nerve damage and confusing recovery

[romotronco88]

Hi all,
I believe I suffered a pudendal nerve injury due to prostate play 2.5 years ago. That was just the tip of the iceberg; I've had hard flaccid symptoms my whole life and a lot of weirdness down there on and off. I was doing the prostate play to relieve burning pain in the area, which may have been a sign that I had some pre-existing things going on. I've also had years where things have worked optimally for me in this part of my body, as well.

After my injury in March 2023, I lost most/all sexual sensation for the better part of two years, although I could still perform. I've gone back and forth about decompression surgery, it's so damn complicated given my dick still "works" even if it has no joy or strong erogenous feeling, but have held off. But I have also seen signs of a recovery — that started near the beginning of this, as bowel functions like peeing and bms got more sensation slowly. Good sexual feeling has shown up really only in the last six months.

I've been tallying my symptoms recently and here's where I'm at, as of this summer: 25.9 percent of the time I feel a lot better. During these times, I have sexual desire and feeling. Good sensation upon orgasm. Maybe not the same as before, but pretty damn good. But it keeps disappearing, sometimes with an obvious trigger like my two year old stomping on my junk, sometimes not. And then I go through weeks of down times, where sensation is muted, sexual desire leaves, and I start spiraling mentally. I wish oh wish I could get my damn body working again. And when it's going good, I really feel like I'm there.

Curious if any one has been through a similar journey. Medically, I may pursue a 3T MRI, as one of the big surgeons in europe recommended, as well as a week-long dose of a high potency immunosuppresor, which supposedly may help us learn if inflammation plays a role. I'm always a little bit weary of treatments, because it doesn't seem like anything necessarily works like for other conditions, and also, anything can set you back. Maybe I will see a neurologist.

Anyways, I think my story is hopeful in many respects; if this was during a good period, i'd be like "hey you can recover from lack of sensation, let me tell you how." But I get negative in a moment like this and still have a lot of ground to cover. Happy to connect and chat with any fellow sufferers. There is for sure a mental component — sometimes what triggers a good period is actually just getting horny. But it can be hard to get there.

[Violet M]

I think it makes a lot of sense to try the 3T MRI because that wouldn't set you back, but it could potentially give you important information.

Whether or not it would be worth it to see a neurologist would depend on which neurologist you go to. Some of them know hardly anything about the pudendal nerve, but some of them do know something and might be able to point you in the right direction. So, I don't know if you would be able to ask them the question as to whether or not they treat or are knowledgeable about pudendal neuralgia before you go, but it might be worth a try.

How long it takes to recover from a loss of sensation might depend on the extent of the injury. I had one of my treatment providers tell me that she had a cancerous tumor removed from her leg and it took 12 years to get all of the sensation back. Hopefully your return of sensation will occur much faster than that! But if there is a mechanical issue with something impinging on the nerve, you might need to get that fixed first.

Violet

[romotronco88]

Thank you Violet. It could be a lot worse, given that I've had a lot of sensation return. I do wonder whether I missed the boat on surgery and whether I should have pursued earlier. It just seemed like doctors like Bollens just say, do surgery, and I was wary of that kind of approach when there aren't great diagnostic tests.

I may reach out and have a consultation with him, just sort of scared because it seems he's so bullish/pro surgery in most cases and really believes people need to do it sooner rather than later. I did talk to Conway a few times through this process, and it's been helpful. I wish there were more stories online of folks who had the Bollens surgery and others. There are some, but it's hard to get a good read and what's what and whether there are more negative cases online than not. Can't say I've read a case similar to mine, with lack of sensation, that has been fixed by surgery. But I think the fact that i've healed so much shows there is potential there. Not sure I'd risk losing where I'm at now to go down that road, as things are pretty good. But yeah, more healed, more normal is an allure too, even if "how things were before this" is not really attainable at this point.

[Violet M]

Yes, there is always that nagging question of whether you might be waiting too long for surgery if you do have an entrapment. But, if you are getting better, I can see how it would be very tempting to just wait things out a little longer before heading down the surgery route and risking a set-back. It's a very difficult decision.

I have heard some good things about Dr. Bollens but not specifically regarding return of sensation. So, that would be a question hopefully he could answer, assuming he keeps track of surgical outcomes.

Wish you the best,

Violet

[romotronco88]

Thanks for your response, Violet. Greatly appreciate your help and wisdom here.

Yeah, I put a lot of faith in the fact that nerves are mysterious and heal so slowly. it's been a slow process for me for sure. Does anyone know how nerves can / will heal? the first surgeon i talked to told me give it two years to see. but then he said, you could keep healing. Respect the medical profession, but there are so many gaps in their/our knowledge, it's been quite humbling.

I'm trying to figure out when I'm plateauing, when the recovery stops. But that 12 year nerve recovery you note, gives me a lot of hope. That life is long and body's regenerate. I've had periods of low libido and sensation before frankly; not like this or for as long, but enough that some waxing and waning is normal for me. This is more extreme and also involves other functions being off: urination, bms, overnight erections. but all of those things have been improving significantly, even if they are not quite how they were before.

I get why I didn't jump to do the surgery initially, just felt like my body has found its way out of every other crisis its had. but yeah, part of it was not being able to understand how truly bad things were, and always believing they would bounce back. I've also been gaslighting myself about the mental side, like this is some sort of bad mood I can't shake. I still want to believe that.

[Violet M]

Since you've had this off and on all of your life as you say, it makes you wonder about a genetic component also. Dr. Bautrant has seen PN run in families and I've read that some people naturally have a tight ligament grip at the ischial spine. If that's the case and you have a bent toward PN problems to begin with, often there is a trigger that makes it turn into full-blown neuralgia. For instance, if I had never started weightlifting, I might never have had pudendal neuralgia.

I think part of the decision on whether to try surgery depends on how bad your quality of life is.

Violet

[romotronco88]

Thanks Violet. Does Bautrant do consultations? I'd like to at least explore these options. Not sure if I'd pull the trigger, and hopefully it's not too late.

I think the quality of life issue has been quite hard to answer. For one, my body does work at a baseline level. I've feel like I have decent sensation maybe 5-10 days a month. and even when it's bad, I can still do all the things, just with less feeling. I don't believe this is all in my head of course, but how much mindset plays a role is still an open question, too.

Ultimately, I really miss being a sexual person and having that desire, it does feel existential. But I guess there are other things in life, as well.

[Violet M]

Last I knew, Bautrant still does phone consultations for a fee.

The thing is....if you aren't having pain right now, you have to ask yourself would it be worth it to try surgery and risk developing pain along with your other symptoms. It's such a tough decision.

[romotronco88]

yeah, that was my rationale all along — what if it got worse. the one surgeon i've spoken to said the risk is low. who knows. went all in on my body healing and it just didn't really happen. yeah, would have been nice to give myself this shot two years ago, after my injury, and I'm a bit in a sunken mood that I didn't give myself that shot.