Health Organization for Pudendal Education

I should warn you - dr Jordan is an excellent dr (he is currently my dr) - but he does not support any type of pne surgery at this time.

I tried to pm you new mom but im not sure if it went thru. For some reason my pm does not seem to be working right.

Merrie

NewMom, I sent you PM too. Not sure if it went through.

Lernica

merrie wrote:I should warn you - dr Jordan is an excellent dr (he is currently my dr) - but he does not support any type of pne surgery at this time.

I agree. I saw him also and his exact words were "surgery helps 50% of the patients, do you think it is worth the risk". His Botox injections did not help me (actually, it was a severe set back that lasted for months).

Thanks for the tips about Dr. Jordan. I'll keep you posted on what he says after my appt. I'm not opposed to surgery if there's even a chance it will help "cure" me. I just want to do as much as I possibly can to treat my PN, but it's all so confusing since my doctors often contradict each other!

Oh and Lernica, I just sent you a pm too, but I don't know if it went through either!

Have you seen or heard about the book written by Vanessa Frank. She was cured of PN with non surgical treament. I do know of one lady who had severe Pn for two years after a vaginal probe ultrasound. She became 100% better a little over two years later. I also know of another male patient who was cured from physiotherapy here in Australia. so I would definitely say yes, people have been cured from non surgical treatment. These people have moved on with their lives and have expressed that they do not want to participate in the forums as it's a time of their life they'd rather forget. I wish them all the best but we don't know if PN will strike them again in the future. I sincerely hope it doesn't and I wish these people the very best in life.

I purchased Vanessa Frank's book and found it extremely valuable. I heard recently from Dr. Bautrant that only 1 in 10 patients will progress to surgery. it used to be 1 in 3. Many people are cured in time with physiotherapy and other conservative treatments without surgery but it can take years. Only severe cases where other treatments have failed will be considered for surgery. Best candidates for surgery are those who: are under 50 yrs of age, PN symptoms are less than 7 years, Not depressed and have a good family support network in place.

Here is the link to Vanessa Frank's book. My phyiotherapist is so impressed she has ordered her own copy.

http://www.pudendal-neuralgia-book.com/page1

catherine a wrote:. Many people are cured in time with physiotherapy and other conservative treatments without surgery but it can take years.

I cannot find a single study that can show PT is an effective long term treatment for pelvic pain. I agree that people should try it and people should definitely not rush into surgery. Personally I have had the same experience as Ezer and have never known anyone to be cured by myofascial PT. I am sure there are some successes with it but they seem to be anomalies rather than the norm. I appreciate that PT could be effective after a nerve decompression or other treatment.

HerMajesty wrote:I have not heard any credible accounts of a nerve entrapped in scar tissue being freed non-surgically.

Dr. Andrew in Cornwall is having some early success with exactly that, using the protocol he's developed... http://www.pudendalhope.info/forum/view ... f=17&t=597
One could argue that his isn't a "credible account", as it's just him claiming these stats and there's not yet any published, peer-reviewed studies, but I believe that's his next step (in his defence, it does take time & money to conduct such a study).

And actually, based on the same criteria, there are still no "credible accounts" re. Potter's efficacy for that matter. I went to see her close to a year ago, then spread the word on the old board. Obviously many people have been to see her since, and although just about everyone describes a similar positive experience as the one I had, there's still no concrete (ie. published) proof that her imaging is on the money as far as diagnosing this condition (aside from a smattering of anecdotal surgical confirmations).

The sad fact remains that, for the moment at least, there isn't an overabundance of credible accounts about any aspect of this condition, so we're unfortunately forced to rely on anecdotal accounts for the most part (hence the need for this board!).

Pelvis Stressly wrote:
And actually, based on the same criteria, there are still no "credible accounts" re. Potter's efficacy for that matter. I went to see her close to a year ago, then spread the word on the old board. Obviously many people have been to see her since, and although just about everyone describes a similar positive experience as the one I had, there's still no concrete (ie. published) proof that her imaging is on the money as far as diagnosing this condition (aside from a smattering of anecdotal surgical confirmations).

The sad fact remains that, for the moment at least, there isn't an overabundance of credible accounts about any aspect of this condition, so we're unfortunately forced to rely on anecdotal accounts for the most part (hence the need for this board!).

I agree. I also share your skepticism about the Potter 3T MRI. I can only find one solitary randomized controlled study showing validity for any treatment for this condition - The Nantes study on TG surgery and even that was not a particularly impressive study. As patients with this condition we are almost forced to take a gamble on treatment.