I was born 47XXY and diagnosed when I was 15 years old by a paediatrician whom I was seeing for treatment of ADHD. Even before receiving a diagnosis I always knew I was different from my peers. Key moments of realisation of being different were around the onset of puberty or lack of puberty for that matter. During this time I felt confused about my sexuality and didn’t feel the same as other boys. I can also recall feeling more feminine, my genitalia being a lot smaller than my peers, having a very hard time with social interaction, suffering from social anxiety and lacking the ability to relate to my peers. Despite this, receiving that diagnosis still came as a bit of a shock, which intensified after my paediatrician told me some very negative statistics about XXYs, such as how I’d never make it to university or be able to father children. I felt depressed about the latter and in terms of making it to university, I had my heart set on proving my doctor wrong. While this was a lot to take in at the time, I recall feeling proud to be XXY, embracing my individuality and feeling a greater understanding of why I felt so different compared to my peers.
Following on from the diagnosis, my paediatrician advised my parents that I was to be put on a regime of hormone replacement therapy (HRT), taking testosterone. I remember trialling various types of HRT until eventually I was put onto Reandron injections every 12 weeks. At the time I was very immature, lacked self-awareness and was still in the process of figuring out my identity, thus I had absolutely no understanding of the implications that would result from taking HRT. In my mind, it was just another medication to add to the list of several others that I was made to take for ADHD.
Once I turned 18, I was no longer able to see my paediatrician and was subsequently referred onto an endocrinologist who would oversee my continual treatment. This is when everything started going drastically wrong. The endocrinologist I saw had very little understanding of the management of XXY, let alone the importance of routine blood tests. Over the course of 4 years, he continually raised my dosage of testosterone until I was taking Reandron every 6 to 8 weeks rather than every 12. By the time I was having the injections every 6 weeks, my testosterone was level through the roof and I started to experience dreadful symptoms including psychosis, severe anxiety, panic attacks, extreme acne covering my entire body, anger, aggression and an out of control sex drive. After putting up with these symptoms for almost a year, I reached a point where I couldn’t deal with them any longer. By a stroke of luck, I came across a support group for people with X & Y Sex Chromosome Variations after explaining my situation to the group they encouraged me to speak to a different endocrinologist for a second opinion.
Several appointments and blood tests later my new endocrinologist found that the level of testosterone in my blood was four times the maximum end of the normal range and the hematocrit (amount of red blood cells) of my blood was far higher than normal. As a result, I was in the early stages of developing a condition known as polycythemia, essentially thickening of the blood. My new endocrinologist stated that if I had delayed getting a second opinion there was a high chance that I could have had a stroke, or even died if I didn’t receive her help.
After receiving this news I was taken off testosterone completely and what followed was one of the darkest and most dreadful years of my life. The symptoms I experienced from having far too much testosterone only became worse as I started to go through withdrawals. It took several months of feeling horrendous before I felt normal again and it was over a year before my testosterone level returned to the normal range.
In the year following this experience, I started volunteering to help families, children and youth on the X & Y spectrum, this eventually led me to attend an intersex retreat where I met others just like myself, this was both an emotional experience and a rewarding one. Attending the retreat has since kickstarted my role as an intersex advocate and led me to where I am today, doing some amazing things and working with some incredible people.
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