Suggestions Please......!!!

Up and coming news about new ideas, new forums, and other suggestions that we plan to implement in the near future
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Mod4
Posts: 2655
Joined: Tue Aug 31, 2010 4:20 pm

Suggestions Please......!!!

Post by Mod4 »

As we are in the start up of this Forum we would welcome any input and suggestions from members.
As of tonight we have discovered that we cannot send emails and some settings for PM useage.
We are working on this matter and will try to resolve same ASAP.

If you have any ideas we would love to hear about them.
GraceUnderFire
Posts: 115
Joined: Fri Sep 17, 2010 1:57 pm

Re: Suggestions Please......!!!

Post by GraceUnderFire »

I am not sure what anyone could do regarding this, but I thought I would throw it out there . . . I am so disheartened by what seems to be literal arguments and just plain nastiness that has been going on on some of the other forums. I have a pretty thick skin, but I know there are others who do not and would leave rather than try to wade through all the negativity for any potentially helpful information. Again, I don't know how anyone can do, but it is very sad that it happens and I hope we do not see it here. Thank you for all you do and thank you for listening :)

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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Violet M
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Location: United States
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Re: Suggestions Please......!!!

Post by Violet M »

Grace I agree with you on this. I think it's fine to discuss differences in opinion on ideas and issues but there is no place for personal attacks. Since all of the moderators are volunteers there may be times when we don't get offensive items removed immediately but we will do our best to try to keep the nastiness down.

What does everyone think of the idea of having a specific section of the forum for people who want to engage in a vigorous debate -- not name calling but vigorous debate?
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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Celeste
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Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: Suggestions Please......!!!

Post by Celeste »

I think it would be really good to have a place where each person who has had surgery can post their end result, possibly a Sticky in the Case History section, with a thread for each doctor. So often we see people come to the forums and want to try to gauge how satisfied or not a person is with a given doctor or surgery, and then the person has to rely on input from the collective, which may not be fully representative.

I think that the time is right to start collecting this information. I feel like it's just too hard for new people to wade through a loaded site to figure this out for themselves, and maybe it's too much to ask of forum members to tabulate this information and disseminate it on demand. Each member would only have to do one post one time, and we could possibly build something that would be useful for patients to come.
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
Emily B
Posts: 186
Joined: Sat Sep 18, 2010 1:21 am

Re: Suggestions Please......!!!

Post by Emily B »

Hi. I noticed the DONATE button isn't available yet?

Emily B.
pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: Suggestions Please......!!!

Post by pomegranate »

I'm with Celeste--love the idea of a sticky results thread.

It is hard to wade through all the other information on other/previous forums to try to find a person's end result.
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
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Amanda
Posts: 450
Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
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Re: Suggestions Please......!!!

Post by Amanda »

Thank you everyone for their very good suggestions.
Celeste your idea is something we had not thought about until now, I will work on instigating this in the coming days.

With everyones help and input we will make this site and forum a great place....thank you.
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.
Emily B
Posts: 186
Joined: Sat Sep 18, 2010 1:21 am

Re: Suggestions Please......!!!

Post by Emily B »

Wanted to let you know that when I initially went to the home page, I had a hard time finding the forum button to click on. Maybe a click-able forum button on the left side of the page menu might be good?

Thanks for all your hard work on this. I don't know what I'd do without this forum. I sure hope everyone finds their way here.

Emily B.
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Violet M
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Location: United States
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Re: Suggestions Please......!!!

Post by Violet M »

Emily B wrote:Hi. I noticed the DONATE button isn't available yet?

Emily B.
The donations button is available now. You can use a credit card or your paypal account. According to paypal a tax deductible receipt with the name of the organization on it is generated automatically and sent to the e-mail address that you provide -- but it could go to your spam box so you may have to watch for it. If you don't receive a receipt and you need one, please let Violet M know.
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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GregT
Posts: 135
Joined: Mon Sep 20, 2010 6:51 am

Re: Suggestions Please......!!!

Post by GregT »

GraceUnderFire wrote:I am not sure what anyone could do regarding this, but I thought I would throw it out there . . . I am so disheartened by what seems to be literal arguments and just plain nastiness that has been going on on some of the other forums. I have a pretty thick skin, but I know there are others who do not and would leave rather than try to wade through all the negativity for any potentially helpful information. Again, I don't know how anyone can do, but it is very sad that it happens and I hope we do not see it here. Thank you for all you do and thank you for listening :)

Grace
Oh, Grace. Out of "nastiness" sometimes comes better solutions. Sometimes we have to "duke it out" a bit, no personal attacks, but be firm in our beliefs based on our experiences and on the many experiences that we know that people have had. I've been in the middle of argument many times and while some people don't like to see it, if it's important enough to lead someone in the right direction and away from the wrong direction (and there are right and wrong directions which people can take), then I'd say we put up with a little of the nastiness, as you call it, as long as people maintain a respectful tone towards others. It's like having a problem at home and deciding to ignore it because it might be painful to work through it. If you confront problems, you are all better off in the long run.

I guess we might have some disagreement on what is and what is not "nastiness". You refer to "the other forums" which is obviously tipna I'm guessing. I think that things are generally very tame over there. I have personally touted this new website to our members, asking them to come here rather than to pudendal.info. I have confidence in the moderators of this site that they'll know the difference between people just being butts and people actually engaging in thoughtful disagreements.

Greg
Had surgery in Nantes, France in 2001 with Professor Robert. I advocate physical therapy with PTs who specialize in the pelvic floor. I also advocate injections to help diagnose PN and I am in favor of having PN surgery to release the nerve when the diagnoses points to an entrapped nerve.
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