Health Organization for Pudendal Education

Hi, I am new to this site and am struggling at moment. Today i have been reading about peoples experiences with surgery for pn and if its something i should consider. It would be my last option as have explored all others and still in considerable pain. Yesterday was my darkest day yet and but for the kindness and care of many who responded last night things might not have turned out great. I am keen to know as much info on surgery as poss. People appear either dead against it or very much for it. As well as opinion how do the stats add up. Does it work for majority? I read Prof Robert in France boasts a 86% success rate and those who dont improve he feels did not have pn. Do you regret having surgery? Many Thanks. M

Marcus, I'm very happy I had surgery because I've gone from lying in bed most of the time to having a job and a very happy life but it's true that not everyone has a successful outcome. According to numerous publications on all of the different approaches, the majority of patients see at least some improvement although not necessarily a complete cure.

It's important to research the different approaches and the different doctors to determine which approach is likely to be the most suitable for you.

Hi Marcus,
As Violet said the majority see at least some improvement from surgery but there are the complete cures, the much improved, the slightly improved, the not improved, the the worse.
I think the outcomes should be getting better because there are more tools becoming available to figure out your underlying cause. I am waiting on a whole different kind of surgery, to remove tarlov cysts from my spinal cord which are pressing on my S2 nerve roots. Prior to getting on the waiting list for that, I have already had improvement through manual therapy correction of joint dysfunction. So since my underlying issues are atypical, I doubt I would have been a surgical success if I had worked under the assumption that PN = decompression surgery.
If you have the resources to do so, I think there is something to be said for trying to unravel your underlying issues before signing up for decompression surgery. If becoming a "PN detective" is too overwhelming for you, I would say by all means look into the various surgeons and techniques and get it done; there is a good chance that your outcome will be positive.

Thanks Violet, really helpful info. Before i make decision over surgery i read that there is a general worsening of symptoms as the years go by. Pain feels tough now so imagining further decline hard to contemplate. Is this correct? Also i read many on here like myself are on pain med. Is this a lifelong requirement with pn. I struggle taking any med. Marcus

Marcus,

Contemplating surgery is a very difficult time for us to cope with, but if your pain is so intolerable and life has nothing to offer you, then surgery may be the very last resort. The choice was easy for me as my pain consumed my whole entire life as it does with most of us here on this forum. I was also confined to bed on a daily basis with no diagnosis. You can view me talking on youtube about my decision to have surgery in France. (I'm from Australia and surgery was not available here back in 2007.) It is now, thanks to the few specialists who cared to take on the research. Below are the links to myself and Prof. Vancaillie talking about PNE. I don't regret having this surgery as I'm about 80% better. Not completely cured but like Violet, I'm working, socialising, planning holidays and generally cope with the little amount of pain I have left. It's been a very long, painful & difficult road to recovery (4 years since PNE surgery) but things did improve slowly and I never gave up HOPE that things would and have gotten better. I'm off most medication only taking 25mg Lyrica at night to help me get off to sleep quickly as I'm up at 5.30am every day. There are people who got worse after surgery and that could possibly be due to many different factors. It is known that the best candidates for a good surgical outcome are those who are : Under 50 years of age. Pudendal nerve pain for less than 7 years. Are not depressed and have a good family support network. It's a gamble I took and it paid off. Surgery used to be done in 1 out of 3 patients but I think it's now 1 in 10. Sometimes the nerve is too badly damaged for surgery to be a success, but there's no way of telling if the nerve is damaged beyond repair or not. For me, it was the best decision. I had run out of options and had to take the chance that surgery would help.

http://www.youtube.com/watch?v=eJUNKmurUoA

http://www.youtube.com/watch?v=juAve2pN ... re=related

http://www.youtube.com/watch?v=5E2LjVRO ... re=related

Marcus40 wrote: Before i make decision over surgery i read that there is a general worsening of symptoms as the years go by. Pain feels tough now so imagining further decline hard to contemplate. Is this correct?

Some people get worse, some don't. I've known people who have had mild PNE-type symptoms for years without a progression in pain. If pain is mild and you are careful you might be able to keep it from progressing but for some people that could mean not sitting much for the rest of your life.

Thanks Catherine/Violet. You suggestions and comments really helped make sense of things. I didnt know only 1 in 10 opt for surgery, thought it was lots more. Also thought everyone gets worse in time. Has given me hope. Guess tied in with this is that not everyone who comes to this site who thinks they have pn may indeed by suffering from something else. Thanks again, Marcus