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Author Topic: Re-activated Pain  (Read 254 times)

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hoopman

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Re-activated Pain
« on: April 08, 2021, 09:23:44 PM »

Has anyone ever re-activated their scar tissue before? As in, can you go from stable back to the active phase? I have been stable for almost 2 years now, had no pain and was totally fine. But about a month ago during sex something must've happened because I've been in pain since. It feels like it is in the same place my original plaque was in (my original scar tissue). This original plaque was inflamed when I was first diagnosed and than went away. It came back and I can now see it.

I have been back to the doctor to do ESWT - which has been the only thing to ever help my pain. So far it is helping which I am very happy about.

But I have been wondering..is it possible for your scar tissue to revert out of the stable phase and back into the active phase?
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Mikel7

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Re: Re-activated Pain
« Reply #1 on: April 09, 2021, 06:26:45 AM »

The thing with peyronies is that it is like an invisible monster - you don't know where or when it will show up and how much damage it will do. So you have been stable for 2 years and believe it has been re-activated? Originally did you have an ultrasound to see what was going on? I would get an ultrasound done first to get a picture of what was going on. Yes peyronies can come back.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

hoopman

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Re: Re-activated Pain
« Reply #2 on: April 09, 2021, 08:48:43 AM »

Yes, had an ultrasound which found the scars. Went through treatment by my uro. i've been debating whether to go back to the uro or see if the pain settles down. I've had periods where I am in pain for a month and than totally fine. Was just curious is scar tissue can just 'flare' so to speak.
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porterrobinson

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Re: Re-activated Pain
« Reply #3 on: April 09, 2021, 11:17:18 AM »

my doctor an andrologist at a university clinic having done numerous trials on xiaflex disagrees with what mikel has said. i wonder who is right then? he said peyronies is a strange disease but you only get it once in your life, as it is an auto immune disease the body learns to not overreact with scar tissue next time you have a micro injury and thus, it wont "overreact" again. where is the evidence that peyronies can "come back"? are there any studies on it? what should i tell my andrologist next time i see him?
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single, mid 20
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indentation 20 degree bent to left and now very severe Erectile Dysfunction for weeks
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hoopman

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Re: Re-activated Pain
« Reply #4 on: April 09, 2021, 12:52:02 PM »

Interesting...over the years (4 or 5 of them) I've slowly gotten more scar tissue in different spots. None of it has been painful but it slowly shows up for me.
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porterrobinson

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Re: Re-activated Pain
« Reply #5 on: April 09, 2021, 02:25:05 PM »

so this i think is not peyronies disease then. usually in peyronies disease you dont continously get scarring. why would you, what sould cause the scarring? that would be insane.
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left and now very severe Erectile Dysfunction for weeks
tried vacuum device with no success

Mikel7

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Re: Re-activated Pain
« Reply #6 on: April 09, 2021, 03:38:22 PM »

Peyronies disease is just a broad term which means a healing disorder of the penis.  You can read countless articles from Dr's and also read articles here.  They say "get it once in your lifetime." Yes, but that does not define how the disease takes its course.   Everyone knows what the acute stage is - pain and deformities.  Read some more of the members first hand experiences here to know that this disease can flare up out of nowhere,do damage,  then go silent for a while to flare up later.  Who is right then?  I would love to hear about a urologist who has had peyronies to get their personal professional opinion. I'm sure if they came down with it they would become a member here.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

porterrobinson

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Re: Re-activated Pain
« Reply #7 on: April 09, 2021, 05:24:51 PM »

so you think urologists and andrologists just make crap up then? also i guess there is a difference between an existing plaque flaring up and a new one being created, one thing not exluding the other? for example i have a bend to the left in the middle of the penis and based on my doctor i will not get a new plaque on a different area down the road because the body has "learned" what an appropriate immune response is and will heal the wound better next time. he said you can still get scar tissue and peyronies from an actual penile fracture but not a micro fracture which is thought of is the most common trigger for peyronies disease. he seemed quite knowledgeable having done and lead a clinical trial on xiaflex himself so he must have seen many peyronies patienst surely.

i asked him that since i am young and got peyronies surely i must be very genetically prone to it. he said dont worry you only get this once in your life and once you enter the active phase its over, the body has learned to not repair micro tears with excessive collagen so i should not get it again down the road unless i actually fracture my penis.

now i have read the diaries on the forum myself. the course of peyronies from my understanding IS well defined, an active phase that lasts 6-18 months and then a stable phase with stable deformity. i cannot find literature of patienst getting reocurrent peyronies again and again as time progresses sheerly out of nowhere.



it has honestly been super annoying for me because this forum has trigger some incredible anxiety in me before i have talked to my doctor about this as it is describe and as you have described it in your comment it must be the most vicious unpredictable and comical disease ever. based on said description you can never feel at emotional ease because the disease can "trigger" at any moment, your entire life is basically ruined at that point if you are a young man. but the clincal occurence is not like that i understand. i

ts not like it can flare up out of nothing and never stop getting worse. active phase IS a thing and constant worsening must have other causes than peyronies otherwise this would have been picked up in the medical trials?


there is not one clincal study ever done that suggests you can go back from stable to active phase. not one. personal accounts on the internet have zero value sadly because anyone can write anything on the internet without it ever being verified.
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left and now very severe Erectile Dysfunction for weeks
tried vacuum device with no success

hoopman

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Re: Re-activated Pain
« Reply #8 on: April 09, 2021, 05:49:59 PM »

so this i think is not peyronies disease then. usually in peyronies disease you dont continously get scarring. why would you, what sould cause the scarring? that would be insane.

No..it's totally peyronies..been checked by my doc. Throughout my entire peyronies existence I have had more scars which pop up. They've been minor and not bothersome, but I can feel them. This new scar or old scar that i have, whatever it is, is unfortunately bothersome.
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porterrobinson

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Re: Re-activated Pain
« Reply #9 on: April 09, 2021, 06:06:48 PM »

so you just get scar patches all over your penis until its full of fibrosis everywhere? this sounds very uncommon for peyromies disease. you are also still very young, i wonder if you carry any risk factors likr diabetis? otherwise i coukd not explain it. btw these plaque all been verified by a duplex ultrasound?
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single, mid 20
diagnosed early 2020
indentation 20 degree bent to left and now very severe Erectile Dysfunction for weeks
tried vacuum device with no success

Hawk

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Re: Re-activated Pain
« Reply #10 on: April 09, 2021, 06:44:58 PM »

If you have new plaque then you have new deformity.  It can work no other way.  If there is a new section of your tunica that can no longer stretch and expand then you have a deformity.  If the plaque is distributed on both sides so it does not bend then you have significant size loss. 

Once again, plaque causes size loss.  Size loss on one side is a curve/bend.  Plaque distributed around your penis means significant size loss without a bend.
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Mikel7

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Re: Re-activated Pain
« Reply #11 on: April 10, 2021, 05:05:40 AM »

If you have new plaque then you have new deformity.  It can work no other way.  If there is a new section of your tunica that can no longer stretch and expand then you have a deformity.  If the plaque is distributed on both sides so it does not bend then you have significant size loss. 

Once again, plaque causes size loss.  Size loss on one side is a curve/bend.  Plaque distributed around your penis means significant size loss without a bend.

      Exactly.
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Lump April 2020, age 60 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.
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