Hi I am Ky and am the founder of the yahoo club Mums with hypospadias kids.

My son was born in 1992 with moderate hypospadias. Back then I had no access to computers and didn’t do any research into the topic, I was just told that it had to be fixed (and who was I to argue; I’m not a doctor). Boy, if I only knew the things I know now. Don’t get me wrong; I would have still had it corrected, but I would have had the power of knowledge at my side to fight inexperienced doctors.

My son was 7 months old when he was operated on, and all went well although at postop appointment a doctor stated to me “Oh! he has made a bit of a mess with that one.” This was all that was ever said.

When my son was 2 years old, I noticed that he looked like he only had one testicle. This had to be repaired by surgery; not one doctor had picked up on it before I noticed it.

As my son grew, I noticed that he was very embarrassed by the way his penis looked. Mind you, there was so much skin around the head of the penis, it almost looked like a hammer, so I understood his embarrassment.

When my third son was born in 1999, he was born with an undescended testicle, so since I had to go to a specialist anyway I decided to take my first son along too and ask the doctor’s opinion. While she was having a look we found three fistulas, what were these holes from, I had no idea (I have since learnt that fistulas are like blowouts in the urethra). Now it wasn’t a question of whether to have him neatened up or not; he had to have surgery anyway. Both sons were operated on the same day in February 2000; what a horrible day that was.

My first son’s catheter dropped out twice and was reinserted twice. At the postop appointment, we found that one of the fistulas was still there and leaking. It was devastating to think that he had to be operated on yet again. It has been 5 months and we have recently discovered that the fistula has closed over, YEAH!!!!

I now have a club where I help other mothers learn through my experience and try and help them by offering support, knowledge and most importantly friendship.

Hi, my name is Rebecca, and my son’s name is Will. Will was born with severe hypospadias. At birth, the doctors could not determine his sex because of the placement of the urethra and the undescended testicles. X-rays confirmed that he had no girl parts, but we still had to wait for the chromosome test to come back. This was an awful experience for a new mom who was sick for 9 months of her pregnancy. The day after Will’s birth we saw a pediatric urologist. He confirmed hypospadias and told us about the surgery options. We decided to start surgery as soon as possible. We did not want Will to have any memories of this, as it was very traumatic. We will of course tell him about it, but we did not want him to remember any pain or trauma. The first surgery was done when he was about 9 months old, and they straightened the penis, brought down one testicle, and laid the groundwork for the new urethra. The second surgery was when he was about 15 months old. During that surgery, they rebuilt the urethra to extend to the end of the penis, brought down the other testicle, and fixed a hernia. All in all, Will is a healthy little boy, with no physical signs of his condition. When he looks at himself, he will not know that he ever had a problem. All he will know of it is what I tell him. I hope this gives encouragement to all anticipating surgery that things can go well, and we wish everyone well. Thank you.

Rebecca

My son was diagnosed with severe penoscrotal hypospadias with chordee at birth. He was never able to stand to void; he had to sit down. All the doctors told me it would be better for him to have the surgery at a young age before he turned one. We saw three or four pediatric urologists before we found one we felt comfortable with. I was very scared and uneducated about the whole procedure and the outcomes. We actually had surgery set for several different times and I always backed out of them. Then one day my son came to me and said, “Mommy, why can’t I stand and pee like daddy?” It broke my heart and I explained to him and asked him if he wanted to have the surgery. I explained to him that it would hurt of a little while, but the doctor would give him medicine for the owie… So with his help we decided to do the surgery. My son was five when he had the procedure done. The surgery took about 5 long, long hours. The first few hours after surgery were ok until it came time for him to go potty for the first time. They wouldn’t let him leave the hospital till he went, and it took hours before he would go.. He had to go so bad and he would start to go a little bit and then would just freeze up and scream and cry; it was a horrible feeling and then I thought I made the wrong decision on the surgery but not for long. It took him about 6 hours till he finally went to the bathroom.. The first 5 times where very very painful for him but by the next day he was back to his normal self. The only time it would hurt was the first time going to the bathroom in the morning. His surgery was only about four months ago so we really don’t know the outcome yet, but his urologist says it looks great and he is optimistic about having to have anymore surgeries. One thing though is it took my son about three months to even try going to the bathroom standing up.. He was afraid to…. He thought if he went potty standing up that if he wanted to ever go sitting down again he would have to have another surgery… About the right time to do surgery is when you feel ready to, don’t let nobody pressure you into it if it don’t feel right…. I am glad I waited to do my son’s when he was older… He at least can understand a little better what was going on and what was going to happen. For who ever reads this I want to say Good Luck and God Bless you and your children.. Children are so fragile please be kind to them….

Carrie

My son was born with a hypospadias. When the pediatrician that examined him the morning after his birth told me, she briefly explained what it was and said, “But don’t worry. After surgery he’ll have a beautiful penis!” (My husband was not there — he had gone home to get some well-deserved sleep.)

When he was three months old, we took my son to see a pediatric urologist, who I did not like. He had no bedside manner, which led me to have no confidence in him. My husband has been in the health care industry for quite some time. He asked around and the guy had a good reputation. However, we moved a few months later and prepared ourselves for finding another doctor.

We both work for a hospital system with its own health plan. There is not a pediatric urologist on staff, but there is one urologist who handles all the hypospadias corrections. Regardless, we requested that our son be referred to a pediatric urologist, but our request was denied. Off we went to see the guy on staff…

The doctor was confident that he could correct our son’s level 1 hypospadias, so when our son turned 11 months old, he had the surgery.

I couldn’t believe my eyes when I removed his diaper for the first time! Everything was black and blue! And because we had to double-diaper a squirmy little boy, I lined up people to come and help me that week he was recovering. (Just to have someone entertain him while I changed him.) As the week wore on, everything started to look much better. After eight days, the catheter was removed with no complications.

On his follow-up visit this April, the doctor told us that the surgery was so successful, we would not even have to tell him he had a hypospadias — that he looks no different than other boys. My husband and I were, quite frankly, relieved. We will make that decision as he gets older. Our concern is that he NOT grow up with the stigma that he is different from other boys.

I must admit — I read a lot of horror stories about corrections gone bad and was very worried. However, this guy did a wonderful job — and our son looks perfect!

Shannon

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

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

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

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

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

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