Post Xiaflex

[ecboy]

Hi,

It's been a while.  So I had a round of Xiaflex in April '15 with Dr. Lue.  I considered it a rousing a success.  Today, as far a the straightness goes, it is greatly improved where the injection was.  There may be some thickening around where the injection was, hard to tell.

Since June, I'm stuck with a return of the pain in my pelvis.  Generally above and to the left of my penis.  Some times there is a tingling or burning on the the left side of my penis and at the pelvis.  Sometimes the pain is alleviated with some light stretching for 5 to 10 seconds.  In July and August, the pelvic pain was severe enough that I was taking narcotics.  I was also experiencing what someone people call hard flaccid or hypertonic penis.

In August I tried Gabapentin for the pain and it was a miracle.  I felt near 100%, almost no pain and no hard flaccid, but it didn't last.  By October most of the pain was back and so was the hard flaccid.  Recommendations are that I see a neurologist which I'm waiting for an appointment.  I'm seeing a physical therapist who has high hopes and gives me hope.  I'm seeing a psychiatrist/counselor and that is meh.

Anything thoughts or suggestions from you guys for this?

Thanks again for your support.

[kuaka]

Hmm...  A physical therapist for penile pain.  Sounds almost fun.

Consider Magnesium supplementation...Chloride or Citrate.  Scar tissue is greatly lessened by it, and most of us are deficient.

[ecboy]

Hey kuaka,

It's not as much fun as you would think...  

Great minds think alike, I've been taking the Magnesium since October.

Thanks!

[Curvature15]

Hey,

Just saw this. So did you end up having just one round of Xiaflex?  Do you think the pain you're experiencing is from the Xiaflex?

I'm going to do round 3 with Xiaflex and Lue in Jan. No improvements yet.

[ecboy]

Hi Curvature15,

I did only have one round.  I had an upward bend in the middle of my penis and have a slight upward bend below the head and mild hourglassing at the base.  After before and after pics no more shots were recommended.

I don't *think* the pain is a direct result of the Xiaflex.  Before the Xiaflex I had similar pain in my pelvis and rarely had penile pain.  My main incentive for the Xiaflex was the possibility that the pain was caused by the plaque pressing on some nerves.  After the Xiaflex I had an improvement in my upward bend and a marked reduction in pain (after the injection pain subsided and the plaque broke up a bit).  That was April.  In June the pain returned.  I'm not sure what brought on the renewed pain.  The current thinking is that it is neuropathic pain, most of it seems behind my penis and pelvis and comes with a tight feeling in my penis on and off throughout the day.  Physical therapy seems to help.  Seeing a specialist for neuropathic pain has been hard to come by, still looking for one who is willing to take on the case.  They've all said see a urologist (duh) without ever seeing me.  I had see Dr. Lue and his colleagues recently and the is no manually detectable (aka palpable) plaque any longer.

Good luck!  May your results be awesome.