Newcomer, my situation.

[brad2481]

Hello everybody, I am a 22 year old male and have had a very rough 6 months. Everything started after an erection where penis started to spasm... I eventually lost all sensation from the point of the spasm in my penis down, I'm almost completely numb and I cannot sense temperature from my penis to my anus but can feel when i pinch something hard. I have had a barrage of neurological testing and have found nothing except a blood abnormality that may or may not represent an "M Protein". I also have frequent diarrhea. I have had brain,cervical,lumbar,thoracic, and lumbo scaral mri's. Tomorrow I am getting a pelvic mri. I had pain for 3 months and could barely sit down without pain for that duration, now it has progressed to numbness. I hope the pelvic mri will show some sort of abnormality. Also sexual function is very diminished as I am numb and can barely reach ejaculation and I have an hour glass shape in mid erection. I cannot get an erection from mental stimulation alone. Nocturnal erections are weak. This was all caused by the spasm which is either a nerve irritation along the pudendal tract or a blood condition causing my penis not to drain properly and causing sensory damage. Ive seen multiple urologists who say my penis looks normal but tomorrow marks the first day i will actually have an internal look at it. ----- Anyone with similar problems can feel free to message me.... I know these conditions make life unbearable at times and having people in the same situation there to talk to helps alot. Look forward to meeting you all.

[janetm2]

Welcome Brad,
So sorry you are having a difficult time. I know you are not alone as other men have posted similar numbing issues. Maybe they can help or one of the women who know so much about the various issues. Hang in there. Some of the usual starting ideas besides the MRI are to see a PN aware Physical therapist to see if there is something with muscles to fix. Another is looking into medicines for pain although it sounds like the numbness may be less painful with little or no feeling? I mostly wanted to just welcome you and wish you well. The faqs off the homepage have a good deal of info. Take care
Janet

[brad2481]

Thank you Janet, I have been to a pelvic floor therapist who found no trigger points so I'm guessing whatever damage has been done has leveled off. All my muscles work properly its just numbed sensation along the pudendal nerve tract. I'm wondering if maybe I suffered a mild priapism which could have led to penile fibrosis over time... either way, I should have more answers tomorrow. I have many reputable doctors at my disposal however none of them can pin point the problem. After the penile mri and maybe penile doppler... I plan to head to the Mayo Clinic or John Hopkins to find someone good in sensory nerve regeneration.

[flyer28]

Hallo Brad
thats definitely sounds pudendal neuropathy related. at least I am almost sure that 3T MRI will show some pathology. This tool is quite sophisticated to reveal any abnormality if the radiologist is able to read it. Complete numbness is nerve related, no doubt about it. Another useful tool might be penile duplex ultrasound, useful more for vascular issues. Is there any laterality in your problems? (left or right side is worse?). Muscle spasms I consider secondary, logical reaction of pelvic floor in that situation.
Wishing you all the best in this enourmously tough struggle, there are surely better days ahead of you, keep strong.
Flyer28

[brad2481]

Both sides are just as bad.. Ive found that the quality of my erections have diminished progressively since the onest... and at this point I can only have a 70% erection at best for a few moments. I meet with my nuerologist today and I will discuss with him a 3T MRI ... not sure what I am having done today. I am also working on getting the ultrasound as well... but today will just be a pelvic mri which will at least tell me if theres fibrosis in my penis which most likely indicate I had priapism. Hoping to get to the bottom of this soon as many reputable doctors seem to be near useless in figuring this out.

[brad2481]

And I don't have complete numbness of my penis, it's only from the point where it spasmed down. So maybe the top eighth of the shaft and the head are ok.

[flyer28]

that s strange that your glans is completely ok and shaft is numb
I have somewhat similar symptoms, my glans is also completely ok, no numbness, no pain absoluetyl ok
on the other hand, the shaft (mainly that part attaching the body) is very painful.
also have some suspections on injured dorsal nerve with some repetitive stress injury (sex/masturbation), right side is significantly worse
when I have a flare-up I got feeling that the epicentre of the pain is not in penis, but somehow beside penis, inside the body (more right then left). This is also feeling how it all begann: two or three days after prolonged sex I had vigorous pain "behind" the penis, inside the body, on the right side
firstly I suspected epidithimis, than I realized that this is exacly the point where is tight dorsal canal - one of the places where the nerv might be entrapped-
of course that urologist said no no it is prostatitis, epiditimis etc. but the pain was more nerv related - for example of the fact that pain never came immediately, but 2-3 days later - this is one of the hallmarks of nerve related pain.
then dr. Aszmann found out some scars in my right dorsal canal but I still trying to find conservative ways how to cope with it, dorsal nerve decompressions are pretty risky business

[brad2481]

I've been working with a very good neurologist at the Cleveland Clinic and he emphasizes how crazy a nerve injury can be because one irritation can cause a giant ripple effect along the rest of the nerve... much like how people with carpal tunnel have complete arm pain sometimes and I'm thinking that is sort of what happened in my case. He says sometimes people have these injuries and they take 6 months to a year to fix themselves. I'll probably end up waiting it out if this most recent MRI doesn't show anything... not really sure how much more I can do. He gave me a referral to another neuro there who has pudendal experience. I also asked about the 3T MRI today and he said those have potential to create false positives.

[Richard1969]

Hi Brad-

First, thank you for sharing your story. I too have spent time @ the Cleveland Clinic. Dr. Daniel Schoskes who is a uro that specializes in prostatititis and prostatitis related ailments. He refered me to a Dr. In Michigan (my home state) who believes I have Pudendal Neuralgia. I have had three injections on both sides of my bumm. The majority of my symptoms are:

Pain in urethera and tip of penis
Hypersensitivity to my glans
Pain in my coccyx when sitting on hard surfaces

I'd be interested in sharing stories. I have my fourth nerve block on 10/08/2013. My injections this time will be at the dorsal nerve which is generally the area OD the pudendal nerve that affects the penis, urethera, and glans. The second injection is going to be at the coccyx to hopefully reduce any problems at the S2, S3, S4.

[flyer28]

Hallo Richard
if I might ask you, what was the outcome of your dorsal nerve block? any impact on your pain?
I had dorsal nerve block in June 2012 , made by ulatrsound guidance, with no result. (But I dont have pain in uretra and glans, all the pain is in shaft)
Flyer28