Happy at Six Months

My son had hypospadias with chordee repair recently at six months of age. I was a little scared, anxious, and worried with the realization of a potential three hour long surgery on such a young infant. However, I am so happy that we decided to have the surgery done at six months versus 8-9 months of age. If was crawling or scooting himself around it would have been so painful! So, anyone who is contemplating the age to best repair the hypospadias–I would definitely go ahead at six months old! He is currently healing well and happy!

Name Withheld

Teen with Epispadias

I am 16 yrs old and I was born with epispadias. Growing up with the defect has been really hard for my family and me. You find yourself always trying to hide the facts. I have to wear pads because of my incontinence and I find it hard to do things normal kids do. I must always watch what I do. When I was 14 yrs old I told my best friend my condition and he was fine with it. He understood the problem. When I turned 15 I felt the courage to tell some more friends that were close. They didn’t take the news as well as my best friend. They ended up not talking to me and I was alone. It is very hard growing up and hiding the facts. School would probably be the hardest. Knowing that if you slipped on your words or news got out you wore pads or have epispadias just imagine what might happen. Sports are another issue. I can’t do crew or swim because I’m afraid of what others might think of me when they see me in a Speedo or tight pants. I know I can’t just run and jump in a pond if I wanted because I wear pads. So things are limited to us who have the problem. You find yourself have problems with doing stuff with friends. I currently have a girlfriend who doesn’t know. I don’t really know when the right time will be to tell. We all know high school things happen, I don’t want a sexual time to come up and her not knowing about my problem. So this is a word of advice to parents or kids who have it. Watch what you say and know who you say it too. Always have confidence in everything you do. So parents sit down and talk to your kids about their problem consult doctors.

Josh

Hard Life Challenge

I was born in northern Colorado back in 1980 with hypospadias and I had a surgery when I was about 1 year old. In my surgery they repositioned my urethra to the top left side of my penis from the bottom side. When I was little in about 3rd or 4th grade I remember a kid in school laughing at me after seeing me in the bathroom peeing out of the side of my penis. From that day on I new I was different from all the other kids. This has been a very psychologically hard to deal with problem while growing up and is still to this day. I have never really had any sort of sexual life due to the possibility of being rejected or turned down due to my condition. While growing up and watching friends get girlfriends, going on dates and eventually getting married and having family lives, I was living and still am living a very secluded life. I have been living with this for 28 years now and am still trying to get by day by day. After doing some research about this condition I have found that this is becoming a more common problem in newborns today. But even at that I have never in 28 years meet a single person with this condition. I would like to meet others with this condition and see how they have coped with this problem. I hope you post my story because this has been a really hard life challenge to deal with.

John

Surgery at Age 17

I had noticed a difference in my penis when I was very young. My brother (who was 4 years older than me) and I would take baths together. I had extra skin covering the head of mine and his looked to me more like a mushroom. I recall that I asked my mom about it and she told me not to worry, that I was just fine. As a young adult I was told that the reason I still had a foreskin was because I had an allergic reaction to a drug that was given to my mom during my birth and while I was in the area of the hospital where folks can view the newborns, I stopped breathing. Someone noticed that I was turning blue and alerted a nurse. They didn’t want to put me through any more trauma and so I was left with foreskin.

Growing up, I didn’t have any problem urinating, although it was usually not in a straight stream. I had no problems having an ejaculation either although, down the line I found out that other guys had much more of a “spurt” than I usually had. Rarely did I ejaculate with any projectile. It felt good but it pretty much just skipped out rather than shoot out.

When I was in seventh grade a guy came up to me in the boys locker room and as we were alone he unzipped my pants and took my penis in his hands. Before I knew what was going on he had completely retracted my foreskin. Although no one ever told me this, I was always afraid that if I pulled back on this skin it was be like tearing flesh off my body. My foreskin had never gone back, even when I was fully erect. It never covered my penis head completely either, just the tip was exposed. So this guy pulls back my foreskin and it doesn’t hurt me at all. The sight was not too pleasant though. I had pale yellow flecks under this foreskin that I later found out was called smegma. I am surprised that there wasn’t more after so many years of never being exposed and surprised that I never had any problems because of that. After being retracted, whenever I was erect the skin would now go completely back on its own (and my hygiene improved a great deal). Retracting the foreskin brought to my attention that my slit was very large compared to the few other penises I had seen (I got an early start sexually, “thanks” to an overly horny cousin).

The slit is on the underside of my penis starting near the top of the head and is about 1/2 an inch long and about 1/4 of an inch below the slit is a small hole making it look like an exclamation mark! I urinate from the larger hole but if I squeeze the larger hole together while I pee, the smaller hole lets drips of urine come out (I was curious to see how it worked). At seventeen I had my mom take me to a urologist because I wanted to have a more “normal” looking penis. The doctor told me I needed to have some scar tissue removed and to make my erections less tight. I never had any pain or problems with erections and I told the doctor this but he seemed to think it was a problem so I had this corrective surgery. Honestly I don’t notice much of a difference. My penis has never pointed straight out and still doesn’t (it leans to my left). I don’t recall the reason why but I never went back to the doctor for any more surgeries or even follow-ups.

As far as reactions from sexual partners goes, I suppose I have been fairly lucky. I have had numerous partners, mostly other males, and I can think of four that seemed to react badly to the “look” of my penis. It isn’t a small penis in length or girth (7″ long and 6″ around at the widest point, it looks a bit like a club, being wider at the top and narrowing down). Only one of the 4 that seemed to have a reaction actually told me that my penis scared him. The other three just stopped in the midst of having sex and we ended up masturbating. I suppose the honest guy was best but they all made me feel a bit on the grotesque side. That’s a small number compared to the other people who seemed to have no reaction at all to my condition. I am with a partner of 12-1/2 years and I asked him if he recalled his feelings when he first saw my large slit and he honestly doesn’t remember it making him feel anything negative at all. I only recall a couple of other guys who even mentioned it to me (one asking if I used to have a “prince albert” — a pierced penis).

I hope my story will in some way help anyone who may be going through troubled times because of this condition and show you that there is hope for a good and fulfilling life. Thanks for reading and I welcome your feedback.

David

Surgery for Severe Hypospadias

I have read many stories in the HEA e-group giving a negative light to surgery. I am here with a positive story.

I am glad my parents made the decision to “put me under the knife”. The only mistake they made was doing it too young. My parents educated me well about it from the moment I could talk. The nurses and doctors were also very open and helpful.

In 1974 I was born with severe perineo-scrotal hypospadias and chordee. The corona was attached at the perineum and the phallus divided the scrotum into two parts with a testicle on each side. The meatus was peritoneal, anterior to the anus.

I was first seen by Dr. Edward S. Tank, an associate professor of surgery in pediatric urology at the Oregon Health Sciences University, in 1975. Tank’s policy was to wait until four years of age for a staged reconstruction. My parents felt that I psychologically needed the repair done prior to that, so they found a plastic surgeon, a Dr. Melvin, that was willing to do the procedure. He attempted a one-stage procedure. This was done at age 2 and was a failure. I was left with a discontinuity between my perineal urethral opening and the end of the neourethra, which ended at about mid shaft. The phallus was foreshortened and buried with ventral cutaneous scarring. I had to sit to urinate.

My parents returned to Dr. Tank and he proceeded to set things right. In 1979 I was given a tube graft, made from a full thickness skin graft taken from the left groin and hip. The penis was freed up from the scrotum and subcutaneous tissue. A tunnel was made through the scrotum exiting 4mm away from the previous perineal hypospadias. The tube graft was brought up through the tunnel and between the corporeal bodies. The corporal bodies were then buried in the mons pubis and an incision was made around the mons pubis to bring two skin flaps around the penis. The chances for success were predicted at around 50%, before the surgery. It was successful.

Over the course of the next two years I had two dilatations of the urethral tube and three urethroplasty surgeries before the neourethra and native perineal meatus were successfully joined. In the process infections occurred, fistulas developed, and hair grew in the urethra. In 1983 a scrotal abscess developed which had to be incised and drained, yielding ~10 cc. of purulent material.

In 1986 I went in for a penoplasty with translocation of the scrotum. This was decided after several months of depotestosterone injections made little change in the size of the phallus. The phallus was foreshortened with a diminished amount of dorsal penile skin that seemed to tether the penis. The scrotum extended up laterally and superiorly to the penis. During surgery these scrotal wings were developed as flaps, and translocated inferior to the penis. The skin on the ventral surface of the penis was mobilized below the corona, buttonholed, and then translocated to the dorsum of the penis to add skin length to the dorsal aspect of the penis. A meatoplasty was also performed with closure of two glans wings on each side of the meatus. About three years later I went in for a final surgery to remove hairs growing in my urethra.

My current status is an erection length between 3″ and 4″ (8-10 cm) and an erection circumference ranging from a maximum of about 6″ (15 cm) at the base and a minimum of about 5″ (13 cm) just below the corona. I have an erection that points slightly downward, a good urine stream most of the time, hair still growing in the urethra, hair growing on the outside of the shaft, an extremely sensitive penis, scarring, and frequent urinary tract infections. I have never had any problem getting an erection; however, due to the high sensitivity of the penis I have to put much more effort into controlling ejaculation. I also get sore very easily during long, vigorous intercourse. Intercourse is often painful, both during and afterwards. The pain is primarily in the urethra and is a burning sensation, like a UTI. The first time I have intercourse with a woman without using a condom, I almost invariably get a UTI (unless I am careful about evacuating the bladder immediately afterwards and drinking lots of water).

I know for a fact that I am fertile. As far as I know, there is no history of hypospadias in my family. I am glad my parents had it corrected, I only regret that they did not listen to Dr. Tank. The first surgeon they took me to was a plastic surgeon, not even a urologist. Tank was able to correct both what the first surgeon had messed up, and what was messed up in the first place. Tank specialized in pediatric urology, had been doing it for years, and worked at a the pre-eminent facility in the state for medical care and research. The fact is, my situation got better and better with each surgery. My advice to someone who plans to get their child surgery is; wait until the child is at least 4 years of age and make sure you get the very best surgeon. That surgeon should be a pediatric urologist, not a plastic surgeon. The biggest mistake is to make a rash decision.

I have been with many women and most are accepting of what I have, especially if they care about me. There are those who will reject, but that is part of dating no matter who you are. You have to be willing to suffer if you want anything out of life. Just remember to work on your skills as a good lover (especially tongue skills). I have been with women who detested me and women who adored me. Just be careful not to dwell on the problem too much, that can be a turn-off for some women. Whatever you do, DO NOT BE AFRAID OF RIDICULE. Most women will not ridicule you. In addition, there are other things to live for besides sex. Sex is a fleeting gratification that does not bring lasting satisfaction.

To the parents of HS kids; don’t be afraid to make a judgement call. I do not resent my parents at all for putting me through the surgeries, in fact, I would resent them if they hadn’t. Also, educate them about it from the moment they are able to talk. They should know the facts from the very beginning, and chances are, it will boost their intelligence. I knew I was different from the very beginning. At age five I knew what my best friend looked like. I had to sit to pee until I was five, fortunately this was corrected shortly before I started kindergarten. I was able to stand up and pee in the urinals like all the other boys, but 5 and 6 year-old boys tend to look at each other’s penises and I got some flack from the other boys about my small size.

Around the time of my last surgery, at 14, I decided I wanted to test out my plumbing so I lost my virginity with the girl that all the boys in the neighborhood lost their virginity with. She was very caring and fun and made me feel good and comfortable about sex. I found out that my plumbing worked and became much more confident as a human being. I began feeling comfortable with both men and women. I am generally not very open with people about my condition, but I am that way with every aspect of my life. I have found that the few people I have told, both men and women, have been accepting.

I don’t want to speak for anyone who has one of the milder hereditary forms of hypospadias, but for those with the more severe forms, which are possibly environmental, it is almost imperative that surgery be done. Just be cautious about who you go to.

Marc

Traumatic Surgery at Age 6

I was born with a mild (coronal) case of hypospadias. I went through the first six years of life with my original, uncorrected penis before having surgery. To the best of my recollection, there were no major problems before surgery–no chordee and a fairly complete foreskin, just a urethral opening lower than it should be. Of course, my penis seemed completely “normal” to me, since it was all I had ever known.

Surgery at age six was traumatic. Fortunately, much of the detail has faded from my memory, but I remember extreme embarrassment about the entire ordeal. I’m sure that much of the embarrassment stems from the way my parents handled things (though they meant no harm, they had little information from small-town doctors and therefore did not make the wisest decisions). I remember my parents privately telling my teacher about the surgery and encouraging the teacher to lie to the class and say I was having surgery on my arm. Obviously, the full truth would not have been appropriate, but it sent a signal to me that it was something of which to be ashamed. I also remember lying in bed in the hospital after surgery (I was in the hospital for several days) on my back with my legs propped up in some sort of contraption so I couldn’t damage the sutures. I was completely naked underneath, except for a blanket draped over the contraption, exposed to nurses, relatives or anyone who walked into the room. I felt vulnerable and somewhat violated in that position. I also remember the catheter and my refusal to obey the nurse and just “let it go” and pee while I was lying in bed. Primarily, I remember the DRAMATIC change in appearance once I finally got the see the finished product after surgery (I can imagine the surgeon could have said something like, “it ain’t pretty, but it works”). That caused a sense of confusion, shame, and even a sense of loss for what I no longer had. To a large extent, those feelings remain with me 20 years later.

I went into all the above detail about surgery to help people understand that age six is not a good time for surgery. A six-year-old is old enough to retain most of the ordeal in his long-term memory, but not old enough to really understand what is going on. I often wonder if I would have gone through childhood with better psychological health if the surgery had been performed when I was an infant or toddler, or if surgery had never been performed at all. I suspect the answer is yes, though I’ll never know.

Following surgery, I became intensely curious about other boys’ penises. I think I wanted to see if anybody had a penis similar to mine. I compared with all the other boys in the neighborhood, but nobody had one like mine. At adolescence, friendly comparison progressed to sexual activity, though it took several more years before I would admit that it was no longer just curiosity and I was in fact gay. Nonetheless, I have long suspected that hypospadias was a contributing factor toward my sexual orientation.

Now, at age 26, I have adapted fairly well to the situation. There are some physical problems, but they are relatively minor. I am able to urinate standing, but occasionally urine comes out in multiple streams or at a weird angle, making it nearly impossible to accurately aim. Surgery left me with an abnormally large urethral opening; without exercising great care in the shower, soap or shampoo can easily enter the opening and cause extreme burning. Additionally, the underside of the glans sometimes hurts if my penis gets constricted just so. I think these problems result partly from a suture that eventually came undone after surgery. The follow-up did not extend long enough to catch this problem, and I was too shy and embarrassed to bring it up as a child. Now, I don’t know that I would trust a surgeon to touch my penis.

Since the physical problems in my case are relatively minor (thankfully), I’ve dwelled more on the cosmetic appearance, which I find very unappealing. Fortunately, I’ve had enough positive experiences with sexual partners to gradually gain more confidence that it’s not as big a deal as I think it is. One time I did experience rejection, but the guy never saw my penis; he simply rejected me when I told him about it. But otherwise, my experiences have been positive and I am happily involved in a committed relationship that is both emotionally and sexually fulfilling. However, I still cannot shake the sense of loss for the natural, albeit imperfect, penis with which I was born.

Name Withheld

A Hypospadias Story

“I don’t have much time. What do you need to see me about?” the Dr. snapped as he looked at his watch upon entering the exam room. I sat there, a 19-year-old with cornfield written all over my face. I was scared, but I came here for advice and I was not going to leave without it. “I think I have something wrong with my penis”, I replied, “It does not look the way that I think it should. It’s crooked. ” The pants dropped and the examination began while the conversation continued. The Doctor apologized for pretending to be short with me. He said that most patients with a ‘Hypospadias’ don’t know how to explain it and waste a lot of time trying to explain the situation. He went on to explain that I had anywhere between 5 and 10 previous surgeries, depending on stages and would place his bet on 7. This highly recommended Urologist from Oak Brook, Illinois went on to say that he was not qualified to operate on me but referred me to a Chicago surgeon who performed several corrections a week and learned from the pioneers of the present surgical techniques.

I am now 45 and still find it amazing what you can recall from a very early age. At that time I had never heard of hypospadias. I did remember being in the hospital several times as a child, but thought nothing of it. The room was filled with other boys my age with tubes running in and out of each of us. I thought it was just another ritual of being a kid. Then the memories flooded back. Remembering talks with my father that he was disappointed that I could not do the things my brothers did. I remembered him frequently inspecting my penis as a child and making comments, “Keep it clean,” or, “You’re gonna have a hard time finding a girlfriend. ” But I was a resilient child and just ignored him as being a parent. All of my friends had parents and most of them said stupid things as well.

During my childhood, I also had a deep desire to learn about religion and spirituality. Though I was an Air-Force Brat, and moved yearly, I would meet people and attend various churches to see what they taught. Though I really never agreed with a particular church, I liked the people. I think this is why I have such a feeling of spirituality with me, even today.

When I began to feel different was in high school. I knew from gym class that I was not like the other guys. I had an out though, as I also had an inner ear disorder that would make me dizzy for days on end and grade 5 acne nodules all over my body. To this my father told me that my hormones were always a little out of whack. I managed to be dismissed from gym due to health reasons. I also learned to go to the restroom during class, not during breaks. I was a good student, but instead of sports, I elected for Speech, Drama, Chorus, and Band. Yes, I knew I was gay but I did not know exactly what that meant, and thought it was a phase. I kind of thought it was because of my crooked dick. I remember speaking of it in jest with some of my friends as, ‘the problem’.

For some reason during my senior year of high school, I had to go for a psychiatric evaluation. During that meeting at an Army Post, I told the Doctor that I thought I had ‘the problem’ and I wanted it looked at. I also told him that I thought I was gay. Being an Army Doctor during the 70’s, I knew he would not like to hear that. The Doctor conferred with my parents. I never heard another word about it except my father once again had words of wisdom, “No son of mine needs a shrink or a doctor. ” That statement conflicted with the fact that I had periodic visits to the Dermatologist and the to various other doctors regarding my ‘Menear’s Syndrome’, dizzy spells.

I went on to college on a music scholarship where I met and got engaged to a girl. Though I really liked her, I could not bring myself to be sexually intimate with her. A friend of mine had moved to Chicago and asked if I wanted to come up and visit. I did and I saw it as my chance for escape, so I took it. I said goodbye to my family and friends and decided that I would try to fix myself. We set up housekeeping with another friend, a nurse, who helped me find the support to continue my journey. She made sure that I saw a counselor before I made the appointment with the surgeon.

It was now, January of 1980. I took the referral and the renowned surgeon informed me that my surgery would be a snap. I would be out of the hospital in a week and I had nothing to worry about. I had a job and took a week of vacation time and scheduled the repair. I even told a joke before I went under.

An elephant was making his way through the jungle when he came upon a naked man. After a moment, the elephant asked the man, “How do you breathe through that thing?” And then I remember waking up. It was the next morning. I was sore but curious. I looked at my dressings and there was some sort of green ooze making its way to the surface. The nurse walked in and asked how I was doing. I covered up, but she looked at the dressing anyway. Then she left the room. She returned with my surgeon and another physician who literally ripped the dressings from my stomach, sides, and legs. This was to be the first of a series of failures. Instead of being in the hospital for a week, I was in bed for 30 days before dismissal. Then recovery at home for another month before returning to work. I was glad that I had already had a support system in place.

Then six months later, the same experience transpired. Six months later… This skipping record continued for a total of three years, resulting in six, failed repair attempts. In July 1983, my surgeon informed me that he would not operate on me again. He blamed the failures on my acne. My dermatologist did not agree. I was 23 and devastated. Though I was not able to resume my education, I was fortunate enough to retain my employ. I had 2 jobs, one for money and the other for benefits. I managed to keep a good support system, but with no future in sight, I looked at alternate therapies.

My main income was from bartending. My boss told me that he knew a faith healer that cured him of cancer and said that I should give it a try. I had nothing to lose. It was interesting and I learned some relaxation techniques. After 3 visits I was told that because I was gay, God would not heal me. By now, I had used up almost all of my options. The last came from a friend of mine who had moved to California. He had been cured of his homosexuality and was to be married. Another friend of mine had already changed his lifestyle and was currently married. Once again, I had nothing to lose and I had to see what it was all about.

Upon my arrival, I discovered that my married friend had bandages on his right arm. No one would tell me why. Time went on and I had sold everything I owned and started looking for a job. I stopped and had lunch with this friend and he cried to me that they poured hot coffee on him until he went through with the wedding. That afternoon I got the rest of the group together and arranged for police and a U-Haul. We moved from the group home and were safe. But I had used up all of my options. I called my sister and asked if she could get me home from California to South Carolina. I had a choice of transportation, but chose a bus, as I wanted time to think. P.S. Never take a bus across the country.

But I did have time to meditate and to see so much beautiful country. At one stop a young mother and her two children sat in the seat in front of me. The mother asked if it was ok for her son to sit beside me. I agreed, but during the movement, he hurt his head on the seat. At the next stop I purchased some first aid supplies. The mother explained that she could not afford to pay me back. I did not care. I just wanted the young man to feel safe. Later that evening I fell asleep. The next morning I witnessed the most incredible sunrise as we approached the Grand Canyon. A sensation of peace overwhelmed my being and I just started to pray.

“Doctors can not heal me. Religions do not want me. I am a good person. I know that you, God, love me and I need your help. I don’t have anywhere else to turn. ” I cried. I cried for what seemed like hours. A few days later found me at the bus station in Columbia, South Carolina where my sister was waiting for me. In her hand was a magazine article about a miracle drug for acne called Accutane. I made an appointment with a local Dermatologist; three months later I was cured. My skin was clear. Then I noticed that another miracle had occurred. The dizzy spells that I would need to see another Doctor for had stopped. The last one I remember having was before that morning near the Grand Canyon.

This was a healing time in my life. I was able to reconnect with my family and to get to know my parents as people. It was never my father’s intention to say cruel remarks and he apologized profusely. My parent’s discussed at length and on several occasions some of the obstacles of my birth to this point in life. They did make it known that doctors and psychiatrist told them at the time of my earlier surgeries, never to discuss it with me. It would only confuse the issue. My support system continued to grow. Later that year, my eldest sister came around with yet another magazine article about Hypospadias and the doctors in Norfolk, Virginia who pioneered the surgical techniques used at that time.

Dr. ‘s Horton and Devine in Virginia told me they would be able to help me within three procedures. Again, I was fortunate because I was able to transfer from my previous position in Chicago to a lesser position in South Carolina. It allowed me to have insurance again. This time I found more of my healing. In the spring of 1984 I started the next round of corrections. As promised, with two additional lesser surgeries, I was able to urinate standing up by the summer of 1985. Before that time, the opening was at the base of the scrotum and the underside of the penis was open to the tip of the glans or head of the penis.

Since that last surgery, I made my way back to Chicago where I have a good life for the most part. I have wonderful friends and extended family and we make sure each other are doing well. Starting in 1988, I began to have problems urinating as the urethra would have a tendency to close off. My current surgeon tells me that it is due to excess scar tissue. Every three years I have a dilatation and a cathetorization. This summer, 2004, I will be scheduled to have another one.

But three years ago, I had the timing to tune in the television as, ‘Is it a Boy or a Girl’ was being broadcast on the Discovery Channel. After that show I went to the internet and found that the second annual meeting of the Hypospadias Association of America was set to meet in Denver a few weeks later. I can not tell you how cathartic it is to meet others with similar conditions and stories of struggle and survival. This year, we will be enjoying our fourth meeting in Toronto, Canada as the Hypospadias and Epispadias Association. It is so good to know that times are changing and support is available to give and receive. Most importantly, we don’t have to lie about who we are. We are men with birth differences. I was always taught that it’s good to be different, now let’s live it!

Jim

Thank God I’m Not Alone

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 .

Willie

A Plea Not to Ignore the Condition

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.

Simon

Self-Conscious But No Major Problems

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.

Ron