What does it feel like to have Klinefelters' syndrome?

Hello David,   what passes for medical care in Britain wouldn't pass for anything anywhere else.  Males and females have the exact same tissue in their chest as each other, this is not an indication of sex. What it does prove absolutely, to me, is that god does not exist.     Well not the god mentioned in the Jewish/Christian bible.    In that compendium of books the god character is supposed to have said  "Before I formed you in the womb I knew you"  which is rubbish, as if people were known from the womb, the males would not have need of nipples.  The reason males have nipples and breast tissue is that  the developing human is not aware what sex it is, nor the  individual cells that make up the person to be, so evolution made all mammals with cells that can make milk as later it will be determined what sex the person is, and which will need them.  Even baby boys have been noted to lactate (produce milk from their breasts) in the first few weeks of life, owing to their breast tissue responding to their mothers hormones.  Breasts are not in any way an indication of sex. Breasts are not sex organs.  Western style culture has sexualised breasts in females.  That you have breast tissue (gynaecomastia) that no doctor noticed, or if they did, never did anything about is indicative of a poor health service, and poor medical training.  

See my profile image, that's a picture of my very own sex chromosomes from about (as I can't remember exactly) 4 years ago.  I see nothing female about them.  Every person on the planet has at least 1 X, and regular males have XY, that means if I listen seriously to some XXY males, that regular males are 50% female!  Well 50% of the autosomes and chromosomes do indeed come from their mother, but unless they've been checked, most have no idea who provided the extra X for XXY's.  I suppose it can be argued that 50% of XXY males have slightly more female originating genetic material than  XY males, and XXY males who derived their extra X from their father?  But I don't suppose it very seriously. In reality we XXY's are more seriously affected depending on the activation of which X, from each parent.  That is if the X from just one parent is active always, in every cell, that person will be the most severely affected.  The mix of X inactivation is what determines severity, not merely having the additional X.

As weird as people find me today, is how weird I have always been. I have never fitted in to any group, no matter what it is, Kindergarten, Primary school, High school, Polytechnic, after school activities like Cubs and Scouts, Football teams, Rugby teams, just anything.  I do my absolute best of everything on my own.  I am the consummate loner, and I'm good at it! 

So I don't give a toss what people say about me, and I've learned to have that position.  I learn it because the world is unaccepting, and that's the way they like it.  If it wasn't how the world is, it wouldn't be that way. I rarely notice other peoples distress, happiness, anger, unless they make a point of telling me.  And other people includes other XXY's.  This is called 'empathy' and I'm not at all good at it.  Empathy is learned behaviour, I believe, and I was never formally taught it.  Or if I was it went in one ear and came out the other eye!    There is a benefit to this way of life, if I get angry I'm not angry for long. I'm not so much forgiving, much closer to forgetting.  I have a very poor short term memory. I have always had a very poor short term memory.   That's why I did very poorly in school.  

I'm watching Bathurst so I'll get back to you later.

Hello David,

It is perfectly conceivable to me that YOU don't feel male, or as male as you think you should feel, as your mix of activated X's and mine are most probably different.  I have no idea what even my mix is, let alone yours.  This explains to me how some XXY's can feel different than other XXY males.  I have always felt how I feel, and I have never questioned my sex, which as far as I'm concerned is self evident.  All I need do is look at myself, at any age, and see what sex I am.  Having a copy of my karyotype in no way alters what I see with my own eyes.  Having the symptoms of a disease does not alter what sex I see myself as either. Having therapy to prevent those symptoms from showing does not alter my perception of my sex.  I am 100% male.  I have always been 100% male, even when my body had no idea what sex I would ultimately be, I was destined to be male.  I don't suffer from gender hysteria, I love it.    When I had elevated LH and elevated FSH, they being indications of low testosterone, I felt male.  Going back even further, when I started puberty - that nobody warned me about beforehand - I never questioned my sex.  I had no idea why I was having what turned out to be sexualised dreams, and wet dreams, that they had anything to do with sex itself.  Indeed I'd never been taught sex, so had no idea what was happening at all, things just happened and it never dawned on me that this is what happens to everybody.  But if anybody would have asked "What sex are you?"  I'm certain I'd have replied "male."

 

i can understand how you feel  as i had all the parts male and female under me . doctors sewed up pussy but it was still very obvious  and they made bag for my walnut size balls [ both together to be walnut size] when i was 52 i had to have balls cut off due to medical problems  now it is even more obvious but i have personal confidence and will go on nude beach if i wish . anyone has problem with how i am then its their problem not mine . i could fill 20 pages with medical details and problems but you probably know most of them.

Hello David,

No I don't know.  I was diagnosed as an under developed teenager.  I was ultra skinny, almost anorexic.  No musculature.  Skin and bones.  My cousins described me as 'death warmed up.'   Not only was I very thin, I was very pale too.  My natural skin colour is pale.  Yes people did think it was my choice to be thin and pale, I'd often get comments about how I needed more iron in my diet, somehow more iron would make me darker skinned?   Maybe I might have been? 

I was physically immature, I didn't have any inkling of facial hair, or body hair, and just the immature suggestion of pubic hair (that my doctor described as 'good' but my view was 'poor' when my pubic hair finally did grow, under the influence of testosterone, more than a year after I was diagnosed, it grew straight.  It was definitely not normal and looked nothing like the pubic hair of my same age friend.   

So......  I have to go again, things to do.   

Hello David, again,

Te word intersex has never been used to describe me, and if my doctor ever had I'd be asking him to explain himself.  Intersex is a word invented to describe babies born with ambiguous genitalia, and as my genitalia were never ambiguous there was never any need to use that word.  If you search for "ISNA Newsletter Fall 2002"  you'll discover the first ever account of an XXY man who wanted to be referred to as intersex.  His justification is that his balls were atrophied, however they weren't always atrophied. When he was a baby and child they were normal. They were atrophied because of disease, and that disease is called "Seminiferous Tubule Dysgenesis"   Now it just so happens that the people who use intersex as a descriptive say that intersex is a natural formation of sex development, so KS can't possibly be intersex as there's nothing natural about having symptoms of disease.  We're not born with KS we develop KS sometime after the onset of puberty.  It could be a lot, or it could be a few, XXY males never develop KS at all.  If every XXY was diagnosed at birth and followed throughout their lives, maybe we could say for certain how many go on to develop the syndrome Dr Klinefelter described?   

Earlier this week I went to a funeral of a man born on 1946, and he was pretty big before he developed Gastric Cancer, that ultimately killed him.  Of the men present, many of who were my male cousins, the very ones who once described me as 'death warmed up'  and all who'd reached a certain age, had developed a decidedly pot belly, even though they were not all obese.  I too have a pot belly.  I know for certain I am the only XXY male in the group, yet we're all similarly proportioned.   I have a pot belly because I exercise far less than I used to, just like many men my age.  When I was first diagnosed the pear shape body was the one we were all supposed to have, but in recent times that has changed to 'belly fat.'

That other males who are less active than most, or less active than they used to be, also have 'belly fat' is not in any way indicative of KS, but is indicative of being male.  This is where males put on excess fat.

   

 

Yeup I saw your channel name and went directly there.  Nice videos, are we allowed to talk about them?    Diagnosed prenatally, told when you were 9, started therapy when you were 13, I'm just wondering why neither your parents or doctor mentioned ICSI to you?  In my opinion you ought to have been checked for sperm in your ejaculate at 12-13 then again at 14-15 just to be certain you had none, and before you started testosterone.  Having testosterone therapy kills off natural T production, and sperms need lots of endogenous T to be made.  And since you were such an early diagnosis your parents had years to get used to the idea of talking about sex with you.  To me it seems like an opportunity lost.    

That's interesting in terms of testosterone therapy affecting speed production. Would it be recommended that some sperm are frozen before testosterone therapy is started once puberty has begun? 

Hello Sandy, yes, I was checked by myself for 'speed' production   before I started testosterone and my endocrinologist made a note of our conversation, that was just so helpful, I don't have to rely on my memory, but his.  I really like that.   Anyway the microscopes weren't powerful enough to see individual sperms so there might have been the odd one or two, but considering the size of my testes under 1.0 mls on the orchidometer, there's a bloody good chance they were producing none.  Anyway, I was looking for movement, if millions of sperm were present the sample would have appeared to wobble, there was no wobble.  My endocrinologist did not dispute my method.   

Exogenous Testosterone causes the  hypothalamus to 'think'  the testes are making testosterone, and reduces the amount of LH made, that's the hormone that tells the testes to make testosterone.  The hormone FSH tells the testes to make sperm, but in order for the sperm to grow they need testosterone inside the testes.  So whatever sperm making potential an XXY man has, which is likely to be minimal, taking exogenous testosterone will be counter productive.  He'll be much better off stopping all exogenous testosterone therapy, to give his testes every assistance possible to make sperm. Once the spermatids or sperms are harvested he can resume, or start, testosterone therapy.      

Before puberty no male has sperm production.  I'm told that frozen sperm can only be kept for 7 years, but there are plenty of internet records that show modern human sperm being kept for 20 or more years.  It is conceivable to me that sperm collected from a 12-13 year old can be used 20 years later, IF there are sufficient numbers collected to begin with?  It MAY be that in the process of storage that some sperm are lost, and if there are only a few to start with that loss may be more extreme than if there were millions stored?  

Hey,  Im new to talking about all of this stuff on camera so I am not perfect.  Ive been educated by my doctors and parents my whole life, but there is always so much information to learn.  They did tell me about it and I didn't want to do it.  I was 10 when they asked and at 10 who is thinking about kids! Plus that ICSI costed almost 45 grand when I was a kid.  Thats your opinion,  not all of us want kids.    I really do appreciate your deep down understanding of all of the science though.  

Yes, when I was 10 I was not thinking of having children, I didn't have any idea where children came from and had never bothered to ask.  I was thinking about how my cousin 10 years older had a beard and I really wanted to be just like him.  He also had several girl friends and asked me to tell them he wasn't there when he was, with one of them, I just couldn't figure out if he liked them all why he couldn't see them all at the same time?  I was only 10, naive.     True, not all men do think about having children, but our situations may change as time proceeds and time is critical for sperms.  As the saying goes, "It is better to have it and not need it, than need it and not have it."  There's no compulsion to use sperm collected just because it's there, then again as it's virtually certain whatever sperm is present at a young age, won't be there at an older age, then isn't it better to collect it whilst young? 

Where I am health care is free, even fertility treatments are free for two cycles, for those who qualify, and those approaching 40 years don't qualify. Again time becomes critical.  Being diagnosed early is critical, being checked for sperm is critical,  finding a partner who wants to have children is critical, having sperm stored is critical, ahh it's all such a drag!    I can see why some can say "^&*# it  I can't be bothered."

Oh you talk very well about KS/XXY, I can tell,  ,  you're also handsome, and look like you have a great body, and you shave full face, you look fantastic in my opinion.  Your response to testosterone is exceptional, from my perspective, hell I was all grey before I could grow a full beard, and I had to overdose T (under medical supervision) for 5 years before that came about.  So as an ambassador for T therapy, for XXY's, for knowledge, you're the tops!   

with some help from my doctor and more needles than i care to remember i managed to have 2 kids even though my balls were no bigger than a walnut both together. all i remember about the effect was my balls were super hot for few months each time i had the needles

 

i dont know what age you are but i am 62 if that helps in the discussion

Wow the XXY with giant balls!     Mine came in at 1.0 mls officially each.  I discussed the size of them with my endo and he claimed they were less than 1.0 mls, it's just that the orchidometer only goes down to 1.0 mls  - so that equates to 2 x pea size balls,  1 walnut for both are massive.  The biggest I've seen a photo of came in at 6.0 mls.  The biggest I've read about came in at 20 mls.  As with EVERYTHING else, ball size varies in XXY's.

walnut size for both is about 20% of what they should be according to my doctor as he says that normal man is at least egg size

 

Yeah, I've seen comments like that since i was diagnosed,     The trouble with 'pea size' and 'egg size' and 'walnut size' is that eggs, peas, and walnuts come in variable sizes!  Are the size 5, 6, 7, or 8 eggs?    Then I requested and got my entire medical record, which in our law is my personal property, it can't be withheld from me.  That's when I discovered the letters describing what I looked like at 17, if this particular message service would allow it, I'd post relevant paragraphs that you could read, that make perfect sense.  Or I could post links to videos I've made that have those paragraphs in them, but, the Moderator here will block them.  So sad!  

So my doctor uses volume as a measurement of ball size, which makes sense considering balls are roundish.   So normal balls are between 15-26 mils volume.  A normal man with 15 mls balls is fertile and healthy.