Health Organization for Pudendal Education

It is time for me to move on. I will just recap below some of the things that helped me. I suffered for 11 long years and I had 2 failed PNE surgeries but I recovered 100% from debilitating PNE pain by doing mind-body exercises.

My recovery time with the mind-body technique was roughly a year. I had to quit my job as an executive at a fairly large publicly-held company due to PNE. I was out of work for 5 years. I am back at work full time as I write this. I do not have any PN pain anymore. I sit as long as I want and travel internationally once again. I am an engineer by training and I was not open to the mind-body connection initially. Yet, I eventually defeated chronic pelvic pain by doing mind exercises.

The pain is real. It is not in our *heads*. Our muscles spasm and squeeze the pudendal nerve, but it is the brain that controls our muscles. By doing mind exercises, you can indeed release muscle tension. The key is to work on negative emotions that are stored in our implicit memory (sometimes called the reptilian brain and physically located in the amygdala) and bodies.

Why negative emotions? We do know that pain and emotions are processed by the same area of the brain. You can read about it and there are several theories including from distinguished scientists such as Dr. Candace Pert (John Hopkins, NIH - Book: "Molecules of emotion"), Dr. Robert Scaer (Uni of Rochester- Book: "The body bears the burden"), Dr.Peter Levine (UC Berkeley - Book: "Waking the tiger") or Prof. Robert M. Sapolsky (Stanford - Book: "Why Zebras Don't Get Ulcers").

The following Pert interview is a good intro:
http://www.naturalworldhealing.com/emot ... erview.htm

A misconception is that psychosomatic pain is due to stress. The misconception is partially due to the book a headache in the pelvis. That is a fallacy. Stress will indeed start the pain cycle (it lowers your pain threshold), but that is not always the cause. One of the causes may be the fact that we cope indeed too well with stress and repress the negative emotions associated with it.

In short you have to reconnect with a lifetime of repressed negative emotions. By definition they are repressed so you do not know what they are, you can only guess. What we are feeling on the surface is irrelevant. What is relevant is what we are NOT feeling and are repressing from our consciousness. We can be happy and fulfilled people but below the surface (and 100% unconsciously) we may be repressing our fear of aging or death for example.

The following video was a great source of inspiration for me and a good introduction to negative emotions as a culprit of chronic pain.
The video is made by Dr. Eric B. Robins MD, a board certified urologist and surgeon that practices at Kaiser Permanente Medical Center in Torrance California. He is a believer in the mind-body connection and cured his own back pain.

http://youtu.be/Au4QnLXvBIM

Some good resources I found are from mind-body coaches that work with patients and are the following:

Monte Hueftle:
http://www.runningpain.com/important_tms_updates

Pay attention to the "Sitting with your Feeling or Emotions" paragraph.

I also highly recommend Abigail Steidley's free ebook "The Key to Your Healing Journey":
http://abigailsteidley.com/

Abigail suffered from pelvic pain and cured herself.

What they wrote helped me clarify what it means to connect with emotions. It is short and it is a very good reference. It is all I needed to get cured.
As a disclaimer, I have never contacted Monte or Abigail. I recovered completely by myself.

TMSwiki and TMShelp are 2 forums dedicated to mind-body. While it is interesting to go searching for information, I would advise against participating to those forums for very long. While you participate to forums or research information on the internet, you are distracting yourself and not healing. If you want to heal using the mind-body technique you must work on your emotions and stop searching for answers.
I am also skeptical of the numerous structured mind-body programs (Schubiner, Schechter et al.). It is too constraining for me but YMMV.

If you go to the TMSwiki or TMShelp, you will notice that those forums promote Sarno's ideas. Sarno believes that repressed negative emotions are the cause of most chronic pain. So far so good, but he then says that by simply being aware of the mechanism, you can heal. That did not work for me and for many others (maybe it worked before the Internet when there was no access to a plethora of conflicting information). Monte or Abigail start from Sarno's postulate but advocate to work on emotions directly. I agree with them.

In any case, the way is to be 100% dedicated to your recovery and not be distracted or discouraged. You should first get examined by a doctor to make sure that you do not have an obvious medical problem that explains your pain.

The only maintenance I do now is that I am mindful of my emotions in my day to day life. I experience my emotions (emotions are a physical sensation in reaction to a thought) instead of repressing them.

This is my How-to feeling emotions. That was my key to a pain free life.

Feeling our emotions is a way to release our repressed negative emotions. Those trapped unconscious negative emotions are what is keeping us in pain. We constantly repress our emotions as polite and well behaved human beings that have to interact socially.

1. Be mindful of any upset or conflicting human interaction during the day. Alternatively, if nothing comes up, find an upsetting or disturbing event in your past like during your childhood.

2. Once you notice an event, ask yourself what negative emotion you are feeling: ex. disrespected, ignored, lonely, depressed, frustrated, anxious, fidgety, powerless etc.
Following is a comprehensive list of negative emotions that may apply:
http://www.pudendalhope.info/forum/view ... 100#p46100

3. Feel the emotion. DO NOT THINK ABOUT IT. Simply feel it. Feel the negative emotion and how it is affecting you. You should experience a body sensation. A shiver. A cold sensation. Or pelvic floor release in my case...

4. Resist the urge to avoid the feeling. Your brain will do its best to make that experience stop. You will procrastinate. You will have something more important to do etc. Persevere.
To be with your emotions is not a comfortable experience. Be with the feeling and especially do not think. Thinking will simply re-traumatize you. Don't analyze. Be with the experience. Simply observe.

5. You are done. Go back to 1. Do it as much as possible.

Beware of false emotions like anger. Anger is a protection mechanism and you are repressing your emotions by being angry. We almost always feel something else first before we get angry. We might first feel afraid, attacked, disrespected, trapped etc. The emotions we are repressing while being angry are the ones above (afraid, attacked, disrespected, trapped, etc.)

"It's time for me to move on" I assume you are leaving the forum and getting with you pain free life. I wish you all the very best, I am going to re-read your threads on this. I am from the UK where treatment of this problem is far far more conservative than the US, as we have the NHS everything is free rich or poor the Pudendal surgery is not on the NHS as it is deemed a very poor outcome, so you are sent not to physio and pain psychologists. I have had this since February this year and about 80% better some days are now 95% pain free and I can sit for a reasonable time now, although my life doesn't involve much sitting anyway. I stopped physio about three months ago as I realised that was making me flare, I have really concentrate on dropping my pelvic floor and breathing, it comes automatically now, sorting my head out from my childhood now that's the real challenge, if I could find an inner peace from that I would be happy.

All the very best to you.m

I would like to wish you well too Ezer - thank you for your recent pms to me - you have given me a whole new way of looking at how to heal from this pain.

Violet is losing a valuable member of this forum.

Rosemary X

Bertie and Rosemary, thank you very much.

Bertie --regarding the events around your childhood, it is where it is key to feel your emotions and not think about them. Thinking will make you upset and you will not resolve anything. It can make things worse. On the other hand if you just feel those negative emotions without thinking, you dissolve the negative energy around them. You need to re-experience those emotions viscerally. Not intellectually. Simply as an experience. For example, if you were humiliated feel the blood rushing to your head when that happened, the blushing, the cold sweat, or the queasy feeling. You are looking for a physical reaction. Again an emotion is a physical reaction to a feeling. I hope I am being clear enough.
Of course, if it is too disturbing, I am afraid that you need professional help.

I understand that it all sounds very bizarre. But to experience complete pain relief for minutes then hours and eventually days was a powerful and liberating experience. I was contemplating a bleak future. There is no hiding the fact that I got frustrated by the disbelief that my posts generated but I can understand why. Eight years ago, I saw a doctor (for an infection) while travelling that asked me about my health in general. I mentioned PNE and he brought up the mindbody connection and Sarno. I was deeply offended!!

In many ways receiving that prized PNE diagnosis is a terrible thing because it becomes a mental prison (or safe haven? Otherwise why are patients so attached to their PNE diagnosis?) and you will then resist contemplating other avenues for healing.

One last thing: You may think that I am experiencing a delayed cure from my surgeries. It is really not the case. If I have an emotional trigger, the PN pain can come back for a couple of hours. It is as bad as ever.

emo·tion (Merriam-Webster)
A conscious mental reaction subjectively experienced as strong feeling and typically accompanied by physiological and behavioral changes in the body.

Ezer, you have been a valuable member to this forum. I am sure it was a difficult decision to move on but obviously it is time for you to do so. Thank you for all the input you have given to this forum. Continued happiness, peace and success as you define them, is my prayer for you.

Thank you nyt. You were very supportive after my failed Dellon surgery and I really appreciated our correspondence during that tough period.

You rock, Ezer! Thank you for your many contributions to this group over the years. I also appreciate the information on mind-body practices to ease and eliminate pain. I have been practicing ever since you told me about your success, and find that telling my brain I am not in pain (over and over if I must) has been effective. Not consistently, but when the pain hasn't accelerated too far. There are times when I am stressed that it doesn't seem to help much, but I am able to find the reason I am feeling pain. (As you describe it, an "emotional trigger.") For example, I had a yearly exam with my gynecologist last week, and while in her office my pain escalated - I know it was due to my apprehension not only of the exam, but just from being in a doctor's office. There have been too many traumatic experiences in doctors' exam rooms, clinics and hospitals...
Also - I am not sure how IC (interstitial cystitis) fits into this. When my bladder is hurting I am not able to change it.
As you know I do have an intrathecal pain pump which drips mostly an anesthetic (marcaine) into my spinal fluid, which numbs my pelvic area. I believe this has interrupted the pain signal - giving my brain a break, so to speak. So I think of my pump as the "big guns" needed since my pain was so entrenched after 20 years. It had become an internal manifestation of CRPS. While that has restored me to a life worth living (!!! ), I am interested in pursuing further, hopefully permanent relief. I will let you know how it goes!

This has been helpful for me also along with the restorative exercises. Thank you for posting your experiencing and all the helpful links.

Rivahgal

This is a very interesting thread, Ezer.

You mention Sarno. Many men at my forum have also turned to Sarno's ideas, which are a more abstract than those of Dr Wise, yet seem to work better for patients whose pelvic tension is more emotional than stress related. In my case, a very stressful job brought on my pelvic pain. I did not have deep emotional reasons for tensing my pelvis, I had pure, unadulterated stress (tight deadlines, hundreds of phone calls, unrealistic demands, work overload, literally sweating with stress). Once I ditched the work, took a loooong holiday, and used internal massage, I improved dramatically. However I can fully appreciate how pelvic pain can result from the repression of emotional responses. It's a different way into the same physical state. I thank you for explaining that here. It helps me to understand why a percentage of people do not respond to the Wise Anderson Protocol.

I would welcome you posting this same information at my forum (no joining fee, just use Ezer as a username).

I hope you are able to see that David Wise is doing something similar to what cured you, although he targets patients in a way that does not always work well for patients with emotion-based tension. This has not been fully explained before at the forum, and I would like to see it discussed.

[Edit: Ezer has replied to me in a private message]