This brochure is about the
shortest possible, easy to understand, comprehensive introduction
to PNE. Since it's hard to read in the printed format, we
offer the actual contents below for your reading pleasure.
Pudendal Nerve Entrapment
Do you have these symptoms?
1. Pain in the central sitting area,
rectum, or external genitals.
2. The problem is not going away
on its own.
3. The problem is not responding
sufficiently to treatment of any kind.
4. The pain gets worse when sitting
and better when not sitting.
5. The pain has no apparent cause,
such as infection, injury, or a back problem.
If you have some or all of these
symptoms then you may have Pudendal Nerve Entrapment (PNE).
At a minimum you must have 1, 2, and 3. Most people with
PNE have all five.
What is PNE?
Pudendal Nerve Entrapment (PNE) is a nerve
condition causing pain for no apparent reason in the area
served by the pudendal nerve: the rectum, central sitting
area, and scrotum and penis or vulva. Pain is usually worse
when sitting and less when standing, lying down, or sitting
on a toilet seat. No one pain pattern dominates. Pain can
be in just one area, several, or all. It can be on one side,
two sides, or the middle. Frequently there are also urinary,
rectal, or sexual problems.
PNE is often misdiagnosed as prostatodynia,
nonbacterial prostatitis, idiopathic vulvodynia (idiopathic
means unknown cause), idiopathic orchialgia, idiopathic
proctalgia, idiopathic penile pain, coccydynia, Levator
ani syndrome, and for those with pain at the ischial tuberosities,
as ischial bursitis.
PNE is a form of Pudendal Neuropathy (PN).
Neuropathy means nerve damage or disease.
What Causes PNE?
The cause of PNE is similar to Carpal
Tunnel Syndrome (CTS). The pudendal nerve has become entrapped
due to your particular body's structure and lifestyle. In
CTS too much repetitive wrist motion is the usual lifestyle
culprit. In PNE prolonged sitting is the usual precipitator.
This includes normal sitting, cycling, riding mowers, truck
driving, etc. Injury, nearby surgery, constipation, or pelvic
intensive activities such as weight lifting may also cause
PNE to start.
In the case of too much sitting, excessive
sitting pressure causes nerve or ligament irritation, which
causes enlargement, which causes more pressure. A vicious
cycle is born, causing the pain to increase gradually or
suddenly. After this has occurred for awhile, the nerve
begins to misbehave even when not sitting. Scar tissue may
develop. The nerve is now "entrapped."
What should I do first?
The first thing to do is stop making the
problem worse. Minimize your sitting time and when you do
sit, sit on a cushion with a cutout. This should be large
enough to avoid pressure on the ischial tuberosities, the
rectum, perineum and genitals. Don't try to be a hero and
"tough it out." If you are engaging in a painful
activity such as cycling, stop it altogether. The more pressure
the nerve receives and the longer it receives it, the more
likely irreversible damage will occur, and therefore the
lower the chance of successful treatment.
What should I do next?
The second thing to do is accept your
condition for what it is. Receipt of bad news initiates
the well-known process of denial, anger, depression, bargaining,
and finally, acceptance. This is the Cycle of Acceptance.
The reason you must come to accept your condition is that
if you don't, you will be less rational. This will cause
two problems: you will probably make your condition worse,
and you will not be able to self manage your case as well.
What should I do third?
Develop a diagnostic plan. This involves
studying information about PN, making a tentative self-diagnosis,
and then going to see the experts. Further details are on
our website.
Is PNE treatable?
Yes. The sooner treatment begins the better.
The main forms of treatment are:
1. Minimize sitting pressure or
anything that provokes pain.
2. Steroid injections in places
where the pudendal nerve may be entrapped, to attempt to
shrink surrounding ligaments and tissues, which could reduce
nerve pressure. Combined with less sitting, this has cured
many cases.
3. Nerve decompression surgery.
If steroids fail then surgery attempts to remove structural
impediments to decompress and free up the nerve. Surgery
is usually, but not always, successful.
The PN Support Community
For further information please see www.pudendal.info.
There you will find a wonderfully friendly
group of people with PN who can help you in many ways. We
offer these forms of support:
1. Information in the form of
documents, images, and links.
2. Group discussion, through
forum messages.
3. Networking, by contacting
people you meet.
First study the Frequently Asked Questions.
This gives a complete overview in easy to understand layman's
language. After that, explore the website. If you conclude
you may have PNE, see the List of Doctors and contact one.
You may also want to read the group discussion messages
or even participate in the discussion.
Good luck! We look forward to helping you.
The brochure is designed to be easily printed
by yourself or given to a printer or copy shop. You can then
distribute copies to doctors, therapists, and so on in your
area, or even an organization that can distribute them for
you. This is one more way we can educate doctors and the public
about PNE. The more of this is done the sooner the average
case of PNE will be correctly diagnosed.
If you would like to distribute brochures
to an organization, please announce your plans to do so. If
the organization has already been contacted we will let you
know. This way we can keep track of who has received them,
and avoid duplication.
The document is two pages, 8 1/2 by 11
inches, with 3/8 to 1/2 inch margins. It is designed to be
printed at 100% of current size in single color ink. For those
who want to spend a little extra money to get a better looking
brochure, the titles are in blue. This would require color
copying or two color printing. We suggest at at least 24 pound
paper, with the pastel paper color of your choice. Light blue
looks great.
Try printing the PDF or Word version yourself.
If the results are not good enough, use Save As to save the
file (we recommend the PDF version), copy it to a floppy disk,
and take it to a printer or copy shop. We have tested that
the PDF version works perfectly with Kinkos in Atlanta. They
even handle brochure folding.
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