Seeking input on mysterious condition!

[April]

RD:

I am completely reliant on heating pads too. The temp has to be really high for it to suppress the pain but it does. For years, I relied only on ice, but I was really happy when I discovered heat because it is safer and easier to manage (if you're at home) than ice.

April

[happyman]

Hey happyman,

I do think you have a PN issue, because I recognize much of what you're describing, and I hope I can help validate some of what you're feeling. 2.5 years ago the left side of my penis went numb during a climax--it happened with a jolt and I knew something was wrong right away. My penis turtled exactly like you mentioned, and I lost erectile function completely for a few months, and didn't dare try having sex again for seven months. Same with the tingling, although for me it also progressed to pain after a while, and I couldn't really sit down for about 18 months, which feels crazy to type, now.

The medical system is very bad at IDing PN issues. Urologists I spoke to, especially, seemed to know nothing about it. I really had to push for diagnostics, and was wildly misdiagnosed a couple times. My MRIs and other tests also typically came back clean like yours. My (second, and still current) neuro was mostly clueless about PN, but we always talk through things and he's learned alongside me--and ordered various tests--which I've found pretty valuable. Ultimately I did get a PN diagnosis, but the self-diagnosis came way earlier. Finding this site was part of that process for me, and it seems like maybe you're on the same path.

I'm pretty shocked that the pelvic floor therapists you've seen, at least, haven't proposed a PN diagnosis to you, unless they have no experience treating men. Your symptoms couldn't really be any more targeted to the nerve.

All of my treatment has been conservative. The pelvic floor therapy exercises didn't help me at all. I was also quite fit when injured, and my pelvic floor was plenty strong; I suspect yours is too. Gentle muscle massage on different pelvic muscle groups by my PT *has* helped, however, and she's been a godsend in that I have someone to discuss my progress, goals, and concerns with on a regular basis. I apply a lot of heat to my groin muscles when privacy allows, and that helps a lot. If you haven't done this, please give it a try: put a microwavable heat pack next to your penis on your inner leg and see if the turtling seems a little better, even if just temporarily.

Over time my penis un-turtled, and erectile function came pretty much fully back. My sex life is normal again, although the nerve can still get annoyed sometimes and dampen sensation a bit. I can't be as active as I was pre-injury, but I'm jogging again and playing golf and disc golf; I've cut out cycling and the more explosive sports I used to play, at least not at full speed. I'm not giving up on ever getting those back, but re-introducing things gently has always been the best idea. I'm SO much better than before, but also still dealing with it every day. It's a sliding scale.

I have a few Qs for you, if you're willing. Do you have any pelvic pain, at all? Is the tingling triggered by anything in particular, and do you ever feel electric shock sensations in the perineum or penis? Is your activity level the same as before you got injured, or have you dialed it back? Do you feel any nerve sensations in your legs or feet, even if it's just occasionally? Any pain/tightness in the piriformis muscle area? At this point do you have any medical professional you trust to talk to regularly (not like every 3-6 months) about what you're experiencing?

I agree that the 'hard flaccid' thing probably isn't the way to go. I'm not totally clear what it even is, but from the little I've read it seems like (mostly) kids are annoying the shit out of their pudendal nerves, sometimes on purpose, then dealing with the various consequences? It doesn't really seem medically relevant. Your symptoms started with a trauma, just like mine.

Sending you all the support a faceless stranger on the internet can muster. I hope you're kind to yourself. I used 'lower back injury' as a euphemism to help express that I was dealing with some really difficult health stuff to colleagues and extended family, and build a much-needed support system without the awkwardness.

Also, Violet, you're a hero for all you do on here--thank you.

Hi RD,

i must have missed this. Apologies

thanks for writing me. right off the bat, im going to have to mention that the few months you describe for yourself is a few *years* instead for me. All the while things only getting worse. Not to be a debby downer but I hope that can provide context why I dont share an optimistic or hopeful tone.

Yes, we can chat all day long about doctors being lazy and arrogant. It would be a waste of either of out energy tho

PTs didnt ID me with PN because when i saw them originally (that is in 2021), I simply didnt have tingling or burning. It simply wasnt a thing in my life. In fact, If i could trade my experiences from before I ever saw a PT to now, I 100% would. I feel like they made me worse and irritated my insides with their internal work. I understand the intention was good, but I fear PT played a role in making me worse. I recently started seeing a physio and were just working on lower body work to kind of create neuromuscular awareness in the area. Cant say whether its helping or not. But this is the same PT who helped my cousin walk again, so I stay hopeful they can help me with my symptom too.

When you say your penis unturtled and you got erectile function back, it leads me to believe we didnt share a severity in our cases at any point in time. For me its been 4 years, from 19 to 23, and I only seem to get worse. I dont think we share the same situation. My penis makes an hourglass shape, the head and underbelly does not erect, i do not get erections ever not even nightime erections, my penis is retracted to intensely that I can not physically bare wearing a pair of jeans, and there is inexplicable tingling and burning sensations that come and go as they please. I am at mercy of some invisible god at this point. There is no physician that has cared and thats the reality. There are no "good days" and I dont really have anything that provides relief other than laying in bed with my legs in butterfly position. Again, I dont say this to be rude or negative- i say it to be as transparent as possible as I truly believe staying "fake hopeful" or "fake positive" causes people to take me less seriously.

>I have a few Qs for you, if you're willing. Do you have any pelvic pain, at all?

Not really. Kind of a vague question though

>Is the tingling triggered by anything in particular, and do you ever feel electric shock sensations in the perineum or penis?

I have no idea what the tingling is triggered by. It comes and it goes randomly. Activity makes it a lot worse in my thighs and legs is all Ive been able to track

>Is your activity level the same as before you got injured, or have you dialed it back?

I lay in bed all day. I do some pt stretches/lower body a few times a week.

>Do you feel any nerve sensations in your legs or feet, even if it's just occasionally? Any pain/tightness in the piriformis muscle area?

Yes, frequently. Yes my piriformis is tight and tender. Thats actually what the physio and me have been stretching out for a couple months now.

>At this point do you have any medical professional you trust to talk to regularly (not like every 3-6 months) about what you're experiencing?

My physio gladly listens to me for 225$ an hour.

Again, I apologize if any of my responses come off as being a caustic a**hole but thats just kind of the state of affairs right now with how much exploitation and gaslighting Ive seen from the medical system within the last 4 years. I have by all means become a misanthropist and thats kind of like a mental scar that will never go away regardless of if I got physically better or not. People suck

[RD222]

Hey happyman,

You're certainly right that your case is more severe than mine. And I remember all too well my headspace from the worst of it, so I don't think your reply is overly negative or caustic at all. Being realistic--that the situation is just a nightmare--is more mentally healthy than pretending otherwise. My mom used to come over at lunchtime a couple times a week for moral support while I tried, and usually failed, to shuffle slowly around our neighborhood. I held her hand like I was five again (aged 36 at the time) and tried not to cry. I eventually started anti-anxiety meds to tamp down the panic attacks that came on randomly. I'm so sorry that you are going through everything that you have described. I think I understand some it, but definitely not all of it, so I want to acknowledge that.

I also didn't mean to project that I believe you will magically improve if simply do such-and-such the same way I did. Your comment about being at the mercy of the random impulses of some invisible god definitely touched a nerve, if you'll pardon the expression. That's a very good way to describe it. But to the extent that we are fellow travelers on this stupid road, I still want to lend you my support. And I don't want to miss the chance, even if it's a small one, to possibly be useful to you in some way.

A couple of my questions were aimed at understanding whether you had obvious feedback from your body when things are "good" or bad for the nerve. It's not hard to imagine PT work making it worse if it wasn't the right treatment (and if such a treatment even exists). Even knowing my diagnosis, my PT has sometimes messed up and exascerbated things. The treatment we ultimately settled on was VERY gentle and all external. I am glad you're with a physio and working on neuromuscular awareness and piriformis tightness. That can only be a good thing. I hope that person acknowledges you have PN and everything you guys do is in that context. Plus, $225 or not, optimism or not, progress or not, you need someone to talk to about this shit.

Butterfly position is very dangerous for me, risking a nerve shock that messes me up for a while; I wonder what it says about the epicenter of your injury that it brings you relief. That is at least one reliable piece of info for you to work with. Do you put a heatpack on your inner thigh when doing that, or lay on an electric heat pack across your upper glutes? If not, it may be worth adding to the mix to see if you notice any benefit. I would give up all medical care for my PN before I gave up heat therapy. It's not even close.

You've probably tried a prescription muscle relaxer, but that might also be worth adding to the mix if you haven't. It never brought me any significant direct relief or anything, but it does feel productive when things are especially bad. I've never used it regularly, just on a targeted basis.

Yours sincerely,
RD

[RD222]

RD:

I am completely reliant on heating pads too. The temp has to be really high for it to suppress the pain but it does. For years, I relied only on ice, but I was really happy when I discovered heat because it is safer and easier to manage (if you're at home) than ice.

April

Heat right at the edge of painful works best for me, too, April. The plug-in heated seat cover for my car on has been a fantastic addition laid over a honeycomb gel pad. (I don't know about you, but the cutout pads never did a thing for me except concentrate the pressure uncomfortably elsewhere.)

All the best,
RD

[April]

Oh, I've never used that. I'll have to look it up. It is hard for me to get relief if I don't have the vinyl heating pad directly on my skin and on high. But, when you're in the car, you have to make do with what is possible:) Thanks for the tip!
April

[RD222]

I got this one:
https://www.amazon.com/Sunny-color-Velo ... B07YBNK8D8

I like it a lot. It won't win any beauty contests but it's worked well. The high setting can get quite hot even through clothes. It plugs into whatever that round car power outlet is called these days, and the power switch ends up sitting conveniently close at hand.

It does do that heatpad thing (universal, as far as I can tell?) where sometimes it will just be hotter/less hot than others.

[April]

Nice! I may order this. I also have a bad back (in fact, I also use heating pads for that--our house is full of heating pads:)) so the heat going to the lumbar back would also be good.

thanks,
April