ATTENTION MEDIA & OTHERS SEEKING INTERVIEWS!
If you represent a media company, are a student writing a report or anyone interested in interviewing our visitors, please seek permission (see email address at the bottom of the page) before posting your requests or emailing solicitations for any talk show, magazine, thesis, census or other interview on any message board on this site. If not, your posts WILL be removed. Please respect the privacy of our members.
Thank you for your quick responses! I'm sorry I didn't write more the first time, but I did not have time. I am 36 years old and was just diagnosed with regular CAH - not late onset. Basically, I went in for a pap smear last week and the doctor told me I looked like I had been circumcised. I'm 36, I've been married for 15 years, and I have had 4 children (all c-section) and no one has ever mentioned to me before that I have evidence of genital reconstructive surgery. I learned that my clitoris and labia minora are missing. So I started doing research and talking to my mother and the best we can put together is that I was born with ambiguous genitals and the doctors did surgery in the first few hours after I was born without telling my mom or dad! The doctor's waited 15 hours after I was born before they brought me to my mom, so they had plenty of time. Then, my mom was in the hospital with me for 6 days but they never allowed her to unwrap me or look at me (there were nurses watching to make sure she didn't). I was her first born and she just thought this was the way they did things. Anyway, by the time I went home I was healing and no one was any the wiser. She did call the doctor the next day and said I looked very swollen down there and there was blood in my diaper, but he said it was her maternal hormones and it was normal.
Then I had my first adrenal crisis when I was 9 months old. All mom remembers is that she was shopping and I threw up, passed out, then stopped breathing. I hadn't been nursing well so this one must have been from dehydration. The ER doctors pronounced my dead on arrival and were consoling my mom when I started screaming. I don't think the doctor's knew to check for an adrenal crisis because they did not know about the surgery as an infant. They just told my mom I must have choked on some spit or something. I had the next crisis a month later and the doctors then thought I had a nonspecific seizure disorder so they put me on Meberal until I was 7. The episodes didn't happen very frequently, but they have been consistent throughout my life. Every time I have had surgery (c-sections), a trauma, or some medical scare I have decome disoriented, thrown up, passed out and woken up 4-6 minutes later in a cold sweat. The most recent of these happened this past January. That one was from dehydration (I had not been out of bed for three days due to depression) and I passed out in a restaurant. When I woke up that time I was surrounded by EMTs and they rushed me to the hospital, thinking I had a heart attack. But the tests for that were all normal.
I'm sorry I'm going on so long - this is just so new to me I need to tell someone! My current doctor agrees that is sounds like CAH, but they are running the labs right now to make sure. She says it was never diagnosed before because no one knew I had surgery as a child, and because no one looked for why I kept passing out in times of crisis. My reaction to this is - I can't believe I had reconstructive surgery the day I was born and NO ONE KNEW! I have had sexual disfunction all my life (which has made marriage interesting) and I have struggled to feel "feminine". Now I know why, but I don't necessarily feel any better. How do you all cope with this? I don't want to offend anyone, but I'm struggling with feeling like less of a woman. I'm not sure how to get past this...
