Why have we moved? Explanation

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Re: Why have we moved? Explanation

Postby HerMajesty » Wed Sep 29, 2010 3:16 pm

ARE some people viewing the board over there? It still shows up as "temporarily off line" to me. Does that mean I was blacklisted or something?
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: Why have we moved? Explanation

Postby Celeste » Wed Sep 29, 2010 3:23 pm

KRISG wrote:HI all,

It was not Richards work you know but ours . :lol:
We still could alter some pages as Richard forgot to lock us out there too.
Thats all...

But it is better then nothing ...now some people know where to find us ...even if it is for a few days maybe..

Kris


Fortunately Tipna stayed up and the link is there; a lot of people had membership there too, so there was a place to be while this gets sorted out. Good thing Greg didn't fold his site upon Richard's request last year--it could have been extra ugly for the patient population.

The weekend that this happened, I saw on Facebook a new PN group opened by a man in Vancouver with a tagline, "I'm not a doctor but I've helped a lot of people with PNE". I wondered if it was Richard and he was trying to start an offshoot. Hopefully nobody will fall for it if so.
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: Why have we moved? Explanation

Postby Violet M » Thu Sep 30, 2010 6:11 am

HerMajesty wrote:ARE some people viewing the board over there? It still shows up as "temporarily off line" to me. Does that mean I was blacklisted or something?


No, the board/forum is offline. We are all locked out of the pudendal.info forum. The information part of the website with the FAQ's and homepage are still viewable and the directors of HOPE were able to access it to post the announcement of our move.
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: Why have we moved? Explanation

Postby bindy15 » Mon Oct 04, 2010 10:26 pm

Violet M wrote:Wendy, my dear friend -- there aren't very many people who have given more to the PNE community than you....... :P



Just want to second that statement Violet ..

Also to say a huge welcome back to Amanda who I first hooked up with and 'depended' on 5 years ago.

And thanks a million to Violet who has been the rock to us all.

You are all fantastic ... and yes I miss you on here Wendy but I am so happy that things may be better for you !

Jude
PNE from cycling. Surgery with Prof Vancaillie, Sydney Australia 2008.
Very much improved
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Re: Why have we moved? Explanation

Postby Amanda » Mon Oct 04, 2010 10:46 pm

Welcome Bindy

Its so nice to see you again, im sorry that we lost touch via emails as I was always fascinated by your tales. I would be happy to email you again just send me a pm with your current address and we can pick up where we left off.

Our site has been the culmination of many hours, days and weeks of hard work but we have always been totally dedicated to keeping a site going so that PN community can have a good place to communicate...we just hope that we have provided this and any suggestions are very welcome to make improving standards to make this the best site.
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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