Pudendal pain - Can’t stand / walk / sit

[1980natty]

Hi, I had Pudendal nerve decompression surgery on the right side, after 3 months of recovery I was back in my jeans, walking and standing! I could even sit for a short time. Very quickly my pain returned... I’m housebound. I have been back to the surgeon who assured me my nerve is free and perfectly liberated ... so why can’t I stand and walk?? Any ideas anyone please? I feel like my vagina is being slit open when I stand up, it feels like it’s trapped still. But the colour Doppler says not.

Thanks for your time

[Ailiesonkerr]

Hi I am so sorry to hear you have been suffering so much. I also suffer from Pudendal Neuropathy..... I say I suffer from this as it is such a bizzare thing. Initially it was thought to be Vulvodynia, but then I was sent to pain management specialist who was first to mention Pudendal Nerve Entrapment/Neuropathy, but he said the only way they could totally confirm was to do a nerve block.... I had heard good and bad reports about this so I did not want to pursue this. Mine all started as I sit all day at work, then like you, could not wear jeans, anything tight, no tight underwear!! I am on Amitryptilline tablets at night, but then was finding not even sure they were working! I did find a good pelvic floor Physiotherapist who helped initially (basically because she totally got everything I was talking about) and I was so elated as I was beginning to think it all must be in my head. I now have good days and bad days.... try to be so gentle with everything.... getting in and out car/sitting, the littlest of things can trigger it off. I think the vulval pain is because the nerve endings around there are so heightened and sensitive that it is referred pain..... I know this does not help you and I do not know what to say that might help, just that the Physio just kept telling me to do relaxation techniques and not to get too overwhelmed thinking what have I done to start it off etc..... she suggested relaxation breathing techniques/ yoga etc for stretching. I know you may not be able to do that, but maybe try lying on floor doing breathing techniques and calming yourself down and taking time for yourself. I do hope you get some kind of respite.... if you have any questions just holler...... good luck x

[1980natty in reply to Ailiesonkerr]

Your very kind to get back to me, thank you so much! Yes before my surgery I went to physio twice a week and I was stretching every day my nerve blocks were brilliant and really helped when they were working I could even put tights back on but they didn’t last very long however prior to my surgery I could walk and I could walk long distances no problem without any pain whatsoever my pain was only brought on by sitting and wearing anything but 100% cotton, it’s only post surgery that I have developed this problem with my walking and standing at my surgeon says it’s due to hyper sensitivity of the nerve, I have had accident on the block after the surgery last year and that was good but my latest one in January still hasn’t kicked in yet. I’m just looking to the swimming pool is opening as I find that swimming really helps and it’s a release from Pain with the floating but I wish somebody could come up with a suggestion as to what the whole not being able to stand and walk scenario is, I’m trying the mindbody techniques TMS and I’m doing my best to focus that this could be my brain sending the signals are not something physical but it’s definitely not easy to switch the brain when it’s been thinking and damaged for so long, I wish you all the very best in your recovery and I really hope that you get the answers you need, maybe you would consider going to France and having a colour Doppler test to check whether or not you’re entrapped because I’d hate that you ever wound up to get to the point where I ended up due to lack of diagnosis xxx

[Ailiesonkerr in reply to 1980natty]

Hi Thanks so much for your reply. So do you think the nerve blocks helped you? I have asked the question of the forum if anyone knows if botox injection would work again I have heard mixed reactions for people to this. I have not heard of a colour Doppler test could you let me know what that is? I am in Aberdeen, Scotland and the pain management specialist that I saw suggested the nerve block.... but did confess he had never done it before

[1980natty in reply to Ailiesonkerr]

I had the colour Doppler test with dr Bautrant in France it’s checks if the nerve is compressed or trapped - good luck! X

[Desperateforrelief in reply to 1980natty]

It sounds to me like your PN nerve is damaged. I had the same symptoms. I get botox shots into the pelvic floor (excruciating for 1 min) but I get 3 months of great relief (not perfect) some days pain is 0. It goes up a lot before next shot is due. I was bed bound for several years. This nerve controls bowel, bladder and sexual functions. Terrible nerve to get damaged. I also have an interstim. I'm about to get it changed to the other side. When I got the last one I could sit right away. One of my leads broke. I find I get great relief from sitting in a hot tub. Sometimes I don't want to get back out. I've read they are now freezing the pudendal nerve and having great success.

[Ailiesonkerr in reply to Desperateforrelief]

Hi thanks for your reply do they do your Botox injections on NHS? What does the interesting do is that to do with pain relief?

[Ailiesonkerr in reply to Ailiesonkerr]

Sorry mean what does the interstim do?

[Desperateforrelief in reply to Ailiesonkerr]

The interstim helps with pudendal nerve pain. They say it doesn't, but it has been tested for that. Dr. Kenneth Peters wrote an article on how well it worked with pain. I was able to sit for over two hours after not being able to sit for 5 years. Gradually it got better and I could sit for as long as I wanted. Nerve and muscles work together, so botox relaxes the muscles (in the pelvic floor, for me) and the nerve calms down. Sorry, I am in the USA and I don't know how the NIH system works. I am so sorry for your suffering.

[Desperateforrelief in reply to Ailiesonkerr]

Botox is not covered by my insurance, so I pay $1,232 a quarter for it. Expensive, but it gives me my life back.

[Red1974 in reply to Ailiesonkerr]

That deals with urgency and frequent. I do the Botox all the time

[Red1974 in reply to Red1974]

My insurance pays for it.

[1980natty in reply to Desperateforrelief]

Hi, thank you for your message, yes I’ve had Botox in the obturator muscle and I’ve had cryo therapy to freeze the nerve but it made me worse, dr Bautrant assures me my nerve isn’t damaged and I have had EMG test ... where did you have your Botox? What muscle? Dr Bautrant thinks I have central sensitisation and I am following the TMS work to try and re train my brain out of pain - I’m waiting for the lockdown to end so that I can go swimming again as this gave me someRelief and I’m on a list to have neuromodulation so I pray that helps too! Where did you have yours fitted? I’ve been told it could take a year to wait for abs it’s only a 60/40 chance of working so I really hope it helps. My main issue I worry about is standing and walking im sure the sitting will come with time but I have to be able to stand and walk 🙈

[Desperateforrelief in reply to 1980natty]

I get my shots in Brookwood Baptist Medical. Located in Homewood, AL.. I didn’t know they could test the nerve. My understanding is they do a nerve block on the PN and if you're pain free - that is the source. The nerve blocks have taken away 100% of my pain. He does the interstitial spaces between nerve and muscle on the obturator and by the piriformis.

[1980natty in reply to Desperateforrelief]

Yes the nerve blocks do help to diagnose entrapped nerves but also neauralgia, I have had success with nerve blocks since my surgery but dr Bautrant assured me my nerve is free on all its pathways the test is the colour Doppler ultrasound- manybe Google dr mollo & dr Bautrant colour Doppler scan.

[Desperateforrelief in reply to 1980natty]

I know he is an expert, but respectfully I disagree with him. If you get complete relief from the block then either the PN or one or more of the branches that come off of it are damaged. Dr. Peters told me he has helped a lot of people who had an entrapped nerve released and. were still having pain. Blood flow isn't the only condition that can cause pain. On the bright side our nerves tend to mend themselves, but it takes 11 years for a nerve to grow an inch.

[alainahoppy in reply to 1980natty]

Did you ever go to Eric for surgery? If not what has helped.

[alainahoppy in reply to Desperateforrelief]

May I ask where you go for your botox and where they inject - injection site please?

[Desperateforrelief in reply to alainahoppy]

I go to Birmingham, AL for PN nerve ablation and I get botox shots into the pelvic floor. (Through the vagina- hurts like crazy for 30 seconds and then eases off). Other women have told me that they get theirs with sedation. But I've also heard it works better when you can guide where the shot goes - where the pain is most intense. But I say I'm 90% better. I can do most things. So this combo is working for me.

[alainahoppy]

Which hospital in Birmingham does ablation and botox please