Would appreciate your advice on what to do next!

[Nick0809]

Hello,

This is my first post. I believe I may have pudendal neuralgia and would appreciate some thoughts on next steps…

My problems began 2 months ago when I started exercising. Day one, I started with ab crunches then moved to a treadmill for jogging. After ab crunches, my penis felt numb. The numbness continued for a few days. (A few years earlier when I worked out regularly, I would occasionally go numb in the groin during and after working out but this usually resolved within a day.) After google searches, I couldn’t find anything that suggested jogging would cause penile numbness or damage so I resumed treadmill jogging. The numbness eventually resolved and I had normal erections.

Two weeks later, I went skiing and after taking a break in the lodge, slipped, fell, and landed hard on my right side when exiting the ski lodge. I seemed to be okay after the fall. Three days later, I went jogging outside (not on a treadmill this time) in the cold for about 30 minutes. After jogging, my penis felt numb and my glans became very sensitive and irritated.

Over the next two weeks, I experienced groin numbness and glans sensitivity and irritation exacerbated by sitting or walking briskly as my penis would feel chafed. Prolonged sitting caused my penis to shrink to a child like size. I also felt a mild pinching on the bottom of my penis towards the scrotum. Standing generally brought relief. I stumbled upon this website and learned about PNE and stopped all exercise.

About a month ago, I saw a local urologist who ruled out prostatitis and agreed my symptoms might be PNE related. He sent me for a CT scan which ruled out tumors, etc. He then sent me to a local neurologist who didn’t know anything about PNE but sent me for a lumbar sacral MRI which came back unremarkable.

Over the last month I’ve become increasingly diligent at avoiding sitting. This is difficult since I work in an office. I am usually able to sit at my desk on a large U-shaped foam cushion throughout the morning, but by the afternoon I must stand due to numbness/irritation. My symptoms have stabilized. I don’t feel much pain or pinching, but my glans is still VERY sensitive/irritated, and my testicles/scrotum feel tingly, like a tickling sensation, and my penis feels numb after sitting. The tingly feeling also radiates to my lower back on the left and right sides. My erections aren’t as hard and cause some pain especially when they form or retract. Morning wood is occasionally painful and causes me to wake up. I have experienced some ED and at this point, I think it is a combination of possible PNE and psychological since I am focused on “it.”

I don’t have any rectal/anal pain or incontinence, so I think any problems I have may be in the Alcock’s canal as only the dorsal nerve of the penis and perineal nerves pass through this canal and not the anal nerve.

It’s only been 2 months since my initial numbness but my fear is that I will get major, irreversible ED as if having to avoid sitting isn’t bad enough! My heart goes out to the many people on this site with worse symptoms, however I am worried and would like to proactively do something about my condition before it worsens.

Are my symptoms consistent with anyone else’s PNE experience?
Think it is time for me to try to get an appointment with an expert such as Dr. Hibner or Dr. Renney or should I give this some more time to see if it self resolves?
Would it make sense to try to get a 3T MRI with Dr. Potter before consulting with one of the experts?
I may want to have children one day, does Dr. Hibner or Dr. Renney perform non-CT guided nerve blocks? I don’t like the idea of the extra radiation from CT if avoidable.

Thanks for reading my long story, I would greatly appreciate your suggestions on what I should do next.

[Violet M]

Hi Nick,

Have you thought about giving physical therapy from a PNE therapist a try before heading off to one of the surgeons?

If you don't mind traveling, Dr. Sheldon Jordan in Santa Monica and some docs in Toronto give nerves blocks using ultrasound image guidance -- no radiation.

Violet

[Nick0809]

Hi Violet,

Thanks for your reply. I have thought about PT and like the idea of trying it. There is a PT trained in PN treatment not too far from my location. My concern is, if the specific cause of my PNE symptoms is unknown, perhaps PT could make my condition worse? Do you think it make sense to attempt PT before having an advanced MRI?

Thanks,
Nick

[Violet M]

Nick, once in a blue moon someone reports getting worse from PT but if you go to someone who knows what they are doing it's pretty unusual to get permanently worse. Whether you try PT or wait for the MRI is really a personal decision based on how long you are willing to wait.

Take care,

Violet

[carolynm]

If you tell us where you are located, we may have more suggestions for you. I'm in Colorado and there is a pain doc in Denver who will do ultrasound-guided PN blocks.

cm

[Violet M]

cm -- what's this doc's name? Could we find out if he wants to be listed on our site? Thanks,

Violet

[carolynm]

I'm sure he wouldn't mind.

Dr. Ron Hanson
http://www.centenoschultz.com/


cm

[Violet M]

Thanks!