Publication Abstract - A Must Read!

[Alan1646]

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.....

Perhaps it would be more appropriate to tell them that there was a significant chance that they were suffering from an anxiety disorder. There is nothing to be ashamed of with regard to suffering from an anxiety disorder, but there is widespread prejudice against people with mental illnesses and so many people will react angrily to the suggestion that they have a psychological condition. It is no more an insult to suggest an anxiety disorder than it is to suggest nerve damage from a fall. Personally, ( although I don't have PGAD) I felt optimistic and even elated when it was suggested that the pain from my diagnosed PN could be caused by psychological factors, because that implied the possibility of a total cure.

[nonsequitur]

Violet,

Anxiety disorders and pain disorders are known comorbidities. I have seen professionals use freely one or the other (albeit erroneously I agree).
The comorbidity is very visible on PN fora and anxiety often predates the onset of pain. It is also reported that the combination of anxiety and a small physical incident triggers somatoform pain disorders.

WebMD defines Somatoform disorders as "mental illnesses that cause bodily symptoms, including pain". So you see depending on the source, both are mental illnesses.
The ADAA writes under Chronic Pain: "Pain can be a common symptom — and sometimes a good indicator — of an anxiety disorder"

The DSM-IV nomenclature is highly controversial among practitioners.

There are so many names used with some tiny inconsequential variations which is irrelevant when it comes to what treatment should apply:

- Historically referred to as hysteria or Briquet's syndrome
- Somatization Disorder
- Somatic dissociation
- Psychosomatic disorders
- Mindbody syndromes

I was once on a forum where a bunch of younger people were comparing the onset of their pain. What triggered their pelvic pain was often a major and painful breakup with a partner or a deep sense of betrayal/abandonment after a one night stand. That has to be psychosomatic. Some people reported the same on this forum but insisted on a PN explanation.

My issue with the PNE diagnostic is the inexorability of what comes next. If you have pelvic pain (no matter what the source is) your muscles will automatically contract to protect the painful area. It is unconscious. You cannot control it. PFD of course happens next even if you suffer from a somatoform/mindbody disorder.

Once PFD is diagnosed (mostly by the muscle tone or the asymmetricality of the pelvic floor -my case) and you inevitably fail to improve with PT or nerve blocks, you are one step away from being offered PNE surgery. I was offered PNE surgery after mere palpation of my pelvic muscles through my clothes. I did not even need to get undressed.

[stephanies]

NS,

It would be interesting to know the timeframe during which you saw PN related doctors for treatment. I personally saw PN doctors and other pelvic related specialists from 2005-2007 and then again in 2014-2015. In 2005-2007, my experience was similar to what you describe. The doctors I saw wanted nerve blocks, which were unsuccessful long term, then the next option was surgery. Some suggested Botox or PT, but I think the concept of pelvic floor PT was quite new then so there was not much quality or consistency in the practice of it. The major practitioners are different doctors now than then, at least in the U.S., but I have seen two of them in the past 2 years. It is very clear to me their emphasis is on non-surgical measures. Physical therapy, Botox, PRF, cryoablation, etc. Surgery of any kind (with the exception of a brief discussion I initiated about neurostimulation with one) did not even come up, even in one appointment that was 3 hours long. I also posted elsewhere on the forum that I believe that the pelvic PT field has come light years from where it was when I first saw a PT in 2005. There is so much more knowledge available, both nationally by some of the "big players" in pelvic PT as well as locally. I have hope that for some people PT will be able to restore their quality of life, though I have not had that experience yet, I remain hopeful for me too. I suspect that some doctors like Filler or Dellon, who are not primarily PN doctors, but do their own nerve surgeries might be different, but as far as my experience with the true PN doctors you refer to, surgery is not being offered lightly or quickly, if at all, like it was a decade or so ago after little diagnostic evaluation. My last thought is, in relation to PN pain and PGAD, is that all of us are different in mind and body and what causes this pain or discomfort in each of us is different. There is one symptom I only have during the very middle of my monthly cycle, each and every month. The logical conclusion is that this is caused, directly or indirectly, by hormonal changes. The symptom comes for a couple days and is quite annoying, then the disappears for a month. Just my 2 cents.

Stephanies

[nonsequitur]

Stephanie,

I won't name names but I was offered to be referred very quickly to Dr. Bautrant for surgery by one doctor in 2004. Then I was offered a referral to Dr. Robert by another doctor (during my very 1st consultation!).

I can't tell you if Drs. Bautrant or Robert would have performed PNE surgery on me of course if I had accepted a referral back then.

Then my surgery was in 2011. He is a well known PNE surgeon. I had to pay for surgery before I even consulted with him. I saw him only once before surgery that was 3 days later. No diagnostic nerve block.

The last time I had pelvic floor PT was in 2012. Same old trigger point routine.

I am a bit surprised. On the FB forum (that I don't frequent anymore so who knows), there was a very long list of people that had surgery with Dr. Hibner and it seemed very easy to obtain. None were cured (except for one person that seemed a bit histrionic to me so I have my suspicion) yet they all had great things to say about him.

I am not arguing that PGAD is a psychosomatic syndrome only. It is simply not understood very well. Dr. Leiblum that was proactive and the main investigator passed away in 2010 therefore very little has been done. She mentions several causes in her publications. PNE is not one of them also she does mention the pudendal nerve and PNE in her book but just as an FYI.

[stephanies]

I can only share my personal experiences. I have never participated in a pudendal Facebook forum, so I am not familiar with the experiences of the members there.

Stephanies

[Violet M]

Stephanie, I thought you had gone to Bautrant about 10 years ago and he sent you home without doing surgery even way back then. Of course he had quite a bit more experience with PN than the US doctors at the time so maybe that's why. I agree with you that whether or not you end up having surgery may depend on the physician you go. It's like that with many illnesses and injuries though. Doctors often don't agree on the treatment.

NS, I am sure you are much more of an expert on pain disorders than I am since that is your diagnosis.
The Harvard Newsletter calls somatoform disorder a medical condition. http://www.drugs.com/health-guide/somat ... order.html It also states that there are no laboratory tests to determine if that is the diagnosis.
I did notice this statement on the WebMD site that you mentioned:

Doctors need to perform many tests to rule out other possible causes before they diagnose a somatoform disorder.

It sounds like somatoform disorder is a diagnosis of exclusion. In other words, you should not jump to the conclusion that pelvic pain is a somatoform disorder. When people come on this form and express some anxiety over something, you can't just jump to the conclusion that they have a somatoform disorder any more than you can jump to the conclusion that they have pudendal neuralgia or PNE.

Violet

[Violet M]

I am not arguing that PGAD is a psychosomatic syndrome only.

Well then I think we can agree on that.

[nonsequitur]

It was my physiatrist and pain doctor that told me about somatoform pain disorders. He was so afraid to make me upset at first, it is only when I got to know him that he mentioned the possibility to me. And again he was almost apologetic. He advised me to consider some of the unexplained variation in pain I reported to him (variation in pain with barometric pressure/weather which he thought was just bizarre). At that point I had nothing to loose. Why not?

He gave me a paper he wrote on the subject.

It really has to come from within. Nobody can convince you that you have a somatoform pain disorder if you are not receptive. It can be perceived as really upsetting I reckon.

My physiatrist told me that many of his patients were suffering from somatic pain disorders but the most he could do for them was to aggressively treat their pain often with narcotics.

[stephanies]

You are correct, Violet. Dr. Bautrant decided not to do surgery in 2006 because, based on my EMG results, he felt my nerve was not entrapped. I was scheduled for testing one day, nerve block the next day (I think), with surgical time reserved for 2 days later. He told me that it was rare that the EMG was normal in patients who came to see him for PN pain, so most patients followed the EMG with the nerve block then surgery, all in a couple days. At that time, Bautrant was the only one doing the EMG testing and he felt that it was the gold standard for determining a need for surgery. I left France, still in pain with no idea what to do next. This was not Dr. Bautrant's fault in any way, there just wasn't much available besides blocks and surgery and maybe Botox, which was fairly new. Desperate, I had surgery anyway 7 months later with Filler, who based his surgery completely on my MRN. The doctors just didn't have anything else to offer their patients then. In my recent appointments, the doctors have not discussed surgical intervention and have provided suggestions regarding lifestyle changes, medications, PT, PRF, cryoablation, neurostimulation, even potential platlet rich plasma injections that might be available in a few years. Surgery, in my opinion, seems to be a last resort if all criteria are met and many other treatments tried and failed. Based on discussions with Dr. Conway, I suspect Bautrant has a different protocol now too. As I considered a re-do after Filler in early 2007, I was in communication via email with Dr. Hibner and he told me to come to Phoenix and meet with him one day and he would do surgery the next. I did not go to Phoenix then, but in 2014 when I consulted with him we discussed how much things have changed with PN treatment options. Dr. Hibner himself is always researching and trying new things to help his pateints avoid surgery or to help them post-op. I hope this clarifies my position, which is simply that the PN doctors I have seen these last couple of years (and likely even Dr. Bautrant, who I have not seen since 2006) want to use surgery only if nothing else works.

Sincerely,
Stephanies

[nonsequitur]

Stephanie,

Are you sure that they are not offering you a re-do surgery not because they are suddenly more conservative and savvy, but instead because you already had 2 prior surgeries that were not successful?

No matter what the cause of your pain, your pelvic floor will be spasming. Therefore the Doppler, PNMLT etc. will register positive. The diagnostic nerve blocks are very unreliable because based on subjective patient feedback.

From what I heard, it is quite straightforward to have surgery with Dr. Robert in Nantes or Mr. Wong in Bristol.
I am not sure about Dr. Bautrant if he modified his diagnosis protocol since he split with Dr. De Bisschop that runs his own team now.

Alan,

The reaction of anger is very puzzling on any forum. That PNE diagnostic is a prized item displayed proudly in the signature. Once diagnosed with PNE you simply cannot think out of the box anymore and go from one doctor to the next trying to find answers when they simply don't exist.
The facebook forum is the worst. When Sarno's name appears you have literally hundreds of angry replies that pop up, wishing PNE on Sarno -yet most of those posters show massive appearance of having psychosomatic pain.

Violet,

Dr. Echenberg that you interviewed is all into the mindbody connection:

http://www.instituteforwomeninpain.com/ ... connection

I wonder what he REALLY believes.