First round of Xiaflex problem! Need opinions

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Bent77

Hello, this is my first post.  I've read quite a bit on this sight before deciding to seek treatment for my 55 degree bend to the right.  I just received my first round of Xiaflex treatments this week.  My injections were on Monday and Tuesday, rest on Wednesday, and modeling on Thursday.  Both days of injections were very painful, but my urologist thought everything went well.  
Thursday he numbed my penis and performed the modeling, wrapped it and told me to keep it wrapped for 24 hours.  Up to this point all I had was swelling followed by soreness.  On Friday while erect after the wraps had come off, I started to put pressure bending my penis to the left and felt a pop at the location of where the plaque is, and immediate pain.  I called my urologist because I was worried that I caused a penile fracture, and he told me that the popping was normal.  Today the spot where I felt the pop is very swollen and painful to touch.  I tried to get an erection to see what the damage was, and there is a good sized lump.  I'm worried that my Dr. is wrong and that I caused a fracture.  Am I just being paranoid?


QuackAttack

Bent,

You have reason to be concerned. Here is from the Xiaflex website. Fracture is a possible side effect. I recall seeing something that said you shouldn't get an erection for a couple of weeks, which is consistent with no sex for two weeks on the website.

XIAFLEX can cause serious side effects, including:
Penile fracture (corporal rupture) or other serious injury to the penis. Receiving an injection of XIAFLEX may cause damage to the tubes in your penis called the corpora. After treatment with XIAFLEX, one of these tubes may break during an erection. This is called a corporal rupture or penile fracture. This could require surgery to fix the damaged area. Damage to your penis might not get better after a corporal rupture.
After treatment with XIAFLEX, blood vessels in your penis may also break, causing blood to collect under the skin (hematoma). This could require a procedure to drain the blood from under the skin
Symptoms of corporal rupture or other serious injury to your penis may include:
a popping sound or sensation in an erect penis
sudden loss of the ability to maintain an erection
pain in your penis
purple bruising and swelling of your penis
difficulty urinating or blood in the urine


https://peyronies-disease.xiaflex.com/

Bent77

I don't seem to have any pooling of blood where I felt the pop.  Just a large painful lump, which happens to be at the injection site.  The biggest concern I have is the pain, and obviously the lump.  If I had a penile fracture would I have blood visible beneath the skin?  I tried to get a hold of my it urologist today, but the best I could do was a call from a nurse who had no clue what Xiaflex even was.  This whole experience is scary as hell!  I'm regretting even going through with it.

Pfract

No you are not paranoid. I don't have peyronies, but I did fractured my penis during sex and now have ed. You are not supposed  to bend the penis, but with this drug apparently the protocol is like that. Not all fractures result in blood under the skin. I just felt a tear and had an hematoma. In the er I was told it was nothing, and now I have ed and blocked arteries on my penis.

You should go to the er immediately and be seen by a urologist and explain everything to him. You might have a fracture but only a doctor can tell. Good luck  

I can help with questions if you want

Dros

Ok, first of all, I can tell you with certainty that there is absolutely no problem with having erections after Xiaflex shots. On the contrary, the whole idea is to stretch the penis while erect. Also, as I had my first round of shots just a couple of days ago as well, I can tell you that pain and swelling is normal. I actually had a very slight cracking noise while stretching as well yesterday and afterwards a swollen lump. But I'm pretty sure that, at least in my case, it's just ruptured blood vessels. A bandage has helped in making the lump smaller.

However, a pooping sound followed by immediate pain could indeed be a fracture... I'd see an urologist who can give you an ultrasound to make sure. Good luck :-)

Bent77


Thanks for the reply.  That made me feel a little better.  The most frustrating thing about this is that I can't get a hold of my urologist until Tuesday.  

Stabler

There should be an emergency exchange you can call if need be. All doctors have one. if you dont know that number, call the doctors office and the recording should give it.

Stabler67
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

Pfract

I read your both posts. Here and on the other thread. How are you sure it's not a fracture? We're you seen by a urologist and told him those symptoms? What you described is exactly like a fracture. I felt a tear, and had a small lump. Do you have previously experienced ED? I hope I am wrong, but if I am not you are in trouble....

How much force did you use to bend it?  

Bent77


I spoke with my urologist over the phone on Friday when it happened.  He seemed to think that it was plaque breaking up, and that I had nothing to worry about.  This popping or tearing happened when I was erect and doing the light stretching that the Xiaflex paper they give you tells you to do.  I don't think I was using too much force, but I don't know for sure. The lump that I have, is at the injection sites where the plaque is, so what he said made sense to me, but it is also much more painful then it was before.  I don't have any pooling of blood or eggplant look happening.  Just  looking at my penis flacid it looks normal.  I am able to get an erection, but you can see the lump where one never existed before.  I have no prior experience with ED, and this whole experience has been scary as hell.
     I tried to get ahold of my urologist on Saturday, because he wasn't on call, I only recieved a call from a nurse who had no idea what Xiaflex even was.  Another Urologist was supposed to get a hold of me, but he never called.  My urologists office is closed for the holiday and I'm waiting until tomorrow morning to try to see him.  

yyy

Bent77 please give us an update about your situation, thank you

Pfract

Please explain to me,  how can a urologist on the phone see your penis. I presume you wanted to avoid costs by not going to the er, but my penis looked normal too hey? I posted the report of my ultrasound here, showing the Ed I have, so.... I so hope I am wrong....  

Bent77

Here is an update on my xiaflex treatment.  I was finally able to see my urologist a few days after my last post.  He inspected the painful lump of scar tissue that had formed after the injections and where I had felt the pop while molding with an erection.  To my surprise he didn't use any kind of imaging equipment, and felt the lump in question.  He said that there weren't any signs of a fracture and that the lump and pain associated with it were normal.
Since my first round of injections I can still get erections without any problem, and have had intercourse a couple times without any probkems.  The bend is only slightly better than before, and because of the knot I now have, some girth has returned, lol.  The one thing that still bothers me is the constant aching pain I have from the newly formed knot at the injection site.  It is more painful with an erection.  I'm scheduled for another round next month, but I really don't think it is worth the risk, and will probably cancel my treatment.  If anything, I would find another urologist to administer this treatment.  
Would I have tried xiaflex knowing what I know now?  Probably not.

Pfract

That is good. Hope you are lucky. He you want to be extra sure, you can pay for an ultrasound yourself on a top doctor. 500$ more or less. Also, would you have a chance to find a doc that does ultrasound guided injections?