Dealing with Klinefelter's Syndrome / XXY? Come here for friendship and support

[clarkea]

clarkea~~ thank you for the compliment i am from Texas ....
you are lucky your DH doesnt have as many KS symptoms..i am more laid back so we even each other that but sometimes i want him to calm me down and it's hard lol also, my DH has always had normal testosterone but for KS hormones work differently and many KS patients have told me that the normal level for them is lower than just your average joe's testosterone levels. Most KS patients start taking T therapy as pre teens. Also if your DH has any of the symptoms..there are so many, even in the sexual area, T therapy will help. Our endocrinologist said T therapy will help impove his libido and i was like "oh no can't u give him something to slow him down? lol i'm just not one to want it every day lol " luckily he's not had any issues there, it's more due to his moods and energy level. I've already seen a difference in just a month of shots.
speaking of mosaic Klinefelter's...they usually are not infertile. (according to research)

yeah we are lucky he doesnt have many symptoms . like i said just the infertility,
ha ha my DH doesnt need increased libido either. i like what you said ha ha
regarding mosaic, ive read that too but i think the fact that we have been ttc for 7 years proves that he isnt. You never know though, it only takes 1!
they said usually if your mosaic when you have the kyrotype test it would normally show up that there is some normal xy in there but then again they said they couldnt test all of it.
We have got our heads around that he isnt but i still feel devastated every month when the girlies come!

 

[clarkea]

Yeah, my DH has had absolutely ZERO problems in the bedroom department, despite having a low Testosterone (8). His Endocrinologist thought there might have been past problems because of it, but he's never, ever had any issues or libido problems. In a way it's a shame he didn't, as it may have prompted us to go to the docs sooner and find out what was going on and we'd have known sooner etc. But c'est la vie!

i agree same here, if there were symptoms before we would have found out earlier!
My DH testosterone level is normal 9.8
FSH value of 8 which they say is in the upper range of normal
LH is 8.7

not sure what the normal level should be for LH but the FSH and Testosterone levels are good.

 

[Stardust1]

We had our appointment with mr Nick Brook at the Princess Anne hospital in Southampton today and he has given us the option of sperm retrieval, he was very shocked at the way we were treated by our fertility specialist in Portsmouth especially the way we were discharged with no offer of genetic counselling or even any explanation of the condition. Mr Brook is a specialist in male infertility and if we decide my husband is going to have the operation he would do it himself possibly in May, he said the chances of finding anything is exceptionally low and being as his testicular volume is low he might have to take a considerable amount of tissue which could lead to testicular failure (this is what worries my husband the most). If we chose to go with donor sperm we could start almost straight away, so we are very very torn and have a big decision to make over the next couple of days.

 

[clarkea]

We had our appointment with mr Nick Brook at the Princess Anne hospital in Southampton today and he has given us the option of sperm retrieval, he was very shocked at the way we were treated by our fertility specialist in Portsmouth especially the way we were discharged with no offer of genetic counselling or even any explanation of the condition. Mr Brook is a specialist in male infertility and if we decide my husband is going to have the operation he would do it himself possibly in May, he said the chances of finding anything is exceptionally low and being as his testicular volume is low he might have to take a considerable amount of tissue which could lead to testicular failure (this is what worries my husband the most). If we chose to go with donor sperm we could start almost straight away, so we are very very torn and have a big decision to make over the next couple of days.

1 step closer! ahh well im glad they have finally given you the options they should have given you in the first place!
what would testicular failure involve?
when you say testicular volume is low do you mean small testies??

 

[Stardust1]

I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.

 

[Stardust1]

Oh and I asked him if my husband should be on any treatment and and he told me no because he was a fit and healthy man with no obvious symptoms (apart from the obvious lack of spermies!)

 

[theclarks8687]

I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.

Lol I'm sorry bit that made me giggle. I told my hubby (who has the smaller ones too) that they are just cuter cause they aren't all droopy and hairy and icky lol

 

[silverbell]

We had our appointment with mr Nick Brook at the Princess Anne hospital in Southampton today and he has given us the option of sperm retrieval, he was very shocked at the way we were treated by our fertility specialist in Portsmouth especially the way we were discharged with no offer of genetic counselling or even any explanation of the condition. Mr Brook is a specialist in male infertility and if we decide my husband is going to have the operation he would do it himself possibly in May, he said the chances of finding anything is exceptionally low and being as his testicular volume is low he might have to take a considerable amount of tissue which could lead to testicular failure (this is what worries my husband the most). If we chose to go with donor sperm we could start almost straight away, so we are very very torn and have a big decision to make over the next couple of days.

I'm so glad you have seen an expert and he's dealing with your situation appropriately. Unfortunately there are a lot of medical professionals out there who don't know enough about KS or even azoospermia and who consequently don't give out the correct and full information and certainly lack a fair bit of compassion.

I hope you guys can come to a mutual decision soon.

I don't know if you're interested, but Mr Ramsay in London is the only person in the UK who will do a microTESE, which involves taking less tissue and gives better results than the standard biopsies offered. We saw him privately for the initial consultation to get the ball rolling and then managed to persuade our GP to do an NHS referral to him. After the referral was received we had to go and see Mr R again on the NHS unfortunately (just one of those things - waited a couple of months I think) and then from then it was around 2.5 months until the NHS operation came up.

Don't want to complicate what's already a difficult decision for you guys, but didn't know if this option would help either of you.

 

[clarkea]

I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.

ahh right but wouldnt the testostorone help with that? I know they have said to us that there is a very big chance when they do it they will hit something which will mean he will need to be on injections for the rest of his life. I think that is the same as what you have been told.
Anyway we are going ahead with this. We have discussed it in detail and have decided that if there is any possibilty of having a child fathered by my DH then its a chance we are willing to take.
It does scare us but for us the chance is worth it.
I dont know if this helps you in any way but just to let you know we are chancing it.

ha ha my DH are slightly smaller then average too, keeps it looking tidy though hey lol

 

[clarkea]

I think it means that they could stop working altogether, ie hormonally, I probably should have questioned that a bit more. The testicular volume relates to the size, thats how its written on his test results, i think its written like that so it doesnt hurt their feelings hehe my husbands are smaller than average.

Lol I'm sorry bit that made me giggle. I told my hubby (who has the smaller ones too) that they are just cuter cause they aren't all droopy and hairy and icky lol

ha ha ha ha ha im sat here lol

 

[theclarks8687]

So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.

 

[clarkea]

So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.

ha ha funny, same here my DH sex drive is very high! He's randy all the time lol. Id say average we are about twice a week too.
The first time i'd heard that it should be low is on here. No docs have mentioned this to us so i was quite shocked when it was mentioned on here.

 

[theclarks8687]

So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.

ha ha funny, same here my DH sex drive is very high! He's randy all the time lol. Id say average we are about twice a week too.
The first time i'd heard that it should be low is on here. No docs have mentioned this to us so i was quite shocked when it was mentioned on here.

I had originally found out about it on the information online along with hubby. Of course that made him think his libido was on the low side and now every time he pounces I say "libido my ass" lol to let him no I think that its full of crock he thinks he is lacking.

 

[silverbell]

So i have a personal question ladies...you are more then welcome to ignore it.....but they say sexual libido is supposed to next to nothing.....but all I have to do is shake my you know what or flash a nipple and Im getting pounced...On average we do it bout 2 times a week give or take once. After 5 yrs I think that is pretty regular.

Absolutely no problems here either. Very regular (3 or 4 times a week usually) and never any problems with performance etc. After over 7 years I think that says a lot too lol.

Low libido is apparently linked to low Tesosterone and those guys with KS usually have a low Testosterone due to the usual testicular failure that comes with the syndrome.

But just like those men with KS don't all have the same features of the syndrome, it appears libido isn't affected for all of them either. I wonder if perhaps some of these guys have just gotten used to not having as much Testosterone because they were born with it? No ideas. I'm just very glad my DH's libido isn't affected because this diagnosis and the azoospermia is hard enough to deal with as it is, isn't it?

 

[Stardust1]

Definately no low libido here either at least every other day everyday sometimes, I was concerned though that if his testosterone were to drop it might affect it, that would finish him off I think lol!

 

[theclarks8687]

Wow 7 yrs and u get laid that much? Lucky lady lol I am thankful for one thing about the ne sperm part. I see so many lttc couples that make doing the deed a chore and with my DH and I, I know everytime we do it, is simply because we love each other and finds me doable lol sex will never become a chore for us.

 

[silverbell]

Wow 7 yrs and u get laid that much? Lucky lady lol I am thankful for one thing about the ne sperm part. I see so many lttc couples that make doing the deed a chore and with my DH and I, I know everytime we do it, is simply because we love each other and finds me doable lol sex will never become a chore for us.

Yes, I really get laid that much. After 5 years of marriage I'd been warned things would get stale ... if anything they're better than ever.

To be honest even though we'd been TTC for nearly a year when we found out about DH, sex still wasn't a chore because we just enjoy it too much. Any excuse and all that! We both have high sex drives.

I do think what your last sentence says is sweet and very true though. Sex for us couples now is purely for the pleasure and intimacy and will never, ever be for anything else, which is kinda cool. Well, we've got to look at the positives right!

 

[theclarks8687]

Hey I believe you have to look at the positives and crack jokes along the way. Otherwise the whole situation is just too dang depressing

 

[theclarks8687]

How is everyone doing this week?

 

[Stardust1]

Woah huge congratulations on you bfp! You must be thrilled x x