Health Organization for Pudendal Education

I didn't know what to think as I read this. As if things were not frightening enough already. http://pudendalquackery.tumblr.com/

Chex, whoever posted this is misinformed in many areas. They clearly don't understand peripheral neuropathies. The pudendal nerve can be trapped just like in carpal syndrome. The nerve can be badly damaged so even after the decompression surgery recovery most times is not 100% cure due to the damage nerve. Obviously, this individual is angry because the hernias were missed and I would be angry too but that does not make the doctors who specialize in PNE quacks. If you have met any of these doctors you would know they are all passionate to get their patients as well as humanly possible and most of them make you try everything under the sun before they will put you under the knife. Ask anyone who has seen Dr. Howard and Dr. Hibner. I for one am thankful that PNE is finally coming to the forefront as a legitmate diagnosis and this individual is clearly clueless!

Chex,
This is only one post, but if you type "quackery" in the HOPE search box, you'll be able to view this persons contributions to our site.
http://www.pudendalhope.info/forum/view ... ery#p23487
Kind regards,
Karyn

I think the piece is agenda driven by the individual's personal pathology to the point where it goes overboard in its absolutes: ie, NOBODY has PNE and let's talk about differential diagnosis...oh, no, wait, this section is going to be all about hernias because that's what I had!

I do not think it is totally misinformation: It merely has a spin on it which is similar to the spin you will see if you use a very liberal or very conservative website as your source of political information. It is still interesting and has some good points. But anybody who is scared away from a reasonable course of diagnostic investigation and treatment by this article, is reacting solely on emotion, primarily fear. There is useful information to be extracted here and there are biased generalizations.

Some examples of useful information:
- There are differential diagnoses which cause similar or identical symptoms to PNE. The high failure rate of surgery is in part due to PNE surgeons' fixation on PNE surgery as a near-universal solution to a particular set of symptoms.
- Dr. Potter is very well thought of; perhaps excessively so considering she has never to the best of my knowledge done a "blind" study in which she was asked to read a group of symptomatic and asymptomatic MRI's without foreknowledge of which was which.

Some examples misinformation:
Nobody has PNE.
Nobody is cured by decompression surgery.

Assuming the author is telling the truth, and I have no reason to doubt that, part of the problem was that (s)he had hernias and was told by three different PN doctors to get PNE surgery: Now THAT is the kind of issue we definitely struggle with in this community. many of the practitioners have tunnel vision, and patients have to be informed self-advocates because no matter where we go, we are going to get a biased opinion depending upon the background and philosophy of the practitioner. In this field, very little medical investigation of etiology is objective and rational. We as patients are left to sift the information and discern the most likely diagnosis and the best course of action. As long as this is true, you are going to wind up with very angry, frustrated patients like this one. That doesn't mean there is no PNE and that all decompression surgery is a scam. It does fly a red flag of caution: Pelvic pain is a field in its infancy; and the practitioners who have pioneered various aspects of evaluation and treatment are not by any means all good collaborators. You can go to a dozen of them and get a dozen different opinions. You had better be on your toes as a self advocate, declare yourself the head of your treatment team, and amass and analyze data from various tests and practitioners. Be your own detective. I am glad the author was able to do that, get a proper diagnosis of and treatment for hernias, and get on with life. I do know other people who have done the same with PNE and decompression surgery.
The call for more emphasis on differential diagnosis is appropriate, but the tone is over-the-top and the author outright dismisses some things which should NOT be dismissed in all cases.