Health Organization for Pudendal Education

catherine a wrote: Hopefully more and more NZ specialists will attend the seminars held in Sydney each year.

yes good NZ specialists attend these seminars, but its up to them what they do from the info they gain.
Example, my specialist (Gillett) attended this year and still has no clue what to do or look for.

Have you made any progress kia kaha ? I hope you are persevering and getting some answers ... maybe I will put my Wayne Gillett letter together in the school holidays.

J

bindy15 wrote:Have you made any progress kia kaha ? I hope you are persevering and getting some answers ... maybe I will put my Wayne Gillett letter together in the school holidays.

J

please write to Gillett
I'm not getting anywhere.

last appointment with Gillett 2 months ago, and he has done nothing he promised since. The ACC claim is still waiting for his input too.
Incredibly slack and disappointing.
I doubt the claim will go through so I can get the botox from East.

You have found someone to give you internal botox in Dunedin ?

J

bindy15 wrote:You have found someone to give you internal botox in Dunedin ?

J

nope check out my thread here, explains it all
http://www.pudendalhope.info/forum/view ... =17&t=3628

Clarification of Dr. Vancaillie's clinics. All patients need to have a referral from another doctor or if residing outside of NSW a referral from another specialist.

Female patients only - Royal Hospital for Women, Randwick NSW. (Public Hospital)
the contact number 02 9382 6248, or 02 9382 6249


Male and Female private patients -

info@whria.com.au
Level 1 97-99 Bathurst St.
Sydney, 2000

Tel: 1300 722 206

I was just looking for some info to get an appointment for my nieces, who sadly are suffering with various issues, and the ONLY Dr I would entrust with their care, is the Prof.
I tried to register only to find out I already have, back in 2013. I’m sure I shared my story then but seeing that anyone had the Gaul to call my angel a Charleston, makes me want to share again how He was the only Dr to take me seriously.
In a little defence of other Drs, I had just suffered a severe trauma. Walking in on the murder of a loved child. As a strong believer in the mind/body connection, I do not blame other Drs for thinking my symptoms were trauma induced, but what I resented is that they never even bothered investigating.
After years of unbearable pain (think the worst UTI you have ever had, unrelenting, no break or peace from the urgency, frequency and spasms so severe, I could not pass urine without a catheter because the spasms were unrelenting so I could not relax the muscle to allow urine to flow) I was sent to have biofeedback. That night I lost my mind. I took a razor to my genitals and attempted to cut away the offending parts. I ended up in a psych unit because they thought I was suicidal. I was not. I was trying to live! With 5 children, I would never leave them even if I had to live in agony, I can only explain that after so much time, so little sleep and a procedure that seemed to make everything worse, I lost the ability to reason and did what, in my unsound state, made me think I could somehow lessen the pain and continue caring for my children, even if that meant losing all other sexual sensation and function.
The lady that performed the biofeedback told me she isn’t supposed to refer patients but that I should look into seeing the Prof. best advice anyone ever gave me. Life altering and life saving.
Unlike the other 3 urologists I had seen, Prof immediately said, there’s a test for that. No one had even mentioned a urodynamic test to me before. A test that measures what is happening to your muscles as your bladder fills, as it voids and as it refills.
I know it sounds crazy but when I saw the nurse practitioners note, MARKED URINARY DYSFUNCTION, the relief was visceral. Not because I wanted there to be something wrong with me, but because now maybe that someone believed me, I would get some relief.
Prof sent my results to Frs around the world, asking if they had ever seen anything like it. He found no help so we began experimenting. Botox was only being used for migraines and cosmetically back then, but we tried, thinking if we could paradise the muscle, it wouldn’t be able to spasm. The thinking was flawless but sadly it didn’t work. At the time pudendal blocks were only being done in France, but Prof studied and tried it on me. Again, very little relief physically, but I cannot stress how much emotional relief it was to have a Dr that cared so much and was willing to work so hard to help me. In the meantime, he sent me to a pain specialist and the quality of my life changed. In time Prof also became a Pain specialist and began caring for me under all 3 disciplines.
Eventually I moved to Victoria, other health issues began such as epilepsy and a febrile dysfunction and I was no longer able to work. The travelling and cost of seeing Prof became more than I could afford but I will never stop being grateful for the man that is not only a Dr, a specialist, but a diagnostician. He never doubted me, never stopped looking for ways to help me and gave me back my life.

lisalau wrote: ↑Tue Dec 30, 2025 10:06 pm In time Prof also became a Pain specialist and began caring for me under all 3 disciplines.
Eventually I moved to Victoria, other health issues began such as epilepsy and a febrile dysfunction and I was no longer able to work. The travelling and cost of seeing Prof became more than I could afford but I will never stop being grateful for the man that is not only a Dr, a specialist, but a diagnostician. He never doubted me, never stopped looking for ways to help me and gave me back my life.

Thanks for sharing your story. Sounds like you went through a lot. I would be interested to know what pain management treatments you had that helped you get your life back. As you can imagine, around here we are always looking for reports of things that helped.

Violet