Jane's Story

[Received June 2003]

My name is Jane and I suffer from CAIS. I have just found your web site. I am a novice at e-mails and surfing the web and so have only just found you tonight. Thought I'd put in 'AIS' and see what it brought up. Never knew it would give so much info.

I did not find out that in had AIS until my mother read an article in a paper about Joan of Arc and we went to the doctor and asked him outright if that's what I had. The reply was yes.

I suppose things first showed when I was 18 months old when I had a hernia. At three years the other side was done but back in 1964 I don't suppose they knew much about AIS. When I was 17, I went to the doctor because I had still not started my periods. The doctor said I was as late starter. We were about to move and so nothing more was done at that time. About 6 months later I went to the doctor who sent me to see a specialist who told me I did not have an entrance to the womb. I then went into hospital for investigations. Following these I was referred to the Chelsea Hospital for Women in London [now Queen Charlotte's and Chelsea Hospital] and in 1980 had a bilateral gonadectomy. I was 19. At no time did I receive any counselling.

It must have been about a year later that I found the article. At that time I was not receiving HRT or anything. You can imagine what sort of effect the article had on my life. I didn't know who I was etc. Didn't know if I could have sex or anything. I had no one to talk to. I'm adopted and although I love my mother we are not close, there's lots I can't tell her. I can only remember my condition being talked about once since then, it's not really been mentioned.

At the age of 21 I had my first sexual experience which was fine but the following week it was thrown back in my face and that was it - with everything that had gone on I my life, I took an overdose. It didn't work and I was referred to a shrink who saw me once and decided it was because we'd moved to a new area and I didn't have many friends. That was it. Nothing about my medical condition. Since then I've had a failed marriage, which was never great but a way to get away from my parents, who watched me like a hawk after the overdose. After the overdose I started to get HRT which I've been on ever since.

I'm now 41 and still feel like a freak. My birth mother didn't want me, I'm a disappointment to my adopted parents as I'm not the daughter they wanted and I can't have children which is something I always wanted. I don't feel that I fit in anywhere and find it very hard to from friendships or attachments as I always end up getting hurt. It really annoys me that there is no counselling for people in our situation. People who have sex changes get counselling. We're just told one day: "Sorry, you should've been male, now get on and live with it." Wham, what a great way to have your whole world turned upside down. Sorry I've gone on here and I just want to sit and cry. I don't know if any of this makes any sense. Sorry.

Thanks for being there.

Jane

We replied immediately, sympathizing with her feelings, saying that many AIS women felt the same way through never having been given the chance to talk about things (with a counsellor, with other women) etc. She replied a few hours later:

Thank you for replying so soon. It's a comfort to know there is someone else out there. All my life I've felt different and had always put that down to adoption then suddenly to have my world turned upside down made me feel like a freak. Certain friends know about my condition but to other people I just tell them I'm the best drag artist in town... ...Yes, you can put my account on the web site and it's OK to use 'Jane'. I must go now as I've people for dinner but I was hoping there would be a reply. Thank you so much. Although I just want to cry, I'm really happy there is someone out there who understands. I'm no longer alone. I'm finally someone who belongs somewhere.

Thanks.

Jane

A week or so later she emailed, having subscribed to the UK group:

Received the newsletter [ALIAS No. 21] today and have not been able to put it down. Have read it from cover to cover. I can relate to the e-mail from the 24 year old who advised that the Chelsea Hospital [now Queen Charlotte's and Chelsea Hospital] did not tell her what her condition was. I saw Professor Dewhurst there and was not given any information re: my condition, CAIS. I didn't get any follow up from there either. It was only when I tried to take my life, but failed, that I started to get any kind of HRT treatment or monitoring of my bones. No psychological support though. Look forward to being able to attend the next meeting if possible. It will be nice to meet you all. I have obviously been thinking about things a lot and going through my past since finding this site.

Thanks for doing the good job that you do.