Welcome to HOPE - www.pudendalhope.org

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Welcome to HOPE - www.pudendalhope.org

Postby Mod4 » Fri Sep 17, 2010 9:20 pm

The Directors of HOPE would like to welcome you to our new forum.
As we are in our infancy we would ask that you bear with us, we will provide you with a full explanation as to why we have had to take this step.
We just want you to know that we are a dedicated TEAM of people from many continents Worldwide who have been working very hard to form and secure this Organisation for many years.
We will do our level best to build this site to be the very best one available for HOPE and Help for information regarding Pudendal Neuralgia.

Thank you for your patience.

The Board of Directors of HOPE
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Re: Welcome to HOPE - www.pudendalhope.org

Postby GraceUnderFire » Fri Sep 17, 2010 11:27 pm

Looking forward to the explanation. Thank you :) Wouldn't want to go anywhere that Violet wasn't around to give her amazing information and wonderful support :)

Blessings,
Grace
Woke screaming from ab hyst 6/08
Diagnosed w/PN, ilioinguinal & iliohypogastric neuralgias 1/09
3 PN blocks w/Dr Quesada
Rt side TIR, ilioinguinal neurectomy & vestibulectomy 5/09 Dr Conway
Left side TIR 2/10 Dr Conway
Potter MRI 9/10 and consultation w/Loretta & Dr Hibner 12/10
Bilateral ilioinguinal, iliohypogastric, genitofemoral release w/Dr. Hashemi Aug 2011 left & Sept rt
Bilateral TG surgery w/Dr. Conway will be in January 2012
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Amanda » Fri Sep 17, 2010 11:31 pm

Grace Welcome to pudendalhope.org

Violet is here to offer her valued and experienced opinions and thoughts....she is a veteran of PNE and we value her very much.

Amanda
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Emily B » Sat Sep 18, 2010 1:25 am

Hello. I'm here too. Looking forward to understanding what happened. I don't know much about moderators and such. I just hope that we'll all still have access to the wonderful information we have in the past. The forum is my lifeline for information and support. Thanks for working to put this new one together and not just leaving us all in the dust.

Emily B.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Celeste » Sat Sep 18, 2010 2:26 am

Anxiously waiting to understand what just happened.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.

I am cured. I hope you will be, too.

There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.

http://www.tipna.org
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Violet M » Sat Sep 18, 2010 4:10 am

Hi, Violet checking in here.

Without all of the PN community posting information our organization is nothing. Thanks to all of you for hanging around and being there for all of our new members. We couldn't do it without you.
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: Welcome to HOPE - www.pudendalhope.org

Postby HerMajesty » Sat Sep 18, 2010 4:29 am

Hey you guys definitely have my loyalty; guess you were running the nonprofit message board off of somebody else's domain name?
I hope this works out and grows. Whole thing is kind of a bummer.
Meanwhile, I just checked on the other site oo and it is "off-line temporarily"...to be continued, or not???
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Quilter 2 » Sat Sep 18, 2010 2:49 pm

Hi Guys;
Thank-you all for being there. Most of the time, I don't understand "threads" and all the other computer lingo, but someone is always there to help set me straight :lol:
The work you have all done is amazing and I bet, has kept a lot of us from just throwing in the towel. That alone, deserves a major THANK-you.
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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Re: Welcome to HOPE - www.pudendalhope.org

Postby Karyn » Sat Sep 18, 2010 2:57 pm

To the Directors and Moderaters of HOPE (past and present):
THANK YOU SO VERY MUCH for providing us a safe, informative and supportive place to come to. I sincerely appreciate all the hard work you've done to keep this going. I'll admit to being devasted when I tried to access the pundendal.info site the other day, but I'm so grateful that you didn't just leave us hanging. The forum has been a life line and a wealth of information for me. The work you've done and are continuing to do is so very important! Thank you! Thank you!
I'd also like to throw out a special HUGE thank you to Violet and Celeste (not a moderator, I know!) Violet and Celeste are not only major contributors with veteran status, but also continue to provide support and insight to all, even though they've had remarkable recoveries from PN. With that in mind, I think it's remarkable and selfless of both of you to stick around in an effort to help others.
Group hug to all members of the pudendal.info forum! You're all very brave and I hope to be able to reconnect with you here at HOPE.
With the utmost respect,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: Welcome to HOPE - www.pudendalhope.org

Postby A's Mommy » Sat Sep 18, 2010 4:36 pm

I also want to send a heartfelt thank you to the creators and moderators of HOPE.

I just got off the phone with a fellow forum member and this thought crossed my mind so many times: WE NEED TO STICK TOGETHER. We are all here for the same reason: we want cured of this horrible disease/illness that affects us so much in EVERY aspect of our lives; our work, our finances, our marriages/relationships, our children, even our faith.

I admire and THANK those of you who have been helped/cured by the PNE treatments and/or surgeries who are STICKING around to help us who are still on our journey to recovery.

To all: continue to post, lets get the word out on PNE, and make all the difference we possibly can. One thing that PNE hasn't stolen is our MOUTHS or our PENS. We can speak and we can write about it. Let's do it.

All the best to my dear friends on this forum,

A's Mommy :)
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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