similar problem. I'm still trying to figure out why it is so taboo to discuss any of these things in our country. I, myself, have been fairly private about J and my struggles with infertility, and yet I yearn for others who have gone through similar journeys. How can we retain the amount of privacy that we need, but at the same time find other people like us to talk to? I guess the jury is still out on that one.