Health Organization for Pudendal Education

andy_pablo,

I am just trying to suggest that you look at this illness a bit differently. That's all.

In regards to fluctuation of temperature, I had that also. My right leg/foot (on the painful side) was colder than my left leg/foot especially in the evening. It is totally explainable by the mindbody connection. I also had discolored right foot. It is all gone. Anything connected to the limbic system can be a mindbody manifestation.

In regards to your personality that enjoys life and does not worry about things. It is conscious. I am talking about what is unconscious.
We all have a certain amount of negativity. You repress it or you express it. You choose to repress it. Again unconsciously.

It also does not gibe with your binge on drugs and booze after the breakup. This certainly does not reflect your persona.

Believe me I would not have submitted myself to 12 years of medical torture and experiments if I even remotely suspected that my pain was psychosomatic. I have piles of reports from experts describing my PNE diagnosis. I for sure thought something was very wrong with my pudendal nerve like you do.

Anyhow. I tried. Good luck with whatever route you choose.

Even if you don't think it applies to you, some of the mindbody concepts may be able to help you experience less pain and suffer less.
No matter what, it is your brain that decides how much pain you perceive. You can learn to turn down the dial.

Dont get me wrong mate I also attempt to meditate, albeit my ability to control it is still in its infancy. But I do try...

I applaud your enthusiasm & I am happy for you that you found something that works for you, that is also helping some others. Like I said, I was genuinely pleased that Dan was feeling well again.

Andy_Pablo wrote:Dont get me wrong mate I also attempt to meditate, albeit my ability to control it is still in its infancy. But I do try...

Nah, no meditation. I did none of it. It is much more subtle than that. The goal is to reconnect with your body. Pain and emotional trauma tend to dissociate you from your body. The more you dissociate, the more pain you perceive. Dr.Peter Levine, author of "Waking the Tiger", among many others has described it well.

It is not new age mumbo-jumbo. What the 20th century psychoanalysts somehow intuitively formulated is being confirmed by modern neuroscience. Western medicine is completely powerless in that regard: Freeze, inject, dissect, heat, shock, or transpose the pudendal nerve. Quite barbaric.

As for "six days bliss", I cannot explain that.

Exactly. Weird no?

After attempting to be pro-active testing out CBD oil, watching lectures on pain management, etc, I have been attempting to follow a regular pattern of being more actice with the thought that activity can help block pain signals, etc, but with the increased activity comes the sort of pain that makes you question yourself... So back to laying on my back unable to move & still having those horrific cold stabbing pains, along with lots of other types of pain & symptoms while I lay still... And all the while my recovery clock ticks down.

Wow, you sound miserable, Andy. I'm sorry the activity didn't work out for you. Can't remember -- do you take any medication for the pain or the stabbing pains? Or are you trying to tough it out?

Violet

I take Pregabalyn & Tapentadol. They help a little usually after things settle, but if I get a flare up they do not cover it. This flare up has been the worst I have had in a long time.

Hi Andy, I too have similar symptoms and have completely lost my life. Lay on my back or stomach a lot. Trying to get better but with no results yet. I sure hope we can beat this horrible thing. It is truly hell to have this. I hope you feel better

You too mate.

Hi Andy
How long have you had this? What is your age? Feel free to pm me if you like. I have been going crazy for what seems like eternity. Sometimes it can help to talk to someone who has a similar situation.

Hi Frank. I am 38. I sustained my injury in the summer of 2013. I had surgery in the summer of 2015. My issues have somewhat improved but it still an ongoing process. What about your good self?