International Continence Society conference

[robertpagen]

http://webcasts.prous.com/ICSIUGA2010/h ... &p=7,13067#

2010 conference, so it goes without saying that there are different, fair perspectives

Be well

[webslave]

Oh boy, that is one confused set of presentations! The informed observer will note the level of (often unspoken) disagreement at this conference. My first observation is that this is a bit of a PNE conference, featuring researchers and doctors well out of the mainstream, most of whom I have never heard of before, with unusual theories to match. For example, Dr Jerome Weiss (whom I do know) does not hold back in his lecture, going off on some weird tangent about Morton's Foot! Linking that condition to pelvic pain is a completely fringe theory with no published support, so take with a large pinch of salt! The Belgian doc (Dr Beco, a PNE surgeon) with his "pee pee, poo poo, sex" symptomatology oversimplification had me squirming with irritation. I could go on ....

Bottom line: I urge readers who are not knowledgeable in the area of pelvic pain NOT to view these presentations, most of which are speculative and not supported by published research, unless they enjoy worrying about this topic more than they have to.

I did notice this slide from the Siroky lecture though, and that's the one lecture I found somewhat useful (he also references UPOINT):



{I moved this thread, which does not represent the viewpoint of this forum as is not considered an advance on current knowledge, from the Research News to the General Discussion forum}

[superuse]

Seems to be several of the 7 surgeons who do most of the 600 or so PNE type surgeries per year worldwide. Beco seems to do a variant that is unique and limited to women. (all his studies seem to have them.) He seems to have done many, with his published results more thorough than the (few) French publications. I read one that studied over 200 female surgeries, and concluded a 75%+ much improved/cured rate after 6 mo. This just seems unrealistic, no matter how rigorous his studies seem. (He is only one researcher)

This is the same problem the (sparse) French publications of 2000-2003, had (after a longer evaluation), despite Beco seemingly being more thorough. An unrealistic cure/ improved rate compared to those arriving back and reporting on pelvic pain forums.

Note he does not use the French "Nantes" protocol and forgoes anal emg, pnmlt, or the 3 ($12000) nerve blocks as tests for surgery. He also does not view pain on sitting as indicative of PNE, his most specific and sensitive tests being the skinroll test around the butt bones, pin prick and pain on nerve palpation. These, and the presence of anal or urinary incontinence seem to be the major indicators to him. (the majority reporting on this forum lack this.) In his paper he calculates that PNE is "rare". I'm not so sure how he calculates it but if you are experiencing perineal, genital, gluteal pain and/or urinary -anal incontinence (pee pee -poo poo) there is about a 20% chance you have PNE, or something curable with the surgery.

Dr. Anderson is right about this being highly experimental stuff. There are 500,000 heart bypasses per year done in the U.S. alone. I only mention Beco as he is the only one I have seen publishing anything with as many participants and as much rigor. Whether it is peer reviewed I don't know. He is only one of few researchers.

Of course this compares very unfavorably with Dr. X's 94% (totally undocumented) cure rate. This Dr. claims a cure rate that even one particular surgery site mod found outrageous, along with his fees, along with his penchant to keep operating and operating...

One recent post--- Note the highlighted stuff. I'm assuming the 300 surgeries he has performed in 10 years or so is on at least 100 patients.

by xxxx» Thu ccccc, 2010 4:34 am

It has been a while since I posted but thought some would be interested in my wife's fourth surgery in 12 months. A quick history: Suffering 2.5 years, diagnosed 1.5 years ago. First surgery right piriformus muscle - no success. Second surgery was bi-lateral piriformus and obertrator internus - six weeks post surgery everything looked good then all hell broke loose. Third surgery - nerve shifted and was laying on one of the sacral ligaments. Ligaments cut but no relief. We stayed on Dr. X to determine why and he performed four injections back at the original piriformus surgical location and for the first time ever she got significant pain relief though short term. We all agreed to one final attempt. This time she has seen significant pain relief that is holding for two weeks. She does have significant sciatic nerve pain on one leg which is worse than the PN pain. On steroids for inflammation and hoping it calms down. Having been down this road before we are not declaring success but a little optimistic. Bottom line for all suffers is "don't give up" and stay on the doctors butt to find the entrapment. Dr. X told us that in 300 plus PN surgeries he has never had to go as far up the muscle as he did with wife**. Will keep you posted.xxxxx

How in heck can you have 4 surgeries in 12 mo (5?) when there is a 6 mo minimum evaluation time? Folks on these pudendal neuralgia/PNE sites could probably spend time discussing the wisdom of stuff like this, along with the necessity of (usually useless, risky and expensive) nerve shots and tonsa other expensive and invasive stuff. Unfortunately a chunk of their recent research efforts seem to be focused on bombarding the review section of Wise's book HITP on Amazon with reviews mentioning (irrelevant) suicides etc to see how far they can go without getting stuff removed. Once the Amazon-Wise conspiracy is defeated they reason, the world will be safe for democracy. (and surgeons charging $100000 and doing 5 pn/pne piriformis or whatever surgeries in 12 months)

Led by our "crazy" man "charlie", they seem not to be deterred

Good luck
--jjf

[webslave]

It's an astonishing situation! Given the rarity of the condition (and I do believe it exists, but it is very rare), there should be one forum on the internet for it, with about 100 members, and maybe a couple of hundred posts. Instead we have numerous forums, thousands of members and posts!

A possible explanation is this: people want simple answers to pelvic pain. They want to be told that all they need is an operation and Hey Presto! they'll be well again. This is the same reason men like to believe that their chronic prostatitis / chronic pelvic pain syndrome or IC is just an infection, because if they could only find the right antibiotic, they'd be cured!

So that's why many people with pelvic pain, who need to embark on the sometimes difficult and winding road back to health, are rushing off instead to surgery sites — laparoscopic prostate surgery, nerve decompression surgery, multiple intraprostatic injections, etc. It's such a waste of time and money.

[superuse]

I think after going through the usual clueless urologist and other DR. rolodex, the first thing one may hit on who can remotely describe your pelvic pain symptoms will get attention. Some will hit on a prostate removal guy, some injections, (including the unfortunates going to China for Dr. Song) some other surgeries.

We seem to have had one guy recently who looked pretty determined to head to eastern europe or such to have his prostate removed based on one weak paper on 11 subjects. The main thing is pain pain on sitting, the need to work and desperation. I can understand those that are severe or bedridden , but sometimes its people with milder symptoms who have their tennis, workout or soccer games impaired who go for such extreme measures. Thats kinda puzzling, although I know the location of the discomfort can be anxiety producing and aggravating.

Anyway, here is a paper from University of Michigan on causal factors of pelvic floor dysfunction in females, part of it relating to its links to exercise.

http://pelvicrehab.com/assets/DeLanceyC ... orsPFD.pdf

Lets see, if we do a calculation, if there are 300,000 females/yr (U.S?) having surgical intervention for pelvic floor problems, (prolapse, urinary retention, bladder or bowel probs etc) and about 400/yr worldwide having PNE surgery, (to mostly neutral/bad/slight positive results) that makes it about 0.1-0.2 % of pelvic pain operations amongst the most common (2/3) group for these symptoms, women.

I doubt if the vast majority of the docs doing the 300,000 operations/yr have heard of pne, or of the 7 or so docs regularly doing most of the procedures worldwide.

Good luck
--jjf