Missouri support group

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Missouri support group

Postby kat » Sun Sep 26, 2010 8:09 pm

I'm in Missouri and know no one with PN issues and was wondering if any of you are aware of support groups. I honestly wouldn't be doing as well as I am if I didn't have everyone here to lean on and am just wondering if there are others near me who feel the same.

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
 
Posts: 204
Joined: Fri Sep 17, 2010 3:44 pm

Re: Missouri support group

Postby HerMajesty » Sun Sep 26, 2010 11:32 pm

I'm not sure if there are any PN support groups around yet aside from the one I have just been able to start in NV. The way I did it, and mind you so far there are just four of us and I have been trying to get this together for 9 months now, was to network with my care providers. One woman I met from direct referral from my pelvic floor PT, one through the office of the pain Doc who did my pudendal blocks, and the last one called me because I had requested, and got permission, to post a support group notice with my phone number in the office of my pelvic floor PT. I turned it in to her, and she posted it in the bathroom accross from the toilet, what better place!!???
So aside from this board, if you want to see if there are enough people in your area to form a support group, for sure speak to your PT and any other pelvic floor PT's in your area, and ask if you can post something and/or provide your number to be given out to anyone they think might be interested.
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: Missouri support group

Postby kat » Mon Sep 27, 2010 3:08 am

thanks for the tips. I will let you know how it works out.

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
 
Posts: 204
Joined: Fri Sep 17, 2010 3:44 pm


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