Peyronie's diagnosis, advice/suggestions

[blueranger]

Hey all, hopefully this topic helps some of the rest of you as well -- stuff like this is a big reason why I joined this site in the first place, so let's discuss.

I recently went to my primary care doctor then urologist regarding a crazy almost 45-degree bend upward just below the head of my penis when I get an erection. It developed in the last 8-9 months pretty quickly, and it finally got bothersome enough to overcome the "embarrassment" of talking to doctors about it.

I have always had an extremely straight, uniform penis until now, making the change all the more striking. Not only visually, but lengthwise it's been greatly reduced. It also is extremely uncomfortable to get an erection. Almost painful sometimes. Pain isn't quite the right word -- but like bending it towards the curve (even just inadvertently while moving it around) causes waves of a feeling like nausea or getting punched in the area.
I can feel the tissue causing the problem while I'm soft, it's kind of in the middle of the shaft, and it's very easy to feel, nothing like that has ever been "in there".
Talking with the doctors after doing my own research, they felt around and it's about a ~3cm long area of dense tissue, likely scar tissue. I don't recall any damage in the area, but they said it can come from almost anything, even very minor things, and it just happened to be the way it started to heal and kept going, the way normal scar tissue forms.

I guess there's not a ton of medical research on this area since it's seen as so embarrassing, but it happens to pretty much everyone on some level, even unnoticably. Damage to that sensitive tissue is practically unavoidable, during activities, sex, or just life. It doesn't affect most people very adversely, but many guys will have their penis erection shape altered over the course of their life by this.
The treatment plan is to try and "break up" the tissue or weaken it so it allows the penis to engorge with blood during an erection as normal rather than it basically pulling it in a direction because the scar tissue doesn't stretch.
So I'm on a low dose of Cialis to try and help get more blood flow to try and stretch it out more, as well as Trental to try and improve blood flow and break up any clotting that might be involved in there.
He did tell me that basically, it's not known to be very effective in most cases, but they do try it first to see if it's an easier fix.
I guess after like 6 months if there's not much improvement and the angle is over 30 degrees (mine is I think), they can then look into injections to break up the tissue, as well as a stretching traction device called RestoreX that is actually very effective in straightening and restoring length, but it is pretty expensive and not covered by insurance, plus it is -- of course -- quite involved and a pain to use.

So I thought I'd put it out here for you guys -- anyone else had this problem or something similar and have suggestions or advice? Is there a lower-cost traction device that I can get and try myself? Everything I see on this says the sooner you catch it and start treating it the better the recovery chances are, so I wouldn't mind trying to get a device to straighten it out. There seem to be a lot of those things online, but I have no idea if they do the same thing as the RestoreX or are as effective, or even how to use them very effectively!

Anwyay, I'd be thankful for any suggestions or advice, and hopefully anyone else with similar issues can see this and come across some resources that might help them. I'd post pictures if other people also did, I wasn't sure how useful that would be, and I'm much more bashful than most people here so I'd appreciate not going first
I know this is usually something people avoid bringing up with doctors or even loved ones that could offer support or advice.
And isn't offering support to larger penises what we do here??

Thanks everyone!

 

[Eisenhower]

I developed PD back in 2001, when I was 30. Similar situation to yours - nodules, pain upon erection, bend just behind the glans (head). In my case, the bend largely "released" about 4-5 months in. It's left me with some distal softness (floppy head) ever since, since blood doesn't flow past the old scar tissue the way it should, but it really hasn't been a problem in terms of sex or erections.

From reading your post, you're doing everything you need to be doing. Cialis and Trental (Pentoxifylline) are the two most relevant oral meds you could be using. There is no proof Trental will help, but it won't hurt, and the Cialis is thought to have a sort of anti-fibrotic benefit in addition to the blood flow and erection benefit. Always good to keep good circulation throughout the penis to help heal what can be healed and keep the rest of the tissue healthy, as well.

Restor-x, also state-of-the-art. Never used it myself, but it was developed by Dr. Landon Trost while at the Mayo, and he's one of the few real PD specialists in the US.

I know it sucks dealing with this, believe me. I spent years of my life fretting about it, but the simple truth is, the best sex of my life was had AFTER I had my run-in with PD, so don't assume the worst. One of the bits of wisdom about PD is that in 1/3 of the cases, the condition remains as is and doesn't get worse or better. In 1/3 it gets worse. And in 1/3 it gets better. This means there's about a 2/3 chance you WON'T get any worse than today, so don't assume the worst.

I would suggest you check out peyroniesforum.net - it's been around for decades and has provided knowledge sharing for literally thousands of guys in your (and my) exact situation.

You will survive, and odds are, you'll be just fine. It seems bad now, I know, but the pain virtually always goes away with time, and the bend very well may get better (perhaps not back to normal, but less curved) naturally. If it ever does get so bad it makes sex impossible, there are options even then, so take the advice of a veteran of this little-talked-about "disease" - don't let it get you down.

BTW - PD is likely FAR more common than thought, it's just that most guys who have it don't actually report it to their doctors and thus, the numbers getting treated remain relatively low. Hell, several years after I got it, my elderly dad told me he woke up in the middle of the night and noticed his erection was bent. He only knew it was PD because I'd told him about my problem years before. At that point, he wasn't using it and didn't even care, but it just goes to show, many men never report it to their doctor.

Hang in there! And check out the PD forum I mentioned, it's gonna have lots more relevant experience than this forum (as that's what it's designed for). Best of luck!

 

[coolestguy]

I'm surprised the Dr didn't offer surgery as an option. I think the insurance should cover some expense because it affects sexual life.

 

[Eisenhower]

Surgery is really only a last resort for PD and has its downsides including length loss if they basically suture the opposing side to straighten the curve. Excising the scar tissue requires grafting in replacement, and that's quite involved. I think generally the plication method (suturing the opposing side as mentioned) is the most common PD surgery as it's less risky for damaging nerves, etc.

Xiaflex injections, designed to basically dissolve the hardened scar tissue, just came on the market in 2014 and are less invasive than surgery. That would be the go-to strategy if the scar tissue shows no improvement on its own after some time. The fact that the OP can readily feel the scar tissue (nodule or "plaque") when flaccid is a advantageious for Xiaflex treatment, as the doctor has to be able to readily feel the nodule to be able to inject the solution into it.

But again, having had this less than year, the OP is nowhere near being a candidate for surgery, and I'm not even sure if a Uro would do Xiaflex this soon in the game - he'd need to speak with one about that to see. Obviously, healing on its own is preferable and less costly (though Xiaflex is usually covered by insurance.)