Karen's Story

[Received Sept 1999]

I have seen your site on the Internet... I have only just gone on line, having had Internet access at home since Friday, and I’ve learned more about AIS over the past 72 hours than I have in 35 years.

I live in _____ [UK county] and I am 35 years old. I am divorced and have a beautiful [adopted] daughter who is 8... I have read several of the personal accounts on the system [web site] and it has been wonderful to find out that perhaps I am not as freaky as I sometimes allow myself the freedom to think! I do, however, feel that I have been fortunate throughout my life and although much of what I have been told over the years have turned out to be untruths, the support my parents and medical staff have given me has been good.

At the age of 3, I was rushed into The London Hospital, Whitechapel, with suspected hernia... where I had to have a 'hysterectomy' as the uterus was deformed. I then visited the hospital every year for a check up to make sure that I was 'developing' correctly (these trips to the hospital were always a great family day out – new outfit, trip to different sights, London/theatre afterwards, box of chocs for my doctor, etc.). I used to look forward to these trips each year... The experience was that good – no I'm not warped – honest!

Anyway, I was seen by the paeds team until I was 18 – when I was transferred over to the gynae section – what an eye-opener that was. It was never explained to me that my vagina may be short and as a teenager I was very conscious that I had no pubic hair and so consequently I was very reluctant to have any form of sexual relationship. At 19 I took the plunge with someone I had known for only a short while and it was an absolute disaster! I mentioned this to my doctor at the next visit and they said that I would need to come in for a 'stretch'! – I kid you not – can you imagine how scared I was! Anyway, I book 2 days off work and went to hospital. They ‘put me under’ because they said it might be uncomfortable. When I awoke I was in incredible pain and was told that the 'stretch' was unsuccessful and they had done some reconstruction work and extended the vagina.

I was off work for three weeks – in extreme pain... Anyway, I went back for my 3 month checkup and was seen by some registrar. He asked me how my periods had been since the op and did I always shave myself or was that just left over from the op! I sent him away rather rudely to read my notes and he came back rather red-faced. By that time I was dressed and told him that I would never return to that hospital. The whole episode was my one and only bad experience of the medical profession.

So I quite happily continued with my life – a few downs about not being able to have children, but generally happy although knowing that there were still some unanswered questions but ones that I didn't actually want to ask, just bury them under the carpet! I married, (my ex-husband was very supportive) and we adopted our beautiful daughter. After I had been separated about a year I read an article in the Daily Mail about Wallis Simpson and how there was speculation over her gender identity and how they thought she was a sufferer (!) of AIS. Reading this story sent shivers down my spine – I was hot, cold, excited, nervous, sick, elated and just about every other emotion you can imagine. By this time I was 32, a fiercely independent business woman who was fazed by nothing!!

So I wrote [to the hospital] and asked to see my records! I then received a phone call from my old paeds doctor... I asked him on the phone if I had AIS and he asked me what that was – I told him what I knew about it and after some pushing him, he confirmed that I did. I was totally knocked for six... Anyway, I went to the hospital and saw Dr Snodgrass... who sat for about 2 hours with me and answered all my questions, showed me my notes, printed me stuff off the Internet, and was generally an absolute darling! I came out of there reeling from all the info but still very much in denial about my true feelings – putting across that I could handle all this and wasn't it wonderful that I finally had answers...

Over the next year however, my mind started festering on the fact that genetically I was male. Following the breakdown of a relationship I got to the stage where I was really unable to cope and sort things out in my own mind and finally faced the fact that I needed some professional help... My GP was a tad un-helpful and after much crying in her surgery, and me saying, honest Dr I have really tried to pull myself together but I just can’t – she referred me to Relate for some counselling (obviously as this would not impact on their budget!!).

Whilst waiting for an initial interview I was due to go and see Dr Monson [endo. at Bart’s Hospital] for my yearly checkup. This was 2 days after my first visit to Relate. When I saw Dr Monson I just completely lost it and he was just so supportive. He must have stayed with me for about one and a half hours, putting all of his other patients back, just talking to me about things, letting me get everything off my chest and blurt out 33 years of confusion, pain, shame and guilt... Dr Monson is still very supportive and a very kind and generous man. He has really helped me through a lot of things...

It has also transpired that it was my parents’ wish not to tell me about my medical condition. 30 odd years ago things were very different and my parents went into total denial about the condition and were truly surprised when I told them about what I had found out. In spite of this I am very grateful to my parents for what they did and feel that although I always new something was different/wrong, their support and guidance and positive attitude towards myself as an individual has, I feel, enabled me to cope with this new knowledge. They are and will always be my parents, mentors and best friends.

So for the past 2 years I have just really been coming to terms with things. I now feel I am in more of a position to speak to others about it (although no one who actually knows me as me!) and I am glad that I have found out about this organisation... It is just so great to be able to blurt this out to someone who knows what it is I am talking about and someone who can perhaps empathise with some of my feelings, experiences and fears... I would be interested in coming to the next meeting you have – although just thinking about it makes me very nervous!... Thank-you for being there and for allowing me the time and place to finally air 35 years of confusion.

One final note is regarding the traditional signs and symptoms of AIS body type – tall, svelte almost athletic bodies, ample breasts, etc. Well I'm 5' 2”, slightly overweight, about as un-athletic as they come and with two fried eggs to boot!! Oh well, some you win, some you lose!! Take care and thanks again.

Over drinks, the night before the October 1999 UK group meeting, she appeared particularly perky, but was the first to shed tears that evening. She emailed after the meeting:

Dear All, Just a quick e-mail to say a big thank-you for such a wonderful weekend. As you can imagine, the drive home was a strange one with many mixed emotions. I was so elated to have finally met others that shared such similar problems/emotions/experiences as I have over the last 30 odd years. It was strange that sadness, joy, awe and a sense of finally belonging can all be rolled up into one huge emotion – and not knowing whether to laugh, cry or do both – so I did both.

When I got home I went and had a long chat with Mum. As always she was supportive and let me take the lead – not wanting to pry too much as to what the weekend had been like. I told her first about all of the positive things about the weekend, how wonderful everyone was and how much I had enjoyed being able to talk freely about what until now had been quite mixed feelings. Although it will take some time for me to fully accept things, I know that if my acceptance was the M25 [London orbital motorway] – I would be somewhere near South Mimms by now!!

On the way home I was trying to find a way of expressing just how I was feeling – this was difficult because of all of the contradictory emotions that were whirring around inside of me. It wasn't until I was talking to mum that I finally realised what the weekend had meant to me. I explained to her that I no longer felt as though I was 'weird'. It really was a moment of sheer personal enlightenment – I now know that although I may be different from the 'norm', my anxieties, fears, concerns and emotions were all absolutely normal for an AIS woman. It is true that you can't expect others to accept you until you have accepted yourself. I finally feel that I am now beginning to allow myself to look at me and say “Hey, you know what? You're an alright person, in fact no, you’re a bloody wonderful woman”.

I know I've still got a lot to come to terms with and there will be ups and downs over the next days/months/years. But I am so much more positive about myself now and no longer feel that AIS is something to shy away from and hide from the rest of the world like it is something to be ashamed of. Whilst I would never be the sort to shout it from the rooftops, I now hope that as I can start to be honest with myself, I can be honest with my family, friends and hopefully future partner(s). I can't wait until the next meeting and seeing everyone again and the Mark-I Merkin is already in the design stages (patent pending of course!). I would also be interested in joining the e-mail circle – so if you could send details that would be great... Thanks again and a big hug and kiss goes out to all those 'ballsy' women!! 'Cause, hey – you gotta have balls to be able to cope with AIS!!

At end of November 1999, she wrote:

Thanks for your message, yes that’s fine I have no worries about any of my e-mails being included in the next issue... Hope you are well, I am being referred to [Dr.] Gerry Conway so hopefully will go up to see him soon... Also off to see my consultant next Monday – this time feeling a whole lot more in control and armed with lots of questions – poor bloke, I hope he has a hearty breakfast on Monday!! See you in March....