Health Organization for Pudendal Education

What they are saying to me, is that I have to wait and see if the nerve is going to heal, and in the meantime the pain will be managed with medication and anything else that helps. They say 1 - 2 years - at the moment coming up to 18 months. Will it heal? - I am in my mid fifties so that counts against me - on the plus side I am basically fit and healthy apart from this nuisance.

There have been no investigations of any sort because there is no doubt that it is the pudendal nerve, and that the problem was caused by the surgery in June 2009. I had a pelvic reconstruction op, innovative surgery and masses of mesh used. I woke up after the surgery with a clearly definined totally numb area on the left side - everything innervated by the pudendal nerve. As feeling came back over some weeks, it came back as pain. I now have pain on both sides, I am told that the right sided pain is sort of crosstalk.

There is a certain reluctance to discuss any of this at the hospital, but I do feel quite strongly that it is not appropriate to try to attach blame in any way, on the consent form for the surgery they did tell me there was possibility of nerve damage and increased pain. I've also been told there is no possibility of surgery to correct the problem - but I would like to hear that from a surgeon who specialises in PN before I believe it.

With all this to-do about the tramadol, I will admit that I am feeling a bit fed up all round. I have tried really hard with this horrible problem, I have done - and still am doing - everything I could think of that might help. And it just strikes me as very unfair that people with less awkward problems get nerve blocks or epidurals quite routinely with no dificulty at all - but I have to wait.

Also, where do they draw the line, and say that it isn't going to heal? Nobody seems to know.

I am at the clinic next week, I shall talk to them and see what they say. I am not a very happy at the moment.

I'm sorry to hear you are in pain. And it angers me that they hav had you waiting for self healing for almost two years! Clearly if you have seen no improvement more medical intervention is required. It might be worth having an initail consult with doctor greenslade privately. It will cost 190 pounds, but perhaps it will kick start the nhs process with your gp, if you have doctor greenslades opinion. Does anyone know what the process is of being referred outside your area? I'm not looking forward to having to persuade my gp into referring me outside the area. She is very "by the book". .

I was really having a bad day on Monday - sorry about that! I was very fed up all round. Today I am feeling better, I think the gabapentin has started to help, this is good!

I've been told that with regard to nerve healing, it happens quite suddenly, you don't see gradual improvement. The transition from 'damaged nerve that doesn't work right' to 'healed nerve that behaves itself' happens over the space of maybe a week, from what I've been told, anyway. So I'm not expecting to see any improvement over time - either it heals or it doesn't. So far, not. It is much the same as when it all started. I am however dealing with it much better 'in my head' now - it felt like the end of the world at the time, especially when I was told I could have it for the rest of my life. Now, it is not so bad, there are ways to manage it that do work for me.

My husband is pretty cross also that they've had me waiting, when I could have started nerve blocks right at the beginning if we'd only known. But that's life, and it is nobody's fault.

I don't think I shall be seeing anyone privately though, spikehades, I shall stick with the good old NHS. I gather that the wait for an NHS appointment with Dr Greenslade is only a month, and my GP is entirely happy to refer me to him, no problems there at all. It is easy to justify the referral once the decision has been made to go that route. First of all, it is not a long way away for me, it is a neighbouring PCT, and for many things it is routine to be referred to the big hospitals in Bristol anyway. So this is just one more on the list. Secondly, the Pain Clinic at Bath doesn't do nerve blocks for PN any more, they tell me that they didn't get good results. But Dr Greenslade is doing them, and they have already said that referral to Dr Greenslade is an option for me in the future. I have a Pain Clinic appointment on Tuesday next week, and I shall try to pin them down a bit with regard this.

The process of being referred outside your PCT is initiated by your GP, they will know the procedure. If you look further up in this thread there is a very helpful post from helenlegs11 -

helenlegs 11 wrote:I was told by the man who actually makes the referral funding decisions in my area that the important wording in the GP's letter requesting funding for a referral is EXCEPTIONAL. Make sure that your own GP makes your PCT aware that there are few/no options for necessary treatment other than this requested one and that the circumstances are EXCEPTIONAL.

So there we are! I hope that speaking to your GP goes well for you.

It's wonderfully encouraging to hear you all talking about different treatment now available in the UK. When I joined this site in Aug 09 (well the old one first) there was hardly any posts under the UK section and now we've come on so far. Keep it coming and lets share this information for the sake of our fellow suffers in the UK. Only wish now I could find some more experts 'up North' - I know some of us have to travel a long way for our treatment.

Cheers
Peaches

I've now got an appointment to see Dr Greenslade at the beginning of April - so that's a bit more than 10 weeks to wait for the first available appointment, not too bad at all really. I am feeling very positive about this, time for a new tack on this whole thing.

Good luck with that Calluna. I would say that you have waited long enough now to see if time brought any improvements. . . I will be there next Wednesday, he is doing botox this time (piriformis) . Hopefully the effects will last a little longer than the steroid injections.
Let us all know what happens.
Take care
Helen

Hope the botox goes well on Wednesday, Helen!

I was surprised how easy it was to get the referral, my GP just gave me the usual form with a reference number and the number to call - one phone call, and it was done. Maybe it is because we are quite close to Bristol, we do get sent there for some things anyway.