Dear J,

I’m glad that you considered talking with someone in the real world to help you as well.  I’m not into the ISNA and saddened that someone from that organization was not able to help you in the manner that you desired.

From my understanding of some studies  34% of women with CAH are lesbians and the rest are Heterosexual and also bi-sexual. Being a tomboy isn’t an indicator and remember that there are lipstick lesbians. "This is a shame becuause the woman running the ISNA could be helping people feel comfortable going against the advice of doctors, but instead she turned it into a gay rights issue"  I don’t know if you understand that part of the origins of the ISNA started with a doctor and that the ISNA  also has an impressive medical board.

I actually find medical professionals pretty willing to learn but they will stay ignorant or only focus on certain things if we within the CAH community don’t educate what and how far CAH has come. From there board one can see that the ISNA http://www.isna.org goes to colleges and universites to lecture on CAH and other conditions that they group with it. If anyone doesn’t like this then they need to get your letters.

You seem to have written much more about your child in these post then ever before- as then other posts were about looking good in a bathing suit. A urinary tract infection where there is pain different from reducing the size. You keep switching your story and another post you were talking about urinary tract smell but all this is something that has already been through and whatever the particulars were handled by the doctor with the most experince with CAH.   

 

I’m not for or against genital surgery but I am for education of the good and bad of it.  I’ve always written that each case is different as each family. I don’t think you are getting where some of the psots are coming from either or maybe it isn’t your time but it come to a point where all the studies get put away and no I’m not a fan of and Sarah whoever. My point with all that was is that one person brings up a study and then the next person and that stuff just goes round and round but comes a point where you have to look in that doctors eyes and just have faith in them and what choice of action you as a parent decided. I’m glad that you met one follow up appointment and would hope that you would consider allowing the surgeon to finnish his job will other follow ups.  It’s sad that you only responded to my post whereas ....Diana post was awesome in that how the surgeon wants to have a doctor patient relationship to build trust so that years later he isn’t some strange man coming back into the room. This guy Rocks to me!

Medicine learns from the past and when I write about the surgeon that did the clitorectomy, vaginoplasty and the urethroplastry to me  and he came in years later when I was 11 to see how his creation was doing and told me to slide down and push on his finger . He thought I was Ok with this and had trust becuase after all he was a doctor ...Cheif Ped surgeon and  later as I’ve written he was classy enough to listen to everyting that I said and from the bottom of his heart told me like and old lion that he thought using his finger was less traumatic and really was better than the other lady with CAH that told me about the dialators and learning how to use them as the residents watched. Isn’t CAH fun ? or any medical condition ...no but I think it is better that doctors today are trying to learn to have a sense of relationship. See .....medicine? ....and a quote from the old lion " medicine isn’t always right and is forever changing" I love that quote and use it time and again.  It comes do to trust and faith sooner or later.  I liked the letter from Diane in that one of the follow up Dr. Poppas just wanted to see the kid and say hi.

Medicine, Doctors and people with cronic conditions are an interesting lot. For me the surgery wasn’t a choice but was luming at the very lastest by age eight because the period blood needed a place to leave. I also think they waited until a five becuase they really weren’t that sure about waht gender I was going to take a fancy to and later from watching someone like me it would be gathered that even the most virilized females with CAH generally lean toward the female gender.

I feel for you in that you are concerned about what others say and I’m like that sometimes but I’ve also learned to let things go. You are past the studies and are on the road of what wil be. Nurses and doctors will still say things and I hope you will find that they just don’t know and actually like to learn the lastest as well.  I think reduction is to fit a mold and part of the reason my surgery was done for that same reason. I’m just someone that has this condition and each person is different. We aren’t privey to medical files and don’t know the whole story of any of us. I looked at my files and really was a lab rat that they were learning about CAH. The endo did many things right for the time period and for CAH besides teaching others. the teaching others part ruined me and I have no sence of personal self- respect. Like the other poster, I feel like an animal and just through me some cheese.

Anyway those people you feel are nasty to me on the board are just frustrated with CAH and I’m an easy person to vent at. I feel good that they can get things out and they might feel better after that. If anyone was really that nasty we would be tossed of this board. Anything that I’ve been called just builds me up and the only thing that I can control is what I say. It is illogical that people are nasty on a message board about their or their childs medical condition think rather scared or upset about having any condition and that might come out as nasty .  I learned second hand that some very educated people that I thought the world of and also thought they were a little more stronger thought that I was abrasive and I thought that was a laugh plus thought they were to wussy : )  to tell me to my face. They thought I was abrasive and strong when I was truely scared that my cancer came back and it was urgent to me that this was the focus and never mind them using that time for CAH. We get aggressive or some might say nasty at times because of fear of the unknown.  

Everyone just rags on Doctors or nurses but nobody wants to really talk with them and that is sad.  I’ve had doctors and nurses, counselors tell me things about CAH recently that would bother you and from your frame of mind - I will not go there but they we trying to learn and were trying to relay to scum little me that they knew something even if it wasn’t right or not the focus that would benefit my health. You can get upset and tell people not to say things or you can learn to deal and move through.

Outcome is the outcome and you the person that has it must deal they best they can - your child is already  going down whatever path.  

You changed or added? about your child’s condition  and you want to get into this match about stuff whereas i hope you find some peace and understanding about things.

I think you should let this surgeon do his job.

Any surgery has follow ups at differnt times for different reasons.

take care,

Aimee