Health Organization for Pudendal Education

Some updates:
- I've read Teach Us To Sit Still by Tim Parks. Very good read, describing a similar situation to mine (though definitely not the same, and more severe), and what an arduous journey it was to "fix" for the author, leading him as far as a buddhist seminar. I wouldn't say it drove me much closer to solving the issue, but it does include some ideas to consider in a pinch, and a quick rundown of the Wise-Anderson protocol.
- calling PN psychology-related is kind of a copout, but it could have a kernel of truth to some degree after all - I've noticed that when I forcibly push down my pelvic floor muscles (a not-quite-Valsalva maneuver), I can feel it better on my healthy right side. I can kind of mentally "force" both sides to feel equally pressed down if I give it a little focus, but it felt uncomfortable in a very bizarre psychological way, almost like there was something "dishonest" about it... like forcing yourself to smile when you're angry, not sure if I can describe it any better. I've had a little experience with (probably) psychosomatic spasms before, but never like this. Also if I stop focusing, it seems to return back to its usual tone.
- the aforementioned "back mouse" pain in the back has pretty much disappeared. It lasted for maybe a week or so. What I did in the meantime was taking several waist-deep hot baths (very hot, not like scalding hot, but at least to the point where it's starting to sting), did some quadratus lumborum stretches, kept massaging that "back mouse" nodule basically at every opportunity I got (the nodule is still there, but painless), and slept on a softer sofa instead of my usual mattress (which alone might've done more work than all of the above).
- the pain in my hip kinda comes and goes. It tends to aggravate with some hip stretches, but right now I'm taking things lightly and it seems to have calmed down at least for now. One suspect that I didn't consider too seriously until now for the hip pain is trochanteric bursitis, despite the initial MRI not showing this, but the trochanteric bursa roughly lines up with the spot where my pelvis used to press on the mattress the hardest.
- what remains is the pain in the left side of the penis and the perineum, and I think I have a new prime suspect. I needed to narrow down PN to a more specific affliction of one of its branches, because I was missing a lot of PN related symptoms. One nerve that neither I nor any of the doctors I've visited appears to have paid much attention to up until now is the dorsal nerve of the penis, whose anatomy correlates well with the presence of edema on the last MRI and its branches also seem to closely match the spots where my pains keep happening. And! There's a spot where the nerve passes under the tiny superficial transverse perineal muscle, and that's the epicenter of my current burning painful sensation:



So should I suspect to possibly have a superficial transverse perineal muscle spasm/tear/fibrosis/something that could lead to impingement of my dorsal penile nerve? Unlike the Alcock canal, I can find very little info on this tiny nameless anatomical space, not that I've been able to look very deep this soon, but I believe there could be something more to it. Interestingly, the superficial transverse perineal muscle attaches very close to the ischiocavernosus. It could also explain my hypothesized "ischiocavernosus pains" as being reactive secondarily to the penile nerve inflammation and the surrounding edema.

Of course, the question would still remain how to fix it up the best. We're way beyond the scope of "everyday evidence based medicine" at this point. We're at "grasping at straws medicine".

I'd also like to ask Violet to perhaps move this thread into a more relevant board, since it has passed the "introduction" point long ago and perhaps it might prove more beneficial to somebody at a more frequented spot.

That problem with pudendal neuralgia and evidenced based medicine is there isn't much research being done because it's considered so rare and there's no money in it.

I would be happy to move this thread. Do you have a preference on where it's moved to?

Violet

Ok. OK. I am going to get straight to the point.
This is not medical advice and I am not a doctor BUT I have been dealing with Pudendal Neuralgia since 2004.
I am a man and I understand the stress that it causes having issues in the genitals.

Two things come to mind.
Firstly don't toss this idea out of the window until you hear me out.
If you have any anxiety or stress in your life and it has been going on for a while then the muscles in your pelvis may be squeezing the Pudendal nerve and aggravating it.
This may be the cause of your symptoms.
This has happened to me and still occurs to this day.
I have damage to the Pudendal nerves from the surgery and they are covered in scar tissue.
Normally I just have to be super careful with no lifting of anything and keep my anxiety level down to have a decent day.

Secondly there is a book written by Dr. Jerome Weiss who has been dealing with pelvic pain for about 30 years. He is currently retired but his book BREAKING THROUGH CHRONIC PELVIC PAIN is an amazing book and can give you some insight into this horrible condition.

I hope that these suggestions help and if you just need someone to vent to I am here for you.

It is slightly similar to my experience (differerence is that I am struggling with right side). Right now I am struggling with nasty flare up again, cca 3 weeks. pain in right shaft (at base of penis), groin, ischiocavernous, bulbospongiosus, scrotum. Burning, stinging, neuropathic pain. I was horribly suffering in years 2011-2014 but after that my condition improved and last 4 years I had long remissions (longest was 13 months but the other were also long like 10 months, 11 months etc.). I was almost sure that there is entrapment in dorsal distal canal, but I did not have positive nerve block (block administated under US guidance did not deliver nothing) and mixed results from dorsal nerve decompresion surgery put me off the operation. I started PT and with relaxation and other activities (long hiking) I siginificantly improved. It is logical, after such horrible pains in 2012-2014 you could not be "de-entrapped" and enjoy 13 months almost without any pain if there is structural damage. So my conclusion is that dorsal penile nerve is highly irritated by muscles and playing main role in this havoc (dont forget cramping pubococcygeus, bulbospongiosus etc) but there is no true entrapment (or fibrotic thickening in dorsal canal does not play a role in pain pattern). Dont have (and never had) any sensory issues, only burning pain. Right now I am battling another flare up (which comes cca once or twice yearly) but those 13, 10 and 11 months were like heaven, no real pain, only som minor discomfort, I even played tennis without any problems. So back to the your insight: your idea might be right.

Hi Flyer,

Thanks for your insights. Good to hear from you again, only I'm sorry to hear you are having a flare-up. It's always a bit disconcerting when that happens because you always have that fear in the back of your mind that it might not go away. Does the flare-up seem to be related to any type of activity or does it just come out of the blue?

Violet

Thank you Violet for your kind words.
I think there are 3 possible factors:
-I havent been to PT more than half year
-I had a Covid before Christmas, it was not serious but the infection left my body in completey disarray, muscle pains, fatigue etc.
-I had my last major flare up exactly one year ago and there is always some portion of anxiety in my mind, anticipatory anxiety I mean.

Hi Flyer,

I'm so sorry about the flare. I was just saying on another post that I get them too and I also have a ptsd-type reaction to them. I try to remind myself that they do pass, so you can hopefully remember that. I find it is important for me to manage the pain (I use a vinyl heating pad on high) to manage the emotional reaction. Anyway, take care and keep us posted on how it goes.

April

flyer28 wrote: ↑Sun Jan 21, 2024 10:44 am Thank you Violet for your kind words.
I think there are 3 possible factors:
-I havent been to PT more than half year
-I had a Covid before Christmas, it was not serious but the infection left my body in completey disarray, muscle pains, fatigue etc.
-I had my last major flare up exactly one year ago and there is always some portion of anxiety in my mind, anticipatory anxiety I mean.

Hi Flyer,

All of those reasons sound like they could contribute to having a pain flare-up. I have heard that one important way of dealing with post-covid symptoms is to get plenty of rest, so hopefully you can get some extra rest. Are you able to get back to see your PT pretty soon?

Violet

Hi Violet, I was at my PT last Friday, he stated that my muscles were contracted but the treatment was not as painful as I assumed to be. Still battling with flare-up, cca 3 weeks. It is tough especially in mental dimension, becuase I had long period without any pain (and no pills).

Flyer, That's a good sign that PT didn't cause too much pain. Hopefully you are just dealing with tight muscles and not an entrapment. Do you have any pain medication that can help you get through this?

Violet