Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
I have emailed with Dr. Adele Burgess and she is listed in our list of Australian docs. I can't really comment on her expertise but she is definitely interested in treating PN patients. There are several people who have posted about Dr. Loefler. You can type his name in the search bar in the upper right to read who these people are. Maybe you can send them private messages and hopefully they will respond.
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.
Hi admir87, I had bilateral pudendal nerve release on 30 May 2014. Dr Loeffler performed the surgery with Prof Thierry Vancaille (pudendal nerve specialist in Sydney) assisting. Dr Loeffler is an orthopaedic spinal surgeon and knows his way very well around all things spinal and Prof Vancaillie included him in the Sydney team of WHRIA (Womens Health Research Institute of Australia). Dr Loeffler has had enormous experience in spinal surgery and has extended his expertise to include pudendal nerve release. The recovery has been slow but nerve recovery is apparently exactly just that - slow! This is how I'm managing 20 months down the track: I no longer take 600mg of lyrica daily, I no longer take 60mg of Cymbalta a day, I no longer take 10mg of endep a day! Yay! (It's taken patience to very slowly titrate downwards one medication at a time with a break in between to let my central nervous system settle). I had a flare up of pain with the endep withdrawal but am approx 2 months nil endep now and the flare appears to have settled well and I'm expecting much more improvement over the next few months. I can't begin to tell you how wonderful it is to be medication free and feeling well too. I attended physio with WHRIA for over 12 months and gently introduced appropriate exercise regimes for me to go easy on my pudendal nerve and recover fitness lost during my period of incapacity. I do take my cushion everywhere with me but that is not a bother. I sat for 40 mins on a train journey to the city yesterday, walked through the Botanical Gardens and down to Woolloomooloo for lunch where I sat for just on 2 hours. Another lengthy walk across the Botanical Gardens to the Intercontinental Hotel for a sumptuous dessert degustation followed by another great walk to the railway station for the return trip home. I've been on an hour walk this morning incorporating a big hill, came home and jumped into the pool and floated around cooling off and cleaning the pool at the same time. I'm now sitting cross legged on the floor posting this message to let you know that there are many good news stories out there.Lots you don't hear of because people are out there enjoying their new found freedom. It is wonderful. I would say that I live a wonderful life now but that I 'manage' my lifestyle by being mindful of sit time and certain types of activities. That's no biggie at 56 years of age - everyone appears to be getting something! I found on one of the posts from this forum a biomechaical scientist named Katy Bowman who wrote and ebook called 'Alignment Matters' which I use as a constant source for my exercise regime. It's not for everybody but it works for me. She is on the net - I think the site is The Restorative Institue (I think!). It might not be for you but just wanted to let everyone know out there who is suffering how fabulous things can be if you decide to take the surgery option. Oh, just to let you know as everyone's surgery experience is also different. My surgery went well and the post op pain was absolutely doable - breezed through the post surgery pain aspects. Obviously I took meds from op and I was on a cocktail of pudendal neuralgia meds, lyrica, Cymbalta & endep so I expect that helped significantly. Any questions please feel free to ask. I no longer attend the physio specialist in pudendal neuralgia as I'm fine with my daily exercise regime. I do always consider an exercise and what impact it may have on my pudendal nerve - but that's what managing your health is about. Good health to everyone, cheers Judy (it's been simply ages since I posted but I hope someone on your forum may get some comfort from my story)
Bladder prolapse surgery 1992; hysterectomy & 2nd prolapse surgery next 6 years. PN started 1992 but managed well. Flare in March 2012 ignored signs from prolonged sitting & exacerbated by UTI. PT so far unsuccessful. Two bilateral blocks only right side positive for short time MRI showed PNE left side. Results conflicting so proposed nerve stimulater implant with bilateral PN release to cover all scenarios. Might go ahead approx Feb 2013 Housebound..300mg Lyrica x 2 daily &5mg Endep
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.
