New on here, desperate for opinions on possible PN

[JohnS27]

I am 27 and in fairly good shape 140ish lbs I used to be very active and spent 16 years skateboarding almost every day until this and have been dealing with this for 7 months now, seen quite a few doctors and still haven't got a clear diagnosis as all my tests are coming back normal, I have had my blood checked, three scrotal/testicular ultrasounds a Ct scan and am currently waiting on an MRI my primary care doctor has ordered. Here is how it all started and a list of the crazy symptoms I've felt/feel in the best way I can explain it.

Let me start by saying I used to masturbate once or twice a day, no lube for many years, some days 2 hours at a time, well around November/December last year, I started feeling the warning signs sometimes while I was masturbating I would feel like a popping feeling, kinda like a joint popping sort of feeling didn't really hurt and didn't think too much of it thought it was just something weird that would probably stop. Well on January 12 was the day it happened I felt that feeling again but worse than before and it felt like something shifted like a vein or something from the underside of the left side of my penis that is also connected to my pubic bone hip and abdomen area too cause I felt it across that whole area, did not lose erection though and actually was able to finish, no bruising no swelling, not even that painful at first, I started to notice when walking though it felt like a chord like structure was trying to pop out of my lower abdomen then two nights in the severe burning started and then some numbness shortly after and pain to the point that I could barely walk then I started going to doctors all just saying it was probably some sort of strain and give it some time. Here is a list I've wrote down of all the crazy things I feel and have felt throughout this 7 months. Also want to add that all of these feelings are in the penis/testicles, groin, abdomen, and hip and side, and slight back pain occasionally but I've had that before this, no problems with anal area besides occasional itching which I've already had too but no pain back there or on the perinium much, I think the only thing I do feel on the perinium, which is hardly ever, is actually just the deep pain at the back of the penis. The penile numbness and tingling and pain is pretty constant 24/7 though, also a lot of times when I say pelvis in this list I mean like the groin area. And I have sitting pain but no more than when standing depending on the surface I sit on, long car rides make it worse though, when I do sit down though any of the pain is again in the penis and groin hip and abdomen, buttocks does not hurt.

Cord like feeling, feels like tight vein running from penis to abdomen
Numbness and tingling
In penis, and recently groin/pelvis
felt something move in groin/pelvis
Movement or spasms
Not seeming to get fully erect
Very irritated and numb and symptoms start to come back worse after nocturnal ejaculation
Feeling across pelvis and hurts when it moves
Feeling of vein or tight wire trying to come out of penis
Pulling, tugging, tightness
Tear feeling on bottom side
Sitting certain ways it'll just tighten up and feel weird shooting sensations when walking or certain positions
Feeling of pelvis trying to fall, sudden aches and pains when standing and walking or sitting

Literally felt something move in pelvis

Riding in car it is worst feels like when body moves it stays out and spasms and spasms into me

Feels like penis being pulled to left by muscle or something

Twisted feeling especially when I turn head either way

Feeling tug and activity behind testicles constantly

pressure under penis left testicle a bit swollen

Felt like muscle thread was loose catching my pelvis bone

Feels like muscle threads are tight and tangled and dangling out of place in body

Kind of a constant throb and feels like a sawing and moving back and forward

Feel the same feeling in my big toe on right foot mostly the numbness

Heavy feeling in testicle, like something has fallen into the testicle

Painful pinch while walking in testicle

Testicle pain lately and almost constant activity going on in it lately

Popping kinda feeling like a joint popping or catching locking feeling in pubic area/hip

Strings flossing through body and around pelvis bone and groin

One day felt like it got twisted around bottom of left bone or something at the top where leg meets body and was tight upon standing, literally felt it tighten up, was sore in penis/pelvis/low abdomen the next day at work walking on concrete again like before

Feeling of something shifting twisting around while walking deep at back of penis

Feeling like tissue is twisted and stretched around pubic bone

Very burning type feeling and odd cold sensation at times

Sometimes feels like sheaths are flossing and rubbing against penis internally

Feeling of being webbed/tangled with strings up from hip to penis then up to abdomen too

Feels like something just constantly pulling me from the inside

And I was better ish for a while, at least where I could walk and stuff better from may to like July then was just walking around at work one day last month (July)and suddenly
Felt like muscle like structure or tissue of some sort just ripped away in abdomen then these symptoms happened...

Tight fishing line tightenening up and spasming and hurting badly

Almost seems like shoulder is even linked to it and turning head or moving left shoulder makes me feel twisted

Starting to feel things a little in other side

felt like penis twisted completely around

I feel like I'm hanging on by threads something is about to prolapse or something is ripping me to shreds feel muscle tissue stretching thin and tangling and dangling all the way up into abdomen

Felt like all the weight just fell into scrotum and bottom of pelvis

Yellow discharge in semen but only seen that once so far and I've read it can be from not ejaculating much, which I don't besides nocturnal anymore as I have been refraining and trying to heal.

Can literally feel muscle stretching/tearing painful

Feeling like penis is splitting in two or tearing away from body, very painful! feels like pelvic/ lower abdominal muscle splitting

Knife like feeling in penis a couple of times

Penis stays retracted most the time

Sat down and felt like I tore it more hurt bad sent me to floor, muscle goes from groin to abdomen

Feels like hip is involved

Feels like string or strand or bands connected to penis and when I stand up it pulls tight and hurts abdomen and hips feel tangled up

Anyone else had any similar symptoms to this? Does it sound like PN or something else? Please feel free to comment.

[Violet M]

Hi John,

It can be hard to determine sometimes whether the pain is from small fiber neuropathy due to localized injury from penile overstimulation or given your history of skateboarding whether there could be some pelvic muscle involvement, sacroiliac joint involvement, hips problems, or spinal problems. If it's small fiber neuropathy then the traditional treatments we talk about here may not be the answer, other than to try things that promote healing of the small nerve fibers --such as hydrotherapy with hot/cold alternating sitz baths.

If there is more widespread involvement with the pelvic floor, main trunk of the pudendal nerve, or pelvic structures, then it might be a good idea to get an evaluation by a manual therapist or pelvic floor PT who is knowledgeable about pudendal neuralgia. I found my PT to be more knowledgeable about pelvic mechanics and the pelvic floor than many of the docs I went to.

Violet

[JohnS27]

Thank you so much for the input Violet! It was very helpful information, my doctor has actually set me up for physical therapy but I wasn't sure whether or not to go through with it cause I am worried about it doing further damage, as I am not sure if any PT's in my area really are that experienced with these types of issues, and I found this site obviously because some of my symptoms point toward PN but definitely not all, so I have just been really desperate to find any help and relief I can as I am not getting a ton of help from doctors.

[Violet M]

Well, I think it is definitely worth an evaluation but I understand your fear of getting worse. You will probably get a sense right away as to whether the PT knows what they are doing and if they recommend something you are not sure of, you don't have to do it. If you think there is a chance of nerve entrapment, just be careful about doing exercises and stretching. Those are typically what could make you worse if you have an entrapment. At least that's what happened with me. The first PT I went to didn't know about PN and neither did I so I was doing a lot of stretching which was not good. The second PT was very knowledgeable and she was the one who figured out my diagnosis when the docs couldn't. Both she, and eventually Dr. Bautrant, pressed along the course of the pudendal nerve and it was very painful. But the diagnosis did not necessarily explain the cause and that turned out to be sacroiliac joint dysfunction, chronically strained ligaments from exercise, and the pudendal nerve being compressed between the sacrospinous and sacrotuberous ligaments. If you do have pudendal neuralgia, just figuring out the diagnosis won't necessarily tell you what caused it and that will take some further research and diagnostics. Getting a PT eval is part of that process.

Good luck. I hope you can figure this out and find healing.

Violet

[JohnS27]

I have now seen a neurologist and had a nerve conduction study and had physical therapy which seemed like it was helping a little bit but ultimately failed I'm back to where I was before I started physical therapy. The woman who did my EMG thinks that it is illioinguinal neuralgia they are referring me to the pain clinic to have it blocked to see if that's it. The neurologist thinks that it is definitely some type of nerve problem and thinks even if it is PN it's only on the trunk. I just hope that this illio inguinal nerve block works and it is that nerve. I just find it wild to get that from Masturbation... people supposedly usually get it after surgeries and I have had no surgeries in that area or hernias or anything.

[Violet M]

Hi John,

Sorry to hear you are back to square 1. I think the ilioinguinal nerve would be easier to treat than the PN so I wish you good luck with that nerve block.

Violet

[JohnS27]

Thank you! I hope that this is what it is too instead of PN because it is easier to treat!

[JohnS27]

Wanted to post again on an update, went to the pain clinic and my doctor there examined and pushed on my hip and on my pubic area and asked me what hurt worse and at first I thought they felt similar but then he told me that it should be different one should be worse so he did it a couple more times and the pubic area beside the genitals seemed to be worse but both spots had me coming up off the table, anyways so after being referred there originally by the woman who did my EMG thinking I had illioinguinal neuralgia this doctor didn't mention illioinguinal at all but he is going to do a genitofemoral nerve block, I go back in a few weeks for that, but, would illioinguinal or genitofemoral make you have the similar sensations in your right foot on the left side too? Cause I have read about that being linked to pudendal, but from what I am gathering it probably has to be one of four nerves right? Illioinguinal illio hypo gastric genitofemoral or pudendal. So should I just go ahead with this genitofemoral block then if it doesn't work try to get an illioinguinal block then if that doesn't work concludes that it may probably be PN?

[Violet M]

I think it's reasonable to try the genitofemoral block and then the ilioinguinal. It's possible you could have more than just one nerve irritated, you have so many things going on in your list of symptoms. Sometimes when one nerve is irritated it can cause muscles to tighten and more nerves become irritated too so it can be tricky to isolate the problem to a particular nerve. Good luck with the nerve block.

Violet

[JohnS27]

Thank you for the reply, I am definitely doing the block because I'm so desperate to try anything that might work, I can't live like this forever I need to at least get it to a liveable situation again! I will update again and I appreciate your input so much Violet!, it's nice to get opinions from someone who kind of understands what I'm going through.