Publication Abstract - A Must Read!

[nonsequitur]

Violet M wrote:
I don't have access to the full study. Could you email it to me? I think you have my email address.

I suspect that you are close to nyt and she can email it to you.

Obviously that would be worrisome if the person wasn't having any pain. No one in their right mind would do that.

I was not suggesting people with no pain should have surgery. It was hypothetical.

People have surgery because they choose to and one of the purposes of this forum is to help people make an educated choice.

No No No. People have surgery because they are desperate and go consult with a PN surgeon. Said surgeon more often than not is a very convincing, charismatic, and charming salesperson. People get enrolled into surgery before they realize what they have signed up for.

BTW, I don't see the word adhesions in our definition

You have dissected every single word in that study over and over trying to disprove this and that (I don't think you have examined as attentively any of the PNE surgery publications).
Listen my surgery report describes scar tissue and abnormal fibrosis. That cannot possibly be what was found. I never had a pelvic accident. By definition it was simply hardened and dense connective tissue, just like those "entrapped" cadavers they examined.

[cpps-admin]

Violet, if you are referring to the Maldonado study, it can be seen at http://www.prostatitis-forum.com/?tab=6

Violet, you have (or had) Persistent Genital Arousal Disorder (PGAD). PGAD is now known as "Restless Genital Syndrome" (ReGS) & is characterized by unwanted, unpleasant genital sensations, restless legs, and/or overactive bladder, as well as neuropathy of the dorsal nerve of the clitoris. So far, ReGS has been reported almost always in females (and as we know, we would not only have a trapped pudendal nerve in females, would we?) There is now a study with 2 males, so it continues to be extremely rare in men (and men, you would think, have more chance of injuring/scarring the pudendal nerve, right?)

Although I am not very familiar with your case as I do not follow all the postings at this site extensively, I have some issues with your PNE-linked PGAD diagnosis, if you'll indulge me:

1. You are aware that PGAD is vanishingly rare with only ~7000 cases known worldwide, while CP/CPPS and IC/PBS are suffered by many millions (over 140 million if incidence is 2%, which is conservative)? From wikipedia: "The prevalence of PGAD is unknown but based on a Dutch study there are at least 7000 cases worldwide."
2. Where is your published evidence that PGAD/ReGS is linked in any way to pudendal nerve entrapment? The study I found here suggests PGAD can be cured by physiotherapy, suggesting PGAD could be a rare subset of the Interstitial Cystitis cohort, and this study is further evidence. BTW, those were also the only studies I could find on Pubmed linking pudendal nerve to PGAD.

The most recent PGAD review study suggests that it is linked to vulvodynia and restless leg syndrome. In fact, if you search Pubmed for PGAD, you get a wide variety of credible etiologies and case histories, all of them more convincing than the pudendal nerve compression theory. Spend an hour or two doing some research on this. You may get some insights that weaken your conviction that PGAD is PNE linked.

When the pudendal nerve IS linked to PGAD/ReGS, it is by way of small fiber sensory neuropathy in the pudendal nerve:

Conclusion: .... the finding of typical sensory abnormalities of the genital end branches of the pudendal nerve in males and females--as previously reported--provides strong evidence for Small Fiber Sensory Neuropathy as a common cause of ReGS/PGAD. [study]

Small fiber sensory neuropathy is not a compression effect, it is a nerve disorder that often gets worse the longer a nerve is:

Small Fiber Sensory Neuropathy

Small fiber sensory neuropathy (SFSN) is a disorder in which only the small sensory cutaneous nerves are affected. The majority of patients experience sensory disturbances that start in the feet and progress upwards. These patients have what is called a length-dependent SFSN. This type of SFSN is often due to diabetes or impaired glucose metabolism (i.e. early or pre-diabetic state) and may progress to typical diabetic polyneuropathy. However, in a significant percentage of patients, no underlying etiology is found and the patients have idiopathic SFSN. A small percentage of patients with SFSN experience sub-acute onset sensory disturbances diffusely over the whole body, including the trunk and sometimes even the face. These patients have non-length-dependent SFSN and almost all cases are idiopathic.

Symptoms

The symptoms of small fiber sensory neuropathy are primarily sensory in nature and include unusual sensations such as pins-and-needles, pricks, tingling and numbness. Some patients may experience burning pain or coldness and electric shock-like brief painful sensations. Since SFSN usually does not involve large sensory fibers that convey balance information to the brain or the motor nerve fibers that control muscles, these patients do not have balance problems or muscle weakness. In most patients, these symptoms start in the feet and progress upwards. In advanced cases, it may involve the hands.

From http://www.hopkinsmedicine.org/neurolog ... pathy.html

That describes SFSN in areas other than the pudendal nerve, but that's okay because we know PGAD/ReGS is rare and so we wouldn't expect the authors to include that small subset in this broad definition.

BTW, what are your symptoms, CPPS? Have you ever told your story on this forum? I would be interested to hear it.

It's at my website: http://www.chronicprostatitis.com/about-the-webmaster/

[wannagetbetter]

Violet and the Other Moderators - Thank you for continuing to give your time to this site. It is much appreciated!!!

[sage721]

Hi everyone,

I think we have to focus on the issue of compression. As I have stated before, my pain originated from sitting. Meaning symptoms originally came on upon sitting. I never had a surgery nor an accident. Woke up one morning to this mess. As time went on, symptoms progressed and new symptoms came on. However, when I sit on a toilet seat, the symptoms subside. They go away. Isn't this the tell tale sign of compression? Of the PN/PNE diagnosis? Isn't it just that simple? I sit in a car or on a chair, the symptoms exacerbate. I get up and go to a toilet seat and the symptoms are gone! Doesn't this indicate pressure is bringing on the symptoms? Now, the questions is whether it is pressure on the spastic muscles is further compressing the nerve and increasing symptoms or is pressure on the nerve causing the muscles to further spasm. Chicken or egg arguement. So, can we take a survey? I don't think that we've addressed this issue with everyone on here. I think it would indicate who surgery helps and who it doesn't. CPPS individuals usually don't find relief when sitting on a toilet seat. With PN/PNE/Piriformis Syndrome they do.

Thanks.

Sage

[Violet M]

Spend an hour or two doing some research on this. You may get some insights that weaken your conviction that PGAD is PNE linked./

CPPS, I have done extensive research on PGAD. You can read my conclusions and the conclusions of 2 physicians in a previous newsletter published on our website. http://www.pudendalhope.info/sites/defa ... ne2013.pdf You can also read the list of resources at the end of the article.

I can think of 5 people off the top of my head (besides myself), good friends, who have had pudendal neuralgia and PGAD. All of them had some type of injury or trauma to the pudendal nerve. There is nothing you can say or show me that will weaken my conviction that PGAD can be PNE related. I don't believe PNE is the only cause of PGAD but clearly it is one of them.

Violet and the Other Moderators - Thank you for continuing to give your time to this site. It is much appreciated!!!

Thanks, Wannagetbetter. I hope you have found some helpful information here.

Violet

[cpps-admin]

CPPS, I have done extensive research on PGAD. You can read my conclusions and the conclusions of 2 physicians in a previous newsletter published on our website. http://www.pudendalhope.info/sites/defa ... ne2013.pdf You can also read the list of resources at the end of the article.

Violet, as far as I can tell, the newsletter contains an unpublished study by Dr Beco. Is that correct? If so, be aware that using unpublished studies as evidence for anything is enormously unwise, disseminating the studies even worse, and I strongly advise the management of this website to eschew this practice.

I can think of 5 people off the top of my head (besides myself), good friends, who have had pudendal neuralgia and PGAD. All of them had some type of injury or trauma to the pudendal nerve. There is nothing you can say or show me that will weaken my conviction that PGAD can be PNE related. I don't believe PNE is the only cause of PGAD but clearly it is one of them.

I presume your good friends with PGAD are women? Women who have "all had some type of injury or trauma to the pudendal nerve" which leaves them with PGAD, whereas men, who are much more likely to suffer traumatic injuries, almost never get PGAD. Does this pass the sniff test? Even you, Violet, say that the #1 cause (in your opinion) is exercise-related injury to the nerve, but we all know that men are much, much more physically active than women. It's illogical.

There are so many contradictions. From the unpublished study, Beco says:

"More research is for sure necessary to understand completely this strange but very frequent symptom"

A few lines later, Dr Echenberg contradicts him with "PGAD in women is uncommon" (which is correct) and in men, almost unknown (Echenberg: "It is not clear whether there is a similar disorder in men"). The fact that it is so rare/unknown in men should immediately raise a cautionary flag when thinking of etiology, since men and women do not differ in pudendal nerve placement, and in fact men are surely much more likely to injure the pudendal nerve.

Echenberg then goes on to say that PGAD is part of (a "subset of") chronic pelvic pain and IC/PBS, and that patients should "find and treat all “triggers” which may be pudendal neuralgia, IC/PBS and others, treat the pain adequately and always find a qualified pelvic floor physical therapist" (which is more or less what our website advocates too).

BTW, I have found "pudendal neuralgia" is simply yet another way of describing urologic chronic pelvic pain syndrome (UCPPS), no more. Alternate terms are CP, CP/CPPS, IC, PBS, CPP, CAPPS, and there are others. IMO the term "pudendal neuralgia" is largely dispensable because it serves to focus attention misleadingly on one tiny aspect of the anatomy, whereas pelvic pain conditions are usually psychoneuromuscular conditions that need treatment on many fronts (surgery being contraindicated).

[Violet M]

Violet, as far as I can tell, the newsletter contains an unpublished study by Dr Beco.

It's not a study. It's an article Dr. Beco wrote for our website and it's based on his own experience in treating patients. People can choose whether to believe him or not.

I presume your good friends with PGAD are women? Women who have "all had some type of injury or trauma to the pudendal nerve" which leaves them with PGAD, whereas men, who are much more likely to suffer traumatic injuries, almost never get PGAD. Does this pass the sniff test? Even you, Violet, say that the #1 cause (in your opinion) is exercise-related injury to the nerve, but we all know that men are much, much more physically active than women. It's illogical.

Can't remember where I ever said exercise is the #1 cause of injury to the pudendal nerve because I don't know for sure what the #1 cause is. Can you point to where I said that?

We have had a number of men post on the PN forums who had PGAD. I have emailed with some men who have it.

A few lines later, Dr Echenberg contradicts him with "PGAD in women is uncommon" (which is correct) and in men, almost unknown (Echenberg: "It is not clear whether there is a similar disorder in men").

Dr. Echenberg is an obgyn which naturally means his experience has been in seeing women. I think he sees men now though, and he is also now aware that PGAD exists in men.

BTW, I have found "pudendal neuralgia" is simply yet another way of describing urologic chronic pelvic pain syndrome (UCPPS), no more. Alternate terms are CP, CP/CPPS, IC, PBS, CPP, CAPPS, and there are others. IMO the term "pudendal neuralgia" is largely dispensable because it serves to focus attention misleadingly on one tiny aspect of the anatomy, whereas pelvic pain conditions are usually psychoneuromuscular conditions that need treatment on many fronts (surgery being contraindicated).

The pudendal nerve is a major nerve with three branches that innervate many areas of the pelvis including the bladder sphincter, the anal sphincter, the perineum, the lower third of the vagina, some of the pelvic floor muscles in men, and the clitoral/penile area so I completely disagree with you that the pudendal nerve is one tiny aspect of the anatomy. It is the primary nerve involved in sexual arousal.

http://www.ncbi.nlm.nih.gov/pubmed/10363763

https://www.dartmouth.edu/~humananatomy ... er_38.html

Superficial Perineal Muscles (figs. 38-1D and 38-2).

"Three muscles are found bilaterally. In the male, the bulbospongiosus arises from the perineal body and the fibrous raphe on the bulb of the penis and is inserted into the superior aspect of the corpus spongiosum. It aids in expelling urine or semen. The ischiocavernosus arises from the ischial ramus and is inserted on the crus penis. It helps to maintain erection by compressing the veins in the crus. The superficial transverse perineal muscle arises from the ischial ramus and is inserted into the perineal body. All three superficial muscles are supplied by the pudendal nerve.
In the female, the bulbospongiosus is separated from the contralateral muscle by the vagina. It arises from the perineal body, passes around the vagina, and is inserted into the clitoris. The ischiocavernosus is inserted on the crus clitoridis (see fig. 38-1C)."

I'm not sure how you could possibly conclude that a term for disease of the pudendal nerve, pudendal neuralgia, is dispensible. It innervates so many important pelvic structures. Can you prove it isn't the cause of CPPS in some people?

Violet

[Violet M]

You have dissected every single word in that study over and over trying to disprove this and that (I don't think you have examined as attentively any of the PNE surgery publications).
Listen my surgery report describes scar tissue and abnormal fibrosis. That cannot possibly be what was found. I never had a pelvic accident. By definition it was simply hardened and dense connective tissue, just like those "entrapped" cadavers they examined.

Not really because like I said, I haven't seen the whole study so I could not dissect every word of the study. All I had access to is the abstract. But even so, I think it's good to debate the pros and cons of an issue.

BTW, adhesions can occur in people who never had surgery. http://www.webmd.com/a-to-z-guides/adhe ... print=true

Scar tissue can form over years of microtrauma. It doesn't have to be some major incident. http://nurse-practitioners-and-physicia ... njury.aspx

Nonsequitur, you are very new to the forum. I would be interested to hear more about your story/surgery, etc. Who did you have surgery from and how are you doing now?

Violet

[cpps-admin]

It's not a study. It's an article Dr. Beco wrote for our website and it's based on his own experience in treating patients.

It's presented in study format, with numbered authors, tables, and a commentary at the end. Looks like a study. Very misleading! There should be a disclaimer for readers saying that this is an unpublished opinion, no more.

In fact, it looks like a study that failed peer review and could therefore not be published.

Can't remember where I ever said exercise is the #1 cause of injury to the pudendal nerve because I don't know for sure what the #1 cause is. Can you point to where I said that?

In the same newsletter you listed the causes of PGAD. Since the causes are not listed alphabetically, one naturally assumes you have listed them in order of importance:

What Causes Pudendal Neuropathy Leading to PGAD?

• Exercise (including weightlifting, horseback riding, skiing, cycling, elliptical machine, step
aerobics or a combination of these)
• Pelvic surgery
• Childbirth
• Pudendal nerve blocks

If that is not the right interpretation, what IS the order of frequency?

We have had a number of men post on the PN forums who had PGAD. I have emailed with some men who have it. Dr. Echenberg is an obgyn which naturally means his experience has been in seeing women. I think he sees men now though, and he is also now aware that PGAD exists in men.

Violet, no. There are only a few cases worldwide reported in men. The first ever reported in a male in the scientific literature was in 2015
http://www.ncbi.nlm.nih.gov/pubmed/25767735
(That male was cured by the antidepressant Paxil, interestingly. Paxil is sometimes used to treat anxiety spectrum disorders, such as OCD, panic disorder, generalized anxiety disorder and body dysmorphic disorder ... Anxiety and/or stress is a big part of CP/CPPS as well.)

The pudendal nerve is a major nerve with three branches that innervate many areas of the pelvis including the bladder sphincter, the anal sphincter, the perineum, the lower third of the vagina, some of the pelvic floor muscles in men, and the clitoral/penile area so I completely disagree with you that the pudendal nerve is one tiny aspect of the anatomy.

No, not a tiny aspect of the anatomy, but a small aspect of the condition. It's a highway for the nerve impulses, not the cause of the syndrome.

There is a reason why people with chronic pelvic pain frequently have associated conditions like CFS, IBS and fibromylagia, and it's because this syndrome is not centred on a tiny dysfunction in a small part of a nerve in the pelvis. Studies show brain changes, hormone changes, specific psychological profiles, and more. There is much more to this condition than a pinched nerve!

I'm not sure how you could possibly conclude that a term for disease of the pudendal nerve, pudendal neuralgia, is dispensible. It innervates so many important pelvic structures. Can you prove it isn't the cause of CPPS in some people?

Yes, because there is now ample published evidence that urologic pelvic pain syndromes are whole-body conditions. In fact, the brain is one of the new areas of investigation! If you join my forum, you can see all the evidence listed there in the Research forum. Violet, register under your current username and I will authorize you. Tell me here what email address you'll be using (munge it up e.g violet at thisdomain . kom)

[Violet M]

You've made some assumptions that you cannot back up, CPPS. Following are 3 of them:

1. In fact, it looks like a study that failed peer review and could therefore not be published.
2. Since the causes are not listed alphabetically, one naturally assumes you have listed them in order of importance
3. No, not a tiny aspect of the anatomy, but a small aspect of the condition. It's a highway for the nerve impulses, not the cause of the syndrome.

All assumptions, nothing more. You can't prove pudendal neuralgia is not the cause of the syndrome. If pudendal neuralgia cannot be the cause for chronic pelvic pain, that's like saying trigeminal neuralgia cannot be the cause for chronic face pain. Or that neuralgia of a nerve cannot be the cause for pain anywhere in the body.

Violet, no. There are only a few cases worldwide reported in men. The first ever reported in a male in the scientific literature was in 2015

What do you mean when you say, "Violet, no"? Are you disagreeing with me that men have posted on the PN forums regarding PGAD before or that I've talked to men with PGAD?

The fact that PGAD has just recently been reported in literature doesn't mean it never existed before.

http://www.ncbi.nlm.nih.gov/pubmed/25767735
(That male was cured by the antidepressant Paxil, interestingly. Paxil is sometimes used to treat anxiety spectrum disorders, such as OCD, panic disorder, generalized anxiety disorder and body dysmorphic disorder ... Anxiety and/or stress is a big part of CP/CPPS as well.)

So one person was cured by Paxil and you conclude anxiety was what caused his PGAD. What about the people who are not cured by SSRI's? Based on your logic that would prove their PGAD wasn't due to anxiety.

There is a reason why people with chronic pelvic pain frequently have associated conditions like CFS, IBS and fibromylagia, and it's because this syndrome is not centred on a tiny dysfunction in a small part of a nerve in the pelvis. Studies show brain changes, hormone changes, specific psychological profiles, and more. There is much more to this condition than a pinched nerve!

I'm not sure how you could possibly conclude that a term for disease of the pudendal nerve, pudendal neuralgia, is dispensible. It innervates so many important pelvic structures. Can you prove it isn't the cause of CPPS in some people?

Yes, because there is now ample published evidence that urologic pelvic pain syndromes are whole-body conditions.

So you say you can prove that CPPS is not caused by a pudendal neuralgia. The problem in your logic is that there are many people who are going along in their lives living happy normal lives when an incident happens that brings on pain suddenly -- an incident such as childbirth in which the pudendal nerve is injured, pelvic floor repair surgery with pudendal area pain immediately following, a new exercise routine with pudendal region pain soon after, or an accident that involves the pelvis and pudendal region pain developing immediately after. It doesn't make sense to assume all of these people suddenly developed a psychological profile that caused them to get pelvic pain and that an injury to the pudendal nerve could not possibly be the cause of their CPPS.

Just because you can find something published in a study doesn't make it true for every person. I completely reject that CPPS had anything to do with my psychological profile. If it did, how come I am doing so well now without fixing my psychological profile? Sorry, man, it doesn't add up. On our forum, we believe each person's case is different and the cause of their pain may include musculoskeletal anomalies or psychological anxiety, as well as many other possible causes. No one should be put down for what they think is the cause of their pain. I have no desire to join your forum if the premise is that my pain/PGAD was due to my psychological profile and you are not open to the possibility of a pinched nerve.

Violet