Health Organization for Pudendal Education

Hi Guys,

Sorry for starting yet another post in the welcome section but I need to share this to my fellow pelvic pain sufferers. I had to also quote this from ezer because I was reading a previous post that initially made me think about this whole PN diagnosis.

ezer wrote:
I am not sure if the OP is still reading this thread but I think before considering injections and progressively more invasive procedures, he should explore the source of his prior anxiety.
None of the pudendal invasive procedures will help his co-morbid fibromyalgia and CFS that he described in his early posts IMO.

I was doing progressively better in the 2nd half of 2003 but then I had a relapse in January 2004. It is when I discovered PNE by searching the web. I was then diagnosed repeatedly with PNE by PN-aware doctors and in retrospect that label convinced me that there was something wrong that needed to be fixed. I had non-stop pain for the next 10 years...."

I am tending to start to agree with ezer on this one. I feel like I created this whole PN pain cycle for myself. Initially when the pain all started I found this HOPE forum. I read all the horrid stories on here, the crazy non success rates and the lifelong fear of never getting better. Instead of tackling this with a fresh mind I started this "PN" journey in a fearful state. The mindset that I have PNE and that I am scared to do anything in order for my problem to not get worse. Well, I am starting to take all this mind body stuff a little bit more seriously now as I am NOT getting better by simply treating the physical so called "fascial restrictions". I was up in NYC for a treatment back in March (I believe) with some top notch osteopath that apparently knows his stuff about fascial restrictions. If anyone can get you better its this guy. Anyways, turned out this appointment did nothing for me. During my trip to NYC that week I met a professional Rolfer that had been doing these physical treatments for 20+ years. We had a long discussion about the effects of fascia and the structural anomalies found in the human body. We talked about the basic trigger points, adhesions and these so called "fascial adhesions". But he raised many good points. He first asked if any one in this world even knows what a trigger point is? Can you even google and show me what a trigger point looks like? So me, knowing all that I had studied, i couldn't even address such a basic question. I said "well, its a build up of lactic acid that eventually forms a tension in the muscle blaa blaa" Sorry? its what? I gave it another shot, and again, I couldn't really come up with an answer. And that's when he said, what is more important, the muscle or the nerves surrounding that muscle? and I immediately started to see what he was going to say next. You see, trigger points and muscle tension only exists for one reason (usually that is) when a nerve becomes irritated (for whatever reason) and the body tries to protect itself, or the impulses of the nerve send these false irrational signals to the muscle. Forming some sort of ball of tension and pain. But, why do therapists treat the muscle/fascia if the nerve is the one to blame? And this is the whole basis of this guys philosophy now. He went from utilizing a full out physical and bio mechanical approach to healing to embarking on a life of placebo and mind body science. He told me that in his 20 + years of his profession that he has never met a person that got better from a physical treatment. He also said there is no way to actually remodel fascia. You can stretch fascia and hold it there for an hour and as soon as you let go, it will go back to its exact state it was previously. He said more people get better from adapting the mind body approach to healing than just the physical approach. For those of you who never heard of placebo studies go read about the sham knee surgery. What you believe in your mind will strongly effect the outcome of the results. For ezer, well he got better because he formed in his mind that there was nothing wrong with him. After a long time, his brain stopped sending those false nerve signals of fear and tension and naturally (i am assuming without physical therapy) his pain went away. Again, focus on the nerve (aka the brain also) and the rest will follow. Another thing that he told me that I wanted to share. His words "Did I ever tell you that after being in practice for some years that I realized a pattern that the only people who get better were the ones who saw their pain as a lesson? Others just want to get back to their life but they never could. Somehow lesson is transcendent." Which got me thinking, if that is the case, then it has to be a mind body syndrome also. Look in the success stories and try and pick out all the people that got better, I guess that is also a common denominator in their successes. I read a woman (or a guy..i am not sure really lol) who stated that they got better when they prayed to God, respected the universe and took this time to learn a lesson. Apparently they are somewhere like 95% better or something. Anyways, who knows if there is truth to all of this. A "lesson" and mind body is transcendent to healing.

I still would like to believe its a physical problem, and I want to find my physical problem, but countless therapists and the worlds best therapists might I add, all can't find a problem, well sh**, then how can I get better if there is nothing to find? I still do not know if I believe in this whole mind body approach but in the meantime of doing some physical treatments I have definitely also embarked on the mind body approach. Ya okay, people have compressed nerves etc. I am sure everyone on this forum read about how they did studies of multiple cadavers and found that many of them had compressed pudendals while they lived a pain free life. I almost feel like nerves can be compressed but limiting the inflammation around the nerve is more important than eliminating the compression. Nerves thicken when it is inflamed, causing even more of a compression. I feel like maybe thats why mind body works sometimes too because it does enough to limit the inflammation, and then the nerve reduces in size, further decreasing the compression and pain. Until the problem resolves completely.

Anyways, I could write more but I feel like I vented enough for the day. I feel like maybe Violet shouldn't be the chair of this forum because I write novels on here. Totally kidding Violet.

I am starting Hyperbaric Oxygen Therapy tomorrow also. Expensive and I know some people will say don't waste your money (save those responses btw), I feel like you need to find a treatment that your comfortable with. Like I said in previous posts, this rolfer also said, its not what therapy you do that defines it successful, its finding a therapy that you find more SIMS than DIMS (safety in me vs dangers in me) and your body will respond better to those treatments than the ones where you may potentially think will get you worse. If you think the treatment will get you worse, then it will. May not be any truth to what I am saying, but I still had to say it.

Venting done
-Dom

So you did not really know what caused your (pne) like a trauma or surgery or falling down or anything like that. I know exactly when mine started. From a pelvic trauma, accident. Bedridden 4 years now. Is it really that simple? Are you saying that some who come out of surgery with 50% or more less pain just experiencing a placebo effect? .respectively asking.
Robert

Hey Rob,

No, I don't think its that easy. And yes I did have an initial injury that brought on all my pne pain. It all started from a pretty low squat. I felt it immediately after that.

I believe this condition is triggered. It can be triggered from a surgery, a fall, an injury of some sort. But I feel like for the resolution of the problem it is much more complex than either waiting for the nerve to heal or stretching to potentially reduce or eliminate the compression. Like the cadavers that were studied majority of them lived a symptom free life but they had compressions. So this almost leads me to understanding that compressions are very common and you can live a pain free life if you have multiple compressions.

Take a look at this link for example:
https://scontent-ord1-1.xx.fbcdn.net/hp ... e=564A39BC

This shows percentage of abnormal findings on MRI and CT images. Majority of people have things wrong with them but manage to live a pain free life. Again, I feel like it is a trigger that causes the pain. I am not saying there is not a physical problem. I am still convinced that my problem for instance is physical, all I am saying is somehow the brain's pain cycle started and every time we fear things this pain cycle persists causing more tension, more compression and leads to even more pain. Then when we get surgery to correct the problem surgeons probably poke around on the nerve increasing its inflammation even more which causes the patients pain to increase after the surgery. Then once they have the increased pain the already frame in their minds that the surgery was not a success and wonder why they are worse and then they start believing that there problem is even worse. This is a vicious cycle. Maybe? Again, I dont know. I am thinking. Maybe I am wrong I have no idea. I am just thinking outside the box. I feel like pain has initiated in our nervous system and now we must do everything to correct our nervous system. Nervous system 'rewiring' rather than physical treatment and findings. If there was a physical problem would surgeons not already fix this problem by now? would surgery not work for majority of people? Pain is much more complex than that.

I am trying to start discussion for everyone to join their thoughts because I want this resolution for myself as well as everyone on this forum. Does all what I am saying sound stupid and foolish?

No, I don't think it sounds stupid, Dom. I think you can start out with a physical painful injury that can become chronic and lead to neural plasticity with physical changes in the brain and spinal cord that take place.

Something like the mindbody approach may be able to break that pain pathway cycle in the brain, but when it comes to the mindbody approach, I find that constantly focusing on your own emotions is a bit too introspective. Nothing gets your mind off yourself and your own pain and problems better than helping someone else out with theirs.

I would actually love for someone else to take over the forum. Are you interested, Dom?

Violet

Violet, your reaction about emotions is interesting. I can see how one would say that. For me to the contrary, it has been an amazing journey of self-discovery. In many ways I feel now that our minds are connected to a more central power or collective unconscious in a Jungian way.
I cannot resume my old life (I am sure the pain would return quickly), will never be the same, and that is completely alright for me.

It made me discover Eckhart Tolle but also Franz Alexander, Carl Jung, Wilhelm Reich, or Jean Piaget.

As much as I'd love to (hope you sense some sarcasm) I don't think I have "time" for it lol

Well, Dom, you are very diplomatic. If you ever have "time" let me know.

Violet

ezer wrote:Violet, your reaction about emotions is interesting. I can see how one would say that. For me to the contrary, it has been an amazing journey of self-discovery. In many ways I feel now that our minds are connected to a more central power or collective unconscious in a Jungian way.
I cannot resume my old life (I am sure the pain would return quickly), will never be the same, and that is completely alright for me.

It made me discover Eckhart Tolle but also Franz Alexander, Carl Jung, Wilhelm Reich, or Jean Piaget.

Glad it has worked for you Ezer.

Violet

Violet, thank you so much for banning the RE instructor Dave and ezer. They were an undesirable distraction. We can go back to discussing the epistemologically rock solid evidence-based PNE surgery that has a remarkable track record of success and honor the dedicated PNE surgeons that tirelessly work to help us.

I for one will miss Ezer on this forum he has given me a lot of 'food for thought' about chronic pain with his references, book recommendations and discussions with Violet and others.

Rosemary