I've just been told i have ks and I don't know what to feel

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today has been a big day , found out I have ks and reading all the information has me stunned make sense on my struggles growing up ,I'm 23 have my first shot today feels bloody weird it's been a long road to this point , I just don't know how to feel I'm way over emotional and just have no clue what to do ,I feel stupid not sure what to do .

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  • Posted

    Hi Sammy

    Thats a big thing to take in. It’ll take time to understand.

    Do you mind me asking about your story. How did you come to be diagnosed?

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    • Posted

      Hey yep , well I noticed a few different changes the main one was I'm 23 and have lost my libbdo so no sex drive and has been annoying me a few times of too much stress I'm not that tall only 5-7 and not being able to handle a few things . 

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  • Posted

    Hello Sammy,  your post caused me to think about what happened when I was first told, my Dr said "We think you have Klinefelters syndrome, we think you have another chromosome." and I said "What's a chromosome?"  Of course that was a silly question, I knew exactly what chromosomes were, but over the years since I've come to understand that saying silly things is common, for me.  Actually saying silly things was always common to me, it was just pronounced at that moment.

    The reason my doctor said 'we' is because he was the second doctor I'd seen that day, for the same thing, not that I knew it was a thing before my first appointment.   

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    • Posted

      It was a long time ago  biggrin   and I was a teenager.  Now what are we going to do about your situation?  These days there's a ton of information out there to find, maybe  even too much?

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    • Posted

      For me I have no clue couldn't sleep so spent MyTime in google makes complete sense some things are adding up , my emotions and stress are all over the play I need to learn to control them it's a struggle did you have similar emotional crap , know of anything to help ,? 

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    • Posted

      12 years after I was diagnosed I went to a Polytech course, where I met a fellow and we became friends, earlier this year he tells me he too is XXY, amazing!  Life just goes on, we find out whatever we can and live life like anyone else.  I bet you have plans for the future that you're working toward achieving, you'll continue to do that, when you're ready.

      How you feel, now there's something I can't help with, I don't know how to.  As far as I'm concerned all the crap in my life before then was directly related to being XXY, but I didn't know it.  I didn't know there was any relationship between them and me being XXY until 1994, that was 17 years later.  My endocrinologist dismissed all things that weren't about hypogonadism, that's where his expertise was.  There were no other specialists to see about emotional things, and at the time I had no idea my emotions were related.  

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    • Posted

      You have come along way it be nice too meet someone the same with me . So I can try to understand it all . So for when it comes to emotional stuff I should suck it up lol 😀 Thank you for replying it means a lot 😃

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    • Posted

      You're in Great Britain somewhere I presume, search the KSA, they can put you in contact with other XXY's, guaranteed.  They even have outings etcetera......  maybe a picnic?  You can take a hamper, a bottle of vino, or chateau de cardboard?  rolleyes  The world is out there! 

      Nah I don't believe in sucking stuff up, never know what lumps are in it!  No it was my doctor who wasn't all that keen on the psychological/psychiatric side of things, when I first read about it I wondered why I was unaffected, then it turned out I wasn't so unaffected at all, I was just living my fantasy world that no-one else could share!  (Reminds me of a song where the singer died of complications of anorexia)  and that's something I was suspected of having, until they (doctors) realised I was desperately unhappy about being so skinny and I wished they'd all just shut up about it!  cry

      Anyway, I don't think there's a standard 'way to feel' when diagnosed with KS/XXY.  I expect you're not going to be over the moon about it, then again the opposite of euphoria might be commonplace?

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    • Posted

      I'm over in New Zealand . My memory is shot I read it all makes full sense so now when I come to reply I become stuck so I apologise for late replys . So it seems to take a lot of time too understand it all and make sense of your feelings, postivty is key ,

      i hate feeling the way I do I'm happy I have an answer to some of my problems , I've watched a xxy guy on YouTube he makes me want to open up more about it all .. 

      where abouts in this great world are you ,? 

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  • Posted

    There used to be a support group in NZ for XXY's etc, and the guy who started it did a fantastic job at raising money and getting people together.  Then his wife got pregnant with their second child, who happened to be disabled, so he gave it up for his family.  The XXY guy who took it over broke a cardinal rule when it comes to contacting people, and Lottery Grants Board, and every other charity that has money to give blacklisted the group and it died, of course!  A few years ago I heard of a few guys in Auckland who wanted to form a new group, but nothing came of it. Everybody wants someone else to do the work, and nobody wants to help run it. Nobody ever has money t donate, some don't even think money is necessary.  Of course if a person is loaded with cash they can run anything informally, pay for everything from their own pocket, it's no hardship at all.  It's not until the cash runs out that the pressure goes on, and people falter.

    I have a YouTube account, totally dedicated to XXY issues.  Another account is totally dedicated to my new hobby.  It's not nearly as popular.  You can do that, it takes nothing to make a YouTube account, and slightly more effort to make a video.  I also have a Vimeo video account.  Vimeo has none of the community guideline issues YouTube is plagued with.  Vimeo allows nudity and doesn't ban videos that mention sex, sexuality, and Disorders of Sex Development.  My most popular video on Vimeo has 365,000 views and has  742 likes.  cheesygrin

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    • Posted

      What does money have to do with it isn’t a support group about supporting one and other , it be cool to meet people with the same xxy it’s nice to know where not alone in it all . 

      What’s the YouTube account and vimio account ,? 

      Wanna privite msg me ,? 

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    • Posted

      Well if you can run a support group on nothing at all, I'll be eagerly awaiting your invitation.  You must have a very well paying job to be able to pay for everything that will be needed, like a venue.  Then there's those with little money, they may need assistance to get there?  In these days e-mail will do just fine for communication, but the account for the support group  will need to be different to your personal account, I suppose gmail will do for that, but still an internet connection costs money.  But if it's so easy to run a support group on nothing, why isn't there a support group in NZ?     

      I'll have to send you private messages with links as the Moderator will block all messages with them included.  

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