Stanford/Wise-Anderson Protocol experience

[MB]

I developed chronic prostatitis / chronic pelvic pain syndrome 2 ½ years ago after a mild chemical burn in an over-brominated pool. About a year ago, I was diagnosed with PFD and possible PNE (which didn't make any sense and I fortunately ignored).

I did the Stanford/Wise-Anderson Protocol class and subsequently had 45+ sessions of PT in addition to the daily relaxation.
Right now, the PFD is totally gone (confirmed by 2 specialists) which is great"¦ but the pain is still present. No change.

Tim Sawyer (the physical therapist in the Stanford team) tells me that there is a very specific set of people that benefit tremendously from the protocol. He also recognizes that unfortunately there is a subset that do not and he is unable to help them. I am one of them.

Finally Tim S. referred me to an excellent doctor. This doctor has a slightly different view on the chronic prostatitis / chronic pelvic pain syndrome problem in some instances.
He says that people who suffer from neuropathic pain tend to contract their muscles around the painful area. Trigger points and connective tissue restriction develop as a result.

This is somehow different than the theory floating here: PFD creates pain, get rid of the PFD and the pain goes away.
For that doctor, pain creates PFD in some instances. Get rid of the PFD and the sympathetically maintained pain is still present. There is no cure for it.

What disturbs me in some of the posts is the notion is that people who do not improve is because they do not have access to the right physical therapists (missing trigger points etc"¦). I had the best training and physical therapy.

I must report that the people from the class I stayed in touch with are reporting significant improvements. I also have great praise for the Stanford team. They are compassionate and helpful. I however object strongly to the notion that SP is the answer for almost everybody. It is certainly not a claim the Stanford team makes. At this point I consider the SP a valuable pain management technique for myself, not a cure.

[webslave]

This is why we need much more research in this area. I know for certain that factors in addition to PFD influence my case (e.g. gluten/wheat).

[scotsman]

MB - how and where does your pain manifest itself? Was there any significant change/movement from following the Stanford/Wise-Anderson Protocol?

Thanks
Richard.

[Viking]

MB

What are your symptoms ? Does your level of pain go down when you relax ? Does your pain increase when you are in a stressful situation or feel tense ?

These are sort of typical features of chronic prostatitis / chronic pelvic pain syndrome and I believe a lot of people here who experience this have benefitted from the Stanford/Wise-Anderson Protocol elements.

[alprost]

What disturbs me in some of the posts is the notion is that people who do not improve is because they do not have access to the right physical therapists (missing trigger points etc"¦). I had the best training and physical therapy.

I agree completely with your post - Pelvic floor TP's are not the only cause of symptoms. However, many people do not improve for the reason outlined above - they see an inexperienced or untrained PT who does miss trigger points.

To quote Dr Wise:

Knowing what I know now, I believe that there are very few physical therapists whom I would see if I needed to see someone.

One can do physical therapy for pelvic pain with a physical therapist with little understanding and experience in myofascial/trigger point release and receive little benefit. Going to a different physical therapist who is trained, talented, and experienced can make a huge difference.

However, and this is the unfortunate thing, you can only really rule out TP's after seeing the very best, as you have. I am in a similar position - after seeing Tim and still having some pain, I believe my remaining symptoms are likely to be coming from a hypersensitive prostatic urethra.

If patients report that they have seen a PT and not had any improvement, the possibility that the PT has missed something does have to be taken into account, and we need to make this suggestion. I for one saw a specialist PT whilst on vacation in Vancouver who missed over 15 trigger points which Tim subsequently found!

See this patients experience for another obvious example:
viewtopic.php?t=2376

[MB]

how and where does your pain manifest itself? Was there any significant change/movement from following the Stanford/Wise-Anderson Protocol?

I have severe burning pain on the right side of the penis and mild discomfort on the right side of the perineum.
My PNMLT and EMG are abnormal. MRI does not show anything.
I do not have any problems sitting and the infamous "PNE diagnostic nerve blocks" significantly increased the pain which disprove that PNE nonsense. Even after that, I was advised to consider surgery but this is another discussion"¦

Relaxation temporarily lowers the pain. So does a hot bath or massage/physical therapy. So far the best thing for me is connective tissue massage. It can make the pain vanish for 2 or 3 hours. No matter what, the pain always comes back. There is no change pre or post SP.

The theory that pain generates PFD and not always the opposite is interesting. If I stop physical therapy for 3 or 4 weeks, the PFD slowly creeps back.

If I read the definition of "Causalgia or Complex Regional Pain Syndrome" it fits pretty well even if I do not have severe vascular problems associated:
"A syndrome of sustained burning pain and allodynia after a traumatic nerve lesion sometimes combined with vasomotor dysfunction and later trophic changes."

When I read forums dedicated to Fibromyalgia or Causalgia pathologies, the following is commonly reported:

- A minor triggering event
- Sensitivity to weather patterns
- Some vascular sensitivity (elevation of the limb affected helps)
- Temporary improvement from baths, moderate exercise, physical therapy, massage and relaxation.
- They usually wake up pain free and it is downhill from there.
- Severe flare-ups with stress

I am experiencing the same even if I don't have purple feet or ache everywhere. I am well aware that RSD has been discussed at length in this forum and I don't want to re-open the debate. Nevertheless, the parallel is striking based on my experience.

[MastCells]

I did the Stanford/Wise-Anderson Protocol class and subsequently had 45+ sessions of PT in addition to the daily relaxation.
Right now, the PFD is totally gone (confirmed by 2 specialists) which is great"¦ but the pain is still present. No change.

Tim S. (the physical therapist in the Stanford team) tells me that there is a very specific set of people that benefit tremendously from the protocol. He also recognizes that unfortunately there is a subset that do not and he is unable to help them. I am one of them.

Finally Tim S. referred me to an excellent doctor. This doctor has a slightly different view on the chronic prostatitis / chronic pelvic pain syndrome problem in some instances.
He says that people who suffer from neuropathic pain tend to contract their muscles around the painful area. Trigger points and connective tissue restriction develop as a result.

This is somehow different than the theory floating here: PFD creates pain, get rid of the PFD and the pain goes away.
For that doctor, pain creates PFD in some instances. Get rid of the PFD and the sympathetically maintained pain is still present. There is no cure for it.

What disturbs me in some of the posts is the notion is that people who do not improve is because they do not have access to the right physical therapists (missing trigger points etc"¦). I had the best training and physical therapy.

I must report that the people from the class I stayed in touch with are reporting significant improvements. I also have great praise for the Stanford team. They are compassionate and helpful. I however object strongly to the notion that SP is the answer for almost everybody. It is certainly not a claim the Stanford team makes. At this point I consider the SP a valuable pain management technique for myself, not a cure.

Thank you, sir, for your very valuable contribution to this forum. I would ask that if you are still in contact with any of the other men who were treated by the Stanford team, please get them to post their results here. This thread will be saved for posterity in the archived forum.

[pdburnett]

I am new to this site and found your posting of 25 January very helpful. Currently I am working with a local physical therapist who has training in external pelvic muscles, but doe not as yet work with internal muscles.

I decided to try this approach to test the waters so to speak. I feel the Stanford/Wise-Anderson Protocol people would be plan B if needed.

I am clearly improved after 10 weeks. Severe pain in lower buttocks, down my legs and feet has improved dramatically. Burning in the penis has improved as well even though I know that internal muscle work is important for this symptom.

You use abbreviations PFD and SP. I'm sorry I don't know what they refer to. Perhaps you could let me know. I'm sure the reply will make me feel like an idiot but I just can't work the meanings out!

Thanks,

Paul

[timberdoodle]

PFD would be "pelvic floor dysfunction" and SP would be "Stanford/Wise-Anderson Protocol."