Health Organization for Pudendal Education

Hi Chrissy,

If you log onto a site called pelvic pain health unlocked. You will be be able to contact Judy, she is a fellow sufferer with a vast amount of knowledge and good contacts with Nantes.

Let us know how you get on.

Molly
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Hi Chrissy, The best person to communicate with is either Dr B. Oort Judy from the pelvic pain website. It can be a very expensive process which you don,t mind if you get results. I can sympathise with you being unsure about which way to go, all I can offer is try to get as much info. As possible be...

Hi Chrissy, I had my surgery in Turkey just under two years ago, and whilst I don,t regret my decision I have,nt made a huge amount of progress either. The trouble is options for this condition are so limited. As far as France goes I di not think your health insurance would cover you. Dr B should be...

Hi Chrissy, I,m also in the UK . Firstly I would caution against too many nerve blocks, unless there is a very good reason. Dr B. does like multiple blocks, I had five, and was definitely worse after these. I do not think the French team do that many either. There is a team in Bristol doing decompre...

Hi Andrea,,


I had my radio frequency injection at the ischial spine, this was done in London.

Is this OK after pn surgery five months ago?

Regards Molly

Hi Melanie, I have had Botox with Dr G at Frenchay, this had need discussed and planned as a course of treatment. Mine was just on one side so I don,t know whether he would do both sides at the same time. Do you know what he has listed you for,if not you need to find out perhaps his secretary would ...

I expect for many of us it's a combination of both nerve and muscle component, even the experts I have seen say it's very difficult to work out which is which. It leaves us with a chicken an egg problem,if only we know. Have you tried some pelvic physio? It's certainly worth trying if you have,nt. R...

From what I,ve been told by my pain consultant, muscle spasm is very receptive to NSAIDS, so perhaps you have a greater degree of muscle spasm and the nerve is less of an issue.

Only my thoughts,

Regards Molly

I totally agree with the others, stop cycling until you get to the bottom of this. As you have probably learnt this is a ghastly condition, that is very difficult to treat. My suggestions are either a referral to Dr Baranaski in London, who is one of the few pn doctors in the UK, or a pelvic floor a...

Hi Bunny, That was just for a consultation. Nerve blocks came in around &2000! each and no they did,nt help, in fact irritated the nerve further,but are necessary for diagnostic purposes. Having said that I had five with Dr B which I think is too many, the french team do a maximum of three I thi...