Elaine's Story

[Received June 2003]

I am a 43 year old woman with CAIS and have just had a gonadectomy 3 weeks ago and am about to start HRT.

I can't remember how I knew that my middle sister (9 years older than me) could never have babies, it must have been from overhearing the adults talking. We were always sent out of the room when adults where 'talking' and so it made it all the more interesting to hear snippets when you could!

At 14 and at a private girls school, I realised I was not the same as my chums who all started periods etc. I had been late to develop breasts and being a tall girl and looking older than the small fries, I desperately wanted them to grow. When they did start at around fourteen, they did not seem to stop! But that was all that was happening and so the doctor was visited and I think it was then that they spoke about me being like my sister.

A specialist visited our house and examined me in my bedroom. I was mortified. He told me that I would not have children but that I was a healthy big girl and that I would go on to have a normal life, and I could always adopt. He spoke to my Mum privately and left. She didn't say anything to me apart from asking if the doctor had explained.

At 19 I went to my GP myself and he arranged for me to have a laproscopy and that's when AIS reared its head. At the time they said they would not need to do anything else to me, that I should eventually stretch when I started to have sex, and they emphatically pronounced that I was a woman in bold capital letters! In fact more female than female. I did not understand what that meant. I remember being examined by a host of students, as they would rarely get the chance to see a patient like me. I cried all the way home. It was the same specialist from when I was 14 and he would call me his "beautiful high school girl". I was going abroad on holiday a few days after a hospital visit and he had great pleasure in telling me that I could have all the sex I wanted in Spain and not get pregnant. Ha ha! Sensitive or what!!

My AIS sister married at 24 and went on to adopt her daughter who is now 21. My eldest sister has 2 children (naturally) and is a grandmother. Her daughter is only 7 years younger than me and we are closer that most sisters.

Years went on and I was working, doing well in a good job. I was tall, slim and, well I was often told, a good-looking girl. I even did a spot of modelling and appeared on TV adverts. I went on dates, I wore all the latest fashion, was confident, popular and self-assured. Of course it was mostly an act. The dates never went anywhere as I would stall and stall and would never take my clothes off, they soon god fed up. I would make up boyfriends or embellish relationships that where not true. I knew that some people in my crowd wondered about me. I would laugh and say that I did not want a serious relationship that I wanted to be footloose and fancy-free!

Eventually I went abroad with work and told everyone it was a new and exciting opportunity for me. It of course was all that and more, but really it was me running away. I soon had a whole bunch of new friends and life was wonderful with a whole new crowd who did not know anything about me. I met a man and knew he was the one within days. I didn't tell him everything at first, not even when we first slept together, but with a lot of encouragement and love it all came out.

The pain when I first had sex was unbelievable, and there was so much blood. I was so scared that I had done something terrible to my insides. Soon and with a lot of tenderness the soreness gone, I went on to have a truly wonderful love affair and the sex was heaven. He was my saviour and we were together for almost 6 years. I loved him deeply but there was always this cultural rift and getting married would have been a big step normally, but marrying a woman who could not have children was just too deep a ravine to cross. It was never as blunt as that but it was really the reason why I left him in the end. Everyone though it was the different race, different religion etc, but to be honest none of that mattered. I thought my heart would break, it was physical, the pain. I remember living at home and going into the shower in the day so that I could just cry my eyes out. Of course my Mum knew, everyone knew but no one said much, just that they where glad that I was home and that hadn't wanted me to live the rest of my life so far away.

I got a job in the same field in another town and moved there and within weeks met my darling husband. He has loved me from the beginning and thinks I am the sexiest woman alive! I did not tell him about AIS until quite recently, mainly because it's only with research on the net that I have come to understand it. I did try to explain what was wrong with me but he never really took it on board and just told me that it did not matter to him. At first, he just thought that I shaved down below! The collar does not match the cuffs or something like that!! He did not find our sex life any different to any other women in his post. He has been hugely supportive, especially recently. We married when I was 34. The children issue was a problem for me but never for him and we have been married for over 8 years now. We have lived all over the world and are now approaching mid 40s. My lovely niece has had twins (they are my joy) and my nephew and his wife are waiting for their first baby very soon, so the family is continuing somehow!

During the last 6 years we have lost both Dad and Mum. It has been a devastating loss to us, despite the veil of silence about me and my sister's condition. We were very close and we loved our parents so much. I don't blame them for not confronting the issue, I just don't think that they understood it. No one explained it to them either. I remember once when my mum was upset about something, she said that she blamed herself about me and my sister, that she had smoked when pregnant (it was not unusual in the 50s and 60s), she assumed she had caused her daughters to be infertile.

A couple of years ago, my eldest sister was diagnosed with osteoporosis and was on pills and calcium. It made me think about what was happening to my bones and if I getting enough estrogens to keep my bones good. Also I worried about when I am older, will my bones deteriorate. I went to my doctor and was eventually sent to the hospital and had a scan and was told I was low-normal and was put on calcium. The blood tests showed my hormones level at postmenopausal. My doctor sent me to see a specialist who explained to me about the risk with still having this gonadal tissue in me and that they were very surprised that I had not been operated on at 19 when I had the laproscopy

I went on to see a further couple of specialists at a major city hospital out with my immediate area and have gone on to have the [gonadectomy] surgery almost a month ago. Am going for another bone scan before starting HRT. I feel fine, the wound is still sore and am a tad tired but feel about the same in myself so far, and that's without any HRT. Had post op check up the other day and they are delighted my progress. The op was done in an NHS hospital and I was treated like royalty - the top surgeon, the top anaesthetist, the top endocrinologist. The ward staff said they had never seen so many 'suits' on the ward at one time!

Why was it done so late? Well I don't really know, as when I was 'diagnosed' at around 19 it was sort of pushed under the carpet and I did not really understand the nature of AIS. It was not until a few years ago that with a bit of research, that I came to understand it. Basically I was left to get on with it and it was never discussed, not even in my family.

I am taking 2 months off work and as a result of going in to hospital and telling my sisters, we have now talked openly about it for the first time ever. My AIS sister cried and said she felt responsible and had told Mum at the time to push and pursue the investigations when I was younger. I did not realise that my sister had had the surgery in her 20s when living in London. She is a 30 year nurse and came to stay to look after me in recovery. I have missed my Mum so much over the last 2 years but never so much as over the last month. I wish we could have really talked instead of brushing all this stuff under the carpet. I wish I could have had a really frank discussion with my mum to see how she felt about me more than anything, but I think it would have hurt her too much.

I have read conflicting reports about the gonadectomy and the percussions of it. Perhaps not having the op till 43 I was never going to be a victim of cancerous changes, but who knows. I have been told the results of the lab reports and nothing abnormal was found in the tissues removed from me. I wonder, did I really need to do this surgery? Of course I am concerned about HRT and continuing on it for years to come, but also who wants to be sitting on a time bomb, no matter how small the risk. I have too much in life to do yet!

On researching AIS (I am CAIS) a lot of questions came up in my head. Was I really genetically male? Apart from the big feet, did I have male characteristics!? It didn't add up to me. I was the most girlie girl and have always been into very feminine things. Then of course there is the clumsy and determined side of me that likes to get my own way and can be quite pushy - male aspects? When I told my husband of these thoughts he just laughed and said that he loved me because I reminded him of some hairy arsed rugby player - NOT. He said I was all woman. A bit of a contradiction if you understand the nature of AIS.

I decided a long time ago in my early 20s not to let this obsess and absorb me and I have done a pretty good job of adopting this attitude even when it has felt like a masquerade. At times I have felt so so low and very sad especially when people have told me what a good mother I would make. There have been times of despair and loneliness when I thought that no man would ever want me, and when the 6 year relationship broke down I knew that not being able to have a child was the catalyst. That was a low, low point. I think I have resolved this issue in myself and my life is so wrapped in my husband, my home and my immediate family. I don't think that I am strongly maternal anyway, I love kids and all the niceties of them but the reality I am not so sure about! I have many friends in my age group who have made a choice not to have a family or are not in a situation to do so. It's hardly an unusual phenomenon in this modern day.

The baby thing is not the crux of AIS; the emotional and psychological issues are the real hearts of the matter as well as the physical characteristics. I used to wonder if I say I had been an athlete, could I have represent my country on the women's competition or would a blood test say I was male? East European shot putter springs into mind! When I heard about Germaine Greer's article, I was so disappointed that such a champion of women's rights could be so ignorant. Does she really think that I should use the men's lavatory and change in the men's changing room? How absurd! [see our Debates/Discussions page]

Life throws a lot at some people and you have to take the cards you are dealt. I know that this is just some old cliché but it is also pretty true. My challenge now is coming to terms with CAIS and being more open about it with my closest loved ones. I told a girlfriend about it recently, she had just assumed that there was a fertility problem with me. She was so nonplussed about it that I laughed. She could hardly understand why I had not spoken about it to her before. It did not change anything with us and she was right. I am who I am and what I am needs no excuses! (now whoever wrote that is poet!)

I am rabbiting on now so will go and will definitely join 'the club' but am not sure about meeting up just yet. It's the old chestnut - I am different but don't want to be, and meeting people like me will only reaffirm that I am different - does that make sense?

Elaine.