Have any males had successful pudendal nerve Décompression Surgery in Nantes France please

[Humming]

This is a question for males with pudendal neuralgia/ entrapment. Have any of you had pudendal nerve décompression surgery in Nantes in France and was it a success? I am considering this after suffering for over 3 years now ( I have tried endless treatments and seen a number of specialist pelvic physiotherapists in UK without any improvement) It would be great for any feedback as struggling to find any male success stories. I have the drs statistics but it would be good to have some real experiences. Thanks

[Arny1973]

Hi humming have you looked into mindbody connection . Pain reprocessing . Saved my life from this condition . The way out from alan Gordon

[Humming in reply to Arny1973]

Hi Arnie, thanks for your suggestion. I signed up to the curable app ( I think there is some affiliation with the book you mention) over a year ago and stepped up the exercises (meditation, somatic Tracking, visualisation etc in Sept last year) I try and do at least one of these on a daily basis. I haven't seen any significant benefits however I'm still going to continue. Sometimes i think i am improving then a flare up hits you - it's a roller coaster of pain and emotions. I really don't like not being able to sit as it rules out so many things in life. I will persevere. I'm glad it helped you. How long did it take you before you saw any benefit? Is there any particular bit of the book you found especially useful? Thanks

[Arny1973 in reply to Humming]

The somatic tracking helped me most and I had several sessions with Jim Prussack ( virtually ) One of the most important things he taught me was telling your brain your ok . It’s just a sensation it can’t damage me it’s not dangerous and settle down brain your ok . I think really it took several months but I have a pretty normal life now despite some pain from time to time and have ditched the many cushions I had been using to sit etc

[Yorkdafs]

Hi Humming, I would also like to hear from anybody that has had surgery in France. Similarly I have been managing PN for three years with medication. My symptoms have changed over time but sitting normally is still out of the question. Walking was never a problem but groin pain now hinders that. I’m tempted to go for surgery even though the succes rate seems quite low. Love to hear anything to the contrary!

[RobertVerde]

Sorry to hear you have been suffering so long. Surgery is a last ditch effort for sure. I am guessing you have tried PT and different drugs like Lyrica? Have you read this book “A Headache in the Pelvis”?

[Humming in reply to RobertVerde]

Thanks Robert. Yes tried specialist pelvic floor therapy internal and external. Seen 5 different physios over 3 years. Been doing a number of different stretching routines daily without fail for nearly three years. I have headache in pelvis bookand curable app. I have recently completed male pelvic pain management course run by UCL in London. I have had nerve blocks etc . I have managed without pain medication as pain levels only reach 5 out of 10 in my worse flare up. Pain is not normally continuous except in flare up. I have pain In the perenium when I sit every day. I can manage around 20 minutes sitting before I can't sit any longer. Some days pain levels are only around 2 out of 10. Yes agree an op is the last resort which is why I need to find out more about success and fail rates from men that have gone through it. Have you had the op or do you suffer from pudendal neuralgia?

[RobertVerde]

Hi Back - I have had this issue for about 5 years - it started off with a little pain here and there with the PN - I think it was initially from an injury - progressively got worse - went to about 10 urologists - all had no idea what it was but refused to admit it - all put me on Cipro for way too long - dangerous drug as you know. I finally found someone in the US at the Cleveland Clinic - Shoskes who has since retired - who knew what it was right away. he got me started with PT while I was there. Luckily I found a PT close to where I live that has been amazing - she saved my life for sure. I had about 2 - 3 years where the pain was unbearable - I thought about ending it too many times - my wife and a close friend kept me sane. I do not take it for granted. I hope you find a way to feel better. Here is a site to review: pudendalhope.info/ - there is hope and help out there. Get well soon!!!

[Humming]

thanks

[Arny1973]

I found pudendal hope anything but hopeful Try listening to Dan Buglio pain free you . He talks about pn quite a bit and how it can be overcome

[Humming in reply to Arny1973]

Thanks for your advice and its really great you have seen some good improvement. Out of all the mindfulness exercises I prefer somatic tracking. I will try to do more - I'm not one to give up easily. How many times do you practice somatic tracking a day and for how long? I will definitely look into the book you recommended and Dan Buglio. I have been through those websites( pudendal hope etc ) a number of times and while they can provide practical info which is helpful in understanding the condition- they can be scary and there are not so many positive experiences posted. I suppose alot of people who had reductions in pain or have been cured don't post about there experiences. What is difficult about this condition is it can effect people in different ways and the benefit from treatment options will also vary from person to person. There is no one size fits all - its trial and error and that can be expensive. It's a shame there isn't a database where we can upload our symptoms and what we have tried and for how long and what has and hasn't helped. This should be objective and factual. That may help newly diagnosed people prioritise treatment options eg they could try the most % effective treatments first. The medical world is not very joined up and it is confusing when you get conflicting opinions from specialists once you have been diagnosed. Anyway I am rambling.

[Arny1973 in reply to Humming]

The likes of Dan Buglio and Howard Schubiner believe pn is a mindbody illness where the pain has become stuck in the neural pathways and your brain can be retrained . I believe I have conquered that I don’t do somatic tracking anymore really I just reassure my brain I’m ok if I have pain now and usually it doesn’t hang around for long .

[Hidden]

Hi Humming, I hope you are well. I came across your post regarding PN surgery and I agree with you. It looks like most of the posts are negative, no one puts positive outcomes. It would be nice if someone can let us know if they have been cured by the surgery to give some hope to us who are still struggling and considering surgery. Are you still considering surgery in France?

[Humming in reply to Hidden]

HiI've recently been to France for a diagnostic nerve block and I have to keep a pain diary for a few weeks before returning it to them. Then I will need to make a decision whether to go for the op. However I wasn't completely pain-free while anaesthetised- still had some perineum skin burning which suggests it may not be entrapment but I will see what drs say. The problem is you have to be in quite high levels of pain just before you have the block and for some strange reason I wasn't even though I was sitting on granite seats to make myself be in pain before. Normally pain levels would go up but on this occasion they didn't. I had a huge Flare after block wore off partly due to stress caused by cancelled easy jet flight and sitting on the flights. I do have a cushion that helps me sit for a bit longer but that didn't help on this occasion.

In answering your Michael Durtnall question I saw him and then his physios for over a year. I had internal physio as well as external during this time. I stopped last September. I like to give things a good go but I didnt get any improvement and spent lots. Saying that we are all different and the causes of why we have pudendal neuralgia could be different so it is worth giving him a go. He will xray you to see if there are any skeletal issues then will probably referr you to his physios. Physio should help if you have tight muscles - I didn't and am very flexible so they were baffled after nearly a year of physio. Anyway they may help you.

[Hidden in reply to Humming]

Thank you so much! I will give a go and see. Also seeing a pelvic floor gyno in Sept to check if that can help. I hope you are feeling better now and keep us posted re your surgery 🙏