After Laying in bed for an hour starring at the ceiling I thought to myself, what are we doing to increase awareness for pne?
We all heard about als "ice bucket challenge" or MS "stop drop and selfie" on Instagram but what have we done to generate awareness for PNE/PN.
I think we should definitely come up with some ideas to spread awareness. Not just to physicians but people. Every day people. The more people know the greater the likelihood for research and improvements in health.
Let me know what you guys think
Awareness - Let's create it!
Awareness - Let's create it!
Pudendal pain started in Feb 2014. Potter MRI- useless findings (dont waste your money), tried pelvic floor pt, ART, Trigenics, Osteopathic treatment, fascial work, Massage, Shockwave, world renown chiros, osteopaths and PTs, stretching bla bla. Nothing helped but shockwave (which was short lived) and one world renown chiro that is a douchebag because he cant treat me again. All in all, God is the only one who can lead your path.
Re: Awareness - Let's create it!
I agree we need more people to know about this but not sure how to go about it. Your examples are for well known illnesses and got publicitty I think because of that. I think I have seen a segment on the news (could be local yearly) about invisible illnesses so maybe there is something out there to help us get started? I talk about my PN and PNE to educate co workers, friends and family and bring the doctor letter to any and all new doctors to let them know. There was a petition strted a few years go here with the intent to get it to college but I do not think it maybe had enough signatures and did not get sent.
Janet
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: Awareness - Let's create it!
Aside from the fact that I'm not too keen on being doused with ice water 
I'm probably also a little shy about having my photo on the internet associated with some of the things we talk about on this website. It's the type of illness that sort of makes you want to work from behind the scenes if you know what I mean.
Most people tend to go online for answers when they have a "mystery" illness so my goal is to continue trying to provide a credible website with answers and ideas for treatment options for people with pudendal neuralgia, but if anyone has ideas on how we might improve our internet presence I would definitely be open to ideas and I think the other directors would too.
Violet
I'm probably also a little shy about having my photo on the internet associated with some of the things we talk about on this website. It's the type of illness that sort of makes you want to work from behind the scenes if you know what I mean. Most people tend to go online for answers when they have a "mystery" illness so my goal is to continue trying to provide a credible website with answers and ideas for treatment options for people with pudendal neuralgia, but if anyone has ideas on how we might improve our internet presence I would definitely be open to ideas and I think the other directors would too.
Violet
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.