Health Organization for Pudendal Education

Violet, do you not agree that the discrepancy between Dr. Robert and Dr. De Bisschop (an ex-associate of Dr. Bautrant) around the significance of nerve blocks is shocking?

I cringe when new patients are encouraged to go consult with PN-aware physicians. Based on the highly chimerical quality of the examination, It is easy to predict the inevitable outcome: surgery.

Violet,

I am likely the person you are referring to who was sent home because he did not believe I was entrapped. This was in 2006 and based solely on the results of my EMG.

Stephanies

Stephanie,

But you then saw Dr. Filler that diagnosed you with PNE and was more than willing to offer you surgery. Then Dr. Campbell thought Filler did not decompress fully the nerve and you had an extra surgery (based on what you posted on this forum).

It illustrates my point. It is random and unserious.

Yes, that is correct. I also had about 6 years virtually pain-free beginning about a year after surgery. I do believe that the various doctors who treat patients with pelvic pain each have their own way of diagnosing and their own criteria for suggesting treatments. This does not make them random and unserious, in my opinion. I understand your positions based on how you have explained your cure, however, I disagree with some of your points and the way in which you go about making them.

Stephanie,

You once said that you did not attribute your 6 years of remission to the 2 surgeries you had. Are you still standing by that statement?

Listen, I managed to help 6 people that contacted me on this forum get better. If they had all followed the standard advice to go see a PN physician, a practice that you endorse, who knows what would have happened to them. 2 of them indeed consulted with a PN physician that of course diagnosed them with possible PNE.

In regards to your statement of "how you have explained your cure", it was not that I just waited around and experienced a cure then tried to find a plausible explanation. I read about recent advances in chronic pain understanding and somatoform pain syndromes and what to do about it. Based on what I learned, I actively worked on it day after day for 2 years. I had longer and longer pain free periods in response to my work. It is not some speculation of what could have gotten me better.

Therefore reading gabriel81's experience with de Bisschop recommending surgery because the pudendal nerve block did not work when Dr. Robert says the exact opposite is yet another proof. It is just completely random. Again.

I think that dr de Bisschop is not making blocks with the same intent as Dr. Robert.

De B is making a general inflammation decreasing injection of corticosteroids which does not really serve as a diagnostic (he rather uses EMG and doppler)
Dr Robert is making a diagnostic injection with an anesthetic (+/- corticosteroids)

As for the "randomness", dissected cadavers have been found to randomly present severe entrapment with no pain reported during the life of the patient. Yet some patients are improved after surgery. It's the same kind of "randomness" as bulging discs and discectomy surgeries...

Some were badmouthing their colleagues telling me that they got it all wrong. They all seemed to have contempt for a certain PN doctor for his lack of proper surgical skills and finesse (he used to videotape his surgeries and made them available).

All the dr that perform the surgery (Dr. Robert, Bautrant, Kalfallah, ...) are neuro-surgeons or gynecologist surgeons except de Bisschop who is an angiologist.

chenonceau wrote: De B is making a general inflammation decreasing injection of corticosteroids which does not really serve as a diagnostic (he rather uses EMG and doppler)
Dr Robert is making a diagnostic injection with an anesthetic (+/- corticosteroids)

Dr. Robert is using a steroid/anesthetic combination just like Dr. de Bisschop (please refer to Dr. Robert's original PNE paper on this web site).

Let’s look at it logically. Both Dr. Robert and Dr. de Bisschop inject a mix of lidocaine and steroid.
Dr. Robert is looking for a short term relief of symptoms that confirms the appropriateness of surgery in that case. He also hopes that the steroid will heal the patient long term.
Dr. de Bisschop does the same but for him if you fail blocks both short term and long term you are a candidate for surgery.

Robert: Surgery is warranted IF (short term pain relief = YES) AND (long term pain relief = NO)
Bisschop: Surgery is warranted IF (short term pain relief = NO) AND (long term pain relief = NO)

They do exactly the same test but their algorithms have a different outcome. Scary.

chenonceau wrote:As for the "randomness", dissected cadavers have been found to randomly present severe entrapment with no pain reported during the life of the patient. Yet some patients are improved after surgery. It's the same kind of "randomness" as bulging discs and discectomy surgeries...

Yes, it is really scary. 10-20% of patients seem to be improved by surgery. Same results as sham knee surgeries. Placebo?
I went briefly on the massive Facebook PNE forum 6 months ago. I surveyed methodically all the posters that had PNE surgery and came to the same observation of around 15% PNE surgery success rate.

Then I looked at the cryoablation success rate and again you get approximately the same 15% success rate. 15% is textbook placebo response.

All the dr that perform the surgery (Dr. Robert, Bautrant, Kalfallah, ...) are neuro-surgeons or gynecologist surgeons except de Bisschop who is an angiologist.

I won't name names. It was not a French doctor. But let's say the neurosurgeons were not impressed by a colleague that was not a neurosurgeon.

If anyone is interested in reading my story as included in this forum since 2010 (although some of my PN history took place prior to then) I encourage you to click on my name and read my posts, my words and opinions, directly as I wrote them. If you have any questions you would like to ask me, you can feel free to do so in Case Updates or PM me directly as some members have already done.

Sincerely,
Stephanies

nonsequitur wrote:Dr. Robert is using a steroid/anesthetic combination just like Dr. de Bisschop (please refer to Dr. Robert's original PNE paper on this web site).

Let’s look at it logically. Both Dr. Robert and Dr. de Bisschop inject a mix of lidocaine and steroid.
Dr. Robert is looking for a short term relief of symptoms that confirms the appropriateness of surgery in that case. He also hopes that the steroid will heal the patient long term.
Dr. de Bisschop does the same but for him if you fail blocks both short term and long term you are a candidate for surgery.

Robert: Surgery is warranted IF (short term pain relief = YES) AND (long term pain relief = NO)
Bisschop: Surgery is warranted IF (short term pain relief = NO) AND (long term pain relief = NO)

They do exactly the same test but their algorithms have a different outcome. Scary.

I'm sorry but the facts are wrong (at least not true anymore). de B. is not injecting anesthetics, only steroids. (I had two in november '16). Nantes, on the other hand, is dropping steroids.

Yes, it is really scary. 10-20% of patients seem to be improved by surgery. Same results as sham knee surgeries. Placebo?
I went briefly on the massive Facebook PNE forum 6 months ago. I surveyed methodically all the posters that had PNE surgery and came to the same observation of around 15% PNE surgery success rate.

Then I looked at the cryoablation success rate and again you get approximately the same 15% success rate. 15% is textbook placebo response.

The problem is what do you tell to people that could be in these 15% ? Don't do it, it's placebo ? I think people would do anything to be cured...

I won't name names. It was not a French doctor. But let's say the neurosurgeons were not impressed by a colleague that was not a neurosurgeon.

Which seems pretty normal for doctors...

chenonceau wrote: I'm sorry but the facts are wrong (at least not true anymore). de B. is not injecting anesthetics, only steroids. (I had two in november '16). Nantes, on the other hand, is dropping steroids.

Chenonceau this is not correct. de Bisschop must use an anesthetic. All steroid nerve blocks contain an anesthetic if not for diagnostic, it is used to ease the pain.

You are saying that Nantes is not following their own "gold standard" Nantes criteria!!!??? Surprising? Not really. It shows again how sketchy that criteria is.

Here is the full Nantes criteria:

Decompression and Transposition of the Pudendal Nerve in Pudendal Neuralgia: A Randomized Controlled Trial and Long-Term Evaluation
Dr. Robert
Pain is unilateral or bilateral, is exacerbated in the seated position, and is not marked at night. Patients had to be between the ages of 18–70, in good general health, have a pain intensity of at least 7 on a 10 visual analogue scale (VAS) [7] a minimum score of 3 on the behavior scale (Table 1), a positive diagnostic response to an anesthetic block of the pudendal nerve defined as numbness in the usually painful area after nerve block with a temporary reduction in pain while seated, persistence of perineal pain in spite of at least two steroid blocks of the pudendal nerve at the ischial spine and in Alcock’s canal.

They want at least 2 steroid nerve blocks.

BTW, there is a massive contradiction in what de Bisschop writes. In 2009 he said:
http://www.doctissimo.fr/html/dossiers/ ... endale.htm

Des infiltrations sont envisagées en première intention et peuvent soulager le patient. Mais elles ne peuvent être répétées plus de deux ou trois fois sous peine d'altérer les tissus entourant le nerf. Si les infiltrations sont sans succès, la chirurgie sera nécessaire.

But in 2010 he wrote:
http://www.em-consulte.com/article/2859 ... [quote]Une infiltration tronculaire effectuée au niveau de la coulée infrapiriforme et de la fosse ischiorectale s’est révélée positive, confirmant l’étiologie tronculaire pudendale.[/quote]

In 2009, he said that a failed steroid nerve block makes you a candidate for surgery. But then the next year he said that people he performed surgery on, indeed responded positively to the steroid block before surgery.

So where does gabriel81 fit? According to the the 2009 criteria he should have pudendal surgery but then according to the 2010 criteria he should not because he did not respond to the steroid block!

Au pays de Descartes, ce n'est pas très cartésien.

The problem is what do you tell to people that could be in these 15% ? Don't do it, it's placebo ? I think people would do anything to be cured...

Do you agree with my number or do you agree with de Bisschop that claims he has a 89% success rate?

BTW, he had 89% success rate in 2009 with 43 patients while the last paper in 2012 shows 512 patients with the same 89% success rate. Don't tell me the success rate is the same between a small sample of 43 patients and 512 patients. For anyone that has taken a class in statistics, that is highly suspicious and shows that he never recomputed his statistics.

So if 89% success rate is correct go for surgery. Everybody should do it. Not as a last resort but as maybe a 2nd line of treatment after PT.
If 15% is closer to reality, that's another story.

You probably go on pudendalsite and also witness that even people that said they improved after surgery tend to relapse (despite the moderators that silence all dissident voices over there).
On the success section of pudendalhope, 2/3 of people that claimed that surgery cured them have relapsed. It does not contradict my statistics. Quite the opposite.