Health Organization for Pudendal Education

Ezer,

I have been trying to work on the emotions. Revisiting events that gave me physical symptoms at the time such as, feeling in stomach, sweaty palms, etc. However, I haven't had any change in symptoms while trying to feel my emotions. I think that I may be one of those who has suffered due to daily accumulative stresses that I've put on myself. Like Monte says. In the last 5 years, my irritability, OCD, racing mind, kept on getting worse.
I've been in fight/flight for a very long time. So, I guess my body had to act out in result. Ezer, I think you are one of the very rare ones who can turn on and off pain instantaneously by working on emotions. From what I've read, it has been a gradual process for most who have done mindbody work. I'm trying to stick with it, however, frustration sets in with no progress. I know that you were unsuccessful the first time around with the mindbody approach. Something in your brain must have clicked the second time around. That's what I think it may be. Something in the brain clicks. Hope to get there soon.

Sage, Have you completely disconnected from physical symptoms? Stopped any pain journal, PT etc.
Did you talk to Monte or have you considered EMDR, brain spotting, or NET? I am not sure those modalities offer a complete answer but that could maybe open a few doors for healing.

Ezer,

I stopped PT a long time ago. I tried journaling but not consistently. I tried TRE, which helps calm my nervous system. I have talked to Monte briefly, read his book and listened to his CDs. Haven't had phone consult with him. I have not done Net, EMDR, or brain spotting. I've tried a million alternative therapies but not those ones.

Sage, does anything besides sitting make your pain worse? The fact that you can exercise without pain I would think pretty much rules out pne.

sage, you mention that I was unsuccessful the first time. Indeed.
It is because I was following strict Sarno orthodoxy: Read and re-read his books. Knowledge penicillin. Watched his videos daily. Did structured worksheets. Read any TMS books I could find.

In fact I was distracting myself. Anything but attend to my emotions. That is a major flaw in Sarno and his cognitive method.

ezer wrote: It is a very good chiropractor though... Going from debilitating pain to no pain in one session when the nerve is alledgedly so badly damaged.

I still see a problem:

1 The chiropractor frees your nerve from the ligament and you are instantaneously pain free.
2 Bautrant frees your nerve from the ligament and furthermore frees the nerve entrapped at several other locations and it takes years for the pain to abate.

Even if you add the CNS windup that you suspect, it is difficult to comprehend the scale discrepancy. From merely an hour to years.

Ezer, can you explain why it took you a year of mindbody treatment for you to become pain-free?

Let me suggest an explanation as to why it may have taken both of us some time to calm down the CNS.

Although first let me say it did not take years for the pain to abate as you alleged. Actually, I was significantly better less than 2 months after surgery because I remember being able to help a lot in the kitchen cooking Thanksgiving dinner in November and there is no way I could have done that before surgery. (surgery was in October) I was off narcotics 9 months after surgery, so it took months, not years, before I was significantly better. But anyway, there is a possible explanation as to why it took some time.

1. Neuroplasticity. Once the brain and spinal cord get rewired, it's more difficult to reverse the pain. http://bja.oxfordjournals.org/content/1 ... 1/i69.full Scroll down to the section on neuroplasticity.

"Neuroplasticity, or the physical remodelling of neuronal cytoarchitecture, occurs shortly after the onset of persistent acute pain and leads to the transition from acute pain into a chronic pain state. As a result of a peripheral lesion that persistently generates pain impulses to the spinal cord, inhibitory interneurones responsible for modulating painful nerve transmission impulses eventually die. Furthermore, glial cells remodel neuronal synapses to intensify nociceptive transmission. These pain-transmitting neurones become more sensitive, react more intensely to stimuli, and grow more connections to second-order neurones within the CNS. In short, this process of neuroplasticity leads to central sensitization in which activity dependent phenotypic changes are seen in the dorsal horn neurones and other CNS structures, including higher centres."

Here is another interesting article:

http://www.macalester.edu/academics/psy ... d_two.html

Pain can be sort of like a habit. Your brain gets used to sending signals along a certain pathway and in order to break the habit you have to train your brain to use different pathways. It is easier to break the habit early on.

But there are other possible explanations too.

Clearly my PN was caused by mechanical issues. It is possible that getting the pelvis into alignment via a chiro treatment may actually have taken pressure off the nerve temporarily more completely than surgery did. Think of it....if your pelvis is sagging on one side, if you realign it the pressure all along the course of the nerve could be relieved. But during surgery, I only had the SS ligament severed which could mean some irritation still remained on the nerve from the ST ligament. I knew going into the TIR approach with Bautrant that it might not completely free up the nerve from the ST ligament.

Nerves take time to heal and there is a lot we can't explain about them. I know one person who had a tumor removed from their facial nerve. It took 2 years for the nerve trauma symptoms to go away. My acupuncturist had a tumor removed from her leg and it took 12 years for the nerve related symptoms to subside.

Violet

Violet, many forum members have contacted me and told me that their pudendal pain started during or shortly after a terribly stressful period. It was then triggered by a benign physical incident (sitting too long, falling from a couch etc.). It is at odds with the theory of entrapment.

Why the link between stress and the onset of pudendal neuralgia?

It is a constant. I see it over and over. I will respect the privacy of people that have contacted me but it is truly a widespread phenomena.

if your pelvis is sagging on one side, if you realign it the pressure all along the course of the nerve could be relieved.

This is where I have a problem. Not a single PT, rolfer, or chiropractor was able to explain to me why a crippled person in a wheelchair does not suffer from every nerve in the pelvis. But somehow with our pelvises tilted by 2 degrees or higher by a few centimeters on one side we must be experiencing excruciating pain because of it.

Nerves take time to heal and there is a lot we can't explain about them.

That is also something I take with skepticism. Everything that is odd or does not fit the entrapment theory is deemed a very complex problem that is hard to understand. Frankly even the PN surgeons do not agree between themselves from Filler and Dellon in the 3-6 months camp while others are in the 1-2 year camp.

Even Dr. Jerome Weiss disagreed with the central sensitization hypothesis. I am not saying it is wrong, all I am saying is that I heard wildly contradicting explanations by the PN experts.

My psychological explanation is only a model. It simply tries to explain what is going on in a useful way you can get your mind around. Again it is a simple model that is sufficient to heal. Much more detailed explanation exists but it is not helpful in terms of healing.

But the best explanation I have seen is the one from Dr. Candace Pert --Pert was an internationally recognized pharmacologist that published over 250 scientific papers-- and her discovery of poly-neuropeptides. It explains quite well how emotions are linked to muscles tightening and squeezing nerves and ultimately generating pudendal neuralgia --but not entrapment--. The link being those chains of amino-acids, or poly-neuropetides.

http://candacepert.com/
https://en.wikipedia.org/wiki/Candace_Pert

NEUROPEPTIDES AND THEIR RECEPTORS: A PSYCHOSOMATIC NETWORK
http://candacepert.com/wp-content/uploa ... -820-6.pdf

ezer wrote:Violet, many forum members have contacted me and told me that their pudendal pain started during or shortly after a terribly stressful period. It was then triggered by a benign physical incident (sitting too long, falling from a couch etc.). It is at odds with the theory of entrapment.

Ezer, I think it makes perfect sense that some people develop pudendal neuralgia due to stress and tightening of the muscles. I have never disputed that and we are actually in agreement there. But that explanation doesn't work for everyone or match everyone's experience. It just does not logically explain what happened to me.

ezer wrote:Not a single PT, rolfer, or chiropractor was able to explain to me why a crippled person in a wheelchair does not suffer from every nerve in the pelvis. But somehow with our pelvises tilted by 2 degrees or higher by a few centimeters on one side we must be experiencing excruciating pain because of it.

You contend that people develop PN as a result of stress sometimes triggered by a fall or sitting. Can you explain why some people who have stress develop PN and some don't? Or why zillions of people who have stress and sit a lot don't develop PN. Or why many people who fall and have stress don't develop PN? How do you explain that? You can't explain that anymore than I can explain why some people develop PNE and others don't.

I don't think everyone with a tilted pelvis develops PNE. There are other explanations for PNE besides a tilted pelvis. I don't know why some people develop entrapment and some don't but I have always believed there could be a musculoskeletal genetic component combined with other factors, incidents, etc. Why do some people have other musculoskeletal problems, such as Marfan syndrome?

ezer wrote:http://candacepert.com/wp-content/uploa ... -820-6.pdf

Interesting but I can't see what it has to do with someone who experiences a mechanical injury. Surely you aren't suggesting that someone with a broken leg has a psychosomatic etiology to their pain? Why can't a hardened ligament compressing a nerve cause pain?

Violet

But that explanation doesn't work for everyone or match everyone's experience.

I am sure that prior surgery or bad accidents can trigger PN. What I don't understand is that we go through life alright but some puny minuscule incident triggers years of unrelenting pain. There is no cause to effect. There is more to the story.

It just does not logically explain what happened to me.

I am not disputing that at all.

Can you explain why some people who have stress develop PN and some don't?

It is some overload situation. You go above what your mind can tolerate in terms of stress (the amygdala or emotional center that is not accessible by your conscious self --data is not stored as language in the implicit memory). You set off a continuous flight or fight mode. Then the most minuscule incident triggers pain. You lift a box and you get back pain. You are in a parking fender bender and you develop whiplash syndrome. You land on your coccyx and you develop pelvic pain. Yes there is a genetic component of course.

Interesting but I can't see what it has to do with someone who experiences a mechanical injury.

It doesn't but permanent pudendal injuries cannot be that common. The minuscule trigger incidents (sitting in a car for 2 hours, falling 10 inches from a couch) don't match IN MOST CASES what comes next: years of suffering. Again very bad accidents happen. I am not disputing that but it is rare.

I remember a forum member that "got" PNE by walking backward while lifting a coffee table. Really????? That cannot be serious. Or like that young patient that had sex while not being erect. It is nonsense to attribute PNE to such non-events.

Surely you aren't suggesting that someone with a broken leg has a psychosomatic etiology

A broken leg heals Violet. Like most things. You don't get years of debilitating pain from a broken leg => thus a broken leg is definitely not psychosomatic.

Ezer- what is your opinion on someone with a physical issue continuing treatment but also doing emotional work? I know your initial reaction would be to say physical treatment must be stopped but hear me out.

I got an epidural at L1 that shot numbness and tingling into the dermatome of the pn. I had great pain relief and know for sure there is a connection with the thoracolumbar junction and the pn because my mind could not have created the instant reaction my pn had to the injection in a place that is supposedly unrelated. So there is something physical going on because the rest of the population would not experience what I did if they were to get an L1 injection.

My initial injury was fairly significant. As you know I'm a firefighter. I used to lift weights. When I injured my thoracolumbar junction I was squatting 300 lbs. I weigh about 165 so it was a significant injury that caused severe back pain for a month or so. I did nothing to treat the back injury as I was a 28 year old and invincible. I continued to lift during this time up until my so called pn symptoms got really bad. There is now a documented connection between the tlj and the pn. When my physical therapist pushes on that area of my spine it refers all of my symptoms.

My back is dysfunctional right now and I know it is the source of my pain.

I guess I said all that to justify my physical treatment. I have been journaling and doing emotional work as well as my spiritual routine I go through daily.

I suppose the point of this post is to get your feedback. While I understand there is a physical component to my pain I don't feel like it should cause so much pain. People with much more dysfunctional spines then me walk around pain free. My cns was not in a good place at the time of injury. I ran the most calls in the fire department the year before and just had my third kid. I won't get into the details but I wasn't quite ready for another child and was getting absolutely no sleep. My wife during this time also went back to school. I was tired and pissed off. I know this condition wouldn't have started had I been in a better place emotionally and spiritually.

My plan right now is to continue physical therapy until my spine gets reasonably normalized. If I still have pain at this point I will stop treatment once again. I have explored all the emotions that seem to have been contributing to my cns wind up. I am getting better. I'm returning to work in a light duty capacity next week. This is a big step for me. The emotional issues I seem to have now are really just me being pissed off that I can't work on the fire engine and do the things I want to do. Sorry for the rambling post but wanted to get you all the information. Your feedback would be greatly appreciated.

Thanks
Seth