Health Organization for Pudendal Education

Hi, Has anyone here heard of the wise anderson protocol on Pelvic pain. After reading the book `headache in the pelvis` a lot of this book seems to make sense. It does state though that Pudendal neuralgia sgy generally doesnt work and the author stated that he and his colleagues have not seen or heard of 1 success story with sgy. Also says fewer people actually have true pn. I know each one of us wants a diagnosis but could pn be red herring in our need for understanding and acceptance. Live in Scotland where there is hardly any recognition let alone treatment. Before considering sgy need to know am not making a big mistake. Welcome thoughts. Len

Lenny,

Charlie has done the whole Headache in the Pelvis protocol at Dr. W's clinic for a week. He did not have a good experience. Maybe you could PM him. You could also use the "search" button on the right hand side of your screen for "Wise" and see previous discussions about it.

There are a bunch of people who have spent thousands of $$$$ on the Wise protocol with no relief -- including some of the members of this forum. There are many people who've had surgery who have gotten relief. The sensible way to go is to try conservative therapies including some of the techniques described in the book but if they don't work, keep an open mind to having surgery. There is no "one size fits all" and you just have to find out what works for you.

Take care,

Violet

Lenny,

Most people do try PT before surgery, which is only sensible as the surgery does not have a great success rate. And most of us in the USA do not have access to PN aware PT's either. Reading about PT for this condition , like you are doing, makes good sense, as you can see that most of what they do is geared towards either loosening up tight muscles or aligning the pelvis. A lot of the muscle work you can do for yourself. Going to the Wise clinic in California would be extremely expensive although there are a few reports of people who have been helped there. I know there is a recent book by a British author, Tim Parks, (I think that's the name) who claims he had success there.

I would suggest that you PM some of the other male members of the forum who live in the UK. They can help you with finding the resources closest to you. I don't know of any in Scotland, but there are quite a few Englishmen who write or have written on here. Johnd.h had surgery in London, there is ChrisUK, Spikehades is another. If you go to the UK section you will start learning names easily

Of course there are lots of helpful women on here from the UK......but you know what I mean.....i just think it might be easier for you to communicate with another man.

I and many others have done the Stanford Protocol with no success. You can search this forum for feedback. I will only say that the latest study of the Stanford Protocol shows very mediocre results that are in the placebo territory.
At best I see it as a pain management tool.

Thanks to all responses. Seems like it's not the magic pill it appears, Len

Lenny,
I did the Wise-Anderson clinic (which at that time was called the "Stanford Protocol" - they had to cease using the Stanford name since then)
Anyway, the worst part about it for me was that the "Headache in the Pelvis" book and the clinic suggests that chronic pelvic pain patients are responsible for creating our own pain... I bought into that thinking right from the beginning, especially because I had been through some emotional stress around the time my pain started. I think it also gave me some sense of control, that I would be able to "fix" the problem with time and work. So I was ready to believe that I was causing pain by tightening my pelvic muscles (like the example David Wise uses in his book of the fearful, anxious dog who tucks his tail between his legs, which causes tension in that part of his body.)

We were taught in the clinic that we could 'heal ourselves' over the course of a year with the techniques from the book and the relaxation sessions, which were provided to each patient on cassette tapes at the end of the 6-day clinic. The protocol was that you lay down, tune out the world and tune in to David Wise's voice taking you through the relaxation sessions, which were like a form of meditation.

When I did not improve after about 8 months of daily sessions, I felt like I was failing. This was devastating to my state of mind and my spirit at the time. I was in intense chronic pain 24/7 and no matter how much I meditated and studied the protocol, as well as paying huge amounts of money for the "proper" physical therapy, I just kept getting worse. In fact, after PT I would be flared for days; sometimes I could hardly walk out of my physical therapist's office.

Now I know WHY I was getting worse instead of better. It was subsequently discovered that my pelvic nerves were badly damaged (specifically the pudendal nerve in my left alcock's canal and several perineal branches near it.) I was subsequently told by two highly regarded PNE surgeons that there "severe pathology" in my pelvic nerves. NO WONDER relaxation and PT weren't doing anything except making me worse!!!

It is very damaging for chronic pain patients to think that we are responsible for our own pain. Likewise, it is damaging to suggest that we are capable of turning it around, if we can only "relax" our pelvic floor enough through meditation and the right kind of thinking, called "paradoxical relaxation."

I say good luck trying to fix a broken arm with these measures... and by the same token, good luck "fixing" pelvic nerves that are damaged in ways that no amount of relaxation and "letting go" can affect. Most chronic pelvic pain patients have actual, measurable pathology of the nerves. Pelvic nerves suffer repetitive injuries in many ways, such as competitive sports, especially cycling... and many women suffer from nerve damage caused by hysterectomies, sling procedures for incontinence and vaginal childbirth. The pelvic nerves, often the pudendal nerves and branches, in these cases are often affected by trauma and swelling, compressing the nerves into ligaments, bone and causing scar tissue which creates more problems. Sometimes it is damage to a nerve during surgery that is the problem, and during PNE surgery a misplaced stitch or staple is found to be literally "squishing" the nerve.

In my case, I was found to have a badly damaged pudendal nerve in two major areas. Dr. Hibner found my pudendal nerve "stuck" to the sacrospinous ligament Dr. Dellon took photos that show the nerve looking like a "curly fry" twisted and compressed in scar tissue, with indentations and differences in color from where it had been compressed for so long. My perineal branch in that same area was also a mess, and had developed a neuroma, which looks like tree roots growing.

I read this quote that had a profound impact on me, which helped me get out of my depressed state of mind. I still keep it where I can see it often, so I don't ever forget:

"This idea that pelvic pain is the patient's own fault is an outrageous and evil fraud."

To all my fellow pelvic pain sufferers:
Please have compassion and love for yourselves. Don't let anyone tell you your pain isn't real, and especially don't let anyone suggest that you are causing your own pain! That is ridiculous and even abusive. Realize everything you have been through and give yourself a pat on the back for enduring. You have been through more than most people do in a lifetime. Hold your head high and know there is help for you. The medical resources for us are still slim, as this is a new diagnosis, a new area of study for doctors, and it is taking a while for the medical industry to catch up. We are on the forefront. But there are solutions and we are starting to find them. It is usually through our own research and perserverance that we find relief. So keep trying, talk to others, stay tuned to the forums and you'll find some answers.
much love to all of my PNE friends!

LottaNerve wrote:the "Headache in the Pelvis" book and the clinic suggests that chronic pelvic pain patients are responsible for creating our own pain

With all due respect LottaNerve, that wasn't what I took away from the book (or from talking w. Dr. Wise on the phone years ago). My interpretation of the message was, there's a sector of people (essentially 'Type A' personalities) who are more prone to a chronic tightening of the pelvic floor muscles, b/c they have a tendency to clench those muscles due to an almost subconscious reaction to stress. And after time, all that chronic clenching can cause the muscles involved to actually physically alter (to become shortened & weak).

I don't think Wise & co. are saying anywhere that it's these peoples' fault though, or that the pain they're experiencing isn't real (after all, tight muscles can painfully impinge on the nerve, or even just cause intense muscular pain in their own right). I think the point is more, there's simply not a quick fix (like surgery) to 're-train' a tight muscle to revert back to its healthy/relaxed state. Physio (in theory) can help, but it does also require more holistic lifestyle changes on the part of this specific category of patients (ie. learning how to relax & to not clench said muscles in times of stress).

LottaNerve wrote:good luck "fixing" pelvic nerves that are damaged in ways that no amount of relaxation and "letting go" can affect.

I agree w. this statement...if, for example, your nerve is truly trapped by scar tissue, no amount of meditation or PT is going to un-trap it. I do think Wise et al. are too skeptical of the existence of PNE on the whole, & decompression surgery as a potential fix in this sort of situation. But I also think the symptoms of the condition they describe can often closely mimic the symptoms of true PNE (esp. if the muscles are impinging on the nerve). And as such, it's crucial to try the physio & relaxation they advocate (even if not with them specifically) before even starting to consider any risky surgeries. As I've noted elsewhere on this board, I'm pretty sure in my case I mistakenly concluded it was nerve entrapment, when it was actually muscle tension all along (& I'm now...at least so far...worse off post-op as a result of that error).

LottaNerve wrote:Most chronic pelvic pain patients have actual, measurable pathology of the nerves.

This claim I'm not so sure about. Is it based on an actual stat, or just a personal sense?

I don't mean to attack you at all here, but I just think we can sometimes be a bit trigger happy to advocate surgery on this board, & I just wouldn't want people to make the same mistake I feel I've made w.out thoroughly exhausting the less invasive options first (& even if the nerve is the issue, the guys in Cornwall seem to be getting increasingly promising non-surgical results w. their Protocol...I would say people also owe it to themselves to at least contact them before they reach out to any surgeons).

My 2 cents, for what they're worth...

pelvis_stressly,
Many of us have done the 6 day clinic and subsequently the 2 year program. The fact is that I am yet to have met somebody that was cured or made significantly better from the protocol (the glorious Amazon reviews do not count...).
My "classmates" and many other people I have been corresponding with report the same. In essence it is a valuable pain management tool but nobody experienced a continuous and lasting improvement.
The latest statistics published show a median pain reduction from a 4 to a 3 (within a very select group of participants) that seem to also confirm what I suspected all along.

Yeah, but can't all the exact same criticism be made towards PNE Surgery (not much data available, what data does exist doesn't exactly boast great results, not tons of encouraging anecdotal reports, expensive, etc.)? Plus, add to that 'invasive/potentially risky'.

Look, I'm not really trying to defend Wise & co. specifically (or anybody else). I just think there are lots of potential causes for the symptoms we experience. And patients owe it to themselves to investigate all of them before jumping into surgery. Again, w.out really intending to focus on Wise & his protocol specifically, I think generally the condition of chronically tight pelvic floor muscles certainly exists, and that relaxation/meditation & PT are the first lines of defence where that's the case (vs. genuine nerve entrapment).

ezer wrote:The latest statistics published show a median pain reduction from a 4 to a 3 (within a very select group of participants) that seem to also confirm what I suspected all along.

It's not all about pain though. For me (& others) there are other issues such as ED, urinary incontinence, etc. which are the main presenting symptoms. And relaxation & trigger point PT (at least anecdotally) seem to be helping in a lot of those cases (see some of the testimonies on this board... http://hardflaccid.org/ ...thanks a lot btw to flyer28 for turning me onto said site!).