Samantha's Story

[Received July  2003]

I'm 36 years old with the above diagnosis [XY Gonadal Dysgenesis]. I had surgery at the age of 16 to remove the tissue that was there and was then commenced on HRT. Little else happened really. I realised I couldn't have a family some months later when I was sat in a biology class!

I have never met anybody with this diagnosis and feel exceptionally isolated and embarrassed by it. I am married to a wonderful man who is totally understanding and would talk to me for hours if I would. Unfortunately it doesn't change anything, does it. I have been married before to an unpleasant man and had two unsuccessful attempts at IVF with him. I also went on to have breast augmentation, really because of the pressure my ex husband put on me to look more like normal women (if only he knew the full truth. Luckily I never told him). He was also very violent.

At the moment my main problems are coming to terms with the fact I can never have children and that awful thought that I should have been a male. I just don't see a way forward at the moment and because nobody outside my immediate family knows, it is difficult. I am also unable to talk to my family because I find it totally embarrassing and myself totally repulsive.

I was once told by a doctor "You're healthy so forget about your condition and get on with your life"! Yeh, right! It just made me think the medical profession don't give a damn about the psychological side of things. That makes you feel even more of a screw up than you already are!

I grew up with the condition [being] called 'testicular feminisation'. I appreciate this is no longer used but to have that word, 'testicular', in your diagnosis was horrific and I had huge problems with it, as I do really with anything to do with AIS. The impact that word had on me is really immeasurable.

I am a nurse at our local hospital and live in absolute dread of ever having to go into hospital for any treatment in case people I work with found out about me. That I really couldn't cope with. Also the Consultant I work for was talking about _________ (actress) a few months ago and he said she had testicular feminisation (whether she actually does or not I'm not sure). I said "So what, she's stunning". His response to that was "Err, she's a boy". I said "No she's not, she's a beautiful woman" and again he said "No she's not, she's a boy, gross". Clearly he doesn't know about me. This just confirmed my worst fears and made me feel even more like I should be ashamed of what I am. I would love to have told him, just to see his reaction! I might expect that attitude from some ignorant person but from a person in his position was dreadful.

My GP actually instils a lot of faith in me. He's absolutely perfect, he will sit and just let me talk, and talk, and talk. I told him I was joining AISSG which he thought was a good idea and encouraged me. He was almost disappointed in himself for not pointing me in that direction before now. He actually admitted to me that the whole subject is very complex and he doesn't have all the answers so the group would be great for me. This wasn't a cop out at all for him because he told me to go back and see him anytime. The last time I was there he was actually surfing the net for me, to find out information that might help me. It's a great shame there are not more Dr's like him. He's the nicest kindest most honest Dr I have ever met and, believe me, I've met a lot.

Well, as you can see, I am one big screw up! and really struggling with this. You would think after 20 years of knowing this I would be use to it, wouldn't you. Do you think joining this group will help me?

Thank you for your time.