Health Organization for Pudendal Education

This morning I had an appointment with Dr Greenslade at Frenchay Hospital.

As has been mentioned by others, he is a nice man, very friendly and polite. I explained that I had come to see him - despite that fact that my PN pain is well managed - simply because if I was going to be living with this for the rest of my life, I wanted to know that I had explored all the options that might be available. Then we went through the medical history, concluding with the surgery which caused my PN.

He feels that in my case the best thing to do is try to sort out what has happened to the nerve, and he thinks that nerve blocks are unlikely to give me any long term relief. With regard to medication for neuropathic pain - he says it is a bit like giving oxygen to somebody stuck under a building. Yes, the oxygen helps, and that's good, but what the person really needs is for someone to lift the girder off them. He says we are going to (metaphorically) try to get the girder off the nerve.

Dr Greenslade is referring me to a colleague, Mr Anthony Dixon, who is a general surgeon at Frenchay. He tells me that Mr Dixon is a very experienced surgeon who does a lot of laparoscopic work, and also works a lot with mesh, doing work to correct prolapses. Technically he is a colo-rectal surgeon. Dr Greenslade's expectation is that Mr Dixon will do a laparoscopic investigation, and see if he can free up the pudendal nerve. As I am still having problems with the mesh eroding inside the vagina, and the diverticulitis is still around, he will deal with all that as well, including a bowel resection if needed. One stop shopping!

I have cancelled a forthcoming appointment with my gynae consultant at Bath, on Dr Greenslade's advice - this was to get the mesh erosion dealt with for the third time. The idea is that Mr Dixon will do all the sorting out that is needed.

If Mr Dixon is unable to free up the nerve, then I will go back to see Dr Greenslade again. His expectation now is that the next step would then be to implant a neural stimulator which I could turn on and off as needed. In the meantime I am carrying on with the tramadol SR as needed, it does take the pain down a notch and I am pretty certain now that it also suppresses the hyperarousal symptoms - (which are completely horrible by the way, difficult to describe and very unpleasant indeed). Dr Greenslade did mention that sometimes the neural stimulator can make the hyperarousal worse, but that they can reprogramme it if this happens, and he is sure that they will be able to make it work for me.

Right now I am feeling very positive all round. Finally someone has taken charge of the situation, and I know that the outcome for me is going to be the best that anyone can manage.

So now I wait to hear from Mr Dixon for an appointment. I think it is very interesting that freeing the nerve is probably going to be done laparoscopically - I haven't heard of this before. It is a great relief, to tell the truth. I've had laparoscopic surgery before, and I know that recovery is so much quicker.

Also - I am very grateful indeed for this forum - it was here that I first heard Dr Greenslade mentioned. If I hadn't come here, the outlook for my future would probably be very different today.

Interesting about the lap surgery option. Would Dr. Dixon do this from the front or from the back? During my recent lap hysterectomy, my gyno surgeon looked for but couldn't even visualize the pudendal nerve because it was too deep and too far down into the pelvis. I don't think he could have been able to do any work around the nerve laparascopically, and he too is a senior and very experienced lap surgeon. Make sure to ask Dr. Dixon whether he has ever had success in freeing up the nerve laparoscopically.

I am sure it would be from the front. I know that they do bowel resection laparoscopically that way. Remember also that the problems with the nerve in my case are because of previous surgery, either the mesh (10 pieces of it) or perhaps a misplaced suture.

So there should be no need to go to Alcock's canal. The surgery was done with the main access via the posterior wall of the vagina, with other subsidiary incisions to pull things into place. So presumably it could all be at least inspected from an abdominal access. This does of course assume that my pudendal nerve is not hiding itself somewhere unexpected! - which may, of course, be the case.

I think I'll have to wait until I meet the surgeon to find out more about this.

Thank you for the prompt and detailed update, Calluna. I am so glad that this was a productive consultation for you and that you are feeling so positive. It seems probable in your case that mesh is indeed trapping the nerve as your PN pain was a direct result of the mesh reconstruction surgery.

I do hope that the new surgeon is able to take care of everything that you need done.

Hi Calluna,

That sounds like a really thorough appointment and you now have a treatment plan to move forward. Dr Greenslade is nice isn't he, I see him again in 4 weeks time. I really like the analogy about being trapped under a building, he's so right isn't he that it's about trying to fix the route cause of the problem rather than just medicating the symptoms. I am on pain meds too that Dr G prescribed and they help abit. It is interesting that he has mentioned the sacral implant, good to know this is done in their clinic, makes you feel they really want to manage the pain situation.

Thanks for posting your appointment details, I know I wouldn't have got referred to Bristol if it hadn't of been for this forum and I must thank you personally as you posted on my initial thread and helped me gain confidence in pushing for a referral.

Kath

Hi Kath - that's nice of you, thankyou!

Yes Dr Greenslade is a really nice man, very relaxed and easy to talk to. He says I may see him again anyway as he may do the anaesthesia when Mr Dixon does the surgery. So that's encouraging. He is a doctor who inspires confidence, definitely.

I am really hoping that Mr Dixon can help me. Dr Greenslade really seems to think I can get this pain resolved, one way or the other - I hardly dare to let myself think about that.

I think we are all grateful for the forum, it is a wonderful resource. I had a National Pain Audit form to fill in whilst I was at Frenchay, one of the questions was, how easy was it for you to find out about this clinic? - scale of 0 to 10, 0= extremely easy, 10=extremely difficult. I put 10 - and in the section underneath, it asked how did you find out about this clinic? - I ticked 'word of mouth' and 'on the internet'.

I hope that all goes well with your appointment!

Thank goodness Calluna,
Excellent to know that you are not struggling 'alone' now and Dr G is doing his best for you. I have spoken to him this morning and feel a bit brighter after the conversation too. He has contacted a guy called Jason Web on my behalf who will look at doing piriformis surgery for me. I doubt it will be quick as it's all NHS, probably the same for you but at least there is progress.
Good luck with it all,
Helen

I am glad you have found a physician who is there to get you back on your feet and sounds like you have some directions now with hope of significant improvement. Dr. Howard does the pudendal surgery laparoscopically but he can only access a small portion of the nerve and really just cuts the sacrospinous ligament, he really doesn't go in and remove scar tissue. It is a very tricky surgery and should only be done by someone who is highly skilled in such techniques. If you have mesh that has entrapped part of the nerve or a suture he might not be able to remove it laparscopically. Also, if you have mesh eroding into your vagina you probably need to have a portion of it removed through the vagina. My mesh was partly removed through the vagina and the rest laparoscopically. You might be interested to see what Dr. Riguad in Nantes France has to say as he has published about how to remove at least two different types of bladder sling meshes.

Helen - I am hoping that because we are 'interesting' patients, the wait won't be too long for either of us. But we will see!

nyt - You are absolutely right, it is going to be tricky surgery. But Dr G tells me that the surgeon who will be doing the work is the best pelvic floor surgeon in the UK, and that he is very experienced with both mesh and laparoscopic surgery. And I agree with you that the mesh extrusion will have to involve some work in the vagina - I've already had two gynae surgeries to deal with mesh extrusions since the original surgery - now it has come through for the third time, in exactly the same place again.

I am very well aware that it may not be possible to sort this out surgically, but I hope that Mr Dixon, when he sees me, will be willing to try. Fingers crossed, basically!

Calluna, we need Dr. Greenslade's contact info on the website. http://pudendalhope.org/node/57#United_Kingdom Could you please help with this? Thanks.