Hello. I am new here and feeling desperate to make contact with someone who has pudendal neuralgia.

[Anna24]

I have developed this horrendous condition following recent surgery for prolapse. I know it is very rare so it's easy to feel very alone as I do. I live in Bath.....anyone live near me with this.?... or anywhere else in UK. ? I'm in a lot of pain and cannot believe what has happened to me .... Thank you

[sweetpea02]

Hi Anna. I was diagnosed with PN last June and so I completely empathise with you. I'm really tired so will just give you some advice to keep you going at present. Have you checked out the pelvic pain support network? They have lots of information regarding this condition and there is also a forum with several active members who have PN. I want to reassure you firstly that there are doctors in this country who diagnose it using the Nantes criteria ( they pioneered protocols for nerve blocks and surgery). There is a Dr Greenslade in Bristol who does NHS as well as private consultations and he does diagnostic blocks as well as other procedures. They also do surgery if they believe the nerve is trapped. Mine is a very long story but one of optimism as I now have the tools to help reduce it but it took me a long time. The worst thing is the sheer panic over what it means and the total lack of guidance. You are very welcome to pm me if that would help, I'm happy to answer any questions you may have. Please stay hopeful and try to stay as calm as you can because stress have a negative impact on it as I'm sure you'll have experienced. Sending you a supportive hug, Fi

[Anna24]

Hi Sweetpea... So nice to get a reply from you. Where do you live? You say I can pm you. What does that mean? Sorry if being bit thick! Drugs are making me that way.

I have so many questions. Thanks for your advice.....am trying to get my head round this whole thing . Thanks for your lovely supportive message

[sweetpea02]

Hi Anna!

Just read your e-mail, I can just imagine how many questions you have, it'll be all you can think of and the meds don't help in terms of your thought processes etc!

I live in Leeds so it's miles away but if you want to talk to me on the phone that's fine. I spoke to several women via ppsn and that was a big help. I hope you have a bit of a plan as to what to do because that really helps as you feel like you're taking charge a bit. I'm coming to Bristol on 4th Oct to see Dr Greenslade re my last nerve block which worked for a few hours but to be honest I think the best thing for releiving my pain has got to have been specialist physio (internal which sounds hideous but once you get used to it can work wonders, just depends on the cause of the pain though).

Pm just means you can send me a private message by clicking on my name, you're not thick, just new to this!

I do hope you're ok Anna, I absolutely feel for you but your're not on your own,

You hang in there and take good care of yourself,

Sweetpea x

[Chrisrow]

Hi Anna, I have just read your message from while ago. I live in bristol and also suffer from pudendal neuralgia. It's been a long journey even to get a diagnosis with pointless surgery & treatments on route. It sounds like you are struggling which I can empathise. I still suffer pain. Of all the things tried 2 things really made difference. Amitryptyline & I fly to edinburgh every month with exceptional physio called bill taylor. My email is [e-mail] if you want to get in ouch. Regards, chris (guy)