New member to Hope Old Member of info

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
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knitwit
Posts: 24
Joined: Sat Oct 01, 2011 3:49 pm

New member to Hope Old Member of info

Post by knitwit »

I think? - It has been way to long since I have posted, and I can't even remember my old posting "name" ---but, I am new to P.hope. I had surgery with Dr. Conway, several years ago - to no avail. I am always on the lookout for new more exciting ideas about treatments for PNE rather than another surgical one. Recently a friend of mine gave me a book called "The Brain that Changes Itself" by Norman Doidge. It is a way to trick the brain into thinking the pain is not there, through a technique they call "brain mapping". I am quite excited about the field and have been reading non-stop about it....... has anyone else heard about this? I know "guided imagery" and biofeedback are a sort of re-vamping of the brain, but this goes much deeper.....
if you cut and paste this to your browser you should be able to read one of many articles on it. http://www.howtocopewithpain.org/blog/3 ... treatment/ ==== knitwit !!!
knitting keeps me sane!
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Violet M
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Re: New member to Hope Old Member of info

Post by Violet M »

Hi KN,

Well, it doesn't seem right to call you by your full username so it's KN if that's OK with you.

I don't know much about brain mapping but I've made your link into one that hopefully won't expire. http://tinyurl.com/3ljq6eu

Good luck with this new therapy and please let us know how it goes for you if you try it. ;)

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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helenlegs 11
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Location: North East England

Re: New member to Hope Old Member of info

Post by helenlegs 11 »

Very interesting KN, I will definitely read up on it. What did Dr Conway find when he operated? Did you improve at all and then the symptoms came back. Sorry you haven't felt the benefit from this surgery and hope this new technique works for you.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
knitwit
Posts: 24
Joined: Sat Oct 01, 2011 3:49 pm

Re: New member to Hope Old Member of info

Post by knitwit »

Thank you Violet for re-vamping that URL, it's a really neat site! - Helen, I had left sided entrapment, which Dr. Conway used the TIR approach on, or really the vaginal approach and tried to bring my entrapment down to a 2.4 if I remember correctly? Oh, it's been so long I can barely remember. I had follow up P.T. and the pain just never relented. So hear I am. I still pursue pain treatment, in any way shape or form. - Josie (remembered from the old forum!!!)
knitting keeps me sane!
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Violet M
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Post by Violet M »

Oh wow! Josie, is that really you? I remember you from the old forum! I'm sorry that you are still around with us due to pain though. Are you aware that Dr. Conway is doing the TG approach now? There are other new developments in the PNE world too so I hope you will find time to read through the forum a bit and see what's new out there.

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.
knitwit
Posts: 24
Joined: Sat Oct 01, 2011 3:49 pm

Re: New member to Hope Old Member of info

Post by knitwit »

Yes, Its me! I have been out of the picture, new grand baby will do that to you! oh how I love him - HA! Yes, I am trying to read the sight as much as possible, but it seems
I have been busier than ever. In a good way, despite this blasted pain!
knitting keeps me sane!
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Violet M
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Re: New member to Hope Old Member of info

Post by Violet M »

Hey Josie, I'm jealous of you with that grand baby. haha I guess there couldn't be anything better to keep your mind of your pain. I do wish you were cured by now but hope you will find some answers here. ;)

Take care,

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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