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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Violet M
Posts: 6679
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Suggestions Please......!!!

Post by Violet M »

Karyn wrote:Greetings, Mods!
Would it be possible to have a photo gallery on this site, for those who aren't shy?
We'll have to think about this suggestion. I think it's a lovely idea but we had problems on the old forum where people who weren't shy at first became shy later on and regretted what they had posted when they discovered certain family members and acquaintances were perusing the forum. It became a nightmare to the moderators to try to remove what they wanted removed.
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.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

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

Post by HerMajesty »

Hi Violet,
You asked me where the ant religious debate stuff was on the old board, but then that post got locked before I could answer. I am not great about reading the "forum rules" section on any board: This jumped out at me because it was right next to the topic category heading on the board itself, where it now says:

"SPIRITUAL AREA Here is an area to discuss and relate to Spiritual matters....share a thought, happy moment, cry on a shoulder, offer some faith to those in need. This area will not be viewable to non registered users."

I don't remember the old wording but it said something to the effect of "This is where our religious members offer each other spiritual support. Absolutely no religious debate..." I think it went on to list a few other "absolutely no" things, can't remember what they were but my own additional wording would be ..."or negative comments about the religious beliefs of others".
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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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

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

Post by Celeste »

Violet M wrote:
Karyn wrote:Greetings, Mods!
Would it be possible to have a photo gallery on this site, for those who aren't shy?
We'll have to think about this suggestion. I think it's a lovely idea but we had problems on the old forum where people who weren't shy at first became shy later on and regretted what they had posted when they discovered certain family members and acquaintances were perusing the forum. It became a nightmare to the moderators to try to remove what they wanted removed.
There is always Facebook, email, and snail mail for more personal contacts. I've done them all and in some ways, I think it's better because the person retains control. Hopefully another site closure wouldn't happen, but if it did, you'd still have your network in place. I think a lot of people were really thrown with those lost connections this past year, and it seems like it would be better to keep them separate. JMHO.
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, Celeste. I wasn't timed out. I typed in the wrong answer to the question. The post was then lost and I had to re-create it.

Emily B.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

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

Post by HerMajesty »

Emily, I try to always remember to hilight, right-click, and "copy" my long posts or PMs to the clipboard before I try to send, as they can be lost for any number of reasons during the sending process.
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: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

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

Post by HerMajesty »

And Karyn, would you please just give in and get a Facebook? ...resistance is futile...you shall become one of us...
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.
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

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

Post by Karyn »

HerMajesty wrote:And Karyn, would you please just give in and get a Facebook? ...resistance is futile...you shall become one of us...
:lol: :lol:
Are you kidding me? It's all I can do with keeping up with this forum! :lol:
Maybe, if I EVER have surgery and have got some free time on my hands, I'll check it out and dabble a little. :lol:
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.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

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

Post by HerMajesty »

Karyn wrote:
HerMajesty wrote:And Karyn, would you please just give in and get a Facebook? ...resistance is futile...you shall become one of us...
:lol: :lol:
Are you kidding me? It's all I can do with keeping up with this forum! :lol:
Maybe, if I EVER have surgery and have got some free time on my hands, I'll check it out and dabble a little. :lol:
Facebook is actually a time saver. Right now you have to keep in touch with all your cyber-friends through lengthy board posts and personal emails that actually say meaningful things. Facebook allows you to to create the illusion of relationship through a series of impersonal one-liners.
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.
User avatar
Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

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

Post by Karyn »

HerMajesty wrote:Facebook is actually a time saver. Right now you have to keep in touch with all your cyber-friends through lengthy board posts and personal emails that actually say meaningful things. Facebook allows you to to create the illusion of relationship through a series of impersonal one-liners.
:lol: OMG - you kill me!!! :lol:
OK - when I'm ready to take the plunge, I'll do what I usually do and consult with you for the "how to" ... :lol:
I was pretty adament about not creating a FB account and scoffed at your "resistance is futile". I was like, "Oh! But poo-poo on you, HM!"
But since you put it this way (quote above), it really does shed a different light on things. :D
With love from your friend and biggest fan,
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.
User avatar
Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

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

Post by Celeste »

All you do is give Facebook your email account and make a password, and you're in. You can send PMs through it, too.

It truly is a timesaver if you need to broadcast something, but the catch there is that you have to censor yourself...can't exactly complain about a specific person if they'll get the broadcast because they're your Facebook friend. :oops: :oops: :oops: You also have to remember who's going through what in their lives, so you don't post something that will inadvertently be hurtful. In those cases it's wise to maybe give that person some notice privately so they won't see your big announcement and recoil from it because they're in an opposite life situation. This can apply to soooo many things.
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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