Sorry to hear of your difficulties with treatment over the years.
Regarding the flank pain, I can only say that I experienced what I believed to be adrenal pain when I went off my CAH treatment for awhile. The pain finally ceased, almost as soon as I was back on corticosteroids. It was a horrible, wearing down, persistent kind of pain on both sides.
Of course doctors only looked at the kidneys and seemed incapable of thinking it could be anything else. Back then I wasn't as assertive as I would be now; that is to encourage them to check the adrenal glands.
However your problem seems to be the reverse of mine - yours has started since you commenced on corticosteroids. I guess once kidney involvement is excluded then you could ask for adrenal imaging/scanning and see if there is something else there.
If you have been mismanaged for years then you could have adrenal incidentalomas which are growths in the adrenal gland. They are quite common in people with untreated/undertreated CAH. If they are large sometimes they need to be removed but adequate corticosteroid treatment in a CAH person usually shrinks them.
