Danielle,
I have a similar situation as you ... my first Endo said PCOS, my second Endo said 'Adrenal Disorder', and now my third Endo (The Adrenal Specialist) is saying that I have a rare type of problem that just doesn't fit into any categories, but shares the most symptoms with PCOS. He thinks PCOS is a 'garbage can diagnosis' though. His name is Dr. Richard Auchus and he is in Dallas, TX at the UT Southwestern Hospital. My first Endo was in Boston though, when I was going to school there. She has moved on to CT I think, but she was definitely in the PCOS camp.
I'm curious about your story though - do you have high DHEA-S? What other wacky hormone levels do you have? Thats what started my whole ordeal - high DHEA-S. My other major problem is that I had a severe estrogen deficiency (think pre-pubescent level, and I'm 20 years old). My second Endo was saying that I had a mild from of LOCAH, but I've done the 17OH test twice and its came back negative each time. I've also done a gazillion blood tests, urine tests, dex suppression tests, a pituitary MRI, an ultrasound, and an abdominal CT. Crazy to think I STILL don't have a solid diagnosis.
Currently I'm weaning off of Dex. and taking Yasmin and Spiro. Weaning off of Dex has been hard, I keep getting muscle/joint aches and mood swings. I'm so hoping that the 20 lbs I've gained will come off someday soon though
. I am scared about being completely off of Dex though, since it completely suppressed my Testost and DHEA-S levels so that my hair loss and acne/oily skin problems were almost gone.
Well I would be interested to hear about your story/path. It is comforting to know there is another person out there caught in this confusing Adrenal vs. Ovarian mess.
ive been on prednisolone (same as dex) for about 6 years now. I take mine for my late onset cah (adrenal gland problems).
