Fact Sheet Hand Out for Medical Professionals

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catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Fact Sheet Hand Out for Medical Professionals

Post by catherine a »

Violet, the fact sheets don't exist any more. Where can I find the new version?

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Fact Sheet Hand Out for Medical Professionals

Post by Lernica »

That's curious! I downloaded them just the other day.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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catherine a
Posts: 291
Joined: Sat Sep 18, 2010 4:46 am
Location: Perth Western Australia

Re: Fact Sheet Hand Out for Medical Professionals

Post by catherine a »

Sorry Violet, must have been a glitch in my computer. I'm using my laptop today and it opened fine.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Fact Sheet Hand Out for Medical Professionals

Post by Lernica »

Hi folks,

I'm preparing an application for disability and would like to include (for the insurer's convenience) all the articles listed at the bottom of this handout. But when I look under Doc's Publications we have only two of the five articles posted there -- Labat's paper on the Nantes Diagnostic Criteria and Hibner's 2010 paper. Does anyone know where can I find the other articles?

Thanks. I'll be posting an update on my situation shortly.

All the best,

Lernica
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Fact Sheet Hand Out for Medical Professionals

Post by Lernica »

Anyone????
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Fact Sheet Hand Out for Medical Professionals

Post by janetm2 »

Lernica,
There are two other sites you can check to see if tgey have the publications:
spuninfo
Www.pudendal.com

The spuninfo has a resourses section that has publications. Hope this helps if you do not hear from someone about the listings for this site.

Good luck with the disability submission.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
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Violet M
Posts: 6593
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:
Contact Violet M

Re: Fact Sheet Hand Out for Medical Professionals

Post by Violet M »

Lernica, here is the link to Bautrant's paper: http://pudendalhope.org/sites/default/f ... utrant.pdf
Here's the one to the Houston team paper: http://www.pudendalhope.info/sites/defa ... ment_0.pdf
Here's Robert's: http://www.pudendalhope.info/sites/defa ... Robert.pdf
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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Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Fact Sheet Hand Out for Medical Professionals

Post by Lernica »

Thanks Violet! It might be helpful to post these on our collection of Doc Publications, no?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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Violet M
Posts: 6593
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:
Contact Violet M

Re: Fact Sheet Hand Out for Medical Professionals

Post by Violet M »

They are already there. You can go to this link: http://pudendalhope.org/node/25 or you can go to the home page and click on "See docs Publications". You will have to scroll down to find them and then click on the article you want.
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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donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Fact Sheet Hand Out for Medical Professionals

Post by donstore »

Lernica,
Good luck with your disability application. Let us know how it goes.

Don
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
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