Health Organization for Pudendal Education

Hi

First post on the site, lots of great information. Glad to see I'm not alone, given I've had PN since 2004, but was only diagnosed in 2010.

Am currently under care of the excellent Dr Greenslade and Dr Wong in Bristol (all the positive comments about their professionalism, competence and bedside manner that you may have read elsewhere on here I'd fully endorse), and I'm going to be having PN Decompression Surgery (TG route) in the next couple of months.

The surgical aspects have been fully explained, but am not sure what the post surgery recovery timetable looks like - at first I was told I'd be in hospital overnight, just to make sure the stitches from the surgery held OK, then I was told it could be 3 or 4 days before I'm allowed home. Also told it was likely I could go back to work after about three weeks - but things I've read on here suggest I could be having issues walking for some time, let alone do anything else. Similarly have been told that it could be 3 to 12 months before seeing any improvement in pain levels.

Is there any timeline/information about activities I'm going to be able to do and/or should avoid in the 6 or 12 months post surgery period? Apologies if there's already a link to this elsewhere on the site. Any help appreciated.

ADG1403

Hello agd1403,
You are in fact the first person I have heard from who is to undergo surgery from the 'Bristol team'. Obviously there are others but we haven't encountered them on here unfortunately.
So a huge welcome firstly. As to answering your questions I can't but all information that you can pass on to us would be greatly appreciated.
As the team follow Professor Roberts TG technique I guess those who have had the op in Nantes would be the best to give specific answers. The only other British people to have undergone PN surgery have been under Professor Carlstead.
Romaine and Johnd.h did post but not in a while, hopefully they are now getting on with their lives.
Sorry I can't be any more help. The very best of luck with your surgery and recovery.
I would love to hear more of your story and of course how you do post surgery.
Take care,
Helen

Good morning AGD - and welcome to the forum from me as well!

I too am in the UK and waiting for surgery (hopefully) at Frenchay. I'd suggest that maybe it would be a good idea to contact Dr Wong's secretary, tell her that you are wondering about this, and is there any information that she could let you have? We do need to plan round other things in our lives, after all.

I know that when my turn comes (I hope it does) I am going to be as careful as I possibly can. When I had the mesh repair surgery, there was a very helpful handout from my surgeon - I will link to it - here. Very restrictive - that was for four weeks. Of course it is not the same surgery, but even so. My surgeon told me also that when patients asked him if they could do such-and-such post-op, he would give them one of his business cards, and say - the answer to all your questions is on the back of that card. So they would turn the card over, and there would be one word written there - NO.

Anyway - I'm sorry that I can't answer your question. But I do hope that Dr Wong's secretary will be able to get some helpful information for you.

And, like helen, I'd really like to hear more from you, and how things are going for you. Please keep posting!

AGD,
Welcome to one of the more confusing aspects of the sugery. I too wondered how it made sense to say it would take up to a year for recovery and yet I should be back at work in 4-6 weeks. I think the incision heals that quickly (externally) and some people even internally enough to return to work. I was not in that case and am still home from surgery may 9, 2011. So it seems I will fall to what I can see as a more realistic 3months or longer. I did see in this surgery section a posting of Dr Conway's post-op guidelines (you can search on guidelines) and another person posted another Dr but I can't find it at the moment. I would still ask your doctor but this may help you see what may be ahead. All the best to you.
Janet

Yes Janet that jogged my memory. I know Karyn posted Dr Conway's post op guidelines here http://www.pudendalhope.info/forum/view ... =44&t=1375
Hope that helps, I know Karyn had bilateral surgery. Of course getting guidelines direct from the surgeon as Calluna suggested would be best. It will be interesting to see if they differ much.

Hi there,

I'm not in England, but I did have decompression surgery with Dr. Hibner. The only difference that I could see in post-op activities was in the 1-3 week. He only recommends doing the 20 min. walk in small incre,ments. He also doesn't want any stairs during the 1-3 week period and then doing is slowly.

I followed all the instuctions very carefully and doing everything that I was told to do. But it is now 4 months after surgery and I can't sit. I am in more pain than before the surgery and I was climbing the walls in pain before surgery. I am beginning to agree with people that there is a group that needs more extensive surgery than mine was and mine was 4 hours long! Right now, I don't know if all my nerves are just aggravated due to surgery, to much damage was already done to the pudendal nerve, or if I am entrapped further along than Alcock's Canal.

My MRI said that I had a problem with the perineal nerve and they couldn't see anything on the pudendal nerve. I was very entrapped along the pudendal nerve, so what does that say about the perineal nerve!!!

Kate

Kate,
Have you tried opiates or Lyrica ? Side effects are tough for some but they really help me forget about the pain for a while and that's the bottom line. Pain really wears you out.

Best Wishes,

Don

Kate, I forgot where you had your MRI -- sounds like yours did not help much with the diagnosis.

I'm sure it seems like forever in your recovery but it's still pretty early to draw any conclusions. I couldn't sit for very long until 18 months after surgery so take it easy and remember it takes a long time to recover from PNE surgery.

Thanks all for your posts - all wise counsel, I will be contacting Dr Wong's secretary to seek further information, so will post on here if anything is forthcoming. Thanks to those of you who have also provided links to previous posts and other information about the surgery.

I'm struck by reading on the forum just how different recoveries have been from the surgery, it appears not doing too much too soon and listening to your body is the start point, and take things from there. Certainly looks as though I'm not going to be running round a tennis court for quite a while!

Helen - I'll add my history to my account settings when I get chance to review the timeline of treatment to date - gives me a chance to go through what is now a very large correspondence file! But my history does include familiar treatments and procedures I've read on here - Pregablin, Amitryptiline, Nerve Blocks, CT Guided and non-CT guided.

Thanks again,

Andrew

Hi Andrew
I'm in the UK and have suffered from PN on and off for about 9 yrs. My pain started in the rectal area like yours and after many tests was diagnosed with Levitor Ani Symdrome. I didn't have anal fissures but did have an anal skin tag removed, which I think did more hard and good. Anyway yearly 2 yrs ago now, following cycling holiday my symptoms became worse and more varied and constant. I now know this to be PN as I found this site and a good friend called Geoff (who is not longer with us) pointed me in the direction of Dr Greenslade. I saw him in Oct 2010 and have been on Lyrica ever since. The wonder drug I call it. I know that my nerve is not healing because I tried to come off it recently without success and I now have it bilaterally too. I can't help you with your surgery question but just to let you know I there are others out here in the UK. I would have no hesitation in going back to Dr Greenslade if I did need surgery though, which I think will be my fate one day.

Take care and keep us updated on your progress with the surgery. We are all very interested because we have not heard from anyone who has had the surgery at Bristol yet.

Cheers
Peaches