|My name is Sue and I have CAIS. I am now 51 years old.
I always knew from an early age that I was different but did not know the half of what was to come until I was 11 years old. I was born the middle child of five. I had an older sister and brother and two younger sisters. Both my younger sisters have CAIS. My older sister has three daughters, the youngest of which has CAIS also.
When my youngest sister was 5 years old, a lump was found in her groin (sound familiar?). She was admitted to hospital and the lump removed. A few months later, myself and my two younger sisters were also admitted to hospital for tests. We spent a week being poked and prodded around, and various blood tests were taken.
The biggest humiliation was when we were shown into a hall that was full of doctors, and bombarded with personal questions. Both my sisters found this unnerving and the talking was left to me. At that time my sisters were 5 and 6 years old, and I was 11. That experience scared me emotionally for life, we were made to feel like freaks although at that time none of us had been told the reason. I can never go into crowded places, without those memories flooding back.
We were sent home and my parents told me that although I was a girl, I would never be able to have children. As I was the biggest Tom-boy, that statement never really sank in. The subject was never brought up again. As far as I was concerned, I was a boy at heart and always did boyish things, cricket, football, climbing trees, war games, you name it, I loved it. I know I should have been male, I have never felt female, although I look more female than male. My childhood carried on in this manner, until I reached my early teens. Then came the inevitable, all my classmates were starting their periods, and I was left out. From this day, I consider my life to be a lie. All my mother ever said was that I would never have periods, and obviously no children, and not to tell anyone.
My growing years were a nightmare, I felt so ashamed, I always used to carry sanitary pads around so that I would feel "normal". I left school and home at sixteen, and started a job working with horses. This was my escape from reality, no-one new or had any idea that I was not normal. I never let anyone get close to me, never had serious boyfriends, well, there was one, but I found out to my horror and shame that I was too short (vagina) to have sex. I wish I had known that I could have had surgery, perhaps that would have made me feel more normal, but no-one ever told me it was an option.
Looking back, I must have been really lonely, but I threw myself into my vocation with horses, that in a way was fulfilling. This went on until I was 41 years old. One of my younger sisters had found a lump in her breast and had to have surgery and blood tests. It was found that she was XY, so questions were asked and the outcome was that I saw a gynaecologist for tests. His opinion was that I should have a scan so that he could see what was going on. I was told that I had testes and no womb and that I should have a gonadectomy, there was a danger of cancer otherwise. I agreed, not knowing it would change my life for ever.
At that time I was working with National Hunt Racehorses, I had a beautiful stallion to look after, also brood mares and youngstock, the latter which I used to prepare for the bloodstock sales, as well as breaking and training.
To me it was the perfect job.
After the operation, and after having three months off, to recover, I went back to work. It was a disaster, I had no strength, could not cope emotionally or physically. I had to give up my career with horses for good.
By this time, I was on HRT. I gained two stone in weight, had mood swings like I had never experienced, in short an emotional wreck. I also suffered severe migraine headaches, these would last for days on end. I tried various HRT drugs but they all had the same effect. In the end, I took myself off the treatment.
At the time of me giving up my horses, I met a young man with 2 Weimaraner dogs. He has become my best friend, in fact he gave me both his dogs, they became the foundation of my show kennel. He helped me through a very traumatic part of my life, for which I will be forever in his debt.
Early this year, I saw an endocrinologist, Dr Gerry Conway. If only I had seen him , or someone like him years ago. I asked him if he thought I would have been better if I had taken Testosterone replacement therapy, as I always felt I should have been male, and I know that having the gonadectomy upset my body's balance in more ways than I care to mention. I tried this treatment, but unfortunately it has not had the effect I would have desired. It seems so unfair, having the gonadectomy has feminised me , I wish I had not gone through with it. I wish that it would have been possible to have had a sex change, but the CAIS condition means that would not have worked either. I settle now for being intersexed. Nothing can change that, I get very depressed at times, but the good thing is I have some wonderful dogs, my own business, and my health.
Also this last year, I found this group via the internet. All of us are the same, yet all different. We have all had similar experiences, some of which have been awful.
I am so proud and privileged to be part of this group, I know that I have a long way to go, but I also know I have come on a long way. I hope my story can be a help to anyone who feels the way do.
If I had my time again, I would most certainly have refused the gonadectomy, and taken my chances on the cancer possibility. There is no doubt that I have come through this a different person, but now that I have found the friendship of the AIS group, I am on the way to becoming a stronger person.
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Last update: 22 January, 2014
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