Nadine's Story

[Received Dec 2002]

Hello,

I don't really know where to start but I think I'll start by telling you a little about myself. I am a 19 year old female from Scotland in the UK. I am currently in a relationship and have been with my boyfriend for nearly a year and a half. I also have the condition CAIS. I found out when I was 16.

I remember when I was about 13 or 14, and most girls had started their periods and were getting curvy bodies, and I especially remember feeling totally ashamed and jealous that most girls had started developing breasts and I hadn't even started at all. I was really skinny with long legs and a flat chest. I know this condition of CAIS runs through my family, my aunt, great aunt and my second cousin has it, but I never knew the ins and outs of it. I only really got told that they never had ovaries or a womb and didn't have periods or couldn't have children. Anyway, my Gran said if my periods didn't start when I was 15 that I should go to the doctors. I remember being terrified as I knew I'd have to be naked for examination, and was hugely embarrased at my flat chest and lack of pubic hair as I only had a small amount, and was confused as to whether this was normal or not, but I was sure it wasn't.

When I was 15 my Gran made an appointment for me even though I protested, I said I would wait until I was 16. I never showed for the appointment, but when I turned 16 I made the appointment myself because by this time I was desperate to know. Most of my friends had their first sexual encounter by then and I was the only one who hadn't. I would avoid going out with guys for a long period as I knew it would have to progress to a sexual level and was scared senseless by this, so I would maybe just kiss boys when I was out at the weekend. Anyway I remember going to the doctors and getting blood tests and a vaginal exam and they looked at breast development etc. Then I went for a scan of my stomach.

I totally remember being in the doctor's room with my Mum the day of the results, when they told me I had CAIS. I can remember them going on about testes inside me and thinking I was a freak because no one in my family had mentioned that before. They said I couldn't have kids and would never have periods either. I was absolutely devastated. I didn't know what to think. I just remember crying a lot.

Anyway I had my operation to get rid of the testes and was put on a hormone pill and tried to get back to normal. Me and my Mum never really spoke about it after that or if I had hospital appointments I would refuse to let anyone come with me. I don't know why, I suppose I was embarrassed or something.

I remember when it was a few months before my 17th birthday and I kissed this man who was 27 that I met in the pub, (well I had seen him a few times but never really spoken to him). Anyway he wanted to take it further and I wanted to lose my virginity because all my friends had. I was scared senseless as I still had my fear of being naked because of my flat chest. Anyway I tried and failed to have sex with him. It was far too painful and his penis wouldn't go in all the way. The outer part of my vagina was swollen and sore for about 2 weeks. It was lucky for me the man was really drunk so was a little too 'out of it ' to notice.

I went to see the doctor and he told me that my vagina was shorter than a normal one as a result of my CAIS and that they didn't tell me before as they didn't want me to be scared of sex or something like that. I was really angry at this because I would have rather been told than go through with that kind of ordeal. I was referred to a specialist and given vaginal dilators and told to use them twice a day for 20 minutes a time. I hated the whole idea of them and would be too paranoid in case someone walked into my room that I very rarely used them. Also they were far too uncomfortable and sore to use. I would have to really psyche myself up to use them and would cry through it as well. It was just so degrading.

Out of every aspect of CAIS I would say the 'not being able to have sex' thing was the hardest. I was thinking that I would never be able to let anyone get close to me and I would never have sex. However one of my friends who is a male took an interest in me on a more personal level than friends. I was really scared to let anyone in because I'd have to explain things that I didn't totally understand myself and didn't feel comfortable talking about. Anyway he was really understanding and didn't pressure me into talking until I felt comfortable with it and eventually I told him. I didn't tell him everything though and never will. He doesn't know what the name for my condition is or about the testes or anything. The sex thing was the hardest to deal with. I felt guilty for not using my dilators because I knew if I used them we would be able to have sex. However I felt I was getting nowhere with them and would cry hysterically before using them.

We eventually decided to stretch my vagina through trying to have gentle sex to begin with. It was really tough and he was scared of hurting me all the time. It was a really difficult period and I always thought why is he with me when he could be with someone normal. I said this to him a few times which made him upset as well. It paid off however as we can now have sex without any problems. We first had full intercourse after 9 months and I'm really pleased he stuck by me because I was really moody and frustrated and angry during this time as we both felt under a lot of pressure. If it wasn't for him I would have tried to ignore the sex issue instead of facing the problem and I managed to fight back and get it sorted. I absolutely love him 100% and it made us stronger together.

I am also 100% feminine and have no doubt about this. I'm always getting told I'm attractive and that I should be a model. One of the perks of CAIS is you don't really suffer from spots. I'm more comfortable with myself now but I still get upset sometimes. I've come through a lot and I've cried so much over it but there truly are worse things in the world. I want to adopt children when I'm older but I still wish I could have kids of my own however I'll cross that bridge when I come to it.

Anyway sorry if I went on a little in my story and hope you aren't falling asleep at your computers.

The bottom line is that if you have AIS, you will get through it, trust me.

Love Nadine xxx