My story...and first round of Xiaflex

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Perdido_Key

Just found this forum today, I've been reading a bit and I just joined.  I'm glad to see it, as I haven't seen very much frank discussion about Peyronie's.  I hope this is a good, supportive, sharing community.  On the surface, it seems to be.

Here's my experience so far, and I'll be completely honest and forthcoming.  Hell, I'm anonymous here, so why not?

I'm 49, white, married for 25 years, no kids.  Good shape, not fat, avid cyclist and swimmer.  Military veteran.  I don't smoke and have never used drugs of any kind.  I take no medication.  I don't even wear glasses.  As part of my job I have a rigorous physical every year and my BP & cholesterol & EKG and all that stuff are normal.

Sex life is not what it was 20 years ago, but still good.  Intercourse with the wife about 1x per week, masturbate maybe 3x per week.

June of this year, wife & I are having sex.  I look down and notice my penis just doesn't look 'normal'.  It's noticeably shorter, noticeably thinner-around, and definitely not rock-hard.  I finish, but it's a definite "WTF" moment.  Never saw my penis look like that before.

Back up:  About two years ago, I started having the odd bout with ED.  I'd lose my erection in foreplay, for example, and wouldn't get it back.  It happened about twice a year.  My wife & I chalked it up to getting older, and would usually have good sex the next day.  It became something to playfully joke about, as we get close to 50, we kid each other about getting grey hair or doing boring, "old couple" stuff, etc.  We have a good marriage and we're open about everything.  So this weird-looking penis thing was...I don't know, hopefully temporary.

It wasn't.  Every erection after that was the same:  much smaller, in length and girth, and there was a band of hard stuff around the shaft, about a third of the way up that gave my penis that 'hourglass' appearance.  And it started to hook to the right.  And the pain started.  A dull ache that began as soon as I got hard, and the pain would stab if I flexed my muscles down there...you know, the the stop-urine squeeze.  That really hurt.  Flaccid, everything was normal.  But on erection, I noticed that I was hard and thick as normal BELOW the band around my shaft, like between my body and the band, but from the band to the head of my penis, it was skinnier and did not get fully erect.  I started reading and researching and figured out immediately what the problem probably was.

Went to a urologist who confirmed Peyronie's and said his preferred treatment plan was Xiaflex.  He told me Xiaflex was not a pleasant process, but I didn't care.  I told him I'd do whatever it took to get my old self back.

I'll spare you the details about dealing with my insurance company, but believe me when I tell you that Xiaflex is ridiculously expensive.  Fortunately, the manufacturer offers a co-pay card for guys with certain insurance plans, and I was lucky enough to qualify for it.  It boggles my mind how much it costs, but that's another discussion.

Here's the plan for me, briefly:  Each round is two injections, one on each side of my penis, and the medicine is injected directly into the plaque.  The two injections are a few days apart.  That's one round.  My Dr. said it might take as many as four rounds, with six weeks in between rounds.

So last Friday, first injection.  I was expecting him to numb me or use Lidocaine, but he said no, because the needle for numbing me is about the same gauge as the actual injection.  So it hurt like a bastard for the 15 seconds he was in there, injecting the plaque as much as he could.  I thought I would break off the edges of the exam table I was squeezing them so hard.  It was over soon enough though, and I was out the door.

Friday night and all day Saturday, I had some profound swelling and purple bruising.  I was expecting it, as the Dr said that was the medicine working, breaking down the plaque, and not the trauma from the needle.  Some pain to the touch, and by Monday the swelling was down.  Today (Tuesday) was my 2nd injection.  Same painful injection without numbing, but I gritted my teeth, squeezed the table again, and it was over pretty quickly.  It's been about 12 hours now, and there's some swelling, but nowhere near as bad as after the first injection.

So now I wait six weeks for round two.  In the meantime, I'm to stretch my flaccid penis out with my fingers for 30 seconds a couple of times a day, and bend it straight a couple of times a day if I get a spontaneous erection (e.g. first thing in the morning).  My Dr. is hesitant to predict my chances of success, because he doesn't want to get my hopes up, but he says he sees very good results far more often than not.

As for what caused it, it's a mystery.  I've never been injured or had trauma to my groin.  Dr.'s theory is I rolled over onto my penis while sleeping with a nocturnal erection.  Probably more than once.

So that's it.  Fingers crossed and hoping for the best.

Has anyone else been through the Xiaflex gauntlet?

dru92646

Hi and yes I had similiar expierences as you did. Keep in mind that Xiaflex is only successful in about 1/3 of cases.Good luck and I hope you beat this thing. It's tough to take when you are healthy in every other respect but remember many diseases don't care how healthy you are.

QuackAttack

Perdido,
I have gone through 7 rounds of Xiaflex. I started out at 50 degrees and am at about 20 degrees. If you want to completely eliminate the swelling, you will need your URO to give you a roll of the Coflex that you get wrapped with and wrap it continuously for several days. Along with this I have found that using a Neo Max Gold healing magnet is the key to reducing the inflammation. Lyon Legacy sells the magnet and you wrap it inside the coflex on the bottom of the shaft near the head of the penis. I have found that the blood pooling and swelling is usually toward the bottom of the penis. My guess is gravity is working on pulling it to the bottom because the head of the penis is down. Every time I have used the magnet, I haven't had any swelling.

I would also suggest getting a Penimaster  Pro traction device and a VED to complement the Xiaflex.

LWillisjr

Before Xiaflex it was Verapamil. Yes, many on the forum have been through what you are experiencing. Hang in there.

There is no single cure and you don't know what will work for you.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Somanyquestions

Perdido Key, thanks for sharing. Haven't hit the Xiaflex decision/discussion yet with the Urologist. Your story was educational - again thank you for sharing.