Pudendal Nerve Surgery (PNE aka Pudendal Neuralgia)

[webslave]

Regarding the surgical procedure on the pudendal nerve, which has gained some notoriety on the Internet: most people who have had it are negative about it (as can be seen at various PNE forums on the 'net). Ligaments are cut, the spine can be destabilized, and there is a 6 inch scar on each buttock. People who have had it are often on morphine pain medication afterwards, indefinitely.

My opinion: Stay as far away from it as possible.

Unfortunately several internet forums have started up to promote this surgery, so that naive people are made to think it's mainstream medicine with lots of support. In fact there are only a small number of surgeons profiting from this treatment, and most neurologists think it is a load of bollocks, to be frank.

[webslave]

It really worries me that people are paying $20-40K for this surgery to the delicate musculature of the pelvic floor, when most surgeons describe this operation as (and I quote an expert here, who shall remain nameless):

"routinely unsuccessful"

I caution all those considering this surgery to wake up and smell the coffee. Have an in-depth talk to at least 4 people who claim the operation was successful. Ask them what pain medications they are still taking, exactly what symptoms they still have. Most are still on pain meds but because they have paid a lot for the treatment, will tell you that it was "successful".

Caveat emptor.

[webslave]

Stanley Antolak is the main proponent of this surgery in the USA. He made the comment that 95% of men with pelvic pain have PNE (and not nonbacterial chronic prostatitis). I ran this past a top uro in the male chronic pelvic pain field, and his comment was "Total crap. Let him show some scientific results. Let someone else confirm his findings."

I think you all should know this. Don't shoot me, I'm just the messenger. Simple fact: Stanley Antolak's PNE surgery is not in the mainstream, and nor are his treatments. The science is weak. You may find that attractive, or you may find it alarming. I'm in the latter camp.

[Ddream]

Webslave,

The work of Dr. Antolak is based on the research of Dr. Roger Robert and his team in Nantes, France. Robert pioneered the pudendal decompression surgery and Antolak learned from Robert.

Are any of the uros that you know familiar with the research of Robert and if so, what is their opinion? It is my understanding that the majority of the doctors in the United States do not know about PNE or that a pudendal decompression surgery even exists.

What is frightening about the pudendal forum is that people are urged to have surgery as soon as possible or else their nerve will be permanently damaged. I don't know what the facts are about that.

[webslave]

I also find that forum's rush to surgery very disturbing. They don't want you to think about it too much, do they.

I have no doubt there are people with PNE problems, but they are rare (impact injuries, congenital malformation, adherent scar tissue post surgery), as the few genuine studies I've seen on this topic state.

[webslave]

Here is a typical statement from the wife of a man who had the PNE surgery 6 months ago:

John's PNE pain still feels worse than before surgery. The level of PNE pain seems to have plateaued. Like last month, it probably averages about a 3 to 4. However, he feels there may have been fewer flare-ups and less intense ones. He continues to have a number of difficulties with his legs which did not exist prior to surgery. These include: pain, numbness, tingling, weakness and just abnormal sensations. We assume nerves that go from the spine, through the pelvis and to the legs, were irritated during surgery. These symptoms have somewhat improved over last month, but continue to be a concern.

John still is not able to sit, and because of this, is limited to the house except for a couple of walks outside a day. It is still very difficult for John to bend over. He can't lay on his back or he will get pain in his rectum.

The thought that someone with CPPS/pelvic myoneuropathy could be convinced (by the 4 or 5 surgeons in the world who think this surgery is a good idea) to have this operation is outrageous. Unless there are clear indications for such surgery (see the page on Pudendal Nerve Entrapment surgery at our website), keep away from it.

[Richard S]

Just to clarify, the above quoted patient is now 4 months post-op, and is in no way qualified to be a poster boy for PNE surgical success.

In general with PNE surgery, an increase in pain is typical due to the transposition of the nerve. Most improvement is seen in the 3-12 months post-op, with further improvements 1-5 yrs post op.

Mark, I have no problem with your message that PNE surgery is not for everybody.

[webslave]

I read that he was 6 months post surgery. In any event, patients who do improve post-PNE surgery obtain the improvement mostly within 4 weeks, says this study — which makes perfect sense, because an untrapped nerve should improve straight away.

I have it on good faith from Dr Wise, and other surgeons he knows, that this surgery can be devastating for people. With something like a 40-50% success rate at best, and many patients living indefinitely on morphine thereafter, it is hard to exaggerate how bad the outcomes can be.

I remain staunchly anti-surgery (of any kind) for the vast majority of chronic pelvic pain patients, unless nothing at all helps them and they show the clearest signs of PNE (pain immediately on sitting, otherwise absent, episodes of penile numbness and impotence, etc). It is very worrying to see all the patients who do not fit into this category posting on the pudendal groups.

[MastCells]

It seems that a small group of French doctors popularized PNE surgery for CPP patients. Two American doctors traveled to France to learn how to perform the surgery, and now they are both back in the US making a bundle off of chronic prostatitis / chronic pelvic pain syndrome patients.

Of course, all of their patients with whom I have spoken still suffer from pain months to years after the surgery. I think this is as bad as if not worse than the infection scams. PNE surgery appeals to people, because surgery seems like a quick fix, a final solution, just as curing a bacterial infection is. I wonder what percentage of people who have this surgery actually did suffer from PNE. I bet it's a pretty low number.

[webslave]

Update: I received this email from a reader:

I understand that you spent some time in one or more of the pudendal forums, raising questions about whether PNE might exist, or whether PNE decompression surgery is ever advisable.

I have been doing a similar thing -- and they're threatening to ban me. I'm not trying to be difficult, but when I find out things, such as that the European Urology Association is very skeptical that PNE *ever* exists, I pass it along.

There is a possibility that the PNE story is even more ugly than it looks:

• the surgery typically doesn't work, or makes patients worse, or they get better but not for long (and that doesn't consider the long term consequences). What we know for sure is after 100s of operations there are no reliable statistics on outcome with follow-up.
• at least one person is paid to "help" lead patients to surgery in France. To me this raises important ethical issues.
• The Mayo Clinic stopped PNE surgery, ditto Stanford
• the "proofs" of PNE are dangerous, and (at least in the case of neural blocks) may even cause the damage they are supposed to test for

If the story is as creepy as I think, perhaps something should be done about it -- document it for quackwatch, to start.

[webslave]

Another email:

REASONS FOR CONCERN

DIAGNOSIS

PNE is "diagnosed" in part by neural blocks. The idea is to numb the pudendal nerve, and if when the nerve is numb your symptoms disappear, then the nerve must be the problem. That makes sense except for 2 things: (1) of course the nerve is the problem -- but the nerve can be riled up from prostatitis too. That doesn't prove the nerve is "entrapped"; (2) the neural block itself injures the nerve, which is why the team in Houston won't give more than three. The test may cause the injury it is testing for! Some people report the neural block makes their condition worse.

PNE DOES NOT EVEN EXIST

http://www.uroweb.org/files/uploaded_fi ... icpain.pdf

February 2003
European Association of Urology
GUIDELINES ON CHRONIC PELVIC PAIN

7.2
Pudendal nerve entrapment
....
Despite these claims, the reality is that pudendal nerve neuropathy is probably only a likely diagnosis if the pain is unilateral, has a burning quality and is exacerbated by unilateral rectal palpation of the ischial spine, and the pudendal motor latency is delayed on that side only. However, such cases account for only a small proportion of all those presenting with perineal pain and the proof of the diagnosis resting on relief of pain following decompression of the nerve in Alcock's canal is rarely achieved. The value of the clinical neurophysiological investigations is debatable; some centres in Europe claim that the investigations have great sensitivity (1,2), while other centres, which also have a specialized interest in pelvic floor neurophysiology, have not positively identified any cases.

NO STATISTICS

Do some people benefit from decompression surgery, despite the statement by the European Urological Association that relief is "rare"? Possibly.

But The Nantes team has done 100s of the surgeries. The Houston team has done dozens. There are NO statistics (1) with long term follow up, (2) that account for post-surgical treatments that might be the real reason for perceived improvement. In addition whatever numbers we have don't admit some people get worse from the surgery -- but some people clearly believe they do.

THE TREND IS AWAY FROM PNE SURGERY

1. The Mayo Clinic used to provide PNE surgery. It stopped, reportedly because of bad results. The urologist advocate for that surgery has left the Mayo Clinic.

2. Stanford University no longer provides the PNE surgery.

PAIN MAY RETURN AFTER PNE SURGERY

[link removed]

"I had PNE surgery on May 21. For about two-and-a-half weeks after the surgery I had great pain relief [webslave's comment: this coincides with high pain medication usage and residual anesthesia]. After that it was bad until about three weeks past when I started getting some major relief (at least while standing)."

"Unfortunately I am now back to every day being high pain. For those other post op individuals does this sound familiar or can you give me some insight. I take a small dose of methadone but at present it does not seem to be making a dent in the pain."


PNE SURGERY MAY DESTABILIZE PELVIS

"Literally, my SI joint won't stay in place, I have to wear a belt. It started 4 months aftersurgery, when I started to do stretches and bend."

"I did Physical therapy for 2 months to strengthen the pelvic muscles. It helped, but I am still not right. The answer to the other part of your question, now my PN pain is worse and I have new pains in my legs and back."

"Karen, I'm not panicking, I am dealling with the consequenses of surgery I was not strong enough for. They say "in adults" the ligaments are not needed. I suspect that's because children's ligaments/joints are looser than adults? Anyway, my SI ligaments are loose, partly congenital, partly from previous injury which at the time I thought was that my "low back went out" as they say."

AT LEAST 3 PEOPLE POST PNE SURGERY COMMITTED SUICIDE

One example

http://caringbridgeclassic.org/mn/bradh ... istory.htm

[link removed]

ANOTHER EXAMPLE OF WORSE FROM SURGERY

[link removed]

Dr. Campbell from Johns Hopkins Hospital in Baltimore performed decompression surgery on my left side 6 months ago. My pain is now worse on that side than it was prior to surgery....He seems to be at somewhat of a loss as to what to do about my condition since I've had no improvement.

ANOTHER EXAMPLE OF WORSE FROM SURGERY

[link removed]

I am nine months post op and still have flares in areas that didn't bother me pre op. And I'm the opposite. Hard chairs are a killer for me. We went out to eat for the first time since before surgery and I forgot my cushion. I paid for that for days. I'm especially having more pain all around the coccyx. The areas of pain still change from day to day, and pain is still dictated by activity.

[webslave]

Another worrying development:

There are just a few places in the world to get hi-resolution MRI scans, the kind that can reveal nerves. These MRIs have been used to examine a number of pudendal nerve patients pre-surgery and found them to be anatomically normal.

Some of these patients have then gone on to have PNE surgery, and contrary to what the MRI discloses, the PNE surgeons typically find "gross anatomical abnormalities" that "prove" entrapment.

So who are we going to believe: an objective, permanent record in a hi-res MRI scan, or surgeons who nearly always find "entrapment""?

[webslave]

Dr Rodney Anderson, Professor of Urology at Stanford University, and co-author of A Headache in the Pelvis, writes (emphasis mine):

Hi Mark,

Thank you for contacting me. Firstly let me say how much I admire your web site and the fantastic job you are doing. This is a great service.

With regard to pudendal nerve entrapment syndrome, I would summarize my views quite simply:

1. I believe that such an entity exists and requires careful diagnostic verification, including neuromuscular latency testing. I agree that we don't have good imaging or clear biological definition of the "lesion".

2. It seems reasonable to perform a diagnostic/therapeutic trial of local injection of the nerve when PNE is strongly evident, and I have done so on many occasions. It probably should be repeated several times.

3. I have also performed surgical pudendal nerve dissection as well as placed electrodes on the nerve to alleviate pain syndromes. My experience is limited and without much success. I believe there are surgeons who are having reasonable clinical success with this procedure, but the scientific literature is not robust and needs further clarification; furthermore this procedure should probably only be done under a scientific protocol, approved by a human subjects institutional review board. I am not at present referring patients for these surgical procedures.

4. Even in the setting of what appears to be classic PNE, we find that the pelvic myoneuropathy responds quite well to our myofascial release of trigger points and pelvic relaxation using the paradoxical relaxation techniques. I would pursue this non-surgical avenue to great lengths before entering into a surgical exploration.

Thank you for the opportunity to respond to your query. I have no interest in further debate.

Rodney Anderson

So, poor results, no longer doing it or referring patients for it, needs oversight by a special review board, and supposedly classical PNE patients improve with conservative treatments.

[webslave]

Mark, you may have read my first post about how my wife and I were experimenting and ever since I've felt terrible.

I am keeping the faith that I will heal. It's difficult though. The first thing I did when I felt burning pain in my perineum and penis and the accompanying ano-rectal and coccyx pain was look up the symptoms to see what I had. I immediately came across Pudendal Nerve Entrapment and, in all sincerity, considered "ending it" after reading through peoples' ordeals with surgery, never getting better, etc. As a newly married man I was devastated by what I read, and was haunted by thoughts that my wife and I who love to see shows, movies, eat out at various NYC restaurants, etc. would never be able to do that again. In addition, as we plan on having children and my ejaculatory force and volume have decreased so much, I was frightened that I would never be able to father children.

All this, coupled with the fact that I feel a bruising pain in my right buttocks when I press firmly and associated pain underneath me (posterior upper inner right thigh - alcock's/pudendal canal? isachial tuberous?) I figured the worse. I've been sitting on a donut cushion and it helps. But I get freaked out when I feel that dull bruising pain in the back of my thigh near my anus, or when I press that right cheek. Maybe I'm just nuts for thinking about PNE and the possibility of me causing it by my actions (my wife and I and our experimental foreplay). Either way, it's like a curse having read all the PNE stuff.

I don't have excruciating pain in my sit bones when sitting. But most of my pain is right-sided and that too makes me gravitate to PNE. I know that's not right to do, and anxiety caused by that is hurting me, but I can't help it.

Do you think my sypmtoms (especially the one-sided buttock to posterior crotch pain) is likely caused by PNE?

I saw Dr. David K------- the other day and he is sending me for pelvic floor therapy. Touched the insides of my anus at certain muscles and it hurt like hell. I assume it's b/c he was pressing on tightened muscles and the nerves, but who knows. He didn't want to even talk about PNE yet. He's almost convinced that it's PFD only. Although in telling him everything I forgot (somehow, DUH!) to tell him about the buttock to anterior crotch dull pain (not sharp or shooting). Most of my other symptoms are right sided too, including sore thigh, sore hamstrings, sore rectum.

I'm praying every day it's not PNE. What are your thoughts?

I've been asked to respond to your post. Mark is unavailable for a while.

I do not believe the PNE exists. Neither do many, many medical doctors. A few fringe surgeons in France and a few in the US perform PNE surgery on patients, and the patients with whom I have spoken who have had the surgery suffer from an equal or greater level of pain than they did before the surgery.

Your case is consistent with the NIH definition of CPPS. So what if your pain is one-sided? Surgery of any kind is generally contraindicated for prostatitis/CPPS, according to most expert chronic prostatitis / chronic pelvic pain syndrome researchers.

IMO, it would be wise to try all the treatments endorsed by Mark's website and the ucpps.men forum. Consider contacting Dr. Wise from Stanford.

Please keep reading the forum, trying new non-surgical, safe treatments, and stay away from the quacks promising quick fixes and cures. Most importantly, never give up hope!

Best wishes,
MastCells
Moderator, ucpps.men

I would add that one-sidedness or one sided pain or pain that is predominantly on one side or more on one side than the other is common in CP/CPPS/pelvic myoneuropathy and does not denote the need for surgery. I personally had pain more on one side than the other years ago, and today I have no symptoms, all without surgery.

[webslave]

I have recently heard from someone who reports that he spoke to one of the US-based PNE surgery doctors on the phone, and said the guy sounded "both pessimistic and possibly drunk."

This is just one man's opinion, so it does not carry a lot of weight, but I felt this patient's impressions should be conveyed to the readers of our forum.