I remember going to a extra doctor and lying down while being checked. The question of circumcision came up. The doctor very wisely advised to wait to make the decision. I was 5 or so at the time. Thank you, Doctor, whoever you are! I have that milder form, coronal. However then I had transurethral prostate surgery. The doctor made a cut to enlarge the opening and made it a bit worse. This urologist 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

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

Now that I have read 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, and, as one mentioned, 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 for me was more difficult than for most, I believe. Six surgeries that transpired from when I was a newborn to when I was a 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-consciousness 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 who 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 do they have the experience to know any better.

But for now, thanks for letting me post my story. Perhaps this will have a positive 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

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