*I posted this under a previous inquiry about surgery as well

My name is Alison and I am in my 20’s and have CAH.  I also have two sisters with CAH and we all had our genitoplasty surgery performed at Stanford University Medical Center by Linda Shortliffe, Chief of Pediatric Urology.  My parents shopped around quite a bit; in fact, they looked for the right surgeon for two years.  Things have certainly changed in the last 15 or so years, and parents today have more options, but our surgeon at Stanford was lovely, and none of us have required surgical revision (we were also fairly high on the Prader scale - one of my sisters was a 4.5).  We have normal sexual sensation, no urinary leakage issues, and do not experience pain during sex. 

Every OB/GYN and Urologist I have seen (and when you have had a vaginoplasty, you usually get the Chief or Sub-Chief of the department - not that that is always indicative of their experience or skill level) has been impressed by our lack of scar tissue and normal function and appearance. 

I’m not sure if Dr. Shortliffe is on the CARES approved list - I’ve never seen the list and CARES was not in existence when our surgeries were performed - but she was great for us.  You can look at her profile online by accessing the Stanford Hospital Web site and searching physician profiles.

I know this is a very scary time for you and that this is one of the more difficult decisions that you will have to make with regard to your child’s health.  The surgery was performed when I was eight years old, and I remember everything from the pre-op consultations to the recuperation process. It was painful, scary and difficult, but it’s not something that troubled me throughout childhood, nor is it something that I even really think about often as an adult.  I enjoy a healthy sexual relationship with my husband and did not feel different in any way from my peers throughout school.  I was not self-conscious with regard to the surgery or other CAH issues throughout high school or college.     

If you would like to ask me any questions about the surgery, surgeon or CAH issues, you (and anyone else reading the post) are welcome to email me directly.

Best regards,

 

Alison