Celine's Story

[Published in ALIAS No. 6, Winter 1996, under the title Uphill Struggles.]

I am 34 years old and have AIS. I come from quite a large family, mainly girls, and AIS has run in our family for generations. My doctor thinks it started sometime last century when a male in the family passed the defective gene to a daughter. My mother, who is in her 70s, tells me that she had some sisters and aunts who were the same. I am one of seven children (six girls aged 30 to 51, and one boy). Three of the girls have AIS and the other three may be carriers.

When I was very young I went to stay with one of my older AIS sisters (the condition had a different name then). She told me that I “would be just like her”. In my young head I thought she meant ‘tall and beautiful’. This was OK with me because my three non-AIS sisters are small, have a different type of hair, are not particularly stunning, and can have children. The three of us with AIS are taller, bigger built, have a good head of hair (though hairless everywhere else). We are also more academic and all have good careers. This is in complete contrast to my other sisters, who all did badly at school, badly in jobs, and are small, and are normal.

When at school, I wondered why I was a slow developer (no periods, no body hair, very small breasts and no acne) and was tall, thin and athletic. When I started relationships with boys, in my later teens, I had a few problems but I thought my boyfriends must have been particularly well-endowed. A bit later I started asking questions but my mother would not talk about anything then; and I used to resent her for this as she could have taken me by the hand to a doctor and got things sorted out years before – but she didn’t. I started to pester my doctor as to why I didn’t have periods. After a long time, he referred me to a women’s hospital where they looked inside my abdomen with a laparoscope. The consultant told me everything was fine, there was nothing to worry about but there might be a chance of cancer if my ‘bits’ were left inside me. I took this very badly and thought my ‘bits’ were the usual women’s ‘bits’. No one told me any different. One week later, aged 20, I was having what I thought was a hysterectomy. After the operation, the doctor said that I “might have a few problems in the future when I had a boyfriend”, and that if so, I should “go back and see him, for some tablets”. He didn’t say what problems, and I didn’t ask (it’s all too embarrassing when you’re young). I was a career woman by that time, but talking about things like that was too much.

I had many horrible times with boyfriends and broke up three weeks before one planned marriage. Eventually I married a man 12 years older than myself, but sex was awful and so were my mood swings. In changing doctors, my medical records went missing. I kept pestering my doctors for help but they kept fobbing me off. I showed one doctor my ‘hysterectomy’ scar and said I felt my problems had started from that time. He gave me tranquillisers. Eventually, I saw a lady doctor for the first time ever. She tracked down my notes from the women’s hospital and phoned me at work one day and asked both I and my husband to come and see her. She was lovely. She held my, and my husband’s hands and explained that my body didn’t make oestrogen and started me on my first HRT, aged 27. I suddenly felt ‘normal’ – overnight. I also started visiting Queen Charlotte’s Hospital in London, once a month, to pick up different sized ‘dilators’ to stretch my vagina. I thought I was on the path to recovery and being normal. However, my marriage failed, but I have now met a lovely man and we marry next week.

Two years ago, I went for a major stretch of the vagina under anaesthetic, in which a torpedo-shaped thing was pushed into my vagina for 24 hours. I also have some horrible memories of very unsympathetic nurses trying to insert metal objects into me in order to do cervical ‘scrapes’. A few weeks ago, I read about a forthcoming TV programme on AIS.^{[Ref 1]} I asked my current doctor (who is wonderful) if I was the same. He opened my notes and we read them together. It seems that when I was 17, a doctor had recorded that I had a 2 cm vagina and XY chromosomes. I had never seen this, or been told this before. I never really knew that the length of my vagina was so abnormal, since one doesn’t really ask other women what size they are! The so-called ‘hysterectomy’ was to remove gonads that had been producing testosterone and oestrogen. Of course, after their removal I was badly affected by a lack of oestrogen. My doctor has now referred me to a plastic surgeon to make my vagina longer. The oestrogen HRT has increased my breast size and to all intents and purposes, at the age of 34, I shall be a ‘normal’ woman at long last.

Ref 1: 'XY Women', BBC2, 29 Aug 1996. Part of the 'Dark Secret' series of six programmes.

I told my mother to watch the TV programme and as a result we can now talk about things. I have told everything to my future husband. He is very supportive and wants to be with me at your next meeting. Yet all of my problems pale into insignificance compared to one of my two AIS sisters. I don’t see much of her, as we have never really ‘got on’ and yet, two days after the TV programme, she called me to come over for a chat. She is 48 and still has no vagina, and has never grown real breasts. She told me that when she was in her 20s she was called to the women’s hospital, told to get undressed and stood against a wall and had her photograph taken. She then overheard someone saying that she had “the body of an 11 year-old girl”. She has really suffered and has now resigned herself to her “living nightmare”, as she calls it. She says that when she was younger, she never found a doctor who was sympathetic enough to understand and help.

I told her my doctor had said I was not too old to have a quality of life, involving sex, which every other woman takes for granted, and that I was waiting to see a plastic surgeon. She says she is envious of me for constantly trying to do something about myself and pestering doctors. But she is very bitter, and says “What’s the point of having something done without a man in my life?” Do I have something done, then find a man; or find a man then say “Oh, I’ve just got to nip into hospital for an operation, so we can have sex”. This AIS thing is eating her up and she is blaming it for everything bad that has ever happened. She contemplates suicide and is ‘setting her house in order’ by making a will.

I apologize for this long, and possibly hard-to-understand letter – it is just a lifetime of pent-up anger and frustration.

Two weeks later, she wrote:

Thank you for sending the copies of ALIAS. I just could not put them down; I read until 2.30 am; they are so enlightening. I have now spoken with my sister about a lot of the things that I have learnt courtesy of yourself and ALIAS, and as a result she has just obtained her first-ever prescription for HRT, at the age of 48. I will let her read ALIAS, so she will see that by acknowledging it and talking about it, and reading other people’s experiences, she will be able to cope with it better and not be so bitter and resentful. I can’t wait for the next meeting in March ‘97. I feel like I will at long last meet a ‘family’ that I belong to, and people who have had the same experiences as myself, or understand completely how I have felt. I hope to bring my sister with me.