Seeking input on mysterious condition!

[happyman]

Yes im willing to travel as long as the doctor is a genuine person. thats all i can ask for. I recently chatted with someone here on this forum about their exprience with dr filler and he just sounds like such a nightmare. lets try to set me up with someone else

[Violet M]

Maybe you could find someone locally who does pudendal nerve blocks, just for diagnostic purposes, before you traveled out of state. Some interventional radiologists do them. If you had no temporary relief, even for a few hours, from a nerve block, I'm not sure if it would make sense to travel to a PN specialist. There are some PN doctors who do phone consults, so that would be another thing to consider before traveling -- getting advice by phone from one of them. You would want to provide them with as much of your history as possible prior to the phone call, obviously.

Violet

[RD222]

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.

[cwb125]

[harry_nerve]

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[cwb125]

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.

While I wouldn't call myself "fit" because I'm on the thicker side, I'm definitely strong. I remember one doctor telling me my pelvic muscles looked really good.

Pelvic Floor PT helped me more than almost anything, however, because my muscles were "too tight." It sounds like the PT's the two of you went to were having you do Kegels. What you called a "massage," a lot of breathing exercises, and anal dilator work is what helped me. Basically, the opposite of a Kegel.

I do think there is a lot of skill to being a Pelvic Floor Therapist. Furthermore, they are usually better at certain kinds of therapy over others. For instance, not all of them are comfortable treating men.

This is just food for thought. Although I think happyman has the right idea about finding a good doctor and yougave him good advice in your post, I probably would have been upset but for pelvic floor therapy.

[Violet M]

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.

There have been many times I've thought of suggesting using heat for guys but I typically haven't because I wasn't sure how it would work for men. So, thanks for that explanation, RD. It's good to know that it can be helpful for guys. Using heat was a huge help to me, including doing hot sitz baths.

[RD222]

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.

While I wouldn't call myself "fit" because I'm on the thicker side, I'm definitely strong. I remember one doctor telling me my pelvic muscles looked really good.

Pelvic Floor PT helped me more than almost anything, however, because my muscles were "too tight." It sounds like the PT's the two of you went to were having you do Kegels. What you called a "massage," a lot of breathing exercises, and anal dilator work is what helped me. Basically, the opposite of a Kegel.

Hey cwb! For me the PT massage was just that--very gentle external muscle release of a few different muscle groups. (Unless it's not appropriate to call muscle release a massage in a PT context? It's always felt to me like the right word to describe it.) Too much pressure and I was in trouble, especially along the levator ani; I think my initial trauma was along the nerve somewhere there on the left side, but I'm honestly not sure. There was some internal targeting but not much, and never kegels. Everything was aimed at lengthening and relaxing the muscle fibers in the end. My pelvic muscles were strong like yours were, and short and too tight. Heat has been an absolute godsend. I often sit on a heatpad at work, bought a plug-in heated seat for my car, and use the pack liberally.

The turtled penis thing was explained to me as a defense mechanism just like being in cold water, except as an injury response. Made good sense to me, and it didn't seem like a coincidence, then, when heat helped.

Wishing you all the best!

[RD222]

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.

There have been many times I've thought of suggesting using heat for guys but I typically haven't because I wasn't sure how it would work for men. So, thanks for that explanation, RD. It's good to know that it can be helpful for guys. Using heat was a huge help to me, including doing hot sitz baths.

Absolutely! I'm sure everyone's mileage varies, but for me its been the single most helpful tool. I'm like a walking product lifecycle test for Pure heat pads at this point...

[Violet M]

I'm like a walking product lifecycle test for Pure heat pads at this point...

Love your sense of humor. Being able to have a positive attitude helps for sure.