Pudendal Nerve Entrapment...

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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Pudendal Nerve Entrapment...

Post by ezer »

Rosemary,
Many programs in mindbody healing are targeted to women. Just as an example, Lernica mentioned Lorraine Faehndrich:
http://www.pudendalhope.info/forum/view ... f=3&t=5442
That program is only open to women.
http://radiantlifedesign.com/
Healing Female Pain: The Mind Body Program for Relieving Vulvodynia and Chronic Pelvic Pain

There are several other programs for pelvic pain targeted to women:
http://abigailsteidley.com/
http://www.gailkennylifecoach.com/

You may want to look also to Lissa Rankin MD. She has many articles on the subject because she has suffered from pelvic pain:
http://www.psychologytoday.com/blog/own ... our-health
http://www.owningpink.com/blogs/owning- ... lf-healing

There are many non-gender specific sites like the one from Dr.Schubiner MD:
http://www.unlearnyourpain.com/index.php

I did it on my own and never participated to any program so I have no experience. But maybe you can PM Lernica.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Pudendal Nerve Entrapment...

Post by Violet M »

ezer wrote: But can you explain why is KrisG pain free? He was diagnosed twice with PNE and did not have the surgery. He should still be in pain by that same logic.
Also why am I pain free if negative emotions are just psychobabble?
Maybe KrisG never had a nerve entrapment and his nerves were able to heal over time. My understanding is (and we have said this many times on the forum) that it is difficult to definitively diagnose an entrapment. So if any doctor tells you that you are definitely entrapped you should question them as to how they know for sure. Some of the surgeons say that you can't tell for sure until you go in for surgery. That's why I think that people shouldn't try surgery unless their pain is severe and they've tried everything else without success. Kris said he only had pain with sitting. If he had asked what I thought when he was considering surgery I most likely would have said don't do it. If you can be pain free when standing and lying down it would be unwise to risk having surgery. I had pain 24/7 in all positions and had great difficulty sleeping so I felt like I didn't have much to lose.

Ezer, I think your protocol was the right thing for you but just like surgery isn't the right thing for everyone, neither is getting in touch with your negative emotions going to cure everyone. I wouldn't cross it off the list as an option because when we're dealing with an illness as difficult as PN I think we have to keep all options on the table.

BTW, I know people with PTSD who don't have pain so I wouldn't put all of them into the same box like your neuropsychologist is doing.

I can't say for sure why you are painfree since you had 2 surgeries and you've also tried other things. I can't prove for sure that surgery is what healed me. We can only make our best educated guesses.

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.
Andy_Pablo
Posts: 157
Joined: Sat Oct 11, 2014 10:27 pm
Location: Devon, England

Re: Pudendal Nerve Entrapment...

Post by Andy_Pablo »

Hi Violet, how long after your surgery were you 99% pain free?
Credula vitam spes fovet et melius cras fore semper dicit...
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Violet M
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Location: United States
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Re: Pudendal Nerve Entrapment...

Post by Violet M »

Hi Andy,

I started going off narcotics 9 months after surgery but I couldn't count on a good day until about 18 months post-op and that is also when I started sitting more.

My signature says I am 99% cured of PGAD (one of the symptoms of PN) but as far as pain goes I am fine as long as I am careful not to do anything that jars the pelvis too much since my ligaments are still not in a perfect state. I can do light yard work and light weightlifting/workouts but no jogging or heavy lifting. I can work and live a fairly normal life without pain medication. It's hard to put a % on it but I can say that most of the time I don't think about PN pain anymore. I can sit for hours at a time at work now -- and at my computer.

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.
Blossum
Posts: 25
Joined: Mon Oct 06, 2014 7:30 pm

Re: Pudendal Nerve Entrapment...

Post by Blossum »

Hi Violet
What about inside the house? Are you able to cook meals, bake, clean, vacuum etc... without causing a flare or do you need some assistance? Can you carry a heavy laundry basket now or does that trigger some nerve pain?
I am slowly starting to clean the washrooms, do some baking and it is not irritating my nerve at all, so that is hopeful. I can also wash my floors but not on my hands and knees!
Just wondering how you are getting along after so many years after surgery with the normal household chores.

Blossum
PNE since 2011, started from a routine gynecology surgery. TG surgery Dr Hibner 2013..... Nerve pain improved.
Susanjane
Posts: 35
Joined: Mon Sep 20, 2010 6:04 pm

Re: Pudendal Nerve Entrapment...

Post by Susanjane »

Andy_Pablo

During my journey to better health, I liked to read a few inspirational books – not ones which would offer solutions necessarily, but which at least lifted the spirits and offered food for thought. Even though I’m a 60+ female, one I particularly enjoyed on many levels was ‘Teach us to sit still (A Sceptics Search for Health and Healing) by Tim Parks. Plenty of info about him and his books on Amazon/Youtube if you’re interested.
Rosemary
Posts: 309
Joined: Mon Dec 31, 2012 5:40 pm

Re: Pudendal Nerve Entrapment...

Post by Rosemary »

Susanjane wrote:
one I particularly enjoyed on many levels was ‘Teach us to sit still (A Sceptics Search for Health and Healing) by Tim Parks.
I will second this - i had read Tim Parks books on Italy beforehand so knew him as an author - his humour lifted me.

Rosemary
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Pudendal Nerve Entrapment...

Post by ezer »

Tim Parks offers an alternative healing path that worked for him.

I enjoyed recently "You Are the Placebo: Making Your Mind Matter"
http://www.amazon.com/You-Are-Placebo-M ... 1401944582
The premise is that if you believe 100% in a treatment no matter what it is, you will get better. Very intriguing.

Susanjane, you allude to a healing journey. I would be very interested to hear about it.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
User avatar
Violet M
Posts: 6679
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: Pudendal Nerve Entrapment...

Post by Violet M »

Blossum wrote:Hi Violet
What about inside the house? Are you able to cook meals, bake, clean, vacuum etc... without causing a flare or do you need some assistance? Can you carry a heavy laundry basket now or does that trigger some nerve pain?
I am slowly starting to clean the washrooms, do some baking and it is not irritating my nerve at all, so that is hopeful. I can also wash my floors but not on my hands and knees!
Just wondering how you are getting along after so many years after surgery with the normal household chores.

Blossum
Blossum, it's great that you are able to do some household chores now. 8-)

Household chores are no problem for me now. I also work out with light weights and I do yardwork although I have to be careful not to lift heavy items. Before surgery it was a huge challenge just to cook a simple meal.

I think things will continue to get better for you but please do be careful and don't try to take on too much at once. ;)

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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