Michelle,

My husband also has CAH, and we have been dealing with a similar problem.  A little over a year ago he lost all interest in sex.  He had seen his endo a few months before and everything was normal then.  Then we moved, I started a new job, we changed insurance, and he had to find a new doctor, so he went a year between appointments with an endo.  His CAH had been relatively well managed for most of his life, so he didn’t think anything of it. 

Last March, he found a new endo and had all sorts of tests done.  Well, the test results definitely explained why he had lost his sex drive!  His levels were way off!  His ACTH and 17-OHP levels were astronomical, as were the androgen levels.  His testosterone was very low, as was his sperm count.  He was being undertreated, and a CT scan of his adrenals showed that he had been for a while. 

Here’s how his endo explained how being undertreated would affect his sex drive and fertility:

The pituitary gland sensed that he was not getting enough cortisol, so it started producing more ACTH to try to stimulate the adrenal glands to produce more cortisol.  Since his adrenals can’t make cortisol, they instead made more adrenal androgens.  The pituitary then sensed the increase in adrenal androgens and as a result decreased the release of the hormone that stimulates the testicles to make testosterone.  Since adrenal androgens are weaker than testosterone, this caused his sex drive to decrease.    As a result of the decreased testosterone, his sperm count decreased too.

His endo then increased his prednisone from 5 mg a day to 7.5 mg a day.  There was some improvement in his levels (his ACTH was a little more than half of what it was in March and his testosterone was almost in the low-normal range), but not enough, so his doctor has now switched him over to dexamethasone, 0.5 mg a day.  He is due to have more tests done next week, so we’ll see what his levels are after being on dex for 6 weeks.  If they’re still not closer to normal, his dex dosage will have to be increased.  But I’ve noticed a definite increase in his sex drive these last few weeks, so hopefully things are getting back to normal!  :)

I would suggest that your husband see his endo as soon as possible!  Undertreatment is not the only possible reason for your husband’s decreased sex drive, but it’s definitely one to consider.  Depression is another, which we have also dealt with!  Feel free to email me if you have questions or want to talk.

Melissa