I wish I could ‘like’ your post!!! I think it would be VERY useful if people who have had the diagnosis done, in whatever country, should supply the details of where they can get these tests… the difficulty with getting the diagnosis is actually finding the specialists that do them.
Anyone from the UK!? (pretty please)
Hi!
I’m reading up on systemic/localized inflammation and I came across your thread about neuropathy. Where do you stand now? Have you had any success in treating it?
Thank you in advance.
This is a symptom more than a cause. But could be directly tied to autoimmune response of the body. Perhaps this plays into that line of thought, we really need to get those antibodies checked.
I know I have asked this before somewhere else in the forum but where exactly is this point of blockage found in the diagnosis (i.e the edema).
Can someone point it out on a diagram please…I suspect it is behind he prostate where the pudendal nerve travels down to finally reach the penis…I guess somewhere near the top of the prostate??
Happy Holidays!
Does this tell us that heavy weight lifting can be counterproductive if exercises involve directly or by accident pelvic muscles?
I was diagnosed with pudendal neuropathy. My Dr. said no weightlifting! He said climb stairs just one at a time and no sitting.
I have followed these protocols and can say that the pain I had is completely gone so there has been healing. I unfortunately still have a numb penis which has not gotten better with time. It is my number one complaint with PFS these days.
Unfortunately there are not many docs who treat pudendal neuropathy so folks suffer for ages before finding help.
The nerves take a long time to heal -It took somewhere between 6 months and a year for the pain to go away.
Tlecum thank you for the info. Were you using an anti-inflammatory diet? it seems really strange to me that nothing more effective can be done. I hope I’m right.
And by the way, how can you avoid sitting??? I do have to sit down about all of my day. This would really be a problem. Fortunately I do not have pain, only nerve tingling and sometimes contraction on the pelvic floor/testicles. I will try to get a diagnose for this as soon as possible and maybe I’ll enrich the pool of neuropathy cases.
If you dont have pain then there is not a problem. I use a sit pad -simply one of those curved pillows people take on the airplane with them-when I do have to sit. I sit on the pillow so that the center is over my crotch and therefore no pressure on my perineum. I actually have been trying anti-inflammatory diet these days. My A-hole no longer itches all the time and I no longer have a continuous rash above my lip. Don’t know if any of it is related. Good luck.
I’m not sure. I mean, something’s wrong with nerves I am pretty sure, and there is some good theoretical base to think so. Those that had the diagnosis for pudendal neuropathy, did they all have pain? I think nerve compression/inflammation (obviously due to biochemical causes, ie allopregnanolone etc) is at the root of sexual problems too. I am discussing this in the thread on ALLO. I mean, my penis feels (well it doesn’t feel at all) dead usually but if I profoudly relax the pelvic muscles or sometimes by simply changing position, it suddenly returns some kind of normal and I feel it again. If you have sexual sides such as numb penis, no spontaneous erections, it would be interesting if you could take the diagnostic exams again and see if you still have some problems with nerves.
i have no pain, only almost all kind of sexual problems one can have, particularly e.d. can kegel exercise help or maybe they can worsen my nerve damage (whether i have it) ?
Esermon, I can’t reply to your question. Apparently normal kegel seem to worsen the problem while inverse kegels seem to be ok. However if there’s some kind of inflammation you might consider treating this. If you have serious ED I don’t think kegel will be of tremendous help and maybe can really worsen the problem. You can follow antiinflammatory diets. I am considering fasting myslef, not long as the one you did (there is pretty much difference), intermittently. There is evidence that short (1/2 meals) fast are very anti-inflammatory and I am discussing (alone for the moment) about it in a dedicated thread. Fasts >60 h appear to loose antinflammatory properties. I will let you know how it goes.
I would try getting a diagnosis tough. This Dr in Rome and Bologna appear to have some credentials to do this kind of diagnosis.
dr-francescopesce.eu/frances … 000001.htm
Androgen dependent zones are present also in the spinal cord. So, there might be a problem there too.
If you want to gain something in time, I would suggest to follow the advices on this website, apart from an antinflammatory diet and good sleep.
Using exercise to balance nervous system
naturalpathhealthcenter.com/ … us-system/
Everything I experienced until now, strongly tells me what is the path to heal at least in my condition. I didn’t have strong erections after withdrawing finasteride but I could have decent erections with stimulation. Then my uroligst touched my prostate with his finger and in the evening I ran and made some weight lifting. After that I was with complete ED and I my penis shrunk tremendously, maybe also because I was scaried who knows. This condition improved very slowly.
I didn’t have much improvement by forcing myself into exercise with wheights or running. In fact, after I was diagnosed with tachicardya (which is a marker of sympathetic nervous system hypertone) as a consequence of Dostinex, I started running and my heart rate was constantly at 160-170bpm while running. Sympathetic nervous system hypertone to my opinion is brought by reduce neurosteroids ALLO and THDOC which are anticonvulsive/anxiolytic/sedative, both centrally and peripherally. There wasn’t any particular improvement with exercise. I stopped exercise for a while and after that my condition improved far faster to an extent that my erections are now at 80-90%.
The experimental results and much of our stories fit with practically all the important theories on this website. Tough, everyone is different and it is clear that one can have one symptom of this neurological condition while the others don’t.
Esermon, you say that Testosterone gel made you worse. Someone reported, in the ALLO thread, that testosterone reduces ALLO itself, so it is not strange it made you worse, and made worse many others. You are probably severly depleted of allopregnanolone and/or you have a pudendal nerve inflammation condition going on as a result of this.
when did i say trt made me worse? I don’t think it did, i don’t think it helped me either. What are inverse kegels? An example of antiinflammatory diet? What should i eat and what should i avoid?
I searched but I couldn’t find your message. Probably It wasn’t you, but there was an Italian guy, maybe 40, who used testosterone after drinking the preceding evening. He said it brought him back to point 0. however it might have been a consequence of the alcohol. In fact Testosterone has mild antiinflammatory properties. This counteracts what mentioned in a study posted, that T decreases allopregnanolone. There’s nothing strange in this tough, to me at least.
As a matter of comparison, yesterday I drank and ate a LOT because of the birthday of my friend. Ciuchi mezzi. PLenty of simple sugars, carbs, and alchol. Today I’m pretty bad, and I felt my dick was about to shrink massively. Fortunately this didn’t happen much but it’s some kind of crash and it is fucking stupid to act like this, to withdraw gains in only one evening. ED is somewhat bad today, damn. This still confirms to me that there are inflammatory conditions going on and this is why we experience crashes. From what I know, chronic inflammation prevents the body from healing so if this is the case, by maybe a simplicistic point of view, we need to put it at rest in any way for long enough time to gain this healing. Healing that obviously can take pretty much long time even if you stimulate it.
You can find material over the internet on inverse kegels, also on PH I think. I know one exercise, you need to reproduce the contraction that you have when you intentionally stop the flux of urine while you’re peeing. I don’t do it tough, I don’t think there is evidence that this cannot be counterproductive.
Your last question is the million dollar one. There is a lot of controversies on this you know it. Looking at those that recovered with diet is a good idea. But there is plenty of things to read over the internet and many have different opinions. I am looking into this, it’s a hard task. Tough as I said chronic one day fasts or one meal fasts are very interesting because there is strong scientific evidence(to the contrary of prolonged fasts) in animals to support this, some less in humans because studies are pretty recent. I am posting a study where rats with spinal cord injury are getting healed with intermittent fasting. This tough doesn’t function in mice.
imao alchol is bad but avoiding it doesn’t help a lot
about yrs i didnt touch a glass
it’s comprehensible, tough, stopping alcohol probably avoids getting worse and crashing, to some extent. I don’t see therapeutic effects in alcohl. It just gives some relief in the short term.
That is normal kegel for me, i’ve done it for months, i don’t know why but i think it worsens the condition, particularly ejaculation.
It might be, I stopped looking into kegels because I really don’t think it can be productive. What is needed is profound relaxation of all the pelvic muscles. When I do this I SEE there is really something strongly abnormal: my penis sometimes starts to contract in concussion (like if there is signal wanting to pass) while I relax the muscle at the base (bulbo-cavernosus muscle) and if I insist I can bring it back to normal but it turns back to the dead state after some time. Tough this brings slight improvement in the general condition each time and I really do not get back to point 0. This did gave me stable improvements. There is definetly the silencing of the dorsal nerves of the penis in my case but it can be attenuated in time. I think this can be done because of the somatization effect, which is indeed what this method is meant for. It probably increases the neurosteroid production in time. One rapid way to test this is to simply lay down, close your eyes, breath, relax and feel all the muscles of the body, particularly those of the pelvis and base of the penis, as if they are deeply heavy. If you don’t feel anything, you can focus the “heavy feeling” also along the muscles that surround the pudendal nerve (view figures). There is no mistery that some of us have retracted testicles; this is because our muscles are in continuous contraction because of the lack of neurosteroids. For the tescticles you can focus on the creamaster and the dartos muscle. What muscle is in contraction well, this depends on the patient. It might be one or all of 'em. Taking alfa blockers might not be a good idea because while they relax the muscles, they can bring inflammation because of the low neurosteroids; and inflammation can be really bad. The olistic manner is far more sure and standing. So I am now implementing this with IF.
about testicles i have the opposite problem, well it isn’t a problem for me, i don’t care about testicles now, my testicles are quite down, they should be higher and “fuller”, they are not retracted, they’re too down, but it really doesn’t matter now for me. Sometimes (well a bit more often then just sometimes) i feel premature ejaculation well let’s say almost every day and this premature ejaculation is born by a strange feeling i have at the base of the penis when it is erected, this feeling makes almost impossible for me to keep the penis erected for too long, i have the need to ejaculate as soon as my penis is erected and i think this feeling means there is something inflamed somewhere at the base of my penis.
