Pudental nerve pain

[Milly49]

I would like to chat with other people like me who have been diagnosed with pudental nerve entrapment or have pudental neuralgia in the hope that we can help and support each other.I have had this dreadful condition for nearly three years now .

[kalecolbe12]

What has helped me is the Facebook group pelvic floor dysfunction and pudental neuralgia and also the pudental hope.com site

[Milly49 in reply to kalecolbe12]

Thankyou you for your reply I am a member of these forums now so will hopefully find others like me.

[UnionJxck]

I've had it for 4 or so years, I hate to say but I'm not really doing any better, but there are loads of groups on facebook you can join where people share what helps them and what doesn't help. The complicated thing with this condition is that some things work great for people, and other things don't help at all. Just gotta keep trying things out. A lot of people get better by doing certain exercises/workouts.

[Milly49 in reply to UnionJxck]

I had my operation 18 months ago and I don't feel any better either.I am waiting for an appt with a women's health Physio and have just had another nerve block so am praying I see at least a bit of improvement soon.

[UnionJxck in reply to Milly49]

Hopefully. I had a pudendal nerve block 2 years ago and it didn't do anything tbh.

[willemine]

Hoi Milly ik heb het nu vanaf 2014 en ik kan zeggen dat ik het iets beter kan managen de pijn met het medicijn oxycodon en amitriptaline. Toch ik functioneer niet normaal kan niet zitten fietsen en lig halve dagen op bed. Ik zit aan tafel voor obtbijt lunch diner op mijn knieen op een yogabank met een plankje met gat erin ( zie foto ) en leun dan voornamelijk op mn knieen. De eerste jaren kwam ik de dag niet door zonder huilen van de pijn nu is dat beter omdat ik pertinent niet meer zit op stuit . Fysiotherapie oefeningen doe ik enkel om lichaam beter te kunnen ontspannen en de rest van lichaam te trainen. De zenuw is verder niet te beinvlieden met oefeningen ondanks de vele berichten die dat wel beweren. Ik heb 3 nerve blocks / zenuw blokades gehad die niets hielpen .Ik heb ptns ( zie internet) behandeling voor blaas maar dit is ook iets helpend met de pijn van pudendus. Als je nog geen amitriptaline krijgt zou ik daar om vragen het is een medicijn tegen depressies maar in lage dosering ook helpend bij zenuw pijn.

[Lib1956]

I found the books/podcasts by Anthony William medical medium really helped me with this condition. He talks a lot about the causes of nerve problems and how you can help your body heal.

[RobertVerde]

Here is a site that has lots of information along with PT & docs that specialize in the condition - some great info.

[Roxy000]

Me too... diagnosed with PN but cannot find the root cause. Going to pelvic floor therapy, have not experienced any relief. Was prescribed gabapentin but worried I will feel groggy and interaction with alcohol. My symptoms are tingling/pain in left leg and vaginal area.

[Spookie7]

I have been suffering from Pudendal neuralgia for the past 18 months. My symptoms are pelvic pain, mild lower back pain & urinary urgency/frequency. So far I have tried PT & stretching exercises but they haven’t made a big difference to me. I am scheduled to see a pain specialist at Stanford in August and we have discussed “ Pudendal nerve block” as a next step tool - primarily for a more accurate diagnosis and possibly therapeutic. Happy to share notes or answer any questions.

[Milly49 in reply to Spookie7]

I had a nerve block last week and it has helped my pain.

Good luck

[Ftm79 in reply to Milly49]

Hello! .. I have been suffering from pudental nerve aproximately for four years..I heard that a doctor team is very good in their work in...How did you become better?could you please get in touch with me ..

[Ailiesonkerr in reply to Spookie7]

Hi I would love to hear if you proceed with nerve block and how you get on. I have very same symptoms of you and have been unsure on whether to proceed with nerve block. My pain is worse when sitting and I sit down at work all day!

[UnionJxck in reply to Spookie7]

Curious. Did you get anywhere with this, are you feeling any better or any worse?

[Ailiesonkerr]

Hi interested in how you are getting on after your nerve block last week? I have been suffering very similar to your symptoms for like 3 years now and was at stage of Nerve block but read so many different outcomes - was it given to you also to ascertain if it is Pudendal Neuropathy you are suffering from?

[Milly49 in reply to Ailiesonkerr]

I think I am just starting to feel the benefit of the nerve block which I had nearly two weeks ago now.Initially it flared my pain up but thankfully it has now settled down.This is the third block I have had now.

I actually had pudental nerve decompression surgery 18 months ago but unfortunately I still suffer with neuralgia.

[Crofem]

Who did your surgery? Where? Were you happy with outcome? I read somewhere still takes several years for the nerve to heal, but might e more receptive to nerve blocks afterwards...?

I live in Toronto, ON, area and have only heard negative things about a Dr. Lemu on this site. No other names mentioned... Thanks