Contents Of This Website
Further Experiences Of Hypospadias & Photos
Men's Experiences of Hypospadias
If you'd like to submit your story and/or pictures, or contact other men with hypospadias, please email: submissions "at" hypospadias-emotions.com (please remove the spaces and replace "at" with @ to use the email)
Submission by an American man, age 40
About my parents.
My parents were loving and caring. But they had no idea how to support a 7-year-old son with hypospadias. Basically, they behaved as if nothing was wrong. They never told me there was anything unusual, or that anything was wrong and had to be fixed. I had no idea that I was different from other boys my age. Then one day my mother told me that I was going to the hospital that afternoon for an operation. She refused to tell me any specifics.
I know they visited me at the hospital, but I don't remember them being there that much. I do remember that Mom would sneak in some food every now and then, but for the most part I remember being alone. I had 2 surgical procedures, a few months apart, and during that interval, they sent me home with an indwelling catheter attached to a leg-mounted urine collection bag. Needless to say, I was very self-conscious about it. It was summer, and they insisted that I wear shorts, even though most of the bag was visible peeking out from under the shorts. They kept encouraging me to "go play with the boys", but to be honest my heart wasn't in it. Every other kid was staring at this big thing strapped to my leg, filled with piss. Of course, Dad didn't make it any easier - he would call me over from playing every now and then and pull a stopper out and let the bag (which held about a quart) drain out into a sewer. My parents never understood why I didn't want to play with the other kids. When it came to stuff like that, they were completely clueless.
The next summer (after I'd healed from all the
surgery), my parents decided to send me to a sleep-away camp for a few weeks.
I was already well-set in my habit of sitting down to urinate (my parents
never knew that, and they still don't). Of course the other kids picked up on
it right away. They sensed that I was different, and being boys, they decided
to poke fun at me. Their way of doing so was by trying to piss on me
at different times during the day. One of them would piss on my back while I
was sitting down at breakfast. Another would do it during arts and crafts.
They would taunt me when I went into a bathroom stall, and would try to see
what I was doing. So, I could only relieve myself during the night, when the
little angels were all asleep. This camp was run by priests and seminarians
and instead of supporting me, they decided not to see anything. It's unlikely
that my parents told them about my condition, but I'm sure I stood out like a
sore thumb. That place was torture and I remember just wanting
to hide from all those little idiots. I guess my parents sent me there to help
me re-integrate with other kids. It had quite the opposite effect.
When my first wife conceived, we went to tell my parents the good news. Dad said that he was glad I was able to overcome my hypospadias. That was the first time he had ever spoke that word. And the last. The truth is that I was able to overcome the physical effects of hypospadias - and I did it alone, without their help. The psychological effects are another matter, as we'll see in the sections about my childhood and relationships. The bottom line is that my parents meant well, but really didn't (or couldn't) do anything to make things easier for me. They will never know how alone and defective I feel, to this day.
About my childhood and relationships
The thing I remember most from my childhood is that I was always alone. I had no friends, and I never socialized or dated during high school. Grade school was horrible, and I was frequently taunted or tormented by kids who knew that I was somehow different. During junior and senior years in high school, and on into college, I did form a few close friendships, but these always evaporated as soon as the semester ended. I was never able to form long-term friendships, and after a while I realized that I was the one who caused them to end. Somehow I managed to convince myself that my friends really didn't want to be with me. They would hang out with me during school because I have a fast sense of humor and could make them laugh. But once school was over, they would no longer need me.
After years of therapy, I've come to realize why I sabotage my friendships. I harbor a profound feeling of defectiveness - a feeling of unspeakable and unbearable ugliness and evil. More than mere physical ugliness or deformation, it's a feeling that you are inherently ugly, that it's part of your existence. If you carry that around with you, it's easy to convince yourself that nobody really wants to be close to you. It's easy and comfortable - almost seductive - to push people away. Of course, I "know" that this not true, but emotions and psyche trump intellect every time. I have ruined many relationships, and I fear that I've deeply hurt many people who genuinely wanted to be close to me. When I think back about all those ruined relationships, all the hurt I've caused, these are the biggest regrets of my life. With all this talk of defectiveness and ruined relationships, you might think that I would never marry. But in fact I did. I was married to someone for 24 years before we divorced. My feelings of defectiveness ruined my relationship with my spouse.
You see, I have an addiction. Not to alcohol or drugs, but to pornography. I've been looking at porn my entire adult life. Why? Because for me, sex is a spectator sport. Because I can't do it like "real" men. Because I don't feel anything when we have intercourse (reduced sensitivity). Because I've been hurt so much I'm afraid to be vulnerable with someone who loves me. Because I'm afraid to fail. Because I'm inherently, profoundly ugly, and filled with shame, and I don't deserve the pleasure and joy that sex brings.
Sex was often physically pleasurable with my wife.
But there was always that little voice in my head: "Who do you think
you're kidding with that little wiener that doesn't work right? This isn't for
you, it's for REAL men. Sooner or later she's gonna stop doing you a favor and
she's gonna call you an ugly toad and leave you."
And I made it happen, my porn habit eventually pushed her away. Now, I'm engaged to be married to another girl. She's much more accepting than my first wife, and she is ok with the porn, as long as I don't spend too much money on it. We'll see how it goes.
It's immature of me to blame every problem in my life on my hypospadias experience. I've often wondered if I would have had similar problems without it. But this is the life I've had, and I take responsibility for it. Thanks for reading. Get them corrected early and support them vigorously and honestly as they grow up. Don't let them relive what happened to me.
I'd like to share my personal experiences of living a life of repetitive hypospadias surgery and the related effects it has had on my life. I hope that my tales can enlighten others about a long term life living with hypospadias.
My history starts with two stage hypospadias repair as a small child at The Children's Hospital in Birmingham under the Urologist Dr C. It is fair to say that I have no memory of this surgery however I do have memories of the six monthly emergency runs to hospital for dilatations as I couldn't pee. I remember the intense pain of peeing after this surgery and hated going under the anaesthetic which invariably made me cry. As a child and probably into my early teens I wet the bed most nights and was very much aware that I was different from all the other children. I remember the embarrassment as I grew older that I was still wetting the bed when children of similar ages had grown out of it. I used to cry myself to sleep on occasions asking the question why I was different to the others and "why me".
At around the age of 11 I was referred to Dr W at Great Ormond Street who again conducted a two stage procedure. I now understand that the grafts were taken from my bladder as there was no longer any spare tissue around my genitals that could be used. At the time I was unaware of this however I do remember the pain in my abdomen following this surgery, I could barely move for what seemed days.
This surgery failed again. Dr W retired and I was referred to Mr R at The Institute of Urology at The Shaftesbury Hospital, London. I've lost account at the surgery I had under Mr R, but if I remember correctly I initially had a two stage repair, followed by a couple of operations to repair fistulas. These operations continued most years throughout my teens. I thought that things were o.k. and that the surgery had been successful I was now around 16 and leaving school.
By this time I'd stopped wetting the bed and was a relatively normal teenager, I was quite strong and good at most physical sports. My only hang up was how small my penis was and how different it looked from other boys, I just wanted to be normal. This as a topic of conversation was a closed book that just wasn't discussed. it's only been over recent years that I've explained to my brother & sister the specifics of my condition.
At sixteen I joined the Army. As I remember the doctors said there was no reason why I shouldn't be recruited as far as they were concerned surgery had been successful and I'd live a normal life. The civilian doctor conducting the medical on behalf of the army had no problem with my pre existing medical condition. I was fine. However once I'd been recruited I was re examined by an Army doctor who doubted my suitability. After visiting army specialists I was declared as being unsuitable and that there had been a defect in their enlistment procedure. I was kicked out after 5 months. I was devastated as this was all I'd ever wanted to do. I think the day I was told that I had to leave was the last time I've ever cried. Another knock to my ego.
Probably the right thing being kicked out of the Army as shortly afterwards once again things deteriorated in my waterworks department. I underwent further hypospadias reconstruction surgery at least another three times. The last time I had surgery was around 1988. By this time I was 23 years old, had graduated from college and commenced full time employment.
Again things were ok for a few years at this stage in my life. I was living a relatively normal life. As far as sex was concerned my teenage years had been pretty normal, I'd had more than my fair share of girlfriends during school and had experimented sexually more than most of my peers at that age. Things became a little trickier as I grew into my late teens / early twenties when full sex was expected from your partner. I was 19 when I lost my virginity and had sex with numerous girlfriends and one night stands during this phase of my life which I got through relatively unscathed although I do remember being nervous when engaging in sex especially when penetrating the vagina which was a bit of a fumble, I'd guess normal for age as it's probably down to getting positioned correctly for both male & female. I have no problems in this area now and getting stimulation in my glans now despite how small my penis is. About 3.5 inches fully erect.
I went into my early twenties and was having sex with numerous partners, I was very conscious of the small dimensions of my penis. I was embarrassed to be naked with a partner and again shielded myself if say walking across the bedroom to the bathroom or whilst getting undressed. Girls at this age weren't volunteering oral sex and I never pursued the matter. Performing sexual intercourse never seemed to be a problem. As I grew slightly older and relationships became more open & intimate I became more self conscious of my tiny dick and felt inadequate in that department. What satisfaction could I give with such a small dick? Relationships never lasted that long I'd usually finish relationships after five or six weeks saying that I didn't want the commitment.
Although I've had a number of girlfriends over the years I've always been very shy and reserved when approaching women, I have such low self esteem. In the past twenty years I could count the number of relationships I've had on one hand, and none of these have extended beyond a few weeks. As I grow older I think that I'm a little more at ease with who I am, but still find it extremely difficult to approach women , open up freely and get involved. It may not help that I live in a rural area where there aren't that many available females. Maybe I should move to a more densely populated area.
I was introduced to prostitutes by a friend of mine about 20 years ago whilst living near London, at first these exploits were undertaken after boozy nights out in the West End when we would visit seedy brothels in Soho. As time went on I became more at ease with visiting massage parlours and would undertake sober visits on my own. Over recent years the frequency of my visits has varied. At one point when I was living close to a number of parlours I would visit sometimes up to three or four times a week. I currently use parlours to satisfy my sexual cravings when I get them, usually once a month, and made it one of my must do tasks before my most recent surgery. I think that using prostitutes has helped me become more comfortable with the appearance of my dick. I must have seen at least a hundred and not one has taken a double take at my dick or mentioned how strange it looks, I've become comfortable with them giving me oral sex and would recommend it as therapy for anybody who experiences low self esteem. It's also quite strange how bonds grow between a punter and a prostitute and there have been a few girls who I've been able to discuss my circumstances with that have been very understanding and have given words of encouragement which has done wonders for my ego.
Around 1995 I started experiencing flow rate problems again and visited the Institute of Urology who had now relocated to the Middlesex Hospital in London. The consultant that saw me used dilators and performed a dilatation whist I was conscious using anaesthetic gel. Afterwards we discussed my future. I agreed that I'd had an absolute gut full of being in & out of hospital throughout my life and that now I'd be happy to perform self catheterisation whenever my flow subsided until such time that I decided otherwise.
For the next 23 years of my life I just got on with it and this is what I did without any drama, approximately once every six weeks or so I'd self catheterise which is a virtually painless experience and takes no time at all. Easily undertaken whilst bathing or fitting into your daily grooming routine. I'd use three catheters of various dimensions that progressively stretched the urethra. Over recent years the frequency which I have had to perform this procedure increased and became more painful, progressively I had to reduce the size of the catheters that I was using and increase the frequency that I performed the procedure to a daily regime.
I'd moved home and registered with a new G.P I'd also decided that it was time to get something done about my personal circumstances so asked him to refer me to the Institute of urology in London, he said that he'd have to refer me to the urologist at the local hospital. The local Urologist said that in his opinion the best man in the country was now practising within the Dudley group of hospitals in the West Midlands. I visited the Urologist Dr A who asked me a number of questions about my previous surgery that I couldn't fully answer as I had no real knowledge of exactly what had been done, when I asked my mother she also had no knowledge of the specifics of previous operations. I think that we can assume that consultants weren't quite so forthcoming with information as they are these days.
The doctor was quite reassuring to me, he informed me that it was not unusual for men of my age to be referred to him after hypospadias surgery as children. As he didn't have my previous case notes he wasn't totally sure about the surgery he'd need to undertake until he saw me on the operating table. I duly waited for my hospital appointment with certain anxiety.
Last week I was admitted into hospital and first stage hypospadias salvage urethroplasty with buccal muccosa graft was undertaken. The buccal muccosa graft means that the skin grafts were taken from the inside of my cheeks. As I mentioned previously the consultant was unsure what would have to be done until I'd been opened up. After coming around from surgery I was informed that my natural urethra only extended around 2 cm from my bladder and that the rest of my water pipe was completely knackered. I was informed that the first stage of surgery had been a success. A 12 cm graft had been constructed. I'm now convalescing at home, I have to return to hospital tomorrow to have the catheter removed. I'll then have to return to hospital in around six months time to have the second operation.
As you can see I've lived an entire life with hypospadias and have been in hospital more times than you can probably imagine. I'd like to give reassurance to anybody about to undertake surgery that the hospital experience has changed so much over the years.
First experiences so many years ago: I have such vivid memories of the nausea and pain when coming around from surgery it was not uncommon to vomit which caused intense abdominal pain when throwing up. It was usual to be sore and in pain for days afterwards. The regime after major surgery involved 10 days' bed rest. This is what I was not looking forward to.
My most recent experience was so different, firstly there was no pre-med injection, I was walked fully conscious to the operating theatre. The theatre staff were so helpful in explaining everything they were doing which helped put me at ease. Everybody introduced themselves and told you what their role was. Coming around in the recovery room I remember joking "I suppose you're going to make me walk back to the ward." There was absolutely no nausea and absolutely no pain in the groin. I am so surprised, there has still been no pain in the groin after 10 days. The only pain that I have suffered is in the mouth where the grafts were taken from. Remember they took 12 centimetres. It happens that there were two other guys in my ward who'd had similar procedures but only small grafts were taken. They were eating roast beef, potatoes and Yorkshire pudding the next day. It has taken until today (10 days) for my mouth to recover, I've been on a soft lukewarm diet so far. I'll go back to work next week which means two full weeks off work.
I hope that my case is of interest. It's fair to say that I've experienced similar mental trauma and anxieties to the ones other contributors have expressed, however I doubt there are many that have been through the mill quite like me. I have had suicidal thoughts go through my mind, there have been times when I've gone through the "why me" scenario but every time I see a disabled person or somebody suffering mental illness etc I realise that there are those who are far worse off than me.
I would also urge anybody who has not had corrective surgery to consider it as these days the procedure is pain free and you're home convalescing in three days. I do hope that one day I will find a suitable partner and develop a long term relationship. One thing that I have been told to expect is that in 10 years I'll probably have to undergo further procedures and that repeat surgery will be an ongoing part of my life.
There are a few which were taken shortly after the operation before the catheter was removed, the remainder were taken today one month after surgery. As you can see the opening where I now pee from is towards the rear of my scrotum. Although the channel that has been created may appear extremely tender and raw it is due to the skin grafts being taken from inside the mouth and is actually quite pain free, there is an amazing sensation of touch to the skin which is apparent whilst cleaning. I am obviously awaiting an appointment for further surgery when it will all be stitched up, I'll keep in contact & let you know how I get on.
Comments arising from previous correspondence.
When fully erect I'm probably about 3.5 inches.
The Army said that first and
foremost you are a soldier you have to be fit for war & that I may have been
a burden on colleagues in a conflict situation.
The other message that I think it's important to portray to people who feel sorry for themselves is that yes, at times I have been through emotional hardship, but one only has to look around at people with disabilities who are far less fortunate and able than we are, and they manage to get along in life, so why not put a lid on the self pity & make the most of what you have got? And don't be afraid to experiment with sex workers, in my case being open with them has helped me to be more open with others who are closer. after this last operation I've opened right up to all my colleagues and friends without going into specifics of the operation.
The other thing is for those who have just had children and are about to make hypospadias part of their life is that they should be prepared for a possible lifetime of Hospitalisation and disappointments that surround hypospadias. My parents were always misinformed I believe when doctors said " It's o.k. we can fix it." Because they never did & consequently they were disappointed. At least the doc who's treating me now has had the balls to say, "You'll probably be back in another 10 years."
I unearthed an interesting article that said there were possible links with hypospadias & hairspray, which fits my case as my mother worked in a hair dressing salon throughout her pregnancy with me. Knowing this has helped give me some personal closure on the "Why me" aspect of living with hypospadias. I now feel a lot better about things.
Hope you find my comments of use and that you can edit them in appropriately,
So to start from the beginning. I was born with a mild hypospadias in the mid-sixties. I attended the local hospital at the age of two for the first stage of the Denis Browne procedure which, according to the notes passed successfully. I was re-admitted a couple of years later for the second stage. This is where things began to go wrong for me. My recollection is that I woke up in a bed in a ward that had shut down for the night. Everyone was asleep except for the duty nurse, whose night-light that enabled her to perform her paperwork was on at the far end of the room. I didnít know what was happening, why I was there or why my mother was absent. I began to fiddle with my penis, finding a scab and passing out in extreme pain. The notes say there was dislodgement of a double-stop suture which meant the procedure failed. What a way to go.
I remember being in hospital the next time. I was far away from home, I knew, and there were other children. My mother had a room as I was there for quite a few days. The next thing I know is that I had a catheter tube in my penis and stitched to my abdomen and people had to change the bag every day when I went to the toilet. I understand from the notes I was there for an Ombredanne repair. In this procedure my foreskin was used to repair the hole that had developed in my urethra which had meant I was urinating from the underneath of my penis. The foreskin was wrapped around the shaft and stitched.
was not playing with it this time and the operation was a success. But the mild
hypospadias I was originally being treated for was never solved and I grew up
with the partial result of the Denis Browne displayed on my glans.
So the physical urgency had been dealt with. I was able to urinate well enough for it not to be an issue they thought, though I prefer to sit than stand these days. But there was no provision back then for the psychological effects that developed and the feeling that it was something to be hidden and not talked about and certainly not played with was strong. The effect it had on my early schooling, where I was different but not really understanding why, affected me.
As I grew I actually forgot what had happened to me. Other issues of growing overtook it. The whole experience was buried and I kind of lost something of myself because of this. I know because following an accident at work, a road accident where I received a head injury, I had a major, and I mean major flashback to the time when the later operations were happening, and in that process knew instinctively that I was not the person I thought I was. And this disturbed me greatly and I couldnít deal with it and ended up requiring psychiatric intervention. Why?
But there were other things that happened in my childhood that needed attention as an adult. I developed a serious temper and behavioural problems that my family stamped on. This resulted in me generally behaving at school and appearing normal, well as normal as someone who appears circumcised but with a split at the end of his penis does.
But this behaviour resurfaced in my adulthood and displayed itself as very nasty to the point where I hope you forgive me for not mentioning it here; also what began as generally accepted sexual discovery between boys at the usual age became sexual abuse throughout some of my teens. I couldnít stand up for myself to stop it; I took to cannabis heavily as an adult and I really suffered and others have really suffered because of itÖpartners, friends, and family. I have to remind myself that I am a victim but I know I have erred greatly and live with this daily.
What started as a mild hypospadias resulted in a complete
nightmare and at 44yrs old I am really only beginning to get my life together,
for the first time, as everything that has gone before has been the proverbial
cock up. Iíve been from pillar to post and really do feel that it is wrong, and
I am bitter about it, so very bitter. I have resilience but even this was tested
three years ago when I decided to take an overdose of sleeping tablets wanting
to end my life. Fortunately, and I do mean this if anyone else is thinking of
the same, there is support. There are also ways to cleanse yourself in this
world other than my experience. I was lucky I had friends. They have been mental
health staff as everyone else had turned away, but after 16 years of being
around them they can only become friends, friends with a job but also people who
care and forgive.