pudental neuralgia

I have it in rectal anal area radiating to vagina. Everyone just talks about vaginal---what about constant pain and burning in rectal area? It flares up at 3am every morning like a blow torch. I can only sit on donut pillow and constant ice packs day and night. No one here in US seems to know about it. Feel like foreign object in rectal area. Had spinal cord surgery three years ago, and this problem started gradually after. I have been to every kind of Doctor and they act like I am nuts!!! I have become homebound. Cannot walk or stand without distress. Had in

injections and epidural, hysterectomy, hemmorhoids, rectal surgery for fissure. All of this was suppose to cure problem---nothing helped. On top of everything I have neurogenic bowel, so have to disimpact, which sets nerve off even worse. I feel suicidal at times! I can find no hope or help anywhere. I have read the forum about vaginal pudental neuralgia, everyone seems to be out of US. Cannot find PT who might be able to help---they just seem to deal with vaginal! Can't find anyone in my area. I live in Pa. Collingdale, US. I have done research on PN site.

Again everyone seems outside of US. Can anyone help me please. I have no life for three years now.

Thank you!!!!

trishj46

6 Replies

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  • Hi sorry to hear about your problems, you say you have done research on the PN site but not sure what you mean by that. Have you looked on the pudendalhope website as there is a full list of doctors who specialise in PN. I live in the UK and the only doctors I can find to help me live in the USA so you are not alone with your frustrations.

    Hope this helps you, Marion

  • My pain is centred in the same area as yourself and came on from an injury from hydrotherapy treatment.

    I too use cold packs frequently, which I lie down on,one under each buttock. The burning pain spreads/refers to my hips,so I put anti inflammatory gels or cream over the skin of my buttocks and hips.

    'Blow torch' is good description. Surprisingly,though I also find the gel packs work 4 me when heated-up and applied when lying on my side or front. The effected area is relaxed by the heat.This could help you for a while when in bed at night?

    Suicide has also entered my head as an option. Partly because sexual activity,including simply excitement itself, severely worsens the problem.

    I find that general activity actually reduces the pain,the more vigorous the better. Though not cycling,which I had to give up. Its agony on that saddle.

    I haven't been diagnosed with PN, though I do have the more general diagnosis of "neuropathic pain".

  • Yes, you do sound like you have PN too! I have so much neuropathic pain! Have been in hospital and they know nothing about treating it! Its a known fact that riding on bike will really aggravate it!!! They tell me the nerve is entrapped and has to be released. There are no Doctors here who deal with it! I may try some heat---just thought it would make it worse. I feel for you, and know what your going through. I also now have it in my feet! Neuropathy pain left untreated will just travel and get worse. I will send you blessings and hope that someone or something will help you!!! trishj46

  • I'm going to the cleveland clinic next week, will let you know how it goes. I went on Line and found they have a team that treats this! I was shocked to see this and they gave me an appointment immediately. I pray they can treat this as the pain meds no longer help. Will keep you updated on this.

  • Well the appointment was a total disappointment!

    Am now, once again, referred to a neurologists.

    I have had relief from sitting on a donut as well as taking the meds and the pain pills.was given a shot in the spine for the swelling in the rectal area

    But nothing For the muscle spasms In back,toes,calve fingers,scared about the blatter and bowel, my colostomy worries me.

    I hope I can get into see this Dr sooner than the Aug., Sept. Dates they gave me.

  • Sorry to hear no help! Mine also is getting worse! Not surprised they sent you to neurologist---they could not help me either! Right now I am trying tramadol 100mg, it does help the burning, but afraid in time that will no longer work either. Heat makes mine worse! I continue on donut pillow and ice pack! My nights can be horrific with very little sleep. I hear the same thing---its neuropathic nerve pain from either spinal cord or PN. I had all the injections to deaden nerve, nothing worked. I do not tolerate many drugs used for this problem. For me it is very erratic from day to day and night to night! With everything I am pretty much homebound! I feel I should just give up fighting it and try to live one day at a time. Easier said then done! Hope you have better luck!!!

    Hugs!

    trishj46

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