Pudendal neuralgia

I’ve had pain in my penis for about 2 years now I’m 22 years old and I’ve been to my doctor urologist pain doctors almost everywhere I’ve had many tests done a cystoscopy done and I was told I have prostatitis but the more I look into it I think it’s pudendal neuralgia but I’m not sure my penis gets red and spotty burns is very sensitive my urination is not normal it’s harder to pee and burns during same with ejaculation pretty much ruins my life

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  • I've got burning urination - really worries me, not least because it sets off the other symptoms, burning sensation on scrotum, and anus

    Are you on any meds? I'm working up gabapentin and amitripyline at the moment - god knows if they'll do any good though

    I'd be really grateful if anyone has any suggestions as to how I could reduce the nasty burning urine sensation

    Are you in the US then Jess?

    I'm trying to get to Bristol to have a diagnostic nerve block(waiting for a phone call) - under CT scan so I've been told. Then maybe a therapeutic one which will block out the burning for as long as possible.

    I see a 2 stage process - get down to Bristol first and then Nantes where there is a lot of expertise

  • Yes PA and I’m taking gabapentin also no relief yet it’s burning redness effects me sexually everything I’ve been everywhere

  • Been taking the gabby long? I've seen a Pain Consultant and he said take amitripyline with the gab - because you get synergistic effects; all that 2+2=5 stuff

    I'm testing this out myself now.

    I saw another Consultant who diagnosed me with "Scrotodynia" - this was before I developed other symptoms. And this consultant reckoned he'd resolved a case of Balanitis by prescribing an SSRI - I don't know if that's relevant, but I thought I'd throw it in there

  • No only a week so far I have to go see see another pain dr at first they thought I had prostatits I was never even diagnosed with the pudendal but my symptoms seem to be it

  • Well if it is any comfort here is a line from the Pain Consultant's "Suggested Management Plan"

    1 "Await outcome of gabapentin and expect full effect after 3-4 weeks"

    2 Consider escalation in amitriptyline intitally to 25mg with escalation to 50mg pending response

    These words of wisdom cost me £220 - but for you Jess, they're free

    Then he goes on to say increase the gabapentin after "achieving a stable dose" of amitrip

    So apparently it all takes weeks

  • Well hopefully I see some relief I appreciate the advice I shouldn’t have these problems at 22 years old

  • No you shouldn't, life can be very cruel sometimes, I was looking forward to a pleasant retirement - suddenly it doesn't look all that pleasant anymore

    I have finally got a structured plan for the meds which I am hoping will at least alleviate the symptoms.

    But beyond that I'm looking to get nerve block which I hope will give me real relief, as in I'm not conscious of the symptoms all the time

  • Gabapentin and all the drugs they gave me , Plus CBD oil, and crèmes did nothing for my pudendal nerve pain in my penis and pelvis. Pain clinics gave up on me. I had this for a year,

    and I am now having an operation for pudendel nerve decompression

  • May I ask where you are having the operation performed?

    Did you have any nerve blocks?

  • John Hopkins Hospital in Baltimore. Nerve blocks did nothing also!

  • That's not very encouraging about the nerve block, I'm thinking of having nerve block treatment in Bristol

    The best option for me looks like Nantes, lot of expertise there

    Good luck with the op, hope it works wonders for you

  • Have you found the gabapentin or amitriptyline impacts your orgasms? Ejaculaton?

  • And I’m not even sure if it’s pudendal neuralgia

  • I self diagnosed with the help of google search on symptoms and the Nantes Criteria, pretty conclusive to me, The only thing I don't know is whether it's PN or PNE

  • In the summary of the study about this, they say Dr. Jarnagin cannot treat men due to medical guidelines.

  • I was diagnosed with a Pelvic Floor Dysfunction and PN. It couple things in my opinion could be going on with your penis pain [not a doctor] (a) you have trigger points that are referring pain to the tip of the penis (b) you actually could have an acidic bladder. The urethra goes through the prostate and is often diagnosed as prostatitis when it is inflammed. I had a combination of both. I reduced my acidic food consumption and it made a big difference (on top of physical therapy and trigger point release). Coffee, teas, alcohol, citrus, tomatoes. It is worth a shot to try and doesn't cost any money. Most importantly though is to allow yourself to have those food once in awhile (I will have a drink or two on the weekends), if it is stressing you out by reducing those foods than DONT DO IT. I suggest complimenting it with aloe vera supplements.

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