My Symptoms

[DrewWapner]

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 saddle 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erections, sometimes my penis feels cold, symptoms often worsen after a bowel movement, and for awhile my scrotum was retracted almost constantly especially when I was in pain. 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

[helenlegs 11]

Hi Drew and welcome,
It does sound as if you have some similar symptoms to a typical PN'er. . . . . did any tests for prostate and the urologist come back negative? I guess so or you wouldn't still be searching. You don't mention a problem with sitting which is a usual complaint however.
Having a burning sensation is a classic though, especially if the urology reports came back negative. Nerve pain can often masquerade as 'burning'
Take a look at the home pages and see your Dr with regard to medication recommended there. A combo of an anti depressant (like cymbalta) and anti seizure drug (Gabapentin/Neurontin or Lyrica) can be a help. It's a bit of an experiment getting the combination prescription that works(ish)
It's a shame that there is no one close who can help you specialist wise, I take it that you have looked at the list of PN aware Doctors on the home pages. . . not all neurologists are PN aware, in fact it seems to be just a few individual specialists who have taken up the pelvic nerve problem challenge from pain consultants to plastic surgeons.
Finding a local PN aware PT who can help is a good idea too.Again the home pages will help there too.
I'm sure others will chime in and offer advice.
Glad you found us
Take care,
Helen

[DrewWapner]

Hi Helen, thanks for the response. The only tests the urologist has done was a prostate exam and urine test every time I went in. My urne tests have always come back fine. For my prostate he would say "oh it seems a little spongy" or "it feels better". Not very scientific or conclusive in my opinion. He also had a ct scan done but I've read now that nerves don't really show up in ct scans. And like I said he didn't really pay attention when I brought up possible pudendal damage saying that bicycle saddles typically damage the urethra rather than the pudendal nerve. Seems to me when a man comes to a urologist they just target the prostate automatically. Now that I've tried a few meds to no avail he said "well where do we go from here?"

I actually forgot to mention that sitting down may aggravate it. I haven't noticed really, but when I'm standing or walking I usually feel better than sitting. When I have bad days, which is most days, there's nothing that brings relief. Not standing, walking or laying.

I took cymbalta for about 2 weeks back in November for back pain that happened to go away after some stretching so I stopped taking it. My primary would be willing to prescribe cymbalta and neurontin so I'll give that a shot if it'll help. I'll read up on the treatments on here. I've read about some getting nerve blocks or steroid shots so that's another possibility I guess.

Does this ever just go away on its own in some cases? I still get a little hopeful on days that aren't as bad.

[Violet M]

Hi Drew,

Yes, there's hope it will get better but it may or may not get better with just lifestyle changes -- depends on whether you have a nerve entrapment or just some irritation.

Your symptoms are very similar to what a lot of guys with PN experience. Since the bladder sphincter is innervated by the pudendal nerve, there's a possibility that an irritated or entrapped nerve is causing your urinary frequency.

If there are any physical therapists from our list who are not too far away from you, that might be your best bet for an initial diagnosis/evaluation. I was initially diagnosed by a knowledgeable PT when my docs had no clue. Based on their findings, then you could decide whether you want to travel to see a PN doc. You may also want to consider a special type of MRI. http://www.pudendalhope.info/forum/view ... =69&t=2490

I'm sorry this is happening to you. Since you are young and figured out a possible diagnosis fairly early that helps your chances for improvement.

Violet

[helenlegs 11]

Yes Drew, as Violet mentioned a knowledgeable PT could be the best way forward if there are no doctors near you who are PN aware.
A physiotherapist also diagnosed me, it's often the case. If you can get an evaluation from a good PT you could then take the results to your doctor and then he would hopefully realise ' where to go from here.'
let us know how you get on.
Take care,
Helen

[Redz]

Hi Drew.
I'm not a bike rider. I got PN from driving 11 hours a day but my symptoms of PN started the same exact way as yours burning at the tip of my penis. This was January 2012. I continued to work which made thing a lot worse. I have not worked in the last 4 months.

I do think you have hope. You had mentioned you do not have pain while sitting. That a great thing almost everyone I have read about including my self have difficulty with sitting or cannot sit at all. My penis pain is aggravated with sitting.

1. Stop doing what ever causes your pain. (I understand the urinating is pain ful and you can't stop that)I also would limit your sitting until you see the right doctors. Also drink alot of water we tend to get dehydrated due to it is so painful to urinate.

2. Find a doctor or PT ASAP that is PN aware

3. Get the Doctor Hollis Potter MRI in NYC of the pelvis. Best thing I ever did.

4. And here is some great news.I have had great relief from 3 ganglion impar injection. I just had my last injection in a series of three yesterday. Although it does not help with all the PN symptoms it has taken 99% of my urethra pain away and also allows me to sit as well. I would find a good pain management Doc in your area and ask about the injection. It has been a blessing for me.
Also where do you live?
Thank redz

[DrewWapner]

I just noticed the link to the list of PTs. I was looking at the list of doctors before. I have a few PTs in my area. If anyone from the Chicago area can recommend a good one feel free. I'll be setting up an appointment soon now. I feel the bike saddle is the culprit in which case I would think I somehow damaged the nerve. I wouldn't think that would cause an entrapment but I don't know. Sitting may aggravate it I can't really tell, but I do notice stress makes it unbearable. On bad days like I said nothing really helps. It's almost like if I urinate it brings a few minutes of relief if I'm lucky, but then the urge comes back. Today I've just had a constant urge without much pain. My family has been thinking of going to the Mayo Clinic or Johns Hopkins so maybe I can get it figured out by a PT here and they'll be fine with a trip to NYC to get the MRI done. This website will probably be the best help throughout this because this sounds like another disease that the medical community likes to shut their eyes to for whatever reason.

Thanks for all the help so far, feels like I finally found what the cause is. It only took nine months!

[Violet M]

From what I've heard -- Mayo Clinic is not the place to go for the treatment of PN. Before you head to John's Hopkins, I highly recommend that you get opinions from patients on this forum about the PNE specialist docs -- or read the stories of people who have been to them.

[DrewWapner]

Thanks for the heads up violet. Seems like a lot to go through on this site and I'm not quite sure where to start, so does anyone have any good initial advice aside from what redz said? Like medications or vitamins or anything else I should know. Should I start a vitamin regimen right now or avoid certain foods? Should I give the cymbalta a shot? Also are there any success stories, be it from surgery or just gradual healing on its own? Lotta questions...

[helenlegs 11]

It can be very overwhelming initially Drew, there is such a lot of information as you say. Don't worry too much, I think Red got it spot on, if you can't find a DR nearby go for PT as a first step.You never know you may find their targeted treatments are all that is required.
I would then still make an appointment with your own doctor and tell them about any PT's findings and mention PN if that has found to be significant.
I would advise some medication (see home pages) because you do have painful symptoms, again the Cymbalta you mentioned may again be all that is required.
Although It often works better for nerve pain with an anti epileptic like Neurontin/Gabapentin or Lyrica . If you do get a prescription,stage the introduction of the different drugs, say the Cymbalta first and monitor any improvement. Cymbalta can take a good while to have any effect. If you start both together you won't be able to determine which one is working or is it the combination that is helping.
The Attachment below indicates why this some drugs can work with neuro pain.(sorry more 'stuff')
There are many success stories, especially when the problem has occurred gradually like yours, rather than through a defining trauma incident. Many people don't report success stories as they are happily getting on with their lives so there are many more than actually reported on here. (home pages)
I did start taking vitamin B2 as it was reported helpful, but wasn't in my case. I do take omega3 capsules regularly but it's more of a general health thing tbh.
That's something to take into account though 'regularity', avoid constipation as that isn't conducive to PN.
There have been some interesting articles from this site http://www.pelvicpainrehab.com I am not promoting their services but there is a good lot on no nonsense info on here if you care to take a look.
Helen