Hi Cathy--
Sorry to hear about all the trouble you’ve been having. Hope you and the doc and figure it all out. It certainly sounds as if you are suffering from hyperandrogenism, tho.
I would also like to drop a note about PCOS cause a lot of people seem to have the same misconception. Your ovaries don’t just wake up one day and decide that they are going to become polycystic. *Something* causes your ovaries to become polycystic. So while your doc may come up with a PCOS diagnosis there has to be an underlying reason *why* PCOS is occurring. That’s usually the hardest thing to determine because many hormonal imbalances can affect the ovary, either directly or indirectly.
For example, hyperandrogenism (which can occur for many reasons, LOCAH being one of them) is one of the defining characteristics of PCOS. That’s why lots of people with LOCAH are initially diagnosed with PCOS. However, with CAH, the hyperandrogenism is caused by increased 17-OHP levels (all that excess 17-OHP being converted to androgen of course) which can be decreased by taking cortisol. This in turn, may reverse the PCOS (and I say may because taking steriods causes a whole other boat of potential PCOS causing issues!)
I just thought I’d point this out because a lot of people seem to have the misconception that getting a PCOS diagnosis is the end all be all. However, once you get a PCOS diagnosis your next question to the doc should be "Well, what the heck is causing it?!"
I have tons of papers/helpful websites if anyone would like any more info. Good luck!
MarthaF