Treatment resistant pudendal neuralgia

[Pelviccrusader]

Hi all. So I have pudendal neuralgia Brought on by a lifetime of bicycle riding. At this point it does not respond to nerve blocks, trigger point Injections or Botox injections. Entrapment is an obvious concern. It has become clear that I need to search nationwide for the best doctors. So my question is does anyone have positive feedback on any of the top doctors listed at the pudendalhope Site Which seems to be the best one I have found so far? I would also be very interested to hear about innovative yet conservative approaches for cases which are resistant to typical treatments such as mine. Thanks for any help.

[jenmal]

Sorry to hear your case is so resistant.. it’s a nightmare. I heard good reviews about Professor Robert in Nantes, but haven’t been treated by him personally. They offer a surgery there, release the nerve if it’s trapped, but first they use their diagnostics to confirm entrapment.

[Debra13]

Hello,

I’m assuming if you had nerve blocks then you have already been diagnosed properly with PN. If not you may want to look into an MRN to get definitively diagnosed. I don’t respond to many treatments as well. I go for 2 nerve blocks a month just to take the edge off with no steroids. In your case, a physical therapist may be able to help you. Look into a good pelvic floor physical therapist. They were helping me for a little while but then my condition changed and it started to make me worse and flare me up so I had to stop going. How long have you been suffering with PN? Try to find a good doctor that you trust that can work with you and your condition. Also a doctor who really knows about the condition. Hope that helps a little. God bless. Deb

[Pelviccrusader in reply to Debra13]

Thanks Debra13. MRN did not give diagnosis but did hint at entrapment. Physical therapy has been a waste of time even though I'm optomistic each time I go. Have had PN since about 2012 and stopped sitting in 2015. thanks for the kind words-

[Debra13 in reply to Pelviccrusader]

I know how you feel. Nothing I do seems to work. Don’t give up. I’ve been fighting for 17 years now. Something is gonna break. It has to. Deb

[Pelviccrusader in reply to Debra13]

How Much are you able to sit? I had one Doctor Who told me to sit as much as I want because it would not do more damage. Other doctors say to not sit ever. I ended up listening to the first doctor, sitting more, And all that seemed to do was lead to more pain.-Emil

[Debra13 in reply to Pelviccrusader]

I can sit for 5 minutes only before the pain gets too severe and I can’t. Yes it leads to more pain the longer you sit.

[Debra13 in reply to Debra13]

A little bit of advice if I have to sit for longer periods of time I usually sit on my side with pillows between my thighs so that area doesn’t touch together. But I have to tell you after a while of doing this you start to develop hip problems also. But it’s better than the alternative I feel. Deb.

[Debra13 in reply to Debra13]

My best position of comfort is on my stomach but I also have back issues so this doesn’t last very long either. Wish I could be more help to you. Deb.

[Pelviccrusader in reply to Debra13]

your struggles sound alot like mine. Plus I have a strange foot neuropathy which limits my walking.

Does anybody in the community use these zero gravity chairs? I'm thinking of getting one so I can perhaps keep my job!

ergoquest.com/zero-gravity-...

[mle121 in reply to Pelviccrusader]

Wow, that's an interesting set up of screen and support. I think you would need quite a bit of space in your office to accommodate a zero gravity chair and all your colleagues would want to lie down as well. My work got me a Varidesk as I can't sit either, it is brilliant but by the end of the day my back and legs are aching from standing up all day but small price to pay for keeping my job. May be worth you looking into and probably cheaper too.

[Pelviccrusader in reply to mle121]

Great idea but I have foot problems as well. Lucky me

[AdeleS586 in reply to Pelviccrusader]

I have a standing desk for work. After two rounds of pelvic floor physical therapy, my pudendal neuralgia has greatly improved. I can sit for a few hours at a time without it affecting me as long as I do my therapy at home everyday.

[Rocky68]

I have been diagnosed with Pudental Neuralgia. Symptoms are perineum burning, spasms, rectal pressure and low back pain. You can read my previous posts regarding treatments. I am beginning a Dorsal Root Stimulator trial scheduled for December 1. I will post results . Rocky68

[Pelviccrusader in reply to Rocky68]

Thanks very much

[Debra13 in reply to Pelviccrusader]

I had a trial of the stimulater. I honestly don’t think the doctor put it in the best area it could go in though. It was at the levels of T8-T12 which did help my back pain with my pain in the legs but unfortunately it made the pain in my vagina and rectum worse. I should have got a DRG stimulater which is what I thought he was going to do but he said this set up would cover that also. I don’t think that is really what occurred but I’m not a neurologist or a doctor. I am going to consider another trial of a stimulater but with a dorsal root ganglion stimulater possibly in the near future.

[Debra13 in reply to Debra13]

If you can keep me posted also how the dorsal root one works for you that would be great. God bless us all who suffer from this monstrosity we live with. Deb

[Rocky68 in reply to Debra13]

Debra. I just posted review of DRG Stimulator today. The actual DRG Stimulator he will use will be the Procaim model. If you have questions let me know. Rocky68

[Debra13 in reply to Rocky68]

Hey Rocky ,

I do have a question. Where are you getting this done if you don’t mind telling me. I got mine done in New York at the Ainsworth Institute. But like I said in my previous post about this it made the vsginsvsbfvoeeirrctal space much worse than I was before. So, if you don’t mind I would love to know. You can PM the information if you feel funny about posing it. Thank you for you reply and God bless you. Deb

[Debra13 in reply to Debra13]

Rocky68,

One more thing. I was sent to the other surgeon in the ainsworth institute because he didn’t take my insurance. So, I didn’t get the better surgeon. Imagine. Very frustrating. Deb

[AuntieH in reply to Debra13]

How do you PM someone?

[Rocky68 in reply to Debra13]

Debra. I had my DRG Stimulator Trial at Moses Cone Surgical Center in Greensboro NC. I did not have any vaginal pain. My Pain Dr is with Neurosurgery & Spine Associates. I don't know if naming Drs is allowed on this site but if you want to give me your email address I can contact you that way. I hope I was clear with pain relief. Back pain is gone but I still have twinges, nerve spasms near rectal area but they are 30% better and I'm hoping in time to get more relief. I will post again once temporary device is removed if I truly was getting benefit from device. Four leads were at S1 and S3 sites. I will say before trial I was in floor most nights with horrible spasms and I have not been in that much agony. I do continue with 75 mg of Lyrica twice a day since Dr said I should continue meds during trial. My Dr did say that perhaps 400-600 Drs only were certified to perform the DRG surgery. Rocky68

[Debra13 in reply to Rocky68]

Thank you rocky. Yes can you PM me. I’m going for procedure but I’m not 100% sure it will help and don’t want to give all of you false hope yet. If it works believe me I’ll scream it from the mountain tops so that everyone knows it. If it doesn’t it’s good to know there is still hope out there. God bless that you are feeling better.

[kalecolbe12 in reply to Debra13]

I realize this post was two years ago but if you're still on here I was wondering if the stim worked for you and what else did you try?

[Debra13 in reply to kalecolbe12]

Hello. I have tried 3 Stimulaters. The last one did work for me until my bladder went into spasm and my pain got bad again. I have interstitial cystitis also. I was feeling great until that happened. It was 3 day’s of relief My doctor is gonna do another one on me when this virus is gone but it’s going to be a DRG Stimulater. He thinks this one will be the key and so do I. I hope that helps you. Good luck ❤️Deb

[Debra13 in reply to Rocky68]

Hey Rocky. I’m gonna private message you with my email address ok. Thank you Deb

[AuntieH in reply to Debra13]

Hi Debra, can you private message me with your email also? I'm relatively new to this and would like any advice you can give me. Thank you!

[prinx in reply to Debra13]

I think you need the stimulator in S1-S3 or 4 which supplies the pudendal area.

prinx

[Debra13 in reply to prinx]

Prinx,

I don’t know if your response was for me. It’s really hard to find a doctor that has a good reputation in the New York area that can do that procedure. Not many out here will do that. I will try again to find someone. You see what happened the first time I tried. Thank you and God bless you. Deb

[STUBBORNGIRL7368 in reply to Rocky68]

Following

[Debra13 in reply to STUBBORNGIRL7368]

Where you been. I texted you. Sorry it was so early in the morning. I’m losing my mind. Please get In touch with me. I hope you aren’t upset with me.