Lucie's Story

[Received Feb 2002 ] [Update Aug 2005]

I am going to tell about how I discovered that I was born with Complete Androgen Insensitivity Syndrome (CAIS), and how it has affected me.

While I was growing up at school, I had noticed that I had not developed the curvaceous figures of the other girls in my year at school. I only started to develop very small breasts, and somewhat later than my friends at school, which was rather apparent when we used to go swimming. I hardly developed any pubic hair, and I have never developed any hair in my armpits whatsoever even to this day (I am now 22 years old). I had never suspected anything out of the normal before I knew that I had CAIS (when I was about 12 or 13 years old). I just thought that everyone must be made in different shapes and sizes.

Whilst at school I was quite skinny with long legs, and I was the best in my year at long distance running events in athletics or cross-country. Girls in my year at school used to talk to each other about whether they had started their periods yet, or whether they were regular, and though I had still never had a period before at the age of 13, I thought that they would come eventually. In fact I thought that I would end up getting what most girls get, other than the fact that I suffered with very bad asthma and allergies unlike other girls.

I don’t think anyone could have ever possibly mistaken me for a boy, as my face is so feminine in appearance, as is my voice and my personality. (Girls with CAIS tend to look extremely feminine due to no effect of masculinizing hormones). In fact a lot of people told me, and still tell me now that I am the most feminine person they have ever met.

One day when I was 13 years old, my mother and father called me into the lounge to have a talk with me. I was worried that I was in trouble, but my mother said that it was alright, and that I wasn’t in trouble for anything. She, my father and I sat down, and she asked me if I had ever wondered why I had two white lines either side across my lower abdomen. I said that I thought she had told me that it was good luck, when I had noticed them as a child once while in the bath. She told me that that was not the reason why I had them, and that they were surgical scars, because when I was a baby they noticed that I had hernias in my lower abdomen, which needed to be removed. She then went on to say that when the surgeons were scanning over my abdomen because of the hernias, they discovered that I had been born without a uterus (womb). She told me that this meant that I would not ever be able to have a baby out of my own tummy, and I would never get periods.

I really was in disbelief when she first told me this. It didn’t seem right – I had always wanted children of my own once I was older. I felt very depressed about this. My parents told me not to tell anyone about this, and said that I must keep it a secret, otherwise people would "make my life hell", as she put it. However I couldn’t keep this secret to myself, I was desperate to get my sadness about my condition off of my chest, and I went and told my friend (who I won’t name) who I thought I could confide in about how I was born. I had been too trusting of her though when, before I told her, I made her promise not to tell anyone about it. She later turned against me, and used to say on numerous occasions that if I didn’t do things for her that were against the rules, that she would tell people about my "little secret" as she put it. I used to pretend that I didn’t know what she was talking about when other people were around, and she used to shout out "You know, no p" (she was referring to periods by the letter p). She used to make me cry in school assembly by teasing me about my condition in front of other people so that they would hear about it. I used to try to shut her up, or reply back to her that somebody with my condition could always adopt instead, but she would reply that anyone with what I had would be devastated.

I missed a school French lesson one morning, because this girl had been making me cry about my condition in assembly, and I looked a dreadful state with red blotches, red swollen eyes and mascara down my face. A teacher caught me skiving off lessons, and I was in trouble. The teacher wrote a letter to my parents about it. My mother was angry with me for missing lessons, and I burst out crying, and said that she didn’t know the real reason why I had missed that lesson. She asked me if a certain person had been picking on me because of my condition, and I told her that this girl had been. My mother then arranged for me to be grouped separately from this girl, and I was never friends with her anymore after that. I didn’t complete my A-Levels at school, because after my first year in the sixth form we were given end of year exams, which I achieved very low scores in, and the teachers said that I should find a less academic course. This also upset me.

I did a cookery course, and then started to work as a chef, when I was 17 years old, which I hated doing, as all the other chefs were dirty-minded men. They passed sexist comments constantly, called me vile names (which I will not repeat), and swore at me constantly. Most of them tried to get me to bed with them, to which I strongly protested, and two in particular made me extremely unhappy and tearful there.

During the time that I was working there, I took two weeks holiday leave off from the job to go skiing with an old school friend in Switzerland. One night in a nightclub in Switzerland an Englishman (who I won’t name), who was 26 years old, kept trying to get me to go back to his chalet with him, to which I strongly objected. Then he said to my friend that she could come too, and she said yes, so I tagged along with them. When we got to this man’s bedroom in his chalet, he asked if we wanted to play a card game, which later to my shock turned out to be a form of strip poker. This man stripped naked in front of us, and kept pressurizing me to take my clothes off each time I guessed a card wrong. Eventually I was down to my underwear. My friend decided to get dressed, and get up and leave, and she left me with this man, and he raped me. Due to not having had vaginal dilation this was extremely painful. (Girls born with CAIS often need to have had vaginal dilation before sexual intercourse is possible, as the vaginas that they are born with are often too short up inside). It split my insides, and I bled a lot. When I got back from Switzerland my mother was unpacking my suitcase, and she asked why there was blood in my knickers, and I just said that I didn’t know why. I never told anyone about the rape, until over a year later.

At about this age my mother took me to see a gynaecologist (who I won’t name) at UCL Hospital, in London, because of my condition. Until this time I thought I had just been born without a uterus (womb), and had been born with bad ovaries that had been surgically removed, and I therefore needed to take HRT. I didn’t know that there was a name for the condition, and little did I know that something else, that I was about to find out about myself, was to be even more strange and upsetting to me.

My gynaecologist told me that I was good-looking, and that if he saw me walking down the street he would think "What a knock out" as he put it. (People had been saying to me throughout my teens that I should be a model). He told me about the syndrome, and then said that I had been born "genetically male", and that I had XY chromosomes. When I heard this I was in total disbelief. How could I possibly be male? I look completely female, and I’ve always only had female genitalia. I burst into tears after being told that I was "genetically male". I kept objecting that I didn’t want to be male. My mother and sister then reassured me once I came out of the gynaecologist’s room that I was the most feminine person they knew.

My mother sent me to a lady who was a counsellor for girls and women with CAIS. She seemed very pleasant, but seeing her didn’t change anything. My sister and my parents were picking on me at home by saying that I spend too long washing myself in the bathroom, and applying make-up etc., and then started saying that I was mentally ill, and that I had an obsessive compulsive disorder, which I disagree with. My parents sent me to psychiatrists for this, which I didn’t want to go to.

I met a boyfriend (who I won’t name), who was a lot older than me, who thought I was a model, and he kept suggesting that I should be a model. I needed to get the Tube [train] home after my first night out with him, but once I got to the station, the Tubes weren’t running anymore. He offered to give me a lift back to Liverpool Street Station in his car. I felt unsure about getting into his car with him, but as I didn’t have enough money for a taxi, I agreed. Instead of driving me to Liverpool Street Station, he drove me to his house, where he put some music on, and showed me how to dance ‘lambada’. While dancing with me, he picked me up, and carried me off to his bed. I could not stop him, despite kicking, punching and shouting at him to put me down and get off of me, as he was stronger than me. He then raped me, and then he drove me back to the station. I never told anyone about this for a while.

One day when I was on a Tube, an American man who was a fashion photographer came up to me, and he asked if he could take photos of me one day, and he gave me his business card with his name and telephone number on it. When I got home I phoned this man. I wanted to check that he was genuine and safe, and not another weirdo. So I arranged to meet up with him in a café, where he said he would show me his portfolio. He seemed genuine, so I agreed to let him take some photos of me in a park. We did this a few times, and then we began to get to know each other a bit. I asked for advice from him, because the man who I was going out with, (who I mentioned earlier), was regularly raping me in return for buying me meals out in restaurants. I asked the photographer if he thought I should call it off with the man who rapes me. The photographer said that I shouldn’t go out with a man who treats me like that, and he said that he was very worried for my safety.

I broke up with this man, and gradually got closer to the photographer, who is called Leo. I have told Leo about my CAIS, and he has always been very kind to me about it. He doesn’t have a problem with it, now that we are going out with each other. He loves me despite my CAIS, and has never held it against me. He says having children is not something he feels he has to do, as there are already too many children in this world.

Since being with Leo, my outlook on life with CAIS has greatly improved. Leo has helped me to be happy despite having CAIS. I’m so glad that I met him. I am so much happier now. He suggested that I study make-up artistry. I have passed a diploma in fashion photographic make-up artistry with merit now. I sometimes work with him, by doing make-up, and then he takes photos of it. I have found both a career and a partner that I love.

I have read a lot about CAIS from books and the Internet, and now I know exactly what it is. Girls born with it are actually very feminine, as they don’t get any of the effects of masculinizing hormones. I am happy to be just the way I am now. I would like to help with the AISSG (the Androgen Insensitivity Syndrome Support Group). So if any girls or women with AIS are questioning their own gender, once they discover that they are genetically male with XY chromosomes, rest assured that you are "super-female" as my mother used to put it, when she was reassuring me about my CAIS.

That was my story.

Lucie sent us an update in Aug 2005, as follows:

I was born with CAIS. I've submitted my personal story before [see above]. I have something I'd like to tell you about, and I'm wondering if other women with CAIS who had their orchidectomies [removal of testes] before puberty have turned out the same, or have been told the same thing by doctors:

I had my orchidectomy (gonadectomy) when I was 12, and then I started oestrogen HRT from the age of 14 and have been taking it ever since. (I'm now 26). I hardly ever developed any bust. I've never been able to fill an AA-cup bra. I've read that other women with CAIS tend to have large breast size, but I never have had. My bust shrunk a bit after the orchidectomy, and a bit each time I don't take the HRT for a while. I asked the endocrinologist if my HRT might be too low, due to being flat chested, and he said it wasn't, and that we must stay on a low dose. I thought this might be incorrect as women who take the pill take a much higher dose of oestrogen than us, and they seem alright.

The endocrinologist told me that cosmetic surgery works wonders, and the next time I saw him he asked if my bust had developed any more, and I said that it had just shrunk a bit, and he immediately said I should have cosmetic surgery. I was really shocked, as I thought cosmetic surgery could be very risky and painful, and I wouldn't like having scars on my chest. I've done some work as a model, where people kept saying I don't have any breasts, and told me to get some silicone, and lots of other people in general have said that I should get silicone.

I thought: it's not worth having the silicone put through my armpits, where the scar would be rendered invisible on most women by axillary hair, because I can't get any axillary hair, and I've never had any in my life. I went to see a breast surgeon, as the endocrinologist referred me to see. He drew on my chest with an ink pen where scars would be, and I was mortified at the thought of having scars so long under each breast. I asked if he could cut around the areolae [nipples] instead, but he said he could only do it under the breasts.

What I'm trying to say is that I think it was wrong of the specialist to decide that I should have the orchidectomy before puberty, and it should have been postponed until after puberty, so that I could have naturally developed a bust. Maybe then I wouldn't have to go through with the possible risk of haemorrhage, infection, rejection, scarring, not to mention pain, that comes along with having breast implants put in.

Could you put this article on the AISSG website, to persuade mothers of girls with CAIS to ask for their daughters' orchidectomies to be postponed until they've had a full natural puberty. I feel this would be better for the girl's self-esteem, as well as for the strength of her bones.

Thank you,

Yours faithfully,

Lucie

An AISSG volunteer replied:

Many thanks for this Lucie. If it's any comfort, I'd give anything to have small breasts. I have CAIS and I'm a 34 F or G, and although I didn't develop until mid-late teens (and it happened naturally -- gonadectomy not until my mid-20s) they certainly made up for lost time! I don't think breast development is primarily dependent on age of gonadectomy or on oestrogen exposure (HRT) but on heredity. I have large breasts mainly because my mother does.