Publication Abstract - A Must Read!

[Violet M]

And now nerve attachment —long the key finding to justify a PNE diagnosis, the gold standard— is discarded as "not the only possible variable". In other words, that didn't pan out so drop it and find another justification.

So out with the old reasoning, and in with the new, only this time there is no attempt to provide proof. Now it's right in your face claims of unprovable (or disprovable) conditions, like genetic predispositions.

This is a classic case of denial and of rationalizing away findings that show the whole PNE diagnosis is deeply suspect.

Not sure where you ever got the idea that nerve attachment has long been the key finding to justify a PNE diagnosis. I always thought nerve compression between the 2 ligaments was the most likely cause.

Hmmm...so according to your line of reasoning, in order for PNE to exist there has to be proof of what causes it? Well, how does that work for things like MS, cancer, and type I diabetes? Often the root cause is unknown. Does that mean they don't exist?

According to you, the PNE diagnosis is deeply suspect. It seems to me that you are the one denying PNE exists. So who is in denial here?

Violet

[cpps-admin]

Surgical "release" of the nerve has always been touted as the final step in pudendal nerve entrapment diagnosis. See http://www.perineology.com/files/antolak-athens2006.pdf

The finding of “tethering” of the nerve, considered up to this point as the key sign of entrapment, has now been shown to be normal. It effectively shoots the whole PNE diagnosis in the head.

The paper states

We prefer the term neuralgia rather than pudendal nerve entrapment because so many of our patients have relief following self-care or pudendal nerve blocks (see treatment below). Entrapment can only be observed at surgery.

"Pudendal neuralgia" is so vague as to be the indistinguishable from conditions like CP/CPPS. The use of cushions with cutouts (as recommended in the paper above) is routine in CPPS. CPPS is usually completely treatable with conservative therapies, whereas the nebulous "pudendal neuralgia" puts you on a slippery slope to a PNE diagnosis and a date with a surgeon (which is very profitable for the surgeon). It looks a lot to me like a way of monetizing a benign condition.

As wikipedia states

a 2009 review study found both that "prevalence of PN is unknown and it seems to be a rare event" and that "there is no evidence to support equating the presence of this syndrome with a diagnosis of pudendal nerve entrapment," meaning that it is possible to have all the symptoms of pudendal nerve entrapment (otherwise known as pudendal neuralgia) based on the criteria specified at Nantes in 2006, without having an entrapped pudendal nerve

That beggars the question: why would anyone ever submit to surgery for a condition where:

1. Its not clear whether the condition even exists (symptoms, and even some treatments, overlap extensively with other conditions)
2. Surgery is unsuccessful in about half the cases (see paper above) — which is a conservative statistic, given that this figure is reported by the surgeons themselves, and as beneficiaries they are unreliable sources. A disinterested investigator's findings (missing thus far) would be an eye-opener, one suspects. I would not be surprised to find that the vast majority of patients are still in some sort of pain a year after surgery (in fact, that is what has been reported anecdotally)
3. The chief justification for the surgery ("untethering" the nerve) has been shown to be false

Often the root cause is unknown. Does that mean they don't exist?

So now we go from entrapment, attachment and tethering to "cause unknown". If it's cause unknown, why not call it chronic pelvic pain like everyone else does, and drop the whole "PNE" angle, with all the attendant urgings to go under the surgeon's knife that you see here? (You know, the subtle ones like "cured by surgery" in the signatures)

It seems to me that you are the one denying PNE exists.

Yes, until we have some proof of entrapment, it's a completely bogus diagnosis.

[Violet M]

The finding of “tethering” of the nerve, considered up to this point as the key sign of entrapment

I don't care how many times you say it CPPS, that doesn't make it true. Tethering of the nerve is not the key sign of entrapment. Never has been, never will be, no matter how many times you say it.

The primary cause of PNE is not due to the nerve being tethered in the SS ligament.

You can read Robert's article here. http://www.pudendalhope.info/sites/defa ... Robert.pdf It lists constriction between the SS and ST ligament, the pudendal canal, or straddling the falciform process of the ST ligament.

If it's cause unknown, why not call it chronic pelvic pain like everyone else does, and drop the whole "PNE" angle, with all the attendant urgings to go under the surgeon's knife that you see here? (You know, the subtle ones like "cured by surgery" in the signatures)

According to your logic, "saying you are cured" equals "urging someone to get surgery". A huge leap in logic.

Violet

[cpps-admin]

Tethering of the nerve is not the key sign of entrapment. Never has been, never will be,

Let's go back to what I said earlier in this thread:

The problem that needs to be addressed is that the PNE surgeons have not yet acknowledged that adhesions of the pudendal nerve are normal. For instance, here is Dr Aaron Filler claiming adhesions are pathological:

The term “entrapment” is used to convey any number of problems occurring at a particular point along a nerve, according to Dr. Filler. “The nerve becomes irritated—pinched, squeezed, narrowed, or stuck on something, a condition called an adhesion.” Nerves may slide freely between soft, fatty tissues along most of their course but become pinched or squeezed through tight spots, according to Dr. Filler. Swelling can occur in these areas, increasing compression of the nerve.

Note that Filler is billed as "the world’s leading expert in treatment of nerve pain"

Now clearly we have a problem when the top expert is characterising the nerve as pathological if it is "stuck on something", when being "stuck on something" is actually the norm (as per the new study)!

Adding to the confusion, here are other "experts" opining on the amorphous nature of this new condition called PNE:

Hibner: "At the end of the day, no one can say with 100 percent certainty that the nerve is compressed"

Dr. Conway: "How would you diagnose PNE prior to operating on somebody? The fact is you can’t."

Source: http://www.pelvicpainrehab.com/pelvic-p ... -answered/

Now when someone has a surgery or accident that is followed immediately by symptoms such as unilateral pelvic pain and especially sitting pain, and especially if there is numbness or incontinence, there is a strong case for a PNE diagnosis, and, after injections to make sure, surgery. Otherwise, no, it's rare and should not be diagnosed as frequently as it apparently is. This forum should be rigorous about sending people without unambiguous histories on their way to forums dealing with much more common causes of pelvic pain. I am appalled to see how many posters here have case histories that do not suggest PNE at all, but still the moderators and site owners do not raise a red flag or suggest that other conditions be investigated. Even if someone comes here and reports unsuccessful treatment for CPPS or IC, that does not mean they have PN or PNE! I've seen people try treatment after treatment for CPPS without success, then suddenly (after many years in some cases) they try something new and Boom!, huge improvement or cure.

Rounding off this unhappy picture is a paucity of published studies. The only studies we have are mostly written by the surgeons who profit from the surgery, and the results differ so widely (from very low to very high success rates) that nothing can be said to be known about the validity of the PNE diagnosis yet.

PNE is a vague and nebulous diagnosis, rare at best according to the most reliable sources (completely independent studies), and nobody should entertain it before every other condition has been exhaustively investigated.

There is a reason why insurance companies do not cover PNE surgery, viz. that it is unproven (its effectiveness has not been established).

According to your logic, "saying you are cured" equals "urging someone to get surgery". A huge leap in logic.

Not when the few cured* people here list surgery as the way they were cured. It's subtle, but powerful.

(* - "cured" after a fashion; investigation of the surgical cures mostly shows there is still some level of dysfunction or pain)

[nonsequitur]

pudendalhope says that the tethering of the nerve is indeed a sign of pudendal nerve entrapment. The information has been reviewed by the pudendalhope medical advisers.

Pudendal nerve entrapment (PNE) is a more specific term describing a neuropathy or neuralgia that is associated with the nerve being tethered by fascia, compressed by ligaments, enlarged muscles, and/or other structures. Sometimes the nerve is restricted so that it cannot glide easily resulting in a stretch or tension injury to the nerve. Generally if the nerve is impinged upon by tight, tense muscles it is not considered a true entrapment because surgical intervention is not required to relieve the impingement. If the impingement is due to tight muscles, physical therapy might help relieve the tension.

http://www.pudendalhope.info/node/8

[egley]

Hi everyone,

I would like to thank everyone who shared on this thread. It has been educational for me.

I would like to add my particular symptoms to the data presented here.
My testicular pain is usually gone by a good night's sleep.
When I sit on the toilet, the pain in the testicle will slowly decrease.
I have been sitting on ice for about a year now, which allows me to sit. This causes other problems but don't want to confuse things by adding another issue.

My first PNE diagnosis was arrived at by Dr. Weiss injecting lidocaine (or something similar) near the spot on my pudendal nerve where he thought there would be some issues (sorry, it was a long time ago so I am forgetting the details). My testicular pain subsided to zero, or at least it was very minimal.

If I sit (without the ice) my testicular pain slowly rises, and will become intolerable if the sitting is to continue.
On the other hand, I can lie down with no testicular pain.

An entrapment seems to explain my particular responses better than muscular issues. I do have muscular issues (and see a PT), but I believe these are caused by the nerve itself, not vice versa.

Thanks!
Skip Egley

[Violet M]

The problem that needs to be addressed is that the PNE surgeons have not yet acknowledged that adhesions of the pudendal nerve are normal.

Fixation by the nerve to to SS ligament by connective tissue (which could be what you are born with and be perfectly normal), as was discussed in the article that nyt posted at the beginning of this thread, is not the same as adhesions/scar tissue that form due to injury or as a result of pelvic surgery. So I'm sorry CPPS, but I'm not taking your word for it that adhesions of the pudendal nerve are always normal and could never produce symptoms of PN or pelvic pain.

Note that Filler is billed as "the world’s leading expert in treatment of nerve pain"

Health Organization for Pudendal Education nor its directors or moderators have ever billed Filler as the world's leading expert on treatment of nerve pain but I would certainly take his word for it over yours.

Adding to the confusion, here are other "experts" opining on the amorphous nature of this new condition called PNE:

Hibner: "At the end of the day, no one can say with 100 percent certainty that the nerve is compressed"

Dr. Conway: "How would you diagnose PNE prior to operating on somebody? The fact is you can’t."

Source: http://www.pelvicpainrehab.com/pelvic-p ... -answered/

Both Conway and Hibner are referring to before surgery in the interview you quoted. We have for years repeated on the forum what the surgeons said in this interview, that it is difficult to tell with certainty before surgery whether the nerve is entrapped. That doesn't mean the nerve is never entrapped.

I am appalled to see how many posters here have case histories that do not suggest PNE at all, but still the moderators and site owners do not raise a red flag or suggest that other conditions be investigated.

Flat out lie, CPPS-admin. We frequently recommend that other diagnoses be considered and options other than surgery be tried before considering surgery. We have frequently said surgery is a last resort. So I'm not going to allow you to come on this forum and make bold-faced lies. In the terms and conditions of this forum you agree to tell the truth or risk being banned. I suggest you get your facts straight if you want to continue posting here.

According to your logic, "saying you are cured" equals "urging someone to get surgery". A huge leap in logic.

Not when the few cured* people here list surgery as the way they were cured. It's subtle, but powerful.

By your logic then, no one on this forum should be allowed to say they were cured by surgery. Really?

Violet M

[nonsequitur]

Fixation by the nerve to to SS ligament by connective tissue (which could be what you are born with and be perfectly normal), as was discussed in the article that nyt posted at the beginning of this thread, is not the same as adhesions/scar tissue that form due to injury or as a result of pelvic surgery.

That is not correct. The paper describes an entrapment of the pudendal nerve by hardened connective tissue in the cadavers they examined. The nerve was found completely stuck mechanically. There is no need for an injury to have adhesions. An inflammation or a sedentary life is enough to create adhesions. Dr. Hibner and Dr. Castellanos do not specifically address trauma. They categorize all adhesion as permanent compression of the nerve thus the cause of pudendal nerve entrapment.

Michael Hibner, MD, PhD, FACOG, FACS
Mario Castellanos, MD
Nita Desai, MD
James Balducci, MD, MBA, FACOG
Glob. libr. women's med.,
(ISSN: 1756-2228) 2011; DOI 10.3843/GLOWM.10468

Mechanical injury occurs from compression, stretching or transection of the nerve. Compression, termed pudendal nerve entrapment, is the most common form of mechanical injury.Although the terms “pudendal nerve entrapment” and “pudendal neuralgia” have been used interchangeably, caution must be taken labeling patients with “pudendal nerve entrapment” without evidence of mechanical compression. Compression can be transient or permanent. Transient compression is caused by spasm of the surrounding muscles, most often the obturator internus muscle. In our practice we have also noticed there is a group of patients who develop pudendal pain after intense exercise programs, especially those including rapid flexion of the body at the trunk or from extensive use of the hip adductor fly machine. Permanent compression of the nerve is caused by adhesions or foreign bodies such as mesh or suture entrapping the nerve.19

[nyt]

nonsequitur, I have read the full paper and no where in this paper does it state "an entrapment of the pudendal nerve by hardened connective tissue in the cadavers they examined."

From the Abstract that was originally posted the words exactly were:

"In all specimens, the pudendal nerve was fixed by connective tissue to the dorsal surface of the sacrospinous ligament." .... "Fixation of the pudendal nerve to the dorsal surface of the sacrospinous ligament was a consistent finding; thus, pudendal neuralgia attributed to nerve entrapment may be overestimated."

From the Results section of the paper:

"In addition, our dissections reveal relative fixation of the PN through connective tissue attachments on the dorsal surface of the SSL and in the pudendal canal."

Further down in the Results section where they discuss the figure:

"In all specimens, the PN was fixed by connective tissue to the dorsal surface of the SSL."

This is what is stated in the figure panel A:

"Transection of the left CSSL complex 1 mm medial to the ischial spine (blue pin) exposes the PN and vessels on the dorsal surface of the SSL. Note that the PN appears fixed by connective tissue to the dorsal surface of SSL."

Following is the exact words from their Discussion section of the paper:

"An interesting finding of this study was the fixation of the PN on the dorsal surface of the SSL. These connective tissue attachments were found not only on the dorsal surface of the SSL-IS junction but within the pudendal canal. Whereas previous authors have noted that the PN is surrounded by connective tissue sheath in the pudendal canal, we found no specific descriptions or assessments of the mobility or connective tissue interactions of the PN on the dorsal surface of the SSL.

This finding has potential implications in the surgical treatment of pudendal neuralgia, and it may be misleading to attribute pudendal neuralgia to nerve entrapment. Thus, procedures seeking to decompress the PN may not address the true etiology. In fact, these procedures may potentially result in significant complications, given the complexity of surrounding nerve and vascular anatomy.

There are inherent limitations to the use of cadavers for investigating surgical anatomy, including tissue deterioration and absence of muscular tone. Generalizeability of our findings may be limited because all specimens were white and of older age and with a lower body mass index. In addition because only 13 specimens were examined, the range of anatomic variability should be confirmed with larger anatomic studies. Lastly, the effect of aging on nerve and connective tissue anatomy is unclear."

For me, there is no doubt that connective is holding the pudendal nerve on the dorsal surface of the SSL. I do believe the paper demonstrates this finding. However, connective tissue does not mean scar tissue and I did not see where they ever mentioned scar tissue holding the pudendal nerve on the dorsal surface of the SSL nor hardened. As I previously posted early in this thread a lengthy discussion on connective tissue and scar tissue with links to other pages discussing how scar tissue is formed. Each of us must decide for themselves the importance/significance of the finding that connective tissue fixes the pudendal nerve to the dorsal surface of the SSL and its role in entrapment at the SSL.

CPPS-admin, in regards to Dr. Hibner and Dr. Conway stating that entrapment of the pudendal nerve cannot be determined until you are opened at the time of surgery. They are making a statement to their patients based on the limitations of the current MRI techniques, pudendal nerve latency tests limitations and their own clinical experience. It seems to me there are group on the forum that complain the doctors aren't honest but complain when they make a statement to their patients that bears the limitations of our current technology in determining whether a patient should consider pudendal surgery.

I would like to see a published study that indicates the number of patients that see a pudendal specialist for the possibility of PNE that eventually undergo surgery. I'm sure it will vary from physician to physician.

[cpps-admin]

So I'm sorry CPPS, but I'm not taking your word for it that adhesions of the pudendal nerve are always normal and could never produce symptoms of PN or pelvic pain.

We'll agree to disagree on that. I side with the authors of the study (who suggest that PNE is overdiagnosed and attachment is normal), you seem to be siding with another anonymous poster (who claims that adhesions are "scar tissue" and different to attachments), and your gut feeling on the issue. You do not cite any authority to counter mine.

Health Organization for Pudendal Education nor its directors or moderators have ever billed Filler as the world's leading expert on treatment of nerve pain but I would certainly take his word for it over yours.

Is the barb at the end of that sentence necessary? What happened to polite discourse?

it is difficult to tell with certainty before surgery whether the nerve is entrapped. That doesn't mean the nerve is never entrapped.

1) If entrapment cannot be diagnosed reliably pre-surgery, then it's a very serious, destructive and expensive exploratory procedure. One can see why insurance won't cover it!
2) I have never said the nerve is "never" entrapped. That's a straw man argument. A straw man is a common form of argument and is an informal fallacy based on giving the impression of refuting an opponent's argument, while actually refuting an argument which was not advanced by that opponent

I am appalled to see how many posters here have case histories that do not suggest PNE at all, but still the moderators and site owners do not raise a red flag or suggest that other conditions be investigated.

Flat out lie, CPPS-admin. We frequently recommend that other diagnoses be considered and options other than surgery be tried before considering surgery. We have frequently said surgery is a last resort. So I'm not going to allow you to come on this forum and make bold-faced lies. In the terms and conditions of this forum you agree to tell the truth or risk being banned.

I can point to numerous threads where the poster described vanilla CPPS or IC symptoms, yet the assumption is made that this is a pudendal nerve problem, and CPPS/IC are never mentioned. So it's not a lie.

I suggest you get your facts straight if you want to continue posting here.

Once again, incivility and threats of banning only undermine your position. Banning opinions you don't like, as you did with Ezer, is a sign of weakness.

By your logic then, no one on this forum should be allowed to say they were cured by surgery. Really?

No, that does not follow. However, from my own experience running a similar forum, I find that people who are cured (or so much improved that their symptoms are not front of mind) almost invariably move on with life and leave the forum. It is instructive that many of the PNE surgery "cures" are still here, on this forum, posting advice.

I can't help but think of someone who ran another PNE forum. Just before he closed it, after years of telling his readers to investigate PNE surgery, he admitted that he himself was still taking high doses of opioid painkillers for extensive pain. And when I emailed him privately, before he closed the forum, to discuss the PNE vs CPPS/IC issue, he quickly became very abusive to me. The immediate reversion to incivility and abuse is a hallmark of a vulnerable position.