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Treatment options for UK & Irish members; including VHI & HSE criteria for funding and E112 Applications etc.
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: New member

Post by helenlegs 11 »

Hi Andy,
Welcome :)
noonoo wrote: Just wondering if a PN operation is possible in the UK?
That is a very good question but the answer is dictated by another question . . . .NHS or private?
There are 3 centres in the UK (see home pages http://www.pudendalhope.org/node/57#UK) that specialise in pelvic nerve pain. London, Manchester and Bristol.
I think that Dr De Mellow has to refer people on, as there isn't a surgical option in Manchester.
I haven't heard of anyone being offered the option of surgery from London recently although Dr Baranowski did used to refer to Prof Carlstead in the past. I'm not sure if Prof Carlstedt is still practising within the NHS although this is his private practice. http://www.londonnervecentre.co.uk/
Dr Baranowski and Dr Curren (London) both seem to offer neurostimulation as a 'final' solution. I wonder if this is also true of Dr B's private practice??
Bristol (Dr Greenslade) are still offering surgical decompression but they seem to be having funding issues within the NHS.
If it was private practise you have Proff Carsteadt (see above) and Dr Wong (Bristol) Maybe someone else can tell us more?
Good luck,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Bathsheba
Posts: 66
Joined: Sat Oct 15, 2011 6:18 pm
Location: Northern, VA

Re: New member

Post by Bathsheba »

Charlie-Welcome.

I got my PN from a botched pelvic medical procedure. Since the onset of my PN, I have too have had difficulty at times determining when I have to urinate. The signal that the bladder is full is turned off for the most part. Also, when I do sit on the toilet frequently I have to force the urine. Not sure why I have this symptom because I am not sure what exactly happened to my internal pelvic nerves/ligaments, etc., when the procedure was botched.

I am glad you have found this forum. You will find a lot of helpful information as well as support from other PN sufferers. This is an afflication that affects a very private part of the anatomy and even friends will not want to discuss your toilet habits, rectal pain, involuntary sexual arousal, vulvar pain, etc. Here you can share everything.

What's more, you can connect with othr people in GB who have located MDs or PTs who have helped them.

Best wishes,

Bathsheba
Botched blowing up of bladder July/2011
Was on Lyrica 800+ Mg./day for over 2 years
Bad fall due to Lyrica dizziness, seizure
Due to low blood sugar, side effect of Lyrica
Now on gabapentin, OxyContin, tramadol
Looking for pain pump, has to be local
cotton
Posts: 2
Joined: Sat May 26, 2012 2:08 am
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Re: New member

Post by cotton »

I am new here. I like caring about health. I am happy to find it. Hope can learn more things. :)
Poppy
Posts: 66
Joined: Sat Mar 24, 2012 3:19 pm

Re: New member

Post by Poppy »

Wow Bathsheba, I have exactly the same problem. At first it was just having difficulty and needing to use my pelvic muscles to push which has caused a small bladder prolapse but recently, since the PN started I'm not getting any sensation of a full bladder at all. I have to remember to go regularly. I was told the nerve to the bladder wall had been cut or damaged when I had a hysterectomy which is why I couldn't empty properly but this new lack of sensation is quite disturbing. I shall ask my osteopath on Wedneday if he knows which nerve could be affected but I have 6 months to wait to see Dr de Mello again.
1985 diagnosed fibro; 1990 hysterectomy with bladder suspension;2000 T12 (Maigne ) syndrome; urticaria and angioedema; sjogrens syndrome; adhesions; pelvic pain; two herniated discs in neck.
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