Health Organization for Pudendal Education

I lost anywhere from 40 to 80% of the sensation on one side of my penis about two years ago, in mid 20s.

Ive been to every kind of specialist i could think of and checked out ok, everything is spot on.
We found a herniated disk which we thought was causing it l5/s1 on the same side.
I had it operated on and it reherniated which we tried again. It didn't seem to do anything for the penile problem.

Recently Ive been having some sharp pains in the scrotum on the opposite side and have ruled out everything through the urologist. I am wondering if it is somehow related.

Lately Ive been sitting much more and numbness has gotten worse, more towards 80 or 90% numbness and it seems correlated to the scrotal pain.
What should I do next? Ive mentioned this to a couple urologists already and they said "you don't ride a bike so we arent worried about that"

I have never had pain in the right side where the numbness is other than some tingling.

Does anyone have any advice or hope for me? If it gets any worse, i am going to have some serious reproductive and quality of life issues.

Your symptoms do sound like PN. I am searching for hope as well. Just know you have found friends and we can all help each other through this journey. There are some outstanding, kind, intelligent people on this website who will offer more information that I can.

welcome to the group

cari

Hi There,
I agree your symptoms could very well be PN related especially because you say they are unilateral.
Have a look on the home pages, there is such a lot of information to help with diagnosis, finding physio's and doctors etc. I hope there is someone on the list who is local for you.
Advice would be, try not to sit, pace activities and maybe get advice on medication from your doctor. There is a letter to medical professionals that you can print out and take along that can often help, as many doctors are unaware of the condition either fully or at all.
Welcome and take care.
Helen

fak_Et wrote:I lost anywhere from 40 to 80% of the sensation on one side of my penis about two years ago, in mid 20s.

Ive been to every kind of specialist i could think of and checked out ok, everything is spot on.
We found a herniated disk which we thought was causing it l5/s1 on the same side.
I had it operated on and it reherniated which we tried again. It didn't seem to do anything for the penile problem.

Recently Ive been having some sharp pains in the scrotum on the opposite side and have ruled out everything through the urologist. I am wondering if it is somehow related.

Lately Ive been sitting much more and numbness has gotten worse, more towards 80 or 90% numbness and it seems correlated to the scrotal pain.
What should I do next? Ive mentioned this to a couple urologists already and they said "you don't ride a bike so we arent worried about that"

I have never had pain in the right side where the numbness is other than some tingling.

Does anyone have any advice or hope for me? If it gets any worse, i am going to have some serious reproductive and quality of life issues.

your urologists are ignorant regarding PN issues...bike riding is one of many reasons for these nerve problems

I have had severe genital numbness for 6 months now, and a took quite a bit to get a diagnosis..this forum was a big help

best of luck..keep in touch

I think the majority of us were not bike riders. It helps to get into the mindset that any change in sensation can be a neuropathy, so the numbness and the new pain you are having are equivalent in terms of significance. The fact that the scrotal pain is on the opposite side is not surprising, because the structures of the pelvis have very complex relationships with one another and hence a single problem within the pelvis seems to often cause others, kind of like dominoes falling. It is also typical for a general - practice Urologist to come up with nothing abnormal.
On the main menu of the HOPE home page are "find a Doctor" and "find a PT" links, which can help you locate a practitioner with more knowledge of chronic pelvic pain syndromes. Meanwhile definitely avoid activity that exacerbates your symptoms: If the extra sitting is necessary for a job there are cushions and alternative chairs that take pressure off the pudendal nerve. There is a good discussion of alternative seating on this page of the HOPE site: http://www.pudendalhope.info/node/45 , and more on the forum under the category "seating and physical lifestyle adaptations".

HerMajesty wrote:I think the majority of us were not bike riders. It helps to get into the mindset that any change in sensation can be a neuropathy, so the numbness and the new pain you are having are equivalent in terms of significance. The fact that the scrotal pain is on the opposite side is not surprising, because the structures of the pelvis have very complex relationships with one another and hence a single problem within the pelvis seems to often cause others, kind of like dominoes falling. It is also typical for a general - practice Urologist to come up with nothing abnormal.
On the main menu of the HOPE home page are "find a Doctor" and "find a PT" links, which can help you locate a practitioner with more knowledge of chronic pelvic pain syndromes. Meanwhile definitely avoid activity that exacerbates your symptoms: If the extra sitting is necessary for a job there are cushions and alternative chairs that take pressure off the pudendal nerve. There is a good discussion of alternative seating on this page of the HOPE site: http://www.pudendalhope.info/node/45 , and more on the forum under the category "seating and physical lifestyle adaptations".

the link you provided for sitting show a concave seat cushion that looks like it would be great

where are those found..tried goodle search, no luck

thanks!