Health Organization for Pudendal Education

Dear friends,
A lady from the pelvicpain.org.uk site has just left me this message. . . . . . . .I had a telephone consultation with Dr Greenslade yesterday and he told me that decompression surgery has been stopped at Frenchay due to funding.
They are having to compile a case before they can proceed. He thinks they will win, but surgery probably won't recommence for about six months. Another blow for sufferers as if life wasn't difficult enough already.

This is appalling!! Just when we thought that we had somewhere to turn in the UK at last. I would love to know what Dr. de Mellow does with any prospective surgical candidates.
I think Dr B refers to Prof Carlsteadt but I'm not even sure if he isn't retired, or at least, very near retirement with no one to replace him as far as I am aware.
I'm annoyed!
Helen

Oh dear, that's not good. I am glad that Dr Greenslade thinks they will win, but a 6 month stop on decompression surgery is going to be hard for people to hear.

Actually I think I nearly had a heart attack when I read this post title. I thought it meant all surgery at Bristol. I am scheduled for more surgery on an emergency basis, no date yet, I've been told I will be called at short notice.

OOOps! sorry Calluna will edit . Didn't think of that
Helen

Oh my, such a hit to hear about especialy with so little resources for PN. Maybe it will get turned around sooner than later, I can always hope! My heart goes out to those looking for PN surgery in Bristol, I do hope someone is not already scheduled and being pushed off until this is resolved.
Janet

Hello ladies,

Just thought I'd let you know that I am one of Mr De Mellos patients (by the way he is excellent & caring). I have just had my first nerve block under x ray guidance (but will have the others done under ct guidance in the future). I had 3 blissful hours of pain relief &today a little sore ( but only to be expected. I believe he is great friends of the doctors in Bristol though I have not yet asked him where he refers for decompression (one step at a time). He does appear to have a good team which has been established for some time (4years+) though don't quote me! I like him and feel he has my interests at heart.

This is a slow journey & the fear of the unknown for me is worst of all. When you think your life is just perfect somebody has to invent pudendal neuralgia like us all I am missing my old life so much . The fact that we have to battle nhs cuts is soul destroying . I always said I wouldn't wish this on anyone but I retract that & challenge everyone to have it for a day! Especially those in the pct chopping board offices! Then they would understand how much suffering we have to endeavour, how much it affects our wonderful families,children,partners and friends. I feel it's having a huge affect on my previously sunny personality but hey nobodys perfect (who could cope with a razor blade sensation in their vagina and rectum).lets pray that somebody with some sense give these expert physicians the money they require to help those who really need it rather than replacing bloody silicon breast implants on nhs !! (sorry ill jump of my soap box)

God bless to us & hoping everyone out there doing ok even just for today

Charlie

Hello Charlie

That's good to hear about Dr de Mello, and wonderful that you had some pain relief with the block. This ongoing pain does indeed affect us deeply, it is hard not to be changed by it. I do hope that you find something that helps with the pain very soon, I had good results with pregabalin.

Couldn't agree more about replacing implants for free on the NHS and stopping PN surgery. If you are on your soapbox I will be standing right there cheering and agreeing!

Am now just wondering to myself if I am still going to be getting the surgery that they were talking about yesterday, it is not classic PN decompression surgery but it is definitely surgery to alleviate PN. I guess I'll just have to wait and see.

Hi Charlie,
It's good to hear your favorable comments about Dr. De Mellow but more importantly that you got some relief from the nerve block from him. I hope this improvement last once any initial pain has gone.
I wonder too, does he administer botox? I did manage to get this in Bristol (thankfully) but apparently it is not widely or ever?? now available on the NHS. I'm not sure if things have changed or if Dr G hadn't checked if he could/should be using it for me. My botox shot was just over a year ago, it was the only thing that has been even slightly effective and although the effects on my piriformis muscle did wear off I could still feel some small benefit even after 4 months.
I would gladly pay for the actual botox product rather than say a steroid injection (which didn't work for me) if the NHS would provide the rest That's not going to happen though is it? Going Dutch!
I wouldn't mind so much if any private medicine we ever sought for ourselves, wasn't looked on so unfavorably by the 'powers that be'. I'm sure that if I paid for a second botox injection privately, they would dismiss my PCT referral funding immediately, even though it may not be available on the NHS anymore.
Saw this tho' http://www.nhs.uk/medicine-guides/pages ... on%20vials
it doesn't say these shots are not available
It's so sad that our NHS is in such disarray.
Just read your post Calluna. I would hope that the other issue's you have can be 'highlighted' to take care of any 'clinical reasons' why you need this new op. Would Mr Dixon be doing it again? After all they were going to rush you in when ever a spot became available so I can't see that they won't do it. Maybe there will be more theatre space now that the PN'ers can't get the op. I'm sorry if this info about Bristol has worried you, you can do without that. No! I feel sure they couldn't do that to you!!
Take care all,
Helen

Hi Calluna, i would be amazed if they cancelled any pending surgery. I think it will only be new listed cases. Ill keep everything crossed for you & hope its a success.

Hi Helen, I will ask Mr De Mello if he does botox injections into the pelvic floor & get back to you when i next see him. As with these drugs they are usually "off license" prescriptions but can be recommended & used by a consultant. it will be the dreaded cost implications rather than the evidence based practice if they are done privately. Im with you on paying for these as "extras" even if they are expensive. As they say " you cant put a price on your health". Did joke about this to a friend saying i would sell my granny if required. Only a joke mind you as she is a dream boat even at 90!
Sorry im not up to speed - what is your funding request for - is it surgery abroad . sorry if i sound stupid but im new to this.

can i just add another question - do any of you have crps & how can it be treated ?
i am taking gabapentin 900 mgs but nothing else - any suggestions
xc

I haven't actually got a date yet - they've told me that they will call me at short notice. Yes it is Mr Dixon again, he is going to try to take out the rest of the mesh as it is causing more problems with the nerve. And I'm sure you are right Helen, they can de-emphasise the PN bit.

Charlie, I don't have crps but I do know that 900 mg of gabapentin didn't do anything for me at all with regard to PN pain. I was getting some relief at 1800mg but could not stay awake and it was like thinking thru treacle so we switched to pregabalin which I found much more helpful.

Wish I could suggest something that could help...

Charlie123 wrote:Sorry im not up to speed - what is your funding request for - is it surgery abroad

There will be many people here donning their coats and heading quickly for the exit now!! Sorry if you have heard this contorted tale before people.
No Charlie, it was the 'normal' funding request, just for me to be referred to Dr G in Bristol, but what a fiasco!
I have a rather negative and unhelpful GP, so while she was off for few months I saw a 'window of opportunity' and managed to get a private appointment with Dr G through an extremely helpful locum Dr. My GP'd had nothing constructive to offer except, 'pilates classes' I tried, they made things worse!
I wasn't getting anywhere with the NHS at this stage. Any treatment, which I always had to request, was having no effect unfortunately, so paying seemed to be a good idea, especially as there was a 6 months wait to see Dr Greenslade on the NHS.
2 weeks and £200 later, Dr G diagnosed PN and PS, so the whole thing was very worth while.
He sent the report to my GP (she was back by then) asking for an NHS referral, as the equipment at Frenchay's NHS hospital was needed for the targeted injections he recommended for me.
My GP said she didn't hold out much hope for a positive result. Sure enough the referral was refused, as the NHS, 'do not fund on going private medical treatment'. . . . . I was sure that 1 consultation wasn't ongoing medical treatment, but I followed their instructions to try and get this decision overturned, and asked my GP for help.
She point blank refused!! Stating that she had followed the correct procedure and there was nothing more she could do. I had to take the matter up with the PCT, she would not.
I did try, but was told that only the GP could appeal the decision. I then spent ALL DAY phoning backwards and forwards between the PCT and the surgery. Never being able to speak directly to my GP, the poor receptionist had to be the go between.
Eventually I did speak to 'The Man' who makes the funding decissions. His advice was that I ask for 'EXCEPTIONAL ' to be included in the application. This would swing it every time apparently.
Thankfully, my GP was then on holiday so another, almost equally begrudging GP HAD to write on my behalf. Oh so sorry for asking (very nicely btw) to do your job.
2 days later Dr Greenslade's secretary rang to say I was booked in for my first treatment. RESULT 'The Man' had been right!
I had 4 treatments and a followup phone consult over the next year. Dr G then recommended decompression surgery and endeavored to find someone to help with that. AT LAST !
All to no avail. It was discovered that I had NEVER been granted the referral in the first place!! My NHS appointments had only happened because of an oversight at Bristol (I presume anyway)
Of course everything ground to a halt, and there it has stayed. The PCT keep refusing my funding request as they think I have been getting ALL of this treatment privately (as if I could afford it!) My GP has remained stubborn and unyielding. Until I made an official complaint
Over 1 year later GP war still rages . She should have been ditched, I know, but I still have no clue why two reasonable people (do I presume too much?) can come to a sensible conclusion, and ANYWAY if this problem is so difficult where on earth do I start and explain this to someone else?
Is it the system that is flawed? or just my luck?
I have to say that I am the only person who has had these difficulties, that I am aware of. But now that they have stopped decompression surgery in Bristol the whole debacle is mute. That is probably my fault too, as who on earth has payed for all of my treatment so far
I still haven't got a clue what is going on and what, if anything, is going to happen. It's a shambles.