New member here! Starting Xiaflex treatment next week for a 30 degree curve to the left. Will keep you updated on results
Waiting for the updates :)
James
Getting really anxious as the days count down...never thought I'd have to have injections down there at this age
Dr. Barton Wachs, he did my vasectomy back in 2002
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.
swollen and bruised at the moment....
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.
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 ...
https://www.peyroniesforum.net/index.php/topic,9973.0.html
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
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.
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.
Go back up and read the link I sent.
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
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
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.
Thanks Trav, appreciate you sharing your experience!
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
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.
I started hand stretching (gently) 3 days after, and traction 7 days after my second injection
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?
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.
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.
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.
Trav.. are you using traction also or just hand modeling?
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
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
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
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
Hey Trav. A lot of guys try various cycles before they call it quits. Why not do the same here?
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.
Nice sized hematoma on the side of glans. Not happy
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????
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
Dr came and drained hematoma. No fracture....put off second injection for another week. Again, surgery came up
Holy!!! That's a bugger... Try to stay calm man, and ask around the board what is normal and not with xiaflex... good luck!
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
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
I am going back to ER. I think it fractured
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.
After ultrasound and it was not a fracture. What happened was a vein burst under the skin.
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
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
Scared to sleep tonight, definitely do not want a nocturnal erection right now. May not sleep
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.
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
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.
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.
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
The Dr my Dr is consulting with is Dr Gelman I believe
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
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
It does indeed. If anything, you have the implant to sort out your problems if this doesn't work out!
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.
Oh my, hang in there guy
Thanks TSanchez, I'm hoping I don't have nerve damage caused by the burst vein
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
Good luck man!
Has to be something connected to the vein. I can feel a weird line going down the side where it burst
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.
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.
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
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
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
Very disconcerting, could doc just done this poorly...injected directly into a vein?
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
Dr Lue is the go to expert on xiaflex!
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
Any chance you can go see Dr Lue for an in person consult?
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
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.
Good news!
Thanks T, you and a few others here paying attention to my ordeal really help me through the dark times
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
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.
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.
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.
Dr thinks it's an internal hematoma from when my vein burst. Seeing him tomorrow. Will update
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
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
Sorry for all you're going through, maybe an implant down the road would be a consideration?
Thanks T that may end up being an option if all else fails. If so I have a good support group behind me!
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.
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
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
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
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.
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
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
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!
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
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
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
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
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.
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
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
Cutting on any part of the body ain't no picnic. Much less the penis.
I totally understand. Neither is weeks of hematomas, veins rupturing, and nerve damage, especially in the penis.
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.
Update, I have now developed foot drop in my right foot (inability to fully lift my foot). I am hoping this is not related to the nerve damage I got with my last injection as foot drop is caused by nerve damage.
Damn TD I am so sorry ur going through this. I would highly doubt it was the actual drug xiaflex that would cause this. Sure sounds more like the doc who did the procedure possibly hit something, a nerve with the needle . Sure hope it gets better!
Thanks man I actually got my nerve damage from when my vein ruptured, not from Xiaflex. I watched the whole injection and he was solely in the plaque. He's done hundreds of injections and is highly respected, so I believe it is simply my body broke down more than the plaque with the injection. The ruptured vein caused trauma to the whole area down there as it was like a balloon popped inside during a morning erection. Planning on seeing another doctor in January so I have two sets of eyes on this. Dr Wachs even recommended it, saying all he wants is what's best for me
My complications are extremely rare. I cannot find any other case even remotely similar to mine
Oh such a bugger man... That's so distressing. Hopefully it's not related and if it's, which it looks like it, may you find some sort of solution. :'(
I had one Hematoma . Pretty sure that was due to the Doctor cranking down on my penis really hard trying to work the medicine in. Scared the you know what out of me to wake up to that. Big ole sack of blood pooling. I don't think I got an erection during that time. I was on the phone to him pretty quick. Didn't care that it was Sunday lol. Your case should make members think twice about trying to perfect your penis with more injections. You never know what can go wrong. I know you didn't do that at that point. I am facing that decision right now. Not sure if I want to push my luck. Rare that your problem happens, but that doesn't make you feel better.
Xiaflex is made to look like a promising procedure, saying there is a 1% chance of a fracture, and that those that did engaged in sex within two weeks of injection. I was scared I was in that 1% even though I did not have sex. Nowhere in the risks does it mention possible vein rupture/nerve damage resulting in possible further nerve damage elsewhere in your body. Had I seen that I would've definitely had a harder look than I already did at injecting my penis. My worry now is that if an injection can do this to me, what would the result of surgery be?
Those nighttime erections were the worst part for me. I was more fortunate than you and others in that I did not have any ruptured veins or hematomas. Still, I did not sleep well for about a week from the nighttime erections. Once I woke up in a full yell because it hurt so bad.
I'll never forget being half asleep with an erection and involuntarily clenched my kegel muscles to feel a rush of blood and instant pain. Never want to feel that again! Let alone more erections the following days worried it would happen again!
TD..feel for you man. But with any kind of medical procedure, there is obviously a chance something could go wrong/ or it doesn't work. Unfortunately, you feel into that slim margin where something did happen. This board has a great deal of great information from the experience of many. But, all of that information is not always a good thing for the mind either. I liked that I found this board, but after reading your situation and a few others, it did scare the crap out of me. My doctor comes off very confident and basically shrugged off that much could happen. Had my first injection last Thursday and so far, minus the pain in the area of the plaque, only when touched, I have been pretty pain free the past couple of days. Certainly black n blue...hardly any swelling at all. I know we have talked about the spacing of injections. Which my Doc does a week apart. With our sensitive my area is, I am glad I have another few days to heal up. I can't imagine getting an injection today with how sore that area is. Anyway, I hope things turn a positive way for you!
I'm sorry if my posts scare some who are considering this treatment. I have thought in the past about removing them, but thanks to a few messages from Hawk, I feel that all sides of this treatment should be brought forward to those considering it. I am seeing my primary Dr tomorrow to look into my foot/depression issues, and have an appt with Dr Yafi next week to get another set of eyes on my Peyronie's issues. I really wanted to be #1, the guy who had Peyronie's just go away-didn't happen. #2 be the guy that had miraculous success with Xiaflex-didn't happen either. I've looked at it from the perspective of had I done nothing, where would I be? It's a tough call to make, and unfortunately for me my aggressive approach produced aggressively negative effects. Will keep updating on my status after these next few Dr visits. Also, know that Xiaflex injections are an aggressive treatment. As my Dr says, "you're injecting your penis". That is not a passive treatment.
I wonder if anyone has reported a tdix happening on this forum or any other forum?. If not, then that still leaves the possibility of doctor error. One case out of 10s of 1000s of injections, doesnt make Xiaflex treatment risky
Could very well have been. Hard to imagine he would've been the only one if so. Like a lot of stuff revolving around this condition, maybe when stuff like what happened to me occurs, no one reports it. Hard to believe it has never happened with any other doctor, and there was no documentation as a result. Then again if I never mentioned it here, who would know?
TD..no, ur story and information are needed in a forum like this. People need to know the negatives as well as the postives. It's knowledge over something many people, like myself, had never heard of this prior to getting it. It's always better to walk into a Doc having some insight. Like anything else out there, there good Docs and not so good Docs. First Uro I saw took about 10 min with me, then said see you in 6 months. That wasn't good enough for me. Then I found the one I have now who thus far has been great. There just isn't much out there about this issue. Xiaflex at least is available to at least help us out. But...at 60%, it's certainly far from perfect and obviously has its dangers. Only other options really are leaving it alone or surgery. I think surgery on our junk scares the crap out of me. I did consider it thinking it was a one time thing at a 95% success rate...get it over with instead of dealing with 6 months of injections. I am hoping I get enough improvements to not have to do all 8. We'll see. Hang in and good luck with ur appt.
I am glad TDix posted his story too. Just would have to see other similar failures here or anywhere to say Xiaflex is risky treatment. If no one else reports bad things , we are stuck saying the treatment is relatively safe. Usually bad news gets out somehow. Maybe others will come forward. I got the xiaflex disclaimer and there were a lot of terrible possibilities listed. Seemed they were doing the usual cya routine. Doctor assured me he had done many with no problems. He said my hematoma happened sometimes but not often. Yea if bad things happen we need to know. Right now I will continue to recommend it. I couldn't have sex. Now I can have sex. Not perfect. No lasting side effects so far. This is a long term treatment. Not a quick fix. Not painless. Bad things can happen but they are rare as far as we know. Other peyrones treatment options have risk too
Thanks guys. I don't think Xiaflex is risky, but it is aggressive treatment. For all I know this has some underlying issue that hasn't been discovered in me yet. I've thought about everything, and I remember even back when I got my vasectomy 17 years ago I got abnormal scarring and the Dr had to go back in and remove it. The fact my brother also has Peyronie's factors in too. I guess there is a reason a lot of urologists are looking at my case. Be interesting to see what the Dr says about my foot tomorrow. If it's tied into any nerve damage from my vein rupture, I think I'm a 1 in a million case. Do I think Dr Wachs is a bad Uro? No. Did he maybe get too aggressive with my last injection? Possibly. What has happened to me just simply can't be categorized, as there are so many variables with this condition. Genetics, a bad injection, underlying conditions....who knows. I will say it's a journey a year ago I would never have expected or even remotely anticipated. I didn't even have a curve at this time last year! Just a few bumps. It eats at me like you have no idea
GP ordered an EMG for my foot. We'll see what that finds. Going on antidepressants as well, which should help my mood and also my PE. Wasn't familiar with Xiaflex, not surprised. Felt generally bad for me that what is happening to me isn't common or familiar to most doctors. He's going to get with Dr Wachs for information on what happened to me and wants to be in contact with Dr Yafi as well. Seemed concerned for me. Guess that is what you want from a GP. I just want a Dr to take the reigns and fix me!
Hey man... Chances are it won't happen, but one of the side effects of the anti depressants could be a priapism. Keep an eye out for that. Erection lasting for 4 hours or more straight, rush immediately to the hospital.
The old anti depressants can cause sexual disfunction. The new ones like celexa are supposed to be better for sex. Most cause constipation. I would check out herbal anti depressants. I never had any luck with prescription anti depressants
Happy holidays to everyone here. Even though we all struggle with this debilitating condition, I hope you all have a safe and enjoyable holiday with friends and loved ones.
Same to you Tdix
Appt tomorrow at the Andrology dept at UCI with Dr Yafi. Will update how it goes tomorrow
Getting scheduled for a full examination, ultrasound, measurements, induced erection, the whole works. Will update with how that goes. Had a doctor from Canada with him, so yet another set of eyes on my issue. Did not rule out more Xiaflex, but wants to see what he's dealing with
Scheduled for exam on 1/7/19. Dr Yafi is young and very clinical. Knew who I was since he consulted with Dr Wachs. Sounds like my last injection punctured my vein, which he said was very easy to do. If I continue with Xiaflex he will have to be very careful. So I now have two uro's Seeing me. One very personable and experienced, but maybe not as clinical. The other very businesslike and technical. I like having both approaches, as they are working together in this.
I have not been a member long but I wonder if anyone else has reported a vein being punctured during xiaflex injections? How long will that take to heal? Long term effects if any?
I'm living it bubba, so I'll let you know. Over 3 months and still not right. I believe the vein and possible nerve have healed but the results of a vein rupturing in my penis seems to have created some sort of collateral damage. I'll find out in a little over a week
You doctor said it was easy to do. Referring to hitting a vein. Seems that we would have a lot of vein accident reports if it were easy. Just wanted to no if it is common or rare? I have not read of anyone else vein being hit. There just is no room for error when sticking a needle in a penis
I wish I knew. Seems my last injection was just probably too aggressive. The angle may have been wrong. Not sure as it's all new to me. Like I told my GP it's not like a knee
Just adding my experience with Xiaflex here although I have posted it elsewhere. 4 rounds (8 shots) of Xiaflex over 6 months. Started with a 40 degree bend downward and ended with just about straight. These results would be the very best of what one could expect since average reduction in curvature is approx 30% (or 12 degrees in my case). I was extremely diligent with modeling and even employed traction during the 6 month period. I did suffer 3 hematomas and they were quite painful. Approximately 3 months after I finished my 6 month cycle of Xiaflex I started to notice a curve upward. I am now approximately 18 months post Xiaflex and have a 35 degree bend upward. I am not sure if the latest bend was caused by scarring from the Xiaflex injections, a trauma during sex or ESWT which I tried post Xiaflex to help with hourglassing. At this point I have significant plaque and am considering an implant. For whatever it is worth, I would say that if you can have intercourse and you and your partner are satisfied that skip the Xiaflex and there are definite risks (e.g. hematoma and additional scarring). If you cant have intercourse then definitely consider it but only from a urologist that has been trained and approved for its administration. Happy to answer any questions.
I have read your experience curved. Lots of questions still on how I proceed forward. At least I am getting a full examination on what's going on inside soon. Then the question of how to proceed. I definitely do not want to visit the ER again with an eggplant hanging between my legs
That is why it is called a disease. New plaques can form. I think mine is curving more upward than at one point during treatment. Maybe just a lifetime of on and off treatments
My apologies bubba, I've thought a lot about what Dr Yafi told me and I believe being full of anxiety I misinterpreted some of the things he said. I believe he didn't say hitting a vein was really easy to do, rather it was fairly easy to do if you're not careful. Like I said Dr Wachs was really aggressive on my last shot to try and get a lot of medicine into my largest piece of plaque. I believe as a result he may not have been as careful as he should have been. I saw the whole injection and he was directly in the plaque the whole shot. He didn't reposition or go to another spot. I've seen YouTube videos where other doctors talk about how Xiaflex can break down more than just plaque, so I'm not sure if that happened to my vein or not. The fact I had massive hematomas the day prior suggests that the vein was probably compromised
Also wanted to update on my antidepressants. I am currently on 20mg of Citalopram and it seems to have taken the edge off my depression. I no longer sit and stew about my condition. Yes it is still very much on my mind but I don't sulk in my house all day because of it. Doesn't seem to have helped my PE much, so I will talk with the Dr about that.
TDix, Great to hear that the medicine is helping you. As others have expressed, I too am so sorry you have had to deal with these "extra" problems. Peyronie's is bad enough on its own as we all here can attest. We don't need any complications on top of it from treatment attempts or any other thing. Best of luck going forward.
You can stay in depression meds until you get your physical problems under straightened out. No pun intended . Good you found something that work for you. Help you get threw this. Anti depressant can cause sexual disfunction until you quit using them. The newer meds cause lesser problems. Also can cause constipation. You do what you got to do. Doctor can wean you off them later on.
Ultrasound this Monday. Not looking forward to an induced erection, but it is what it is. I will say that in the last two weeks I've noticed my curve is less pronounced all of a sudden. Plaque still very much there, but the curve seems to have straightened a bit. So weird. Still have a dent, and will get precise measurements Monday, but it appears to no longer be a 30 degree curve. Maybe 15-20 now
That's promising! I go Monday to start my second round of Xiaflex.
It is strange that sometimes erections look straighter than other times. I downgraded mine to 80%. My even be 70% at times. One my side it is worse. Standing up it is better. On my back it is worse. Very frustrating. Still haven't made myself go get more injections yet. Just not having that much sex anyway. Masturbation just straining the pelvic area. Cut back on that to one time per week. Hope you get good news with the ultra sound tdix
Also want to say I had my nerve test on my foot. Both Dr Yafi and the neurologist said it was not related to my vein rupture. Nerves all look really good. Going to get an MRI and physical therapy. Seems I developed a habit of crossing my legs during all the issues in my groin, and that can cause a mild case of foot drop
Hey, those are good news man! 8)
Thank pfract I will post how tomorrow goes....antidepressants finally kicked in last night for PE...had an amazing night with my wife. Curve has straightened a bit and I lasted as long as I needed. Things are looking better
yeah, i heard they made a difference. Tramadol medication (for bruising) also helps with that. You can, and should seek out help with and andrologist for PE. Makes a ton of difference. And don't believe those online stories about lasting less than 10 minutes and that being okay. 20 minutes should be standard.... i risk to say, at a bare minimum. Of actually penetrative intercourse, not counting foreplay of any type.
OK guys, well turns out I have a 50 degree curve! These antidepressants must've fooled me lately haha. Anyways, trying to make light of my situation. My scar tissue is extensive and calcified. I have a large piece that widens and narrows all along the top, and a long cord of calcified plaque running down the left side. I even have calcified plaque in between the corposa. He said we could attempt Xiaflex again, but with the calcification he doubts it would do much. Could do plication, but wants to get some of the scar tissue out, so looks like excision and grafting for me. When my rupture occurred he thinks I may have fractured up at the tip of my penis, which blew open my scar tissue. This could be why I have lumps around the base of my glans. All of it is calcified. Will be scheduled for surgery in March, as he wants to wait 6 months from my last Xiaflex injection. Will keep everyone updated.
You are a good candidate for Surgery Tdix. Just fix it one and for all. Sorry for the bad news. Least you now know what your are up against. I got some calcification too. Did the doc say what causes Calcfication ?
For me it appears to be genetic
I am also participating in a study conducted by UCI in regards to gut bacteria and it's connection to Peyronie. A person involved with the study came in after my ultrasound and asked if I'd like to participate (provide a stool sample)....I agreed. Kind of interesting they are looking at that
I took 3 weeks of anti biotics ahead of surgery right before I got peyrones. My gut bacteria was messed up
Xiaflex veterans and novices alike, just had my first shot of the second round yesterday. Wow, this one has left me much more bruised and swollen than the first go around. I don't think I ended up this bruised after two shots and modeling last time. Fortunately I have two days before the next one, but I don't see how I'm going to do the second one as I am now.
Good luck to you kingprof....hoping all you get is the bruising and swelling
So it now has been made clear my journey with Xiaflex has come to an end. I am too calcified for further injections. I hope my experience at the very least presents others with valuable information to not only make their own decisions with regards to Xiaflex, but also opens up a dialog that they can present to their prospective urologists that perform the procedure. I wouldn't wish what happened to me on any of you, and I hope others truly benefit from the treatment. Just was not in the cards for me. I will be opening another thread in the surgery section, as I am going forward with that option in March. You can follow my next chapter in this roller coaster ride over there. Good luck to all of you!
Thanks TDix, I'm sorry that you have had this difficulty. I hope all goes as well as possible with the surgery. Please do keep us informed.
King..in regards to your bruising, swelling, this was the one thing my Doc said is the main reason he and others wait a week for the second shots of the rounds. So that the swelling subsides so they don't have difficulty with the injection into the plaque. Not to mention how sore some people still are after the first shots of the rounds. I am schedule for round two in a few weeks. I still can't say if i had improvement or not after the first round. My plaque does seem smaller as well as more malleable. As I mentioned, the second shot of the first round hardly did much at all in terms of bruising and swelling. Probably just lucky.
Hi Tonyode, I like your Dr.'s approach! I will definitely ask mine on Thursday for a reprieve after I show him the current state of the equipment. As I said, I can't imagine going right back in at this point. I hope you continue to be lucky with respect to your discomfort, we can all use a little luck in this thing. My first round was not nearly as bad as this one is so far, then again if I get more out of the second round, I'm likely to conclude it was worth it.
I too had my shots a week apart to allow for proper healing. Of course that only lasted one round but if you feel your body needs a week by all means do it. I honestly don't see how they could accurately get in a good shot when you are still swollen
One time after an injection I had a stinging sensation all night. Right where the needle went in. You get several different types of reactions from the meds and injection. Usually well enough by the next injection. Even though it doesn't look or feel like it will. Bruising is a normal part of it
Kingprof...here is a real good video from Dr. Khera. Some solid studies and date about different treatments. Towards the second half of the vid, he talks about Xiaflex injections and the spacing of time for injections. The company basically made up the cycles and spacing for shots for each cycle (1-3 days). They had no data to back up why they recommend 1-3 days spacing for each round. Dr. Khera. He even goes as far as saying that doing 1 shot per month over 8 months would have similar results as doing the company cycles. Good video backed up with data.
https://www.youtube.com/watch?v=l8BLsd3QF9o&t=354s
Thanks Tonyode, I'll definitely watch. I had my second shot today and with that 1-3 day spacing they are brutal.
Whether it works the same or not I like to get painful things over with asap. Waiting around a week for the 2nd shot would be more brutal for me. But we really dont have to speculate on what way is more effective. We all get the results soon enough. Results are all over the place even doing it 3 days according to post on this forum. Some had good results . Some bad. Some in between. My dick is still not perfectly straight. Still really pulls on my pelvic area during masturbation. I do well having sex in the missionary position only. I will take that until I can afford more injections or see how the calcification is effecting treatment. Just glad i can have sex again. In the beginning the doctor said this would straighten my penis out. I guess he didnt say how straight lol. So I will give him the benefit of a doubt. Still better than the alternative
Well guys, just finished round two of Xiaflex. The modeling session today was brutal after yesterday's injection. My uro said a few times that he thought we made real progress this time, we'll see. He may have just been saying that to quiet my yelping. Time to heal up.
Ice, Ice and Ice for 24-48hrs King. I think that really helped me. Did ur uro wrap up your penis as well? Mine does, fairly tight. He said keep it on at least 24hrs. I kept mine on 36hrs with both shots in first round. I had very little swelling and minimal bruising. I think the combo of ice/cold and the wrap helped with the bruising and swelling quite a bit. Anyway, I have about 3 weeks to round 2. I can't say for sure, but I think the first round helped. When I have an erection, I don't have near the indentation I had previously and it looks as though my curve is better.
Hey tonyode, yes he wraps me up pretty tightly. Not after the final modeling session, but after both injections. Thanks for that video by the way, very informative.
Glad to hear the first round worked so well for you. I didn't see much improvement at all after round 1, but I'm hopeful this time. I mean, it's nice to see some incremental improvement for purely psychological reasons so that we can walk back in that door for another round, you know?
Ya those doctor modeling sessions can make you arch your back. That is when my hematoma happened. A little too much wrenching. I think things went backwards after that. I really think I was completely straight at one point. I should have quit while I was ahead
Wow, just reread my thread....how naive I was back then. I trusted my uro...my old by the book uro. He's a good guy, but man I wouldn't let him touch me now. Ruptured vein???? Yeah right. I fractured. A major lesson to find a true specialist, not a general uro. Most focus on prostate and continence issues, not peyronie's. Maybe had I gone to a specialist like Yafi first I would've gone a different path. Who knows? But I now have an implant and all this is in the rear view mirror. Crazy reading this again! Wish I had the pictures! It would be like a horror show