I came into this world on the 17th April 1956.
From what I now know, no one knew what to make of me. The first two weeks of my life I was a female. What happened after that is a complete mystery as nobody is willing to talk to me about it.
After two weeks it was in some way decided that I was not actually female, but male with ambiguous genitalia. This fact has been covered up by the entire family since that time, never to be spoken about, well not to me anyway.
The lies and deception that have occurred throughout my life have taken their toll on me, making me very insecure and unwilling to trust people especially those close to me.
I was married in 1982 to a woman who loved me for what I am and not what I should have been. Ironically I met her whilst I was in hospital following even more surgery. I fell in love with her the moment I saw her and knew deep down that she was the one for me. Despite the fact that she was engaged to be married at the time, I persisted in my efforts and it paid off. She is the only person who really understands me and what I am really like. She has helped me through the most difficult years of my life and has stood by me regardless of what I have been through. She has wiped away my tears and been with me through two very near nervous breakdowns, and one suicide attempt. I sometimes feel that I was preventing her from leading a normal life and that I have denied her things she would be entitled to if I were a "normal" Perhaps this is my insecurity raising its ugly head again and the feeling that those that I love and care about most will always do things to hurt me. I continue to punish myself for something that was not my fault but I blame myself for not coping with it better.
My years in school were a minefield of emotions and secrecy, even as a junior it must have been explained to the teachers by my parents that I could not stand to urinate, and that I was very different to other boys, as I suffered the humiliation of only being allowed to go to the lavatory when every other child in the class had been. I didn't understand what all the fuss was about as I didn't feel different to anyone else but was certainly made to feel that way. Why did they have to treat me like such a freak ?
If I thought that junior school was tough then I had the best yet to come. My time in the senior school was fraught with problems especially as it was an all boys school. I learnt at a very early age to cover up my problem and this was to prove necessary if was to survive the ravages of my next 4 years.
I fit into the macho image quite well, always being popular and making sure that I remained that way. I had a reputation for being a tough guy and able to hold my own amongst the best the school had to offer. This was my way of not allowing anyone to get to close to me in case they found out my terrible secret.
I was extremely precocious as a teenager, perhaps even before that, I had a great affinity with the girls that I knew and I now know that this was my female side coming out. This proved to be of great value in the years to come as it allowed me to get any girl I wanted, much to the disgust of the real machos who didn't stand a chance whilst I was around.
My first real girlfriend who I became intimate with was just so understanding, although I didn't know it at the time, she loved me for what I was and not what I should have been, I treated her very badly, perhaps because I was afraid to form a true relationship with anyone as those that I thought really cared about me had always lied and cheated and had hurt me very deeply and had allowed me to be hurt by others.
But I continued on my lonely journey through life, never able to confide in anyone in the fear that I would be seen to be a freak and an outsider, and yet I was always on my guard, perhaps in the hope that nobody would discover that I was so frightened and alone.
On the odd occasion when I did feel that someone was getting close, I would detach myself from them just to be sure that I did not give anything away.
Unlike American schools the British education system did not insist on showers and the like following games lessons, that was a great benefit to me as it meant that I was able to prevent anyone seeing me naked and discovering that I was not like the other boys.
The worst was yet to come, as at the age of 12 years I began to develop breasts, this devastated me as I was so into sports and so this made me withdraw and avoid all forms of activity that would result in me having to wear T shirts etc.
I found that I could not always avoid such situations and so devised a method of strapping that would hide my embarrassment, this was ok as long as I was not to take my top off. This sometimes happened when the teacher would insist that only shorts were worn in the gym, to avoid this situation I would hang back in the changing room until everybody had gone and then go somewhere else to avoid having to be humiliated.
When things became worse and my breast development continued, I requested for the first time in my life to see a surgeon, this was my only hope of being able to be a "normal".
I underwent the mastectomy at the age of 14 and even though I suffered intense pain at the time, it was my decision and so I felt a little more in control of my life. Even then nobody in the family would talk to me about what I was going through and how deep the family secret really was. All I wanted was reassurance that I was loved and liked for what I was and not something to be tolerated, with my outbursts of anger and frustration but not knowing why I was so angry.
I have two sisters and they were excluded from all things to do with my androgen insensitivity.
Following my mastectomy I was sent to see a psychologist, this proved to be very enlightening as I was to discover some years later. He did not have a problem with me but with my mother, who, "Was blissfully unaware of my condition and the problems that I faced in the future". Luckily for me that was the only time I was to see him during my teenage years.
I have been told by my sisters that my mother was extremely upset every time I went into hospital and that she thought that they were experimenting on me, despite her feelings she continued the lies and cover up that had gone on in the family for years.
I must have been hated by my sisters as I was the one that got all the attention whilst in hospital, taking my mother away from them both. My father visited on rare occasions only, it was as if he could not bear the shame of having a son that was not perfect. It must have been hard for them to accept, but the least I could have expected was some kind of explanation or an attempt to explain.
This inability to explain the situation to me was kind of easy to accept at first, and for many years, until I discovered that I had at least one uncle and a cousin affected by the same condition, my cousin lived in the US and had been subjected to the humiliation of John Money, at least I escaped that !!
My first recollections of surgery were at about the age of 6 when I remember being separated from my family to go into hospital. I didn't understand what it was all about, all I did know was that I felt a deep sense of separation and guilt, perhaps I had done something wrong that made my parents dislike me in some way, and this was why I needed to be operated on.
Although I should have commenced school at the age of 5 I can recall being kept back until my surgery was completed. This was a great worry for my parents, as they wanted me in school, I did not understand what was wrong with me as no one ever had the courage to explain.
Even after undergoing numerous amounts of surgery I was still unaware of why this had been done to me, the times that I cried and felt so alone and unloved, deserted by those that I trusted, not seeing my mother for what seemed like weeks, although she visited when she could I still had this sense of loneliness.
For years I could not spend nights away from home voluntarily it would cause me so much pain and heartache, and flashbacks to what had been done to me whilst in hospital.
My clinic visits were very humiliating as I remember, I would have to strip below the waste and have doctors poke and prod at me, all done with the consent of my mother, and what I now see as childhood sex abuse. What this has done to me long term I will never know, but it certainly made me extremely frightened of the medical profession, a situation that I am glad to say I have overcome, and I now work as a nurse specialising in anaesthesia. My own personal trauma has allowed me to show much more empathy to the patients in my care.
I cannot remember the exact amount of surgery that I underwent to correct my Hypospadias but I know that it was enough to keep me out of school long enough to be behind all the other children of my age, something that has stayed with me until this day. Who knows what I could have done with my life had I been given the same amount of education as all the others.
At the age of 21 I decided that I did not care much for my appearance, and so insisted on being referred to a surgeon to ask his advice about further surgery.
Unfortunately there were no surgeons that dealt with adults with my problem and so I was forced to attend a paediatric hospital. I first saw a paediatric endocrinologist who did all kinds of tests on me only to discover that they were not really sure what my problem was. The surgeon to whom I was referred was closely associated with Johns Hopkins in the US. He had obviously gleaned some amount of expertise whilst working out there and was so able to offer me the surgery . This worked quite well and luckily I did not lose any of the sensation, unlike others that I have heard about recently. Had I known of the real risks at the time I would not have undergone the surgery, although it was not as straightforward as I thought and I developed fistulas that required even more surgery and left me with the problem of strictures that require repeated urethral dilatations for what will probably be the rest of my life.
The greatest joy in my life was when I married in 1982, this was for me the ultimate compliment, and proved that I could be loved for who I was.
My wife was fully aware of my condition as I had never held anything back from her with regard to my problems, well, it would have been impossible to do so under the circumstances. She helped me to try to come to terms with my problems, and was the first person who ever got really close to me emotionally. But even then my insecurity was still there and I knew that I would lose her one day, either to someone else or because of all my problems.
Everything was just fine until the day that I was told that she wanted a child. She knew that I was unable to father a child but talked about insemination from a donor. This I agreed to after many hours of soul searching and tears, I don't think that I fully understood the heartache that it would bring, the nights lying awake thinking that if only there were some way to father my own child and not be just a surrogate father. However after many attempts and no pregnancy, we decided that we would go for the alternative, which was IVF treatment, this again proved to be very traumatic not only for my wife but much to my amazement to me also.
I hadn't realised just how much all of this was hurting me and making me feel like a freak, an outsider, a nobody with no part to play in this high tech world of baby making. We had no support from either of our families, as we decided not to tell anyone, more for my sake I suppose, but a decision that I will regret for the rest of my life.
The clinic that we attended were not at all interested in couples as individuals, they were more concerned with how many babies they could produce. When I was originally asked at the start of the artificial insemination treatment, what exactly my problem was, I do not think that they were fully aware of the extent of my infertility and the reasons behind it, neither were they interested in finding out. I was infertile, and that was that. From that day forward they concentrated solely on my wife and pushed me aside at every opportunity.
The final insult came when we received a letter from the IVF clinic, giving us a date for our first appointment, they asked for a sperm sample from me before any treatment could commence, this was like a huge explosion from deep down in my soul, it ripped into me with such force that I finally cracked.
I had not realised just how much all this was affecting me, being intersexual makes you push thoughts and feelings that may hurt you so deep that you hope you will never find them again. But this was the final insult to me, realising that the people who should have been caring and understanding were treating me like I didn't really exist. Sure we complained, and got the usual round of apologies, but no words or pretence at understanding could undo the hurt and anger that I was now feeling as the direct result of someone's total lack of empathy.
This was a turning point in my life as I now saw everyone in a different light, those feelings of insecurity that I had dreaded as a child came flooding back, I would have nightmares about the surgery that I had undergone, I would wake in a state of anxiety and total fear, not knowing why I was afraid. Deep down I was more afraid that I would not be able to support my wife through all of this, I knew that she wanted a baby more than anything else. I even asked if she wanted a divorce so that she could find someone to give her a child, what I would have done if she had taken me up on the offer I don't know?
My world had fallen apart and I had nobody to talk to, I know that Sue was there for me, but I thought that all she cared about was having a child regardless of how I felt, I couldn't bring myself to talk to her as I knew that she had enough to cope with without me causing her more anxiety. For me it was just like being a child again, having to deal with the pain and loneliness that I had suffered through my childhood. I thought I could cope with all this on my own, as I always had done, but I couldn't have been more wrong. The pain that I was now suffering was destroying my very being, tearing through me with such force that I never thought that I would get through, the times that I contemplated suicide were so many and so often, that it became an everyday occurrence, I would wake in a morning and think to myself, is this the day that I won't be able to stop myself from ending it all, and putting the final chapter to my hurt and loneliness.
I finally relented and gave in to the happy pills, sure they helped but nothing was going to take away the reasons for why I felt like I did. The pills could only make me reason a little better, and to make me push my feelings even deeper, in the hope that I could shut out the thoughts that were causing me so much pain.
I never thought I would get through but I did. Just as everything seemed to be going well again, we recommenced the IVF treatment, with great apprehension on my part, but I was determined that the people who had caused me to lose control were not going to win, and that I would support Sue no matter what they threw at me. How wrong can you be, the worst was yet to come.
On the day that we went in for egg retrieval the doctor who I must admit I did not like at all, and who I decided to challenge about his professional attitude, ripped into me like a whirlwind, not wanting to cause a disturbance I tolerated his attitude more for the sake of others than for myself.
The treatment didn't work and I felt that I had survived round one.
On the second attempt at treatment some months later, I was to discover a letter written by the doctor concerned casting aspersions as to the reasons for my outburst at him on our previous visit, he stated that "It must be difficult for a man who is infertile to be in amongst fertile men". If I thought that the other insults to me had raised fears then this was the ultimate, how I restrained myself from total insanity and the feeling that I wanted to personally castrate this excuse for a human being, but as always I took others feelings into account and repressed my own. Everything became sorted in the end, not to my satisfaction, but we received an apology from the doctor. This however resulted in us abandoning any further treatment. Prior to us commencing the IVF treatment we were given the services of a trained counselor. I poured my heart out to her on several occasions, only to find out that the information that I had given to her in confidence, had been passed on to the doctor with whom we had so much trouble. This has made me avoid counselors at all costs.
The light came on at the end of my tunnel, when my cousin contacted me from the US, he had the same problems as I did but was unsure exactly what was wrong with me. We spoke on the phone and all became clear, the family had kept us apart for 40 years, not wanting us to communicate with each other in case we started to ask awkward questions about the family. I decided to fly to the US in October of 1996 to finally meet the brother I didn't realise I had.
On our first meeting was like a huge weight had been lifted from me, I had found someone at last who cared and understood how I was feeling. This meeting brought back all sorts of memories, including the times that we had both met whilst growing up. I would like to think that we have become very close, and that we do not have any fears of each other. I have great admiration for the way that he has coped with his life, even surviving the ravages of the wonderful Dr Money.
The stories that I have been told about the way that this man operated have scared the hell out of me, and made me think just how lucky I was not to have been in a position to be treated by him, Although I have had a sample of his so called expertise, as the surgeon whom I saw in this country was a disciple of his and almost cost me my male image. My parents had gone to see the surgeon to get his advice about my future treatment, this was when I was about 22 years old. The words of my father to me on his return will stay with me forever. He suggested that my only way to continue my life was if I had a sex change. How can you change the sex of someone who had the potential to exist as both?
The words completely destroyed any confidence that I had left in my parents. I had struggled with the fears that they did what they could for me, and that my father had never really seen me as a son, but this was the final insult that made me realise that he had never really believed that I was male. And that he had tolerated me only for the sake of my mother.
I have kept in close touch with my cousin, and whenever either of us feels the need for a shoulder to cry on we always have each other. The sad part of all this is that we also have an uncle who is now in his 70s with the same problems, but who has had to go through life without the help and support that we now both have, it is sad that he will not open up to us despite the fact that he is aware that we all have the same condition. If we had been born to a life in a wheelchair or something similar, then we would have been allowed to communicate with each other, but as we were born with ambiguous genitalia then it was a taboo subject, something to be ashamed of and not talked about in our presence. If only we had been put in touch with each other at an earlier stage in our lives, then we could have found so much support and reassurance between ourselves.
I have been through so many difficult stages in my life that it is not always easy to remember the nice times, just the trauma and heartache that I was forced to suffer because of the fear that the family had of being discovered. The main instigator of all this secrecy was my maternal grandmother who had such a hold on the entire family that the secret remained just that, a terrible secret.
During my quest for a diagnosis and the truth, I was being treated by an endocrinologist who suggested that we test the entire family for traces of the gene, this was to prove extremely difficult as the family were told to never reveal the truth. Unfortunately my own mother died in 1989, but I know that she would have been willing to be tested, my only other hope was for my Auntie, the mother of my cousin who I knew to be affected to be tested. She agreed at first until my grandmother found out about what I was planning, after that I was not allowed to speak to my aunt under any circumstances, and so I was avoided by the entire family, labeled a trouble maker. All I ever wanted was the truth.
My younger sister who has two children was my next concern as I was unsure of the carrier status of the condition, however she proved not to be a carrier for the gene and so there was no chance of either of her children being affected. This was a great weight lifted from my shoulders, as I felt partly responsible.
I just wonder how many more relatives I have with the same condition, and how many of them would welcome a shoulder to cry on, instead of all the secrecy and shame that the family have placed on our predicament. The stories that I have heard about the secrecy are really frightening and it makes me wonder that if I was given more support as I was growing up and had the condition explained to me, or at least as much as they knew, then maybe I would not be as screwed up as I am now, and would not have had to go through the living hell of it all. The thing that screwed me up more than anything else was the fact that every body else was aware of the condition except for those that were affected, and who it concerned the most.
I am still very angry at all concerned for there lies and deception, the instigator of all this, that person being the grandmother. When I challenged her about the problem she denied that anything of that nature existed in the family and also informed me that my mother thought I was nothing but trouble ever since the day I was born. As you can imagine, those words sank really deep, in fact I don't think that I had ever been hurt so deeply, the fact that this was said following my mothers death, and so could not be queried. I suspect that this was her own way of getting me to be silent about the whole subject and to detach me from the family.
How wrong she was, it just made me more determined to find out the truth. It was by accident that my cousin contacted me as he was on the same quest and needed information, the grandmother would turn in her grave if she knew how close we are, despite the efforts of the family to keep us apart. They remain uneasy when the two of us are together as I am sure that they feel embarrassed just in case we start to ask awkward questions, and demand the answers.
I have at last found the one person in the whole family who can really understand what it is like to be an intersexual and to have all the problems that go with the title.
How much surgery I have had over the years I will never know, I know that I had 15 general anaesthetics one year, that almost finished me off I could not see an end to the suffering. I still have nightmares about one surgical procedure, that resulted in me being paralysed on the operating table, but aware of what they were doing to me, that has stayed with me ever since.
My countless operations were to play an even bigger part in my life than I expected as they had begun to affect my work, in as much as I would have to take time off. At first it was not a problem but as time progressed my employers grew tired of the situation and eventually I was forced to resign my post due to increased humiliation and victimisation by my manager. It became common knowledge within the department that I was having trouble and most were aware of why I was having time off as the manager made a point of telling people.
I thought my big break had come when I got a job at a private hospital, and I could work in my chosen career as an Anaesthetic nurse, but no it was again to go wrong for me. Again I had to go in for surgery but prior to this I became in more and more pain plus my marriage was failing rapidly.
I attempted suicide with paracetamol, and at the time I wish I had succeeded, as it was a way out of all the suffering I had endured all of my life. It would also have freed my wife from all the torment of having to cope with me and all my problems.
I have at last got the help that I have needed all of my life, but the one person that I wanted to share this with I have now lost. I will never get over the fact that I have lost the one person that really cared about me, and loved me for what I am.
I was devastated that my marriage had failed, I didn't know how I would cope without Sue by my side, but I could understand that she could not take anymore and needed to be free from me and all my problems.
Since the disasters in my life unfolded, I have become involved with a very special group of people at the AIS People Club. There I have found so many new and wonderful friends, who understand what it is like to have a condition such as AIS. We all provide so much support for each other, especially at times of stress and pain.
I didn't think I would ever be happy again, but through the club I have met a wonderful woman who also has AIS. The day we first made contact, I knew in my heart that I had at last found the person who I truly love. She is kind and understanding with so much love locked up inside her, that I intend letting out eventually. We have grown so very close in such a short space of time, that my head is still spinning.
There are problems with our relationship, as there are in all relationships, but we will overcome these difficulties together and eventually make the perfect couple.
She is teaching me to live again and to overcome the hang-ups I have with my AIS, which is something I have to do if I am to move on in life.
Without the support group I would not have found such loyal and loving friends, who support each other regardless of the problems, but more importantly I would not have met the woman I love.
I have reached a point in my life where I feel capable of helping others with AIS or similar problems. I hope to be able to use some of my experiences, good and bad, to help others move on in life.
We have feelings too you know?
Not that the medics care
They couldn't care less about how we feel
As they poke and prod and stare
A decision is made that will shape our lives
They like playing God you see
They think that surgical correction
Will be all that we will see
The decision is made when we have no say
They're doing what's best for the child
If only they knew what pain they cause
That will one day drive us wild
Why don't they leave us all alone?
Until we have a choice
The day when we discover
That we actually have a voice
To be a boy or be a girl
A sister or a brother
A choice that should be made by us
And not by any other
We have a right to be who we are
T be a husband or a wife
The choice is ours for us to make
Not a surgeon with a knife
Unless a case of life or death
Please try to leave us alone
Until the day when we can make
A decision of our own
The start of my life was confusing
Is it a boy or a girl they all cried?
We're not sure looking down here
It would be two weeks of waiting
Before the truth became clear
The years of pain started too soon
The things I had to endure
The endless surgical procedures
They made me so insecure
I hated being examined
Being treated like a lab rat
If only they realised what they were doing
But nobody cared about that
They stripped me naked
They stared poked and prodded
I've never seen one as small as that he said
And all the others nodded
I soon became able to detach myself
From all they were doing to me
I would drift off into a world of my own
Pretending I was by the sea
I hated my parents for not protecting me
From not preventing the pain and abuse
I pleaded with them to stop the pain
But my cries were of little use
The pain doesn't matter now
Not even all I had to endure
I've now found AIS People
Nobody could ask for more
"The forces that affect our lives, the influences that mold and shape us, are often like whispers in a distant room, teasingly indistinct, apprehended only with difficulty"
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Last update: 22 January, 2014
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