As embarrassing as this is I'd like to ask if anyone has info or advice to share with me.
I have lost most of my sensation throughout my entire penis. I learned that it is a complication of priapism which I've had repeatedly since my early teens. This is really not well documented medically (the numbness or lack of sensation). The priapism type I have been getting is called stuttering priapism or recurring priapism. It has helped me to study priapism and how it can be treated.
But I am hoping that some people here can tell me what I can use as treatment for the numbness. The numbness and priapism has ended my sexual function almost completely. I still get erections but with them is often intense pain. Sometimes I get sharp tingles or like prickly itchy feelings. I cannot achieve an orgasm. But sometimes can ejaculate with sexual stimulation. But not without great effort and pain. When I do, I end up having alot of soreness and edema in my penis afterward.
Is there still hope?
I already have dealt with this for more than 15yrs and I'm tired of waiting for it to just get better whenever it wants to.

Gosh, MrGas...I wish I knew more about priapism, but I don't. I did search a bit, though, and I found some mention that a stimulating lubricant might help, maybe something like aloe vera. I do hope you find some relief from your condition, and that you will share it if you do!

You might consider looking at anything that can help restore peripheral nerve function. I'm mostly on the 'peripheral neuropathy' neurotalk forum--because, not co-incidentally, I have peripheral neuropathy. Mine is "ideopathic," meaning, my doctors have no idea what's causing it. So, besides taking the prescribed drugs to try to reduce the pain (but which do nothing for the numbness), I'm often doing research to figure out what might restore function to the nerves.

I was taking vitamins and doing yoga and getting good results--at least keeping it at bay. After a period of unemployment and discouragement, and not taking vitamins or doing yoga, I'm in a worse state physically. Because they don't really know what's causing my disease, it's hard to say if that's the cause, but... I'm now back doing my research on vitamins. (And taking them, and doing yoga.)

At the start, my neurologist recommended some vitamins (which surprised me, since I've never had a doctor take vitamins seriously before). A general multi-vitamin, 2000mg Vitamin C, 400mg Magnesium, a B-vitamin supplement, and Alpha-lipoic acid.

Additionally, I've learned that other vitamins can help your nerves heal. Benfotiamine (a water and fat soluble form of thiamine, a B-vitamin), try 300mg. Acetyl-l-carnitine and Co-enzyme Q (better when used together than separately). Methylcobalamin (a specific form of B-12, taken underneath the tongue, 1-3g/d). Omega-3 fatty acids -- used tremendously by every nerve cell. Vitamin D.

Those are the ones I'm working with right now. Additionally, I've read that Lion's Mane mushroom can cause your body to produce nerve growth hormone, as can Retinoic acid. And that Citicoline (also known as CDP-Choline) is also very useful to nerve cells. As is N-acetyl-cysteine.

That's what I know to look at so far. As you do your own research, consider that your nerve damage may be due to "entrapment"--this is significant since some therapies are more specific to entrapment than to disease. (Come to think of it, taking acetyl-l-carnitine and co-enzymeQ might be less important for you since those are more important for mitochondria, the cell's energy producer, a part of the cell that's more stressed in nerve disease.) I've gotten some of my ideas off of a forum populated by some "life extension" people. Perhaps a Naturopath or a doctor focused on a "life extension" practice could help you develop a supplement therapy that could help with nerve regeneration.

My neurologist is a professor at the local medical university, but is pretty open to alternative therapies. I've tried acupuncture--didn't help me, but maybe there's an acupuncturist with some ideas for you. A friend with some Ayurveda training came up with my yoga routine, and with sesame oil massage, and that seems to help--maybe there's an Ayurvedic doctor around who might have some ideas. Chinese herbal medicine is pretty advanced I guess, haven't gone there yet. Unless you have the priapism problem solved, make sure they focus on a nerve problem (as opposed to a 'sex' problem).

Nerve regeneration can take a while, be patient. Good luck.

I must thank you for the info and I am pleased to see that you have found so many nutritional treatments, etc. that could be good options for my situation. I have had some recovery of function since my question at start of this thread. Not much, but I have regained some foreskin sensation and the pain and swelling is less severe. I also have managed a few orgasms but they are usually faint to mild compared to what I remember getting a few years ago. The priapism has issue has waxed and wained as time progressed but of all ridiculous things to do, I now am on a prescription that carries priapism as a known side effect. So far no major priapism spell since taking it and I really wouldn't care all that much if it did! I guess I would seek treatment if the prescription does trigger a bad priapismic episode. I'm just not facing much more to loose because I really don't have much left to loose. I have seen my hope of sexual satisfaction leave and doubt that it will return. I keep learning that nerves take so long to regenerate and that is longer than my past priapismic episodes have been apart from each other. But besides all that my life is looking pretty fair compared to many, so I am also thankful.