post-op PNE success

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Re: post-op PNE success

Postby Stephanie P » Sat Apr 27, 2013 6:21 am

Hi Aaron,
I'm another one from way back, who remembers your father's postings and followed your story, and was encouraged and moved by both. In those days there was so little to go on and the options were so limited (still are, really) that your father's informed 'sharing and caring' was a huge help to me. And now here you are, getting with your life yet, understandably, still trying to rationalize the path your life took. I'm sure this forum, and all the support that's available here, will help you in this.
Very best wishes, Stephanie
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
Stephanie P
 
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Re: post-op PNE success

Postby aaron_m03 » Mon May 06, 2013 11:26 pm

I apologize for taking so long to reply. You guys are my support system and I need y'all. It is just so relevant and close to home.

I know you can help me but talking about experience makes the trauma worse and makes me more aware of something that is maybe best ignored? The trauma stops me cold, and my body becomes more aware of pain because I am consciously more aware of it and think of it more. It brings me further (deeper) into this post-trauma state and its scary but I got this. What the mind believes, the body follows, I believe, as in meditation. Calm mind = calm(er) body.

I find the more I speak about pne stuff and acknowledge my own pain, the more aware I am of my body and the pain that still is there that I just want to not think about. I actually am finding that the less I talk about it, the better I feel physically and emotionally. But that cant be right can it!? Doesn't sound the healthiest way to deal.

It's frustrating that all I want to do is talk with y'all but I cannot at the moment! Well, I am now so that's positive.
Thank you for listening

Best wishes of comfort,

Aaron
aaron_m03
 
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Re: post-op PNE success

Postby Violet M » Tue May 07, 2013 4:48 am

I completely understand, Aaron...I've been there.

What you are saying makes a lot of sense. I know one PNE patient who is having success from following the advice in a book called "The Hidden Psychology of Pain." It's the advice of an Australian Psychologist specialized in PTSD who cured himself after 18 years of pelvic pain. Part of the treatment is to retrain your brain not to think of the pain. http://www.amazon.com/The-Hidden-Psycho ... 1452506809

We're here if you need us.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Re: post-op PNE success

Postby Jackel » Sun Jun 23, 2013 3:05 am

Hi Debbie,

Sorry for all of the following questions, but I have found that PT only worsened my symptoms. I was seeing a pelvic specialist who did trigger point release and gave me exercises so I was wondering if I need to find another PT. Did you find dry needling or cupping helped? How often did you see the PT?

Thanks, I'm a woman getting a little desperate finding ways around a surgery that doesn't seem very promising. I have seen Dr. Hibner who suggests surgery.

Jackle
11/09 awaken with sharp left-sided perineal pain after prolonged sitting & shoveling. MRI, Colonoscopy, biopsy all nl. 3 TG PN blocks relieve pain for 6 hrs each. After PT, PGAD develops. 2nd bout of PT increases pain. 2nd MRI of nerve is nl. 3 Botox injs are of no help. Can sit no longer. Researching surgery.
Jackel
 
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