Hour Glass Peyronies

[JoeKeiroz]

I was diagnosed with "hour glass Peyronies" disease about seven  months ago, yet on fairly advanced  stage,  and my Doctor advice was to wait another three more months to make sure the plaque was stabilized.  According to my Urologist I need two injections of Xiaflex what will be administered on March the 5th and march the 7th " Obviously I have waited more than three months". By any chance, anybody here have experienced " hour glass Peyronies Disease " and treated with Xiaflex ?    I am very concerned about the severe side effects mainly "corpora rupture ", that requires emergency surgery and may possible cause severe damage on the penis and permanent ED. Would appreciate if anybody who has this injection experience any major side effect as mentioned on the Xiaflex Web Site. Thank you very much.

[Bubba dawg]

Have to ever watched the commercials on TV when it comes to meds? Many commercials say if you take this or that med you could die! List about 20 possible side effects. Any med in the USA comes with a disclaimer of dozens of  possible side effects. No matter how rare. I had 21 injections. 1 hematoma. That's it! Many possible side effects are rare events. They can happen. Not likely. Scared me too. BUT doing nothing will lead to sexual dysfunction if not already. Thing could get worse as time goes by. Then you will have to have surgery. I took my chances rather than live with a bent dick or worse. I could not have sex. Now I can. Not perfect. Some have had good luck with traction. Some with Surgery. Some bad things have happened with those choices too. I got mine done in around 5 months. Plaque is plaque. Hour glassing or not. Important to find an experienced Xiaflex doctor. Will most likely take a lot more than 2 injections

[JoeKeiroz]

Thanks Bubba dawg. your comments do make sense and its true. Thank you for your opinion and quick response.  

[JoeKeiroz]

Hi there. I was diagnosed with hourglass peyronies  in August 2018. My Doctor suggested me to wait another three months or so before start with Xiaflex injection.  I've been very anxious and scared thinking  about side effects as well. Got my first injection this Tuesday, March the 5th and the second one this Thursday, March the 7th. So far no side effects at all, but I am still very concerns about corporal rupture  since it most likely  occurs during the night when we have nocturnal erections and I do wake up several times a night with hard erections but so far no issues at all. Its been  scary when I wake up with erection but what I've done so far is as soon as I wake up I get up and walk around to make sure my erection goes down quick. Anyway, my Doctor told me  the probability to have a corporal rupture is like  the probability to win the lottery. If that is true I will be fine.  Got to wait another six week to go to the next cycle of injections.  

[TonySa]

Joe, you're right...that side effect is near impossible.  Meanwhile be sure to add traction to maximize the xiaflex improvement.

[Alibaba]

Tony, thinking  from the mechanics of it.  Think of a rubber band or uninflated balloon. The longer your stretch it the thinner it gets. With curved peyronies, pulling stretches the short side. The short side will always have more tension than the long side but that is what you want.  Concern is not about the thickness, it is getting both sides equal in length.  With hour glassed, I respectfully suggest a vacuum device to try to get the pinched area inflated to a diameter matching the rest.  Thoughts anyone? I am sure there is a a waiting period after an injection to prevent a hematoma.  

[TonySa]

Dr Lue suggested waiting three days.  Granted I had both a curve and hourglassing, do not sure if it's tecommended w hourglassing only.  

[Giumarvi]

Today I got my second cycle second injection of Xiaflex. I did not have any adverse reaction from my three first shots, yet today it appeared  swelling and bruises one hour after I got the shot. Not sure what I should do now because its after 8:00 PM. Anyway I am going to send my Doctor an e-mail asking for advice. Can this swelling and bruised be something abnormal that need emergency medical treatment ? The pain is very mild to the point of not bothering me at all. I would appreciate someone's advice .

[BillSmith]

Giumarvi

I have had 16 Xiaflex injections over the past year. I know it is such a stressful experience so I wanted to respond. It sounds totally normal to me. I have had many different reactions from nothing to pain, black and blue, and some crazy swelling. It actually resolves quite quickly. A few days. Wrapping with some gauze may help. Not too tightly. It has been a long road but my overall result has been very good. Good luck. Best wishes.  

[Giumarvi]

Thanks BillSmith for sharing your experience with me. All these black and blue and crazy swelling scarred the heel out of me.  Thanks again. Good luck for you too.  

[TonySa]

I agree, sometimes there is more of a reaction to the injections which may even be a good sign according to some docs.

[james1947]

Continue your conversation on the adequate board, so others can learn from this topic

James