Hi Leya

Things must be pretty tough for you at the moment.  All I can say is that it will get better. You will learn a lot from this message board and there is another message board also, but that one caters more for adults with cah or locah (late onset congenital adrenal hyperplasia).  Have you used that board yet?  A lot of adults that have been diagnosed later use that board and may be better able to empathize with you and help you with any questions that you may have.  You can glean a lot from this board too.  Basically in theory, if they do regular blood tests, they will be able to fine tune the meds more to your needs.  That way you should not suffer too many of the side effects.  That is why you need to have plenty of checks at the beginning, as everyone has CAH to different degrees and severities and your doctors will now need to get you adjusted.  You do need the cortisol and I am sure as you educate yourself and others advise you that, you will feel more comfrotable with the meds.  Initially you may have side effects and weight gain as they need to determine exactly the amount of cortisol that you need to replace  the deficiency that is occuring.  So persevere with them and make sure that you keep taking your meds and report any side effects etc as that can help them to determine if you are on too high a dose.  It may take some time but it will be worth it, as you will see most things come right eventually such as menstrual irregularity and any other symptoms that may have cropped up because of the excess androgens.  They will eventually settle down.  Do a search for LOCAH and you will find the other adult message board.  There are many sites you can go to to learn about CAH. 

If you need any more advice or don't understand anything then you can e mail me direct.  Hope that this helps a little.

 

Julie