The only way I can describe what it’s like living with Klinefelter’s Syndrome/ 47xxy is before my diagnosis and subsequently receiving hormone replacement therapy, which I will talk about later in my story.
I was born in 1961 in East Sussex, England, and apart from what my mother has shared with me about those early years, I cannot recall very much myself. She said I was a quiet and withdrawn child who did very poorly in school and that teachers described me as being slower than the average kid. I can recall difficulties with reading writing, and I continue to struggle with some of those to this day. I had significant issues paying attention and remembering what the teacher had said. As an adult, I discovered Inattentiveness (ADHD) was common amongst XXY’s, but I never had the resources to pursue a diagnosis which is a shame because it would explain so much about those early days. Because I was could not keep up with the other kids in my year, I was moved to a school for ‘special’ children. This school was better structured for me, and I became good at Woodwork and playing Cricket, though oddly enough, not football, which is strange for an English person. At this school, I developed a peculiar way of working out the answers to Maths questions, and even though my answers were always correct, the teacher always marked it wrong because I had not worked it out the way she had described it.
At age twelve, which is around the age of normal puberty, I had an overwhelming desire to dress in girls’ clothes and to feed that urge, I resorted to pilfering them from washing lines. I continued doing this until around the age of fourteen when I was arrested by an off-duty police officer walking his dog in the woods near my home. I was taken to the police station and formally charged. My recollection of this is vague, but I vividly recall being taken home by two uniformed officers who informed my mother of everything. After the police had left, my mother dragged me upstairs into her bedroom and started pulling out all her clothes, shouting and screaming, saying things like, you are a boy; boys don’t wear girls’ clothes. It was a very traumatic time for me and accumulated with my parents bringing me to see our doctor, who described me as a transvestite and said that I would most likely be a crossdresser for the rest of my life. My father wanted the doctor to give me a pill or something to make me normal because, as he put it, I will have no gays in my family.
Oh, how little did any of them know? My mother informed the school (God knows why) I can only assume she wanted them to keep an eye on me. A few weeks later, I had to attend the local hospital where I was asked to perform activities like walking up and down the corridor when I overheard the doctor telling the nurse that I was very effeminate in the way I presented and walked. Sadly, at no point did anyone speak to me about how I was feeling or why I liked dressing up. I was discharged and left to get on with life as best I could, but I could never forget just how happy I was when I dressed up.
When I was fifteen, I started going out with a local girl by the name of Susan, that lasted for about two years until she moved with her family to live in another city. I left school when I was sixteen and began work as a Kitchen Porter at the local university. I stayed there for a couple of years and then moved on to work in a Paint factory, where I remained for roughly one year. I didn’t mind this job, but the supervisor disliked a couple of us and often tampered with the colours, making us look foolish. Not to be outdone, we decided to get our own back and mixed up a paint colour just for him and bathed him in it. He was a beautiful shade of green from head to toe. Of course, we all got sacked, but we never regretted teaching him a lesson.
In my late teenage years, I got mixed up with the wrong type of people. I committed criminal offences, breaking into factories and schools, and around about nineteen, I was arrested and charged with fifteen burglaries. I was given several months of community service, which was done on a Sunday back in those days. I was a bit cocky back then and told the judge that I refused to work on Sunday because of my religious beliefs and asked if he could give me something different. He said, how would full board and lodgings with daily activities suit you? And I said great I could do with a holiday, he then sentenced me to six months imprisonment in a detention centre for young offenders, I almost fainted. To make matters worse, I was only there for a very short while before they moved me to an adult prison where I was kept in isolation to protect me from the other inmates. Thankfully, I only spent six weeks and five days locked up and managed to make it home before my twentieth birthday.
Not long after I took an interest in Citizen Band Radio (CB), I stuck an ariel on the roof and started chatting to people across the airways. It wasn’t long before my mother got annoyed for keeping her awake at night because I was on it almost 24/7. It was my cue to move out and find my own place. I managed to find a room to rent and stayed there for two years before moving in and out of several places like a nomad, and there was even a spell of homelessness. After that time, I managed to secure a studio flat, and not long after moving in, I started crossdressing again. For most of my twenties, I was in and out of jobs, moving from one place to the next; it seemed I always struggling to fit in. When my thirties came round, I found myself living at a friend’s home; well we called it the outback as it was a large storage area that he used to store all the bits and pieces required for his upholstery business. It wasn’t the best, but it was better than being in an old dive or even homeless.
At the age of thirty-five, I moved into a council flat and not long after, I started crossdressing again. I also restarted my hobby of CB Radio and, over time, had a very tasty set-up. Three multiband radio burners with more power output and a thirty-foot antenna. My handle was “The Bachelor” and I beamed across the airways, I was in my element for the first time in a long while. Chatting with others helped me loosen up and speak to people about my struggles, especially crossdressing. I thought it best to share this with close friends before broadcasting it on the airwaves, as I didn’t want any surprises. I found the majority of those I told were okay and supportive; some even suggested I might be gay, even though I never thought that of myself, but there was one guy who gave me a tough time and just would not let up. I didn’t fully understand why I felt the urge to dress in women’s clothes; I just knew I felt better about myself when I did; mind you, it wasn’t without issues, especially when trying to explain it to a woman I was dating at the time.
I was diagnosed with Klinefelter’s Syndrome at the age of thirty-eight, and the doctor also noted severe Osteoporosis and prescribed 250mgs of Sustanon (Testosterone) this was administered every four weeks. For the Osteoporosis, he prescribed Fosamax and said if I did not adhere to the treatment, I could end up in a wheelchair before I was forty-eight. A couple of months into treatment, I began having all sorts of issues like premenstrual syndrome (PMS), feeling sad, increased anxiety, irritability and socially withdrawn. The doctor should have realised I was struggling with T and eased off, but, typical of doctors in what they see as someone with an androgen deficiency, instead they increased the frequency. A few months went by, and those symptoms had exacerbated further, which should have raised another red flag but, it was met with the same response. In all honesty, it seemed they were using me as a guinea pig to see when I would turn my attention to having sex with men, as this was a question the Endocrinologist asked me at every appointment.
On that regime, it wasn’t long before I started feeling things I had never felt before; one of them was an insight of what it meant to be a man where every time I looked at a woman, I was mentally undressing her and having sex. Yet, I also had a strange feeling I should be more like them. At this stage, my cross-dressing habits had become uncontrollable, and I hated going out because I was frightened to crossdress in public which made my life difficult. On top of this, I began questioning my gender, and why I didn’t have breasts like other women, I remember thinking, ‘if this was what it was like to be a man, then I didn’t want any part of it. My libido was out of control; one woman I dated ‘was known as the local bike’, and I would go to hers every Friday till Sunday, and we would be at practical non-stop. It only ended when she said she was pregnant; this was about the only time in my life that KS paid dividends because I knew I was sterile, and so I asked her who else she had been sleeping around with. The shit hit the fan, and I got accused of being a typical bloke shirking my responsibilities. Let me say she was not a happy lassie.
I eventually stopped taking Testosterone because of how it was making me feel and how I had become so irritable with outbursts of rage for little reason. I sought out psychological support, which wasn’t easy to find. It would never have happened if it had not been for the LGBT community. There I told them how I was feeling; that was the first time I had ever told anyone. I remember the lady telling me, ‘I had it bad’ but never adequately explained what she had meant by that. In the years since I’ve had that repeated to me on three separate occasions, none of them has ever seen fit to support me in realising this. In that absence, my body is left reeling from the partial virilisation of what doctors did to me with their careless administration of Testosterone. All through that, I was never asked if I wanted to be a man; they just presumed that is what I wanted when deep down in my heart, I now realise I was never a boy, to begin with.
Somewhere in amongst all that, I found myself at the Welfare Advice Centre using the computers trying to find answers when this woman behind me says ‘you won’t find what you’re looking for on that thing’ to which I turned and said what would you know, she said ‘she was born with KS/47XXY’, and I said that’s impossible you’re a woman, she said ‘she hadn’t always been a woman’. I was amazed as this was the first time I met a female XXY. She was everything I had always wished for myself and seeing her inspired me to deep deeper and maybe one day realise this for myself. She told me her name was Geraldine and the steps I should take to be like her. Over the next few months, I learned so much about life’s diversity. Mind you, there were some things I wish I had never discovered but, when the main search field is ‘crossdressing’, I should have realised it was going to return searches that were on the perverted side and not related to what I needed. Having been awakened by all of that, I find it odd that in today’s society, people are offended with a trans person using a public toilet when there are far, far worse things happening that people are all too willing to ignore.
Anyway, enough of all that, I had to move from my flat because a neighbour got it into his head, I was a woman having a sex change. After all, I had been through, can you imagine that? You can only laugh. Before Testosterone, not only did I have female characteristics, but I also looked female, and my voice sounded female, so I suppose it was perfectly reasonable that someone would make that assumption upon hearing I was taking Testosterone. I wish someone had pointed that out to me before I ever took Testosterone; then maybe I would not have been so afraid of going out dressed in women’s clothes. Even after years of Testosterone, I get mistaken for being a woman. The problem is now I no longer have a feminine voice, and I must shave every other day, which I never had to do before and something I wish I didn’t have to do now.
I eventually took Geraldine’s advice and got a referral to Charing Cross Gender Identity Clinic, where I was officially diagnosed with gender dysphoria. Oddly enough, instead of prescribing Estrogen, they again recommended Testosterone as if that would somehow fix all my problems. This time it was testosterone gel of 5mgs daily, which I tried, but I quickly reverted to all the old negative feelings, and so I stopped and swore I would never take it again. The idea of taking Testosterone or any drug is to make you feel better but, I never experienced that with Testosterone; it just made me feel confused about myself. On the verge of giving up, I discovered a helpful doctor’s practice, and they issued me with a second referral for Charing Cross. This time I was successful and came away from that appointment feeling I was on the crux of being reborn. Access to Estrogen came with conditions, namely losing weight that I had piled on with Testosterone and secondly that I had to stop smoking. On my follow up appointment, the smokes were gone, and he could see signs I was trying to lose weight, and just like that he prescribed Estrogen
Now that I’ve started seeing the Endocrinologist at the Gender Clinic, he has begun to unravel my health issues. He discovered that I was misdiagnosed with Osteoporosis. I never had it, and to think I endured Fosamax and the nasty side effects of it for all those years because some idiot GP couldn’t be bothered doing the proper workup. Instead, he relied on the outdated information he learned in medical school of how KS and Osteoporosis are related. I ought to sue them for incompetence. The fallout from being misdiagnosed has meant every doctor I saw since that time has insisted on me using testosterone regardless of its impact on my mental wellbeing. On the back of what the Endocrinologist had said I built up enough courage to confront the GP and ask him for my medical records, but all I got was a two-page summary. One mentioned the KS/XXY diagnosis in 1980, and the other was filled with misinformation about my diagnosis.
It stated diagnosis was through a sperm test but anyone in their right mind would know it was only possible via a karyotype. I have no recollection of ever giving a sperm sample. Excuse my way of putting it; one would remember going to a doctor and shaking the hand of the unemployed and getting it to spit into a wee pot thing. It never happened. I don’t know whether to laugh or cry over what can only be said is a complete shamble. If that wasn’t bad enough, the GP continued to share false information, telling the Endocrinologist I was diagnosed with XYY. At my last appointment via Zoom, I nearly fell off my chair when the doctor told me that. If I didn’t know any better, I would swear they never look at my file when writing my referrals, and because of that, specialists continue to be misinformed, and I continue to be mistreated.
So, living with Klinefelter’s? Well, for my first 38 years, I knew nothing about it, so I can’t say what it was like living with it. Yes, I was weaker than other men and didn’t have the stamina they had, but I certainly didn’t feel at odds about myself, at least not until I started taking Testosterone. If my experience is anything to go by, then I would suggest if longing for masculinity is your thing, then go ahead and administer T as it will rank as one of the best things you have ever done for yourself. If, on the other hand, you have grown accustomed to the person you are and don’t wish to alter that in any way, then you should avoid it like the plague. And if you have any inkling of femininity in your body or, if like me, you have administered Testosterone and it has exacerbated those feelings, then you really ought to be looking at finding ways to make a switch to Estrogen and see where that takes you. From the experiences of XXY’s who have travelled that road before me, they say their bodies revert to the days before T, before all the trauma and for the first time, their bodies are in sync with their minds. How you proceed or not is entirely in your hands, you are the captain of yourself.
At a subsequent appointment, I am referred to Dr Leighton J Seal, the GIC’s Endocrinologist. He thinks I may have Cushing’s Syndrome, but the tests came back negative, so he had me do an MRI scan of the Pituitary Gland that also didn’t find anything untoward. I’ve always felt my weight gain was related to Testosterone; before using it I only weighed ten stones, but within a couple of months, I dramatically piled on the weight. It didn’t seem to matter how active I was, and I was very active in those days. I walked everywhere and never used public transport. I even took up cycling, hoping that would help, but I had to stop doing that because of aching knee pain. Instead, I put extra effort into the activities I could do. I continued my daily walking while holding down a physically demanding job in the construction industry, but, regardless, of all that the weight continued to climb significantly, especially around the abdomen, while the rest of my body seemed okay. Increased weight in the belly is a sign of Cushing’s but seemingly unknown to the doctor; it is also an indication of Klinefelter’s?
As for my journey ahead, I am not yet sold on the idea of genital reassignment surgery. Given my age, it would be a big undertaking, and besides, over the last five years of using Estrogen, my sexual identity has changed. I am now more at one with my female self and continuously think of engaging in sex with men, but given my XXY status, I do not view that as a homosexual act because I know I am not gay. It’s funny how the mind works and even more so when you toss in XXY, Estrogen and a life history of crossdressing. I guess, as, with everything else in life, the only way to know for sure is to try it and see how it pans out. Watch this space…….