Pudendal neuralgia

[Bluetit63]

l've had pudendal neuralgia for some years now. I have seen many doctors , eventually ended up at UCL hosp. Had 1 nerve block before that which didn't work at my local hospital then 2 further,the first helped for a few months the 2nd not at all, I then got forgotten by the hospital. I did chase it up then COVID hit. Now I am struggling with shooting pain in my coccyx & itching which can drive me mad. I have to say I have had it alot worse but still an ongoing issue. Not sure if there is anything new out there to consider. I also struggle with vaginismus but I manage although not easy to have a realitively normal personal life! I don't think I would ever bother with another nerve block again. It was quite traumatic.

[lucikam]

Hi! Where do you have the itching exactly? I have itching for 3 years, no answers.

[We5t]

@Bluetit63 I think I may also suffer Pudendal neuralgia, and I often think it's being caused by my hemorrhoids (piles), as the nerve is linked. May I ask if you also suffer from Piles, as it would be interesting to learn if hemorrhoids play a part in this awful pain?

[pizon]

I can tell you works for me…I was left with p/n after a vaginal surgery..I take valerian root 2caps up to 3 times daily with hops also 2 caps twice a day…for 2 years I tired the medical nerve block’s which left me so numb it hurt and prescribed pills to the tune of thousands of dollars which left me with multiple side effects … I had to jump off their merry go round…also read the book “healing pelvic pain” by Amy Stien also the yoga dvd Your pace yoga by Dustine Miller…I also meditate I am very close to pain free I do have limitations but am so much better I am able to live with it now not able to sit for more then 2 hours but 5 years ago couldn’t sit at all…I do hope this helps I know we all suffer with this horrid condition in different ways but this has changed my life also acupressure helps some find relief in chiropractic care find one who is familiar with this condition

[slingman in reply to pizon]

what is the dosage of valerian root that you take? Doesn't it make you sleepy during the day?

[pizon]

it dose not make me sleepy during the day I think it ears the pain I will send you a photo of what I take

[pizon]

I am not able to post the photo?? I take now brand valerian root 500 mg and hops by natures way 620 mg…2 each up to 3 times a day it truly dose help

[Juliehh73]

I’m so pleased I’ve found this post! I believed this is what I am suffering from, brought on from years of chronic constipation (under gastro now) seen GP as nerve pain also in leg and back. However have to se physio before I can get a MRI…. Apparently new rule since covid.

Please could I ask how long it took for the valerian and hop to work? Many thanks

[We5t in reply to Juliehh73]

Juliehh73  Hi, I believe this is what I am suffering from as well.

I also suffer hemorrhoids (piles) and often think the piles are the problem, because the Pudendal nerve is used to transmit pain from the anus (piles) and along its root to the genitals in the form of neuralgia.

It would be interesting to learn if any one here also suffers from piles and has Pudendal neuralgia.

[Meze]

These symptoms sound so similar to mine.I had a total bladder repair at 57 years old due to major prolapse and incontinence and the surgeon cut the puedendal nerve.I could not walk far for a year.Now I try to only take painkillers when absolutely necessary.Weaned myself of all the others prescribed as the side effects were awful.

Thank you for posting other ideas for helping pelvic pain. I am much better after 3 years but like you can only sit for a limited time.I do keep moving in the day and gentle walking,rest ,warm baths and yoga helps.

My husband does not really understand

how sore and dry I feel by the evening.

I do try to rest in the afternoons if possible.

The most frustrating thing is which clothes to wear in the winter.Many tighter trousers hurt after a while..although yoga leggings are great.Not always suitable to wear out and look smart though!

Even the seams on some underwear hurts and rubs.I've lost count of the number of pants I have tried.It's so sad that I cannot wear tights and skirts any more.Sounds trivial I know...but it is important to look and feel nice,especially as I am still working.

I even feel uncomfortable at other people's houses if their chairs are too hard.

Lying down is great.Mindfulness helps and yoga breathing.

Take care.Sending a huge hug to anyone else suffering like this.

Sarah