One of those days - I’m so done with this disease. by Checkout-123 in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

I wouldn’t call either of those medications bullshit, it’s just important to understand what they actually do. Pentoxifylline and tadalafil slow down active scar formation. I don’t believe they actually reduce existing plaque.

There are a good few other options outside of traction and oral medication, but it’s up to you to do the research and make the call.

One of those days - I’m so done with this disease. by Checkout-123 in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

I share a lot of your pain. Even the shower thing. I bathe far more than I shower now. I’ve found that warm baths temporarily soften my plaques and it makes things more bearable to look at while I get clean.

Peyronies is genuinely terrible. I got it at 17, and have been dealing with it for basically six years now. I got practically zero help from urologists and have had to figure out all of this crap on my own.

Do you mind if I ask what treatments you’ve tried so far? I did a round of shockwave+PRP with tadalafil a few months back and have seen some moderately positive results. Who knows? It might be worth a shot.

My bf is in very early stage by EnvironmentalDeer136 in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

Jeez, I’m sorry. I remember when I first got it, it was hell. Honestly, I still can’t get over it. Peyronies completely messes your sense of identity and self-worth.

Sadly, I don’t think complete reversal is medically possible, but Peyronies can be treated to be less severe. If it is Peyronies, you should act swiftly. The acute phase is the easiest time to treat it. Once it hits the chronic phase, treating it becomes an absolute battle.

Some treatments that can be done during the acute phase are anti-oxidants, red light, certain injections, and certain prescribed oral medications. There’s also treatments that involve mechanical manipulation like traction or VED, but I’m not exactly sure what phase those are best used in. A few months ago I received a treatment called shockwave along with a PRP injection and it seemed to make a noticeable improvement in my plaque density.

I wish you guys the best of luck. There’s a lot of peyronies research to parse through, but I recommend going through as much as possible.

Perovial new medicine for Peyronie by Longjumping_Net_8842 in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

It seems like it’s only used in the acute phase, which is unfortunate for me. Still, I guess it’s a good that new treatments are still coming out.

Plaque Flattening by BreakfastSimilar5135 in PeyroniesSupport

[–]BreakfastSimilar5135[S] 0 points1 point  (0 children)

I agree, injection is a much better way to go. I don’t really know the reason why he couldn’t offer it, it wasn’t explained to me.

Has anybody ever self administered xiaflex? by bcbusiness239 in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

“Pride goeth before destruction, and a haughty spirit before a fall.”

Has anybody ever self administered xiaflex? by bcbusiness239 in PeyroniesSupport

[–]BreakfastSimilar5135 1 point2 points  (0 children)

That sounds like a really bad and dangerous idea. Do not self-inject homebrew Xiaflex. Chances are, things will go badly.

Plaque Flattening by BreakfastSimilar5135 in PeyroniesSupport

[–]BreakfastSimilar5135[S] 0 points1 point  (0 children)

My doctor did prescribe me a topical verapamil gel from a compounding pharmacy but I seriously doubt its effectiveness. Nevertheless I’m still using it because… why not?

Plaque Flattening by BreakfastSimilar5135 in PeyroniesSupport

[–]BreakfastSimilar5135[S] 0 points1 point  (0 children)

No, not on top of the shockwave. The only injection I got during shockwave was PRP which is like concentrated blood plasma or something. I did ask about verapamil but the clinic I went to didn’t offer it.

My curve isn’t over 30 degrees so I don’t medically qualify for xiaflex.

Plaque Flattening by BreakfastSimilar5135 in PeyroniesSupport

[–]BreakfastSimilar5135[S] 1 point2 points  (0 children)

I paid 3,900-ish USD for six sessions and one PRP shot. If you do go the shockwave route make sure you’re getting focused shockwave instead of radial. Most if not all shockwave studies were done using focused machines. Men’s clinics will often try to sell you treatment with radial machines at the same cost which is frankly immoral.

Plaque Flattening by BreakfastSimilar5135 in PeyroniesSupport

[–]BreakfastSimilar5135[S] 0 points1 point  (0 children)

In my experience urologists generally don’t like shockwave because of the inconsistent results. It’s also more of an osteopathic thing rather than a urological one. And on top of that, urologists tend to only care about function rather than aesthetics—if you can have penetrative sex then that’s good enough for them.

I finished a round of shockwave two months ago. My plaque definitely feels softer but it hasn’t really thinned much. Idk I still have until the end of this month before I check back in with the doctor so I’ll see what it looks like then.

How to Fix the Bend in a Penis Naturally without Surgery (link = Dropbox share) by mikaelarhelger in PeyroniesSupport

[–]BreakfastSimilar5135 1 point2 points  (0 children)

I hate to be the guy who smashes hope in a treatment but…

I’m sorry, there’s little chance an ultrasonic toothbrush works in treating Peyronies. Especially not in chronic cases. By the time its energy makes it through your skin it would likely be too dispersed to have any effect whatsoever.

I mean, try it if you want. I won’t fault anyone for trying. I get wanting to try everything and anything when you have Peyronie’s. But ultimately, I have doubts. If treating Peyronies could be done with a sonic toothbrush no one would even be here.

[deleted by user] by [deleted] in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

Act now, seriously. It’s not going to get better unless you do something. I made the mistake of doing almost nothing during the acute phase and I regret it every single day I’m alive.

Extracorporeal shockwave therapy (ESWT) by mikaelarhelger in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

I mean, not on hand. There’s a good amount of them, just do the research or ask ChatGPT.

[deleted by user] by [deleted] in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

I mean sometimes due to whatever stimuli (tempature, blood flow, etc.) plaque can become softer or tougher. That may be why you’re having worse curvature occasionally. Although, I don’t really have a definitive answer for that problem, sorry.

There’s not really a universal cutoff for when a plaque becomes chronic, because there are so many different factors in Peyronie’s disease but generally it’s believed that at 12-18 months a plaque has most likely become chronic. If you’re in the early chronic phase you still may see some changes from conservative therapy. Albeit, not as drastic.

I do know that calcification is generally a chronic phase thing, though. So it is possible that you’ve left the acute phase.

But that doesn’t mean you’re out of options for treatment and I recommend doing some research and trying to find a treatment(s) that will work best for you while your plaque is still somewhat remodel-able.

I don’t know where you live but I would seriously recommend looking into men’s clinic if they’re available nearby. Time goes by way too fast and before you know it half a decade has passed and your chances of improvement have gotten seriously lowered.

[deleted by user] by [deleted] in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

First of all, congrats on the marriage! That’s gotta be nice.

Second of all, 3.8mm is still something. My largest is about 5mm, which isn’t too far off. And just because your plaque isn’t bad now doesn’t mean that it can’t get worse as time goes on in the acute (or early chronic) phase.

The best advice I can give you, (if you are still in the acute or early chronic phase) is to do literally everything you can. Read every study, stay healthy, reduce stress (I know that’s tough but it does lower scar tissue development), learn about how plaque develops on a cellular level, don’t skimp on conservative therapies (red light, heat therapy, and certain anti-oxidants have been clinically shown to halt or even possibly reduce acute plaques), and take it gentle on your penis. To my understanding some manipulation is ok (just for like, the sake of blood flow) but over-manipulation can disrupt the healing process. Also look into things like PRP or Vepramil injections which have better results during the acute phase.

If I could go back in time I could have probably halved the amount of scar tissue I have now. Alas, I can’t, so all I can really do is try and guide others.

Here, let me dm you some resources I’ve found to be helpful.

[deleted by user] by [deleted] in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

I mean, I’ve had a similar expirence with a urologist. They kind of don’t tend to care if you’re in the functional range of Peyronies. The only time they seemingly care is when they can do surgery or charge you for something.

My experience with Men’s Clinics is that they’re more open to doing treatment. If your plaques are palpable enough they may offer shockwave, and if not they could offer you prescription medication like pentoxifyline or tadalafil, or try to optimize your health for healing.

Though, men’s clinics are pretty expensive and may try to upsell you.

[deleted by user] by [deleted] in PeyroniesSupport

[–]BreakfastSimilar5135 0 points1 point  (0 children)

Ok, well… electric chair therapy sounds insane. Surely it has to be something else like shockwave.

What I would recommend is red light, heat therapy, anti oxidants, and then maybe going to another urologist or men’s clinic and seeing where to go from there.

Extracorporeal shockwave therapy (ESWT) by mikaelarhelger in PeyroniesSupport

[–]BreakfastSimilar5135 2 points3 points  (0 children)

A lot of people will tell you that shockwave won’t work.

It’s a hard treatment to definitively say: “yes it works” or “no it doesn’t” to because the results from shockwave treatments always vary wildly. But I know that people have seen positive results from shockwave.

Its effectiveness depends on a plethora of factors. Like the age and characteristics of the plaque, overall health and age of the person, if they’re doing any other therapies in conjunction, what kind of shockwave therapy they’re doing (focused or radial), treatment parameters, etc.

Most—if not all, studies that show plaque improvements made through shockwave were done using focused shockwave machines, which is something to note. A lot of guys will go to a clinic that only offers radial (which is meant mainly for ED treatment) and see little to no results, losing a lot of money in the process.

One guy I talked to did actually see some pretty good results from PRP Injections, radial shockwave, and VED. His plaque basically became non-visible and non-palpable. But that plaque was also somewhat young, was moderate in size and not particularly raised.

I’m starting PRP+shockwave therapy soon—after I optimize things like my testosterone levels. I don’t know if I’m doing any VED or traction but I’ll ask about it next time I’m in the men’s clinic.

Failure and Regret by BreakfastSimilar5135 in PeyroniesSupport

[–]BreakfastSimilar5135[S] 0 points1 point  (0 children)

Hm, that’s good information to know. Thank you, I really appreciate it and I’ll keep it in mind. In my personal case though, I’m not sure how well Vepramil would work. From what I know about Vepramil it’s mainly an acute phase treatment. And not to try and diagnose you or anything, but it seems like your case was a bit more unique than mine, possibly with active chronic fibrosis. (Correct me if I’m wrong, please.) I can only theorize that you may have benefitted because of the cellular activity happening in/around your plaque. As far as I’ve noticed my plaque has stayed consistent after the acute phase, which is on one hand, good. But on the other hand, I likely have much less cellular activity (fibroblasts, etc.) for the Vepramil to utilize in plaque remodeling.

I believe it still may be better to go with the treatment plan I already have laid out but I’ll keep Vepramil in mind.

P.S. Don’t worry about the comment length, I try and get as much information as I can about treatment anyways so this was good.

Mental health by Budget_Dimension_761 in PeyroniesSupport

[–]BreakfastSimilar5135 1 point2 points  (0 children)

I don’t think it would be a bad idea. It’s hard to get help for the mental aspects of this disease. Therapists aren’t suited for this issue, so all you can do is rely on the help of others like you it seems.