Health Organization for Pudendal Education

Thank you, Violet. I do wonder how much Dr Baranowski practices these days. My digging around on the internet suggests he is a lot less accessible than he used to be. His own website no longer exists, he doesn't have any private clinics as far as i can see and when i emailed his NHS secretary it bou...

Hello, I have suffered with pudendal neuralgia for 20 years now. i last saw a specialist in around 2015 and wonder if i should try again to find help? Have there been any break-throughs in the last 10 years?! Has anyone seen a doctor in London recently? I saw Dr Baranowski on my last appointment and...

Thank you Violet. Obviously quality of life is a factor I need to discuss again with my GP and weigh this up with everything else.

All the best.

Holly x

Hi, I wonder if anyone can comment on long term use of Pregabalin and what risks this exposes one to? Recently I was encouraged by my doctor to come off Pregabalin to see how well I could cope without it. The answer is not well at all and I have been taking many more Codydramol than I was when using...

Thanks Violet, I share your scepticism and am very aware that my pain is far less extensive than others' as it affects only the vulva rather than being an internal pain. I suspect the inability to sit has confused those trying to diagnose me as this is common to PN and vulval pain evidently! I have ...

Hi Mary Jane, I was told it was PN (actually PNE not PN) from having numbness for an hour or so after a pudendal nerve block. It made the whole area numb including the bit that actually hurts and this seemed to be sufficient as "proof". I do wonder whether this is correct. at the time just...

My pain began suddenly in 2014. None of the GP's I saw had a clue what it was - just left sided, just the labia, probably just the size of a medium coin in extent so not even one side, about one third of one side. It took a further two years to be diagnosed with PN. Since then I have often wondered ...

Hi Dusty, Thank you for your post. I have tried lots of different medication, I felt VERY weird when I took gabapentin but am currently tolerating 300mg pregabalin daily. I wouldn't want to take any more. I have tried other ideas of various specialists but the pregabalin has been the most effective....

Hi Dusty, Thank you, the article is excellent. It feels as though I'm in the wrong country though if I'm after confidence in PT ;) . With the UCLH team not favouring PT or surgery, it will be even more interesting to see what is suggested! The more I read about neurostimulators the more I think they...

Hi Dusty, I can only echo what others say about doing as much research as possible and being more cautious than your pain tells you to be. I was close to having surgery with Professor C and I'm now so glad I didn't. I will report on what Dr B says as his change of heart was clearly not on a whim. My...