Author Archives: WebMaster

Need Not Have Lived with Secret and Shame

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.

Bob

Get Help Early

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.

Raymond

Not a Mark of Inadequacy

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.

Name Withheld

I Was Born with It Like That

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.

Larry

Full Circle

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. . . .

Name Withheld

More of a Psychological Issue

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.

Dario

We Never Do It for Old Men

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.

Jose

Living for Each Day

It is late at night and as most nights, I am having trouble sleeping. My life and all of my memories have been severely clouded with pain, depression and shame. I was born with severe epispadias and have endured six surgeries which began the week of my birth and continued until I was thirteen. As a result, my penis is very different for the norm, in no ways considered good socially except for being wide at the base. All through school I kept myself well hidden until one day during the end of gym class, my secret was exposed. This day is only one in a series of humiliating ordeals that I have survived. Needless to say that when a fellow boy saw my deformity, I was a prime target for numerous months to come until luckily I moved away.

In my case, now that I am an adult, I have had the beautiful experience of being a father to a normal boy. I would never wish this curse on anyone no matter how evil they may be. So, when my son was born and was healthy, I thanked God. I am heterosexual and have had only a handful of sexual partners, one being my wife at the time. I was married for nearly ten years until my wife met a normal man and I lost her but not my son. I am a single father and everyday I must face myself and the pain that is deep within.

I have read many of these stories and find some ease within all of the them. Yet, even with counseling which I had in the past, I cannot help but feel inferior to most men because of the focus of society on sex. I have never been an outgoing person due to my body. There are times in which I feel secure and good about my body but then it will be lost as I confront the world.

The women that I have been with have said that it did not matter but of course it did. They would never admit to it so as not to hurt me. Recently, I have not had any sexual partners and have become very unsure that I will ever have any again. Every day, I do my very best to not think about my body and carry on with each day. et, I know that deep within my soul burns a pain that will never go away and it is my role as a father that give me my will and zest for life.

I do not think that most men with this would freely admit to their pain but I do and I confront it daily. I wish that I could be a bright light of hope for someone but I am merely a man with epispadias who is living for each day. I fill my life with thoughts of helping people and any thing else other than sex. But I am human and a man so it does become extremely difficult to have desires but not act on them for fear of ridicule. It is a very cruel cycle that I experience in that I desire but also fear that which I desire. Unfortunately, I did not see an end to this and continue to struggle with it. Sometimes, I feel that I will never again experience love and sex with a woman because I am not up to social sexual standards.

Society is a very unkind factor in our lives. I feel that the only way I have survived is by keeping my secret and acting as if I were normal on the outside. I do not know if my writing here will help but after reading the other posts, I felt the need to include my thoughts. Although my writing is possibly depressing, I do find so much enjoyment and peace in life. I have so many things to be thankful for and I hope that others with this or other deformities can find the greatness in their lives regardless of the daily struggle with their body and the views of others.

Sam

Severe Epispadias

After reading the other stories posted here, it is apparent that my experiences are not completely different from those I have read. It was a bit surprising (well, not really) that no one else seems to have suffered from or grown up as a youth with “severe epispadias. ” I was also surprised to see that what seemed to be a large number of gay men writing the stories, which as one mentioned in itself, there would certainly seem to be a strong case for homosexuality and these two types of birth defects. Any doctors looking for a new book topic?

Growing up was more difficult than most, I believe. Six surgeries that transpired from being a new born to teenager. A seventh was to be in the works, but frankly my trust for doctors as a whole and my own parents made it virtually impossible for me to go under the knife again. And since this surgery was to be elective, well let’s just say it never happened.

From the normal wetting problems as a young boy to the ever growing concerns of never seeming to be the same as the other boys (and then young men), there have been self-conscious issues with me throughout my life. By the time I was in high school and the standard boys locker room requirements with physical education classes, it’s no wonder the other boys thought (or knew) I was gay before I did. After all, how could I not stare at them when they were so different from me?

Needless to say, adulthood has not improved much. There have certainly been one or two men that had their special place, but for the most part I tend to find myself alone. If anyone out there thinks that boys can be cruel, they have no idea how cruel other men can be. I would have to presume that if I were heterosexual, the same would be said for the women. I mean after all, it’s all about size no matter what the sex… isn’t it!

Not having read a story posted here from anyone that seemed to have a similar condition, I can honestly say that the emotional and psychological scars are as difficult as or possibly more difficult to deal with throughout life than the physical ones. Anyone who thinks differently does not know what they are talking about, nor has the experience to know any better.

But for now, thanks for letting me post my story. Perhaps this will have a positive end result or at least stem another story or two. So for now, my best to those who took the time to read what I had to say.

Christopher

Never Too Late

I was born in 1940 with epispadias. At that time, repair surgery was postponed till a boy’s penis grew big enough to work on. That delay was medically necessary at the time but could be emotionally draining for the boy. So though I had some preliminary surgery when I was six, the major repair had to wait till my penis grew enough, till I became thirteen. I wanted and needed that surgery more than anything else, because I wanted a penis that looked like my dad’s and my friends’. From birth my penis looked as though it was slit along the upper side from its tip to about three quarters down its shaft. If I would pee standing, I would squirt around and never hit what I aimed at. I did not want other boys to see my penis. I was shy. I hid. I felt I was a mistake. When I masturbated, I always did it alone. So the repair operation was my big hope. The doctor used my foreskin to repair the slit and the result was so beautiful I could have jumped for joy. But then infection set in and much of the grafted skin died and had to be cut away, extending my hospital stay to about thirty-five days. They were days of indescribable terror for me. More and more skin died and had to be cut away piece by piece. As a boy of thirteen entering manhood, I dreaded the frequent trimmings of dead skin. I dreaded even more that the infection would get out of control and lead to the amputation of my treasured penis, forcing me to face adolescence and manhood without it. But antibiotics beat the infection and permitted a second operation to graft the surviving pieces of skin back on again. That operation was a success, and I remember the doctor calling in many of the hospital staff to see the final results. I was happy and proud of it. I finally had an effectively functioning penis, allowing me to hit what I aimed at, but it was scarred. I knew it would never look as beautiful as it was before the infection. But it worked. I could pee standing without showering the boy next to me. When I masturbated, the semen came out just where it should. As time went on, my penis grew enough to attain an erection of nearly four inches in length, five and a half inches in circumference at its base and about four and a half inches in circumference just below its head. My erection is nice and hard, though it is a little softer on its right side.

My penis will always be scarred. For years I thought that was totally bad, but I later discovered an advantage even to the scars. The people who actually matter to you, your really good friends, whether guys or girls, think a scarred penis is interesting, a sign you’ve “been around the block. ” I will always have emotional scars. I decided over those following years to confront them by living out a motto that later became a well-known saying–“it is never too late to have a happy childhood.” At summer camp I joined other boys as we exposed ourselves to each other. And I would go to the socially acceptable edge of bodily openness in group showers, baths and nude swims.

Today I function well and am happy, though I do have an unfulfilled ambition. I want to do something to help other kids with penis problems, especially abandoned kids, especially in poor countries. I know of organizations that bring healing world-wide to boys and girls with facial birth defects, and they are not shy about their projects, for the face is not a taboo. They send fund raising appeals with before and after photos, openly talk about the kids’ physical and emotional problems, and report case histories. Why can’t there be similar openness with helping kids with penis problems? I hope HEA can bring healing to kids’ penises as these other organizations bring healing to kids’ faces. That is one reason I became a member.

John