Can anyone help me figure out what is going on?

[wahoo]

Hello All-

This website has been very helpful to me and I wanted to thank members who have posted.  

I am 45 and my nightmare started about 9 months ago.  I had a nasty concussion about 2.5 years ago and suffered post concussion syndrome.  Luckily after a period of 9 months most of my issues resolved except some sleep issues.  My primary care physician prescribed trazadone for sleep (about 9 months ago) and I took a tryptophan supplement.  My sleep was great but a side effect was long lasting erections at night.  I stopped after about 3 weeks because of pain in my penis during the day.  The long painful erections continued at night even after stopping the trazadone and continue to this day.  They are strange erections too, partially inflated with glans sometimes not inflated and not related to anything sexual.  My penis now feels rubbery and hard on the inside when flaccid 24/7.  Exercise of any type causes throbbing pain and a chain reaction of long erections during the night and several days of pain afterwords.  Luckily I can still get an erection for sex but the sensation has been vastly reduced.  

I have been to a urologist several times at the Cleveland Clinic who chalked this up as anxiety.  They did refer me to pelvic floor therapy which I attended for multiple session.  They did trigger point therapy but my hard flaccid never left during therapy.  The doctor did prescribe a rigiscan device to measure erections at night.  I wore it 3 nights but didn't have any of the long term erections that cause me pain for a number of days afterword while wearing it.  He said everything is 'fine'.  He did rule out Peyronies as well.  To me this sounds like priapism but it wasn't recorded when I was wearing the device.

I am in pain most days and everything is not 'fine'.  On the worst days I can feel pain in my abdomin and numbness down the backs of my legs.   Sitting for any period is uncomfortable.  I cannot do even mild exercise (walking) without pain in my penis and a chain reaction of long erections at night.  My penis is close to 1" shorter flaccid than before this started and is shorter when erect.

Can anyone help me figure out what in the world is going on?  I realize that this forum is for Peyronies but I am getting desperate at this point.  This situation has been devastating to me.  I was active hitting the gym 3-4 times a week.  Now I'm reduced to being inactive and in pain most days.  Exercise is definitely a trigger for the chain of events that cause irritation in my penis and then the long term erections at night.

For what its worth I have been on a low inflammation diet the last 2 weeks.  It seemed to be helping until my most recent flair up this week.  

I thank you sincerely for reading this post and would appreciate any feedback you may have.

Wahoo

[anonpdacct]

Wahoo,

Have you received an ultrasound to rule out or confirm peyronies plaque (scar tissue)?  Some of what you're describing sounds like it could be peyronies - i.e. pain and reduced erect length - but it's tough to say for sure.  I think an ultrasound would be a good a next step.  Hopefully you can rule out peyronies and then focus on finding the cause for your other symptoms.

If you need help finding a good peyronies specialist who will perform an ultrasound, let us know where you live and maybe someone can suggest a specialist.

I'm sorry for your troubles.  Sincerely,

Anon

ps. Regarding pelvic pain, I would read the book "A Headache in the Pelvis."  If that sounds consistent with what you're going through, I suggest a consult with Dr. Wise and the folks at his clinic.  But I do think it's important to get that ultrasound so if I were you, that's where I'd start.

[wahoo]

Hi Anon,

Thanks for replying.  I have not had an ultrasound done but based on your experience it sounds like I should.  I live in Ohio and am not too far away from the Cleveland Clinic which is why I visited their Urology department (4 times over six months).  My complaints were falling on deaf ears... to the point I even brought my girlfriend along on the last visit.  The doctor their did not recommend an ultrasound for whatever reason but I think that is my next step.

Thanks again, Wahoo

[anonpdacct]

If I lived in Ohio I would fly (or drive) to Chicago to see Dr. Laurence Levine.  He's one of the top guys for peyronies.  He'll definitely do an ultrasound.  But you should convey to him or anyone else the medications you're on and the effect you think they're having on persistent night-time erections and ensuing pain.  This information may change whether the ultrasound is done flaccid or with an induced erection via injection.

No need to thank me.  We're all in this together.  Good luck.

Anon

[james1947]

wahoo

Listen to Anon advice and see Dr. Levine as soon as you can

James

[wahoo]

Thanks James and Anon.

I think a trip to see Dr. Levine in Chicago is going to be in my near future.  I'll keep you posted.  Has anyone else on the forum experienced pelvic pain like Anon mentioned?  Can that cause your penis to hurt and 'turtle' 24/7 and cause your penis to hurt after exercise?

By the way the book "A Headache in the Pelvis" sounds interesting and I will be ordering on Amazon.

Wahoo