Odds of spontaneous recovery at a younger age?

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ConcernedandWorried

So I've read that the odds of spontaneous recovery are pretty low (13%). Wherever I've seen this, it is not qualified. Does that mean complete recovery, where the plaques disappear? A return to roughly the original state of the penis? I've never seen it stated in concrete terms.

My real question, as someone who is 26 and in relatively good health, is whether the odds of this spontaneous recovery increases at a younger age. I've noticed from some of the studies I've read on the topic, that the progression and characteristics of the disease are different in younger men, sometimes in ways that are familiar (younger men are more likely to experience lateral curving, as opposed to dorsal, which fits my profile exactly). Are there any positive ways in which young men are likely to differ?

I'm 7 months in, and was still regularly experiencing pain on the plaques. This has only worsened after a secondary injury caused by an inexperienced sexual partner. I'm worried that time is running out for any healing to take place, considering that the only instances of spontaneous resolution on the forums I've read occurred relatively quickly (1 month, 3 months, etc.).  

jim morrison

It is going to heal but you will be left with a scar. Peyronies is the presence of scar tissue that wreaks havoc. You aren't healed from Peyronies unless the scar/plaques disappear. I think the odds for spontaneous recovery are slim when the Peyronies was caused by an injury rather than a natural case such as Dupuytren's contracture. But I think it is still possible. Obviously, the younger you are, the better chance you will have of spontaneous recovery. I remember seeing an hour glass affect every now and then in my early twenties and I just ignored it. They key is recognizing it and make sure not to injure it again. It has been 2 1/2 years since my injury. It wasn't till then that I even knew what this disease was. But the awareness has helped. I have used caution and it has actually gotten better over time I think. I think that proper care and keeping down inflammation can actually lessen the scar tissue over time. It is a work in progress for us all. Abstaining for a week at a time is a good place to start. It will introduce more blood to your penis. In theory, over time, it can carry away the unneeded scar tissue.  

ConcernedandWorried

Can the scar tissue not dissolve or disappear during that initial acute phase? What defines the acute phase, then, if the scar tissue is permanent? I mean, what am I taking L-Cartinine, L-Arginine, CoQ10, Pentoxifylline and Cialis for if this is permanent? Am I just hoping to remodel the tissue and hope that I only lost an inch instead of several? I really had hope that at 26 some kind of partial recovery to 80 or 90% of where I was would be possible.  

jim morrison

You are taking that stuff to try to limit the scar tissue that is building up in the healing process. The acute phase is the time it takes for the scar to form. It can take up to two years for the scar to mature. Some say that you can manipulate the scar tissue by stretching and VED but from my experience, it is not smart to do it in the acute phase. Every time I tried it, it caused more inflammation, which is basically further injury and more scar formation and longer healing time. I would abstain from sexual contact and promote good blood flow and just leave it alone until it heals all the way.

ConcernedandWorried

What I want to know desperately is, in the studies, when they speak of the lucky 10% whose symptoms self-resolve, is that a complete recovery?

What is the prognosis for people in their 20's? Can anyone comment on this?

I can't seem to find any information on what happens with young people, and what it actually means for someone to resolve the majority of their problems. Is it possible to conserve the grand majority of my length and girth?  

Werther

Peyronie's disease is actually the Tunica Albuginea's inflammation and its name is used improperly to address the plaque (which is not the disease by itself, but only the result of the actual peyronie's disease - i.e. chronic inflammation of the tunica albuginea -). That's why, in my opinion, those studies that mention spontaneous resolution are talking about inflammation rather than fibrosis, so that, according to them, in some cases inflammation resolves on its own, but fibrosis - if there's any - will stay where it has built up. It's like hepatitis and liver chirrosis: the first causes the second and while you can actually get rid of hepatitis (with drugs), if your liver is already totally scarred you'll have to get a transplant if you want to survive, even if you don't have any hepatitis anymore.

Gabriel

Concernedandworried,

Man, bad news: no, you can not rely on your case to be part of the "miraculous 100% recovery". Understand it, accept it, deal with it.

On the other hand, good news: if you are young, healthy and aware of your condition (which you are), there are a lot of very efficient actions that you can (and must) undertake, and that have very high chances of limiting your disease progression to something that won't obliterate your sexual life for the next decades:
- Abstinence from masturbation ; soft sex only once in a while until the acute stage is over;
- Traction (PMP) +VED (Augusta's 3 cylinders);
- Oral treatments: pentox, cialis, coQ10, arginine/citrulline, ALCAR, bilberry, propolis, gotu kola, vit. K12, Glisodin, zinc (...);
- Topical treatments: H-100 if you can go pick it up in the US;
- Better diet (low carbs, high fat);
- Sport (weightlifting + cardio);
- Quit smoking, start meditating (and see a shrink if you're willing too; it's doing a lot of general good)
- Eventually injections, such as PRP/HA or verapamil, that can in some case help stopping your acute phase and the spreading of the disease.

--> So, please stop being "concerned and worried", and start being "active and determined"! I know what it is, I'm certainly not judging you, just trying to help you move forward faster towards a much better personal state -and yes, that exists!

Cheers,

G
- 35 yo, Peyronies Disease with chronic pain, general hourglassing with girth and length loss since 09/01/17.
- Pain almost cured with Hirudoid cream and diet/lifestyle changes (see my topics on this); deformity still here, but partly reduced with traction + VED.

ConcernedandWorried

Okay, but what is my best case scenario? Can I regain any length or girth? Or am I essentially trying to limit the losses to retaining something useful? Again, I am confused by the lack of qualifications provided when describing differences in prognosis by age. A lot of the pessimism and cynicism, coupled with extreme physical losses, comes from people who are much older than myself. Is there any hope at all?  What I am finding frustrating is that there seem to be almost no stories of success in treating this condition, and where there are, the details are often few in number.

For example, NeoV's case seems to align with my own in age. He says he regained most of his metrics, and halted the progress of the disease. In numbers, what is that? A complete retention of his original length and girth? Acceptably minor losses in mm's? I can't seem to find it.

So when people speak of success, and plaques disappearing, they only mean that the fibrosis is halted, not reversed?

What has me so furious and despondent in this moment is that my symptoms involved no appreciable loss in girth or length when erect, until only a few days ago when an inexperienced partner injured me by brusquely grabbing my penis with her hand. I was perfectly happy with waiting until the stable phase, and continuing on with my life, mindful of not re-injuring my penis. Since this event, it appears that my erect form is considerably affected. Since fibrosis is permanent, does this mean my losses are also now permanent?

It is driving me equally mad that I can't seem to nail down what efficacy can be expected. What am I even aiming for? An acceptably mangled penis, significantly less than what I had before? My original question was intended to find an answer for what the best case scenario is. I'm not making any assumptions that I will reach it. All I want is a target for optimism, so that I do not commit suicide.

Frankly I am finding it hard to accept that I must anticipate tremendous losses. More than wisdom, I'm seeing here a lot of projected pessimism, and I don't see how that is meant to help.

Werther

Quote from: concernedandworried on October 03, 2018, 12:42:59 PM
So when people speak of success, and plaques disappearing, they only mean that the fibrosis is halted, not reversed?

I personally don't believe to anyone claiming to have seen their plaques disappearing by sticking to oral and physical treatments that are commonly used for peyronie's disease (pentox, verapamil, coq10, vitamin E, any other supplement you can think of, VEDs, traction, etc.): if that was even possible, how come thousands of men still choose to purchase graft and/or implant surgeries? Are they all stupid? These surgeries would all be useless if you could reverse fibrosis with drugs, supplements and/or mechanical devices. As a matter of fact, at least based on my understanding, there's no way as of today to reverse fibrosis (except for surgeries) and in fact nowadays it's still a lethal condition if it affects vital organs (such as in IPF or scleroderma)


Quote from: concernedandworried on October 03, 2018, 12:42:59 PM
All I want is a target for optimism, so that I do not commit suicide. Frankly I am finding it hard to accept that I must anticipate tremendous losses. More than wisdom, I'm seeing here a lot of projected pessimism, and I don't see how that is meant to help.

If this forum is thought to be informative (like I hope it does), it should just give you realism and the real fact is that there's still no cure for this crap. Hence no optimism. Just think that its own founder finally went down the implant route after creating the forum more than a decade ago and this tells a lot with regards to the progress that this community has made in promoting more reasearch and more reliable (and acceptable) clinical options for the patients.

However I don't think you necessarily need to panick and commit suicide because there's currently no solution yet. Based on your posts, I didn't get the feeling that your case is that desperate: you didn't even mention ED problems, nor you have talked about curves, deformities or pain so pronounced that you can't have sex anymore. If that's your situation and if I was in your shoes, suicide wouldn't even brush my thoughts. And I'm not telling you this because I want to judge you, but to try to give you the optimism you're searching for here. And I'm telling you this as someone who's your age and who's dealing with this crap (coupled with pretty bad ED) from years so far.

jim morrison

To answer your question, if you would be one of the people with spontaneous reversal, well you would probably not have any symptoms anymore. So that would be the best case scenario. You would have no fibrosis or anything. You would have no peyronies disease. You don't hear of those cases because there is no need for those people to even log onto this site. In regards to the true definition of peyronies, if you go to the doctor with a bent penis, they are going to diagnose you with peyronies whether you have inflammation or not. We don't want you to commit suicide. People are just trying to be honest with you according to their own experience and trying to give you honest advice. I think that if you can handle this disease, then you can handle anything. It can actually turn you into a stronger and even better person in the long run.  

ConcernedandWorried

I'm not expecting or banking on spontaneous reversal occurring, I'm just curious if that even happens, if only because it is implied in the medical documentation and what seems to be a few ambiguously worded "success stories" I've seen while searching the forum here.