Laparoscopic pudenal nerve decompression surgery

[1980natty]

Has anybody had laparoscopic pudendal nerve decompression surgery? I had this surgery last December and I’d like to speak with fellow sufferers and your experience so far. Thank you x

[swarke22]

It didn’t help me, but not sure now it was true pudendal nerve entrapment. As we get older, we get muscle loss, which causes bone movement and never entrapment. PM me I am just starting My own new trial, paying for this myself. I have been on this journey since 2011 operated in 2013 bi-lateral pudendal nerves. Did nothing. My osteopath, says my muscles are weak. I am 65. Have fibromyalgia and bad back problems.

[kalecolbe12]

How did it work for you?

[1980natty in reply to kalecolbe12]

It was amazing to begin with, for the first 3/4 months I was doing great! Back in jeans and walking but this last couple of months I’m going backwards ... struggling to stand and walk and jeans are a no go again! I really want another nerve block. My pelvic floor is playing up again and hypersensitivity coming back ... I just want some positive feedback stories please to help me along. I can’t bare any horror stories x

[Dog2paws]

May I ask where you received your surgery?

I am thinking of contacting Nantes or the U CLH for treatment for pudendal Neuralgia .

I don’t know which is the best place to go to .

I obviously would prefer not to spend a fortune going to Nantes if the treatment can be provided in the UK’.

I hope you don’t mind my asking .

[lucyp]

Yes I had laprascopic decompression eight years ago in Istanbul.

It did give me a small amount of benefit after around six months.

Got most improvement fro monster walk, has changed my life.

Lucy

[1980natty in reply to lucyp]

Oh that’s great to hear! What is monster walk?

[1980natty in reply to lucyp]

Can I also ask was your surgery through your tummy? Can you sit/walk/stand/wear jeans etc? .... I was doing so well at 3/4 months but at month 8 I’ve taken a rapid turn for the worst. I just don’t know if this is normal?

[lucyp]

My life now is pretty good. I can wear jeans,do long walks and go places. Sitting remains difficult so I take a doughnut cushion with me to restaurants cinemas etc.

I also know my limitations do not lift anything heavy and am generally careful about what I do and how I do it.

I manage on small dose of pain relief and no longer have the suicidal pain that I endured for so many years.

The monster walk you can goggle, it’s basically stretching the hips laterally, which to the best of my amateur knowledge stretches the culprit muscle sorry can,t remember the name of it.

I have learnt over the years that the more improvement you can get the better your mental state is then this feeds back to your muscle tension, of course it also works the other way. I also do yoga and walk every day for general fitness.

The monster walk does not seem to help everyone I guess for me it was just a lucky strike.

I wish you all the best with this ghastly condition.

Lucy

[Konagirl60]

Lucy, I’m glad you’ve seen improvement. Did you have entrapment and where was it?

Trans-gluteal surgery helped save my life. I had a serious entrapment and I’m lucky the nerves were released and I’m alive. This almost killed me from severe sleep deprivation. No medicine touched the pain; I was left sedated for years.

I’m trying to walk more, I use a donut seat and I’m still requiring pain meds and a sleeping pill. It’s a long recovery and I’ll never be 100% again. I’ve accepted it.

[HappyGreenBean in reply to Konagirl60]

Hi Kona, I know this is an old thread but I wanted to ask you how you're doing now? And, how'd you get to the point where you were able to find out it was trans-gluteal? I'm presuming you went to Dr Nantes? I'd be really interested to hear your experience and hear how you are now. I hope you've continued to get better.

[Konagirl60 in reply to HappyGreenBean]

I didn’t go to France. I saw a neurologist out of province ( I was gas lighted and neglected where I live ) who referred me to the best in Minneapolis, Minnesota.

I stood up all day for 20 months and sat on ice in my car. I used capsicum pain patches to sit in my car and on chairs when I couldn’t stand anymore.

I had decompression surgery done 3.5 years too late. He cut my right buttock near my perineum/ butt crack and released my right pudendal nerve from ligaments and fascia it was stuck onto. Transgluteal approach is the terminology used in my surgery notes.

I’m much better ( no more burning pain ) but I’ll never heal 100%. I think a sacral nerve root has been permanently damaged. I have trouble sleeping , lying down and sitting due to intractable throbbing pain.

[HappyGreenBean in reply to Konagirl60]

Hey there, this is great news. Not 100% awesome news, but being better than you were is great. I'm very happy for you. Thanks for the update. I'd be interested to know a bit more, if you'd be up for that?

[Konagirl60 in reply to HappyGreenBean]

What do you need to know?

[1980natty]

So pleased for you Lucy 🙌🏻 I only pray I’ll feel

Like you again one day, I had laparoscopic through my tummy in December and although I was doing so well I’ve gone backwards but like you and konagirl60 I’ve been suicidal- and very nearly succeeded but I’m still here .... 8 months on I thought I’d feel better not worse - at 3/4 months I was brilliant!! Just don’t know if it’s normal to go backwards and if so why?

Good on you girl! Xx

[lucyp]

Yes I think acceptance is a big hurdle, although when I was in severe pain my head was incapable of anything positive.

I can,t remember where he said it was badly trapped but I believe in hindsight the biggest problem was the excruciating muscle spasm which I have overcome with stretches. This was squeezing the nerve. My grasp of the components which contribute to this pain spectrum has increased significantly with time and endless treatments.

My heart goes out to all those with this terrible condition and I really hope everyone finds their way through it

Lucy

[saintonhigh]

Did it work?

[Jenfer91]

Hi, where did you have your surgery and can I have the contact details 😊

[1980natty]

[e-mail]

[e-mail]

You’ll have to go through tonnes of security etc which is a nightmare, dr Bautrant is great. He’s fixed many people. I’m still on my healing journey.

Copy your emails to both these addresses

Good luck 😉