Adelaide Seminar. 25th feb. 2014
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- Posts: 291
- Joined: Sat Sep 18, 2010 4:46 am
- Location: Perth Western Australia
Adelaide Seminar. 25th feb. 2014
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
Re: Adelaide Seminar. 25th feb. 2014
Hi Catherine, I have had real issues over the last 18 months and have had botox for the bladder. However I can't sit and the burning pain has been constant and gotten worse. I had a nasty accident where a boat propeller cut my left side and hip open about 30 years ago when I was 24 years old. I had this pain then and it has now come back with a vengeance. I have all the symptoms for pudendal nerve and has been confirmed by the the bladder being OK once botox has been given. But did not take the terrible burning pain away. I need help with this - no one seems to know of a specialist in Auckland who can help me. I have heard of Professor Thierry Vancaillie and wondered if there was such a specialist in New Zealand. I would really appreciate any help you can give me. It would nice to get my life back. I also want to travel in the next few years.
With warm regards - Raywin
With warm regards - Raywin
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- Posts: 74
- Joined: Mon Oct 11, 2010 10:06 am
Re: Adelaide Seminar. 25th feb. 2014
Hi Raywin,
I'm so sorry you're in pain. I know of no one in Auckland, or indeed in NZ, who diagnoses and treats PN problems. Your closest PN specialist is Thierry Vancaillie in Sydney. I'm in Wellington and have been dealing with PN pain since a fall in Warsaw in 2003. I had decompression surgery in Nantes in 2004, and further related surgery, nerve blocks and Botox in Sydney in 2007. Feel free to send me a PM. We could talk by phone, if you wish.
All the best, Stephanie
I'm so sorry you're in pain. I know of no one in Auckland, or indeed in NZ, who diagnoses and treats PN problems. Your closest PN specialist is Thierry Vancaillie in Sydney. I'm in Wellington and have been dealing with PN pain since a fall in Warsaw in 2003. I had decompression surgery in Nantes in 2004, and further related surgery, nerve blocks and Botox in Sydney in 2007. Feel free to send me a PM. We could talk by phone, if you wish.
All the best, Stephanie
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
Re: Adelaide Seminar. 25th feb. 2014
Hi Stephanie, Thank you so much for contacting me. Somehow I missed when you wrote on my post. I am very keen to talk to you. I spoke to Melissa today. I am very keen to see Professor Thierry Vancaillie in Sydney. The expense is worrying me. However, I would rather go over and see him for an appointment and see what is best for me. I had a boat propeller accident when I was 24 years old and subsequent surgeries over the years. I am currently seeing a physiotherapist who has said it is the pudendal nerve. I have had a lot of sacral and lower abdomen surgery. Scar tissue would be the problem and it surfaced 18 months ago to this unbearable level I work fulltime and intend to fight this condition. I am happy for you to contact me 09 950 6447. My name is LynnetteStephanie P wrote:Hi Raywin,
I'm so sorry you're in pain. I know of no one in Auckland, or indeed in NZ, who diagnoses and treats PN problems. Your closest PN specialist is Thierry Vancaillie in Sydney. I'm in Wellington and have been dealing with PN pain since a fall in Warsaw in 2003. I had decompression surgery in Nantes in 2004, and further related surgery, nerve blocks and Botox in Sydney in 2007. Feel free to send me a PM. We could talk by phone, if you wish.
All the best, Stephanie
Re: Adelaide Seminar. 25th feb. 2014
Hi - I see Dr Vancille in Sydney. Lynette - is it ok if I call you? Thanks. x
My pelvic pain presents as a constant dull ache, fluttering/buzzing throughout my pelvic region. My pelvic diaphram is stressed due to my musculoskeletal system adapting to my uneven hips, which reduces blood flow to the nerves/muscles which is why I believe I have chronic pelvic pain.
Re: Adelaide Seminar. 25th feb. 2014
Oh its good to see other NZ sufferers (but not at the same time) i dont have PNE but my dad does and we have given up finding any treatment in NZ, the prob with Auz is the Dr you mention above i think only works on woman, do either of you know if this is def the case? i tried to email the hosp asking if this was the case and they gave me the most useless response saying try closer to home, after i said there IS No one in NZ!
How much did an appoint and treatment cost you guys?
Jess
How much did an appoint and treatment cost you guys?
Jess
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- Posts: 74
- Joined: Mon Oct 11, 2010 10:06 am
Re: Adelaide Seminar. 25th feb. 2014
Having PN in NZ is all rather complicated, Jess. If you want to send me your phone number via a PM, we could talk about your father's options.
Pudendal neuralgia, diagosed as ischial bursitis, from 1985. Worsened by fall in 2003. Bilateral TG surgery in Nantes 2004. Nerve flattened both sides. No improvement, still cannot sit.
Re: Adelaide Seminar. 25th feb. 2014
Jess, Dr. Vancaillie does treat males. His new consulting rooms are in Bathurst St. Sydney. Call 1300 722 206 or email: info@whria.com.au