Dealing with gentical exams is the worse part of having CAH. If I could tell the doctors what would make it a little better, it would be it :                                                         ( The part in bold applies to boys and girls.)

You need to tell the patient exactly what you are going to do and why. Then ask them if you can do it. Just saying "can I take a look ?" doesn't help matters. You can explain things to the patient in terms that they can understand.

Keep talking to us, it helps to be distracted. 

When I was 10 years old, I tried talking to the doctor while he was doing the exam. He replied " no" to what I was talking about . The exam was finished in silence. I felt like I wasn't even human to him.

Please talk to us. 

When I was 21, my Endo was checking how everything looked after I had my second surgery. While she was doing this, she also was chatting with her nurse about what she was going to make for dinner. She didn't even tell me when she applied a cold gel.

You need to tell us when you are going to touch and what part you are going to touch so we are not surprised by this.

I had a doctor pull my labia apart with his two fingers. This uncomfortable enough when it happens to you as an adult. Another time an intern wanted to do an internal gentical exam. I had no idea that he wanted to put his finger inside. It didn't work and I apologized. I was twelve years old.

We are not a display model. Have the interns practice on anyone except a child with CAH.

When I was 14, the Chief Endo used me to show the interns how to flip up a bra on a patient so they could use a device to measure my breasts.

 

With my experiences, the effects of gentical exams has crossed over into other parts of my life. I feel that it has to do with the lack of control I had in the exams. It hasn't been until recently that I've done therapy to develop coping skills to deal with this. Before, when there was something that I couldn't control or when I thought others were controling me I would have varied emotional outburts followed by a change in mood, sometimes going into a depression. Now, I realize that there is much that you can't control and you really have to let go . I'm talking about the daily things that would happen in life. I used to burst into tears if they didn't have my shoe size at the department store or have a panic attack because the line at the grocery store wasn't moving fast enough for me. Now, it's just stuff you deal with in a calm manner.

This is just my experience in dealing with CAH. Someone else can feel completely different. That is a good thing. If there is something that someone can relate to in my story and it helps them, I'm glad.  If what I have said offends anyone, I'm sorry.  It was not meant to.