Health Organization for Pudendal Education

Hey everyone, for the past 9 months I've been dealing with many symptoms. They started out very mild with just moderately frequent urination. Every 2-3 hours maybe. I didn't think anything of it at first. But then around September of 2011they got real bad. This seems to all correlate with a new mt bike I had built during the summer. The new saddle was applying pressure on the pudendal nerve and the last time I rode I made a mental note to adjust the before I go out next time. Two years prior to that summer I had a mt bike accident where my pedal hit a rock and my body flew forward with my pudendal nerve hitting a sharp metal part of the bike (the stem for all you bikers). Urination seemed slightly affected afterwards but nothing alarming. I thought there were going to be major problems and when nothing really happened I figured I got lucky.

But over the past 9 months I've been experiencing burning pain at the tip of my urethra, most days a constant urge to urinate even after I've gone, a tense/inflamed/aching feeling in my penis, burning during urination, no more random erections, no more morning erections, sometimes my penis feels cold. I'm usually pain free when I wake up but usually after my first urination the pain begins for the day. I haven't had a normal urge to urinate since this all started. I don't even remember anymore what that feels like. When I wake up I don't have that strong urge to go. I get angry because I'm a young guy who loved mt biking and feel guilty in a sense because I built this bike and if I'd have chosen a different saddle or changed the geometry none of this would be happening. Now I may not ever be able to ride again. School is really difficult now too and I never go out anymore. My urologist was of no help either. Despite me telling him all these symptoms and asking if it could be pudendal issues he was set on prostate issues without even giving it any thought. I've tried a few medications to no avail.

Sorry about making this so long but can anyone lead me in the right direction? Is there any hope, can it eventually go away? Does this even sound like it's PN? There were no doctors listed for my state on this site but a neurologist is what I would want to seek out right?

Thanks a lot

Hi DW,

Sorry to hear about your symptoms.
I am a newbie here too and still trying to research as much as I can from our friends.
Does sitting make your symptom worse? This is a common denominator for all PNE'rs.
Just like what other members said, it is a diagnosis of exclusion.
Since you have already seen a urologist and it made no difference, consider moving on to another specialist.
A sports medical doctor, a neurologist, or a well experienced PT can be your next option.
Not all doctors are aware of this diesease entity and sometimes you have to educate them as you know your self and symptoms more.
Sad to say, most of them are limited to treat what only their specialties can diagnose and PN is just about to start to become more common.
You are on the right track my friend looking for the right answer and do not stop until you are convinced with what is causing your problem.
You might want to read or print out this link: http://www.pudendalhope.info/node/8
Bring it with you and help your doctor by educating him/her. Will be hard but it's worth the try.

It is normal initial reaction for us to feel so secluded because we tend to be different from the normal population - you are not alone and you can always approach members of this site for enlightenment.

Hope you will find the answers soon and also good luck with school.
Hope it doesn't affect your studies.

God bless

DokEds

Welcome Drew,
Some good info came your way and I would second a PT as long as they have PN knowledge, hopefully one is listed for your state or let us know what state and maybe someone can give you a reference. Check the list of symptoms to see how you match up but I am guessing your accident could be the cause and yes you may not want to ride again. You said you tried some medication but there may be others in the list tgat you have not tried and everyone is different and it sometimes takes trial & error until one works: amitriptylene, gabapentin/neurontin, Lyrica, and Cymbalta that are for nerve pain and regular painkillers like tramadol and oxycodone. The faqs on the home page have a wealth of info to help lifestyle changes, etc. Good Luck
Janet