Health Organization for Pudendal Education

Hi Celeste,good to see you here

We have now a technical way of doing on-line surveys at this board .That is the way I think we should make a survey that goes on for ever and where people can put down in a few questions how they are doing . A kind of the survey I did before but then with no ending and reported on a regular basis . Then we would as a new user see in a few minutes what the odds are because in the end ...lets face it ...we all are looking to get better . Of course even that is not at scientific thing and we must be careful when drawing conclusions ... I would like us to think through which questions we want to ask because if you want to make statistics the questions should be clear and measurable .. But I like the challenge,..
And we also could make the possibility for some who should want that to publish a blog . could be interesting if we could have a few members that would keep one before and certainly after surgery ...but that would be on the member itself and maybe we get other very long winded things then ...

Emily , I have immediately honoured your request !. Good point !

Hi Greg and grace
I agree that we should disagree sometimes to find the best solutions . Of course it is the 'tone' that makes the music .
Often someone can say the same thing on a positive and a negative way !. Lets indeed try here to say what we think but keep the message helpful to the other party.
Violet , as for the debate part of the forum. I do think that if you don't get personal and the message is positive ,helpfull and on to topic, (the topic here is PNE , not how Obama is doing )..there is nothing against difference of opinion .. It only makes you richer ! But we should watching out for negativism and off topic discussions .
So yes...if you are not helped you should be able to tell so ! But we should have respect for people that are helped at the same time .
Not every patient is the same , not every case it the same , not every stage is the same nor every emotion as a result is ..

And thanks Greg for your support to our new site !. I really appreciate it !

KRISG wrote:Hi Celeste,good to see you here

We have now a technical way of doing on-line surveys at this board .That is the way I think we should make a survey that goes on for ever and where people can put down in a few questions how they are doing . A kind of the survey I did before but then with no ending and reported on a regular basis . Then we would as a new user see in a few minutes what the odds are because in the end ...lets face it ...we all are looking to get better . Of course even that is not at scientific thing and we must be careful when drawing conclusions ... I would like us to think through which questions we want to ask because if you want to make statistics the questions should be clear and measurable .. But I like the challenge,..
And we also could make the possibility for some who should want that to publish a blog . could be interesting if we could have a few members that would keep one before and certainly after surgery ...but that would be on the member itself and maybe we get other very long winded things then ...

I remember your past survey. I was thinking of something that would essentially tabulate results by doctor. I was thinking about this the other day when I was looking online at hotel reviews for a trip. While you might like to use a certain chain of hotel (Holiday Inn), for your next trip you care most about the one in particular where you will stay. So while people of course need to decide on a surgical technique, it would be great if they could search for reviews by particular doctor. Will your survey mechanism allow this?

There are actually several pudendal blogs out there but most aren't updated frequently. Maybe we could have a thread in the social section where bloggers list their address for those who care to check out blogs.

I do invite anyone who enjoys social media to check out the Facebook PN groups. That can be a nice way of making real-time connections for support and sharing, with a little more comprehensive aspect than just logging into the forums. Something to think about for those who want to reach out a little more. Clearly the forums are plenty for some, but I just wanted to let this be known more widely.

Actually, Greg, I was not referring to TIPNA at all and I do not appreciate your condescension.

GregT wrote: Out of "nastiness" sometimes comes better solutions.

I'm not sure what you mean by nastiness. You can say the same thing 2 different ways -- you can say it nicely or you can say it in a mean way. We should really go out of our way to state things kindly on a forum where people are in pain searching for answers. Just my 2 cents.

A lot depends on a given person's response to conflict. Some will find it all unpleasant, others will think it's the only way to get to the bottom of something. Most people are somewhere in the middle, and will choose our battles.

I have seen some downright nastiness on other boards (and I have never been to TIPNA), but the pudendal.info site seemed rather immune to that. I really thought of it as a relatively nice polite site. I would rather not see a debate section because we are really here to provide support and information - there should be no need. I would rather see tight rules on how we address each other with respect, and moderator intervention in back-and forth nastiness, such as freezing threads or removing non-informative sections of argumentative posts. I say back-and-forth nastiness, because I did have a situation where I said something that was misinterpreted, and the other party responded angrily, and I clarified myself politely, and she responded politely. So I do think only ongoing nastiness needs intervention: generally we can work out our differences on our own with a reasonable level of maturity.

Please note that this thread was originally set up to look for suggestions so that we as the Moderators of this Forum could listen to your ideas and suggestions.
Along the way there have been some suggestions which we greatly appreciate but there have also been some non productive responses which have been hurtful and not very constructive.

I would like to remind everyone to read this thread which highlights our Code of Conduct and try to remember that as members of a forum dedicated to providing help and information about a very painful condition that we should try to show respect for other members and their own personal battle in living with this condition.

http://www.pudendalhope.info/forum/view ... p?f=3&t=24

HerMajesty wrote: have seen some downright nastiness on other boards (and I have never been to TIPNA), but the pudendal.info site seemed rather immune to that. I really thought of it as a relatively nice polite site. I would rather not see a debate section because we are really here to provide support and information - there should be no need. I would rather see tight rules on how we address each other with respect, and moderator intervention in back-and forth nastiness, such as freezing threads or removing non-informative sections of argumentative posts.

I agree with Hermajesty and Grace. I can't speak for anyone else, but I've personally got enough nastiness going for myself.
I also have a hard enough time "debating" my condition with the medical community, friends and family who don't understand. HOPE is the place I come to learn, share, and provide/receive support. Additionally, I have no problem admitting to lurking on the TIPNA site. It's not for me. I'm very grateful for the opportunity to be able to choose where I'd like to spend my time.

Suggestions thread ...or criticsm thread? I am in agreement that when life is not too good other things need to be left asside and remain constructive. I am a bit confused as new and green but making problems worse helps nobody. Nastiness is a fairly self explanatory word and I agree we probably have enough within our bodies without generating it outside as well. I am only just beginning to see what the site is about and its purpose and am not too familiar with the other sites. We all have choices but ill health is about personal competition and not competition with each other so a bit of more positive suggestion may be more helpful. I regret that I have little to offer other than to advise from past experience the pain frame suffer enough without personal battles with eachother. Positive is plus and Negative is minus so rock on. Better health!

Very well said, Florabunda and welcome to HOPE! I hope you're able to find some answers here or at least a good direction to go in. Please feel free to ask lots of questions and share your experiences with people who care and understand.
We're all in this together, and are here for eachother!
Warm regards,
Karyn