Health Organization for Pudendal Education

Hello all,
My name is mike and I could use some help/opinions.
I'm a 42 yo MD who has been biking a lot for commute/ stress relief since turning 40. 2 months ago while riding I felt a sharp pain in the penis and it has been downhill since. I could have written the nantes criteria before I read them (except for the block response). I have pain with urination, slow urination, golf ball feeling/ ache, better on toilet or standing (although standing is no picnic for long) and numbness and clothes rubbing hypersensitivity.
Treated for prostatitis, normal urinalysis x 4, normal MRI of thoracic, lumbar, pelvis.
Seen 2 physical therapists who gave stretches which seem to make me miserable a few hours later. I'm off work, can't help my family at all right now and generally as depressed as most with this must be. Hell, I'm an md with a few connections in this town and can't find anyone who knows much about this. (Seattle by the way). I don't see too many bikers on this site and wonder if there are any out there with happier news than I see from so many folks with this misery.
Also
Sounds like early treatment helps but I should avoid surgery for as long as possible? Those two seem at odds. Seems blocks don't work but either avoidance of sitting/bending might but you don't know for a long time or surgery. But if you wait a long time surgery may be less effective.
Anyhoo, at 2 months duration (and only 2 weeks off work so far with sitting avoidance) should I try to get to Houston or Phoenix or California for an opinion or just lie down and eat neurontin and go to pt for 6 months?
Ps I am a doc but my knowledge in this area is zilch!!
Thank you in advance, mike

Dr. Jason Attaman is PN aware in Seattle. You need to get your pain under control and practice hyperavoidance. Start the SS disability process. We can only learn how to best manage this condition. SUrgical results are not promising.

Best,

Cari

Welcome Mike,
Don't feel bad about being a doc with zilch knowledge beacause sadly you have lots of company. I would go to a PN aware PT to see what they find and if they can help since you are early in the process and pain. Getting meds for the pain such as neurontin, or amitriptylene and/or cymabalta or Lyrica. See the faqs off the home page for the above and all other steps to take. Certainly the local dr that Carolyn mentioned would also be a good step and her other advice. The early treatment would be the PT to see if that knocks it out and yes surgery is a tough choice. Basically they tell you they have redefined success to be any improvement not that the pain will be gone. I am a surgery person due to having pain increasing, less able to work, already have chronic foot pain from bunions and relied on sitting to offset that. I saw myself headimg to pain level 10 24/7 and running out of time off from work/ losing my job if I did not do something. I had surgery May 2011 and did get improvement butthe pain is not gone, however they say nerve recovery can take 2-3 years or more so there may still be hope. I was done to working 4 5-hour days a week taking wedsoff for a break pre-surgery and now I can work 5 days with some at 8 hours, using Family Leave Medical Act for Leave Without Pay to cover time off when not up to working the full day or other tratment PT , acupuncture, etc. Oh yeah the gabapentin and other meds are anti depressants so that helps a bit with the as you say obvious delression. Good luck with finding a treatment and hang in there you now have the whole forum to help and support you. As I say keep asking questions and generally some one here has an answer.
Janet
.

First, I just want to say that it is so nice of Janet to welcome newcomers to the forum. She was the first to welcome me, and I felt less alone immediately. Thanks

Also, I second everything she said about meds and PT. I recommend the Lyrica/Cymbalta combo. Surgery seems to have worked better for some than others, but have a good work-up with a PN aware PT and eventually a PN aware doctor before you think too much about surgery. You said you had an MRI of your pelvis, was it a 3T MRI? The pudendal nerve cannot be seen very well on lower strength MRIs, so it might help for you to get a 3T one using the Potter protocol. This might give you a better idea of what is going on. Blocks don't seem to be a solution, but they are good for diagnostics. I definitely recommend that you start sitting avoidance as much as you can, it seems to help.

Just some thoughts. I'm not a cyclist, but I have improved over the past 6 months with mostly conservative measures and I'm working towards resolving my pain. So, there is hope, even when it doesn't always feel like it. Everyone here is very helpful, feel free to ask anything.

Hugs and welcome, Jackie

I am one of the folks who DID get significant relief from PT and all the benefit i got was quite rapid; plus I was never exacerbated from PT. In my observation a lot of folks are exacerbated by PT initially and are told "stick with it and it will work eventually", and it never does. I really would NOT spend 6 months on PT.
My understanding on cycling as a factor in PN is that it irritates the nerve in the area of Alcock's canal and may cause scarring there. If you stop the cycling and do a course of rest / minimal sitting /conservative treatment / maybe a nerve block, that might help the nerve if it has been irritated but is not entrapped in scar tissue. However in my experience, it is worth investigating the possibility of surgical decompression WHILE you are undergoing conservative treatment. The reason is that it tends to take a very long time to go through the process of investigating which surgeon you want to see, getting to an initial consultation with the surgeon, determining you are a candidate for surgery, getting insurance approval, and finally waiting for an open surgical date. I had surgery for tarlov cysts; and it took a full TWO YEARS to get from the point the problem was first identified to the point when I went under the knife. Within that two year period I experienced some further neuro deterioration and developed new symptoms I am still recovering from / never would have developed with prompt treatment.

Thanks all for the quick responses! I do have an appointment with Dr Attaman in a few weeks and hope that will be helpful. I found kathe Wallace from this site for pt and have had one session. Found her excellent and hope we can start getting me up (or actually sitting DOWN) again someday. I am thinking headache in the pelvis and maybe adding a tricyclic will be the next steps. Serenity now!! Sheesh.
Thank you again.

Hi Mike,
They are good this lot aren't they (and SO nice)
The only thing I would add is that because you had no actual noticeable trauma as causal agent, the prognosis of a good solution with conservative treatments is much greater. I hope this will be the case for you, while I do take Cari's point about a build up with scar tissue due to cycling.
I know Trimaverik on this site (Hi Tri), has gone to great lengths to look at bike seats to help his condition although my advise would always be to stop cycling, OK and sitting, and You do have company on here in the biking fraternity.
I love that term 'causal agent'. I read it in some medical paper a while back. Is it mainly used in medical terminology? Being slightly dyslexic, I read it as casual agent and though OH COOL! It didn't make one bit of sense in that context of course but I much prefer that stylish association
Take care,
Helen