PNE Introductory
Frequently Asked Questions

Maintained by Jack Harich - Last updated October 1, 2003

The following is my personal opinion based on study of the available literature, forum messages, personal experience, and speculation. I'm not a doctor. For a fuller and more reliable description of PNE, see the literature and your doctor. The introductory questions, along with some friendly advice, are:

1. What is Pudendal Nerve Entrapment?
2. What causes PNE?
3. What is PNE frequently misdiagnosed as?
4. How is PNE correctly diagnosed?
5. What should I do if I have PNE symptoms?

6. Who are the experts?
7. How can I educate my doctor?
8. What should I do first? Stop making the problem worse.
9. What should I do second? Accept your condition.
10. What should I do third? Develop a diagnostic plan.

11. What is a nerve block? - Special update on steroids
12. What is the Pudendal Nerve Latency Test (PNLT)?
13. Where is the pudendal nerve and what does it look like?
14. Why does it take so long to feel better after surgery?
15. How can I learn more about PNE?

1. What is Pudendal Nerve Entrapment?

Pudendal Nerve Entrapment (PNE) is a condition causing pain for no apparent reason in the lower central pelvic areas. These are the anal region, perineum, and scrotum and penis or vulva. Pain is worse upon sitting, and less when standing or sitting on a donut cushion or toilet seat. These are the classic PNE symptoms. But there is no one particular pattern that dominates. Pain can be in just one area, several, or all. It can be unilateral or bilateral. In some cases standing will relieve the pain but lying down will not.

Some of the words PNE sufferers have used to describe their pain are stinging, burning, stabbing, aching, knife-like, irritation, cramping, spasm, tightness, crawling on the skin, twisting, pins and needles, numbness, and hyper sensitivity. As Prof Roberts writes, "The character of the pain consists of sensations of burning, torsion or heaviness, and also of foreign bodies in the rectum or vagina. The pain is piercing and very comparable to a toothache." The pain may feel shallow or deep. It often starts in one place and progresses.

Frequently there is also urinary, anal, or sexual dysfunctionality. The pain is usually bilateral - the same on both sides. There are many other pain areas associated with PNE, such as internal organs or pain radiating down the leg. However, if pain is not present in the "classic" areas, the condition is less likely to be PNE. It may be another nerve, such as the cutaneous, or it may not be nerve damage related at all.

As Professor Robert writes:

"The main daily activities requiring the seated position (work, meals, driving, theaters, etc) are no longer available to these patients, whose mental attitude is one of chronic pain sufferers so obsessed with their miserable state as to be rapidly regarded by their doctors as psychiatric cases."

The pain is sometimes so intense that suicide is considered. But since a change of day to day habits can alleviate the pain some or a lot, people make those changes and learn to tolerate the pain that remains. Some cases have gone on for 20 years. Many seem to be in the 5 to 10 year range, apparently because that's how long it takes on the average to stumble onto a doctor that can correctly diagnose PNE.

Strictly speaking, PNE is a subset of Pudendal Neuropathy (PN). Neuropathy is nerve disease or damage. PNE involves entrapment, while PN involves entrapment, disease, or damage of any kind. In your initial diagnostic stages it's more useful to think PN. As tests become definite and point to entrapment, it is time to think PNE. The definitive article is PNE by Prof Robert and others in Nantes, France. Prof Robert prefers the term PNE due to "considering so-called idiopathic perineal pain as an entrapment syndrome." (Idiopathic means unknown cause.)

2. What causes PNE?

PNE is caused by entrapment of the pudendal nerve at any of various places on the nerve. Nerve entrapment occurs when a nerve is constricted for some reason and responds by inflammation, scarring, or thickening. All these cause nerve diameter to increase and the nerve to misbehave.

The initial constriction is caused by pressure or trauma of some type or an unknown reason. If this occurs where a natural constriction is also present, such as where the nerve passes over a bone or through a tunnel, then once the nerve increases in size a vicious cycle can begin. As the nerve swells it encounters a natural constraint. This increases prolonged pressure on the nerve, which causes more swelling, which causes more pressure, and so on. This vicious cycle explains why the pain can go from a low to a high level so fast, and why once a case becomes chronic, very little sitting, no sitting at all, or the least bit of movement can elicit pain.

Entrapment is a bit of a catch all term. Stretching or rubbing of the pudendal nerve can also cause PNE. In all cases the result is nerve irritation, which causes improper functioning of the nerve. An entrapped nerve misreports pain and causes organ dysfunctionality such as urinary, defecation, and sexual problems.

Now, what causes entrapment? PNE is usually precipitated by prolonged sitting or trauma to the sitting area, combined with a genetic and developmental susceptibility. Each person's body is unique. Tissue mass varies. Nerve routes vary. The amount of pressure a nerve can take before responding with inflammation varies. And so on. Putting all this together explains why some people can sit for 10 hours a day for 30 years and not get PNE, while someone else may sit 6 hours a day for 5 years and get it. However, some cases of PNE involve no prolonged sitting or trauma. Life has its mysteries....

PNE is common in high mileage bicyclists who do not stop cycling when the pain starts. It's so common in this group it's nicknamed Cyclist's Syndrome. The prolonged sitting pressure, the continual nerve rubbing and stretching from pedal pumping, and the extremely high seat pressure on the ischial spine and perineum all combine to form the ideal conditions for PNE. Similarly susceptible groups are those using rowing machines or doing lots of situps. The human body was simply not designed for these behaviors.

3. What is PNE frequently misdiagnosed as?

Chris R., a PNE sufferer and medical student at the Medical College of Georgia, US, and now a doctor, had this to say in 2002:

"Many PNE patients are originally diagnosed with one or multiple vague pelvic pain disorders before getting the correct diagnosis. The most common diagnoses are: prostatodynia, nonbacterial prostatitis, idiopathic vulvodynia (idiopathic means unknown cause), idiopathic orchialgia, idiopathic proctalgia, idiopathic penile pain, Levator ani syndrome, and coccydynia.

"The reason for these many diagnoses is that the pudendal nerves innervate urogenital and anorectal tissues, cutaneous (skin) tissue, and many small but very important muscles in the perineum. The muscles include: the external anal sphincter, puborectalis portion of the levator ani muscle, superficial and deep transverse perineus muscles, ischicavernosus, bulbospongiosus, and the external urethral sphincter.

"Irritation of the pudendal nerves can cause muscle spasms in one or more of the aforementioned muscles. Spasm of the external anal sphincter can cause constipation (anismus). Similarly, spasm of the external urethral sphincter can cause urinary hesitancy, mimicking prostatic problems. Spasm of any of the other muscles can cause discomfort and a feeling of tightness, cramping, etc." (Source - Email suggestion to improve this FAQ.)

I once spent over 90 minutes with a doctor who, on the basis of questions, an examination, and minor tests (a blood test and X ray) concluded that since there was no physical reason for my pain, it must be psychosomatic. We actually spent 30 minutes discussing why this must be so and how to pursue a psychological cure. I was convinced my next visit would be to a shrink. But soon afterwards, when reflecting on how real and how bad the pain was, I decided this doctor, a rheumatologist, was a quack.

4. How is PNE correctly diagnosed?

Correct diagnosis follows these main stages:
1. Presence of the classic PNE symptoms.
2. Elimination of other factors like disease and injury.
3. Response to nerve blocks and the PNLT.

Note that Prof Robert's article says "The anatomic study we performed led us to regard the distal motor latency of the pudendal nerve as the examination of choice."

5. What should I do if I have PNE symptoms?

PNE is so rare and understanding of it is so recent that in most cases it goes misdiagnosed or undiagnosed for years. As one article says:

"Most patients felt hopelessly isolated as the world's only victim of a malady without a name. Patients wondered whether their imagination was the source, but they knew it was not. They report that acquiring a name for their affliction and contacting other sufferers gave important help even while symptoms persisted." - Source: - PNE: Early Symptoms, Operative Techniques and Results.

As another writes in an email on Dec 16, 2001:

"My husband, Tom, has had pain over 9 years and we have been everywhere in Minnesota looking for help. You name it, we have probably tried it. We have been going to Mayo 2 or 3 times a year since 1993. . . To make a long story short, they started running more tests that day and on Friday of that week we met Dr. Antolak. He was the one who finally made the diagnosis of PN entrapment. He told us he could help Tom..." - Source: Messages on the old Yahoo site.

Do not postpone diagnosis and treatment. The longer the delay, the worse the pain tends to become. The longer and worse the pudendal nerve has been irritated, the less likely steroid injections are to be the cure, the more likely surgery will be needed, and the less likely surgery will be a complete success. This is because nerve damage, once it goes past a certain point, becomes irreversible. As one article says:

"Delay in diagnosis and treatment was the rule. Patients came to my attention an average of 7.3 years after onset (Range 0.5 to 20). Patients consulted urologists, gynecologists, neurologists, surgeons and internists on multiple occasions and reported little relief from treatments directed toward the anus, the bladder, the prostate and toward perineal muscle spasms. I record earliest symptoms because delay is considered a source of treatment failure." - Source: PNE: Early Symptoms, Operative Techniques and Results.

If you have PNE symptoms, you are in a tricky situation. There are so few experts in the world that you have only two basic choices: go see the experts or educate your doctor.

6. Who are the experts?

The overwhelming consensus among those who have been treated for PNE is that Prof Roger Robert of Nantes, France is the world's leading expert on PNE. He and the team he works with have pioneered a particular approach to diagnosis, non-surgical treatment, and surgical treatment that has the best average outcomes of any protocol. He has operated on over 500 patients as of mid 2003. In his 1997 article he states:

"We have performed 150 freeings of the pudendal n., either uni- or bilaterally. The patients were predominantly female (two-thirds of the cases). Our follow-up exceeds 10 years. The results are promising since in a patient group considered as chronic and beyond all possible treatment, we recorded after the failure of repeated infiltrations 45% who considered themselves cured, 22% improved, and 33% who derived no benefit from the surgery but who suffered no exacerbation.

"Treatment by X-ray or scanner guided infiltrations cured 65-70% of the patients. Operation was reserved for those in whom repeated nerve blocks failed. We have to report only two complications, common to all surgery: a hematoma and an abscess, which both had to be surgically evacuated." - Source: PNE by Dr. Robert (See the Results section on page 8.)

Note that about 2/3 of patients are cured without surgery. Of those who had surgery, none got worse. Dr. Robert recommends that you work closely with other doctors first before seeing him. As he put it in a widely quoted email to a patient:

"Effectively, all of the patients suffering from a pudendal nerve entrapment must have blocks before coming to France for two reasons. First of all, blocks constitute a therapeutic way for treatment of this disorder. In our experience in fact, about 2/3 of the patients are definitively free of pain after one or two blocks made at the levels of a potential entrapment i. e. at the ischiatic spine and at the alcock tunnel if the first block is not sufficient. Most of the time in fact the compression of the nerve trunk is at the level of the claw between the sacro spinal and the sacro tuberal ligaments. That is why I don't like to call this syndrome the Alcock syndrome, as far as mainly the compression is more important outside of the canal. Of course the Alcock tunnel syndrome does exist That is why, according to the medical findings we start by blocks at the level of the claw. If it doesn't work then we do the second block in the tunnel. The block at the level of the claw is done under fluoroscopy. The other one is scan guided under CT view. Two blocks can be done at each level on one or both sides but no more. Usually the first blocks are made in the US and we do the others during our consultations.

"The second reason is that blocks constitute a very important diagnostic test. If they don't work at all we can suspect a bad diagnosis. If they do well for a while (several days or weeks) they must be done another time and for you in US. The surgical indications arise from the failure of those blocks with time. It concerns only one third of all the patients. To my knowledge the best place to have these blocks in the US is the MAYO CLINIC as we met several times in France with DR S ANTOLAK who knows quite well how to manage with this pathology. The main problem arises for patients without any effect after blocks. I do believe that then they are not candidates for surgery. A block which may lead to disparition of pain during some hours is nevertheless a good diagnostic test for us and may lead to surgery. So, the guideline could be as follow: Blocks at the two levels without any efficacy = bad diagnosis. Blocks at one or two levels with "long improvement" (some days or weeks ) = try one block again at the two levels. If it doesn't work = surgery with very high hopes. Blocks with very short amelioration = surgery. That is why we usually do another block during our consultation to guess the short efficacy, at least, of a well done block. I hope that you will understand my explanation in a very simple (I can't do better ! ) English.

"Sincerely yours. R ROBERT"

In the United States, Dr. Ken Renney of Houston, Texas is emerging as a leading US expert. Ken has the unusual qualification of having been a PNE sufferer himself. He has seen first hand what the pain is like and the "run-around" that patients get from the medical system when they have PNE symptoms. In 2000 Ken was operated on by Dr. Robert and is now recovered. He is fully knowledgeable on PNE. In May of 2002 Ken and two other doctors visited Nantes and studied with Dr. Robert for a week, including assisting on six surgeries. Ken is the coordinator for the Houston doctors working on PNE.

As PNE becomes more widely known in the medical profession, we can expect to see more experts emerge. See the List of Doctors.

Please see an expert to avoid experiences like this one, from the Pudendal Neuropathy website's Yahoo posts.

"Date: April 13, 2002. Please be careful, as colon & rectal specialists ARE SURGEONS. As another group member already stated, doctors are going to treat you in the area they are trained. After many other types of doctors, I went to one approximately 2 yrs. after my pain started, and he recommended a partial lateral sphincterotomy. This is literally cutting the sphincter muscle - in my case just one side because the great majority of my pain is on the left side. He told me he didn't know about the vaginal pain but 95-98% "guaranteed" me I would no longer have rectal pain or burning. I can't tell you how much worse this has made me and how much more difficult bowel movements have become! However, I am lucky not to have fecal incontinence! Ellen."

Or this one, posted by Joan Barron, on June 28, 2002, message #1844. Joan had PNE surgery in May of 2002. She wrote:

"The injections at Mayo provided me with minimal relief. Bensignor gave me an injection......almost complete relief." (Note that Bensignor has much more expertise than even the very fine doctors at Mayo.)

Joan has read the above paragraph, and replied: "PS - You are correct about Bensignor and his expertise."

Or this one, posted by HD on July 3, 2002:

"Although I am only one data point, my vaginal injection with Dr. Weiss was the turning point of the worsening of my symptoms while my nerve block (done through butt) with Dr. Jordan has really improved my symptoms. Since my vaginal injection from Dr. Weiss, I have been advised by many neurologists to “never do that again!”. In other words, don’t let a non-neurologically trained person do nerve injections on you – they don’t know what they’re doing and the potential for damage is great. In my view, one of my worst treatment mistakes was not to research this point thoroughly and to take the injection from Dr. Weiss based on his advice alone."

As Greg Thibeaux explained to another sufferer:

"Date: April 12, 2002. Joan, the doctor that you're going to see for levator ani will most probably not diagnose you with PNE, even if you bring him information about it. Generally, doctors want to find what you've got only if it relates to what they can do for you. Since PNE is so unheard of, most doctors will probably quickly dismiss that idea. I don't mean to discourage you, but like I said earlier, there are very few doctors who can make an accurate diagnosis for PNE."

7. How can I educate my doctor?

Show them the following documents in approximately this order:

1. This document.

2. PNE by Prof Robert, 1997. This is the definitive article on PNE.

3. Pudendal neuralgia: CT-guided pudendal nerve block technique, 1999. A capable specialist can use this to do an ischial spines nerve block on you, which is just what Dr. Murphy did on Dr. Ken Renney long ago. As Ken put it, "He learned on me."

4. Print the male or female pudendal nerve image (see discussion below) and use it to discuss details of your pain with your doctor. Try to think and talk in terms of how nerve damage of some sort could be causing pain in specific nerve areas. Looking at the image, discuss how to diagnose your problem with specific tests at various places on the nerve. Also discuss how there are only four main ways to cure your pain if it's PNE: pressure reduction (such as not sitting or sitting with special cushions), muscle reeducation, injections, and surgery. Use the image and documents to form a mental model of your case.

5. Then suggest they study the many documents, images, and material online at this site and others, unless they have a better source.

6. However, it's probably best that you go see an established expert. But these documents and this site can give your doctor a general overview of PNE. This can lead to avoidance of unnecessary treatment, avoidance of delay, and to the correct referral. Those three things should be your goal.

As an example, I have pain that is only close to the classic PNE pattern. My sitting pain is on the ischial tuberosities and between them. When standing I have pain between them but forward slightly. The first goes away when pressure on the ischials stops. The second goes away when I stop standing or walk at over about one mile per hour. There are no other problems. This has been going on since early 1998. It started after 6 years of lots of office sitting. In the 1970s I used to bicycle and motorcycle a lot. They were my main form of transportation for 5 or 10 years, including many 500 mile motorcycle trips and a 350 mile bicycle trip with backback and guitar. I minimize sitting time by lying down a lot and use a variety of special cushions when I have to sit. I also use a kneeling chair. To keep in shape from so much lying down and still further reduce my sitting time, I walk an average of 3 hours a day. For further details see my website on False Ischial Bursitis, which I now strongly suspect is a form of PNE or cutaneous nerve entrapment.

As an example, I'm constantly saying to myself, "It could be worse". This helps me to accept that my condition may never improve, and that if it doesn't I have a lot to be thankful for anyhow. I have many friends with worse medical problems, some of whom have died. Until I accepted my condition I was so full of anger at doctors that I was unable to manage them or talk to them effectively. I was in one big emotional knot, barely moving forward with a rational plan.

While it's true that the US medical system is full of doctors whose only goal is to get you out of the door in 15 minutes so they can see 2000 or so patients a year, it's also true that no system is perfect, the one we have is much better than the one we had 100 years ago, and there are a few good doctors who care. The reason so many doctors are in a rush and assume they know all there is to know in their speciality is because the cost management side of the health care industry causes them to behave that way. The system is faulty, not the doctors.

The idea is to not blame others, which is scapegoating. Instead, don't blame anyone. Rise above that low level of thinking and see the situation for what it is.

As an example, here's the plan Dr. Ken Renney worked out for me on March 18, 2002. It consists of a number of areas to test. The results will eliminate some areas. What's left will determine the next stage plan. He gave me a list of 8 items which I've organized into the plan we discussed. Their organization illustrates the strategy of a good diagnostic plan.

1. Is the source of the pain the pudendal or the posterior femoral cutaneous nerve?

2. Do a CT block on the pudendal nerves at the ischial spine. Correlate areas with numbness.

3. Do a pudendal nerve motor latency test. (PNMLT)

4. Try a nerve block on the posterior femoral cutaneous nerve. (Since my pain is in the ischial area.)

The following are general. 5, 6, and 7 are explorations. We may find something or we may be able to rule out a few things.

5. Do an MRI of the lower spine, pelvis, and sacrum.

6. Have a urologist do a PSA and a digital rectal exam.

7. Do a stool examination for possible blood. (Screens for colorectal cancer and other problems.)

8. Try Elavil (Amitriptyline) 30mg at night. (Since not sleeping well due to low level pain.)

The collection of all these tests is called a workup. An incomplete workup causes false assumptions, which can all too easily cause a false diagnosis, a guess, no diagnosis at all, or a wrong next stage plan. An excessive workup causes confusion, delay, and unnecessary expense. Only an expert can determine what a patient needs for a complete and non-excessive workup.

Ken had a Houston radiologist, Dr. James Murphy, do item 2, the CT block on the pudendal nerve at the ischial spine. This is one of the first diagnostic tests for PNE. Results were that all pain went away for about 2 or 3 hours and then returned, although the residual sitting pain seemed less the first night. This is a strong sign we're on the right track.

Since I live in Atlanta, I'm now working with my doctors there to proceed with the rest of the plan. Of the remaining items, numbers 3 and 4 are expected to be the most informative. Not many doctors can do 2, 3, or 4 or do them well, so I may need to return to Houston to have them done. It is important to work with experts. (Note - I've since pursued further diagnosis in Nante and am close to PNE surgery.)

Remember that most tests turn out normal and so serve only to rule out an area. Diagnosis proceeds just as a detective works: proof by elimination and revelation of cause and effect. Thus in a difficult case many, many tests are necessary.

Sherlock Holmes explained all this, the fine art of investigation, quite well in Sign of the Four, published in 1890. This is the source of one of his most famous quotes. (Now for some fun. Forget all your troubles for a moment. Italics have been added to highlight the quote. The all caps are in the original.)

"How came he, then?" I reiterated. "The door is locked, the window is inaccessible. Was it through the chimney?"

The grate is much too small," he answered. "I had already considered that possibility."

"How then?" I persisted.

"You will not apply my precept," he said, shaking his head. "How often have I said to you that when you have eliminated the impossible whatever remains, HOWEVER IMPROBABLE, must be the truth? We know that he did not come through the door, the window, or the chimney. We also know that he could not have been concealed in the room, as there is no concealment possible. Whence, then, did he come?"

"He came through the hole in the roof," I cried.

"Of course he did. He must have done so. If you will have the kindness to hold the lamp for me, we shall now extend our researches to the room above, the secret room in which the treasure was found."

The key to diagnosis is if you value your health, GO SEE THE EXPERTS RIGHT NOW. Don't be pennywise and pound foolish. :-)

Question - "For the people who are cured through shots alone, are they cured immediately or does it come gradually? Are a series of blocks done?"

Answer - "There is generally an immediate but short (a few hours) effect of local anaesthetics. In good cases, the relief from steroids takes 2 to 4 weeks, sometimes after a transcient worsening of the pain for a few days. Long term relief usually requires 2 or 3 injections. When a long term (several months) relief is obtained from these injections, a recurrence of the pain may happen but is exceptionnal (less than 10%)."

"We have only cured ONE person [with nerve blocks] since we started and I have seen about 150 patients. Not great stats but it's the truth."

"Treatment by X-ray or scanner guided infiltrations cured 65-70% of the patients. Operation was reserved for those in whom repeated nerve blocks failed."

"Pudendal nerve latency is the measurement of the time from stimulation of the pudendal nerve at the ischial spine to the response of the external anal sphincter. Normal pudendal nerve terminal motor latency is <2.2 ms." - Source

"There are several reasons the nerve takes so long to get rid of the painful sensations:

"1. It takes a while to decrease the inflammation from the surgery.

"2. The damaged nerve has A LOT more receptors than a normal nerve making it A LOT more sensitive meaning it will conduct an impulse at a lower threshold. (hyperalgesia/allodynia) It takes a long time for these receptors to be down regulated. Taking 25mg of Elavil before going to bed every night is thought to block some receptors and speed up the process. I think it helps quite a bit. It can cause some constipation, though, so use some citrucel, etc if you use Elavil.

"3. The pain has been there a long time and the pathway is 'grooved' --- it is called central nervous system plasticity. This is also thought to be helped some by low doses of Elavil. But most importantly, it takes A LOT of time." - (Source: Email to me from Kevin Harwood with material from Chris R.)