u/qazbot

Hello! I'll be as precise and to the point as possible in order to respect your time and kindness in reading this.

Onset:
8 years ago I had an exquisitely painful hemorrhoid removed. 24hrs after the procedure I developed a strong urge to void. That same urge hasn't left me since.

DX:
A half-hearted CPPS DX. No agent/cause has ever been found. According to PT my pelvic floor is not tight. My prostate has never been found to be enflamed or even painful via DRR assessment.

Symptoms:
・'Cross-your-legs'-level of constant urgency even with an empty bladder.
・Initially this urgency would randomly disappear during increasingly shorter intervals during years 1-3, but I no longer experience any periods of prolonged relief.
・Urgency is more intense in the colder months. (heating pads, hot baths, etc. have not alleviated this)
・Urgency is slightly less intense in warmer months.
・When enduring a cold with a fever, I *may* experience temporary relief.
・TMI territry: I randomly tend to have a leaky bum for an unknown reason. Despite wiping clean, sometimes after walking around for 15-30min, things get 'itchy'. If chaffing occurs my urgency seems to increase. (possible irritation at site of hemorrhoid removal?)

No urethral pain.

No pain when sitting.
No sexual dysfunction/pain.
No recognizable nerve/disc issues.

I do not suffer from significant stress/pressure. I lead an (otherwise) comfortable and happy life.

Urgency discomfort is 'bearable' if I'm seated but when I walk, the urgency can be felt with each step and or turn of my body.

Treatments:
Over 40 variety of prescribed meds. Everything from heavy-duty pain meds to Eastern meds. None have managed to produce any results.

Early on I was prescribed a litany of abx, they didn't change anything.

I worked with multiple PTs and I leave each of them scratching their heads.

I've had unremarkable but noticeable response to efforts to try and control how I interpret the discomfort. While I can usually pull the discomfort back from an extreme level if I focus extraordinarily hard on telling myself that the pain is just an incorrect signal, even performing these types of mental gymnastics leave me with an extremely high level of urgency discomfort that is unpleasant.

I'm compelled to believe that either a pelvic muscle or nerve was perturbed during the hemorrhoid removal which has left me with this constant discomfort. Are there any nerve specialists who might be able to resolve this issue? I've been told by different individuals that I can't possibly have PN, while others tell me it totally sounds like a case.

I'm not here to share a whole narrative bc it's been near a decade of going over and over it to the point I'm sick so here's Cliff Notes with the overarching question being:

*Even though I don't fit certain PN symptoms, would it still behoove me to look into consulting with a PN specialist outside Japan? (they don't really know much about PN over here)*

・2018 got a *horrific* hemmorhoid. While waiting in hospital to get it cut out I voided and experienced a horrific stabbing urethral pain for a few seconds then it vanished. Got procedure done. Went home fine.

・Next day had incredible urethral void urgency and...it's basically never stopped since. Off flare I'll get an hour or two where I feel 'okay'. On flare I get no relief or about 15min. That's basically been my life since then.

・Foods don't affect it.

・Been on ami, gaba, all sorts of stuff. Zero effect whatsoever.

・Been on meds that drastically shrink prostate etc. to zero effect.

・Done months of special diets. Zero effect.

・Done months of stretches from all sorts of gurus of varying degree from simple to hardcore. Even longterm, zero effect.

・And yeah, longterm antibiotics, blah, blah, nothing.

・Past two years I've discovered that it's routinely worse from late October to early April. Where I live that means: it's worse when it's cold. However, taking baths or dressing warm does nothing. Can't tell if it's cold or atmospheric pressure or some combo.

・Past year I've discovered it's worse after I strain on #2's but not like immediately. Post exit, there tend to be more cases where it's worse and also my 'exit point' can become painful when probed. (prostate massages were never painful, but the exit point can often be)

・Other than urgency I do not feel 'pain' outside the anal area on flare. But even on flare, sitting, walking running, etc. zero pain. Just constant urgency felt in the urethra. I feel it with each step.

・I've done mental exercises of all varieties to try and take my mind off it, distract, etc. none are successful. And I have really tried everything from relaaaaaxed approaches to intense distraction thoughts, etc. No effect.

Given the anal sensitivity/pain on probing, (but not sitting/walking/etc) the rxn to cold/atmospheric pressure, and the onset being after instense pain derived from a hemmorhoid, do you think I would benefit from a PN approach? If so I have many more questions but I'm sick of blaming this on my prostate when the poor thing has never been anything than the picture of health and my pelvic floor is the absolute picture of health after the gamut of approaches I've tried.

I'm back to happily living life better and healthier than ever but it doesn't change that this is still really tough to live with. Your time and consideration is appreciated.