Watching, Waiting

I was given a karyotype test later in life of 47, XXY, after undergoing fertility testing. I didn’t accept the original assessment of my having Klinefelter Syndrome, which the doctor read aloud from a medical textbook describing symptoms of physical traits that didn’t resemble myself at all. I filed the original diagnosis medical report away at home, and many years have passed since then.

I’m biologically intersex, and my gender is male; however, I’m neither a 46,XY normative male nor 46,XX normative female … I’m essentially a hybrid of both

I’ve been on anticoagulants since my mid-20s due to a series of medical issues of phlebitis and later a pulmonary embolism. I had every test imaginable at the time to find the cause of my blood clotting. The doctors were stumped, saying I was a medical mystery to which prescribing anticoagulants for the rest of my life was the best solution to an unknown diagnosis.

One day out of curiosity, I was looking up intersex (a new word to me) as it resonated with me and that people who are XXY identify as intersex… I soon discovered that XXY people can have a broad spectrum of health concerns, one of which is blood disorders. I decided to get myself retested to confirm that my karyotype was indeed 47, XXY. In December of 2017, it was reconfirmed by the Mayo Clinic Genomics Center in Rochester, MN, that I was indeed 47,XXY.

It is a disservice to XXY’s being diagnosed later in life… when I had the Lupus rash it wasn’t diagnosed at the time because my doctors didn’t recognize that a man could possibly get Lupus

Due to my existing blood clotting and being on anticoagulants, I’m not eligible for exogenous testosterone. I tried taking Arimidex an aromatase inhibitor that blocks the low natural levels of testosterone my body produces from converting to estradiol before the body has time to utilize it. I wouldn’t recommend this approach as I took it for several months, and although it did raise my endogenous testosterone levels, my lower levels of estradiol caused terrible side effects such as breast tenderness and pain, body fatigue and total loss of libido to where I’m now agender. I’ve discontinued the Arimidex and hope its effects will dissipate over the next few months.

It was quite the jaw-dropping, eye-opening experience being told the results of having all sorts of tests done, including bone density scans, lower abdominal and genital ultrasound scans to find undeveloped internal structures, mammograms, learning about Lupus, etc… never had I imagined that I’d ever have to think about these additional health concerns.

Too bad they didn’t know I was XXY at birth, but then it was probably for the best as ‘missing out’ has saved me from being medicalised like XXY kids of today who have no say in what happens to their bodies and are administered exogenous testosterone causing their young bodies to virilise. I’m searching not to become a man or a woman; I’m happiest just being me, an XXY individual, and I want to explore the many ways I can be just that.