6 months in and feeling hopeless with symptoms

[5starman]

Hi all

My story started in April 2017 with (out of nowhere)a severe sharp electric like pain down my male urethra. My ability to get a rigid erection was immediately gone and for 2 weeks the sharp pains came and went and my genitals became larger and harder when flaccid. Then I noticed 2 lumps over my pelvis, above my left leg, which went away with antibiotics, and shortly after I started getting very frequent urination and strong urges way too often. It has forced my to be on sick leave for the past 6 months. I have had many urological tests such as cystoscopy and urodynamics -all normal. All bloods normal and urine normal. I have been referred to a neurologist based on sensory urge only (no bladder muscle spasms) and an EMG/nerve studies have been ordered which I await.

I havent had much searing pain since the first 2 weeks - this make me think the nerve is not entrapped but irritated from the infection. No pain to sit thankfully but I have had one episode of Proctalgia Fugax - a spasm of the rectal levator ani muscle which I understand is innervated by the pudendal nerve. My pelvic muscles feel loose rather than tight (I couldnt tighten at all with the infectious lumps there) and my genitals are bigger when flaccid and 'stiffer' with a redder and raised urethra tip/meatus. In short im suffering from urinary dysfunction, erectile dysfunction and mild pelvic discomfort. The pelvic discomfort and urinary dysfunction increases greatly when
wearing tighter clothes but I have no pain sitting.

I have a few questions

1. Do you think this could be PN related - possibly just the dorsal nerve branch of the pudendal nerve as I dont have rectal or perinneal pain?

2. My neurologist in N.Ireland has said if he cant find any abnormalities in the upcoming EMG/nerve studies that he will likely refer my to a "UroNeurologist" in London of which he said there are only a few in the UK. They seem to be all based at NHNN in London under and including Dr Panicker - does anyone have any opinions on him or thr UroNeurology dept at NHNN?

Thanks alot

[Violet M]

Hi,

It's possible the pudendal nerve is involved but I can't say for sure. The pudendal innervates the urethral sphincter and it sounds like you have some urethral issues going on. Hopefully your upcoming diagnostic tests will give you more valuable info.

I haven't heard of Dr. Panicker. There is a UK Facebook group who might be able to give you more info about him.

Take care. I wish you all the best in figuring out a proper diagnosis and treatment.

Violet