Health Organization for Pudendal Education

The pudendal surgery studies are rife with statistical problems anyway. With the exception of the Nantes study, none of them even have a control group (and even then the Nantes one did not track the control for the entire period). Furthermore, the studies were coordinated by the surgeons themselves, which could lead to all kinds of potential biases. I understand some patients were even excluded from the final samples in one study due to being "depressed". A placebo-controlled, randomized and blinded study like the article Alan linked to would be the ideal, but I realize that's difficult, so at the very least, a controlled study that is coordinated by an independent third party would be more credible. Why aren't good quality studies being published?

I think it would be impossible to do a randomized blinded controlled study of patients with pudendal neuralgia who did or did not have surgery. The suffering is so severe that I think the patients in the worst pain might refuse to be put in a particular research group. I think the best you could come up with for this kind of study would be a good sized number of consecutive surgeries so you weren't picking and choosing the ones with the best outcomes for your study. One reason studies aren't being done as much as would be nice is that it's expensive and time consuming to run a good study. Even with surgeries as common as a hysterectomy, my physician told me there weren't any studies that concluded definitively which approach was best for a hysterectomy. There just haven't been enough done.

I don't think you can compare hernia surgery to surgery on a nerve. Nerves take a long time to heal. I knew a woman who had a cancerous tumor removed from her leg. It took 12 years to get feeling back in that area. I don't think you can conclude that if it takes several years for the pain of PN to subside after PNE surgery that it was the placebo effect. In addition to dealing with the fact that nerves heal slowly, many PN patients have the accompanying residual effect of their pelvic floor becoming dysfunctional due to the pain and it may take a considerable amount of time to retrain those muscles to relax. At least that's how it was for me. No amount of PT before surgery was successful, but once the pain started to subside a bit after surgery, I found PT very helpful in helping me to get the rest of the pelvis back into a functional state.


Violet

I think the best you could come up with for this kind of study would be a good sized number of consecutive surgeries so you weren't picking and choosing the ones with the best outcomes for your study.

That doesn't carry any statistical value. To prove a treatment has value, it must be measured against a control group at the very least.

Nerves take a long time to heal. I knew a woman who had a cancerous tumor removed from her leg. It took 12 years to get feeling back in that area. I don't think you can conclude that if it takes several years for the pain of PN to subside after PNE surgery that it was the placebo effect

But if that's true, why did the Nantes cohort get worse over time? If you look at that study, after one year it showed 71.4% of the surgery group were improved or cured. If you go four years out, only 50% were improved or cured. The data shows the opposite of what you're arguing. What's scarier is that after one year, the control group had 13.3% improvement- even if you assume that not a single person improved in the control after that first year (admittedly a shaky premise, but I'll throw them a bone), that means, at best, the surgery improves or cures only 36.7% of patients long term vs. the control. Not good...

I'm a professional statistician as well as a pelvic pain sufferer- I'm just saying I'd like to see some solid studies that treatments actually work. "Too expensive" is not a valid excuse when obscene amounts are being charged to patients.

Violet M wrote: One reason studies aren't being done as much as would be nice is that it's expensive and time consuming to run a good study.

Violet

I agree with Jason that when you consider the amounts charged for treatments, studies would be affordable. There is another possible reason that studies aren't being done for a range of treatments:
there could be a fear that such studies would show that the treatments were not effective for the vast majority of patients.

Jason32 wrote:To prove a treatment has value, it must be measured against a control group at the very least.

So the definition of a control group is as follows:

1. A group of subjects or conditions that is matched as closely as possible with an experimental group, but is not exposed to any experimental treatment. The results are then compared to determine the changes that may occur due to the experimental treatment.

http://www.businessdictionary.com/defin ... group.html

So, who would you get to be in your control group? Generally people who opt for PNE surgery are in serious pelvic pain so you would have to find a group of patients in serious pelvic pain who would agree to receiving absolutely no treatment for your control group. Who are you going to get who will agree to do that?

Jason32 wrote: But if that's true, why did the Nantes cohort get worse over time? If you look at that study, after one year it showed 71.4% of the surgery group were improved or cured. If you go four years out, only 50% were improved or cured. The data shows the opposite of what you're arguing. What's scarier is that after one year, the control group had 13.3% improvement- even if you assume that not a single person improved in the control after that first year (admittedly a shaky premise, but I'll throw them a bone), that means, at best, the surgery improves or cures only 36.7% of patients long term vs. the control. Not good...

Which study are you referring to, Jason. Can you link to it?

Violet

Alan1646 wrote: I agree with Jason that when you consider the amounts charged for treatments, studies would be affordable. There is another possible reason that studies aren't being done for a range of treatments:
there could be a fear that such studies would show that the treatments were not effective for the vast majority of patients.

Most of the doctors I know have way more business than they can handle. They don't have to treat PN patients to stay in business so I can't think of why they would be scared of what a study on PN patients, a tiny segment of the population, would show. It would not be cost effective to spend a lot of effort on a study for a tiny group of patients.

Violet M wrote:
Which study are you referring to, Jason. Can you link to it?

https://www.ncbi.nlm.nih.gov/pubmed/15716208

Violet M wrote:
So, who would you get to be in your control group? Generally people who opt for PNE surgery are in serious pelvic pain so you would have to find a group of patients in serious pelvic pain who would agree to receiving absolutely no treatment for your control group. Who are you going to get who will agree to do that?

One more post...

This is the standard in medical research for drugs and procedures for other painful conditions. Why is it so different for PNE? It's the only way something can be proven to be effective. By the way, the control group is controlling for surgery, so other treatments may not necessarily be excluded. You may argue that putting someone in a control group is cruel but sending people into an unproven treatment is also potentially bad.

Without a control, for example, I could easily produce a study that shows antibiotics are effective for colds. I have 100 patients with a cold, I give them antibiotics then check on them in four weeks and find 99% are cured. Having a control group would tell a different story. I might even get slightly better results than the control if I tell the antibiotic group that the pills will make them better or ask for the results personally (social desirability bias).

My wife was actually part of a control group for a study years ago- after the study ended, control participants were treated.

Alan1646 wrote:I don't know what the success rate is for PNE surgery at Bristol. Now that the doctors there have performed a number of operations it would be great if they could look through their records and publish the stats. In the meantime, all we have to go on is what we can glean from boards such as this one. I've searched for people who have posted that they had surgery at Bristol and this is what I've found. If I've left any out, please correct me.
Failed :
Adg1403
Chillijava
Lenny33
Lex1
Positivepoppy
andypablo
Violet recently posted an account by Kassie , who stated that she was doing well three years after surgery at Bristol, although she does seem to say that she is still taking anti-depressants-whether for pain or not is unspecified. This unscientific sample includes people who are still in bad pain after surgery and who have been unable to work because of it. Perhaps there are large numbers who have been cured but who never post here-nor anywhere else. So, all we have to go on is one success out of seven, or 14% of those we know about here.

I think chillijava is also on a healthunlocked pelvic pain forum and has had her second surgery in Nantes.

Hi Folks, I haven't posted in a along time expect for the question I asked yesterday.. Ive been quickly skimming this thread today and it sounds as I suspected from my research back when I was on here often, that there are few true success stories for PN Surgery, but I'm no expert.

I developed urinary frequency, years back, then after much research and unnecessary treatment, I developed mild sit bone pain.... later after an unneeded nerve re-section surgery, my pain became anal the most painful .

I didn't do anything to start this whole syndrome, Im not a bike-rider or weightlifter, I had no serious falls, accidents or mesh surgeries etc.
What I did do however is research pelvic pain to death, as soon as my first annoying symptoms began in 2006. (exactly a year after my dad passed away). My children were young then (youngest was 6 ) so I was determined to read and do all I could to get well. Very few doctors knew much about pelvic pain, Some said I had IC , others said Pelvic Floor Dysfunction ( which I believed was true).. After a few years I got mild sit bone pain. So in 2009 I flew out west to see 2 of the most well-know PTs in the USA. Both said I had neither IC nor PN! They advised sympathetic blocks to calm my overactive CNS.... (BTW I also had trigger pt injections done by Dr Weiss while out there. By the end of my trip my sit bone pain was gone, tho the urinary issues (remained).. little did I know that they were really quite minor..
When I got home I had a few sympathetic blocks but I noted my sit bone pain returning within a month or 2... and stopped the blocks.. I could go on and tell the rest of my story but its posted on this several times . By 2012 after way too much research, study and treatments ,I had anal pain... the worst pain of all for me.
I met a savvy PT in 2014 who not only helped get rid of my trigger points, but also assured me by her experience with PN patients, that I did not have it! That did wonders for me morale wise.. I became active, dined out, and went to many events requiring sitting.. ( I knelt on cushions , I never sat)
the point Im trying to make is that I believe I caused or at least worsened my pain by worrying and obsessing about it non- stop. I never had the patience to meditate, that often, but I do believe in my case, maybe this could be a mind body driven syndrome.. I still have bad anal pain today. I sleep well, but the moment I step out of bed and think of of the pain, my muscles clench and the pain spikes.. Same thing happens if Im rushing, like now to get all the holiday prep done.
If Im happily distracted (I was at a dinner with family I hadn't seen in ages, a few weeks ago ) guess what, I don't notice the pain. It comes back tho, when I return home, the place I consider my prison.
Im pursuing new PT avenues now and my new PT thinks spinal issues has been my pain cuase all long..He's highly educated in pelvic pain and had even written a book about i,but my nervous self is scared to do the exercises he advises as they are very different.
In summary, I really need to learn how to stop worrying and thinking about this syndrome.. If I could let go of the pain then maybe it will leave me alone.! Any thoughts or advise apprreciated.. Merry Christmas to all! and thanks!