Health Organization for Pudendal Education

HerMajesty wrote:Surgery is a cure for a small minority of individuals. So far Celeste you are the only individual I have run into, who has been cured by surgery. The general statement made about surgical results is: post-surgery, 1/3 are worse, 1/3 are the same, and 1/3 improve. Of those that improve, a minority have a 100% improvement. You are rare indeed.

What evidence do you have for this statement?

I would argue there is far more science behind surgery than say trigger point treatment. For instance there is no diagnositc criteria for a trigger point. You just have to trust your therapist when they say they have found one. From my own experience the diagnostic criteria for a trigger point seemed to be whether it hurt or not when someone pressed it. The therapist would press a sore spot, I would jump and then the therapist would tell me that it was a trigger point.

The farcical aspect is confirmed when the PT asks you how you are afterwards. When you say you are worse they will often say that's a good sign , when you tell them you are better the treatment is clearly working. It seems to be a win, win treatment for them. I persevered with it for ages, combined it with meditation and saw some of the supposed best PTs. I met a lot of other patients and I am yet to hear of a success story with it. I think people that recover with PT are rare indeed. I agree it can bring short term relief but in my case it would last a few hours if that. I expect massage is probably just as good. Someone who has a trapped nerve in their back will fell better after a massage but it cannot cure them.

I am not denying that there are tight bands in muscles but is it not concerning that trigger point treatment was developed by Travel and Simons in the 1970's and yet even today there is no universally agreed diagnostic criteria for a trigger point? The science behind PT treatment for pelvic pain appears to be alarmingly weak.

In my view PT myofascial treatment for pelvic pain is a case of the emperors new clothes. Judging by this thread its good to see more and more people have the courage to say that the emperor is naked.

HerMajesty wrote:Surgery is a cure for a small minority of individuals. So far Celeste you are the only individual I have run into, who has been cured by surgery. The general statement made about surgical results is: post-surgery, 1/3 are worse, 1/3 are the same, and 1/3 improve. Of those that improve, a minority have a 100% improvement. You are rare indeed.

Not rare at all. Several of my PNE friends have gotten a surgical cure, though none as quickly as I was fortunate to have. I've met two of them in person and spoken with others via email and phone. The thing is, they get well and they don't want to hang out on the forums talking about it. Wendy just got well from surgery and doesn't want to hang out, as a recent example. To each their own. But when you go saying "vast majority", you are talking about who does hang out on the forums, not the surgical population as a whole.

Surgical relief is possible. The stats I've always heard in the peer reviewed journal work of Robert and Ansell is, 2/3 get better (including some amount of full cures) and 1/3 do not (including some amount of people feeling worse). That does NOT work out to 2/3 cure and 1/3 worse, by the way. I think you've gotten some very negative information. All the time I talk to people who say how scared they are what they perceive to be the high rate of getting worse. Except, it just isn't true. It's only happened to a few people.

You have to ask why somebody would push that information when nothing in the literature backs it up. I'm certain that a lot of it comes from the PT community in California, which is mightily interested in keeping the money flowing in for endless PT; Stephanie P. has gone on record as saying she doesn't believe in PNE and thinks surgery is bad. Clearly it's just not in her financial interests to refer somebody on to surgery when she can keep them coming back for more PT.

I was just thinking about how all of this rhetoric of fear is actually (for once) more damaging to affluent people. Those who have the means to pursue PT year after year after year may get nowhere and lose a lot of time. Somebody of lesser means is really going to have to make their treatment dollar work harder, so they are forced to really make sure they're not getting ripped off and to move on from things that clearly don't work.

Celeste wrote:Surgical relief is possible. The stats I've always heard in the peer reviewed journal work of Robert and Ansell is, 2/3 get better (including some amount of full cures) and 1/3 do not (including some amount of people feeling worse). That does NOT work out to 2/3 cure and 1/3 worse, by the way. I think you've gotten some very negative information.

Celeste wrote:HerMajesty wrote:
Surgery is a cure for a small minority of individuals. So far Celeste you are the only individual I have run into, who has been cured by surgery. The general statement made about surgical results is: post-surgery, 1/3 are worse, 1/3 are the same, and 1/3 improve. Of those that improve, a minority have a 100% improvement. You are rare indeed.

I must've gotten the same negative information. I read the same general statement in numerous threads from pudendal.info. I could be wrong, but I thought it came from Hibners patients.

The above survey results from the old board would tend to bear this out...however I was not "pushing" this information merely repeating what I have heard many times as yes, a "general" statement...also a friend of mine OFF-board who was looking into PN surgery said that this info was front-and-center on the website of one of the big names in the surgery, but I have no info other than word of mouth to confirm or deny this, and can't remember which Doc...gotta run and be gone for the day so can't do the back-and-forth about it...fact is this is a common general statement I had picked up on the old board but nobody else was ever accused of "pushing" it as if they had an agenda - that is the kind of thing that moves something from the level of discussion / debate to personal attack / argument which is where I am OUT.

Karyn wrote:I must've gotten the same negative information. I read the same general statement in numerous threads from pudendal.info. I could be wrong, but I thought it came from Hibners patients.

Yeah me too, but there's nothing in the literature to say that 1/3 get worse.

Celeste wrote:

Karyn wrote:I must've gotten the same negative information. I read the same general statement in numerous threads from pudendal.info. I could be wrong, but I thought it came from Hibners patients.

Yeah me too, but there's nothing in the literature to say that 1/3 get worse.

I also have heard it but where has it come from? As you say there is nothing in the literature that states that.

As for the survey results from the old forum there is not a single Dr that would take those results seriously. I am all for trying to get more information to patients and commend the people that tried to do that survey. However that survey is really just a list of anecdotal reports from people. In no way could it possibly be regarded as reliable evidence.

Charlie wrote:I also have heard it but where has it come from? As you say there is nothing in the literature that states that.

I'm pretty sure it didn't come from literature. I'm almost postive it came from Hibner patients who posted on pundendal.info. I know there were more but (2) specifically come to mind: "Ron" and "PNESufferer". They were posting about their consultation with him and how impressed they were with his compassion and honesty. Something to the effect of, "Dr. Hibner didn't make any guarentees about the success of the surgery...." and then followed it with that stat statement. Ring any bells?

In Dr Hibner's publication, posted on the website on November 1, in Medical Advances and Education, he quotes the results of a French study by Robert et al . The study reported 40% cure, 30% markedly improved, 30% no change, 1% chance of worsening

Thanks to everyone involved in uploading this to the site, Jeanie

Hi Jeanie,
Thank you for the reminder about the link. But the "1/3 - 1/3 - 1/3" was easy to remember because of its equality. Again, not reported by a publication but by patients who inquired of him what the surgery success rate was.
Warm regards,
Karyn

Karyn wrote:Hi Jeanie,
Thank you for the reminder about the link. But the "1/3 - 1/3 - 1/3" was easy to remember because of its equality. Again, not reported by a publication but by patients who inquired of him what the surgery success rate was.
Warm regards,
Karyn

So now we need to pin down whether Hibner is telling patients that 1/3 of HIS OWN PATIENTS get worse from surgery, or if he is trying to say that 1/3 of ALL DOCTORS' PNE PATIENTS get worse from surgery. If it's only his patients, then that's one thing. If he's trying to say it about all doctors and all methods, that's something else, and I'd really need to see his source.

Let's also leave open the possibility that there is a misunderstanding here somewhere. Either patients could be misunderstanding the way he presents the information, or they could be misunderstanding it from one another.

I'm interested in getting to the bottom of this.