I was diagnosed 47XXY at the age of 37, meaning I have one sex chromosome greater than Males (46 XY) and Females (46 XX). Although I presented as male, my body did not produce sufficient testosterone that would have allowed it to virilise in line with my peers. In that absence, my outward appearance developed along female lines. It was something that seemed obvious to all who knew me, yet strangely oblivious to me. I had never thought about my body in that context, but it appeared society most certainly did.
On diagnosis, the Endocrinologist told me ‘Testosterone would make me a man and bring meaning to my life”. Naturally, I jumped at the opportunity as all I had ever wanted was to fit in, and I knew it was not something I had ever experienced before. Being told I was sterile did not faze me in the slightest, not least because in some regards, I still saw myself as a child, albeit a 37-year-old one, and thus felt incapable of looking after a child when I was already struggling to look after myself.
Without any counselling to gauge if Testosterone injections were right for me, they were initiated at 200mg every fortnight, and within a matter of months, I had begun to feel very uncomfortable with its impact. In place of “meaning”, my phallus had overtaken my brain, and thoughts of sex and masturbation were consuming my every waking moment. My thoughts on sexuality firmly centred on me as a woman in a heterosexual relationship. I honestly felt I was losing my mind.
On mentioning this to my General Practitioner (GP), his view was to taper the dosage down to 100mg every seven days. Within six weeks, acne appeared throughout my entire body and was particularly bad on my upper back and chest, resembling enormous boils extremely sore to the touch that bled while I slept.
My thoughts on engaging in sex were now constant and were only slightly lower than my thoughts on suicide. On speaking with the Endocrinologist, he didn’t seem fazed, only saying words to the effect “it was an initiation phase, and within three to four years it would all be over, and I would feel better”. I remember telling him, “if this is what my life came down to, then I didn’t want any part of it and that I would eventually find a means to kill myself”.
Unwilling to give up and yet uncertain how to proceed, the Endo referred me to a psychologist who specialised in counselling Transsexuals. After my second visit, the Psychologist said I did not display the classic signs of someone who was Trans. She said I was suffering from severe anxiety through my use of Testosterone and recommended that I stop taking it immediately. On a follow-up visit with the Endocrinologist, he said there was nothing further he could do and wrote a letter to that effect to my GP. At a subsequent follow up with the GP, he repeated what the Endo had said, only adding I should seek out a psychiatrist and that he would write a referral. I never did find a doctor because I did not know the speciality I should be seeking. Although the last I saw of all those doctors, it was not the last of my troubles which had begun in earnest.
From there on life took a turn for the worse and I found myself really confused about my gender, my sexuality and a host of other issues one might expect of a teenager progressing through puberty, certainly not something becoming of a near 40-year-old, who had become accustomed to a life that felt different. My initiation of Testosterone turned all of that on its head and for the first time, I realised I was not the person others had believed I was, but who was I, what was I and where did I belong in this madness of blending and fitting? I had so many questions and yet no one in my immediate circle capable of answering any of them. At this point, my every waking moment and hour of each passing day was consumed with notions of not knowing who I was combined with the realisation this journey of self-discovery was not something that I could accomplish alone. Gender Dysphoria it being something I had never experienced before was now front and centre of everything.
In desperation and not knowing where to turn, I wrote a heartfelt letter to a Gender Clinic and told them of my journey, while they never truly grasped the seriousness of what I was experiencing, namely how XXY impacted me, they were nonetheless supportive and following several weeks of counselling I was referred to a psychiatrist who specialised in treating people with gender issues. I was surprised to learn he had previous experience with XXY and well understood the impact exogenous testosterone had on an individual who had not previously been exposed to it and more importantly an individual who wanted no part of it. My eventual diagnosis of Gender Dysphoria (Not Otherwise Specified) was reserved for people with an atypical gender experience and was often used to describe people born with Intersex variations who had difficulty adhering to standardised treatments of care. His subsequent referral to an Endocrinologist stated that estrogen should only be prescribed for a short time to counter the effect of the heightened anxiety I had experienced. He agreed with the earlier Psychology assessment of not displaying the characteristics of Transsexualism and was intrigued by my rejection of masculinity and of how I viewed my gender as both male and female leaning more toward the latter, it was an interest that saw him put pen to paper and write several articles, some of which were published in the Australian & New Zealand Journal of Psychiatry and related to XXY people who came to reject a medically assigned gender identity.
The experience with my NEW Endocrinologist was mind-blowing, in him, I had finally found someone who understood XXY in all of its diversity, I only wished I had seen him from the outset as it would have saved me from so much confusion and depression that brought me to the brink of ending my life. As with the Psychiatrist, he also shared a mutual understanding of XXY, informing me he had several XXY patients who had also struggled with Testosterone and under his guidance have been administering Estrogen for long periods of time. He paid little heed to the Psychiatrist’s recommendation of how Estrogen should only be for a short time, saying he was willing to leave me on for as long as I was gaining a benefit. Ten years on and with his support and guidance, I have finally become the person I had always known myself to be but had lacked the courage, vocabulary and life experiences in order to achieve it. Looking back, I can quite honestly say I have been to hell and returned and in that process have proven them wrong, that there is a life after testosterone one that’s far more rewarding than anything I could ever have achieved from heeding the original doctor’s advice and staying with the virilisation program.
A little over a year ago I happened upon the Psychiatrist who had listened so intently to my plight and saw to it that I was placed in safe hands that would eventually guide and make sense of who I was, he looked at me and said “you’ve arrived” I told him I could not have achieved it without his support, he replied ” I was a tough one to understand yet he was really glad to have experienced ME” to which I replied “so was I”