Thanks for your responses guys, the world of PCO/S really is a big diagnostic mess isn't it?!! It's great to find a group of people going through similar things.

Mrs P, my diagnosis was a bit long winded. Basically didn't have periods as a teenager (1 a year at the most) then went on the pill for years. Went of the pill for a year and had no AF. The GP did blood tests and was completely puzzled by the low hormones. Then she sent me for an ultrasound, I apparently have around 30 cysts on each ovary, not sure if that is a lot or average for PCOS. I was originally told I had PCO, then went to a specialist who looked at me and also said there was no way I had PCOS, then did more blood tests and said that actually I did!! I think as Butterfly-warrior said you technically can have PCOS with or without polycystic ovaries - further evidence of what a confused syndrome it is!!! Can I ask if you have tried Clomid or similar?

It sounds like we all have really different responses to the various treatments. Big good luck to everyone that we find the one that works for us!!