Health Organization for Pudendal Education

hi everyone
its been a while since i last posted on here so i have decided to up date you with how things are.
its approx 5 1/2 months since my left sided pn surgery and nothing has changed i still have the same pain i had before surgery, unfortunately i am also now having the most major flare of fibromyalgia and anxiety that i have had for years with constant burning and prickly skin all over my body. this has been a very tough year for me, my mum passed away, my dog got cancer, my son was diagnosed with type 1 diabetes all on top of the sugery and also worry of my condition, so its not surprising that everything has kicked off, but there may be light at the end of the tunnel, i had a good week last week as far as other issues are concerned, my dogs scan revealed that she is in remission, we dont know how long for but its a start and i also won my appeal for dla at the court, but maybe the best thing is that i have been seeing a new pain consultant in nottingham who although has not been able to help with the pn pain has managed to get my on the nhs to see a dr dale who knows about using neuromodulation scs, he has told me that as far as he is concerned the outcomes for the proceedure are not that good, but that he is going to put me forward for the next stage which is an appointment with the multi disiplinery team of neuro surgeon, and scs team members, he says the next clinic is full as they only do 3 to 4 a year but that i should be able to get on the one in february, they will then do tests to assess if i am a suitable candidate and if so then i will go forward for the trial period, in the meantime he is also arranging for me to have a pulsed radio frequency block to see if that helps, so i now just have to conquer the anxiety and fibro issues and hopefully move forward

andrea

You poor thing, what a year you have had. Stress certainly doesn't help matters. On the bright side, it sounds like you have found a doctor that is willing to work with you and now have a plan. Finding a doctor willing to listen and come up with a plan is half the battle. Keep us posted.

I'm really sorry to read that your pain hasn't improved, although I know from what others say that it's still early days as far as the outcome of the surgery is concerned. I remember you wrote that Mr Dixon told you that most or all of his PN patients had improved after surgery. It's a pity we don't hear from any of them on this forum. I do wonder why more people don't post when they have significant improvement after surgery and if anyone knows of someone who got better after surgery at Bristol I'd be very interested in knowing about it.

i do know that its still early days and there were no guarantees that the surgery would work so you just have to keep hopeful. does anyone know what the pulsed radio frequency treatment entails and where they put the probe only when i had my pn blocks it was really painful and i dont want more pain

andrea

Hi Andrea, sorry not the speediest reply to your post as I only check the forum infrequently. Sorry you have been struggling after surgery. PN is such a tough condition. I've had pulsed radio frequency neuromodulation for pudendal nerve problems so can offer advice. I had 3 rounds and for me it was really effective. I had it under sedation and in this respect it was similar to regular nerve blocks. I'm not sure i would have it without sedation. From my experience it did make my symptoms worse for approx 1 week which I could manage but then the benefits really kick in. This is understandable as they pass a current thru the nerve which they think affects the pain receptors. All my pain etc was much reduced and this lasted for up to 8 months. Gradually the symptoms returned to what they were prior but no worse. After the 8 months I had the treatment repeated this was approx 3 years ago. I haven't had the treatment for a while as I had a cfs leak in 2012. I've no idea if this was related to these treatments or if I had cysts on my nerve roots. I think the leak was in my lumbar spine so i think it was unlikely to be the prfn. I'm doing really well on conservative management and avoiding the things that are triggers for me and only have the odd bad days. If you want some more info send me a pm. Jenny