Pudendal Neuralgia Survey

[Marion35]

I am on a mission to get more awareness research and training for the medical profession for the condition Pudendal Neuralgia. Just a short survey , how many members of this support group were diagnosed with PN following a vaginal hysterectomy back and front prolapse I look forward to hearing from you

[kalecolbe12]

Pudental Neuralgia seems to be caused by many different things in my experience.i am I'm pelvic floor pt in which I have tight pelvic floor muscles where my pudental nerve has to be released...my pt is doing pudental nerve gliding which is definately helping,and we are almost 4 months in.She does external trigger release and some internal...I am also on muscle relaxers to release things...it's a very complex diagnosis to a very complex part of the body and takes a long time to correct.We have Dr Hibner here in Phoenix who is a pn specialist.He does a 3d imaging and either refers people to a pelvic floor pt and/or does Botox in the pelvic floor to force relaxation....as I say pn can develope several different ways

[Moomoosmum]

I agree with kalecolbie. We are all different and might have different symptoms of it and it's effects. I diagnosed myself and took the printout of what PN is (from the NHS website!) and took it in to GP on my next appointment.

I haven't had a hysterectomy or a prolapse (to my knowledge) but am awaiting an emergency appointment with a proper specialist pain management consultant

[pizon]

I was diagnosed almost 1 and 1/2 years after my prolapsed bladder was sewn up no mesh was used and the pain I was in for the 1 and 1/2 years was hell..I now will not let any dr. near me other then my yearly

[Whangareinik]

I was diagnosed in New Zealand, following a hysterectomy it has been sheer hell for the last three years, constant burning sensation down below, chronic. I was lucky to a certain extent my Surgeon put her hands up and admitted damage so I am covered by insurance for treatment meds and everything else that goes with it. Hell on earth. I can barely walk, sit for periods of time and my life has changed on every level including intimacy. Good luck out there. I was told 0.003% of people in the world will suffer this. I know three already in my home town...wtf?

[pizon in reply to Whangareinik]

Yeah I'm with you I think it is much more common than the dr.'s are letting on. I've had dr.'s tell me it was interstitial cystitis and wanted to do unnecessary surgery for a problem that I didn't have I just wonder how many other people have not been properly treated and or diagnosed....

[trevormorgan]

Not relevant, am male

[Adele1 in reply to trevormorgan]

Men have Pudendal Nueralgia too. Not as often.

[trevormorgan in reply to Adele1]

Result of trauma injury and got progressively worse over the years.

Had surgery gave me a great reduction in pain and now manage by avoiding too much sitting, ice bath daily and mindfulness.

Does not stop me hating the bloody thing....

[AdeleS586]

Nope. None of the above. Diagnosed in December of 2015, after switching in August of that year from a standing job in retail, to a sitting job in an office 8 hours a day.

[Artsy74]

Mine started after I fell on my tailbone, but that was 10 years ago and then I had another fall the next year where I blew 2 disks and it got even worse. I also had a hysterectomy in 2014. I just got diagnosed this year with Pelvic Floor Myalgia and pudendal nerve issues (2019) and am struggling now with how to manage the pain what type of treatments to pursue. I am in PT with pelvic floor person and taking pain meds in suppositories (new thing) as well as gabapentin (which I have been on for years). I see below that kalecolbe12 has the same Doctor in Phx area that I do. He is suggesting Botox for me, but I am in the process of deciding about that. Pain will really make you open to allot of different things!

[Daniella4]

I have pudendal neuralgia due to a fall

[Marion35 in reply to Daniella4]

Thank you Danielle

[elleebelly]

Hello there

I have what seems to be Pudendal Neuralgia and a hypertonic pelvic floor since my total abdominal hysterectomy back at the end of November 2018. Still not officially diagnosed, purely, I think, because no one actually knows in South West Wales! It was my physiotherapist that suggested that it may be that after he'd researched. I had read up on it before he mentioned it. I've seen a women's health physio specialist but she feels she can't help any further. We tried internal release but it was too painful. I'm taking Pregabalin 600mg daily. Having an awful flare up at the moment so taking Oramorph and not moving far from my heat pad! The nerve pain is all on the right side, going down my leg into my foot, through groin and hip. Then going up into my right flank and almost feels like someone is grabbing me around my ribs. Also have tingling on my head and face. Waiting to hear from pain clinic, close to going private but honestly don't know what that would achieve! I have bladder and rectal prolapse too.

Trying to keep positive and grateful to chat with people that truly understand.