u/throwws31

I’m a 27-year-old male with almost five years of progressively worsening urinary, sexual and sensory symptoms. I don’t have the classic burning pelvic pain usually associated with pudendal neuralgia, but I’m wondering whether pudendal nerve irritation or compression could cause predominantly numbness and loss of function instead.

It began with a sudden constant urge to urinate, difficulty emptying, a weak/split stream and repeatedly straining to pass more urine. Sometimes I could continue passing small amounts for hours. Semen would also remain in the urethra and need to be milked out.

I was treated for suspected prostatitis with doxycycline. Four days into treatment, while sitting, I suddenly felt something “change” around my urethra and the underside of my penis. From that exact moment, I completely lost the internal sensation of urinating and ejaculating. I can still physically urinate, ejaculate, orgasm and maintain erections, but I cannot feel the urine or semen passing.

The sensory loss has gradually progressed:

• The underside of my penis is completely numb, including to ice and sharp touch.
• Sensation in the glans is severely reduced.
• I can contract the muscles that normally “bounce” the penis, but no longer feel the contraction.
• Testicular sensation has become markedly reduced.
• Anal sensation when passing stool is also reduced.
• I still experience incomplete emptying, post-void spurts and occasional weaker flow.

Around two years ago, a contrast urethrogram appeared to show a distal urethral narrowing. Initially the dye would not flow properly, but when I relaxed and used deep abdominal breathing, it began flowing and the narrowing appeared to open. I was nevertheless diagnosed with a stricture.

I had a flexible cystoscopy yesterday. The scope passed easily, and the urologist said my urethra and bladder were completely normal and that I do not have a stricture.

Pelvic, lumbar, thoracic and cervical MRI investigations have also not found a cause.

Because the apparent narrowing changed with relaxation, I wonder whether years of urgency, straining and constant guarding caused a severely hypertonic pelvic floor, which may now be irritating or compressing the pudendal nerve or one of its branches. My perineum also becomes extremely hard/tight during erections, although it isn’t painful.

Has anyone here experienced pudendal neuropathy primarily as genital numbness and loss of urinary or ejaculatory sensation, without the characteristic severe pain? Does the distribution underside of the penis, glans, scrotal/testicular area and anus msound potentially consistent with pudendal involvement?
I understand nobody here can diagnose me.

After almost five years of progression and several urologists saying they cannot help, and impying this is a mental issue, I need some assistance.

I’m mainly trying to identify the correct specialist and testing pathway.

I’m a 27-year-old male and have had progressively worsening urinary, sexual and sensory symptoms for almost five years.

After a normal cystoscopy today ruled out the urethral stricture I was previously diagnosed with, I’m wondering whether pelvic floor dysfunction could explain this and what type of specialist I should see next.

It began with a sudden constant urge to urinate, difficulty emptying, a weak/split stream and repeatedly straining to pass more urine. At times I could continue passing small amounts for hours. Semen would also remain in the urethra and need to be milked out.

I was treated for suspected prostatitis with doxycycline. Four days into treatment, while sitting, I suddenly felt something “change” around my urethra/underside of my penis. From that exact moment, I completely lost the internal sensation of urinating and ejaculating. I can still physically urinate, ejaculate, orgasm and maintain erections, but I cannot feel either process happening.

The sensory loss has gradually progressed:

• The underside of my penis is completely numb, including to ice and sharp touch.
• Sensation in the glans is severely reduced.
• I can contract the muscles that normally “bounce” the penis, but no longer feel the contraction.
• Testicular and anal sensation have also become reduced.
• I still experience incomplete emptying, post-void spurts and occasional weaker flow.

Around two years ago, a contrast urethrogram showed a distal narrowing near the tip. Initially the dye would not flow properly, but when I consciously relaxed and used deep abdominal breathing, it began flowing and the narrowing appeared to open. I was diagnosed with a stricture and offered dilation, which I declined because it would not explain or treat the numbness.

Today I finally had a flexible cystoscopy. The scope passed easily, and the urologist said my urethra and bladder were completely normal and that I do not have a stricture. Pelvic, lumbar, thoracic and cervical MRI investigations have also not identified a cause.

The fact that the apparent narrowing changed when I relaxed, combined with years of urgency, straining and likely constant guarding, makes me wonder about a hypertonic or poorly coordinated pelvic floor potentially irritating nerves. My perineum also becomes extremely hard/tight during erections, although it is not painful. A pelvic-floor physiotherapist previously wanted the suspected stricture resolved before continuing treatment.

Has anyone with male pelvic floor dysfunction experienced profound genital numbness or loss of urinary/ejaculatory sensation, not just pain and tightness? Could pelvic floor overactivity or dyssynergia plausibly cause symptoms this extensive?

I was diagnosed with a urethral stricture through a urethrogram with contrast around 2 years ago now. The urethrogram showed a distal narrowing near the tip, and dye would not flow through for a proper reading. I then relaxed as much as I could (as it was quite invasive ofcourse) and the dye flowed, the doctor said what I'm doing is working, and they took the readings.

I was told to have a urethral stricture, and subsequently my urologist wanted to dilate me within that week. I refused dilation after hearing all the horror stories and did not see how dilation would actually address my main symptoms.

It's been a couple years now of going to different urologists and many doctors to try and resolve my issue, my latest one wished to perform a cystoscopy to check my bladder, and said he may not be able to get to the bladder due to the stricture, and if that's the case, it's diagnostic in itself and he will withdraw.

I had it done today. I was dreading the cystoscopy, but honestly the anticipation is much worse than the procedure, for anyone wondering. Either way, he said I do NOT have a stricture. So I'm just not even sure what the next step is anymore.

He can't help me whatsoever, he says that my urethra (which previously had a stricture diagnosis from a urethrogram) is completely fine, and so is my bladder, so I will need to find a specialist in a different field for my symptoms.

Hi there. I have a confirmed distal narrowing near the tip of my penis. I had a urethrogram around 2 years ago which confirmed this.

I have developed other issues since and now am with a new urologist, who wants to perform a cystoscopy. I'm having it done tomorrow and I'm very intimidated. I can't imagine how it won't be one of the worst experiences of my life.

But my main concern is, will there not be a good chance this worsens the stricture? The doctor wants to go to my bladder and put saline in there, but my stricture is near the tip, so... will it not have be stretched during this?

I just don't want to end up with worse issues and longer lasting damage due to a simple, yet terrifying routine procedure