hello from Great Lakes

[john doe 66]

Been suffering with Peyronie's now for just over a year. Completed 1st round of treatments last month but no luck. Scar tissue is excessively heavy in my case. Doc says the second wave is shots. I'm terrified but I don't have much choice, I guess? Anyhow, living with this is really starting to drive me crazy. Getting angry & depressed and am glad to find out that this site exists. I have asked my doctor for a referral to a counselor who is familiar with Peyronie's so I can try and work our some issues. Wife has been super supportive thru all of this but I feel more with each passing day that I am somehow letting her down. (You know, a man's gotta be a manly man type thing)

Anyone here been down this road?

Thanks for letting me vent.

-John

[QuackAttack]

John,

All of your thoughts and emotions are perfectly normal. I think we all go through it to some extent. I did and still will have a moment of getting pi$$ed off. As long as it doesn't get to an unhealthy depressive state, which you can see some of that venting on the site. For me, focus your anger/worry into kicking the crap out of this condition.  Unfortunately, not everything works for everybody. If your are fortunate, Pentox with Traction and/or VED will solve your problem. It hasn't worked for me so I am now trying to have a much cleaner diet and eliminate all inflammatory foods, easier said than done and doubling up on my supplement regiment that I was taking long before Peyronies.

[Jimbruski]

John,

Almost everyone on this forum is in or has been in your shoes.

Welcome to the forum.  As you read the many posts and areas of concentration you'll find lots of great information about this disease and the steps members have taken to deal with it.  Feel free to ask questions and someone will help to clarify your concerns.

If you'd rather, you can always PM me and I'll be happy to share all I know about this disease.

Good luck, ask questions and remember that you are with a group of people who share your pain.

Jimbruski

[Jonbinspain]

I assume by shots that your Uro is talking about Xiaflex?  

Also, you don't specify what this first round of treatment consisted of. Perhaps you could explain?

You say the scarring is heavy. Is there calcification present?

In the meantime, read all you can on this site. It's for and supported by guys who've been there. There is more accumulated knowledge about the disease here than you will find anywhere - that includes the medical profession.  

[john doe 66]

Sorry. Guess I should've explained my situation a bit more.

1st round of treatment prescribed for me was Pentox pills 3 times/daily, in conjunction with a topical ointment (Verapimil) applied to area with heaviest concentration of scarring twice a day. (My primary scarring is a 3mm band, rather than 'normal' nodules or knots.) Doc also suggested some sort of traction device, but to me that just seemed like a 'grasping at straws' concept. I mean we've all seen those kinds of doodads advertised in the back of men's mags & online, claiming to be a miracle short-short cure that will give you a pornstar-sized monster 15" wang, etc., etc. ...so I was very skeptical and nixed the stretcher idea. Anyhow, the combo of Pentox & Verapimil has had essentially no effect; the curving hasn't gotten any worse but it also hasn't gotten any better. BTW... there IS some degree of calcification in the scarring. So, long story (and peter) short, my member still curves straight up about halfway along its length, at an almost 90 degree angle, like a corncob pipe or boomerang. *SIGH*

Pentration would be all but impossible because trying to bend it down to a degree of straightness required for intercourse is unbelievably uncomfortable, which naturally results in almost instant loss of my erection. And speaking of... erections of any kind (but especially strong ones) are downright painful, like getting your peepee smacked with a ruler or pinched with vice grips. Nighttime and piss hard-ons used to (and occasionally still do) wake me out of a sound sleep due to the pain. The level of pain comes & goes but lately has not been fun, to say the least. And while I can achieve orgasm, it's only while at a mushy 'half mast' and I'd feel like a jerk asking my wife to service me for some one-sided pressure relief, so I've taken to doing it myself in the shower every couple of weeks, to keep from having stone ache and/or humiliating & painful wet dreams. She caught me trying to do this while scoping out some nudie pics on the web the other day, and that was... a fiasco. (Sad thing is that I couldn't even get it up because think I've developed a mental block whenever I consciously start to get an erection because I know (and anticipate) the pain that inevitably follows, so it won't work or droops shortly after it starts rising.) This whole thing is so embarrassing & frustrating. And perhaps the worst part of it all is that neither I nor my wife can recall any specific incident that would have caused this condition in the first place. Although my doctor told me that it's not always one single instance/injury, and that something as simple as turning over and accidentally twisting or bending it while sleeping(!) could have done it. Ugh.

For me, the next wave of attack is some sort of injections designed to aggressively break down the scar tissue. The doc candidly explained that these will be both expensive and rather painful.  If that treatment doesn't work then he said that it's scalpel time - and I don't think I have the guts to try that. Everything I've read and the vids & photos I've seen just about make me faint/throw up.

The clinic was supposed to contact my insurance to find out if they will cover the costs of the injections.  I haven't heard back and it's been a month so on my wife's advice I have emailed the doc & his staff at the hospital a couple of days ago to see what the hold-up is.  Since it's a holiday weekend I don't imagine I'll get a response until the end of this week or thereabouts. Waiting on pins & needles now...

Is there anything non-medical that I can do? Diet? What to drink or eat (or not)? Thanks for reading.

[Jonbinspain]

Ok. So you're in the chronic phase now.

Firstly, if calcification is present, that makes things more difficult. It's not unusual for neither Pentox nor traction to fail to improve the situation. Verapamil cream usually has no effect either.

The injections your Uro speaks of are almost certainly Xiaflex. Yes, they are expensive and he should also have told you that there are no guarantees either. It may work, but will almost certainly not correct an almost 90 degree curvature. You will still be left with a significant degree of curvature.

Re surgery, I've been through it. Yes, there are risks attached, but with a good surgeon they are minimal. For me, it has restored me to almost what I was.  I was in a similar situation to you and had tried almost everything with little to no success. I felt that if I wanted my sex life back I had no choice.

Ultimately, it's your choice, but I would read the section on surgery, regardless.