Hello to all,

            I am new to this site but am very thankful that I found it.  I am in desperate need of guidance.  Here is my story…I hope you can help me:

I am 33 years old and was diagnosed with CAH one year ago.  I actually have had it since I was a baby but no one has ever tested me until last year.  I have a midline case and had symptoms since I was a baby but each symptom was passed off as something else or was ignored altogether.  I have no issue with the genitals, every thing is normal.  I did develop huge thigh muscles as a toddler which I still have to this day.  I look like a body builder (just my thighs).  I started developing pubic hair at age seven.  I have had insomnia since I can remember and I am always tired during the day.  I love to sleep but I just have trouble getting to sleep.  I am a night owl.  The acne started at about age 12 as did my period.  The facial hair began shortly after that and is very bad today.  I have ovarian cysts and they started in my teens…had surgery for a rupture at 19.  I am 5’ 4” tall which isn’t too bad however my mom and my sister are 5’ 10” and my dad and brothers are just over 6’.  I am the “short” one in the family.  I did not have issues having children.  I have three and miscarried one.  I always got pregnant easily (Thank you God!).  I now have endometriosis and have had one surgery for that last year.  That is what actually caused me to go to an endocrinologist.  I had complained for years to doctors about the facial hair and all said it was hereditary.  One year ago the endocrinologist did testing that came back that I had CAH (21-hydroxylase).  He said my labs were off the charts so he put me on 0.25 Dexamethasone once a day at bedtime.  He said I was lucky…that I had dodged many “bullets”.  I have some symptoms but not others.  He said that in a few months the acne and facial hair would begin to go away.  A few months passed with no change, except my labs were in normal range.  He said that was probably the first time in my life that they have ever been normal.  I complained again about the facial hair and he said it could take 6 months.  6 months came and no change. I again complained and he said it could take a year….every time he would change the timeline.  He took me off the dex and put me on 5mg of Prednisone once a day at bedtime.  Here I am at the one year mark and there has been no change in the facial hair or acne, not even a little.  I am crushed!  I stopped going to this doctor in December (I know I should not be without an endo doc).  I am looking for a new doctor because this one acts like CAH is no big deal.  He told me nothing about it.  Everything I know I read on my own.  I only know from him that it is the 21-hydroxlase kind.  I know nothing else.  I don’t even know what to ask.  He never mentioned adrenal crisis and about 6 months into treatment I had surgery to remove my gall bladder.  Thank God nothing happened to me!  I did it without stress dosing.  I am very confused.  Is CAH really that big of a deal?  I lived for 32 years without meds…do I really need them now?  I was taking them in hopes of getting rid of acne and hair and that is not working.   Will the hair ever stop!!???  Some days I just cry when I look at myself.  I spend an hour EVERY morning pulling out the hair.  It rules my life.  For example, I will not go camping with my family because I will not be able to take care of the hair in the morning.  And if I don’t pull it every morning (sometimes more) it is out of control.  So I miss out and will not go with them L.  I feel so ashamed by it.  I NEVER talk about it with anyone, not even my husband.  The first time I actually “admitted” having the problem to a doctor I cried.  To even write about it here is a huge deal for me.  I could live with the acne but the facial hair has broken me down.  Is there ANY hope for me?  I feel like a freak.  Will the meds stop it from growing?  Does my endo doc know what he is talking about?  I see a nutritionist because I am trying to lose about 20 pounds left from my third child…three years ago.  She said the Prednisone will cause me to keep the weight on.  That bums me out.  Is that true?  If so and if the meds will not stop the hair why take them?  My general doctor told me that these meds will cause me to get brittle bones later on…is that true?  I feel lost and sometime frightened.  I feel no one knows how I feel (except all of you).  I need a new doctor and don’t know how to find one who really knows about CAH.  But worst of all of just want a normal face.  I pray so hard for anything to come along to help me and have it stop.  My spirits are low and I feel helpless.  I feel blessed that I found this site.  I have read many of the postings and everyone is so supportive.  I really need someone who understands.  Thank you so much for reading my posting even though it is long.  I am open to all that you would like to share with me.  I am certain I will be posting many more questions in the future since I feel like I am wondering aimlessly.   I am so confused!