Welcome, Guest. Please Login or Register
Hypospadias Support Group
  News:
Emails sent to new registrations are fixed. The board has also been upgraded.
  HomeHelpSearchLoginRegister  
 
Pages: 1 2 
Send Topic Print
General information on Hypospadias (Read 8667 times)
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
General information on Hypospadias
Apr 24th, 2008, 3:43pm
 
'I was born with a birth defect of the penis where the opening is not at the tip but underneath.  I took me many years before I was able to find the name of this condition, but I now know it to be hypospadias.

Thanks to the Internet and sites such as this I found that I was not the only one with this problem, indeed some figures suggest 1 in 300 boys are born with this defect of the urethra opening.

Some boys are circumcised at or shortly after birth but I understand that the foreskin is best left in place because it can be used to effect a repair if a surgical procedure is sought.

Members of this site are able to help each other with advise and by sharing experiences.'

Back to top
 
 

John Lewis
  IP Logged
victor
YaBB Newbies
*
Offline

Enjoy Life

Posts: 4
South Africa
Gender: male
Re: General information on Hypospadias
Reply #1 - Jul 8th, 2008, 8:08pm
 
Good day John

My name Victor, i aslo have mild hypospodia yes did my fare share of penis research on the internet, sometimes things it crazy but ya eventally find out the thruth thanks to this sites.

Yes, I am circumcised and have a dubble uretrha one blocked and the hypospodia one open, is actually very funny when acceptanc kick in and learn living with it, yes a little shy towards girl because of that. yes and never feel  I fit anywhere, but ya getting over that , slowly.

Thanks for your shares and it is nice to here that others aslo have these conditions, now I don't feel that alone anymore.

Great day
Back to top
 
 
victor   IP Logged
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
Re: General information on Hypospadias
Reply #2 - Jul 9th, 2008, 9:10am
 
Hi Victor

Good to see you on the site, I hope you will feel able to share your situation as time goes on and also get support from the folks on this site.

There are many parents on the site, supporting one another and their children born with HS.  Then there are other youths and men who are personally affected by HS and can be a help when certain things are discussed.

I hope you are well.

John Lewis
Back to top
 
 

John Lewis
  IP Logged
stacy
YaBB Newbies
*
Offline

I Love YaBB 2!

Posts: 0

Re: General information on Hypospadias
Reply #3 - Sep 3rd, 2009, 3:02pm
 
hi, my son is 11 months old now, and he was born with hypospadias. yesterday he had an operation to correct this. a new opening was created for him at the end of his penis. also, his penis had grown badly twisted, so it was straightened and he was circumsised at the same time. although yesterday was very traumatic for both of us, and im sure the next couple of weeks will be incredibly difficult, im glad that we have got this sorted now. his father was born with the same problem, and was also operated on as a baby and he is glad that he had it done, which is why we decided to sort it out for my son asap.
I have to admit that even though theres nothing i could have done, i feel so guilty that i grew him in my womb, and i was supposed to make him perfect....im supposed to protect him from the bad things....and i couldnt.....
i hope that when hes bigger he understands and agrees with our decision and that he is happy with the result. luckily as he is so young, he will not remember anything about the operation or recovery...
Back to top
 
 
  IP Logged
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
Re: General information on Hypospadias
Reply #4 - Sep 4th, 2009, 12:10pm
 
Thanks for the posting Stacy, hope things soon settle down for the little chap. Take it easy.

John
Back to top
 
 

John Lewis
  IP Logged
Amanda31
Full Member
***
Offline



Posts: 46
Oxfordshire
Gender: female
Re: General information on Hypospadias
Reply #5 - Sep 4th, 2009, 10:59pm
 
Hi all
My son was born with epispadias which is a little different and more rare. I too feel very guilty he was born with this. He is nearly 4 (this month) now and still waiting for his op Cry and until he has it done he is incontinent so still in nappies which he is starting to hate. So just hope he doesn't have to wait much longer.
I have found this form very helpful knowing we are not allow in all this. I have had help and advice from people on here when I had to find a new surgeon. And although he has a different condition its still helpful hearing how the children have got on when having their ops.
I also hope this site will help him when is is older too.

So thanks xxx Smiley
Back to top
 
 

Mum to 3 boys. Owen age 4 our youngest was born with EPISPADIAS and is finally had his op with Mr Cuckow at GOSH on 10th Feb
Amanda31   IP Logged
mumbaby
YaBB Newbies
*
Offline

I Love YaBB 2!

Posts: 0

Re: General information on Hypospadias
Reply #6 - Sep 13th, 2009, 1:55pm
 
Hi Stacy

My son is going to have an operation in October and I feel sick just thinking about it.

He is currently 17 months old, and has got Hypospadias grade C (most severe condition).

I would be open to any advice which could make this experience less traumatic for my little son. I am especially worried about how to handle the after care.

Many Thanks!




Back to top
 
 
  IP Logged
AdeleR
YaBB Newbies
*
Offline

I Love YaBB 2!

Posts: 0

Re: General information on Hypospadias
Reply #7 - Sep 15th, 2009, 2:59pm
 
Hi, my son is also booked in to have th op in October. he is 3 and since i got the appointment date through this morning i've felt so worried about the whole thing. he has been potty trained for over a year and i'm worried about the affect it will have on this as well as the general affect on him. Does anyone know the recovery time of the op of children this age?
Back to top
 
 
  IP Logged
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
Re: General information on Hypospadias
Reply #8 - Sep 16th, 2009, 8:57am
 
Hi AdeleR

At 3 years old there will be some need for distraction as well as special arrangementsfor cath; if fitted, pads possibly; elsewhere there are posts from parents with quite a bit of detail.

Will you consider opening a new post on the members part above? There might be others with specific details.

All the best,

John
Back to top
 
 

John Lewis
  IP Logged
shell
Full Member
***
Offline

I Love YaBB 2!

Posts: 37
manchester
Gender: female
Re: General information on Hypospadias
Reply #9 - Jan 27th, 2010, 9:20pm
 
hi my name is michelle and i have 3 boys,harvey-lee my middle boy is 3 in may and he was born with severe hypospadias he had hes corrected in summer 2009,harvey has other problems relating to hes hypospadias i dont really know much about it as the doctors arnt explaining it to me the way i can understand but (intersex has came up in the meetings) can anybody help me with this.
Back to top
 
 

mum to 3 boys Harvey-lee my middle boy had severe HS corrected august 2009,at the new childrens hospital manchester x
  IP Logged
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
Re: General information on Hypospadias
Reply #10 - Jan 27th, 2010, 11:15pm
 
Hi Michelle

Intersex is a term that is a bit misleading and severe HS is the condition affecting your son by the sound of it.

If it is severe HS and not anything else, like problems with his testicles, then that term IS is not helpful.  Did they carry out any chromosome tests to check on gender?

Regards

John
Back to top
 
 

John Lewis
  IP Logged
shell
Full Member
***
Offline

I Love YaBB 2!

Posts: 37
manchester
Gender: female
Re: General information on Hypospadias
Reply #11 - Jan 28th, 2010, 4:22pm
 
hi john,thanks for your reply,harvey has had numerous blood tests done and they have told us hes got 2 cell lines one has a deletion of hes y chromosones,as well as hes hypospadias he had to have hes right testicle removed as it had female tissue
on hes medical notes that i requested it mentions all differant things about why they removed it and it says fallopian tube,uterus ovary and other things,they have also found a structer during hes hypospadias repair we are awaiting scan appointments at the mo,does this make any sense to you i am very confused with it all .
,
Back to top
 
 

mum to 3 boys Harvey-lee my middle boy had severe HS corrected august 2009,at the new childrens hospital manchester x
  IP Logged
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
Re: General information on Hypospadias
Reply #12 - Jan 28th, 2010, 7:26pm
 
Hi Michelle

Thanks for the update, it does sound like quite a complicated case so you should address your concerns to the consultant or his specialist nurse.  That would get the correct answers for you.

There are a few guys on HS sites who had similar starts in life, one testicle removed etc and some are family men now, so don't cross any bridges or worry too much at this stage.  Just get the best information from the professionals, even make a list before you go.

All the best.

John
Back to top
 
 

John Lewis
  IP Logged
John_Lewis
YaBB Administrator
*****
Offline

Distal, penile HS
uncorrected

Posts: 322
West Yorkshire, UK
Gender: male
Re: General information on Hypospadias
Reply #13 - Jan 28th, 2010, 7:27pm
 
Hi Michelle

Thanks for the update, it does sound like quite a complicated case so you should address your concerns to the consultant or his specialist nurse.  That would get the correct answers for you.

There are a few guys on HS sites who had similar starts in life, one testicle removed etc and some are family men now, so don't cross any bridges or worry too much at this stage.  Just get the best information from the professionals, even make a list before you go.

All the best.

John
Back to top
 
 

John Lewis
  IP Logged
RachelG
Senior Member
*****
Offline

I Love YaBB 2!

Posts: 99

Re: General information on Hypospadias
Reply #14 - Apr 1st, 2010, 4:58pm
 
My 8month old son has severe hyperspadias along with bifid scrotum so has to have complete reconstruction of his genitals... I had never heard of this condition until I had my 3rd child. Because of this he now has to have hormone tests done in 12 days... why do they need to do the hormone tests? Can someone please give me more info than what the doctors have given me? His hole isnt at the tip but at the base, all his penis is stuck, his uretha is so far over to the side its untrue and its so severely bent its almost back on itself going downwards instead of to the side. Ive been told that he will have to have at least 4 operations to correct it... What are the complications after, if any, and in later life? Undecided
Back to top
 
 
  IP Logged
Pages: 1 2 
Send Topic Print