Health Organization for Pudendal Education

Hi All,
I consider myself lucky given some of the stories on here but I am clearly not my old self. I started getting symptoms back in June 2013. Finally diagnosed myself, largely from this site! Got myself referred to Dr Baranowski in London who confirmed that he was pretty certain that I had PN.

My symptoms largely centred around numbness rather than pain, also erectile dysfunction. Had 2 nerve blocks - 1 in early Jan and another in early Feb. The effects of these have now pretty much worn off and I'm a bit concerned to find that my symptoms seem worse than before. I rarely ever had pain but now I seem to get dull aching and pain in the perineum and occasional shooting pain in my penis. It's not extreme - during the day it's barely noticeable the majority of the time however at night, if/when I wake up I often can't get back to sleep for the low level, continuous throbbing... When I 1st go to bed I can't really feel it but as I inevitably drift out of sleep during the night I find that I can't get back to sleep as it's there, throbbing... Is this normal?

Prior to PN I used to cycle (a hell of) a lot, some running and the gym. This reduced to 3 or 6 miles of walking per day, depending on whether I worked to and from the station. Prior to the nerve blocks this wasn't a problem but now it seems to cause some problems which is worrying

Dr B said that if I felt it was necessary I could try pulsed neurofrequency modulation.... What does everyone think of this? I see that it can help for several months at a time however since the nerve blocks seem to have aggravated things a bit I'm a bit hesitant.

Am due to have physiotherapy tomorrow... Not sure what that will involve

you can try....although I always say just because it worked for someone else doesn't mean it's going to work for you

Yeah I'm under Dr B and in the exact same position as you. Had 2 nerve blocks first made me worse second improved on the first but still worse than before I had them. Now trying to decide whether to have PRF. Probably will try intensive physio and lifestyle changes for 6 months first as like you I am worried about getting worse. To be honest I'm disappointed with the options but Dr B reckons I don't have a quick fix option but that I can improve with physio so I'm trying to put my trust in him.

chrissy wrote:Yeah I'm under Dr B and in the exact same position as you. Had 2 nerve blocks first made me worse second improved on the first but still worse than before I had them. Now trying to decide whether to have PRF. Probably will try intensive physio and lifestyle changes for 6 months first as like you I am worried about getting worse. To be honest I'm disappointed with the options but Dr B reckons I don't have a quick fix option but that I can improve with physio so I'm trying to put my trust in him.

Dr B referred me for physio too... Where are you having it? I've been referred to CHHF... The woman there is a pelvic area focused physio, she gave me an all over examination, said that my left hip and leg muscles are weaker and stiffer than the right. This is prob because I had a bike crash in 09 and landed quite heavily on the right side. I was a bit disappointed that she didn't really have any specific PN related advice though...

I think I will be going to the pain centre in Walton (Liverpool)
I was very wary of the psycho pain counselling bit but suppose I will give it a go

chrissy wrote:I think I will be going to the pain centre in Walton (Liverpool)
I was very wary of the psycho pain counselling bit but suppose I will give it a go

Why were you wary of the pain counselling? I find it quite useful, although I've only been in once... It was nice just to be able to talk everything through. Dr B may be an expert in PN and nerve blocks etc but he doesn't have much of a bedside manner

Just felt like its not going to make me better talking about it so why bother! You are right about Dr B though haha