Klinefelters syndrome & micropenis and no testicles at birth

[Mrashamed13]

Ok bit of a long story of my life ..... you have to understand what it takes for someone like me to share this with the world ........ I grew up in a children's home where I should of had many medicals through out my life considering I was ther at 1 yrs old until I was 18yrs old and nothing was done about my issues .......forward on after going back to rekindle my life with my birth mum and dad I found it inappropriate to bring up my health concerns with them ......only spent 4yrs with my dad before he passed away- strokes then 3 yrs later my mum passed away .......I then took myself after plucking up the corouge to see the doctor ......he sent me to see a endocrinologist and after many tests (ultrasound scans, ct scans, mri, prostate and blood genetic testing and being felt by every doctor I seen ) I was diagnosed with klinefelter syndrome xxy genotype along with a micropenis ( 1/2inch flaccid-1.5inch erect) and the scan results came back as I was born with no testicular or epididymis tissues found in scrotum, inguinal canal or stomach area although I did have a scrotum sack it was just empty.......I asked for further help ( like surgery called phalloplasty) they said they cant help me withany surgery but did give me Testosterone replacement treatment but 15yrs on that's doing nothing for me, I went to my doctor again and he said maybe urology will be able to help after going back and forth from 1 specialist to another and 6 years on I've been refused all help from NHS in my own country of Wales UK....... now I've done research again there's a NHS specialist hospital in London who deals and cares for people who suffer micropenis and my doctor is currently trying to get me there for treatment........and I can clearly say now after speaking to doctors in that field if I received testosterone and growth enhancement during my puberty years I would feel a lot better and maybe there would've been a chance of my penis growing normally..........but since that time has passed there is no chance other than surgery

[Norwich1 Moderator]

Hi. Such a sad story. Treatment at a very young age might have improved the severe form of primary hypogonadism that you have. At this time, TRT is likely to be a lifetime treatment. I agree that surgery looks to be the only option to give you a normal sized penis and the appearance of having testicles.

[myproperty in reply to Norwich1]

You’re a beautiful xxy human being.! There’s absolutely nothing wrong with you. You may be a beautiful intersex person who doesn’t neatly conform to a traditional m./f. definition. There’s nothing about you that needs to be “fixed”. Let’s Love your beautiful uniqueness. “Different” doesn’t need to be fixed. “Different” needs to be loved & celebrated. Your incredibly hard life’s journey probably helped give you the strength to survive & carry on. A “micro” isn’t a mistake; it’s variety. Luvya.

( from Virginia, U.S.A.)

[Norwich1 Moderator in reply to myproperty]

I think you meant to direct this to the OP!

[Mrashamed13]

Also this might sound weird but it says on all scan reports that I don't have testicular or epididymis tissues anywhere in my body........could I still produce seamen (because I do .....not a large amount maybe a small teaspoon full ) also im on Testosterone gel 162mg daily and still struggling to have or keep a erection, have no morning erections, have trouble urinating after sitting for a 1hr or so, urine splits into 2 streams ( on usually in the toilet the other over the floor, me or anywhere it pleases) or it comes out so fast it sprays everywhere ........I have klinefelter syndrome which makes me tall -6ft 6in with large body frame ......I also suffer with a blood clotting disorder.......venous insufficiency.......chronic ulcers when open you can see bone ......and 3 years ago a cardiac arrest and had a ICD Implanted in my chest......3 shocks a year later in 24hrs ( feels like being kicked full force in chest) .....now I suffer sevre anxiety everytime my heart beats a little to quick ......another cardiac episode earlier this year ( lucky no shock) This might offend some people but this is me ......I WAS BORN essentially MALE ( penis although small and a scrotum and apart from being empty) IM STILL MALE ( although genetics say I have both xxy genotype) I GREW UP A BOY AND NOW A MAN WITH A BEARD ( that's took 7+ years to grow 2 inches long ) But all I can say is thank you all for not embarrassing me further and for all the kind words

So I'm still plodding on to try and get help

[BexyBoy]

I've met a person once with Klinefelter's and it seems that self-acceptance is certainly a good aim. They were able to declare and even educate people he cared about as to what XXY means and how it affects you physically and emotionally. Cruel people will call you a freak, caring people will have a genuine interest in helping you live with your bodily state. Ditch the uncaring ones and stay with the caring ones. Chromosomes can't be changed. For having pleasurable sex, there's plenty that can be done to please a partner that doesn't involve penetration.