Hello All...
My wife and I have been trying to have babies, one of the tests during fertility treatment is karyotyping, during this I was diagnosed as having a mosaic Klinefelter's syndrome.
My childhood and development make a Whole lot more sense now, even at 40 years old!
I am tall, 6'3" regular size penis, smaller than average testicles.
Never really did fit in at school, (boys only), being tall you are expected to play all the sports, played some rugby, didn't really have the upper body strength etc... did have the speed (100m). Bisexual.
I had a girlfriend late at 19, and lost my virginity. Second girlfriend later got married to another girl, so there might be some lesbian hormonal attraction there. ;-).
Repeat tests showed the same (Karyotyping) using a maximum of 30 cells. 46XY/47XXY
But further tests I had performed privately using ~800 cells revealed a complex mosaic.
So I am actually 46 XY / 47 XXY / 46 XX / 48 XXXY. (~73%/20%/6%/>1%)
I also got myself sequenced, which was also an eye opener. The usual phenotype for klinefeletr's is some mental retardation(full XXY), but I am smart, a professor, and have an IQ of anywhere between 142 and 161, depending on how it is measured. I am lucky, so very lucky, and have some extra copies in the right regions.
So yes, that's pretty messed up.....cool, but lonely, as I am the only one ever described, which doesn't help my endocrinologist.
While being tested, it was also reveled that my hormones were way off.... Like really a lot.
Super high estrogen, that kept on increasing...
I had actually started growing breasts, in like 3 to 4 weeks I had a B cup.
More, and more tests, the urologist I had just kept going.
No treatment though, and I was having panic attacks and depression, massive insomnia, foggy mind, dizzy spells.
Further tests showed an increasing HCG level. (bad) + more T.
Ultrasound showed bilateral lesions in my testicles, and an MRI showed gadolinium positive focus in the right testicle. More MRI, CT.....
I changed urologist, and he immediately ordered a bilateral radical orchiectomy.
It was mostly my choice, the right would have to come out anyway, and I didn't want to mess around for years while the left one shrank, and became cancerous, while I fort various TRT meds.
They were removed.
I can't describe the feeling of comfort, safety, well being, just days after surgery. I slept, the panic attack and depression disappeared. I felt like I was becoming what my genes wanted me to be.
The balls are gone, and I am now starting testosterone therapy, lowest patch available, we will see. My endocrinologist will most likely let me take estrogen as well.
I learnt during the year of up and down T and E, that I actually like an E dominance. My brain is immensely clear, I am calm, libido is lower, but not gone, and I could still get erections (just).
I am not talking SRS here, just a bit more feminine, softer skin, calmer, no one will notice....
My wife agrees, she says that I have actually been cycling for years, mood swings, bloating etc..
I love her so much, and she supports me so. We have banked sperm, and are still moving forward with ICSI IVF treatment, so a baby soon with any luck. Can't wait.
I have rapidly become aware of what intersex is, and what it means to be intersex. My HR at work knows, but that is all. So I havn't come out yet, just not brave enough at the moment.
One thing I do know is that the medical profession doesn't know ->-bleeped-<- at times, but at other times Dr's can be very caring.
Although I had the orchiectomy, no cancer was found, and my Dr, had put down Klinefelter's as the reason for surgery. This is clever, as it does not give me a pre-existing condition, and you can not be refused insurance or treatment for genetic reasons. But you can for cancer.
Take note my intersex friends !! ;-).
Cheers.