I’m glad that you didn’t find my other three posts to goofy : ) The suggestions that I offered were actually things that I did to help myself with CAH and other conditions.

     I don’t assume anything about the surgeries that are done and one would hope that parents would get the best for the time period that they are in because I know that mine did.

     I guess some parents will never get this and that is what it is but it is wonderful and assumed that the surgeon will be the best one : ) where the bigger issue is that no matter how good the surgery is that because of the actually condition of CAH the excessive androgens that go everywhere besides making the external genitals ambiguous ......ummmm one might and I’m not saying this will be your daughter but have confidence issues with being female blahhhh don’t konw if I’m explaining that right but it is the best that I can do it. This has nothing to do with playing with trucks or anything that those people withPHd’s study  but more like you look in the mirror and you look good but don’t believe yourself or just resent CAH.

 

     This is stuff that you may or may not ever have to cross until way later. It’s so much more than surgery better now and that’s a wrap - logic says surgery should be better and mine was good for the time period but that doesn’t solve someone looking in the mirror and feeling fake or the other thing with this condition the rush that one must pop out a kid or be married to feel worth while (I’m dating the people that got married in their early 20’s and are divorced now)  or the part need surgery so some guy will accept me .....what the ???? low self esteem there.

    If a man can’t accept your medical condition (all of it ) that’s not a man and not someone to make love to.  Men are actually interested in the whole condition and will tell you about family members or friends that have whatever condition. My voice is lower becasue of the CAH? maybe or maybe the thyroid condition? who knows but men mention that it is a sexy voice - when I was talking with someone else that has CAH? we were going on about if our vocies were OK. 

     So back to my point is the surgery she is going to have is to help her resolve what the adrenal gland did and if she is a higher prader scale like me then help with a period latter on .....nothing more and nothing less.  You will cross issues when or if they come and she will write her own story.  Ok right ...I had cancer and was reading about everything that was assumed and people telling me how I was supposed to feel ......didn’t happen.

     I weigh 185 pounds- have CAH had a clitorectomy, vaginoplasty, urethroplasty, men don’t care what it looks like or what it did look like becasue they want you and everything about you --- any sexual nerves there were sliced away and thank the LORD  that I’m visual, had cancer, have other medical conditions and I tell all about all the conditions. Sex? with people that I care about is great and got even better after the cancer but settling down with a relationship is difficult for me because then that is then the one like a wolf for life.

    How many marriages end in divorce? like 50 %  and I’m happy that I took time to find out who I am as an indivual person. I meet men that are married and I stated but you have a ring on and the reply was " Oh,  that is for the children" Not into married men here.   So, read what everyone says and note it but also know that your daughter and you will have your own story.  

      I had a second surgery myself for vaginal stenosis (canal closed in)  when I was 21 - first surgeries were done at five- clitorectomy, vaginoplasty, urethroplasty.   

     Yep, went to preschool with external genitals that were what the heck?- the shy didn’t fall in but couldn’t of had a period through what a had .....so yes surgery was a good call. I wish there would come a time when it just is  yep some have surgery early, some can wait a little, and some never have surgery - this all based on each individual case because then this condition will moved forward - I couldn’t ever assume what anyone thinks with this condition or any other. But, it is sad to read how upset...appalled some parents are because of the way I was born makes you feel like a troll that will never be OK  in their eyes. I don’t think that is you because you wrote with concern of the actually surgery which makes sence.

       I wanted to write again because make sure you take a sweater to the hospital because those places are cold and also try to treat yourself well during this time period too! Hospital cafeteria food is good but if there is a better resteraunt near by then go there because if you are in a good frame of mind then your child will feel that and get better! When I had cancer : ) I went to the best resteraunts that I could and other people were like you poor thing ..tragic and I’m like no but I found this great little bistro. Back to endo & cah stuff - there is this resteraunt across from the Endo Office/ one hospital  and I make sure that the appointments are near the time the place opens! See this is a frustrating and yeah scary condition at times but there are ways to cope. I’m just speaking of the top of my hjead abotu the condition and people going to call me names soon enough here but do know this young mommy ...is that God doesn’t give you anything that you can’t handle here and hope for the best.

   Yes, we are female and yes this is an adrenal gland condition. Yes, surgeries are better as they should be and this my surgery is better than your surgery stuff is sad and would be nice for a unity of the past, present and future if we could all know that surgery is good for some and not others and who knows who those people are? but support for all is needed. I don’t assume anything other than everyone does there best.

Oh and I always wonder if this might of helped me ? It wasn’t the surgery that did me in as much because logic again is that I needed a hole for the blood to come out of - I never owned that area and it belongs to the surgeron w/ his vision and to the endo wanting to view through the years but it doesn’t belong to me with their peeks and fingers all over it. See but maybe If I had been given something like a sheet to wrap up in and then another sheet? maybe things would of been different. 

I don’t know you but I do have CAH and I have every confident in the Surgeon she is going to (I have my reasons) and also in my own endo ...haaa I yell at him because I expect much more from him.

Just make sure that you are comfortable also when she is going through surgery .....ok : )  Whatever that might be .....blanket? pillow? food? books pictures? music ? incence?  

I’ve tried to talk to you as one person with CAH and my views are mine and mine alone and don’t reflect on how anyone with CAH may or may not feel.  

           The stars are beautiful and all the best.