“…For Family & Friends of Pudendal Nerve Entrapment Sufferers”
What does it feel like to suffer from Pudendal Nerve Entrapment or Pudendal
Neuralgia?
Pudendal Nerve Entrapment is a rare and extremely painful disorder. Sufferers have
described the pain as feeling like “burning acid in their pelvis"...."like their bladder
and bowel were on fire", "the same sensation as getting soap in your eyes, only in your
pelvis"...."like you have a hot poker trapped in your bowel or vagina"...."like razor
blades are constantly cutting your pelvis apart"..."like something is pulling or twisting
your genital organs”... and the list goes on. Nerve pain is not comparable to arthritis,
fibromyalgia or the simple aches and pains felt by the general population. It’s the sort
of pain that would send most people to the emergency room.
What Is Pudendal Neuralgia or Pudendal Entrapment?
A nerve can become trapped in any part of the body. For example: carpel tunnel
syndrome is essentially a trapped nerve in the wrist, but the nerve is easy to access
and untrap because of it's location. Because the pudendal nerve is situated deep in the
pelvis which is dense with connective tissue, ligaments...etc...it is difficult to access
with injections or surgery. And, because the pudendal nerve serves a very sensitive
area of the body: bladder, bowel, genitals...it can be more painful and debilitating
than other nerve pain or entrapments.
Why is it so difficult to diagnose?
The pudendal nerve cannot be viewed by your standard medical tests such as an MRI,
CAT Scan or X-Ray. The nerve originates near the sacrum in the lower back, and
branches out to the bladder, bowel and genital organs. This is the core stabilizing area
of the body, and is therefore densely infiltrated with connective tissue, ligaments,
muscle and fascia. Imagine the nerve as a long piece of spaghetti with tiny branches
buried deep within all this tissue and muscle. Standard medical tests cannot visualize
these tiny nerve fibers. As a result, many sufferers have been misdiagnosed with
lumbar disc problems, chronic prostatitis, vulvodynia, interstitial cystitis,
gynecological problems, and unfortunately some patients are referred to as “head
cases” when their doctors are not able to find the cause of their pain. Also, because of
it’s rarity most physicians are not trained to look for it. Even the standard test for
pudendal nerve function (PNLT) is not a perfectly accurate test. We can only hope
that newly developed diagnostics will be able to show the nerve in detail, and this will
inturn inform a broader spectrum of the medical community of this disorder and result
in a quicker diagnosis.
Why can’t they remove or destroy the nerve?
The pudendal nerve plays a vital role in everyday bodily functions such as urination
and defecation and therefore cannot be cut, destroyed or removed.
How did the pudendal nerve become damaged or entrapped?
No one really knows for sure, but there are numerous causes of nerve damage. Many
sufferers have had previous pelvic surgery, disease or trauma (hysterectomies, hernia,
childbirth, endometriosis, a serious fall..etc) to the pudendal nerve area in which it is
possible the nerve or surrounding structures were damaged. During pudendal surgery,
some patients have been found to have their sacral ligaments crushing the nerve, scar
tissue from prior injury is entrapping the nerve, or even congenital abnormalities in
which the nerve is displaced or attached to the ligaments. It has also been noted that
people who bike a lot tend to suffer from pudendal problems. The forward leaning
position of the body as well as the intense pressure placed on the pudendal area
during biking could predispose a person to pudendal pain and cause scarring and
inflammation.
Why are certain activities so painful for the sufferer?
If the nerve is entrapped or inflamed, certain positions of the body like sitting,
stretching or squatting can stretch or put even more pressure on the already
entrapped nerve, causing even more pain. The main activities that the pudendal nerve
patient should avoid are sitting, biking, lifting, pushing, pulling, squatting, vacuuming,
and stair climbing. It is important to note that the activity may not be painful at the
time. Most sufferers will develop an increase in their pain AFTER these activities and
may feel a serious increase in pain for days or weeks.
What treatments are currently available?
The first step is to avoid ANY activities that increase the pain. It is extremely
important that the patient have a trial period of a few months without unnecessary
sitting, lifting, stair climbing..etc.... before trying more invasive treatments. If
avoiding painful activities does not decrease the pain, pelvic floor physical therapy
can be tried. Anti-inflammatories, muscle relaxants, opiates and some epileptic
medications are of some help, but it is important to understand that nerve pain is very
difficult to treat with pain medications. Pudendal nerve blocks can help with diagnosis
and in some cases reduce pain. Surgery for this condition is in it’s infancy and not
practiced by many surgeons in the U.S, but surgery has shown success in some cases. It
is EXTREMELY important that the patient receive their diagnosis and treatment from a
physician who specializes in pudendal nerve problems, therefore it is not unusual for a
patient to have to travel a considerable distance to receive proper treatment.
Why is my friend or relative so depressed or frustrated?
Please try to imagine the impact of serious chronic nerve pain, and this diagnosis in
particular. Think about the things that are most important to you. What makes life
worth living? Your career? Your love relationships? Your children? Your hobbies? Maybe
you like to travel? Garden? Go to the movies? Hike, ski, or exercise? Every one of these
activities is severely restricted, limited or downright impossible with pudendal
problems. How would you make a living? How would this impact your relationships?
Your quality of life? Your hope for the future? Imagine the impact this drastic change
in your quality of life would have on your mood. Now try to remember the last time
you felt serious pain; a toothache, a broken leg, kidney stone... etc.....We're you
anxious? Depressed? Scared? Couldn't wait for the pain to stop? Imagine feeling that
pain EVERYDAY. Think of what your friend or relative was like BEFORE they had this
pain. I bet they were vital, productive, hard working citizens. Now, through no fault of
their own, their life has been drastically altered. Simple everyday bodily functions are
extremely painful. Everyday chores are too painful or impossible to do and they now
have to depend on others. They wake up everyday with serious pain, and every night
they desperately try to fall asleep with serious pain. Their prognosis is unknown.
There's no end in sight. Most medical treatments for pudendal problems are considered
experimental, of unknown benefit, and could even make their pain worse. Their
friends and family don't understand, and their local medical facility is uninformed.
Sound depressing? It is.
What can I do to help my friend or relative?
Try to understand how you would like to be treated if you were in this situation.
Acknowledge they're in pain. Try not to minimize their predicament. Ask if you can
pick something up at the store, help them with a chore, or if they need assistance
going for medical treatment. Please don't say "at least you don't have cancer". There is
a "c" word worse than cancer....that word is "chronic" …pain…”
Excerpt from the web page below:
http://www.pudendalhelp.com/Emotional_Aspects.html