Men with hypospadias/epispadias:
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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
November 24, 2005
----
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 and let me and my
wife 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 when 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.
José
October 26, 2005
----
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
October 6, 2005
----
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.
September 3, 2005
----
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 fiancée 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....
July 12, 2005
----
I will be
51years 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
July 10, 2005
----
I am Henry, an Indian born in 1945 with hypospadias. as you all know it was war time and little medical facilities were available. my parents were happy because the only birth defect I had was a small crooked penis which nobody would notice when dressed up; because an astrologer had said to them while my mother was pregnant, that the child would have birth defect.
I was the only hypospadias child in our locality. so the womenfolk were much interested to examine my penis. As a child I was peeing standing with a little spraying, so occasionally my inner thighs got wet. At school, boys saw this extraordinary stuff and made their comments. Also elder girls were keen to have a close look at it. as we were wearing dhotis it was easier to conceal the penis while peeing, by going to a corner place. As I grew up elders started discussion about my penis and still i remember one saying "this is enough to fuck".
During my college studies I avoided public urinals and baths, used only closets,
because while wearing pants I had to sit down for peeing, else my pants would
get wet. I avoided company of boys as well as girls. When I was 12 I
think I had erections and found rubbing my penis was something interesting and
finally some hot white colored liquid came out. As it was so thrilling I
repeated this.
Later one girl was very fond of me and wanted to marry me. I tried to avoid her
by telling her that I would not have children, but she did not care. So I
contacted a physician and he told a corrective surgery was needed to have
children. I was ashamed to have the surgery and remain in hospital for weeks.
Also I was doubtful if I could sexually satisfy my partner, so I contacted a
girl who was willing to have sex with me and without showing her my penis made
sex with her. She did not know of any defect and had full orgasm and we
made love several times. This made me confident and I married the girl who
was fond of me. We made love almost daily but we had no children for four
years. As I was fertile I was sure enough that if my semen reached her
cervix, definitely she should become pregnant. As my opening is at the
joining place of scrotum with the shaft, the semen would not reach the cervix.
So one day i washed my hand well, peared the nails and cleaned and made love
with her. Then I collected some semen on my finger tip and pushed up in
the vaginal tract to the cervix. So some sperm definitely was near the
opening so I was sure it reached the goal (of course we used the temperature
method and made sure she was fertile). Wonderful enough- she got pregnant
and delivered a beautiful girl. After that we had plenty of sex relations and
without any assistance she became pregnant and we have five children now and
grand children too.
July 7, 2005
----
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. Yet, 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
June 23, 2005
----
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.
June 7, 2005
----
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.
June 4, 2005
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A secret life
Growing up feeling alone
Hide the scars and conceal the pain.
Afraid to be discovered,
A master of disguise,
Knowing we’re not just one-of-the-guys.
One piece of our body
Rarely seen by most,
Yet it takes over our lives
And our feelings of worth.
This weight can be heavy,
And not easy to bear
Until finally we find others
With whom we can share.
Others like us…
Who know in their hearts
That we are all so much more
Than the sum of our parts!
By: Chris Arnold, May 2005
Written at the 2005 HEA Conference, San Jose CA
----
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.
May 7, 2005
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Need Not Have Lived with Secret and Shame
I like many who have contributed there 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
January 28, 2005
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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
January 9, 2005
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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.
November 21, 2004
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That's what I said to myself three years ago when I was searching the the internet for other's 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 feel 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 am 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 name tag on me. Until the doctor 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 .
November 19, 2004
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I'm 51 years old and have only recently discovered the name of the condition that I have lived with all these years. I feel quite angry that despite having surgery to lower a testicle at the age of 18 my doctor never explained the condition of hypospadias to me although other students and doctors were invited to view my body - now I know why! Because I always felt that something was not quite right with my genital area although I had never seriously viewed other men's penises at that stage I think it left me with a real self esteem and personality issue that has affected my ability to form any lasting sexual relationship. Perhaps there's more to it of course than just the physical problem but I must say that I feel somewhat cheated by the lack of care shown by different doctors down the years. Of course I should have been direct and asked the necessary questions but ridiculous as it seems I felt very shy about such matters and now it's just a matter of seeing it through. I only write this in the hope that it will encourage any parents (or doctors!) to attend to this problem if it occurs in their sons - otherwise they may feel like me that they have wasted a lot of their lives.
November 14, 2004
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I didn't know anything was wrong with me until my parents told me that I was going for surgery in Louisville, KY. I didn't know then that it was going to end up being three of them. I never even knew what was wrong except that I couldn't stand to pee. All I remember about the surgery now is that I had tons of shots for pain. The doctor also got me a stuffed bear that I had the nurses and my parents sign. To make long stories short after the three operations and me still trying to pee standing the doctor didn't get it right. After I messed on myself being a teen I started sitting down like a girl. In the end I wish that my parents would have brought me up as a girl as I'm now a male-to-female pre-op transsexual and I've been living full-time since 1992. Before I started transition with my transsexuality I looked up my doctor in Louisville, KY and gave him a piece of my mind because I was so mad at the way things turned out.
I didn't know that my condition was called hypospadias until I found it on the web and then talked to my parents about it. I did do some research and found the Intersex Homepage on hypospadias. I ended up fathering two still-born boys and a daughter with a lot of health problems.
October, 2004
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“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
April 18, 2004
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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.
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Glad Had 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
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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 ½ an inch long and about ¼ 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 12½ 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
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Glad Surgery Was Not Performed
I was born in 1961 with a midshaft hole, a sub-coronal hypospadias, undescended left testicle, inguinal hernia and various other minor defects. I had the extra hole sewn shut in infancy, the inguinal hernia was done at six, along with removal of the atrophied testicle from my abdominal cavity. I had reflux, requiring VCUG's until I was 19, along with chronic kidney infections; I thought antibiotic tablets were a food group when I was in grade school.
I count my blessings. My parents had the good sense not to have any cosmetic procedures done on me other than removal of the dorsal hood foreskin. I have no chordee, strictures, or scarring, and the only complaint I can voice is the small caliber of my urethra means it can take a while to pee or pass semen. The abnormal anatomy under the glans is very sensitive to touch, and while I am not saying that what I have is a frenulum, I know none of my circumcised friends have a frenulum or any extra sensation there. I would not want anything done to change what I have.
I went through all the stuff you would expect a kid with one testicle and a mushroom pecker head would face growing up, but most of the doubt and pain was self inflicted. It would have been better had I known someone with the condition that I could relate to, but when you live in a town as small as mine was, the statistical odds of that happening were nil, even if people had been willing to talk about this in the first place.
There was a period in my teens where I had some ambiguous feelings about my sexual identity and adequacy as a male. I knew I could not compete with the jocks, as I felt the normal PE class dress outs were enough of a risk. Had I gone out for sports, my risk of being "exposed" would have been too high. I knew I could never take out cheerleaders, so I became a motorhead. Most of us were the skinny, funny looking or fat guys that hardly fit the teen Adonis image. We dated all the chubby buck-toothed girls nobody else wanted to be seen with, and I spent very few Saturday nights at home. I still felt somewhat less "manly" than the jock types in that I found myself wishing I had one of those beautiful, perfectly shaped penises they all seemed to have, and the perfect pair of balls. Now that I look back on it, I had more social life than the jocks did because I didn't have the demands on my time that sports imposes, and my standards for companionship were more realistic.
I think I am as well adjusted as I am today, because my clique in the teen years was more accepting of people for what and who they were, rather than what they looked like. I had only one comment from a girl about my hypo, and she thought it was kinda cool, and never made a comment about it again for the next three years we dated. She would also say "I bet I can find that nut if I look hard enough for it", as an excuse to grope, and of course, I'd give her about three hours to stop that :-). We simply made the testicle thing into a game. That's how we dealt with it.
I have been married almost 14 years to a woman that had never heard of hypospadias and cryptorchidism until I told her, and we went to the OB GYN about it when we knew the baby was going to be male. He is 9 now, and was born perfectly normal. As far as I know, no one else in the last three generations is affected.
I am willing to give freely of my time to any one who would like to contact me. I think the best thing any of us can do is provide outreach to the younger guys who can still grow up with some perspective if they get help in time. I am not a shrink or doctor, but I know I can answer questions and listen, as someone who has BEEN 'DERE, DONE THAT!
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Didn't Discover Hypospadias Until Adulthood
I was born with a mild form of hypospadias (coronal) where the opening of the urethra is located just at the base of the glans at the place where normally you should find the frenulum. I had what’s called a hooded foreskin.
When I was a kid, I often wondered why doctors always wanted to check my penis. I guess I never asked if there was something wrong. Nobody ever told me about the fact that I had a “little” difference called hypospadias. At age 9, I had to go to the hospital for something absolutely not related to the hypospadias and when I woke up I realized that I was circumcised. To be honest and to translate the feelings of the kid I was with adults words, I had the impression that my physical integrity had been violated. Later I’d learn that it was what’s called a “cosmetically done circumcision”. I was still ignorant of the reasons of that intervention and quite unhappy with the results but nobody talked about in the family.
During my college years I had many problems with the perception I had of my body. I had no particular interest in looking at the penises of my friends but I was ashamed to be the only cut guy among all the students I saw. It was more a cultural problem as you know that, here in Europe, circumcised boys are an exception. As I was participating in some sports, I always tried to hide my penis from all those “normal uncut guys”. Two years before the end of my college years, I decided that I had to adapt to the way my penis is and I decided not to hide it anymore. I saw that some of my peers were looking at me but I never heard any comments except from my best friend who shocked me a lot by laughing at me. My goal was to adapt and that was a part of the process. However, at that time nobody asked me about my pee hole. At the same time I began to have some adventures with girls. I have to confess that I was afraid of potential comments, but there were no problems. I guess that girls don’t have so much interest in the external appearance of a man and his penis. That’s more a problem of “self perception” for the man. One of my girlfriend’s once told me that my urethra was not in the normal place but I didn’t care. In fact I had never seen what the normal place should be. At that time, when I saw a pornographic movie, I wasn’t focusing on the penises of the actors.
I discovered the word hypospadias when I had to read my medical record before the army. That was a real shock to me to understand that my penis was not only different because I was cut but because I had a congenital malformation. I was really disappointed that nobody ever explained the situation to me, the issues related with hypospadias and the surgical treatment of it. If I only had had the choice, I would have waited and I would have chosen the more appropriate course for me. I mean, as it’s my body, then it should have been my right to decide. The only obligation of my parents or of the doctors would have been to explain to me what hypospadias was all about.
At that time, I already was living with the girl who became my wife. I’ve a normal marital and emotional life with her. She doesn’t care about my hypo but I don’t really dare to speak with her about what my life with that malformation has been and still is today. As you see, my efforts to adapt do have some limits. In addition, we have beautiful children.
Since the hypospadias is an important part of my life, I always have to live with the impression of being different. So I have educated myself by reading in various websites and clubs about hypospadias and circumcision on the internet. It’s a relief to hear that I’m not the only one. I also discovered that it’s a hard experience to adapt to having this condition. I tried to create contacts with others guys with hypospadias and I was lucky to find a friend here in Europe with the same condition as me. We spoke a lot on the net and decided to meet to compare our situations. It was marvelous for me to be able to speak and to compare our situations.
Jehanj
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The first thing I remember is being in the hospital, in an examining room that was very large and had room for lots of other patients. It was in the early sixties, and I was probably somewhere around 5 or 6 years old. My grandmother, who raised me, was in there with me, and the doctor was holding a basin up to my penis as I sat on the high table. He wanted to check on my urine flow, and when he asked me to urinate, it sprayed every which way you could think of. I guess I knew that something was wrong.
After that came the series of operations. I don’t really know how many. Maybe as few as two (but I doubt it) and maybe as many as four or five. I know that I had to go into the hospital and go under general anesthesia for the operations, and that I had to stay over in the hospital for several days each time. I remember bandages and gauze being wrapped around my penis, and the dressings being changed regularly, as I had to urinate through it, sitting down of course. One of my doctors was also a plastic surgeon, a rarity at that time in medical history, so I was lucky.
My parents were divorced before I was two, and my father and I lived with his mother. My father was neglectful and abusive, essentially an alcoholic. He came home from work, ate the dinner his mother cooked for us, then went upstairs to shower and change clothes so he could go out drinking and chasing women. He was sullen and miserable except to women he was trying to impress. I don’t know if my condition made him reject me as a son; he probably would’ve done it anyway. I feared him because he hurt me physically. Since he was my only role model, I grew up to fear men (a real problem for a homosexual man!) and thought that men would only hurt me if they were near me. My father remarried when I was six and left me with my grandmother, who then raised me. I was glad to see him go.
However, I do remember one very “primal” scene with my father. He was in the bathtub one time, when I had to go in to urinate. Of course, I sat down to go, and when I was done I passed him sitting in the tub. I stopped, looked down at his penis (which was not like mine, grown up or not) and then stared him directly in the eyes. It must have disturbed him. He said absolutely nothing at all.
Due to my “condition,” I was pitied by my family and those who knew, and, since I also had lots of allergy and respiratory problems, I was sick a lot but also overprotected by my grandmother. She always wanted to be a nurse but had to drop out of the Sixth grade to help her mother at home (during the Thirties). Her husband died of stomach cancer, and she was a nurse to him. Now she was a nurse to me. However, being a woman and it being the Sixties, there was no one to be a male role model to me or give me the psychological help I so desperately needed. I was bullied by the other boys, I couldn’t stand up to urinate like them. I would go to school and not urinate all day until school was over, then I ran home to go. I was a sad little boy with horribly low self-esteem.
So I grew up that way, feeling inadequate as a boy and a male, afraid and in awe of other males, but attracted to them in a powerful way. I longed to have a male friend, especially a father figure, who would be everything my father wasn’t: strong, self-confident, protective and guiding. I never found that man.
I guess it was during high school that I decided I had better try to “teach myself” to urinate standing up. It was tough getting used to but I mastered it pretty well. My urethral opening is at the base of the underside of the glans, where the frenulum should be. It surprises me to know that I only have a mild case of hypospadias. I cannot imagine having a worse case, as mine was enough to have a major impact on me. Sometimes I long to be completely normal, but I know that this is a matter of only several centimeters. I don’t tell anyone about my condition, and no one who sees my penis comments on it, so I let it alone.
When I got to be college age, I decided I wanted to be circumcised. My foreskin was very odd looking, I think due to the fact that the doctors used some of it for the operations. I could actually take a piece of my foreskin on the underside and stick my finger through it, like the doctors had made a hole in it so they could anchor my penis down so it wouldn’t move during the surgeries. Anyway, it was ugly and not a normal foreskin, so I wanted it off. I was and am very pleased with the results, although I would like a normal foreskin.
I am 43 years old now and have been through over 3 years of psychotherapy, and am much better with men and with my self-esteem. I am rediscovering all the things I couldn’t do when I was a boy, like sports. Turns out I like sports and was just overprotected and made to think I was delicate. I am, and always have been, comfortable with being gay, thank goodness. It was relating to other men and seeing myself as a man that was the problem. I know I can’t change the past, and I look forward to the future and am very happy being a real gay man.