My Xiaflex Journey

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TDix

New member here!  Starting Xiaflex treatment next week for a 30 degree curve to the left.  Will keep you updated on results
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

james1947

Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

TDix

Getting really anxious as the days count down...never thought I'd have to have injections down there at this age
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Dr. Barton Wachs, he did my vasectomy back in 2002
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

First shot done.  No numbing shot, and it wasn't too bad.  Have a pretty large piece of plaque according to dr.  Targeted one side of it today, and will target the other side on Friday.  Wrapped up and feeling OK.  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

swollen and bruised at the moment....
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

wondering how long I should leave the wrap on..the one the dr did was fine, but a little of the foreskin was outside the wrap and filled with blood....painful blood blister, so I rewrapped it.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

betterbend

I was told to leave it on for 24 hours if I could.  However, if it was uncomfortable, or starting falling off then I was told to just remove it and dont bother to re-wrap.  Most of the time I had it on for 16-20 hours.  Only one time I removed it in the middle of the night.  I swelled up behind the wrap.  It was the exposed portion of my penis between my body and where the wrap started.  It swelled a lot and was digging into the wrap.  It left a mark for weeks and was sore ...
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

JohnR

50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...ED issues, major anxiety issues now.

TDix

Dr Wachs wanted to see me again to make sure nothing was going wrong.  Drained the blood blister, and pushed back next injection to Monday.  Says the swelling and bruising look good.  Nothing like another poke to the peter.  Wrapped again for today for the drained blister
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Also,  what I've found reduces my discomfort tremendously is using a jock strap.  Did the same when I got my vasectomy, and it is ALOT more comfortable when walking around/sitting.  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Perceptible Curve

I wish you luck Travidixon. Also wish I could give you some insight as to what to expect and add to the discussion. But I havn't had the shot yet myself, so I am thankful for any and all that guys like you that take the time to type your experiences in this forum.  
Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

JohnR

Go back up and read the link I sent.
50 year old, onset in Feb. '18, diagnosed in Mar '18, 4 rounds of Xiaflex completed, little improvement, mentally overwhelmed...ED issues, major anxiety issues now.

TDix

second shot of first round done.  Dr was able to get deeper into the plaque than the first shot, and man did that hurt, but he said it's a good sign, as the plaque seems to be "giving" more than last week.  Wrapped again, and hoping the swelling and bruising aren't as bad this time.  2nd round in 6 weeks
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

lmn25

Hey Trav - thanks for sharing your experience. I just started a thread with my own since my first shot of round 1 was done yesterday. So far my biggest concern is that I did not wake up with painful morning wood like others here have mentioned. Instead, I was only semi-hard and it seemed to go down quickly. I'm not sure if I should be alarmed that I didn't have a strong, painful erection, especially since I took 2.5 mg of Cialis before bedtime. Did you wake up with a painful morning erection after the first shot? Thanks!

-L
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age, date of onset, symptoms, treatments tried,
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TDix

I usually have morning erections.  After both shots I would say they weren't so much painful as much as just sore due to bruising.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

lmn25

Thanks Trav, appreciate you sharing your experience!
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
*** You will waste less time in both providing and getting answers ***

lmn25

Hey Trav (and anyone else reading), how are you doing post Cycle 1? Are you doing any traction with your treatment in addition to the stretches?

I just had my 2nd injection of Cycle 1 today. I had been told this injection would hurt worse than the first, and it definitely did, but I managed and I'm hoping it means he was able to really get into the plaque. I'm currently wrapped up, but I did just have a knife-like shooting pain that was really unbearable for a few seconds -- didn't get anything like that with the first injection, so not sure what to make of that.

How soon after the second injection do people start the stretching exercises? I know it probably varies depending on bruising/pain, but I'd like to get started as soon as possible to take advantage of the medication. I'm just a little bit concerned about trying anything today with that stinging pain I just experienced. Hoping I can start tomorrow.

-L
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
age, date of onset, symptoms, treatments tried,
relationship status, etc
*** You will waste less time in both providing and getting answers ***

TDix

I am doing good after first round.  Bruising almost gone after 1 week, and started modeling over the weekend.  Not going to do traction just yet.  Still very worried something may rupture down there, but am open to traction down the road if need be.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

betterbend

I started hand stretching (gently) 3 days after, and traction 7 days after my second injection
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

TDix

So I've been modeling for a week now, and have noticed my plaque hasn't really changed much after the first round, and is the only sore area.  Anyone else notice that?
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Perceptible Curve

Quote from: Travdixon on August 14, 2018, 01:27:32 AM
I am doing good after first round.  Bruising almost gone after 1 week, and started modeling over the weekend.  
I'm in agreement with you Trav. Doctor gave me a double dose in one sitting may make it even easier to rupture, been modeling by hand though. Good luck through the rest of your treatments.
Age: 54.
Onset of Peyronies ~16 years ago.
~45 Degree bend upwards and a bit to the left.
Completed all cycles of Xiaflex as of April 2019. Slight improvement from Xiaflex and now had a Penile Prothesis implanted Sept 9th 2019.

TDix

Still modeling daily.  Guess there is a small change in bend but nothing drastic.  Dent on side a little more pronounced and still sore when erect.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

continuing to have soreness in the plaque area.  Haven't had any intimacy yet.  Modeling when not sore, but no real significant changes noticed.  I have noticed the dent on the left side seems a bit more pronounced, so I am planning on having Dr Wachs focus on that area for the 2nd round.  Not looking forward to it though.  Having a bruised and swollen penis is definitely not fun.  Hoping for some results after the next round.  Sometimes I feel I am just going to have to live with the curve.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

betterbend

Trav.. are you using traction also or just hand modeling?
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

TDix

Starting second round on Monday.  I will say first round did not do much of anything other than make the dent on my left side more pronounced.  Hoping I see SOMETHING with this round
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

So just got first shot of round 2.  Discussed how nothing really happened with round 1, and after feeling the extent of my plaque, the dreaded surgery word came up.  We are going to see if this round and one more do anything, but after that if no real progress he recommends surgery to go in and remove my plaque.  It's a large piece of plaque that he said is really unique, and said the surgery wouldn't really go after the scar, but the large amount of plaque I have.  Said it's a relatively easy procedure, but I'm still scared as hell.  Not the news I was hoping for
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Experiencing really sharp pains from injection site this time around too.  Maybe because he really got inside the plaque.  He was determined to get as much of the medicine directly in, and with the plaque being so tough it hurt like a mother.  Hope these sharp pains go away
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

betterbend

Keep it wrapped for as long as you can (up to 24 hours).  Also try some cold packs, not full-on ice.  Advil helps... Good luck
55 - Onset May 2017.  38 degree bend up.  Failed Xiaflex treatment.  Still functional so I decided to stop treatments.  Only take 400mg Co-Q10 and occasionally use Restorex

Pfract

Hey Trav.  A lot of guys try various cycles before they call it quits. Why not do the same here?

TDix

I'm still doing rounds two and three to see if it does anything.  Currently in a lot of pain as he went deep into the plaque today, and I've blistered up again.  Currently wrapped and scared to unwrap until tomorrow.  I know it's gonna be ugly.  The pain is literally like sharp pinpricks that build in intensity and then go away, mainly while standing.  Urinated and I'm so swollen at the tip it was not a pleasant release.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Nice sized hematoma on the side of glans.  Not happy
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Hematoma today is absolutely huge.  Waiting for dr to call me back.  I'm about done with this s**t.  Why am I putting myself through all this????
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Currently in ER.  And of course no one has heard or Peyronies or Xiaflex.  Good thing is dr is across the street and will be over to see me
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Dr came and drained hematoma.  No fracture....put off second injection for another week.  Again, surgery came up
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Pfract

Holy!!! That's a bugger... Try to stay calm man, and ask around the board what is normal and not with xiaflex... good luck!  

TDix

Thanks pfract, if only I could've shown a picture.  This hematoma was hanging off the side of my glans 1/2 inch long and 1/4 inch wide.  I was seriously worried.  My blood pressure at check in was not good.  After I found out no fracture and dr comforted me that while unusual it was not serious my BP was normal.  The sight of numerous nurses and ER doctors looking at my junk in its absolutely worst state was just so overwhelming, let alone that none of them knew what to do.  "Xiaflex?  What's that?"  I was so downtrodden
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

I believe I may have wrapped too tight this round, and the shooting pain was the swelling trying to get out.  I feel my large hematoma on the glans was a result of this.  I'm almost at the point that excision surgery might be less traumatic, as every round of shot has produced some sort of complication in my case.  Dr has also said I now have more than one piece of plaque.  Not sure if my initial large piece split or I have produced additional spots of plaque.  If that's the case it completely goes counter productive to why I started this whole thing in the first place
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

I am going back to ER.  I think it fractured
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Waiting on ultrasound.  I know it fractured, and I will never forget the feeling.  Woke up with an erection, and all of a sudden it felt like a balloon popped inside, and then just immediate pain.  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

After ultrasound and it was not a fracture.  What happened was a vein burst under the skin.  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Looks like I'm one of those poster guys for when Xiaflex goes wrong.  No fracture but other than that it's been a very negative experience  
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

So 2 ER visits pretty much let the cat out of the bag to my family, and come to find out my younger brother has Peyronies as well.  Seems to be a genetic thing in my family.  He was thinking of Xiaflex but has been putting it off because he hates needles.  I don't think I'm going to be a glowing endorsement for him
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Scared to sleep tonight, definitely do not want a nocturnal erection right now.  May not sleep
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Woke up to an erection, freaked out and got up immediately as that usually takes it away pretty quick.  It was sore but nothing happened.  I remember yesterday I involuntarily tightened my Kegel muscles semi awake and that was when the vein burst, so I concentrated on not doing that again.  I guess if I look on what little bright side there is, it confirms I don't have a fracture.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Finally took a shower after yesterday's hospital scare, and got to unwrap and take a look.  Other than another hematoma, I'm surprised it isn't worse than it is.  Swollen and extremely bruised, but better than I expected.  I'm sure my dr will yet again drain the latest hematoma tomorrow, and barring anymore setbacks, I feel I'm back on the road to healing.  I will post how it goes at the office tomorrow, as we plan to discuss the reality of no more Xiaflex and possible surgery
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

Pfract

Oh man... You are going through so much! Are you sure you don't want to go to another more experienced doctor? Try to stay calm and be supportive to your brother... You guys should be tight on this. Keep me updated on this.  Fingers crossed you don't fracture your penis man. I know what that is.  

TDix

I'm comfortable with Dr Wachs, and he has over 40 years of experience.  He is friends with the Dr's mentioned here (Gorman I believe?) and is consulting with them this week.  He's done hundreds of Xiaflex shots, and is a well respected surgeon.  I just think I'm not responding well to Xiaflex.  In talking with my family I have found me and all 3 of my brothers have had genital issues since kids.  I had a double hernia, a brother had testicular torsion, another had other issues I can't remember, and of course one also has Peyronie's.  I wonder if those things play into what I'm dealing with now.
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

Last night I woke up at least 3 times with nocturnal erections, and each were extremely painful where the vein had burst.  Concentrated on no Kegel tightening, and was able to go back to sleep.  Not making for well rested nights
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

TDix

The Dr my Dr is consulting with is Dr Gelman I believe
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE