Health Organization for Pudendal Education

Hello everybody,

Sorry for all the unpleasant details but it's very hard to think straight at this time. Who am I? I am a 25-year-old man from Italy who's been suffering from a mystery condition since
April 2017. It all started during intercourse with my (now ex) partner, we were admittedly being too rough when I felt a terrible shock - like a pin prick - on my
penis; I immediately lost my erection, tried to get it up again but as soon as it reached a certain point I would feel that pin prick and lose it.

Then I gradually lost most sensation in it, as well as the need to pee. Then I developed a golf-ball kind of feeling in my anus along with a sensation of
always having to do some solid business even though there was nothing to do... dunno if you get the drift. The ball feeling and urgency went away on their own a couple weeks later.

So I went to a urologist near me, only to get laughed at and be reassured that it was pretty normal and that I would've been okay in less than two weeks. If only! A month passed and nothing came out of it so I
went to the top doc in my country, spent a small fortune only to receive the same diagnosis; months passed, after masturbation I started having painful erections coupled with burning in and on the tip of
my glans and when peeing. Wearing underwear had become intolerable for me. Went back again, was eventually diagnosed with prostatitis, got a round of Cipro (avoid all fluoroquinoles if you can!) which
knocked me out of action for six months and when it didn't work - after a series of checkups no 24-year-old should ever undergo - I got labelled as one of those people suffering from
"non-bacterial prostatitis with a bladder neck obstruction" (whatever that means) and promptly sent on my way.

The burning went away and I even recovered some sensation thanks to quercetin but then, in September, I noticed I was leaking small drops of urine every now and then throughout the day regardless of
my position or activity. Then one day I woke up and my rectum just felt numb! ** At this very point I can feel neither the need to pee nor the need to poo even though I can and still do both things;
sometimes am leaking small drops of urine like a broken faucet - I'm otherwise continent and there are days I'm completely dry - plus my orgasms are non-existent BUT many symptoms
vanished a couple of times just by... walking. You read that right. I then started applying heat to my back, glutes, whatever and lo and behold - I did get some relief! Briefly but still.

My urinary stream temporarily got better as well and instead of having to strain to force urine out I could just let it freely flow for once.

Not to mention my two encounters with ED and total genital numbness but thankfully those went away on their own. When I got the sensation back in the penis I could clearly feel an urgency
and frequency to urinate. My sphincters seem to be working otherwise and today, while clenching my anus, I felt a painful shock in the right thigh (near the pubic area). I also noticed that
my penis seems to have some<how "rotated" on its axis and that my suspensory ligament looks like it's damaged.

** BTW I did enlist the help of a PT about a month ago, I felt better after two sessions but during the third one he manipulated my back... wrongly. I immediately felt a transitory
sensation of coldness in my legs and a few days later my anus went numb and now I have developed that lack of needing to poo plus my tailbone doesn't feel
right. When I sit or lie on it there's some kind of very dull pain in there. This is all very bizarre and most frightening, it is driving me up the wall. What am I to do?

Find another PT and keep going with the physical therapy?

Can anyone relate?

All the tests I've done

1) Bloodwork: all clear.

2) Urinalyses with culture and antibiogram: all clear.

3) Andrological/urological exam with palpation of the penis and prostate: all clear.

4) Uroflowmetry + cystoscopy: all clear but mild bladder neck obstruction observed.

5) Ultrasounds of the bladder and kidneys; all clear.

6) Penile ultrasounds, flaccid and erect: all clear.

7) X-rays and an MRI of the spine in its entirety: all clear.

Hi Johnny,

Wow, it all sounds pretty complicated and very disturbing, especially for someone your age who should be enjoying life. I'm sorry you are experiencing such difficult symptoms.

My first thought was maybe cauda equina syndrome because of the loss of sensation to pee or poop. Did you have an MRI since you lost that sensation? If that has already been ruled out with a recent MRI, and spinal radiculopathy is ruled out, then I guess you have to suspect the peripheral nerves that innervate the areas you are having problems with -- the pudendal nerve distribution area. Are you able to go to a pudendal neuralgia expert to get that ruled in or out? Also, if your current PT doesn't specialize in pudendal neuralgia maybe it would be important to see someone who does. They could evaluate your pelvic floor and if you have really tight muscles that might explain the rotation of the penis.

I can relate in that I experienced some similar symptoms (only female of course) when I was going through really bad PNE but it's been quite a few years since I had the shocks. Obviously your doctors are letting you down by just sending you on your way and not really helping you with a solution. I hope you can find a physician who knows what they are doing. I think there are some good ones in Europe.

Violet

Hi Violet,

I had that very recent MRI done exactly because I suspected cauda equina, but nothing of concern was found. Same thing with the X-rays. Yes, thankfully I
have already booked an appointment with one such experts (Francesco Saverio Mari at the Quisisana clinic in Rome), I too think it has to be some
muscle/ligament-related PN compression otherwise heat wouldn't do much for me? Plus all most of my back from the waist to the buttocks
to the thighs and legs feels just... rather tight, in a way. When I squeeze the anus and I can feel the muscles down the legs too.

My perineum (taint) too is very tight and when I press on it I feel pain on part of the glute; judging from what I could gather the
rotation seems due to a partially broken suspensory ligament. Thank you again for your concern. What were your symptoms, if I may ask?

Hi Johnny,

My symptoms were knife-like pain at the ischial spine on one side that was worse when sitting, urinary symptoms -- mostly feeling like I had to pee often, burning/allodynia, tense pelvic muscles, shocks that kept me awake at night, hypersensitivity, and severe perineal pain.

I used heat before and after surgery. It helped a little bit, I think mainly because it relaxed the muscles a little bit. Hopefully the specialist you are going to see will be able to help you.

Violet

Brother i'm also having the same thing, mine started after a vigorous workout, i'm 25 btw. I've been scouring the internet ever since.

Hi Adam, just sent you a PM.