Hi Beth,

  My name is Aimee and I have classical CAH. I can't comment on the VCUG test but I feel that I have a story that relates to it.

  When I was 21, I needed to have a second surgery done. My urologist wanted me first to have an ultrasound done. No problem by me, here I was 21 and dealing with CAH on my own. I was so excited ! 

   So off  I go to have the ultrasound done. I was proud of myself for drinking the chalky water they want you to drink. I did everything like they wanted me to.

   The tech noticed that I was trying to make the ultrasound test a fun experience. I kept laughing about the goo they use. The tech got into my happy attitude and started showing me everything......there is your left ovary etc. Then his whole attitude changed, he got very serious and stopped showing me anything. He stopped answering my questions also, I felt very confused. The tech then left for about a half a hour an came back when his supervisor. They both had such serious looks on their faces. The supervisor poked around lower part of my stomach for a little bit. All the while, I'm telling them that I have CAH and it's ok. They never let me know what they were thinking. The supervisor told me that I was free to go. I guess that they never met anyone with CAH. I'll never know but one thing is for sure I walked out of having that ultrasound feeling confused.

    I've since learned that many techs, nurses, and even some doctors don't know that  much about CAH. This is a scary fact that I've learned to accept. After I had my surgery done a nurse came into my room and asked me why did I have this type of surgery done ? This was surgery to have my vaginal track widened for sexual intercourse. It freaked me out that I was the one that had to explain to her what CAH was. Later, the thing with the nurse just made me sad. Now, when I have a test done I take it into consideration that the person has no idea what CAH is.

    I hope that my story helps in some way.

    Maybe, you could call the urologist and ask him to call you back at the end of his work day and then ask him the questions that you wanted to.

Take Care, 

Aimee