How am I reading posts from people saying their scar tissue/plaques have disappeared after a few years if it doesn't really ever go away?
Does it eventually go away or is this it? And if it does, does that mean function returns as the scar tissue goes away ?
Nothing ?
I believe it can shrink w treatment and sometimes "go away" by completely remodeling.
Scar tissue maturation takes 2-3 years to happen. Aggressive use of penile physiotherapy through Phalson forte would help you in speeding up the process of scar maturation along with cialis pills and tumric for inflammation
I feel like I'm some sort of an alien when I read these posts because mine hasn't shrunk in the slightest (scar tissue I mean, not my penis, which has...) 18 months and I've been doing traction, ved, taking supplements, Cialis, Viagra etc...
I think it can depend on havin the real "peyronie's disease", the organic one, or just having a badly healed trauma or fracture that created curves and hourglasses
What do you mean organic or the real peyronies?
I have no curve or bend just severe ED shrinkage and numbness.
I don't believe to any word said by anyone who claims to get rid of stable scars with the use of drugs and/or supplements. It's not possible; not as of today. That's why people with lungs, liver, heart fibrosis or scleroderma still die nowadays. There's no difference for penile fibrosis: they all are scarred tissues.
Saying that you can prevent fibrosis from worsening is a whole different thing and it's actually feasible, but I've never heard of fibrosis removal (except for surgical one).
This really is hopeless isn't it?
I'd be grateful if I had an injury that actually did cause a curve but not affect my sexual function but it seems like I have got the crap end of the deal... I have severe ED and no idea what it causing me to have no sensitivity and no pleasureable feeling in my penis. Its literally just dead.
A porn star could have it on a plate for me and I wouldn't feel a thing.
Who deserves this crap man. Nobody.
Not sure what you mean by scars. Plaque is broken down when xiaflex is successful and remodeled w other treatments such as traction. Calcification may be impossible or nearly impossible to improve without surgery.
I wouldn't even be considered for xiaflex anyway as I don't have a bend so that's out of the question
I think that is retarded but hey. I'd rather have a bend that o could correct with traction than the symptoms I have but oh well...
In the early stages I refused to believe that this couldn't be fixed but every day I'm starting to realise that there's pretty much nothing that can be done no matter how much money I spend or faith that I have... I'm not getting better, just worse.
Haven't even had a diagnosis yet either. FML.
@Tsanchez12369:
I mean fibrotic scars. By the way, while it's true that xiaflex should eliminate fibrosis (at least localized and "superficial" one, such as peyronie's, dupuytren's and maybe ledderhose's), it's not proven to restore function (i.e. sexual function in our case) and this should be the gold standard for any real and effective antifibrotic drug in my opinion. In fact, xiaflex is proposed as a viable treatment only for curvature (and only if it's over 30 degrees) and this fact alone proves how much researchers really know about peyronie's disease: it's not just a matter of curvature (you can also have none of it - e.g. fibrosis is only in the septum -), there can be loss of size, girth and ED and those last symptoms must be addressed too; collagenase is useless for those, as far as I know. So the point is that we still lack of real antifibrotic drugs capable of restoring scarred tissues to their original form and function.
Traction, VED and low dose cialis may also remodel the plaque.
It wasn't asked if the plaque can be remodeled, only if it can disappear. The answer is no.
If it's remodeled into healthy tissue, isn't it gone?
What does that even mean? Fibrotic tissue is always non-functional tissue, wherever it is in the body, and modeling doesn't turn it into a functional one (or a "healthy" one, as you call it).
,
scar tissue is just collagen, which is the structural component of our soft tissue such as skin and the tissue inside the penis. Normally it forms a nice orderly matrix that can stretch and return to a relaxed position very easily. When there is damage and inflammation, you get broken broken collagen strands. The body reforms the broken strands, but instead of reforming the old orderly matrix it forms in a disorderly pattern which can't flex along with the rest of the normal tissue. Think of it as a several bunji cords attached to a door. When the are all attached in the same direction the door can be opened with force all the way and reclose normally. You can do it over and over. Now think if one of the cords got all knotted up with another cord, the door couldn't open nearly as far. Same exact bunji cord, just in a bad configuration. XIaflex is an enzyme that dissolves collagen. It gets injected into the plaque to dissolve the strands and weaken them. We then put a lot of pressure on the weakened collagen with traction and remodeling, thus breaking that twisted disorganized ball up and the body repairs the plaque properly, thus the plaque is technically gone and replaced with new collagen.
Thank you for your input. I read that you had xiaflex injections, so you're surely more informed than me and others on this subject. If you don't mind, I would like to ask you if xiaflex can help with ED when it's caused by the plaque. According to your words, it should, since "the plaque is technically gone and replaced with new collagen"; but why do I read everywhere that ED makes you not eligible for xiaflex treatment? Maybe things aren't as simple as you describe them. What do you think?
I believe xiaflex is ruled out if ED prevents intercourses and is not responsive to treatment (VED, pills, injectables) and in that case an implant would be required to address both ED and peyronies.
Yeah, we all know what the protocol is. I just want to understand why xiaflex is denied, if - with modeling - it's able to turn scar tissue into functional tissue, as it's stated here. If peyronie's ED is caused by the lack of subtunical veins occlusion, because of the anelastic plaque, xiaflex should be helpful in restoring erectile function, shouldn't it? I'd like to hear betterbend's opinion on this.
I understand it only improves the curve and maybe hourglassing, not ED. Has anyone had ED improvement after xiaflex-would be interesting to hear if so.
IMHO, Xiaflex is not useful for ED because it aims to reduce an existing plaque, but the core of the plaque itself is still there. So the tissue is still anelastic. It would be needed a treatment that TOTALLY eliminates the plaque and fibrotic tissue and regenerates the penis.
Maybe, xiaflex + stem cell may be useful for that purpose. But EHY! this is only my opinion, and i'm a newbie in this disease.
I don't see any hope anymore, don't even know how I haven't gone crazy yet but I'm still here, trying to think it will sort itself out...
Can't believe how much my life has changed in the space of a year and a half, I really can't.
I know these are just rants and words aren't even worth it anymore because nothing can undo the damage that is already there my last option is an implant which will cause more loss of length and girth and tbh, I don't have the money.
I feel like I'm in a catch 22 because I can't kill myself (even though I want to) because my family love me but I can't live like this either. I want what I had, an intimate relationship and to feel good about myself.
What to do ?
To Sonnyjim,
Stick with us in the forum and use us for support.
Stabler67
sonnyjim, i'm 24 , so we are about the same age.
It's frustrating, i know, but we are young and our hope should be that, in the future, a cure may be on the market.
The technique which i use when i'm frustraded and overwhelmed is to check the clinical trials, the drug developmental section, and to search for something new that someone is experimenting. It looks ridicolous, maybe, but i feel updated on the medical research and i feel i'm active in this disease, instead of being passive.
Kind regards
It's true what is said though that when pills do not work (Viagra, Cialis) what can you really do? Just accept you need an implant and will end up even smaller than you are already?
There's not really much else to try. I mean I am trying pentox now but I think it's too late and I haven't read anything about it improving ED once pills do not work anymore.
Plus my lumps are so fkn hard that I can't imagine them softening or shrinking now. Can pentox soften scar tissue or plaque that is already rock solid? And if it was calcified wouldn't it have definitely shown on ultrasound or MRI?
I don't get it unless they did one or both of the tests wrong.
Hey betterbend! Could you please give us an answer on your experience (and your opinion) with xiaflex and erectile function? Can't you see that here people wish to die? Come on, save some life!
Weather, I documented my Xiaflex experience in a string I started inthe Xiaflex trial and treatment results area. Just to recap, I had 2 rounds, 4 injections of Xiaflex, with traction using the Andropeyronie. Unfortunately my upward curve actually measured slightly worse, although my slight left curve went away. I have a theory as to why that happened, but overall my doctor felt it wasn't working for me. He left me the choice to continue if I want, and I think I will try the last 4 injections in the fall using the Restorex.
I consider myself one of the fortunate Peyronies sufferers because, I never really had ED issues, although I was not getting fully hard prior to treatment. MY erections have improved, and I use sildenafil more often. Also, my curve has not prevented my from having sex, although there are positions I avoid now. Again overall I feel fortunate.
I don't fully understand the relationship of ED and Peyronies. Perhaps there is nerve or health tissue damage in the more severe cases, causing ED? I am sure there is some psychology involved with stress. I imagine it's a multifaceted problem.
FRom my experience traction has definitely improved my erection quality, maybe Xiaflex has helped too, I don't know. Research shows that traction can improve erection quality.
SOrry I can't provide more insight into ED. I feel for the guys that have to suffer through that too.
I know that you opened a thread regarding your experience with xiaflex, but I don't remember if you wrote about erectile function too. Thank you for sharing your experience by the way.
From my point of view, peyronie's related ED depends on the size of the plaque (i.e. how much it messed up blood circulation in the penis). Based on your words, it looks like xiaflex is pretty useless for ED. If it wasn't, you wouldn't have to take sildenafil anymore (you said that you're taking it more often). This confirms what I stated before, regarding xiaflex being unable to turn scar tissue into "healthy" tissue.
Well as I stated Xiaflex overall has not been effective for me through the first four injections, so I could not say that if it worked for curve reduction it would still not work for ED. Somebody who suffered both and had successful experience with Xiaflex could provide a different perspective. My issue for using sildenafil is the hour glassing. That are tends to not get as hard as the rest of the penis and thus is weaker. I sometimes use sildenafil because i get better uniform hardness. I still get nocturnal erections almost every night, and can get pretty hard, so I dont know how much is physical and how much is mental.
My thoughts on this is that Xiaflex, along with traction and modeling, should reduce plaque size and improve ED scores. However it didnt really work for me. Xiaflex weakens and destroys collagen, its really the body that would repair correctly to lessen the scar.
As far as traction goes, the theory is that traction causes controlled microtears on the tissue, especially the plaque area and the body responds with increase cell proliferation thus repairing the collagen correctly in the area. A plaque is a scar, same as you would get on your face if you had an injury. When you get a small, not very deep cut, the body repairs that area and in a few weeks you never even know that you had an injury. When the cut is much larger and deeper, the body fill it in with collagen, but does it in a disorganized way, and that area becomes inflexible and you see a scar. A good stitch job by a skilled plastic surgeon brings the existing tissue as close together as possible so that the body dose not need to produce a lot of collagen for repair and the scarring is much less.
If I can soften this lump won't some of my function come back? My ED only got very bad (pills not wprking) after the lump got rock solid.
Can pentox even soften it now (1 1/2 years after)
Anyone have results from pentox with scar tissue that's been there for 1 1/2 years? Anyone have an improvement with ED?
Sonnyjim, your mailbox is full, let me know when emptied as I want to send you a personal message please
Paul :)
I've deleted some messages...
Honestly, my symptoms seem different to most people here and I can't really explain why but it's like I have no feeling left whatsoever. No pleasurable feelings I mean, I'm just numb.
Whether that is because of where the scar tissue is, I dunno, but I'm not having much success at getting past this whatever it is.
My plaque/scar tissue disappeared away after a few years. No treatment. Curvature remains.
I'm wondering if I can somehow soften or shrink the scar tissue that is there, would my function come back too? I have severe ED which must be caused by the scar tissue as I have had everything else checked.
Anyone help me out? Or am I screwed?
Your question seems a bit strange to me. All of the therapies we suggest on the forum is to either stretch, lessen, or soften, or remove the plaque/scar.
Can star tissue still be remodeled/all size regained after long time?
It is difficult to say as every one is different. Usually after some time the scar calcifies. This means it hardens to a point where it is very difficult or impossible to reverse.
How can you tell if it has calcified? How long does it usually take? I have had these problems for 1 1/2 years is it possible that I have calcification?
18 months is already possible. The only way I know to tell for sure is an ultrasound by a doctor. There you can detect calcification.
I'm just worried that I will have another ultrasound and they will tell me there's nothing wrong again I mean they must of got something wrong if i am able to feel lumps and they don't show up on it.
How accurate are ultrasounds really if they never have an explanation as to why these lumps are there if they aren't scar tissue
The ultrasound is accurate.
It depends on the doctor capability to understand the picture/real time results
James
James, you said pentox worked for you after 3 years? What did it actually do to improve your situation? Did the scar tissue soften or shrink ?
Can you feel a click when you touch your bump? I can feel a click with mine
Yes, I can. It's rock solid.
Doing pentox, ved and Cialis to try and soften it like others have said. Before when it was soft or just forming, I still had good erectile function and spontaneous erections, strong morning wood and sensation was normal but now after a year and a half all of that has gone to crap.
No spontaneous erections, no morning wood, sensation is almost completely gone. No pleasurable feeling in my penis and it's constantly turtled. I hope that softening the plaques can make my erectile function better how it was before but maybe that's wishful thinking.
Yeah I have the same symptoms. Before when I first injured it I had the same symptoms then after years of l arginine and coq 10 and sometimes cialis softened it up. Also one time I masturbated I heard a crack and I think it was the plaque that broke up, after that my penis felt alot better until I refractured it... now I'm back in hell.
Is it healthy to masturbate or not to masturbate when were like this? Because I cant feel shut and my penis is constantly turtles and uncomfortable. Should I masturbate or not?
Yes, masturbation brings blood flow...all good unless painful then back off until comfortable.
in my very personal experience, which i won't say it is certain nor can't i be shure about it (expecially because i am no doctor), erection is super helpful, while any stress i add to the shaft might bring inflammation. so i advise you to be be really really carefull not to do anything that causes you to inflammate the scar and start or feed the fibrotic loop. You have to find the balance, i am struggling right now with it!
Will this scar tissue eventually lessen or shrink if I continue pentox, ved, cialis, l citrulline etc.
I just want my dick to hang normally not turtled.
@Sonnyjim, I can't tell if our scar tissue will eventually shrink. I hope so. Anyway, for hard flaccid and turtling, I found something that helps. It's a little tricky at the beginning, but you get used to it and it eventually works (I'm having 75% to 100% less hard flaccid the days I use this protocol): Pain and hard flaccid reduction - Might have found something helpful - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,10214.msg96410.html#msg96410)
--> Note that for HF the most effective component of this ointment seems to be the tanacetum annuum.
Right now I'm still working on EO combinations with weekly experiments... found a lot of stuff for flaccid pain/HF reduction, but nothing that helps with pain in erection or plaque reduction yet, grrrrrr
QuoteWhat did it actually do to improve your situation?
QuoteDid the scar tissue soften or shrink ?
I answered those questions many times:
* 3 hourglasses disappeared
* Gained back some length & girth
James