My Xiaflex Journey

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TDix

Drained hematoma spots still very sensitive and bleeding.  Hydrogen peroxide, neosporin and wraps right now.  Switched to non stick gauze as they kept sticking.  Swelling looking better but still very sore and painful.  Thank god for pain meds right 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

Aahh to have my old original penis back.  Such is life I guess.  Happy I have a long term, understanding wife.  If I was single I would be a major wreck.  Still messed up, but knowing she loves me for me makes a huge difference
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

It does indeed. If anything, you have the implant to sort out your problems if this doesn't work out!  

TDix

Quick update....so swelling is still present but seems to slowly decrease daily.  Still dealing with the healing of my open wounds, but no infections and it seems to be progressing.  What is disturbing is that once my pain meds wear off the area where my dorsal vein burst is extremely painful and sensitive.  It feels like it's on fire.  I tried not taking any meds on Sunday and it was almost unbearable.  Also, the whole thing is hyper sensitive, so if I am not wrapped any brush of clothing is very painful.
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

TonySa

PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

Thanks TSanchez, I'm hoping I don't have nerve damage caused by the burst vein
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

Back to the Dr tomorrow.  I shouldn't have the amount of pain and swelling a week later.  Wants to see me first thing tomorrow morning
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


TDix

Has to be something connected to the vein.  I can feel a weird line going down the side where it burst
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

It sounds like my lymphatic nerve was damaged when my dorsal vein ruptured, which is causing the immense pain and tenderness I am enduring.  Everything else looks good according to Dr Wachs.  He is discussing my case with Dr Faysal Yafi from UCI, as well as another Dr who has retired but was a specialist in Peyronie's.  Says what I am dealing with happens to less than 1% of patients, so I am a rare case.  We got to joke around a bit to lighten the mood, and he told me to stop having so many nocturnal erections.  "you and your erections!"  As downtrodden as I am, it's nice to have Dr Wach's support through 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

Not a good day today.  Still dealing with intense pain, and while I have been able to work from home a few days, I'm in that depressed state.  My days consist of keeping my dressings clean, taking pain meds every 4 hours, and trying not to aggravate anything.  Can't do anything around the house, as any sudden moves bring on intense pain.  Traction, modeling, further injections just seem so far away at this point.  I simply want to be able to wear pants with no wrap and be comfortable.  It's been a week and a half since injection, and I don't see any light at the end of the tunnel, at least not today.  Even the thought of intimacy has me depressed as I am not sure I'll get even back to where I was two weeks ago.  
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 Wachs just called me and my case has kind of become an international discussion.  Dr Lue is involved as are other Dr's in Europe and Australia.  All say my case, why rare, is not uncommon.  Dr Wachs has prescribed antibiotics as a precaution, just in case the pain is being caused by pus as opposed to nerve regeneration.  Never thought I'd be on the desk of so many Urologists
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

Another quick update, the addition of antibiotics seems to have taken a little edge off the pain I have been experiencing.  Not sure what that means but I'll sure as heck take it.  Most open wounds have scabbed up which is good as they no longer stick to my wrap.  Just one open wound left where my huge hematoma was on the side of the glans, and using non stick pads and neosporin there.  Pain during nocturnal erections still present but I've gotten used to it, as bad as that sounds.  Have another week and a half to heal before we try the second shot of round 2, if we do it at all.  We will see
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

Yet another day of sitting in a recliner waiting for my wounds to heal and managing my pain.  I haven't been able to find any documentation of Xiaflex causing a vein to rupture or cause nerve damage.  Am I the only case of this?  Could be as the list of doctors viewing my case seems to have grown.  So frustrating to have something happen to me that is not documented ANYWHERE.  Slowly becoming an expert in penile anatomy
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

TonySa

Very disconcerting, could doc just done this poorly...injected directly into a vein?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

I originally thought that but I watched the whole injection, and it was straight into the plaque.  Needle was bending and it took awhile for him to push all the meds in.  My ultrasound showed that while I have a large amount of plaque, it is very thin, and directly over my dorsal vein.  I believe the medication either went through the plaque, or the needle did.  Either way, the vein burst 2 days later during a morning erection.  In talking with my Dr, he said Dr Lue has even injected around the plaque as well as into it, but he isn't comfortable doing that.  I'm just so dejected
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

TonySa

Dr Lue is the go to expert on xiaflex!
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

I know, I never thought I'd have him involved in my case.  I never brought his name up to Dr Wachs, even though I've seen his name all over the forum.  When he said he consulted with him, I was shocked and kind of happy to know my Dr had him in his group of cohorts.  But to hear that even Dr Lue was not too concerned, saying that all I can do right now is rest and recuperate kind of bummed me out.  I wish it was more like "we've seen this, do this, then do that", but as I'm sure a lot of guys hear have experienced with this condition is that when you hear to just leave it alone and it will get better, it bums me out.  I've got a freakin open wound that won't heal, what feels like a collapsed vein going down the side, and a lot of pain!  Sorry for the rant, I'm not one that's comfortable standing still, so to be confined to a chair all day is driving me crazy
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

TonySa

Any chance you can go see Dr Lue for an in person consult?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

I wish, I am in SoCal and he's up in SF.  It's possible, I'll bring it up when I see Dr Wachs again
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

Little victories now.  My last open wound FINALLY scabbed over, so no more sticking, wraps, and neosporin.  Swelling is almost gone.  Pain still very much present, but the signs of healing are all positive.  
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

TonySa

PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

Thanks T, you and a few others here paying attention to my ordeal really help me through the dark times
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

Hey man... Nice to see you are having the support of so many urologists on this. As for the support of people here, it's one of the reasons I post. This place has helped me a lot as well.

Keep us posted

TDix

Thank you pfract, I don't think you guys know how much your responses mean to me.  When I am at my lowest point with this condition I always gravitate here as I know I am sharing my experience with others in the same boat.  
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 scab opened back up ( I know, gross), so back to non stick wrap a little longer.  Pain not as bad now, but still there if I lay off the meds.  Site of injection still a little swollen.  Everything else has pretty much gone back to semi-normal.  
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

Alright now I would say I'm about 80% back to normal.  All wounds pretty much healed up.  Only thing concerning is the pain and a small"mass" where the injection took place.  Going to talk with Dr Wachs about 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

TDix

Dr thinks it's an internal hematoma from when my vein burst.  Seeing him tomorrow.  Will update
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 wachs, in consulting with the other Dr's, has determined we should no longer do Xiaflex.  It's just caused too much negative reactions in me at this time.  Wants things to calm down and return to normal.  Maybe revisit it at a later time, but surgery is sounding more and more likely in my case to correct my condition
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

Just want to thank everyone for viewing and commenting on this crazy journey of mine.  Not the outcome I was looking for, but I'd say at this point I'm glad I don't have to endure what I've already gone through again.  I was truly dreading another injection.  If I live with my deformity or go the route of surgery, I truly feel I did what I could with Xiaflex, and it just didn't work for 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

TonySa

Sorry for all you're going through, maybe an implant down the road would be a consideration?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

TDix

Thanks T that may end up being an option if all else fails.  If so I have a good support group behind 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

Perceptible Curve

That's sucks about your pain. Hope you improve soon. I too had a bad experience with Xiaflex. Told Dr I didn't want anymore shots and will discus further options. Hope to get grafting and maybe three piece prosthesis . Good luck with whatever you may do.  
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

Got a call today from the manufacturer to preauth another round, and after explaining what had happened to me it quickly changed to now they want to talk with me about my case.  Will keep you posted how that goes
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

No word from Xiaflex yet.  Saw Dr Wachs today, one month after last injection.  Still not fully healed.  Feels like my plaque did break up, but wants to see me in 6 weeks.  If fully healed, we are moving towards 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

lmn25

Hey Trav,

I'm so sorry to hear about all of the recent trouble you've gone through. I've had some minor improvement in my curve after two rounds, and I was a little disappointed that things had not improved more and that I'm still experiencing pain, but after reading your experience, it's helped me keep things in perspective and made me grateful for the small progress I've had. I know that this condition is just as taxing mentally as it is physically, so I just wanted to say that I admire how you've handled the whole situation. The main thing is that you have a loving wife to go on this journey with you, and that's huge! While surgery isn't currently something that I'm entertaining, my doctor has told me in the past that if Xiaflex failed for me, surgery would be an excellent option and that it often gets an undeserved bad wrap (disclaimer: that's his opinion, and I know others here would disagree). But all that to say that you shouldn't give up hope and embrace the positives -- I know, easier said than done. :) Good luck and continue to keep us posted!

-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,
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TDix

Thanks imn25 it means a lot that people like you are here to support guys like me.  As you know, it's not a topic you casually discuss around the water cooler.  It's extremely personal and can be devastating emotionally.  I will admit it has made me depressed, and some days are worse than others, but I take comfort in being able to get it all off my chest here.  This place is a form of therapy to just let it all out.  If I can be of any help to others with my experience, it brings me a small glimmer of hope.  I will continue to update all of you here, and pray for the day I am pain free and back to my old self.
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

Update....internal hematoma pretty much gone.  New skin in areas of the external hematoma still very sensitive.  I have scarred skin in these areas, like a light purple.  Erections still painful, but not claw the ceiling pain, more like an annoying pain.  Few more weeks till I see Dr Wachs for next steps.  Side note, have not heard a peep from Xiaflex  
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 going to try and take better care of myself.  I've been very depressed, and was drinking way too much.  I didn't care, and was really in a downward spiral.  Gonna lay off alcohol and try to eat better.  As a lot of you know, this can really eat you up from the inside
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

Glad to hear your internal hematoma is gone! It's also great that you have the self-awareness and conviction to take better care of yourself, that's really important. Sound like you're dealing with everything as best you can, keep it up!
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,
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TDix

Thanks man, yes the hematoma is pretty much gone, but the area is still not right.  I don't really know how to describe it.  I guess it's like wearing underwear with a staple in it that pokes you from time to time.  That's the only way I can describe the feeling.  Going to schedule an appt with my primary doctor also to delve into my depression.  I have a highly stressful job, money issues, and this condition all weighing pretty heavy on me.  Like I've said I'm trying to better myself and care again.  Most of this year especially the last few months I had practically given up.  I will say this forum has really been important to me through all of this and I want to thank all of you for being a form of support for 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

Another pretty personal side note.  Has anyone developed PE with this condition.  I was never one to last too long anyways, but it seems to have gotten worse, especially lately.  Of course I'm not the rabbit I was 20 years ago, and have to take things slow currently, but I just can't last that long.  Maybe psychological worrying something could go wrong, or just the increased sensitivity after my latest incident.  I'm not sure, but was curious if I was the only one dealing with 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

Bubba dawg

Terrible thing you have gone through tdix . I freaked out too when I got a hematoma.  Bag of blood etc. Doctor told me it was common and not to worry. He checked it out. Healed up. Did not have the vein burst you had.  Hope that heals up. Xiaflex is not a quick fix. Can take 5 or 6 rounds or more.  I did 5. Finished back in July. Still not perfect but livable . I take just 200 iu of vitamin e a day. I tried more but it led to sexual dysfunction. I could not have a orgasm. E helps soften the plaque. Doc told me to take a lot more per day. He never told me to wrap my penis at any time. Modeling though is very important. If the vein and nerve damage will heal , I wouldn't give up. I don't see erections causing your problem.  Long as you didnt masturbate or have sex for 2 weeks. Mine was and still is bending backwards. I got the injection on top. Not on the sides. Still bent some but not nearly as bad as it was
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

TDix

I'm over injections into my junk.  Too many problems and no results, just issues.  I'm at the point of living with the loss of length and my 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

Bubba dawg

I was afraid to get injections. But then I read that things can get worse to where erections get painful. Then you have to have surgery.  This is a progressive disease that can get worse if not treated. I see what you are saying. I would be asking that doctor some hard questions about why you had the problems you did. Hemotoma is one thing but the other is very rare. Erections cant be controlled. Not your fault. Good luck man.  
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

TDix

I was ok with the injections until I burst a vein.  Until you experience that you will never know the fear.  I thought I fractured.  Two visits to the ER after an injection pretty much signed me off.  It's ruined my psyche, my sex life, and my confidence.  Was gonna stop drinking, but f it at this point.  Cheers!  I hope others benefit from this treatment but for me I'm out
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

Met with Dr Wachs today.  Still not fully healed, and he recommended low dose Cialis to help with my PE which he said was completely normal seeing all the trauma I went through.  Recommended a second opinion, so I plan on making an appt to see Dr Faysal Yafi at UCI.  At this point I need to fully stabilize before any further treatment.  3 options, more Xiaflex shots, surgery, or leave it the way it is.  Dr Wachs consulted with Dr Yafi when my vein burst, so they have already collaborated on my case.  If I choose surgery, both Dr's will be involved.  I'm leaning that way, as is my wife, since she saw first hand how bad things got with my last shot
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

Bubba dawg

Cutting on any part of the body ain't no picnic.  Much less the penis.
5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

TDix

I totally understand.  Neither is weeks of hematomas, veins rupturing, and nerve damage, especially in the penis.
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

TDix - lots of successful surgery stories out there, don't let others discourage you should you choose to go that route. I would also advocate for low dose cialis -- it significantly helped improve the pain I had with Peyronie's. I take 3mg of the generic version (tadalafil) every night before bed.
Please go to PROFILE then FORUM PROFILE to replace this signature line text with your profile info such as
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