Why have we moved? Explanation

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Why have we moved? Explanation

Postby Mod4 » Sat Sep 18, 2010 10:10 am

The Directors of HOPE would like to offer an explanation to members as to the reason why we have moved to a new website http://www.pudendalhope.org.

For many years the Moderators of Pudendal.info have been working hard to try to establish a non profit organisation which is called HOPE.
This stands for Health Organisation for Pudendal Education.

In 2009 we began our efforts and it was agreed between the Directors of HOPE and the Admin of Pudendal.info that we would join forces using the domain name of http://www.pudendal.info.
One of our primary goals was to maintain the website with updated information but for many years we were not allowed to add any updates. We felt that the PNE community deserved better. After a long period of time and great effort on our part to update PI it was arranged that Richard would transfer the domain to HOPE.
However this did not happen and despite Richard being a Director of HOPE – he failed to meet his responsibilities as a Director. He was not reelected in our AGM and therefore not a Director.

The next step in events was that Richard took back control and ownership of pudendal.info and also took away all administrative access from HOPE directors, including access to HOPE directors’ meetings, thereby making it impossible to continue with our original mission to merge the two organisations together.

Therefore we have decided that in order for HOPE to continue to run, with the best intentions of providing the most useful and up to date information for the PNE community we have created this Forum and website.

Some of us have been working on your behalf on the PI site for many years and it is with great regret and sadness that we have to make this move, however we will endeavour, in time to offer you a safe and caring environment with the most up to date information possible.

The Directors of HOPE
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Re: Why have we moved? Explanation

Postby hilary » Sat Sep 18, 2010 10:50 pm

Thank you for your explanation. You have obviously worked hard to make the very best of a difficult situation as speedily and comprehensively as possible and like every one else I can only say thank you for that.
My major concern is whether the postings from pudendal.info can be transferred and/or whether they will continue to be available on the old site for at least a year or so. As you know the forum is 'temporarily unavailable'. Most of us look back at postings we have noted and for new people some of the threads are truly informative and help people build up knowledge or even form an opinion as to whether they actually have PNE or not
I hope that an amicable agreement can be reached with Richard for the benefit of the community no matter where blame may lie for the unfortunate turn of events.
Does Richard perhaps intend to continue with the pudendal.info forum? If so, with Tipna, there will be 3 major forums on the subject which is really too many and can fragment good discussions. I know that at one stage Richard was trying to get Greg to close Tipna or combine it with pudendal.info but both Greg and the members of his forum were opposed to this.
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Re: Why have we moved? Explanation

Postby HerMajesty » Sun Sep 19, 2010 12:12 am

Good points Hilary, and I am even more concerned that, if the pudendal.info site does NOT either re-open or re-direct, people who visit the forum with some regularity but are not "every-day people", might lose access altogether. The notices and links were only up on the pudendal.info board for a day or 2 before it shut down. The people I see who have moved over here are the very regular posters. Many people in serious need of the forum seem to check in less regularly. I too am hoping an amicable agreement can be reached so that those people at least know what happened.
One thing all of us can do: I googled "pudendal neuralgia", and "pudendal neuralgia message board", and of course so far this site does not even show up on the 1st page. I already posted a link to this site, on the website I update for our nonprofit. Anyone with a website, or using any other message boards, etc, can post up a link to this site, which will increase its prominence in web searches. I am not too good at that kind of thing (can never even remember the technical term for it), so to those of you on the Board, if there is anything else we can do to increase your prominence on web searches please let us know.
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 Violet M » Sun Sep 19, 2010 5:09 am

HM and Hilary, these are all very good points. We are doing what we can to optimize our site so that search engines will pick it up. We have made a comprehensive list of frequently used words and tagged our site with them and we are putting up back links from other sites wherever we can. If any of you have ideas of sites where we can link to pudendalhope.org please let us know -- or go ahead and put up links to our site. This would help more than anything.
If you are a member on other forums, if you put links to http://www.pudendalhope.org/ it will help tremendously, for instance you could put it in your signature. Or if you edit your forum profile and put this link http://www.pudendalhope.org/ as your website that also helps.

If you can get your families and friends to go on google, bing, and yahoo, etc. and search for pudendal hope or http://www.pudendalhope.org/ it will help move this site up in the rankings.

I'm sorry, we have absolutely no control over the pudendal.info forum. We do not know why the forum is offline or what Richard will do with it.

Regarding coming to an amicable agreement with Richard -- believe me, we have tried -- because we had the exact same concerns you do about having too many websites to wade through. We feel that it is confusing to the PNE community to have to wade through repeated topics. For YEARS the moderators of pudendal.info pleaded with Richard to give us access to making updates on pudendal.info. Wendy and Violet finally opened up a new website (pudendalhelp.com) with updated information. Along with some of our current directors we started the HOPE organization. We thought we had come to an agreement with Richard and we paid his son to transfer the new information from Wendy and Violet's site to pudendal.info. We did everything we could to try not to disrupt the PNE community by starting up yet another forum. But it just did not work out. At this point, we can only do our best with this new website and new forum to continue our mission of helping people who are suffering from PNE. We are very grateful for the outpouring of support we are receiving.
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 HerMajesty » Sun Sep 19, 2010 3:19 pm

I was thinking that since some of us have accessed pudendalhelp.com in the past, It should have a front-and-center announcement on each page as to where the forum has moved. However, when I went to check to see if you had already done that, I could only access pudendalhelp by an old link I had in favorites. If I type into my browswer, "www.pudendalhelp.com" ,it redirects me automatically to pudendal.info. If you did that redirect yourselves, it needs to be changed to a redirect to this site.
As far as tags, I originally found the site specifically by searching pudendal terms along with "meassage board", and suggest you put in such tags as "pudendal meassage board, pudendal neuropathy meassage board, pudendal nerve entrapment message board", etc.
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 » Mon Sep 20, 2010 2:26 am

Greg put a notice about your site on Tipna, so maybe that will help redirect people who also visit that forum. Some of us also correspond offline with people we have met on these forums who may not be registered members, so there is that mechanism to redirect people as well. There is a PN group on Facebook, and I will check to see if they have the information. I hope that everyone who needs the resource will be able to meet somebody from the network, somehow.
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 HerMajesty » Mon Sep 20, 2010 3:18 am

There is also the "happy pelvis" yahoo group - will try to see if I can communicate with them
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.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Why have we moved? Explanation

Postby Violet M » Mon Sep 20, 2010 3:35 am

Thanks for your help Celeste and Hermajesty. I have contacted the person currently holding the domain name of pudendalhelp.com to see if they will redirect it here.
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 Celeste » Mon Sep 20, 2010 3:37 am

If anybody has a contact on the IC network, that would be a great resource as well.
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 HerMajesty » Mon Sep 20, 2010 1:46 pm

Personally Sunil, I am just happy you found the new one! You were one of the people I was most concerned would lose the site, and really need it.
There is a spot on the IC network message board specifically for PNE, and anyone who is registered can post the new link there. I am off and running to kid's school / work now, but will post it when I get back if no one else has. Did contact "Happy Pelvis" already.
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.
HerMajesty
 
Posts: 1151
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

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