PN Documents

Pudendal Neuropathy Documents

General Overview
PNE Brochure
PN Diagnosis Decision Path
The Cycle of Acceptance

Documents for the Layman
Nante Travel Book
Houston Travel Book
The Comparative Pain Scale
Surgery Report on Greg Thibeaux by Dr. Robert
Bicycle Saddle Neuropathy
Christmas Card 2002
He Lives in Wisdom

Documents for the Laywoman
Newspaper Article on Judy Birch's Operation
Chronic Pelvic Pain: A Patient Education Booklet
Complex Pelvic Pain Syndromes

Technical Medical Articles by the Top Experts
PNE by Prof Robert
Perineal Pain: Physical Therapy Treatment by Dr. Guerineau

Other Technical Medical Articles
Pudendal Neuralgia: CT guided pudendal nerve block technique
PNE Early Symptoms, Operative Techniques, and Results
The Ischial Spine and Pudendal Nerve Entrapment
Anal Pain Caused by Entrapment of Nervus Pudendus

General Overview

These three documents are especially useful:

PNE Brochure - We have taken a decentralized approach to PNE publicity. Anyone who wants to help spread the word about PNE can print up some brochures and distribute them. This is also a good introduction to PNE.

PN Diagnosis Decision Path - Using a decision path diagram, this gives an overview of how PNE is diagnosed. This document is useful for educating and planning with your doctor. The diagram reduces a tangled mass of confusion to a clear, high level path.

The Cycle of Acceptance - This was written expressly for this community and those who are having trouble dealing with accepting their condition. Unless you recognize the Cycle of Acceptance and get to the acceptance step, you are doomed to unnecessary emotional suffering and will be unable to manage your case wisely.

Documents for the Layman

These are for men and women.

Nantes Travel Book - This is a detailed 12 page description of the entire experience of going to Nantes, France for final diagnosis and surgery. The patient was in the December 2002 surgery group. The document references these 36 images. Here's a typical passage.

"Professor Robert is located on the 3rd floor - Chief of Neurology. He will probably not see you after surgery until the next day. All of this depends on his caseload and schedule. On the first surgery day for the December 2002 group he taught class and performed 6 PNE surgeries. For the December 02 group, all doctor visits were at least the next day. Doctor rounds must be an U.S. thing, we never saw any Doctor doing rounds. Dr Robert is a Christian and explained that he just does a simple procedure and only God can explain why it happened and for sure, if a complete recovery is possible. He also has a sense of humor and told us a Texas joke after listening to our accents. We never understood the joke."

Houston Travel Book - A shorter description of a single patient's diagnosis and surgery in Houston. It contains the interesting passage:

"Recently, the Houston team has incorporated an additional means of monitoring the patients’ progress throughout the surgical procedure and this necessitates that you be 'wired up' from head to toe. Not to worry, this isn’t uncomfortable and the part that is, when they hook up your genitals, is reserved for after you’re unconscious (bless their hearts!!!). It greatly increases the information about the status of your electro-conductivity, and allows the doctors to determine if they’ve located all areas of pathology, or if they need to continue with further exploration."

A question about this on the forum brought these replies on 10/7/03:

"The nerve monitoring was discontinued just prior to my son's surgery on August 25th. As I understand it, the nerve monitoring was used to help guide the surgery and to provide information for Dr. Ansell during the procedure. Electrodes were placed in various places and Dr. Popeney monitored the data remotely from his office. He communicated the information to Dr. Ansell during the procedure. However, Dr. Ansell felt that he is now quite skilled at the procedure and did not feel that the monitoring was still necessary. - LesM"

"I had surgery [on August 18, 2003 with Dr. Ansell in Houston]. They did not use the monitoring on me. Expensive and not real helpful were the reasons given to me. - RyanB"

The Comparative Pain Scale - This is a discussion of pain scales and presentation of one to use. This allows us to more reliably compare our levels of pain. It also allows you to read the PN Case Database records and know what someone else means by their level of pain.

Surgery Report on Greg Thibeaux by Dr. Robert - This document will give you and your doctor an excellent initial glimpse into a single surgery and PNE. As Greg says:

"Hello, my name is Greg Thibeaux and I was a surgical patient of Dr. Roger Robert's in December, 2001. I had my pain, mostly in the perineum/rectal area, for 4 1/2 years before seeing Dr. Robert. I was diagnosed as having PN by Sheldon Jordan, a neurologist in Santa Monica, CA. I went to Nantes, France with 3 other patients who also had PN. All four of us had bilateral surgery on December 18, 2001. The following is Dr. Robert's post-surgery report that his secretary emailed to me approximately 3 months after my surgery."

Bicycle Saddle Neuropathy - An online article about how cycling causes pudendal and other forms of neuropathy. Note the frequency of symptoms:

"Andersen and Bovim surveyed 260 cyclists participating in a 540-km long distance bike tour. Of responding males, 22% (35 of 160) reported symptoms of either numbness or pain in the pudendal area. Thirty-three males reported penile numbness, with 10 male cyclists reporting symptoms that lasted longer than 1 week. Twenty-one (13%) males reported symptoms of impotence, 11 of which had symptoms longer than 1 week, and 3 men reported impotence lasting longer than 1 month.

"Kuland and Brubaker reported that during the 1976 Bikecentennial tour, there was a 7% incidence of pudendal and/or penile numbness, but this study only surveyed 89 out of 1200 participating cyclists.

"Weiss studied symptoms of cyclists participating in a 500-mile bicycle tour, where 45% of the cyclists reported at least mild and transient perineal numbness. Ten percent reported the symptoms as severe, and 2% of the cyclists had to temporarily stop riding. Perineal numbness also has been documented in women cyclists. LaSalle surveyed 282 female members of a Dallas cycling club. In this group, 34% of the women reported perineal numbness."

Please realize that heavy cycling can be highly addictive. Many are unable to stop once severe pain starts. They rationalize that "it will go away," "I must keep in shape," and so on, but the real reason they continue is addiction. Many of the worst cases of PNE are from heavy cycling. Please don't fall into this pattern yourself.

Christmas Card 2002 - Try this for a dose of humor. Written especially for PN sufferers everywhere.

He Lives In Wisdom - Try this for a dose of seriousness. This is an inspirational statement of philosophy for those who may be facing times of trouble, as a result of pain, no diagnosis, worry about surgery, treatment failure, loss of ability to carry on a normal life style, and so on, just as I was.

Documents for the Laywoman

These are for women, although there is much information that applies to men also. About 2/3 of all PNE patients are women.

Newspaper Article on Judy Birch's Operation - This January 13, 2003 article is a fine example of how PNE patients can spread the world about PNE and it's relationship to endometriosis. Our hats are off to Judy for all the fine work she has done to help so many people.

Chronic Pelvic Pain: A Patient Education Booklet - From the above site. This is a real jewel of a very readable article, with some highly interesting information:

"Although acute pain may indicate specific active injury to some part of the body, chronic pain is very different. Often in chronic pelvic pain, the initial physical problem has lessened or even disappeared, but the pain continues because of changes in the nervous system, muscles, or other tissues. This teaches us an important distinction:

"In acute pain, the pain is often a symptom of underlying tissue damage. In chronic pain, the pain itself has become the disease!

"As this long-term, unrelenting pain process continues, even the strongest person’s defenses may break down. This can result in associated emotional and behavioral changes. This symptom complex is termed Chronic Pelvic Pain Syndrome.

"There are six features common to all patients with chronic pelvic pain syndrome:
1) The pain has been present for six months or more;
2) Conventional treatments have yielded little relief;
3) The degree of pain perceived seems out of proportion to the degree of tissue damage detected by conventional means;
4) Physical appearance of depression is present (e.g., sleep disturbance, constipation, diminished appetite, “slow motion” body movements and reactions);
5) Physical activity has become increasingly limited;
6) Emotional roles in the family are altered; the patient is displaced from her accustomed role (e.g., wife, mother, employee)."

Complex Pelvic Pain Syndromes - By Dr. Charles W. Butrick, Director, The Urogynecology Center Overland Park, Kansas, September 2001. This somewhat gives an overview of classic pelvic pain syndromes. It discusses functional bowel disease, myfascial pain, pelvic floor tension myalgia, vulvodynia and its subtypes, and interstitial cystitis. Of interest is the emphasis on "neuropathic activation that occurs in the sacral cords of our patients with any form of prolonged pelvic pain disorder" and the frequency of coexisting syndromes.

Submitted by Peggy Pegg, who found it on the International Pelvic Pain Society site. Click on Resources for this document and others. This site is oriented towards women but has much to offer anyone.

Technical Medical Articles by the Top Experts

By top experts we mean the best in the world. The doctors in Nantes, France are the ones who starting in 1987 invented and perfected the standard PNE diagnostic and treatment protocol.

PNE by Professor Robert - This is the definitive article on PNE. Prof Robert and others pioneered the successful diagnosis and treatment protocol for PNE. This article was first published in French in 1997. It announced to the world that sufferers from this previously nearly impossible to cure condition now had an excellent chance of being cured, with statistics on 150 surgeries to back up that claim. As the article points out, favorable outcome percentages should improve with earlier diagnosis, which is exactly what will happen as websites like this one help to spread the word to the medical world. A few years from now, this website will probably no longer be needed.

The actual title of this article is "Anatomic bases of medical, radiological and surgical techniques. Anatomic basis of chronic perineal pain: role of the pudendal nerve." This is so long that we refer to it with the shorter title of PNE by Prof Robert. Also there are multiple authors (R. Robert1, 3, D. Prat-Pradal2, J.J. Labat3, M. Bensignor3, S. Raoul1, R. Rebai3 and J. Leborgne1 with the technical assistance of M.C. Lardoux and J. Thiodet) but Prof Robert is the principle author. He prefers the title Professor Robert, but we early on made the mistake of calling him Dr. Robert on some pages. Our apologies.

Perineal Pain: Physical Therapy Treatment by Dr. Guerineau - This is probably the definitive article on non-invasive treatment of perineal pain. This 2002 article describes physical therapy treatment to the six muscle "points" causing pain that "reeducation" can effectively treat by ending the spasm (chronic muscle cramping) that causes the pain. The muscle points are the piriformis, the internal obturator, the rectur femoris, the psoas, the levator ani, and the deep transverse perineal.

I had several treatments from Dr. Guerieneau in the Fall of 2002. He's a kindly gentleman who takes great care in his interview, exam, and treatments. My treatments consisted of two techniques: several chiropractic like manuevers and muscle "stretch and relaxation." The latter consists of carefully putting the body in a position that stretches the muscle of interest, holding that position for a certain count, and then slowly releasing the tension on the muscle. I got the impression that the slow release and the relaxation techniques being used were designed to get my muscles to relax after years of being in knots. It didn't help me, but many have reported it helped them.

One should be cautious about concluding that those with PNE like symptoms will encounter the high success rates quoted at the end of the article, because the patient inclusion criteria for the study is not apparent. As the article title suggests, the patients probably had general perineal pain symptoms.