PN centered on the penis with ED - need help and advice

[marcc]

Hello

I am new on this forum. I am 30yo and my issue started 2 months ago after an episode of intense masturbation with edging for several hours (that now feels like the most stupid thing i've done in my life...)

Starting the following day, I have been experiencing on a regular basis the following symptoms, which keep on evolving with time:
- shooting/stabbing pain in the right side of the penis;
- sometimes, "compression" pain at the basis of the penis, as if the penis was "strangled";
- the pain occasionally radiates to the groin, the pubis and the basis of the scrotum, always on the same side;
- erectile dysfunction: at first and for weeks, no erection in the morning or with stimulation whatsoever.
Things got better when i was prescribed 5mg Cialis daily (still ongoing), which actually worked too well at one point and resulted in a case of priapism (4-5 hours). Since then, erectile ability has progressively decreased and any pleasant sensation is lost, just like if my penis did not really belong to me.

At some periods, the symptoms got significantly better for a few days (only slight pain, no ED at all - thanks to the pills) before coming back with a vengeance each time.

I have on the other hand no trouble sitting even for extended durations, or urinary/defecation issues.
Since it started i've seen several urologists, who didn't seem to know much (if anything) about pudendal neuralgia.
Radiology exams (penile echo-doppler & MRI, pelvic and lower back MRI) were all normal and rule out an organic basis for my pains.

Only one of the urologists found out that my case is very likely a nerve issue. He first mentioned "neuropathic pain" and was confident it was not too severe at first but now sounds more concerned and thinks that it might very well be an actual pudendal neuralgia. I'm seeing a neurologist soon.

I'm really feeling hopeless, feel like my life is ruined since it started, and occasionally get suicidal thoughts.
Have some people here encountered similar symptoms/disease history? Is there a way out of this and chances to get a normal life back?

Thank you for reading.

[Violet M]

Hi Marc,

Well, I think it's too early to conclude there is no hope for you. There are lots of avenues you can pursue to try to get this healed.

The first thing is to get a proper diagnosis and try to figure out for sure which nerve or nerve branch is affected. If the dorsal penile branch of the pudendal nerve is what is affected and the main pudendal branch isn't, the treatment would be different than if it's the main branch. If you have tight pelvic muscles such as bulbocavernosus, bulbospongiosus, obturator internus, or levator ani muscles that are impinging on the nerve and causing the pain to radiate, then it might be important to get a physiotherapist to get those muscles calmed down.

If you have small fiber neuropathy from damage to the tiny nerve endings then you have to focus on getting those to heal because peripheral nerves can heal, especially at your age. That would mean resting those affected nerves and avoiding anything that triggers the pain temporarily. I can suggest other ways to get the small nerves to heal but I don't want to go down that rabbit hole unless you thing that's what is going on. See what your neurologist thinks of that possibility.

Shooting stabbing pain can be treated with drugs like lyrica or clonazepam. You might not want to take something like clonazepam around the clock though -- maybe just at night to help you sleep if it's keeping you awake because you can develop a tolerance and addiction to it. But I would consider drugs a temporary measure to keep you from developing central sensitization just until you can find treatments that provider more permanent relief.

I don't know where you live or your financial situation but if you are able, it might be worth it to just go to one of the experienced PN doctors for a proper diagnosis. Just do a lot of research on who you think would be the right one for you.

In answer to your question on whether other people have experienced what you have. Yes, we have heard similar stories in the past. Hopefully some guys will come on and answer you.

If you think anxiety plays a role in your situation, you might want to do a search and read Ezer's posts about the mindbody approach to treatment.

Violet

[Violet M]

Forgot to say that since it's more on one side than the other that would make me more suspicious of the branch on one side being affected somehow, than small fiber neuropathy, but I could be wrong.

Violet

[marcc]

Thanks a lot for your thorough and helpful reply Violet. Glad to see from your bio that you managed to overcome that disease : )

I live in Paris, France and just had an appointment with one of the very few PN doctors here (can't imagine how difficult it would be to find one in a more isolated place... seems to be the same for pelvic pain physiotherapists)

For the moment i'm still clueless about my precise problem: the doctor examined me closely and prescribed me Lyrica for the 3 next months (a small dose it seems, but my pain is most of the time very bearable) saying it'll help for the diagnosis. I wonder if it's a normal first step before more definitive exams (electrophysiological tests, nerve blocks,...)?

And yes, if any guy has had the same sudden ED/numbness issue due to PN, i'd like to hear about their experience.

[flyer28]

Hallo Marcc, I am struggling with somehow similar problems like you almost a decade. The better periods with low level aches and dyscomfort are interchanging with flare-up. However, last year I had 8 months period (my longest) with only minimal dyscomfort and I was living a normal life. Now I have usual "spring flare up" with vigorous pain. My problems started in 2009 also after prolonged sex/masturbation with a lot of edging. All examinations were useless, even the nerve blocks. Today I am leaning toward explanation that it is some kind of general pelvic myoneuropathy, not a single problem of pudendal, despite the fact that my right side is more problematic then left side and I sometimes feel some "clump" behind my penis..I dont have shooting pain, but classic neuropathic pain in penile shaft, groin and pubic area. Interesting thing is that "constriction of penis" - sometimes I have it in unbearable fashion, sometimes absolutely not.
This leads me to the hypotheses, that "edging" by masturbation can lead to general havoc of pelvis, where the nerves and muscles are in inhospitable environmet, in the space full of trigger points a and limited blood flow. "edging" alone cannot damage a nerve. This was confirmed by neurosurgeons and pelvic specialists I was asking. It is rather a cumulative set of microtrauma, leading to the mess in your pelvis which is hard to treat. I have some part achievement but no cure forever.
In german section of this forum, user fangshi writes:

Ich hab mir dann auch lange Schuldgefühle gemacht, dass ich als Jugendlicher durch diese Art Penismassage irgendwie den Nerv geschädigt habe, aber ich denke mittlerweile das ist unmöglich, andere Leute gehen viel extremer mit ihren Geschlechtsteilen um. Ich denke aber dass ein sowieso schon zu Verspannungen und Entzündungen neigender Beckenboden/urogenital Bereich durch gewisse "Mikrotraumata" der letzte Kick gegeben wird quasi völlig zu verkrampfen. Ich habe also die Theorie dass gewisse Teile des Beckenbodens in einem Zustand ständiger Verkrampfung sind und dadurch Funktionsstörungen und Schmerzen auslösen, weil in Nerven und umliegenden Gewebe nicht genug Blut etc. ankommt.

It is basically the same hypothesis like mine above, I cannot believe that the dorsal nerve would be damaged when you can have erection, ejaculation, feel sexual stimulations etc. The other thing is, that whole pelvic basin (including pudendal nerve) was heavily thrashed and is probably constantely irritated.

[Violet M]

I think like Flyer said that pelvic myoneuropathy is a possibility, but if that is the case, I think there are things you can do to promote healing because peripheral nerves can heal. If the irritation is continuing from something like a nerve entrapment in ligaments or fascia, then the nerves would not be able to heal, but if there is no entrapment, maybe the nerves will heal over time.

Violet

[marcc]

Hi flyer,
thanks a lot for your reply. Your issues seem indeed to be quite similar to mine and, just as Violet's, your experience and knowledge is very valuable.

I'm thinking more and more that years of edging in my sex and masturbation practices were detrimental to the nerves of that area, not just that particular episode i mentioned. And you're probably right pointing out that muscles are involved too. I realized only recently that i tend to contract (or 'kegel') my pelvic muscles a lot during sex, but also outside any sex activity. I should definitely try pelvic physiotherapy.

Recent update:
I just experienced again a week full with almost no symptoms. Pain had almost disappeared and erectile ability and penile sensation had came back to normal. I was almost starting to think that my problem was just a mild neuropathy and that my nerves were on the way to heal.
Unfortunately when i started resuming sex everything went downhill again after a couple of days: the different kinds of pain in a succession (stabbing/compressing/burning... at higher levels than before), ED came back quickly and i reached a new bottom mentally, thinking i am now doomed to a life where having sex would systematically yield to a painful and debilitating aftermath. Numbness is also back to some extent in alternation with the pain, same feeling as if i was experiencing a long refractory phase of several days. I also have several clear trigger points in the perineal area, right side. Not sure whether it's safe to try and massage them myself.

I read from your other posts on the forum that delayed (1 to 3 days) post-ejaculatory pain is typical of neuropathic issues (though i'm not sure whether it's ejaculation itself, or the fact that i kept on having sex in the following couple days - until it became impossible again - that caused it in my case).
What would you suggest? Is it worth it that i try to avoid any, or restrict to the minimum, sex activity for a couple of months in the hope that it helps the nerves to heal? Not meaning to pry, but how do you manage keeping a sex life if it automatically goes wrong each time? I tend to have a strong sex drive and it's really depressing to think that at 30yo i might be able to only have sex once in a while, when my body lets me, for the rest of my life.

Thanks again for your input.

[marcc]

I think like Flyer said that pelvic myoneuropathy is a possibility, but if that is the case, I think there are things you can do to promote healing because peripheral nerves can heal. If the irritation is continuing from something like a nerve entrapment in ligaments or fascia, then the nerves would not be able to heal, but if there is no entrapment, maybe the nerves will heal over time.

According to the neurologist i saw, a nerve entrapment in my case is very unlikely (i think that's what he figured out upon auscultation, as i didn't have any strong painful reaction at that moment). Peripheral nerve irritation seems to be the "less bad" situations, but i still find letting it rest for several months with no certainty of success to be quite discouraging.

[flyer28]

I think that it is too early to have definitive diagnosis. My beginnings were very similar. Now the periods of remission (although no complete, but periods with low level muscular ache) are interchanging with flare-ups. My pain is usually not devastating enough to risk decompression surgery, but I am far from living a happy life. There are periods when I am living almost normal life, but only till another heavy flare-up always breaks it...
I would advice you: 1. Try this Lyrica regimen, 2. Find a very skillful PT for pelvic examination, this is clearly neuromuscular upset and qualified PT might help a lot...3.Try to abstain from sex/masturbation for at least 2 months...
There is surely high portion of anxiety which is heavily contributing. I know it very well. Accidentaly, my first flare up I had during my visit in Paris and I am still somehow afraid to visit this city again...despite traveling all around Europe. Anxiety is a very mighty enemy...Be strong man...

[Violet M]

I don't know if it would be worth it but you could try some medication that dampens your sex drive while you are abstaining for a little while. I'm sure your doctor can tell you what you could try. Maybe an antidepressant.

Violet