Health Organization for Pudendal Education

Vilet M wrote: 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

cpps-admin gave you a link to the full study. Unfortunately there is very little interest in anything that may weaken the favored dogma. nyt trying to backpedal and revise her judgment to line up with your beliefs speaks volumes.

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 ...

I can also google in 10 seconds anything or its opposite to substantiate any argument.
According to my physiatrist, pelvic adhesions can occur on reproductive organs but for the pudendal nerve it has to be an accident or surgery (he was not very impressed by my surgery report although he is not one of the self-proclaimed PNE experts).

Nonsequitur, you are very new to the forum. I would be interested to hear more about your story/surgery, etc.

Thanks for the offer but I will pass. The fact that you list and promote Possover and Beco is enough for me to stay away.

Your newsletter on PGAD is once again recommending pudendal nerve decompression surgery as the most effective treatment.

Pudendal Nerve Decompression Surgery

•Some patients have stated that this provided the most significant relief. Some patients report near
cures although there are rare cases of PNE surgery causing PGAD temporarily or for extended periods
of time.

Dr. Leiblum that you cite in your paper reached different conclusions regarding PGAD.

Conclusions.  Women who met all the criteria of PGAD were more likely than women who only met some of the criteria to report depression, anxiety, panic attacks, and certain obsessive-compulsive symptoms such as monitoring their physical sensations. It is hypothesized that for a subset of women, psychological factors, namely anxiety, reinforce exacerbate and maintain PGAD.
Leiblum S, Seehuus M, Goldmeier D, and Brown C. Psychological, medical, and pharmacological correlates of persistent genital arousal disorder. J Sex Med 2007;4:1358–1366.

PGAD as an anxiety disorder. An aspect that you completely neglect in your report.

You also mention:

Relaxation techniques including cognitive behavioral therapy

You do realize that "cognitive behavioral therapy" is not a relaxation technique.

Not everything is pudendal. That reductionist attitude is unscientific and dangerous.

(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.)

Could someone tell me more about this? Some background, I'm male and I've had most the symptoms for PGAD for about a month now, though no doctor could diagnose it. Was wondering is this paxil thing true i'm very eager to get rid of this shit? I'm in third year uni so the anxiety / stress could very well be a big factor.

nonsequitur wrote:
cpps-admin gave you a link to the full study.

Haven't had a chance to read the full study yet but obviously you have dissected every word of my article on PGAD.

nonsequitur wrote: The fact that you list and promote Possover and Beco is enough for me to stay away.

We don't promote or endorse anyone. I notice however that you are not staying away. You keep coming here.

nonsequitur wrote:Your newsletter on PGAD is once again recommending pudendal nerve decompression surgery as the most effective treatment.

Pudendal Nerve Decompression Surgery

•Some patients have stated that this provided the most significant relief. Some patients report near
cures although there are rare cases of PNE surgery causing PGAD temporarily or for extended periods
of time.

We don't recommend any specific treatment. Some patients have reported surgery to be effective. Notice the word "some." Are we not allowed to report that? Some doesn't mean everyone. You are very good at taking things out of context and twisting them.

nonsequitur wrote:Dr. Leiblum that you cite in your paper reached different conclusions regarding PGAD.

Conclusions.  Women who met all the criteria of PGAD were more likely than women who only met some of the criteria to report depression, anxiety, panic attacks, and certain obsessive-compulsive symptoms such as monitoring their physical sensations. It is hypothesized that for a subset of women, psychological factors, namely anxiety, reinforce exacerbate and maintain PGAD.
Leiblum S, Seehuus M, Goldmeier D, and Brown C. Psychological, medical, and pharmacological correlates of persistent genital arousal disorder. J Sex Med 2007;4:1358–1366.

You have taken Dr. Leiblum's quote out of context. She is comparing women who meet all of the criteria for PGAD to women who meet only some of them. Of course if you have more of the symptoms and meet all of the criteria you are going to have more anxiety than if you have fewer symptoms, but that doesn't mean anxiety is what caused the symptoms to occur in the first place.

So, she hypothesized there is a subset of women for whom psychological factors exacerbate and maintain PGAD. Well, then let me hypothesize there is a subset of women who are just fine psychologically who develop PGAD as the result of an injury to the pudendal nerve. A subset of women is not all women.

nonsequitur wrote:PGAD as an anxiety disorder. An aspect that you completely neglect in your report.

Not everything is pudendal. That reductionist attitude is unscientific and dangerous.

Well, Ezer, not everything is anxiety-caused either. That reductionist attitude is unscientific and dangerous. As stated in my article, pudendal neuropathy is one of the causes of PGAD. This is a website for people with pudendal neuropathy, not anxiety disorders. There are probably some websites/forums available for people with anxiety disorders if you want to go there. PGAD in my case had nothing to do with an anxiety disorder. I passed all of the psychological tests the psychiatrist's office gave me. They said it wasn't a psychological problem in my case. I am not in the subset of women who have PGAD due to an anxiety disorder -- if there is such a subset.

Violet

whatislife wrote:(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.)

Could someone tell me more about this? Some background, I'm male and I've had most the symptoms for PGAD for about a month now, though no doctor could diagnose it. Was wondering is this paxil thing true i'm very eager to get rid of this shit? I'm in third year uni so the anxiety / stress could very well be a big factor.

Paxil is an SSRI antidepressant. I did not try it but I used a related drug called lexapro. It took away about 75% of my symptoms of PGAD as well as some of the bladder symptoms I was having.

There are tricyclic antidepressants that may also be effective, such as elavil.

Drugs can be used off-label. For instance a drug may be primarily used for one disease but also be found to be effective for other medical conditions. SSRI's are known to have a dampening effect on sexual arousal which may be one of the reasons they are effective in treating PGAD in some people.

Violet

Persistent Genital Arousal in Women With Pelvic and Genital Pain
Leah Pink, RN, MN,1 Valérie Rancourt, MD, FRCPC,2 Allan Gordon, MD, FRCPC1

The presentation of persistent arousal symptoms was examined in each case. The mean age at which participants reported onset of the PGAD symptoms was 25.6 ± 16.15 years (range 4 to 57). In most no specific precipitating event could be identified, but there were some notable exceptions. Childhood sexual abuse was identified in 46.7% of the cases.

46.7% had an history of childhood sexual abuse. You can't dismiss numbers like that and diagnose almost all PGAD presentations with "pudendal nerve entrapment".
How efficacious would "pudendal nerve surgery" be for these patients?

You know that if these PGAD sufferers go to a PN surgeon they will get PNE surgery because they will be diagnosed as "entrapped" like the cadavers in the original study.

There are probably some websites/forums available for people with anxiety disorders if you want to go there.
PGAD in my case had nothing to do with an anxiety disorder.

People with deep wounds do not feel they have an "anxiety disorder". It is not that simple.

I passed all of the psychological tests the psychiatrist's office gave me.
They said it wasn't a psychological problem in my case.

Me neither. So those tests are meaningless.

Haven't had a chance to read the full study yet but obviously you have dissected every word of my article on PGAD.

I am not sure how the 2 are related.

nonsequitur wrote:46.7% had an history of childhood sexual abuse. You can't dismiss numbers like that and diagnose almost all PGAD presentations with "pudendal nerve entrapment".

Who ever said almost all PGAD presentations have pudendal nerve entrapment?

nonsequitur wrote:You know that if these PGAD sufferers go to a PN surgeon they will get PNE surgery because they will be diagnosed as "entrapped" like the cadavers in the original study.

Who ever said anyone with PGAD should go straight to a PNE surgeon and have surgery?

nonsequitur wrote:People with deep wounds do not feel they have an "anxiety disorder". It is not that simple.

But you said PGAD is an anxiety disorder. If people who have been sexually abused have deep wounds but as you say, they don't think they have an anxiety disorder, wouldn't it be insulting to tell them they have an anxiety disorder?

What about the 53% of women who had no history of sexual abuse or deep emotional wounds but have PGAD? Wouldn't it be equally as insulting to tell them their PGAD is due to an anxiety disorder? And wouldn't it be dangerous to tell all women with PGAD they have an anxiety disorder when it could possibly be something else such as PNE?

violet m wrote:Haven't had a chance to read the full study yet but obviously you have dissected every word of my article on PGAD.

nonsequitur wrote:I am not sure how the 2 are related.

I will spell it out for you how the 2 are related. You said that I dissected every word of the study. So I am just pointing out that it appears you dissected every word of my article. Is that OK?

But you said PGAD is an anxiety disorder. If people who have been sexually abused have deep wounds but as you say, they don't think they have an anxiety disorder, wouldn't it be insulting to tell them they have an anxiety disorder?

What about the 53% of women who had no history of sexual abuse or deep emotional wounds but have PGAD? Wouldn't it be equally as insulting to tell them their PGAD is due to an anxiety disorder? And wouldn't it be dangerous to tell all women with PGAD they have an anxiety disorder when it could possibly be something else such as PNE?

Wow! Errr. Yeah, it makes total sense...

nonsequitur wrote:Yeah, it makes total sense...

What? It makes total sense to insult people by telling them their PGAD is an anxiety disorder? Why would you want to insult people? Isn't that pretty sick? I don't get it.....

Do you think it is way less insulting and more glamorous to be diagnosed with PNE?

Do you think it is better to be diagnosed with PNE (which is often simply a diagnosis of exclusion, PNE is way over-diagnosed according to the article nyt posted) and slowly going down the PNE surgery route (after a few unsuccessful nerve blocks and expensive PT) than being diagnosed with an insulting "somatoform pain disorder" which may be the proper diagnostic for a probably not insignificant sub-group of PGAD sufferers?

Why is it insulting?

Somatoform pain disorders are REAL. I suffered from it. I was not insulted.

https://www.nlm.nih.gov/medlineplus/enc ... 000922.htm

Somatoform Pain Disorder

Patients with somatoform pain disorder seem to experience painful sensations in a way that increases their pain level. Pain and worry create a cycle that is hard to break.

People who have a history of physical or sexual abuse are more likely to have this disorder. However, not every person with somatoform pain disorder has a history of abuse.

As researchers learn more about the connections between the brain and body, there is more evidence that emotional well-being affects the way in which pain is perceived.

Dr. Leiblum S. that you quote in your pamphlet, found indeed a high incidence of sexual abuse in PGAD sufferers just like the Canadian study I posted above. Do you think it is pure coincidence?

Psychological, medical, and pharmacological correlates of persistent genital arousal disorder.
Leiblum S1, Seehuus M, Goldmeier D, Brown C.
Both groups reported high rates of childhood and adult sexual abuse, although the PGA women reported a higher prevalence of sexual victimization.

nonsequitur wrote:Do you think it is way less insulting and more glamorous to be diagnosed with PNE?

Do you think it is better to be diagnosed with PNE (which is often simply a diagnosis of exclusion, PNE is way over-diagnosed according to the article nyt posted) and slowly going down the PNE surgery route (after a few unsuccessful nerve blocks and expensive PT) than being diagnosed with an insulting "somatoform pain disorder" which may be the proper diagnostic for a probably not insignificant sub-group of PGAD sufferers?

Why is it insulting?

Somatoform pain disorders are REAL. I suffered from it. I was not insulted.

Somatoforrm pain disorder is a pain disorder. But you said people with PGAD have an anxiety disorder. An anxiety disorder is a mental illness.
http://www.webmd.com/anxiety-panic/guid ... -disorders

Part of my job is working with patients who have anxiety disorders so when you say "anxiety disorder" I think of people who cannot function normally in society because they are mentally ill. There is a difference between that and a somatoform pain disorder.

I think most people who don't have a mental illness would be insulted by being told they are mentally ill. I don't want to be classified as mentally ill and I've talked to other PGAD sufferers who do not want to be classified as mentally ill either. I think it's easy to understand why it would be insulting.

The problem is that you are putting everyone into the same basket of mental illness by saying PGAD is an anxiety disorder. You are doing a disservice to a group of patients who have a nerve injury who may incorrectly be sent to a psychiatrist for PGAD (as I was) when what they really need is treatment for PNE (like I did).

Can we agree that some people have somatoform pain disorders while others truly have PNE or pudendal neuralgia from other causes such as injury due to childbirth or pelvic surgery, etc? I could certainly agree with that. But to say PGAD patients are mentally ill is taking it too far.

Violet