Prof Vancaillie

[catherine a]

Forgot to confirm what Ness had said previously regarding those outside of New South Wales. Prof. V will take patients from other States who have been referred by another specialist. Makes it easier for follow up treatments.

[bindy15]

I am very interested in EXACTLY which pain specialist in Dunedin this was??? Catherine, you know I am with you 100%, Prof V gave me back my life and was the most compassionate, gentle and sincere man ever, charlaton ! what sort of word is that?? I m ashamed to be a kiwi when I hear this terrible accusation.

J

[kia kaha]

I am very interested in EXACTLY which pain specialist in Dunedin this was??? Catherine, you know I am with you 100%, Prof V gave me back my life and was the most compassionate, gentle and sincere man ever, charlaton ! what sort of word is that?? I m ashamed to be a kiwi when I hear this terrible accusation.

J

His name is Dr Moeser, Dunedin Pain Clinic.

Kia Kaha,
If I were you I'd change my pain doctor. Find one who is willing to go to the conferences and learn what's going on with the pudendal nerve. I and many others on this site wouldn't be where we are today if we didn't have the treatments in Sydney. It makes me so angry to hear comments like this. Unfortunately, that's the way things are.

I have requested a change of Doctor. It took a year after requesting a change of doctor/reassesment at this Pain Clinic to get to see Moeser, my previous Dr there Dr Jones told me I was faking symptoms of a Gabapentin reaction, and I was trying to sabotage my relationship, all that was wrong with me after a 1 hour exam he said was 'neuropathic pain' originating in the spine.
I made a formal complaint about him through the hospital complaints system, it came back he did nothing wrong, and had offered me the best possible care.

The brand new re-assesment with a new pain clinic doctor ended up being with this Dr Moeser, however he did not re-assess me, wasn't interested in even noting my symptoms, he didn't even touch me, instead bullied me for 2 hours that i already had a diagnosis of 'neuropathic pain' and ordered me to go on methadone.
Of course he is mates and on the same team as Dr Jones, who was obviously protecting his colleague who had had this complaint made against him, upholding his original diagnosis.
I asked him to investigate Pudendal and offered him some scientific literature which he refused, saying he had his own sources.

Follow up appointment with him a month later, is when he bagged vancaillie, also saying that in ten years he [vancaillie] wouldn't even be specialising or practicing in pudendal, as it was a farce, ineffective and a waste of time and money.
He told me he wasn't going to do anything for me since i refused the methadone, and told me to go back to my gynecologist, Gillett (With whom I have an appointment with in the 5th April) Gillett has spoken with vancaillie at the pelvic pain conference in Sydney in February, and apparantly vancaillie has suggested a few things to Gillett, although it has taken 2 months for gillett to sort an appointment with me, I really don't know whats going to happen, but my urologist told me he spoke to Gillett where he said he may organise a Pudendal nerve block for me. They are so useless here, I don't have any faith that they will even manage to do an effective nerve block if it ever gets that far.
Now they are telling me i have IC.

Also so far 4 doctors and specialists have refused to give me the referral to get a private MRI that vancaillie requested I get.
So as i said earlier in this thread, getting a specialist referral to see vancaillie seems next to impossible.

I cancelled my third follow up this week at the Pain Clinic, as i just didn't want to be bullied and ignored again.

[mirandamolly]

OMG you poor girl.I so feel for you, having to deal with horrendous pain and also having to deal with the blind ignorance of some doctors.There have been many medical conditions over the years that drs have not recognized and basically patients have been told they are insane.If a dr has not been taught at uni about something, alot of them have closed minds and refuse to learn.My poor mother for years had terrible cystitis type symptoms but no bacteria in her urine-she was told by various urologists that it was in her mind and she should see a psychiatrist.Years later she found she was sensitive to salicylates in food [she went to allergy clinic at RPAH in sydney] now completely controls her bladder symtoms with diet.
These drs you have been seeing are obviously idiots.I dont know what the medical system is like in NZ, but in Aust you can see a private gp and specialistBaasically here u can see any private specialist u want to, u only need a referral toget more money back.Can u go to your gp and get a referral to a sympathetic private gynacologist-even if u have to travel.Just tell your gp u want a 2nd opinion, and make sure u see a gynacologist or neurolgist that know about this condition-email vanscaille and ask him about a specialist or ask others on this board.Then ask the nz specialist for a referral to see vanscaille and get here pronto!!!!!!!!
I know this is hell----but be brave and strong.Most of us with this eventually find something that helps and treats our pain.Dont give up!!!!!Whatever it takes, get to the clinic in sydney to get youself on the path to healing.Even if u just sit[or rather stand!@]in the waiting room and refuse to leave till u see vanscaille.in the meantime read all the info here to help u control your pain.I myself have been helped by Amy the osteopath at the clinic, who has foound that my nerve is irritated by the ligaments running thru the buttock due to my rotated unstable pelvis and locked sacroiliac joint, as well as muscle issues[piriformis, psosas, aductors and some others]No one else had a clue.
I will say a prayer for u....please ignore these drs and dont give up.
Miranda molly x

[kia kaha]

thanks for reply.
Mirandamolly

I did get my GP to refer me to a private urogynecologist August last year, who just thought I had IC, booked a hydrodistention and cystoscopy, which happened in December, and he says I have IC because my bladder hemmoraged with the hydrodistention. (I had a terrible reaction to the surgery!)
Apart from pain when full bladder and just after when emptied i dont have other major inside bladder pain.
He isn't interested in looking at PN/PNE, and wont do the alcocks MRI referral either. but knows Gillett and says i should pursue things with him.
Seems everything is riding on Gillett, unfortunately in December last year Gillet told me 'I am only a gynecologist, and the PN/PNE is above my head". He told me to deal with the Pain Clinic again, but the Pain Clinic is telling me to deal with him. I feel like a hot coal they are throwing back and forth!!

GP (who doesn't believe I have PN/PNE) also referrred me to a neurologist April last year, and a brian MRI came up clean, so they say they cant do anything for me in neurology, saying 'if your brain is ok then its not a neurological matter'.

Physios/PT and oesteo doesn't do anything for me, however triggger point for help with releasing tension around hips/pelvis from bracing from pain has helped.

This all started for me with an undiagnosed fused sacroilliac from a sprain accident and twisted pelvis, so seems similar to you?

[mirandamolly]

All I know is that very very very few medical professionals know anyhing about PN or any nerve pain in the pelvis----this is new territory.I imagine especially in a country as small as new zealand.Basically if all your other investigations have come back as a dead end, and you think from your research that your symptoms fit the PN profile -then ignore ignorant drs and do whatever u have to to get the help u need.I dont know how the medical system there works but there must be a way you can bypass these idiots and get here to the PN clinic.Can u just find a new gp, be selective what u tell them, walk in and say u need a referral to the specialist Catherine mentioned,or ring that specialist and see if u can make an appmt with her without a referral at all.Then Im sure she will refer u to Prof Vanscaille.Study all the symptoms of PN on this site, if u think it fits u, then bypass them all somehow and get here.U poor girl...what u have been through!!!!!Sometimes in life we r severely tested, and have to b our own warriors---
I literally woke up[or rather it was one night] one day with horrific vulval pain like a hot dagger right in the centre of the vulva-----soon followed by buning, searing, crushed glass soreness also in the vagina and pelvis-and urethral pain too.I went to my gynacologist[one of the best in sydney]who did alll the usual tests and had no idea, except he thoight it was muscoskeletal and sent me to a pelvic physio who thought it was PN-from there I ended up seeing Prof V for a diagnosis.I tried pelvic floor physio but it didnt help at all, it wasnt till i saw amy the osteopath that she worked out what was wrong.I still have flare ups if my pelvis gets out of alignment of if i sit without a cushion or walk up hills etc.My nerve is still very sensitive, but if i treat it with respect and see amy regularly Im surviving ok with this.I believe no other osteopath would have any idea about the pudendal nerve and how to treat it, Amy is a genius in knowing how to work things out.

[mirandamolly]

All I know is that very very very few medical professionals know anyhing about PN or any nerve pain in the pelvis----this is new territory.I imagine especially in a country as small as new zealand.Basically if all your other investigations have come back as a dead end, and you think from your research that your symptoms fit the PN profile -then ignore ignorant drs and do whatever u have to to get the help u need.I dont know how the medical system there works but there must be a way you can bypass these idiots and get here to the PN clinic.Can u just find a new gp, be selective what u tell them, walk in and say u need a referral to the specialist Catherine mentioned,or ring that specialist and see if u can make an appmt with her without a referral at all.Then Im sure she will refer u to Prof Vanscaille.Study all the symptoms of PN on this site, if u think it fits u, then bypass them all somehow and get here.U poor girl...what u have been through!!!!!Sometimes in life we r severely tested, and have to b our own warriors---
I literally woke up[or rather it was one night] one day with horrific vulval pain like a hot dagger right in the centre of the vulva-----soon followed by buning, searing, crushed glass soreness also in the vagina and pelvis-and urethral pain too.I went to my gynacologist[one of the best in sydney]who did alll the usual tests and had no idea, except he thoight it was muscoskeletal and sent me to a pelvic physio who thought it was PN-from there I ended up seeing Prof V for a diagnosis.I tried pelvic floor physio but it didnt help at all, it wasnt till i saw amy the osteopath that she worked out what was wrong.I still have flare ups if my pelvis gets out of alignment of if i sit without a cushion or walk up hills etc.My nerve is still very sensitive, but if i treat it with respect and see amy regularly Im surviving ok with this.I believe no other osteopath would have any idea about the pudendal nerve and how to treat it, Amy is a genius in knowing how to work things out.

[mirandamolly]

All I know is that very very very few medical professionals know anyhing about PN or any nerve pain in the pelvis----this is new territory.I imagine especially in a country as small as new zealand.Basically if all your other investigations have come back as a dead end, and you think from your research that your symptoms fit the PN profile -then ignore ignorant drs and do whatever u have to to get the help u need.I dont know how the medical system there works but there must be a way you can bypass these idiots and get here to the PN clinic.Can u just find a new gp, be selective what u tell them, walk in and say u need a referral to the specialist Catherine mentioned,or ring that specialist and see if u can make an appmt with her without a referral at all.Then Im sure she will refer u to Prof Vanscaille.Study all the symptoms of PN on this site, if u think it fits u, then bypass them all somehow and get here.U poor girl...what u have been through!!!!!Sometimes in life we r severely tested, and have to b our own warriors---
I literally woke up[or rather it was one night] one day with horrific vulval pain like a hot dagger right in the centre of the vulva-----soon followed by buning, searing, crushed glass soreness also in the vagina and pelvis-and urethral pain too.I went to my gynacologist[one of the best in sydney]who did alll the usual tests and had no idea, except he thoight it was muscoskeletal and sent me to a pelvic physio who thought it was PN-from there I ended up seeing Prof V for a diagnosis.I tried pelvic floor physio but it didnt help at all, it wasnt till i saw amy the osteopath that she worked out what was wrong.I still have flare ups if my pelvis gets out of alignment of if i sit without a cushion or walk up hills etc.My nerve is still very sensitive, but if i treat it with respect and see amy regularly Im surviving ok with this.I believe no other osteopath would have any idea about the pudendal nerve and how to treat it, Amy is a genius in knowing how to work things out.Good luck and hang in there

[mirandamolly]

Sorry everyone about my post appearing 3 times!!!! No idea why...maybe because I have to type lying down on my bed and me elbows and arms go to sleep after a while!!!@#

[sneetch]

Hi all!

I'm new to the forum ... I've been lurking around a while but this is my first post. Thought I'd better chime in here as I have spoken to Theirry Vancaillie's office three times in the past couple of weeks, the last time being only yesterday. Sadly, in all three instances I have been told that Prof Vancaillie will absolutely NOT see any paitents from outside Australia or indeed even outside NSW. I've spoken to two different people who were both kind but firm. I was told that he used to see non-locals but "follow-up was just impossible" so he doesn't do it anymore. However, I recently sent an email to him outlining my problems and asked what he could suggest. His reply was short but to the point - "Consider seeing Dr Michael East in Christchurch". I phoned Oxford Clinic in Christchurch where Dr East works and was told that he does treat Pudendal issues and that he had "done a course with Theirry Vancaillie in Australia".
So there you go ... Another option perhaps.

Like you Kia Kaha, I've not been formally diagnosed with PN/PNE, but I do suspect I have a problem. It's true that no matter where in the world you happen to be, this is a raw deal to be dealt, but in my experience New Zealand is a particularly bad location. I've had nothing but the runaround from so-called health professionals who really have no clue what they are talking about. Not a bit shy about charging you for that information though! The last gyne I saw told me "you can truck around as may doctors as you like about this, but you won't find any answers, because there aren't any ... (That will be $268.00 dollars please). SIGH!