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Arkledessie

Registered: Jan 17, 2007
Posts: 13
Reply with quote  #1 
Hi - is anyone out there trying to establish whether they have IC or PNE?  I haven't had an official diagnosis of IC although it is the nearest anyone has come.  I do have symptoms of both IC and PNE, in that I have had a lot of rectal and perineal discomfort as well as the burning more connected with IC.  I have had painful clitoris all the time.  I do get flare ups though and am not sure if that is how PNE operates!  I have a history of ulcerative colitis so pretty sure it is auto immune.  Blood tests and urine tests all clear. Not sure that food or drink actually cause me to flare - I ate and drank all I wanted over Xmas and was the best I had ever been - does this mean I can't have IC?   I have moved to France and am not yet on the health register so am operating in the dark here with a massive flare up - distended abdomen, burning to die for, constant peeing etc.  I have a history of straining to get the pee out and I think that is more of a PNE thing?  Also the rectal pain and general perineal discomfort?  Has anyone else had similar?
tigfox

Registered: Sept 17, 2008
Posts: 180
Reply with quote  #2 
Hello,
I have recently been researching the possibility of PNE aswell as IC as I am definately affected by diet. What are your symptoms? I have terrible problems with sitting and walking what give me terrible pain in my perimeum and anus. However, I feel this pain is very different to the pain I get in my bladder. My consultant has now agreed to look at the possibility of PNE but is starting with a CT scan to check there isnt anything else going on. I feel when I have pain after sitting or walking this also affects my bladder.
Tig
x

maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #3 

Still a bit early in the morning for me - but what exactly is PNE please? No doubt it's obvious but I can't think at the moment! M.

tigfox

Registered: Sept 17, 2008
Posts: 180
Reply with quote  #4 
Maz,
its Pudendal Nerve Entrapment
http://www.wrongdiagnosis.com/p/pudendal_nerve_entrapment/symptoms.htm
Tig.
x

maz451

Registered: Feb 16, 2008
Posts: 696
Reply with quote  #5 

Thanks Tig - I wouldn't have got that one as I hadn't heard of it before - will look it up. M.

Anne

Registered: Dec 3, 2003
Posts: 162
Reply with quote  #6 
hi

I have been diagnosed with IC and PNE. I was diagnosed with IC in 98 and PNE in 05. I am now on gabapentine and that seems to work for me. It works for both my IC and PNE pain. I also keep to the IC diet and I think that helps my IC. I was diagnosed for IC in the US and for PNE in the UK. I see a pain specialist every couple of months but up to now, (fingers crossed) my pain seems to be under control.

However, I did spend nearly two years getting diagnosed with PNE.
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