What does it feel like to have Klinefelters' syndrome?

Edited , 66 users are following.

Another contributor wishes to discuss what it feels like to have Klinefelters' syndrome, so I thought I'd start a discussion on that topic, see what comes of it?

I'd like to be able to choose XXY as a place to put this discussion, then we can chat about what it feels like to be fat, or to have gynaecomastia, or to be sterile, and any other disease associated with being XXY.

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  • Posted

    It's very stressful as you have fat around waist and even with gym can loose it, I am sterile I wanted children when I was young sometimes I feel like ending it all. I feel like am not human it's stressful and sad
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    • Posted

      I only in the last few years have been able to gain weight, spending most of my life skinny, so now I like that fatty middle bit, I look just like many other men my age, I fit in just nicely.  Now that I have a family being sterile is a non event.  The lesson I learned was to sacrifice everything to gain a family, and if then I still did not have a family I can say truly I have given it my all and failed.

      The most devastating feature of being XXY, the continuing saga,  is I just don't fit into society at large.  I fit in as well with XXY guys as I do with everybody else, not at all.

      So I have given up trying to fit it.  As I determined when I was 16, it is everybody else with the problem, not me.  smile

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    • Posted

      i am xxy male born,  80% woman and 20% male, i have fat around wait and even with gym can loose it, i dont want to try any hormones or steroids or vitamins to loose my fat they all damage the liver, my brain works both ways of thinking as a female and as a male and i use which one is the right decision to move on, i havent done any school for computers or any others skills, in the matter of second i can resolve any problems or do any skills, i done the test about my brain and i find out that my iq level is too higher 220, and this explain a lot to me, everybody is normal and i am not, i dont care i live my life full on resolving problems of normal people that needs my help, it is very sad that we cant have any children but i enjoy my life full on.
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    • Posted

      Dont end it ! You are special. Adopt a Son or Daughter. I'm 50 now. I had a Son when I was 39. He is not mine biologically, but I'm his Dad. I love him. I use to think I was less of a man because I couldn't have children. That is all BS. If you can love others then you can be a Dad. Period. Quit judging yourself, and living in misery based on your disability. We are much more than our losses.

      Suicide is not the answer. I understand that pain too. A close friend of 30 years just inflicted that on us, there is a pain that he csused me and his family that was unbearable. Its a pain that is difficult to heal from. I dont recommend it.

      Feel free to comment.

      Greg

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    • Posted

      Well that's curious.

      I'm XXY, I'm 100% male.  I have an inactivated X.  The genes that avoid inactivation on the inactivated X (I'm not supposed to know this stuff as the medical profession likes to keep us ignorant) are, and are not, the same genes that avoid inactivation  in females, because females have random X inactivation and XXY males have skewed X inactivation.

      There has to be some genes that avoid X inactivation or there'd be no genes controlling X inactivation, is one theory.  The other theory is that if all the X's genes were expressing, on both X's simultaneously, then all females would be mentally retarded.  The genes that are activated on the inactivated X are found in the pseudoaotosomal regions, and some doctors, researchers, geneticists, claim that genes not in the pseudoautosomal regions also escape X inactivation, although I've never seen evidence of that claim.  It might be there I just haven't seen it, or it might not exist period?   lol

      So genes on the X from the father and mother activate in a non uniform patternin XXY males, and depending on which genes and how often those genes are activated will determine the degree of difficulty each XXY experiences. That is a good way to explain why there is a wide variety of effect person to person.    

      Observation:  Isn't it irrelevant if you have central obesity to say so if you don't want to lose it?  Why even mention it if there's no desire to rid yourself of it?  What does it matter if you can't lose weight, you don't want to anyway.  

      The biggest problem hormonally for XXY males is they don't produce enough oestrogen, and they get their oestrogen in the form of estradiol converted from their testosterone primarily, just like any other male.  So how does having an inactivated X make you more female, when you have your fully functioning Y that has many more genes activated on it 24/7 in every cell of your body?   If you refuse to take therapy, aren't you deliberately making yourself sick?   

      What is a high IQ worth if you don't put it to work for your advantage? All IQ shows is what you have learned, it doesn't give any advanteage on what you can learn, or how fast you can learn.  It just shows that you can repeat information at will, on a wide variety of subjects, but in order to know anything you first have to learn it, and high IQ doesn't show the time it took to gain that knowledge.  

      Everybody is different, so are you.

              

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    • Posted

      Greg, you absolutely correct I'm 25 I have a child as well not biologically mine but he is my world. Every day is a struggle but I know as long as I have my son I will force myself to take it one day at a time. I am an XXY male.

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    • Posted

      I am 5 days into my journey down a similar path and I want to share my experience and I would love to see if some of my symptoms resonate with you.  

      * I stopped growing when I was 16

      * I think I was experiencing mensutral cramps around the age of 16 and think I might still be having them I just repressed the experiences and wrote them off as IBS symptoms (which I also have).

      * I had vivid dreams of transforming into a woman.

      * I find erotic fiction easily as exciting as porn

      * I have female patterened pubic hair.

      I would love to hear from you!

      James/Iris

       

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    • Posted

      I’m 23 now I have had similar cramp problems after reading your artical I now look back back and realize what I had and I guess it was cramps cause the doctors couldn’t explain it , everyday I go on living life like I’m not like anyone else , I have deep depression ever since I found out my condition when I was 13 there’s really no sense for me to live if I can’t have children , I can’t ever tell anyone what I have , I feel like I’d be judged but I was wondering if you tried fertility tests , do you feel as if your alone and way different from the rest at times 
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  • Posted

    There is nothing worse than being told you have 47 XXY.  I have been diagnosed with it 10months after we were married and my now brings things up aganst my condition which really hurt, like you're immature, you are so thick, it's all your fault.....sometimes I wish I wasn't even born or at least I wish I could sue my GP for not finding out earlier!  I invested huge money prior to setting up a household and to then be told this......it makes life really testing.  If we didn't have Christian morals we would've moved on and gone our own ways I'm sure.

    I truly sympathise with every guy with this condition, it is seriously hard! It is a life changing experience.  

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    • Posted

      I'd wish XXY on my worst enemy. Unfortunately my worst enemy is an XXY guy.  

      Only 10 months diagnosed, and you have a world more information than I had when I was 10 months diagnosed.  It used to be the idea that to give XXY guys testosterone therapy and by the time they're 40 everything will work out.

      It is simply not true.  Whatever difficulties I have now, or back when I was a teen or child, I'll have for the rest of my life. I see no reason why that will not be your scenario also.

      Not all XXY's have educational, or psychological, or psychiatric problems at all, nor if they do, to the same degree.  How we were raised will also affect us for our entire lives, I believe.

      The best time to change our futures is birth, but even then if our parents are not capable of parenting properly, a diagnosis at birth will not be of any benefit.   

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    • Posted

      Imagine how it was for every XXY before the internet, how every little bit of information had to come from whatever your doctor knew, and whatever therapy you got was subject to that knowledge?  Imagine how any information you sought was kept from you by nurses in particular, and they insisted you could only see your specialist doctor for him, usually it was a him, to share information he thought you could understand?  Imagine how it was that there was no-one you could talk mto but doctors, and if that doctor thought testosterone caused violence, you'd not get any therapy at all?  Imagine how is was when yoiu tried to explain KS and XXY to anybody they could then go looki it up in librarys and discover you were mentally retarded?  How when they discoverd that information they'd call you a liar as it was obvious you werre not mentally retarded, but that was all the infortmation available, as there was no independant source, no internet!

      See how lucky you really are, now? 

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    • Posted

      I feel your pain. Nothing is guaranteed in life. Its a setback that is all. Dont fret about it. My wife and I still had a child thru a donor. Your spouse needs to stop blaming you and making fun of your appearance. You should both seek counseling to make it thru this.

      Men in general Do Not seek counseling. Because we are too proud to ask for help. I have had to drop all that macho S*** and reach out to a counselor and it has made a huge difference in my life. Its so helpful to be able to talk to someone outside the marriage and to just be heard. It helps get thru some pretty bad times. Everybody needs it. If you can make time for it I highly recommend it. Its one thing to be able to talk to a friend over a Pint, but no friend however close that is not going thru what we are going thru can relate.

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    • Posted

      Hello.

      All those accusations against you are b.s.

      If she loves you , and as you say you are a Christian couple this needs to stop. I got married young given that my parents were older in age so I can give them a grandchild before they passed.

      I was diagnosed 2 years after I was married. Given that we were trying to have children that fell as a bomb in our relationship. But given that we are also a Christian couple we left it in God's hands. You can try ivf. You can also try a procedure that also includes them going into your testes and scrapping a sample off of them. Of course that is a 50 50 chance. Been there ,done that.

      Now at the age of 40. We still have no children. We gave up .

      It is what it is. Its not in our hands anymore. Our Lord knows best.

      But you are still young . You and your wife can also consider adopting.

      I sympathize with you. I know how it is. Just take it one day at a time.

      Greetings

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    • Posted

      hey joni62682,,,, I am new here,, I have 47xxy mosaic,,, and yes, it sucks .  My wife and I found out the reason we could not conceive was me,,, I have 47xxy mosaic . Yes my life has been difficult as a child,,, and even now,, I feel as if I am antisocail,, and dont really fit in to the norm .
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