Bilateral Pudendal nerve decompression surgery

Has anyone had this surgery? I had mine on 08/26 because 2 ligaments entrapped my pudendal nerve. I did not have pain in my genital area - it just went numb after a period of about 9 months. The doctor recommended surgery immediately because the fact that I went straight to numb and didn't have the preceding pain most have. I'm now a little over a week post op. Most people spend 3-5 days in the hospital - I was out in 2. My doctor prescribed bed rest for about 6 weeks. It's been torture. I have chronic damage to my L5S1 and the immobility is reversing all the PT I had before this surgery. What I want to know is how people felt after the c surgery. I get lightheaded when I get up and move around, feel very weak and unsteady, my blood pressure tanked from 130/80 to 101/64. I feel I should be more active (I've started getting up every hour and walking the hallway for 5 minutes) but I don't want to mess up my surgery. I'm just really concerned with the potential side effects from prolonged immobility - like blood clots, muscle atrophy etc. Any insights would be greatly appreciated. Thank you! Oh, I'm a 37yo female.

23 Replies

  • I haven't had the surgery so can't really help with that, but i felt really awful for about 3 1/2 weeks after my recent surgery. But then I slowly started to feel stronger, but it's a slow process. Don't rush it, be kind to yourself.

    Out of curiosity where did you have the surgery done?

    I hope you have a good support system around you to help, I can appreciate how hard the bed rest is. I do hope you start to feel better soon and the operation is a success. Take care. Xx

  • Thank you for your response - I really appreciate you taking the time. I had my surgery done at St. Josephs in Nashua NH. I'm from MA, & we have some of the best hospitals in the country, but this surgery is highly specialized and only a few doctors in the country perform it. NH was as close as I could get and the surgeon is one of the best in his field. I've had a few surgeries in the past, but they were minimally invasive (2 L5S1 micro discectomy's and 1 nerve repair on the middle finger of my left hand). Both surgeries required you get up and moving ASAP. I've been basically bedridden since this surgery on 8/26. My BP is much lower than normal. That could be the cause of the lightheadedness. I just get nervous because I have so many issues from the chronic damage to that lumbar nerve, I can't tell if the things I'm experiencing are from that, the surgery, or both. Or if I have a complication I'm not aware of. I'm going to call my surgeon tomorrow and see what he says.

    Again - I really appreciate you taking the time to respond, and thank you for the well wishes. I hope your recovery goes well too!

  • I have pudendal nerve damage/entrapment so may indeed be having similar surgery in the future. We don't have many people who do that surgery in the UK.

    Keep in touch and let us know how you get on and how you progress with your recovery.

  • People come here from all over the US - and other countries - to see my doctor for this. I don't know if it would be an option for you, but just in case - the doctor that preformed the surgery is Dr. Mark Conway. He performs surgeries out of St. Josephs in Nashua - but has a practice in Merrimack, NH. If you have to have the surgery - I wish you the best of luck if you do end up having to go my route. I will keep you updated so you'll know what to expect.

  • There are several people who have had the surgery on a Facebook group called pudendal neuralgia hope. It is very informative

  • When you say you have chronic damage to L5 S1. What do you mean? Is it the disk? Mine disk bad, and i had it replaced in Germany its call M5 ADR implant.

  • Yes. I've herniated at the same location twice in 2 years - and had 2 surgeries. The constant impingement on the nerve has caused chronic damage. I'm fairly certain I'm herniated again - but this surgery was a more pressing issue (in my estimation) so I'll have to deal with the ongoing back problems and associated weakness and muscle spasms until I recover. I'm sorry to hear we share the same issues, but I'm curious to know if the disc replacement has helped you.

  • Its Has made huge improvements with my C-6 C-7. The implant is called M6 ADR... there is a VERY good youtube video. The surgeon in Germany, was the most professional guy I' ve been to and Ive been to a few... Im in the US. I would recommed him to any one... However my L5 S-1 disk was bad and he replaced it along with the 2 in the neck. Its not helped with my leg issues.. But I think I have a combo of problems there. Do you have Bad disks?? They can be replaced don't let any one tell you otherwise.

  • No one has told me I can't have disc's replaced - they just haven't offered that as a viable course of action. Yet. My legs are a HUGE issue. My right more than left. Tingling, weakness, muscle spasms, numbness in my toes and feet. Can't sit or stand in one place too long or I'll end up in tremendous pain. I'll bring up the subject with my ortho next time I see him. Thank you for the advice and for taking the time to respond!

  • lets talk call me. Germany can give you a second opinion? If you have a current MRI?? they don't even charge you its ONZ in Germany. I gain nothing by recommending any one to them. As for me they fixed my neck its pretty much 90% I was in HELL before. They showed me my C-6 was touching my spinal cord.

  • If you would like to talk you can call me 513-435-0978 Gary

  • Edinsmore may I ask if the doctor cut any ligament to reach the nerve? and which approach did he use, transgluteal? did he cut your gluteus? thanks a lot

  • Yes he did have to cut a ligament. Two had fused, trapping the pudendal nerve. It was bilateral so I have 1 8" incision on each buttock. Recovery from just the surgery is expected to be around 6 weeks. I have 3 down so far. I am not allowed to sit at all (beyond going to the bathroom of course) or walk around much. I'm basically bedridden for the duration. I unfortunately also have chronic damage to my L5S1 and have had 2 surgeries for that in 2 years. The disc has herniated again and all of this bed rest has seriously exacerbated the back problems. I'll have to deal with that issue once I've recovered from surgery. I won't know how much feeling I'll get back for about a year.

  • I wish the best for you!

  • Omg same problem as u I thought I was the only person in the world I am on my 11 th since my abdominal hysterectomy that caused this horrible nightmare.I think I finally found the right doc . But I was wondering was your numbness internal ????

  • Both. Internal and external numbness.

  • Internal for me . That is what has got ever doc I have seen think it wasn't that. Is there awa to personal message u . I would love to talk more . I feel like I found my twin.I did research this doc about a yr ago he was out had hand surgery ???

  • It took me over a year to get someone to listen to me because they kept insisting that it was "extremely rare" and occurs more often in men than women. My nerve was sandwiched between 2 ligaments. And it was, according to my surgeon, due to my anatomy. A lot of doctors look for some sort of trauma first. And I had some trauma too. I had a bad fall right on my tailbone about 10 years ago. Then after I had my daughter, I had to have a D & C about a month later because they didn't get all of the placenta. Then I had to have surgery to remove adhesions in my uterus and fallopian tubes - again, more trauma, more scar tissue. Keep at them until they listen. What they need to do is give you a focused MRI on your pelvis and an EMG to test the nerve function. It's not pleasant - but it gives them the right info to determine if that's your issue. And they need to take it seriously because if that nerve stays impinged - you could ends up losing bowel and/or bladder function. A lot of people first experience pain. I went straight to numb - which is actually more concerning because it means the nerve is deadening. That's why he had me in surgery so fast. Now - if we compare this scenario to my back issues - I had severe sciatic pain. After surgery, I had immediate relief from the PAIN. But my toes are still numb and it could be years before I get the feeling back - if I get it back at all. So in the pudendal nerve entrapment case - I didn't have pain - I had loss of feeling. So it's going to take about as long as the back before I find out what, if any, feeling I'm going to get back. Nerves regrow about a centimeter a MONTH. So it takes time. I'm more than happy to discuss this privately with you - I'm not sure how to privately give you my email. ...

  • I am not sure how to privately send u my e mail first time on here so glad I found u. Going to look at the settings .I am def calling my new doc with your story tomorrows out of town but he was waiting for my mri report sadly I fought for 2 yrs to get one but every doc dismissed results off pudendal nerve

  • i am going to call your doc and see if they will allow me to give u my e mail and phone # i am sure even w out your name are case is so bizzare they will fig it out right . my name is kim so if u get a call from them it is me . cross are fingers . going to get kids on bus and will try to contact them in a little while

  • How are u doing now and improvement yet. Did they find what caused your entrapment' s I know mine was from hysterectomy because up till the ni)5 b4 surgery this was never a problem. I was devastated and have no answer and n one like me so I has been a he'll off almost 3 yrs and scared if it don't get fixed it will be permanent. If not already. I am too young .

  • I'll be 6 weeks post op this Wednesday. You cannot sit AT ALL for the 6 weeks following this surgery as it very intensive and you might damage the nerve. I'm not doing terribly well at the moment - but that's because I have severe back issues too and being immobile for 6 weeks has totally screwed me on that end. My wounds are completely healed and closed and I'm starting to get MINIMAL sensation. - which is encouraging this soon. But I'm by no means even close to having the feeling I had before this mess

  • How are u doing?

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