Pudendal never pain

I have just read the comments on the site . As I have the same problem 14 years . And told that I am mad in the head as doctors use that excuse to anything that they don't understand . It's started September 2002 and it was impossible to sit down . Only haven was the toilet seat 6 years searching for a answer . I was then diagnosis with PNE . By a very aggressive man named barorniski I had 3 nerve blocks done by him

One worked 25 Aug 2005 or 6 .

Oh it was so good I could walk and run . Next morning bad the same .

Anyway I was booked in for surgery and had both sides done I have two large cuts in each buttock result no good when back to surgeon and all I got was we must of got the diagnosis wrong . A year later I found a man in axeplovence France I fly to see him and he was the first person to examine me !

You have neuralgia of the pelvic floor and a coase of physiotherapy would help .

That sounds good up you have to find the correct person !! Research a month to end up in Dublin I think the l as ladies name was May Welliam she worked on me for a hour through my back passage .and thee was soon relief .

To go to Dublin each week was out of the question but sh had as friend in London called Maria Elliot ( has web site) I was her first man patient .

The story goes on I am now 72 and still in pain burning under Neath and a tennis ball up the rear pain in the tip of the penus .

Still trying to get no looking for help .

Hope this have helped someone with the same problem . And any help I can get as well as anyone have any updates on help please contact me

Pamdella

13 Replies

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  • Dear Pamdella,

    I am 54 and have been suffering exactly as you describe sine 2012 when I fell down the stairs. I am in US and haven't had resources to pursue extreme treatments. My magic bullet was the drug Cymbalta. At higher doses it took my pain and deep gnawing vaginal and rectal pressure from a 12 to a 4. I don't know if you have tried this but I thought I would tell you.

    Good luck to both of us. May this torment end

    Dee

  • Yes I am on in its OK make me put weight on . You at web pelvic headache

  • Dee,

    One of my doctors wants me to try Cymbalta for my pudendal neuralgia (and burning butt muscles). The other doctor is horrified at Cymbalta because apparently it is a nightmare to come off of (I also read a bunch of reviews saying this). However, if the Cymbalta were to significantly help me, then I think it would be worth the struggle of getting off of it (if I ever decided to). Did Cymbalta help you with any burning pain or just pressure type pain?

  • I don't get the Drs fear of withdrawal if it works just keep taking it. The pn does not go away. I am dependent on Tramadol but since I have to always take it withdrawal isnt a problem.

  • noticed that the pain was less but it's not the cure and it's made me put weight on like 85 lbs .

  • Hi all ,

    My journey started a year ago (I'm 60 and live in Ohio) with what I thought was acute infectious prostatitis , which had afflicted me every five years or so since my twenties. A week of 'kicked in the goodies' pain which eventually went away. But a year ago pain in the same place which did not go away. And the pain spread to what I can only guess is the epididymis on both sides, the right side usually the worse. And increasing difficulty with urination (weak stream, hard to start , a couple minutes to fully empty bladder). And penile numbness. And Six months ago also peripheral neuropathy beginning in feet and legs. So I'm beginning to suspect pudendal issues , though it's been difficult to get any doctors to sign on to the possibility. Am being shuffled off to pain doctors who want either an L1/L2 nerve block or an 'SCS' spinal implant. I cannot get them to try to diagnose the root cause of the pain, which if treated would lessen then pain to a tolerable degree possibly. I've heard too many accounts of botched nerve blocks making things worse. Nevertheless a pudendal nerve block seems to be the only option left to me. My testerone was 280 when I finally demanded that we check it. Now taking 200mg twice a month. And oddly enough, my PSA recently dropped from 6.4 to 3.5. on trying to get my primary care doctor to understand my undiagnosed pain issues he asked me if I was afraid of dying... no, I replied, its living (like this) that is terrifying me. My glucose is high but they tell me I'm not diabetic . Started metformin for that (at my suggestion). It's hell being your own doctor when the others seem to have given up. Anyone else out there similar issues or suggestions? Thanks in advance .

  • I have exactly the same pain and problem,I could have wrote that post except for the surgery, I am also 72 and had this problem for 14 years,nobody as given me a proper diagnosis after seeing many so called specialists in the uk and Spain.I can feel your pain.

    Best regards Terry.

  • Terry that's odd as I am 72 it started September 2002 . Been everywhere and learn a lot ..

    A new therapist toke a new approach to the problem .every body has told me to pull up to tighten the muscles in the pelvic floor . She's told me the get on hands and knees and release my back passage and push down and deep breath in and stretch out and return breathing Out .it's the best it release . Regards Derek

  • Thanks Derek,can you explain in more detail and I will try this out with my exercise routine .thanks Terry.

  • Terry ever since I have had this pain I found to sit on the toilet seat with no trousers and pants on gave me pain relief.As for the first 6 years I couldn't sit down . And I know that this sounds crude but if I passed wind the pain went off for a few seconds. So when you pass wind you tend to push down to release .

    So there you are on all fours . First breath in though the nose counting to 5 No go backwards breathing Out though the mouth counting 10 .At the same time bear down like your trying to pass wind .over the 10 seconds breathing Out

    Then start again by relaxing the back passage . Do it 5 times .it's helped me as ever other physiotherapist treatment has told me to do the opposite by pulling up and lighting the pelvic floor muscles .

    My pain started by stress .ie a dog if unhappy it tuck's it tail in . In my case that was the start of the pain as I damaged the muscles that pull in the pudendal never .

    I hope you try this and get some relief regards Derek

  • Thanks for that Derek.what I find that helps me when the pain is bad is to massage just inside the back passage on the side the pain is.I found this out after many visits to a urologist,after having the finger up the back passage,when I got home the pain had always gone.

    Terry.

  • I have similar and treat it with Gabbapenten and Tramadol plus 4 times a year I get ganglion impar blocks. Some of the blocks give me 3 months relief but I think the meds are what keep me comfortable to enjoy my life.

  • Hi Pamdella could you tell me where you had your surgery for PNE.

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