PT role and paradoxical relaxation by Dr Wise

[Selbourne]

The latest statistics published on the WAP show a median pain reduction from a 4 to a 3 (within a select group of participants) which is not exactly astonishing.

That's after a fairly short followup. The WAP takes a long time to have full effect, because it involves nerves and nerve pathways (notoriously slow to heal). I improved steadily over years and am still improving.

This is not the sort of treatment that acts like surgery, where you wake up and within weeks you're better. It's a long slog, and involves quite a lot of patient input and effort (which is why it often fails, IMO).

Even if you ascribe to a psychogenic origin for pelvic pain, the WAP is just not sufficient. More recently, people like Dr.Peter Levine or Dr. Robert Scaer have linked various pain problems to trauma and in particular to pre-verbal stage trauma. A complete psychogenic cure requires in-depth psychological work which is way beyond the scope of the WAP.

You may be right, and this may also partially explain the 30% who do not improve.

The PT as part of the WAP is also immensely confusing for sufferers. Patients get obsessed with those elusive trigger points that just keep coming back. It does not bring them closer to a cure.

I don't think a lot go back for further treatment, but I do not have exact percentages. It's not surprising some go back though, because one week is really not enough for such a life-changing, complex treatment. But I agree one can become too wrapped up in trigger points, whereas deep relaxation is more the key (was for me anyway).

Regarding your thread of WAP success stories, I personally know 2 of them that have relapsed since.

I also relapsed, but just ploughed on, and kept getting better. Relapses are normal, and it's rare to find someone who does not relapse at some point.

[Violet M]

Selbourne, thank you for editing your post. The link to your success story doesn't work. I have sent a PM to Hermajesty. You are welcome to PM me the links to any other posts on WAP you feel need editing and the moderators can have a look at them.

Regarding the publication you cited, that is only one of many and includes a sample of only 16 patients. You know what though, if I am in serious pain, have a pretty certain diagnosis of PNE, have tried everything else, and I'm still living in bed, I'll take a 50/50 chance at success.

Glad to hear you are doing better.

Violet

[Selbourne]

Voilet, regarding PNE surgery, it's seen as a last resort, even by the few surgeons who perform it.

In many countries, the concept of an entrapped pudendal nerve is unknown or regarded as a fringe idea with little research support.

Prof Anderson used to perform PNE surgery, but became convinced that it was not helping patients and now will not do it.

If you search this site for "Wise" you'll find a few threads that need to be heavily moderated or deleted, eg:
http://www.pudendalhope.info/forum/view ... f=35&t=923
http://www.pudendalhope.info/forum/view ... f=3&t=2258

Look especially at the posts by "Charlie" and the matching "me too" posts by people who echo suggestions of scam without ever having been to the clinic. Bear in mind that the real identity of "Charlie" is known, and despite his claims to have been a patient of Dr Wise, he has never attended the clinic (according to the cp.com website). You'll notice that he always reports what others are saying about the clinic, and what others paid, and shows other people's trigger point maps, but not his own. He never went to the WAP.

I've started to flag some of the errors in those threads with reports to the moderator. Tell me if that's ok.

[Violet M]

Thanks, Selbourne. We'll have a look at these but it's going to take some time as they are rather long threads. If you want to flag items that's fine with me but we may disagree on what's OK and what isn't. Just because you think it is an error, the person who posted it may not. We may have to delete some of your flags. We will try to remove disparaging personal attack remarks from the thread, however.

I agree that PNE surgery is a last resort. I've said so myself before.

Regarding Charlie, I do not know his identity and we have no way of proving who is lying and who is telling the truth regarding treatments they claim to have received.

Violet

[Selbourne]

I've started to flag problem posts in the first thread, but there is so much inaccuracy, dishonesty, innuendo and libel there that I've given up. I just think they need to be deleted. They're utterly unfair to the the WAP team, promote misinformation, and contain so many problems that editing them for accuracy would take a few hours.

[Selbourne]

Ok, here are just some of the problems in those threads:

1. Posts that assume that because some people are not cured by the WAP, the WAP is a "scam".
2. Posts that assume that because no WAP successes or cures are posted on this site, that they do not exist. The WAP is not meant to treat PNE, for starters.
3. Posts that assume that because a clinic is held in a hotel resort, it is not a clinic. Medical clinics are mostly ineffective at treating pelvic pain conditions, so why do we need to have a clinic in a medicalized setting?
4. Posts that assume that a psychologist and physical therapist team cannot treat a pain condition. We already know that urologists and MDs usually fail when treating chronic pain conditions, so why assume a psychologist (who cured himself of pelvic pain after 20 years) will also fail, especially when there is a lot of research linking pelvic pain to psychological factors?
5. The wrong costs are given as $6000. The cost of the 5-day clinic was $3,650 plus a $300 expense to be seen by a local Urologist prior to the clinic.
6. People talk about "cassette tapes" that do not last. You now get a mp3 player that does last. You also get a patented internal massage wand with pressure meter.

Etc etc ... as I said, there is so much junk in those threads, so many snide and unhelpful comments, such one-sidedness, that I gave up flagging all the garbage. Those threads kinda lower the tone of this forum, if I may say so.

If there are any questions, just post them here and I'll try to answer.

[ezer]

Why obsess with 2+ year old threads. It reflects people's experiences at that time. Yes, WAP trigger point maps and K7 tapes were lame back then. Maybe it is better now, I don't know. If somebody is interested by the WAP, they will go look on your forum or on David Wise's site for up to date information.
Would you demand that somebody edits an old Windows XP user forum to update it to reflect Windows 8 upgrades and fixes?

[Selbourne]

And BTW, those threads contain over-the-top attacks on the venue used for the clinics, the Flamingo Conference Resort and Spa, suggesting that it is "unsanitary" and a total dive with terrible reviews. Here's the reality from Expedia:

flamingo.png (9.49 KiB) Viewed 3302 times

[Selbourne]

Why obsess with 2+ year old threads. It reflects people's experiences at that time.

If you search for the WAP, these dishonest threads come up right near the top, which is totally wrong.

And no, those threads only partially reflect reality. They are mostly sensationalist and just full of inaccurate information and aspersions.

The WAP helped me and I think it's a shame that lies and misinformation about it are promoted here.

[HerMajesty]

Why obsess with 2+ year old threads. It reflects people's experiences at that time.

If you search for the WAP, these dishonest threads come up right near the top, which is totally wrong.

There are user reviews for all kinds of products all over the web - empowerment to the consumer that we were never blessed with before internet. Why were you conducting a search? The only thing I see "totally wrong" with genuine user reviews coming up 1st, is that it might be cutting into somebody's profits. That "somebody" can always take it up with the companies that provide the search engines, maybe they can explain why those threads are near the top. The order things pop up on Google et al is not the responsibility of anyone on HOPE.