Hilary's Story

[Received Sept/Oct 2003 - posted on site June 2011]

I am 45 yrs old [in 2003] and married with three adopted children. I have AIS and discovered it fully when I read my medical notes in the toilet at the surgery, when I was 23 yrs old and recently married. I would like to join the support group and am interested in attending the next meeting. Other than my doctor, husband, mother and social worker (when we applied to adopt), I have never discussed or disclosed my AIS with anyone and would be interested to meet others.

Here is some of my story:

Other than an uncle in his 60s who, after much butchery, was raised as a boy from the age of two, I have not met or spoken to another person with AIS. My uncle lives in utter torment as he has many scars and nothing to show for it. He would not speak to me about it and lives in fear of being "found out". I know this because he does make comments about it to my mother, who is older and remembers him originally as her little sister. Apparently, it was not obvious to the untrained eye that there was anything different about him, (apparently he has CAIS or maybe Grade 6 PAIS) but my grandmother had an older sister with AIS, who left home in her teens and it seems went off to join the armed forces overseas and was never seen or heard of again. An alternative to becoming a nun I suppose! The whole subject has been pretty taboo in our family and the exact nature of the "problem" is only known to my mother and grandmother. In fact, over the years I have had to explain it fully to my mother because she didn't have the full picture either.

I must say that due to many factors (including understanding from my mother that I was "like my uncle") I find it difficult to think of myself as female. I only pose as female and feel that I am intersex. I was the second born daughter and am three and a half years younger than my sister. I was hospitalised for the hernia repair when I was five years old and all was then revealed! My mother already had her suspicions anyway. I was brought up as 'special' and [was] always reminded that some people adopt children. I was never told that I would not have periods or what the problem was. However, with scars "down there" and growing bigger and more 'tomboyish' than my sister, I started to add things up. A biology lesson at school was interesting. We had to scrape cells from our mouths and peer down the microscope, but of course mine didn't look quite right and the teacher was called to help and muttered something unintelligible and strutted off. Well, that was it - further confirmation that I was really not a girl. Also, if I bumped myself on a desk or something, I knew that I was in excruciating pain, as boys are when they are kicked in the balls.

At 18 yrs old I had the 'gonads' removed and was told that there was nothing else inside me. Also [I was told] that I needed to use dilators if I didn't want to become a nun. Ten days later I went off to Oxford to train to teach; with two raw scars, Premarin and two 'Victorian' glass dilators, one of which was huge and had a centimetre long pointed nipple at the top - ouch! Unfortunately - being built like a model, that is 5' 10" tall, long dark hair, slim (then, not now!) and (so I was told) "beautiful", - I had many boyfriends. The first was too soon and was only allowed to kiss me. Poor soul ...he never knew why! The later ones were more fortunate and the artificial dilators became redundant. I was out to prove that I could attract any man and they didn't know what hit them. I became an emotional wreck and left Oxford and headed for the bright lights of London. Next came a job, a flat, playing flute in a rock band, offers of modelling, and I ate men for breakfast.

By the time I was twenty, I had met my future husband. He was a very stabilising influence and has been a 'rock'. My father died when I was 23 and I had panic attacks. It was during this time that I discovered AIS (well TF [Testicular Feminisation]) in my medical notes. I was in the third year of a four-year sociology degree at the time and headed off to the university library and read up all the 'gory' details. Everything was confirmed as I had thought - they were testes after all. It was exhilarating. I rushed home and told my husband the shocking news - the lead-up was so worrying for him that it came as a relief, as he thought that I was about to tell him that I was dying! Also, he had a degree in human physiology, so took it all in his stride (lucky me - who says there isn't a God?).

As they say, "All the rest is history". Now I'm overweight and over forty. My long hair is much shorter and I am a wife of 22 years and a mother of a boy of 16 and twins of 11 (boy and girl) - all adopted as babies. I have a BSc, a Masters degree and a Diploma of Social Work. We live in the countryside with two cats, hens and a puppy. I am a member of our local chapel and a committed Christian. I do a little fostering and adoption social work - to keep my hand in. I do very little sex as it all became far too painful.

So, to date I have lived a 'successful' lie. None of my friends really know me. I feel distanced from them. But they must not know - yet. I'm not ready. Also, at what conjunction do village chapel and intersex meet? I need to know and trust 'my own type' first. I look forward to meeting you all.

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