(Male) Hard/Flaccid? Pudendal Neuralgia? Or something else?

[james35699]

Hi all,

I need some help from other guys who've experienced what I'm going through or someone who knows what they're talking about.

In January this year I began to feel pain in my penis from the base to the tip. It started off fairly mild but within the space of a few weeks, became unbearable. The pain also spread to my testicles. I began experiencing erectile dysfunction, premature ejaculation, pain upon ejaculation and my penis when flaccid appeared very small, shrunken and almost of a rubbery texture. It was cold and hard to the touch.

After another six weeks my pain worsened even more and I began to feel pain in my lower abdomen/upper right pelvic region. Almost like a prickling sensation that was very sensitive to touch.

This lasted for a few months until this summer when things slowly eased up and I got about 90% better. I began to see a pelvic floor physiotherapist who gave me some simple stretches to do on a daily basis. I was able to return to work, my penis returned to it's normal state and I was almost pain free (some days better than others)

Then within the last 7 days alone, despite doing my daily stretches and doing everything I had been doing to keep fit, healthy and active, my pain has returned very severely.

I'm currently experiencing extreme pain in my penis (specifically the head/tip). My penis appears a lot smaller and narrower (like it has cramped up) again. I cannot get a full erection (only about 70% hard) and ejaculate within seconds. I have pain in my tailbone and lower abdomen which is shooting down my left leg into my right foot. I cannot sit still. Standing up and lying down aren't too bad but sitting is incredibly painful.

I have had urinary and blood tests and they all came back clear. I have had numerous ultrasound scans and MRI scans and nothing has shown up. I've also had a prostate exam and was told everything seemed normal.

Does anyone know what this could possibly be? I understand chronic pelvic pain can be an umbrella term. Is this hard/flaccid? Pudendal neuralgia? I'm at my wits end now and severely depressed because of this. I'm in desperate need of help and my GP isn't doing much to help as they do not understand much about men's pelvic pain.

[Superzob]

I have chronic prostatitis with similar symptoms, though I'm beginning to suspect that it may have migrated to the pelvic floor/pudendal nerves. Prostatitis due to inflammation or infection rarely shows up in urine samples, unless you have accompanying cystitis. The only way that might be suspected is if your PSA level (from blood tests) is raised, but there's no sign of malignancy in the DRE/biopsy tests. If you've had PSA and prostate cancer tests, and urodynamics doesn't suggest BPH, then it does look like a pelvic floor/muscle/nerve problem, but there my knowledge ends, I'm afraid.

[Chasegood]

James, I have similar pain, and it is from pudendal neuralgia. It got really bad several years ago, and after seeing posts about people using Amitriptyline to address nerve/pudendal pain, I started taking it. It has helped a lot. I had tried everything else - the PT didn't do anything to help, and a neurologist told me that in my case, only medication would work. It is only by God's grace that I found Amitriptyline. I don't know if it's one size fits all, but you might want to seriously give it a try. If you do, make sure you don't give up on it if you don't see quick results. It could take at least a few weeks to start working. Amitriptyline originally was developed for depression, but they found that it works even better on nerve pain.

[Humming]

Hi James. Try to get referred to the University College London Pain Clinic - they have consultant s that should be able to diagnose your condition. You may have to go through your local pain management team first but they probably won't have the experience so you will need to get the referral to UCL. I'm male and suffer from Pudendal Neuralgia and was diagnosed by a UCL consultant. It is an awful condition that can effect people differently. there are different treatments that may help but the effectiveness of these also varies from person to person. I hope this helps.

[Desperateforrelief]

Hello, I am a female with diagnosed pudendal neuralgia. Sorry I read your posts, but I am curious as to what others have to say. Anyway, I've had many different surgeries addressing this, the interstim helped at first and then stopped. This summer I had radiofrequency ablation of the left PN interstim on the right. He usually does both. 100% pain relief for 2 months, followed by a slight increase 3-4 intermittent pain. He re did the radiofrequency ablation and very good so far. Just a FYI.

Also, FYI - the PN nerve controls the bladder, the bowel and sexual organs.