That’s what I said to myself three years ago when I was searching the the internet for others like me. In the back of my head I could feel other like me out there but didn’t know how to find them. It is so hard to explain how good it feels to know I’m not alone. Since I was a child I dreamed of one day meeting someone like me. Someone to share what it is like to live a life of shame, fear, and darkness. A lot’s changed since I found out I’m not alone. I have met with many members here who are just like me. For the first time in my life I feel free. I no longer hold my head down, feeling I did something wrong just for being born. NO more guilty feelings or thoughts for something I had no control over. I grew up wondering what am I and who am I. No one told me anything about my body; they just let me grow up, hoping for the best. I no longer have to ask myself what’s wrong with me or any other question because I know. I have hypospadias, one in 300 born. Born with a condition beyond my control. Under those conditions I don’t accept another name for me. I want to overload my mind for a normal behavior for a person who was born under these conditions. I won’t allow others to be quick to put a nametag on me. Until the doctors and parents are educated on my condition and we can break the cycle of the future kids who are born with HS and ES. I exempt myself of any other tag placed on me. For others out there with my condition, I say relax and learn to live, don’t do what I did for many years, waste time. Rid yourself of that negative energy and feed off the positive. Ask yourself what can you do to help the kids of the future so that one day they don’t say Thank God I’m not alone .
Firstly, understand the context. This was the 1960’s and 70’s, the advent of the more caring society had not yet happened, and this was Britain, with its stoicism, ignorance and taboos.
The main things I remember about going to see the urologist was the fear. Sick, gut wrenching fear, combined with humiliation and shame. My father was of the old school that Doctors were Gods, their words, Gospel truth, their deeds, miraculous. All I knew is that my father (NEVER my mother as it was deemed inappropriate for her to be with me whilst such examinations took place) used to take me every 6 months to a place. In that place a man would want to look at and examine my willy. I didn’t understand, I was just a child for crying out loud. And, aged 7and a half, the Doctor said “All’s ok” and I didn’t see another urologist until 2 weeks ago.
Looking back now, as a psychotherapist, I can see that child feeling abused. No explanations were necessary as I was unable to comprehend what the doctors were saying, but I FELT ABUSED.
Then came Grammar School, and puberty. Obvious differences appeared and I became fearful of the changing rooms, communal showers, even going to a public toilet (the ability to wee around corners wasn’t much appreciated, and wet shoes and trouser legs were always good for a laugh). I was aware of the pubescent changes in my fellow pupils and that they weren’t happening to me. OK I was well over 6 feet tall at 14, so physical bullying wasn’t considered an option. . The Masters at the school (yes we didn’t have teachers, we had masters, mortar boards, we were always addressed as “Master . . . . . . . “, old fashioned isn’t the word) thought me lazy and indolent because I refused, where possible, to partake in any sport. Not that I hated sport, I hated changing rooms and communal showers. In this environment, anything that made you different was enough for the bullies.
So, unable to talk to anyone, unable to find information (I knew the name of it, that’s all) I just felt that I was a freak. God made me a giant, then emasculated me. A celestial joke,
I tried everything, stretching, vacuum, anything. God I was desperate, suicidal, scared and very very alone. If your children are like me, they could not face talking to their parents about something so intimate. I mean they are just realizing their parents had to have sex to have them, a really repulsive thought to a teenager! went through many, many difficult times, fell in love with girls but could never have the courage to form any kind of relationship, just in case we got too close, and I would have to be naked. Then they would laugh. (For information, I have an erectile length of approx 5 inches, a flaccid length of less than one half inch).
One day, to quote the Bard of Avon, “I screwed my courage to the sticking point”, you know what? She did laugh. Then went on to tell all and sundry. So I moved back to Birmingham to escape the shame and humiliation and fear. I hated my parents for having me, for having me when they were so old (Mother 40, Father 38) when, even in the 1960’s, the risks of genetic malformation was well known.
I then entered into the only world I could feel comfortable in, Academia. My first nervous breakdown was in 1986. I have had repeating episodes until the final one in 2000 resulting in my medical retirement aged 41 this year.
Then, when I was 36 years old, and newly on the internet, I discovered I wasn’t the only “freak” that it was more common than I thought. Was I relieved, I suppose I was until I tried to find more out, then the rages came. Then my final mental collapse. I survived to tell the tale, as you can see.
So, why am I telling you this? So you can prepare for the worst and expect the best. So you can understand the view point of an adolescent male. Women have different issues, can we as men understand motherhood, menopause, childbirth? We can try but never really, truly understand. Neither can mothers really understand their hypospadias boys. So you can prevent the pain and suffering, the emotional turmoil, the sheer heartache that MAY happen. I pray it doesn’t.
I have been alone with this all of my life till now. I have never had a partner, nor will I. I’ll never have children, a family of my own. Maybe this is a good thing to remove myself from the genome.
I’ve only started posting here to plead with you NOT to take the easy road of ignoring it. Or even belittling the harm it can do. In case you think my experiences are unique, I can tell you they aren’t. They are a common as the disorder itself.
Be gentle on yourselves.
I am a 52 year old man born with hypospadias, I have no bending of the penis but the urethral opening is on the underside of the glands. I have never had any problems passing urine and have a normal sex life but I have always been aware that I was different. I was always afraid that I might get an erection in the showers in front of other teenage boys while I was in high school. I knew if this happened it would be noticed.
I have been married twice and neither wife has had any problems with it. I have noticed that it seems like most of the stories I have read from other men with hypospadias seem to indicate that most men with this defect have smaller penises. Mine is about 5 and one half inches long and about one and one quarter inch in diameter. I am very self conscious about the small size.
I also suffer from social anxiety and I always felt very inferior in school and these feelings continue today and I am not sure if this condition has anything to do with it but the fact that I was different has bothered me since I was old enough to know that my penis was not like the rest of the boy’s. I have always wondered if there are any other men in my area of the country that have hypospadias.
I, like many who have contributed their story to this site, grew up with shame that I was not like the rest of my mates when it came to my penis. I have hypospadias with a urethral opening at the base of the glans on the underside of the penis and a typical mushroom head. I learned to control urinating at an early age but there were the odd accidents but that is normal with any kid. To those parents who have a son who has this condition I would say discuss it openly with him and give him the opportunity to decide for himself whether it is necessary for corrective surgery to be undertaken. In severe cases with young infants it would be appropriate for the parents to discuss with a good surgeon who is fully knowledgeable in this type of corrective surgery as to whether it would be wise to carry out surgery in infancy or to leave it until their son is older. Now on the subject of sex I can honestly say that this condition has never ever inhibited my sexual performance; in fact, rather the opposite and many a compliment as to the nice fulfilling feeling that the head gives during intercourse. I am a proud father of two teenage sons neither of who has the condition. The only thing that I regret is that my parents never acknowledged or discussed this condition with me as a child and as such I grew up with a shame that I was different to other boys when I need not have lived with this secret and the shame that went with it if my parents had discussed it with me.
I was happy to find out about HEA and it’s work. I was born with hypospadias and undescended right testicle. Surgery was performed to bring it down but not for hypo. It is not severe, just below the head where the frenulum would be. Unfortunately I remained small endowed which has caused some embarrassment a few times, high school phys. ed. situations mostly.
As an adult now, not too sexually active and it was interesting that a few sex partners referred to my member as Big Cobra Head.
Other than making it difficult to urinate standing up it has been all right.
I would encourage the parents of children with bad cases to get help early to make their life easier later on.
I came across this website when I was required to fill out a medical form and needed to put a name to my condition. It has uncovered memories and experiences I had long buried.
On the one hand, it’s gratifying to know that I’m not alone and to find others who relate to the scars, psychic and real, trivial and more profound, of this surgery. I too have had to clean many toilet rims over the years. I too have been shy in the locker room.
But I cannot relate to shame or anguish. C’mon guys, get a grip! It’s a medical condition, one that can be repaired, not a mark of inadequacy or a sentence to a life of misery.
I was born with several medical conditions. A cleft palate, imploded eardrums, a lazy eye. And mild hypospadias. I had one operation on my urethra as an infant, a second at about 5 or 6. I vividly recall the second operation. The trip to Manhattan, bonding with the boy in the next bed (whose operation was first, and who returned bandaged and with tubes everywhere – a shock for this 6 year old who thought the boy might have been castrated), examinations by teams of doctors, etc. I also remember ice cream and special attention and seeing the dinosaurs at the Museum of Natural History on the way home.
I was lucky to have parents who attended to my conditions. My cleft palate was repaired and I was given speech therapy. I had ear surgery and still have a moderate hearing loss – hearing aids help. If you think hypospadias is embarrassing, try wearing an eye patch for lazy eye on the playground in grade school and you’ll know what teasing means. But never have I felt deformed or disabled.
At age 13, I awoke at a sleep over with my best childhood friend with excruciating pain in my testicles. Talk about adolescent crisis. I was rushed to the hospital for an emergency operation for testicular torsion.This operation left faint scars on my scrotum.
I am now 56. Hypospadias has been mostly a minor annoyance. Yes, spraying during urination can be messy. Keep a special sponge handy at home, use urinals when you can, sit down when visiting friends. I have full, ramrod straight, normal erections – a little larger than average size – very sensitive around the urethra. My glans was split and the urethral opening is located below the glans. I am having an adventurous and satisfying sex life. I’m gay and have had many partners over the years. Some decades-long relationships, lots of sex along the way. It certainly never interfered with sexual pleasure. Some odd looks or questions when a guy gets up close and personal, but no complaints either. (This is a good time to interject that condoms might protect from embarrassment as well as disease. Always wear a condom!)
I know I carry the effects of the condition and the medical attention. It’s just part of who I am, but it has never shamed or limited me.
I will be 51 years old in November of 2005. When I first sat to compose this story, I was enthused because I had found a forum to express my feelings, with other guys who will understand. Now that I’ve started writing, all those feelings – some of which were really tough to deal with alone – have kind of come back to haunt me.
The first memory I have of my condition was when I was just a kid. I was around 7 years old or so. My sister, 5 years older than me, and I were playing and somehow I pissed her off. She kicked me in the groin. I know I don’t have to explain the subsequent pain but something felt “odd”. I ran behind our house – we lived back a lane that was about 1/4 mile from the road and no houses anywhere close by – and I recall taking off my shorts, and looking at my scrotum and penis. Why I did that, I don’t know – but I did. Seeing the urethral opening red and sore, in my mind it was as if my sister had injured me. I remember thinking she had somehow maimed my penis and I ran to my mom because I was afraid and humiliated. I had her look at my penis – why I didn’t to to my dad instead, I don’t know – but she offered very little other than a shoulder to cry on. For quite a while, I questioned in my mind if the kick from my sister had made my penis look like it did.
Neither of my parents were well educated. I’m sure if they had been, I might have been spared a little of the trauma. I had to deal with my condition pretty much on my own.
The next memory I have, which is sketchy, is that for some reason my mom and my sisters were talking about circumcision. This couldn’t have been more than a year later and possibly sooner. My second-eldest sister asked if her brothers were circumcised (I’m guessing now that there must have been a discussion among her friends or possibly it had been a topic at school, but in those days I kind of doubt the latter). Mom said that when I was born, she remembered the doctor telling her that I wouldn’t have to be circumcised but that my 2 brothers were. At the time I wasn’t completely certain what they were even talking about and I didn’t hang out to hear more.
For quite a few years after that, I saw other boys’ penises rarely but when I did, I noticed the difference in how theirs were shaped, and also the distinct urethral opening at the tip of their penis. I didn’t comment and I don’t recall any of the boys who had seen my penis ever saying anything about it. (Thankfully) I didn’t have any problems with urine flow although sometimes I did sit to pee – it wasn’t that I had to – I just did it occasionally.
When I was around 11 or 12, I was out on a bike ride. We lived in a rural area and I used to ride for miles and miles. My bike was pretty much my favorite thing and other than in the winter months there was rarely a day when I wasn’t out riding somewhere, either alone or with my buddies. On this particular day, I had stopped for a rest along side a small bridge. One of the boys who was older – if I recall correctly, he was probably 2 or 3 years older – stopped to say hello and we ventured under this bridge to explore as boys are famous for. Not much more than a drizzle of water was under there, but it was cooler out of the sun so we sat there and talked for a while. I had to pee really bad, so I walked over to the opposite side and did what I had to do. The other boy did the same, a few feet away. When he finished, he didn’t put his penis away and I noticed he was rubbing it. I didn’t know what an erection was then, but he had one. He told me I should try it.
Long story short, we ended up masturbating together for a brief time – it wasn’t that big a deal to me. It was, however, the first time that someone had made a comment about my penis. He asked me why there was no opening at the tip. I didn’t know. I told him I was born with it like that and he was satisfied with that answer.
Fast forward to 7th grade. I dreaded gym class like the plague. It was the first time I was ever going to be naked in front of a bunch of other boys and the thought wasn’t too welcome. As it turned out, though, not much happened. Like we all do, we checked each other out even though we pretended not to. I was actually relieved that a few of the boys were less endowed than me.
When I became sexually active, I was attracted to both men and women. I had sex with men, none of whom ever made a comment about my hypospadias (except one, years later). At 16 I had my first sexual experience with a female and was able to perform without a problem. None of the girls with whom I had sex ever asked or even seemed to note any difference in my penis.
When I was around 23, I developed a severe urinary infection and had to see a doctor. As he examined me, he gasped “You have hypospadias!” as if it was the end of the world. Great patient manners, doc. He asked if I was able to urinate properly, if I was able to achieve an erection, and asked if the erection was crooked. He offered no explanation of the condition even though I told him I didn’t know what hypospadias was. At last, though, I had a name for the condition and was able to look for literature at the library about it. There wasn’t much – at least not in layman’s terms.
I married and fathered a child. (a daughter) My sexual attraction has always been stronger for males, and I asked for a divorce since I wanted my ex-wife to have a happy, honest sex life with someone who could provide that for her.
Since that time, most of my sexual experiences have been with men. I always dread the initial exposure, but only rarely have I had any negative reactions. I am smaller than many of the partners I’ve been with. Erect, my penis is about 5″. Flaccid, it hangs just over 1.5 – 2″. I have never met another adult male with hypospadias – or perhaps I should say I’ve never met anyone with the condition who told me about it. Obviously it’s not something that straight men bring up as a normal topic of conversation, and I suppose the same holds true for bi or gay men.
So – there you have it. Probably a boring story, but it’s all true. I’ve lived, as most of you with this condition have lived, with the fear, lack of understanding, sometimes anger; wishing I had a penis that was like the other guys. More than once I considered surgery, but I just didn’t know if the benefits would be worth the expense, the pain, and of course, the risks.
I am very grateful that this web site exists and that there is a support mechanism for men who are living with hypospadias or epispadias and parents of children with those conditions. I urge parents to talk to your boy about it; do so gently but without fear and of course, without shame.
I knew I wasn’t alone, but I had no idea where to turn for a little support until my mother emailed me the link for this website. Thanks Mom.
My hypospadias surgeries were conducted over the years spanning ages 1 through 15. All told, there were 3. From age 15 on up, everything was fine. Until. . . . . . at age 28, I developed a urethral stricture in the area where the hypospadias surgery had been done. Nearly impossible to urinate and painful recurring infections. I was able to track down the surgeon who did the repair at age 15 for a referral. Though it was to another pediatric urologist, it was an excellent find and a great place to start. However, I would go under yet again for the urethral stricture procedure.
This procedure was some type of an “. . .oscopy” (sorry for not recalling exactly what it’s called). Basically it removed a flap of skin or “stricture” and opened up the narrow portion of the urethra to get things moving freely again. I was then to do “self dilation” with urethral sounds to maintain the proper urethral diameter. What a freakin’ inconvenience that was – sticking a surgical stainless rod in there to keep things dilated – EVERY MORNING. Brush your teeth. . . shower. . . shave. . . slide a metal rod in your WIENER! Try getting a prescription filled for that thing, by the way. Turns out, in my case, it worked for a little better than a year. Yes, things started progressively closing up again because of scarring from the surgery. Now here I am at age 30 on the eve of yet another procedure. And a big one, at that.
I will be undergoing a complete reversal of the hypospadias and urethral stricture repair(s) done over the years. However, this procedure is something I feel compelled to share with all of you.
Everything will be opened back up to the original opening half way down the shaft, in my case, and a skin graft from the lining of the inside of my mouth (about the size of your thumb) will be put in place. The graft(s) will heal over a 3 month period. The second procedure done at that time will close the skin graft(s) and penis around a catheter providing a very tough, pliable, and continuous “new” urethra and a permanent natural looking opening right at the tip. The catheter is then removed 1 week later. Done. No more self dilating, no more spraying when I urinate, no more sitting down. Here’s the kicker that means the most to me and everyone reading this. . . cosmetically, it will be better than anything done previously. I have seen color photos of the before, during, and after of this procedure, folks. Honest to God truth – I cried. Right there in the doctor’s office.
Thirty years later now, things have come around full circle to the point of birth as far as the surgeries go. A lot of bad memories of fear, embarrassment, and self-consciousness are coming back. It is very hard to focus on work and everyday life lately. But I’m here to tell you that I am VERY excited about this procedure. The doctor conducting the procedure is a professor of urological medicine at Wayne State University in Detroit, Michigan. He will be leaving his practice later this year (I got in just in time) to open – get this – a Urological Reconstructive Center in Oregon. This man is a saint.
I will be getting married between the 2 procedures this fall. My fiancee is VERY understanding and patient, and I love her even more for it. We both await the completion of this whole thing so we can have a really really really really really good honeymoon. . . .
I am a 27-year-old male with corrected hypospadias. I felt that I was “different” than other boys probably around the first grade due to the fact that we started peeing in the same restrooms. The boys would gather around and laugh at me trying to use the toilet. I think I had two surgeries but I am not completely sure of that. I know after the first surgery it would hurt really bad trying to bo to the bathroom. The second surgery was performed in the seventh grade and my parents just told me I was getting a “circumcision.” Yeah right! After two weeks of recovery, I was functioning like a healthy adolescent boy. I have had a couple of lovers over my lifetime, but I have never really accepted my “difference”. I am a little smaller sized than most male penises, but none of my past girlfriends have ever noticed anything different. However, I still can’t fool myself. Everyday I am remind myself of my deformity, and am still my one worst enemy. Until I can love myself I don’t think I will ever let anyone else love me back. As far as physically, all the plumbing works and my urethra actually extends close to the head of my penis. It is more of a psychological issue for me. I am treated with depression and anxiety, and find it hard to approach women; I am very self conscious in this regard. Knowing that I am not alone does help, and I hope by writing this that other men will know they are not alone either. If anyone has any good advise or tips on how to cope, feel free to email me at my address. Thank you and remember, sometimes being different is actually better.
I remember going to a extra doctor and laying down while being checked. The question came up of circumcision. The doctor very wisely advised to wait to make the decision. I was 5 or so at the time. Thank you Doctor who ever you are! I have that milder form coronal. However then I had transurethral prostrate surgery. The doctor made a cut to enlarge the opening and made it a bit worse. This urologist I find was not very well informed about hypospadias. But he was top notch to fix my BPH. I was in the Navy and Marines and in sports all through school. No one ever noticed or if they did I was not aware of it. I never ever met another person with the condition. I only learned the name of my condition from my Military medical records. Some years back I came across a site in Korea. Where for some reason they have a lot of it. I am so glad to get the information and support from this site. When younger it was little problem. Now I’m 69 and it gets to be a problem. Mostly if I stand to void quite often I look down and my pants are wet in front! very embarrassing! Also it is very hard to keep the smell of urine away sometimes. The doctor told me a repair would be a nightmare talking about skin flaps and a long time. Plus “we never do it for old men.” Even though I’m only one of 300 I have never ever even met anyone who knew what it was. I felt like the only one in the world. I have 3 children and 7 grandchildren and 3 great grands. All normal.