Diagnosed around 18 mos ago....

[squirrel]

Hi everyone,

To keep it short, I am 44 now. Around 2 years ago or so in the middle of the night I woke up to pee (with an erection) and noticed that my formerly straight as an arrow penis had taken a curve upwards starting at the midway point. I was in an unhappy relationship with not really any sex happening so I hadn't been paying my penis a lot of attention. I honestly was like, "who knows how long ago this happened." There was no injury or anything that I'm aware of. Like I said, it wasn't even getting a lot of use at the time.

I went to the doctor the first time who said he didn't even know what it was (which was shocking to me). They actually did an MRI on me and saw nothing unusual. I confided in one of my best friends who told me exactly what it was, because he was in the know on another friend of ours who has a much more severe case and had been seeking treatment.

So I called my doctor and said, "I know what it is. Get me into see a urologist ASAP." I've been seeing one of the foremost urologists in the country. I've been on Pentox for about a year if not longer. The differences with me though, are, there is not and never has been one bit of pain. More importantly, we discussed the shots that they can give you to break up the plaque, but she can not, nor can I, find any specific lumps of plaque. She said she wouldn't be able to ID where exactly to shoot. Honestly, she's kind of told me that it just is what it is and there's nothing she can do, short of surgery which neither of us considers to be an option worth considering.

I was prescribed a VED, which I admit I have never used consistently enough that I should expect results. I've also read too much discouraging data about their effectiveness to really motivate me. I've been trying to get back into it this week just to see what would happen if I was consistent for say, 30 days.

I was taking Ubiquinol already just as a health supplement, as well as Arginine. After reading about both of those being used in Peyronie's treatment, I recently upped my dosage on both to the recommended amounts.

So to summarize:
- Curve happens out of nowhere
- No pain
- No erection difficulties
- No specific lumps

I'd love input from the pros on here about my situation. I know some would say I should count my blessings for those things and move on, but it definitely makes sex a little tricky. I was fairly happy with the length God had given me when it was straight, but now that it points up, it's lost length and sex is not as easy as it was.

Not sure what else to add, but feel free to ask questions. Just looking for some input. It even crossed my mind that it's not Peyronies? Is there any other possible cause for this sudden curve? Or am I just on the luckier end of the spectrum? It also has not become any more curved that I can notice since I first discovered it. It's been pretty consistent....

Thank you!

[nemo]

Welcome.

It sounds like a classic case, better than many in that there's no pain and doesn't seem to be progressing. You're on the best oral treatments you could be on right now, so that's great. The only thing missing is some low-dose Cialis to increase the blood flow to the penis. As far as the discipline to stick to the VED, that of course is all on you.  

I'm a bit surprised you can't find any sort of lump/nodule/plaque when flaccid (nor can your Uro) but that doesn't mean it's not Peyronies Disease, it only means the plaque isn't "palpable." Whether it is or isn't is really kind of irrelevant - it's enough to cause a curve, clearly. I remember my Dad saying he developed a curve and couldn't feel a nodule either, so it happens.  

I say stay on your treatment. Ask your Uro about adding daily Cialis to the mix (Pentox/Cialis/CoQ10 seem to be a cocktail of sorts), and give the VED a legitimate try. That's really about all most of us are doing. Unless you wanted to go to the expense of getting diagnostic testing (ultrasound, etc.) to specifically nail down where the plaque is in order to attempt Xiaflex injections, I think you're doing all that can be done at present.  

Sounds like you're managing it well.  

Best,
Nemo

[squirrel]

Thanks Nemo - yea, that's the weirdest part - that she can't find a palpable node of plaque. Even when I'm flaccid, there's just nothing noticeable. And like I said, before they even diagnosed it, my doctor ordered an MRI for me. Like, I was in the giant tunnel thing with the horn and the earplugs....the whole 9 yards. And they saw nothing.

I've never heard of the putting Cialis into the mix. I'll talk to my doctor. I just feel like kind of stepping up my efforts on this to see what will happen. I'm going to commit to the VED. It wasn't really a lack of discipline, I just felt like, "this isn't gonna do anything - why bother."

Thanks so much for your response! I'm determined to get this "straightened out."  

Quote deleted by moderator - James
Please read the forum rules!!!

[nemo]

Yes, the combo of Pentox/Cialis is thought to have an anti-inflammatory as well as anti-fibrotic effect.  As I recall, there was even a Canadian study (I believe) that saw promise for Cialis in remodeling septal scarring, albeit in mice, I think.  But I can't see a downside to Cialis, even if it's solely to keep more blood moving through the penis and encouraging nocturnal erections.  

Nemo

[squirrel]

Thanks Nemo - is there any risk in long term use of Cialis? Especially when you don't have problems with erections as it is?

[nemo]

Not that I'm aware of - of course the package insert will give you all the potential side effects.  I've been on it myself, daily, for more than a year and have had no issues. I know others have been on it for several years.

Nemo

[bigfish]

I've had Peyronies Disease for 2 and noticed a plaque the first time this week.
BF