Kacie, I too never got a period and was diagnosed with CAH when I was 19. I did suffer with daily headaches, anxiety, acne, loss of energy, short stature, mega hairiness, etc.before diagnosis. I was put on birth control pills at age 16 to get my periods started and I did have them when on the pill - but when I stopped no periods again. I started taking Dexamethasone at age 19 and finally did get natural periods for the first time. I had my daughter at age 27. I too was told to wear a medical bracelet because in effect taking steroids for a while will put your adrenals "to sleep" and they won’t work on their own anymore - hence if you don’t take your meds you will be in danger of an adrenal crisis. (Had that happen twice to me) You don’t want to go there..... believe me.

Taking meds does help a lot though.... for me the hairiness (hirsutism) went away, as did the acne, headaches, anxiety, loss of energy. Can’t change my height though - lol. I do a lot of hiking now and regularly am able to hike 10 miles or so now. (that NEVER would have happened before meds) I’m 44 yrs old now.

Feel free to e-mail me if you’d like.

Susan A.