Health Organization for Pudendal Education

Desperate,
I only had pain. No digestion or anything else. I only did mind exercises. No body work whatsoever. No PT, No donut pillows. Nothing.

I try and suppress the negative emotions the best I can over the last year,

Please don't. That is completely the opposite of what you should do. You need to experience your emotions instead, not repress them.
By suppressing your emotions you are making your pain worse (no matter what the source is).
Really, please read a couple of my links on mindbody before concluding it is 10% of healing at best.

I briefly looked at the books you mention. They talk about connective tissue manual therapy. I got tons of it and apart from a couple of hours of pain relief, no long term improvement. Did you get manual connective tissue therapy? How long did it take to feel better? Please elaborate.

I'll look at your other references but do you have links? Who is your practitioner? You say that there is too much information so why don't you narrow it down for us to what helped you the most?

ezer wrote: You told me on the private section of pudendalhope (that I cannot access anymore so I don't know remember exactly how you put it) that the surgeons had reported a 66-70% success rate and that was matched exactly by a certain group of people that you cited to me. That was proof in your opinion, that the surgeons were correct in their 66 to 70% success rate. One can deduce from that that you believe in a 70% success rate.

You completely ignored the point that I made in that discussion -- that you can select whatever group of patients you want and come up with whatever % you want. So to illustrate, I just chose some names arbitrarily and came up with 70% but I could just as easily have chosen another group and come up with 0%. The whole point I made was that coming up with a percentage by reading the forum is totally unscientific -- not that I believe in a 70% success rate. BTW, that was not a complete list of all of the people I know who had significant improvements from surgery but that is beside the point.

If you want to base your percentages on talking to 22 patients from the forum you are welcome to. One could deduce that proves you feel that what is said on this forum is scientific proof. I am flattered that you give that much credit to this forum.

The only reason I continue this debate with you, Ezer, is because some people who really do need surgery could come on the forum, read all of your negativity about surgery, and not have surgery when they really need it. That would be unfortunate. Conversely,it would also be unfortunate if people came on the forum and decided to have surgery when they really didn't need it. So I think a balanced approach, presenting both sides of the argument with all of the pros and cons is the best way to present the options without bashing one treatment or the other. Like Dom said, there is no "right" treatment for everyone.

Violet

You completely ignored the point that I made in that discussion -- that you can select whatever group of patients you want and come up with whatever % you want. So to illustrate, I just chose some names arbitrarily and came up with 70%

No, that is not correct. You made the argument for 70% with your group of patients which I found puzzling. In the same post you implied that surgery may have cured me. It was before I suggested any success rate numbers. In the next few days after you made your case for 70%, I did my own investigation to see for myself. Result: a whopping 13.5% success rate. It is only then that you started your argument of biased selection of patients.

Make the thread visible for all of us to see if it is such a big deal to you.

Violet. I did not come up with a "select" group of patients.
I un-archived 3 email addresses from my backup hard disk drive.
Once again. That group of patients consisted of:

- Anybody that had PNE surgery and that contacted me via PM between 2004 and 2012 on Tipna or pudendal.info.
- Anybody that had PNE surgery and that I contacted via PM between 2004 and 2012 on Tipna or pudendal.info.
- Patients that were at the headache in the pelvis retreat in 2004 with me and that had PNE surgery and with whom I kept in touch

I only selected patients that I corresponded with for 2 or more months via email/phone (so I know they are for real).

I did not hand pick surgery failures. In fact I mostly contacted people before my own surgeries. The list is not fake. You saw it. I did not make up rules to eliminate successes.

Your surgery success list is composed of only 9 names including yourself!! *gasp* That's it? You have spent all those years heading pudendal and pudendalhope and you know only 8 patients that are surgery success stories?? That is really tragic.

It is not surprising sadly when you see on the success stories section that from the 19 patients that had PNE surgery and that declared themselves successes, 12 people have relapsed since 2011 (that list is for you to see, I did not make that one up).

You are still evading my question: Do you think Dr. Filler and Dr. Dellon are being truthful. Do you think 87% of Dr. Filler's patients experience an improvement of 50% or more. Yes? No?

Like Dom said, there is no "right" treatment for everyone.

Dom with whom you keep agreeing with also said that in his opinion only 10% of patients benefit from PNE surgery. That pretty much eliminates surgery as a valid treatment don't you think?

LOL I knew the surgery topic was going to start so much controversy.

10 percent is still better than no percent. I just think like violet said that all options should be a consideration. Not all surgery is failure. But we need appropriate testing to determine someone is entrapped at the clamp. Otherwise the surgery is like a blinded dart game with odds no greater than 10 percent.

I agree odds of surgery are too low for them to be a strong option for this condition. Bc like ezer I am against them. BUT surgery will work for a select few only entrapped at the clamp Or by some mesh that was installed Etc.

Ezer, quite interesting that you said you practiced no body work to heal but only mind. I'll look into it. I'm curious. But who really knows if the surgery didn't in fact uncompress you and all you needed was the mind work to decrease the nerves from firing irratically and tamed the inflammation around them? If you had not done the surgery and got better just off mind work your theory would be much stronger. But how do you reallyyyyyyy know it wasn't a combination of surgery and mind work ? Don't take any of this personal. Just wanted to hear your thoughts.

10% surgery success rate is in placebo territory Dom. But for the 90% that are failures and had to borrow sometimes from their kids college fund, it is not exactly a great situation to be in.
Let me tell you why I think my surgery did not help me (which I can't prove 100% anymore than anybody can prove that their surgeries was the reason for getting better. Placebos are a reality).

- 2 years after surgery I was at my worst. I was a mess and on disability. But all the doctors agree that at the 2 year mark you can tell if the surgery was successful or not. Let me tell you it was not successful.

- I was diagnosed with entrapment at the alcocks canal repeatedly. My alcocks canal was never decompressed. I had a decompression at the piriformis and a decompression at the dorsal nerve. I am theoretically still entrapped at the alcock's canal and possibly at the ligaments.

A surgery cure is passive. You wait. And hopefully you get better. A mindbody cure is active. You get better the more you practice it. It is astonishing to have the pain vanish in response to working on emotions. You get better at it. It is interactive. There is a direct cause to effect.


ps: Please tell us more about your new treatment modality. Links would be appreciated. Name of your providers etc.

desperate wrote:LOL I knew the surgery topic was going to start so much controversy.

10 percent is still better than no percent. I just think like violet said that all options should be a consideration. Not all surgery is failure. But we need appropriate testing to determine someone is entrapped at the clamp. Otherwise the surgery is like a blinded dart game with odds no greater than 10 percent.

I agree odds of surgery are too low for them to be a strong option for this condition. Bc like ezer I am against them. BUT surgery will work for a select few only entrapped at the clamp Or by some mesh that was installed Etc.

Ezer, quite interesting that you said you practiced no body work to heal but only mind. I'll look into it. I'm curious. But who really knows if the surgery didn't in fact uncompress you and all you needed was the mind work to decrease the nerves from firing irratically and tamed the inflammation around them? If you had not done the surgery and got better just off mind work your theory would be much stronger. But how do you reallyyyyyyy know it wasn't a combination of surgery and mind work ? Don't take any of this personal. Just wanted to hear your thoughts.

If we follow your reasoning,
maybe Blossums acupuncture had a delayed effect and cured her after surgery.How long do we wait after a course of treatment. before it's deemed a failure? With surgery most people agree that about 18 months to two years should be long enough to tell.

...

ffseth,
I wish there was a magic way to determine if you suffer from a mindbody syndrome or not.

For me one of the telltales is that I used to wake up close to pain free and a few minutes later, the pain would come. If I managed to not "think". Not a thought in my head (like during meditation) the pain would not start until I started having thoughts.
I would brush my teeth, take a shower, empty the dishwasher all without thinking and while doing all this, I had no pain. The moment I started thinking about my day ahead etc. the pain would immediately come.

Watch this neat video from Eckhart Tolle on how to achieve not thinking:
https://youtu.be/dTFDfR47dl4

Also anybody that thinks pudendal pain means a pudendal entrapment should watch this video. Your brain decides if what you are experiencing should be pain (Prof. Lorimer Moseley is a leading expert on pain that ffseth mentioned above):
https://youtu.be/gwd-wLdIHjs

That lorimer Moseley video is great. I hadn't seen that before. Very informative.

Ezer,

So your basically saying you need to totally disconnect your mind from any thoughts? How's that even possible?

How do you wash the dishes without thinking about washing the dishes. I just find it so weird. It's almost like you found a way to stop your brain from thinking which decreased your pain receptors. While it does make sense, it's not practical. Do you still practice that daily? I can't imagine not thinking about daily things. I can however stop thinking about negative thoughts and suppress negative thinking. But to still thinking all together. Weird lol who knows it may make sense but it's so weirdddd.

And I can't provide the names of the practitioners bc they would rather not he mentioned (as you can imagine because then all of pudendal hope would contact them). But from what I can tell you I'm not lying. I want to help I truly do but they want to be anonymous. Any how don't credit any of my advice bc like you said I'm not healed. Why listen to the guy that's in pain everyday and hates life.

Seems like your doing something right considering your probably the only person that says is healed on this forum. I can discredit a lot of success stories on this forum that claim they're 100 percent healed just because I know them and have spoken to them. But I won't mention names. Bottom line is I'm looking for a cure...not just an 'improvement'. Though an improvement would he still nice obviously.

If what you say is 100 percent true and you are in fact 100 percent cured then I can't argue with you. Like you said, your doing this and your cured so I guess I have to say mind body works. I just don't know how to disconnect the mind (unless I'm a monk or something).