Hypospadias
Hypospadias
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Personal
stories: living with hypospadias
Messages
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Hypospadias?
A twist of fate - your penis isn't like most of the others
I am always happy to answer
personal questions, and offer support or information. You can email me at this
email address: thepenisdotcom "at" yahoo.com
Other
articles you might wish to read:
malehealth.co.uk on hypospadias
and
another
malehealth.co.uk article on hypospadias and its impact
I
strongly recommend anyone with this problem to look at and join the
relevant support groups (see links below) - you will learn you are not alone!
Hypospadias, which is an accident of birth, is a condition where the opening of
a boy's penis is found somewhere
back along the shaft, anywhere from tip to base. His penis often has other differences such as penile twisting, a "hooked" appearance
because the glans bends down, and a hooded, incomplete foreskin. Hypospadias may not be that well known, but for the men
who experience it, the consequences can be devastating, because it strikes at the root of
"normality" - and, as I suggested on the penis size page, for most men, being up there with the rest of mankind is a crucial issue.
What is hypospadias?
In short, it's a condition where the penis doesn't develop in the way it
usually does. The result is that the penis opening (the pee-hole, or, in medical
terms, the urethral meatus) is located somewhere on the underside of the glans,
or the shaft, or even as far back as the junction of the scrotum and penis. In
addition, sometimes the foreskin doesn't develop fully, but forms a hood over
the top of the glans, perhaps with adhesions to the glans. The glans may be
flattened, and split on the underneath, and the head of the penis may tilt
downwards due to the tightness of the tissue inside the shaft - a condition
called chordee. Last but not least, there may be a twist in the penis shaft,
with the head rotated on an axis to base of the shaft.
You can see
pictures of hypospadias on this website: follow this link.
Why does it happen?
There are many suggestions, but no definitive answers to
this question. What we do know is that during development of the male baby, it
is crucial that testosterone is produced in his tissues at a certain stage in
his growth, around 6 - 8 weeks after conception. If this isn't produced, or if
his tissues are insensitive to it for some reason, then his physical sexual
development will not be normal. In the mildest case, this will mean that the
hypospadias takes the form of a slit on the underside of the glans or it will
appear on the shaft just below the head of the penis. In the more extreme cases,
it may lead to intersex conditions where the child is born with a mixture of
male and female characteristics.
What might cause this?
The first possibility is that a boy has a genetic mutation which makes
his body tissues insensitive to testosterone - a condition known as androgen
insensitivity. There are a number of mutations which
vary in severity and lead to varying degrees of androgen insensitivity - obviously, the greater the resistance to testosterone, the
more obvious the difference from the norm. Besides being born with a slightly
different penis, a boy with
androgen insensitivity may show less development of male features at puberty
than other boys, so it is important he gets the medical support he needs. These genetic mutations are carried on the X
chromosome, which a
boy inherits from his mother. This means that in some cases at least, an
affected boy's father will not have hypospadias, although his mother's brothers
may do so.
The most extreme form of androgen insensitivity is a
condition known as Testicular Feminization Syndrome, in which a baby has the
male chromosome but its tissues are completely insensitive to testosterone, and
it develops as a female, although lacking ovaries and womb. This is a very rare
condition, affecting perhaps 1 in 65,000 male (as defined by chromosome
structure) births.
Second, some scientists have suggested that estrogens
administered to the mother while the baby develops inside her can affect the
process of male sexual development; this seems reasonable, since estrogens do
prevent testosterone acting effectively on the cells of the male body. The
problem we seem to be facing is that many chemicals used in the modern world
mimic the effect of natural estrogens in the body. Some of the chemical
responsible have
been identified as plasticizers used in many plastic materials, some common
pesticides, and pollutants produced by burning rubbish. And another source of
environmental estrogenic compounds is the high levels of estrogens put into
sewage systems through the use of the contraceptive pill.
The truth is, it's a complex issue. But when there are other factors, like
chromosomal abnormalities (Klinefelter's syndrome is sometimes a suspect), they
will generally leave enough clues for a diagnosis. It is in the simple cases of
mild hypospadias that an explanation of what has happened may never be
forthcoming.
Of course, in medicine, when you start looking for factors that occur
together, you can always find correlations between one thing and another. But
this does not mean they are cause and effect. However, I feel I should include
these observations, for the sake of completeness if nothing else. The March 2001
Journal of Urology reports a study in which older women seemed to have a higher risk
of giving birth to baby boys with severe hypospadias. The risks are still very
small, of course, but the findings showed that women 35 years of age and older
had a 20% higher risk overall of having a baby with severe hypospadias. The
researchers analyzed the incidence of hypospadias according to maternal age
among women in New York State and California between 1983 and 1996. The
investigators found that there were 1.2 to 3.1 cases of hypospadias per 1,000
births in women under 20 compared with 1.8 to 3.7 cases per 1,000 women over 35
or older. Dr Harry Fisch, one of the authors, stated: "Maternal age may be
the single most important factor besides the genetic profile of the father and
mother." Journal of Urology 2001. Volume165: pages 934-936.
And to show just how complex this issue really is, and also, I suppose, how
wrong we might be to start reading too much into correlations between
hypospadias and other factors which could just be mere coincidence, another
suggestion which has been made recently is that if the mother follows a
vegetarian diet, her boy may be more likely to have hypospadias. There are a
number of links to articles on this suggestion in the table below. My opinion is
that there isn't enough evidence to suggest a clear connection at the moment. It
is possible there is an intervening risk factor - for example, women may be
drawn to vegetarian diets for some unknown physiological reason, and it may be
this difference in physiology which causes the hypospadias, not the
vegetarianism.
One fact that needs to be more widely known is that a drug called
Propecia, designed to reverse hair loss in balding men, can cause hypospadias if
it is ingested by a pregnant woman. It works in balding men by inhibiting the
conversion of testosterone to one of its more active derivatives, DHT, which is
responsible in the fetus for the more important aspects of male physical
development. If you want to know more about this FDA approved drug, there is a
link in the table below. The point is that the male reproductive system is a
comparatively fragile one, and clearly its normal development can easily be
disrupted.
How does hypospadias develop?
During the development of the male baby, two folds of tissue fuse together
along the length of the penis to form the urethra. If the process of fusion
stops before it reaches the tip of the penis, the urethra will open in the wrong
place. When the fusion stops just below the tip of the penis, the urethra will
open on the underside of the glans. If the fusion stops a bit sooner, the
opening is located on the coronal ridge or just below it; this is called coronal
hypospadias. These are the mildest forms of hypospadias, although they can still
be accompanied by all the other aspects of the condition mentioned above, and
sometimes the skin overlying the urethra is paper-thin for some distance back
down the shaft.
Sometimes the urethra may develop no further than the base of the penile
shaft, in which case the head of the penis may be markedly bent downwards,
because the groove in which the urethra would have developed is shorter than the
penis itself.
How often does hypospadias occur?
Again, it's hard to say. I have seen estimates ranging from 1 in 100 to 1 in
1000 baby boys. What does seem clear, however, is that the frequency of
hypospadias is increasing, alongside rising rates of infertility in men and
decreased sperm quality. Scientists have suggested that some of these male
reproductive anomalies have doubled over the past twenty-five years - and the
finger of blame is being pointed at estrogens in the environment. The highest
current estimate for the condition seems to be 1 in 100 births.
What can be done about it?
The current medical view is that if it is advisable
surgery should be performed to correct the condition as soon as is possible -
certainly within the first year or two after birth. 'Advisable' means that the
hypospadias is severe, or the problems associated with it are disfiguring, or
the urethral opening is in a position where the boy will have to sit down to pee
- a devastating psychological problem, particularly at school - or the
hypospadias induces frequent urinary tract infections. In the hands of a
competent, experienced pediatric surgeon, the chance of a good result from
surgery are high, although in a small minority of cases there are
complications such as urinary tract fistulae (a hole opening up on the penile
shaft) and scarring, which have to be
operated on again. If the hypospadic penis is already small, as it sometimes is,
this may ultimately reduce its size even further.
In the more severe cases of unusual sexual development,
the Intersex Society of North America have made a strong statement that the
issue of surgery should be left until the individual concerned is old enough to
choose for themselves what to do about their ambiguous sexual development. While
I would support this view in principle, I don't think any responsible
pediatrician or parent would leave an unambiguously male child who had a
correctable moderate-to-severe hypospadias to suffer the psychological effects
of this difference as he grew up. A more difficult question arises where the
hypospadias is mild. Should surgery be performed purely for cosmetic reasons?
Such a penis is likely to be fully functional and its owner will probably be
able to pee standing and have normal sex later in life.. In this case the risks of surgery may be unjustifiable. On the other
hand, I have met several men with mild hypospadias who have not had operations
to correct it, and for whom associated issues like torsion of the penis, issues
of size (small penis size, that is), the psychological effects of changing at
school, peeing alongside other men in public restrooms, and generally feeling
'different' have been devastating, and have ultimately prevented them from
establishing successful intimate relationships, whether they identified
themselves as gay or straight.
Perhaps in the end the key is to find a doctor you
trust - for parents of baby boys a paediatric urologist, and for older boys and men a
urologist: make sure he has experience of the problem, and don't be afraid to
question him or her. Any doctor who respects their patients will understand this
attitude. And if they don't respect their patients, I would be reluctant to
trust them.
What's the likely outcome of hypospadias?
So much depends on the psychological issues. Some men
face the most appalling difficulties and overcome them; some just don't find it
as easy. The most inspiring man I met when I was writing this page had been born in the 1940's with no penis
to speak of and only one testis. He was operated on when his father got back
from the war and discovered the problems with his now five-year-old son's penis. The
techniques of the time could only give him - as an adult -
a penis that was about one inch long when flaccid and maybe one and a half
inches long when erect, with one non-functional testis, so he was taking testosterone
replacement therapy for life. He could stand to pee, but the operation had used
hair-bearing tissue that meant he had to shave his reconstructed penis every
week. He could orgasm, but not penetrate a partner, and he had no semen to
ejaculate. Yet despite this he had established a successful career, married and
lived comfortably with two adopted children. On the other hand, I have met men
who have been almost unable to live with much less extreme difficulties. So how
can one generalize?
The answer seems to me that if a man is capable of
sexual fulfillment, is reasonably happy, and can establish intimacy with a
partner, he need not suffer unreasonably. But these are easy words to say. I
have come across message boards on the internet with desperate pleas. One of them
was from a 14 year old who clearly had no-one to confide in and felt alone with
his problem. He had not been operated on, and his penis, he said, "was like a
J," (curved down at the end in classic chordee), "I have to sit down to pee
because it sprays everywhere, the foreskin won't fully go back, and I'm
desperate because I'm too embarrassed to talk to anyone about it".
Another was
from a man who had had nine operations in adult life, ultimately unsuccessfully,
to correct the condition. Although he now had a penis smaller in erection than
when he started (due to the scar tissue), he said: "I am glad I tried because at
least for a few months I felt normal while I could stand up to piss." And a
third man wrote to me to say: "My hypospadias is a 'situation', not really a
problem. No-one has ever actually told me anything about what happened to my
penis. I only know that it is 'bent' and the urethra is at the join of the glans
to the shaft, where the frenulum normally is. There appears to be scar
tissue on the base of my penis and I have a non-functioning 'eye' where a
urethra would normal discharge. As far as I can tell from self-examination, and
a memory of a medical check done on my penis when I was about eight years old,
my urethra was not satisfactorily formed before birth, and it may have been
surgically corrected. Luckily the urethral meatus pees forwards and not
downwards. The glans of my penis forms a sort of hood. I do not appear to
have a frenulum and there is no foreskin on the underside of the penis, whilst
the area at the base of the glans on the upper surface still has the remnant of
a foreskin. I was born in 1956 in Sydney Australia, hence I am 44 years old. I am capable of urination and ejaculation, and my erection does not appear to
have been affected."
Your story, please
So - would you like me to put your hypospadias story -
as boy, man, parent, partner, gay, straight, whatever - up on the net for others
to learn from or share? It doesn't matter whether your hypospadias is mild or
severe, the story of your experiences will benefit someone.
And if you have a picture, or pictures, to share
that would be even better - men rarely get to see other examples of this
condition, even if they are gay - and not often even then. Email me at
thepenisdotcom "at" yahoo.com . There are several accounts of living with hypospadias at the
bottom of this section, just below the links table. Most of them are by guys who
refer to feeling different from everyone else, and
being isolated psychologically because of this feeling.
Epispadias
A
more severe version of hypospadias - where the bladder and penis may not form
correctly - is called epispadias. The opening of the penis will be on the top
surface of the penis, anywhere between the end of the glans and the perineum
(between anus and testicles). You can get more information by joining the support
group mentioned below. You can submit your story to the Hypospadias
Association at http://www.heainfo.org
Click
to read personal accounts of hypospadias sent in by readers of The-penis.com
The Links
There are several groups dedicated to Hypospadias, where
you can exchange messages with others who have this issue in their lives. Do join the
groups,
because the support is exactly what anyone associated with
hypospadias needs to gain a sense of self-acceptance and mutual support!
Teenager
with hypospadias or epispadias?
A support group for teenagers with hypospadias or
epispadias.
Hypospadias
& Epispadias Association Web Site
The Hypospadias & Epispadias Association also has a web site
with
recommendations of surgeons, personal experiences, and information about
any forthcoming conferences on hypospadias.
Psychological
effects of
hypospadias
A theoretical research project by a man from The Hypospadias & Epispadias Association.
Mothers
and dads with hypospadias boys support group at Yahoo groups
A Yahoo! group for moms and dads of boys with hypospadias.
As the founder says: "My son was born with a hypospadias and was repaired at
the age of 7 months, and then again it had to be repaired again at 7
years, it is so much easier to go through with a bit of support and
that's what this club is all about."
Yahoo! groups
hypospadias club
Yahoo! groups support group for hypospadias (chiefly parents of boys with the
condition). A very close-knit forum.
Other supportive and very useful links
Messages
from the original hypospadias support group
I have personally edited and archived all the messages from the
original (the first) hypospadias support group, which has passed into
history. You can get to this immensely useful and superbly written store of
information from the link on the left.
These messages are really good for someone coming to
terms with the condition...they reflect how much the guys who joined
this club in its early days needed to be validated by hearing other
people's experience...I urge you to read them.
Abnormal
Development of the Penis-Male Urethra
A useful site by Dr David Hatch with pictures
of the abnormal development.
E-medicine
Very comprehensive
resource for medical professionals.
Our
stolen future - hypospadias
Our Stolen Future is, say the authors of this
website, "a scientific detective story that explores the emerging science of
endocrine disruption: how some synthetic chemicals interfere with the ways that
hormones work in humans and wildlife."
You might want to also see the links on the condom page, where there are
three references to possible causes of urethral irritation, which can be a
problem for men with hypospadias because of the larger opening.
These are the endocrine disrupter articles, although some of them are very
technical, and probably irrelevant for most people trying to come to terms with
the condition:
Rachel's
environment and health weekly
Another detailed piece on sexual
disruption by environmental chemicals.
CDC
Media Relations Hypospadias Trends in Two US Surveillance Systems
A general and informative article on
the increase in Hypospadias by the Center for Disease Control.
This publication is good on
links and personal
experiences of those whose sexuality doesn't conform to the normal.
Hypospadias:
A parent's guide to surgery
An informative and useful piece from a
"'user's" point of view presented by the Intersex Society of
North America. NB. I do not think all
hypospadias is the result of intersex conditions: sometimes it is, but
sometimes it is just an accident of birth (i.e. a congenital abnormality,
cause or causes unknown).
Other articles/resources/organizations
You can always find more
information by doing a search on Google for Hypospadias, Intersex, penile
abnormality, Testosterone Insensitivity and similar keywords
Intersex Information
Androgen
Insensitivity Syndrome Support Group
For parents or anyone who faces the issue of their own
Androgen Insensitivity there is a support group: a great resource: outspoken, campaigning, voluble.
United Kingdom
Intersex Association
The United Kingdom Intersex Association (UKIA) is an organization which works on
behalf of intersexed people. (They say: "Intersexed means born with
anatomy or physiology which differs from contemporary ideals of what
constitutes 'normal' male and female.") Their aims: "To educate, inform and campaign
to remove the shame,
secrecy, social prejudice, ignorance and stigmatization surrounding
intersexed conditions;
to campaign against the use of surgery and other medical treatments
for coercing intersexed people to physically conform to cultural
definitions of 'normal';
to campaign against the widespread practice of withholding
information from intersexed people regarding their conditions."
Hypospadias Forum
UK hypospadias help and support with information
and links.
Visitors since Nov 29 1999
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