Story about Klinefelter Syndrome .

My Diagnosis and After

Feb 26, 2016


At the age of 40 and after getting health insurance, I decided to have a full medical checkup on January 4, 2010. My doctor examined my body. After examining my testicles, he asked me how long I have had small testes. I replied, "All my life." He then asked my if I had ever heard of Klinefelter Syndrome (KS). We talked a while and he felt strongly this was my condition but ordered bloodwork and urged me to read up on KS.

It was a good 3-4 weeks before my follow-up appointment so I was struggling a lot from the initial meeting. He ordered more blood work to narrow down the possibilities even more and a few days later he felt strongly this was my condition but encouraged me to get a genetic test done. I did (that was money out of my pocket) and on February 18, 2010, my doctor phoned me the news that I'm 47XXY.

In the beginning, my testosterone (T) registered 150 on a "normal" scale of 300-1200.  Started T on March 6, 2010, beginning with Androgel then moving to a cheaper alternative--compounded cream. We slowly increased dosage to where I feel great most of the time which is about 650. [T scale: 300-1200]

I have gone through quite a depression after my diagnosis. Seems to be fairly normal for some folks who get diagnosed later in life. I've never wanted kids of my own so that wasn't my issue. It's just the fact that I'm different than everyone else and I always had wishes for my body that I now realize are not possible.

I'm learning to be grateful for my body and the smallness of my bits but it is difficult at times. What's sometimes helpful is to realize that most folks don't care what I look like. I'm grateful to have friends who I like and they like me for who I am not how I look (not that they ever see my bits).

I don't struggle with my gender per se but I struggle with shame--years of low self-esteem. I'm finding my way out of that. I'm thankful to be a high-functioning person with KS as I'm successful in life and have much to be grateful for.

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