Health Organization for Pudendal Education

Thank you so much for letting us know about Karen and giving us the opportunity to pay tributes to her. I remember her well, as a vital member of the TIPNA forum, always searching for answers, encouraging others, ready to respond to any questions I had for her. I'm deeply saddened by her passing. Ma...

Ezer, thank you so much for sharing your experience of and information about opioids.
After nearly a decade of under treated pain, and indeed worsening pain, I now take IR oxycodone twice a day.
Have you managed to get on top of your PN pain?
Stephanie

Hi Lara and Janet, It's my view that opiates/opioids can be very useful, even life saving, in the management of severe chronic pain. I myself took codeine phosphate, post decompression, for ten years. In the beginning it helped some, however as the pain worsened over time its effect, even at increas...

How wonderful that HOPE was able to help Gary in this way. And that you too have been there for him, Greg. Please keep us posted about Gary's progress. I was interested to hear that Prof. Robert will perform re-do surgeries in carefully selected cases. Best, Stephanie

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.

So interesting, Rosemary, about your doll of the same name. I had a large walking doll in the mid 1950s and I called her Rosemary, too. Like you, I still have her! She has long blonde hair and blue eyes and is a nice sight in the grandchildren's playroom!

Hear, hear, Positive Poppy!

Hey, I'm loving this breath of fresh air! For the record, I had no problems during, or after, TG surgery. (I remain in pain because my nerve was severely compromised.)

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...

Hi Kevin, I'm so sorry to hear about your predicament, especially as you must sit to work. I was interested in your mention of the ACC (I am also from NZ): did a medic in NZ confirm your pudendal nerve injury, and was this diagnosis accepted by the Corporation as related to the accident involving yo...