Taking the Shame out of Pudendal Neuralgia!

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Article Title:

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Taking the Shame out of Pudendal Neuralgia!

Article Description:

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Chronic pelvic pain has affected 15-30 percent of women and men

in the world. Finding a diagnosis and treatment can be quite

challenging. Some women and men with chronic pelvic pain have a

very rare disorder called pudendal neuralgia. Learn about the

diagnosis, treatments and outcomes from this extremely painful

neuralgia.

Additional Article Information:

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1170 Words; formatted to 65 Characters per Line

Distribution Date and Time: 2006-10-26 10:12:00

Written By: Violet s

Copyright: 2006

Contact Email: mailto:violetm12@...

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Taking the Shame out of Pudendal Neuralgia!

Copyright © 2006 Violet s

Society for Pudendal Neuralgia

http://www.spuninfo.org/

What could possibly be worse than struggling with a painful

condition and feeling ashamed to discuss the problem because of

its intimate nature? Such is the case for many suffering with

pudendal neuralgia, a little known disease that affects one of

the most sensitive areas of the body. This area is innervated by

the pudendal nerve, named after the Latin word for shame. Due

to the location of the discomfort combined with inadequate

knowledge, some physicians make reference to the pain as

psychological. But nothing could be further from the truth.

Unfortunately, discussing the condition with gynecologists,

urologists and neurologists often proves fruitless since most

know nothing about the condition and therefore cannot diagnose

it.

Pudendal neuralgia is a chronic and painful condition that occurs

in both men and women, although studies reveal that about

two-thirds of those with the disease are women. The primary

symptom is pain in the genitals or the anal-rectal area and the

immense discomfort is usually worse when sitting. The pain tends

to move around in the pelvic area and can occur on one or both

sides of the body. Sufferers describe the pain as burning,

knife-like or aching, stabbing, pinching, twisting and even

numbness. These symptoms are usually accompanied by urinary

problems, bowel problems and sexual dysfunction. Because the

pudendal nerve is responsible for sexual pleasure and is one of

the primary nerves related to orgasm, sexual activity is

extremely painful, if not impossible for many pudendalites. When

this nerve becomes damaged, irritated, or entrapped, and pudendal

neuralgia sets in, life loses most of its pleasure.

So, where exactly is the pudendal nerve? It lies deep in the

pelvis and follows a path that comes from the sacral area and

later separates into three branches, one going to the anal-rectal

area, one to the perineum, and one to the penis or clitoris.

Since there are slight anatomic variations with each person, a

patient's symptoms can depend on which of the branches are

affected, although often all three branches are involved. The

fact that the pudendal nerve carries sensory, motor, and

autonomic signals adds to the variety of symptoms that can be

exhibited.

Because pudendal neuralgia is uncommon and can be similar to

other diseases, it is often misdiagnosed, leading some to have

inappropriate and unnecessary surgery. Early in the diagnosis

process, it is crucially important to undergo an MRI of the

lumbar-sacral and pelvic regions to determine that no tumors or

cysts are pressing on the nerve. In addition, the patient should

be screened for possible infections or immune diseases, as well

as having an evaluation by a pelvic floor physical therapist to

determine the health of the pelvic floor muscles and to uncover

whether skeletal alignment abnormalities exist. An accurate

patient history is needed to assess whether there has been a

trauma or an injury to the nerve from surgery, childbirth, or

exercise. Tests that offer additional diagnostic clues include

sensory testing, the pudendal nerve motor latency test, and

electromyography. A nerve block that provides several hours of

relief is another tool that helps to determine if the pudendal

nerve is the source of pain.

One of the most common symptoms that accompanies pudendal

neuralgia is severe depression. Some people with the disease have

committed suicide due to the intractable pain. For that reason,

it is important to consider antidepressants, as they can help

lessen the hypersensitivity of the genital area in addition to

relieving bladder problems. Certain anti-seizure drugs

reportedly help to alleviate neuropathic pain while anti-anxiety

drugs provide substantial relief of muscle spasms and assist with

sleeping. Uninformed physicians are reluctant to prescribe

opiates for an illness that shows no visible abnormality, yet the

desperate nature of genital nerve pain requires that opiates be

prescribed for these patients. While medications are not always

satisfactory, they do help take the edge off of the pain for many

people. Until the correct treatment is determined, it is

imperative that patients with pudendal neuralgia receive adequate

pain management since the pain associated with this illness can

be intense.

Treatment depends on the cause of distress to the nerve. When

the cause is not obvious patients are advised to try the least

invasive and least risky therapies initially.

* Physical therapy that includes myofascial release and trigger

point therapy internally through the vagina or rectum assists

with relaxing of the pelvic floor, especially if pelvic floor

dysfunction is the cause of nerve irritation. If no improvement

is found after six to twelve sessions, nerve damage or nerve

entrapment might be considered.

* Botox is now used in medical settings to relax muscles and

shows promise when injected into pelvic floor muscles; though

finding a physician adept at this treatment is difficult.

* Pudendal nerve blocks using a long-acting analgesic and a

steroid can reduce the nerve inflammation and are usually given

in a series of three injections four to six weeks apart.

* If physical therapy, Botox, and nerve injections fail to

provide adequate relief, some patients opt for pudendal nerve

decompression surgery.

There are three published approaches to pudendal nerve

decompression surgery but there is debate among members of the

pudendal nerve entrapment community as to which approach is the

best. Since there are advantages and disadvantages to each

approach, patients face considerable confusion when deciding

which type of surgery to choose. Because there are only a

handful of surgeons in the world who perform these surgeries,

most patients have to travel long distances for help. Moreover,

the recovery period is often painful and takes anywhere from six

months to several years since nerves heal very slowly.

Unfortunately, early statistics indicate that only 60 to 80

percent of surgeries are successful in offering at least a 50

percent improvement.

Patients whose surgeries are not successful or who do not wish to

pursue surgery have the option of trying an intrathecal pain pump

which delivers pain medication locally and helps to avoid some of

the side effects of oral medications. Others pursue the option

of a neurostimulator either to the sacral area or directly to the

pudendal nerves. These are relatively new therapies for pudendal

neuralgia so it is difficult to predict success rates.

Some pudendalites have devised ingenious contraptions for pain

relief ranging from u-shaped cushions cut from garden pads all

the way to balloons filled with water, frozen, and inserted into

the vagina. Most have a favorite cushion for sitting and many

have special computer set-ups for home and office use in order to

avoid sitting. Generally speaking, jeans are a no-no, so

patients revise their wardrobes to include baggy pants and baggy

underwear – if they are able to tolerate wearing underwear.

Clearly more research is required to find effective methods to

better manage the pain and debilitation of pudendal neuralgia.

But in the meantime, friends and family close to those who have

this devastating illness play a huge role in helping patients

cope, thereby maintaining the best quality of life possible.

Support, love and understanding are of primary importance for

those suffering with this affliction.

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Ms. Violet s has a Bachelor’s degree in nursing and has

been an active member of a Pudendal Neuralgia forum for 2-1/2

years. Having suffered with Pudendal Neuralgia, she has seen

a 75% improvement in quality of life since her pudendal nerve decompression

surgery in France two years ago. Married with

two children, Ms. s resides in Southwestern United States. You can

usually find Violet at http://pudendal.info/phpBB2/ , and further information is

available at http://www.spuninfo.org or http://www.tipna.org/forum/index.php