What is the best action one can take in this situation?

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peter123

Alright people know this by now but I'm so stressed out because of this disease. I'm investing a lot of time in research and obsessing about it. I just cannot wrap my head around how there can be a thick lump on my shaft that is palpable but cannot be seen on ultra sound. Here is another short clip of it, it's 100% what is causing the loss of girth and indentation. I have not had any luck of talking to a patient competent urologist on this matter at all. What can I do?

https://imgur.com/vUJLjEN

https://imgur.com/HxqhtXt

I feel like I'm doing everything, I'm taking 2.5mg cialis a day, I'm taking my 12gram of potaba, I'm taking 1200mg pentox a day, I'm working with heat and l Arginin.

I'm too afraid of ved and traction at this point. Too afraid to make it worse. Andrologist said there is nothing to see on ultra sound( I was with two Andrologist who work with peyronie's a lot not some dofus) but they could palate it and how ciudknt they when it's literally viable to the naked eye. I have no pain upon erection but when flaccid I often have this inflammatory discomfort.

I was thinking about trying verapamik or interferon injections but there is no good data on any of them.  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

Hawk

First, I cannot see the image without creating an id and signing in.  It should be posted here.

Finally, Verapamil and interferon injections are not known to be very effective.  I would inject with Xiaflex or nothing.

I would also try VED and Traction cautiously.  If the plaque IS there and IF it softens, you need some degree of pressure to stretch or reshape in my opinion.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

peter123

Quote from: Hawk on July 22, 2020, 12:27:30 PM
First, I cannot see the image without creating an id and signing in.  It should be posted here.

Finally, Verapamil and interferon injections are not known to be very effective.  I would inject with Xiaflex or nothing.

I would also try VED and Traction cautiously.  If the plaque IS there and IF it softens, you need some degree of pressure to stretch or reshape in my opinion.

thanks for your reply. here are the pictures and video

https://imgur.com/vUJLjEN

https://imgur.com/HxqhtXt

the plaque IS soft. urologist said he's glad that there is no calcification etc. I just feel like there is so little research and experience in this area, its not exactly clear whether traction can potentially make it worse or not. but after all after surgery traction is recommended and there is open wounds too so maybe it really won't hurt. Im just trying to understand what this lump is histologically. is it tunica tissue and just thickened, is it actual scar tissue, fibrosis, whatever? I think scar should have been picked up on ultra sound shouldn't it? its crazy that I have a 21 degree bend and clear indentation and you can see the plaque with your bare eyes but it can't bee seen on ultra sound. I dont understand this. I think im kind of past the point of watching an online course, I need some real professional help in form of psychiatry which I just started a few weeks ago
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

Hawk

I see a photo but no video.  What I see on the photo looks like it could be a plaque or even a vein or a thrombosed vein instead of a plaque.

I think you make a distinction between thiskened tunica and scar tissue.  I dont think that distinction exists.  

Finally, you did expound on your treatment of mental heath but did NOT answer my questions.   Also keep in mind psychiatrists are medical doctors who largely prescribe medication. Psychologists PsyD more typically are trained in counseling and things like Cognative Behavioural Therapy.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

peter123

Quote from: Hawk on July 22, 2020, 01:00:10 PM

Finally, you did expound on your treatment of mental heath but did NOT answer my questions.   Also keep in mind psychiatrists are medical doctors who largely prescribe medication. Psychologists PsyD more typically are trained in counseling and things like Cognative Behavioural Therapy.


im seeing both


well my doctor said its thickening of tissue and I dont know what that exactly means. part of the reason I made this post.he did not explain it very well and didn't have much time and patience either
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

projectpd

Hi Peter,
are these bands/lumps hard or tough to the touch? and do they correspond to the bending as if they might be anchors constricting the erectile tissue?
they might be something unrelated. I have a bend and size reduction and there are no obvious external signs like yours. They are only detectable by pressing on the penis with my thumb quite hard with a circular motion, it's almost quite subtle, not visible at all.
Age 57, Onset 2010, 2" shortening, shrinking and angulation of glans, weaker erections, 30 degree bend. Mild pain few months, but far from worst symptom. Tried many ideas, not just from here, but not consistently. Moderate improvement, maybe 40%

peter123

Quote from: projectpd on July 23, 2020, 05:56:30 PM
Hi Peter,
are these bands/lumps hard or tough to the touch? and do they correspond to the bending as if they might be anchors constricting the erectile tissue?
they might be something unrelated. I have a bend and size reduction and there are no obvious external signs like yours. They are only detectable by pressing on the penis with my thumb quite hard with a circular motion, it's almost quite subtle, not visible at all.



they are not hard but harder than the tunica. they are exactly at the point where the curvature is. they can be see with the naked eye, I posted a video  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

projectpd

exactly at the point where the curvature is (at the center of curvature) and you didn't have them before the curvature? that would seem suspicious then I suppose. it must be different physiologically than mine though, I can't see mine at all, but they are quite hard.  
Age 57, Onset 2010, 2" shortening, shrinking and angulation of glans, weaker erections, 30 degree bend. Mild pain few months, but far from worst symptom. Tried many ideas, not just from here, but not consistently. Moderate improvement, maybe 40%

peter123

Quote from: projectpd on July 23, 2020, 06:28:53 PM
exactly at the point where the curvature is (at the center of curvature) and you didn't have them before the curvature? that would seem suspicious then I suppose. it must be different physiologically than mine though, I can't see mine at all, but they are quite hard.


yes its quite obvious that they are the cause of curvature. I literally have the hour glassing too. the lump causes the indentation and 20 degree curve.  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

peter123

Quote from: Hawk on July 23, 2020, 05:49:11 PM
Peter,

I am sorry for your pain.  Your depression IS valid and I recognize it.  My suggestions were specifically to deal with the depression but those suggestions even if they were a magic cure cannot help someone who won't try them.  I very much doubt that there will be anything discussed on the Psychological Aspects Board that you would be interested in trying so you are probably better off following your plan to explore physical treatments for the Peyronies Disease symptoms that are the topic of the other boards.  It is counterproductive to just repeatedly restate your dilemma and your challenges.

Best Wishes.


you are right, I now realized I posted this in the wrong subsection of the forum. it would be better placed somewhere else, like the treatment section for example
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

Hawk

This topic contained a lot of discussion of physical aspects of Peyronies Disease so those posts were split-out into a new topic and move from the psychological Aspects Board.
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

peter123

Quote from: Hawk on July 23, 2020, 06:47:02 PM
This topic contained a lot of discussion of physical aspects of Peyronies Disease so those posts were split-out into a new topic and move from the psychological Aspects Board.

thanks man
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

projectpd

Hi Peter
I saw your video which must be quite a good idea to do.
I haven't read all of this but I can see you are  alarmed. Bear in mind only 20 degrees is next to nothing, more or less normal. But obviously something not right, As I said my Peyronies Disease plaques are not visible so not sure what to say. I have some sort of similar looking visible but less obvious structures, that I think they are not related to Peyronies Disease. I read you were nervous about trying VED and stretching? but those are fairly standard treatments unfortunately! (not that I'm great at them, that's just from laziness, not fear!)
Age 57, Onset 2010, 2" shortening, shrinking and angulation of glans, weaker erections, 30 degree bend. Mild pain few months, but far from worst symptom. Tried many ideas, not just from here, but not consistently. Moderate improvement, maybe 40%

peter123

I seriously think about killing myself this weekend. I just can't anymore, my entire life was F^@$!ng garbage and it will only get worse from here.  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

doobie3

@peter123

I think 20 degrees is extremely manageable.... even enviable by some of us. As long as it is not progressing ... even avoiding traction would be okay  I believe since you're a whole 10 degrees away from that 30 degree curvature potential distress point mark.

For improvement I would say traction isn't as bad as you may think. Of course there are risks with it but as someone who has been using restorex, I think you could benefit especially since you have no calcification.

Chin up brother! I think 20 degrees may even help you in your endeavors
22 yrs old - first noticed peyronies in June 2018, 30-35 degree curve, April 2020 - Consulted Dr. Ronald Suh - Advised against Xiaflex - Currently using Restorex Device

peter123

Quote from: doobie3 on July 23, 2020, 09:38:51 PM
@peter123

I think 20 degrees is extremely manageable.... even enviable by some of us. As long as it is not progressing ... even avoiding traction would be okay  I believe since you're a whole 10 degrees away from that 30 degree curvature potential distress point mark.

For improvement I would say traction isn't as bad as you may think. Of course there are risks with it but as someone who has been using restorex, I think you could benefit especially since you have no calcification.

Chin up brother! I think 20 degrees may even help you in your endeavors

It's curved to the left which is much worse than upward and I'm 22 F^@$!ng years old Jesus chriszm my dick is exactly 4 inches in length now. I ordered sleeping pills online today. I cnat beat it anymore I literally can't, my limit has been reached  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

doobie3

Quote from: peter123 on July 23, 2020, 10:21:45 PM
It's curved to the left which is much worse than upward and I'm 22 F^@$!ng years old Jesus chriszm my dick is exactly 4 inches in length now. I ordered sleeping pills online today. I cnat beat it anymore I literally can't, my limit has been reached

Listen.. I'm 22 years old too and I can totally see where you're coming from. We're too young for this to happen. Its unfair, we have our whole lives ahead of us and we start of with this terrible condition. What I also see is that your distress is both due to length and curvature, and I know you feel everything is a lost cause and you may be doing this since you don't see a way out but I assure you.. you still have lots of options.

I just want you to try every single thing possible before taking that ultimate step. Try traction... if that doesn't work out.. try surgery. Exhaust all your options and don't go quietly in to that good night!

Feel free to DM me if you need anything
22 yrs old - first noticed peyronies in June 2018, 30-35 degree curve, April 2020 - Consulted Dr. Ronald Suh - Advised against Xiaflex - Currently using Restorex Device

TonySa

Peter, please reach out for help.  You're severely depressed and I believe part of you wants to survive this as you're reaching out here.  It can get better, do you have anyone that's been supportive in the past that might be of help now? Tony  
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

peter123

Quote from: TonySa on July 23, 2020, 10:58:13 PM
Peter, please reach out for help.  You're severely depressed and I believe part of you wants to survive this as you're reaching out here.  It can get better, do you have anyone that's been supportive in the past that might be of help now? Tony

I have reached out. The worst is that I already had a small dick before any of this crap and was extremely depressed about it. There is no margin now. Plication for example even 1cm loss would be absolutely unacceptable. When I read about guy here being depressed because they lost so much length but they are still much longer than me BEFORE disease onset. Absolutely mortifying. This stupid crap literally cost me my sex life and sexuality.  Because I havent suffered enough from my appearance? This is such a joke. At 22 for God's sake. But no. If it gets any worse and I mean any worse, 5 degree, 10 degree it doesn't matter, then I will buy a rifle and end it rifht there. There is only so much humiliation one can bear and I have reached the maximum.  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

doobie3

@peter123

been trying to message you but your inbox is full :(
22 yrs old - first noticed peyronies in June 2018, 30-35 degree curve, April 2020 - Consulted Dr. Ronald Suh - Advised against Xiaflex - Currently using Restorex Device

peter123

THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

TonySa

Peter, I'd suggest you stop reading about Peyronie's as you have one lump and the andrologist has cleared you.  I think you're focusing on Peyronie's is exacerbating your severe body dysmorphia that you have Described.  How about finding a good support forum for that condition do as to lessen your emotional pain rather than increasing it?
PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

RichardWilson99

Hey Peter,

I am 29 and literally have the exact same nodule/harder type thing that caused a bend.  I got GAINSWAVE therapy that actually helped alot.  Traction also 100% helps, I have a "smaller" penis and traction honestly has made it look bigger.  I can't even figure out how to use restorex because my penis won't stretch all the way, so I've just been using my hand like NeoV's videos, and it works!!

You're also 22. You have time. Also as men, we can have children in our 40's, 50's etc.  Ironically I think you're in a better position than me since you actually are younger.   Please give all the options a try.  Traction/VED   WILL NOT cause any problems trust me.  Take it slow and have faith/patience.  It won't get better overnight, but if you can stop masturbating/sex, starting getting good blood flow to your penis, and start attacking that nodule through ESWT, PRP, Xiaflex etc, you're going to see improvements.

There are so many men in here that have seen improvements.  And you're young, so your body will heal much faster than all these older guys!!! Chin up buddy!! I'm in the exact same place, you gotta give yourself a chance.  Don't give up.
31/Single
Injury Nov 2019, bend 15deg, loss of erections, dent and hard-flaccid
VED, cialis 5mg on/off
EQ medium (with pills), no NTE.  Lost 1+ inches length, lots in girth. Some loss of sensation. Considering implant to restore full sexual function

peter123

Quote from: TonySa on July 28, 2020, 08:43:57 PM
Peter, I'd suggest you stop reading about Peyronie's as you have one lump and the andrologist has cleared you.  I think you're focusing on Peyronie's is exacerbating your severe body dysmorphia that you have Described.  How about finding a good support forum for that condition do as to lessen your emotional pain rather than increasing it?

?
That's not bid, dysmorphia this is not an imagined or exaggerates flaw, it's a very obvious disability sexually. Nobody has cleared me, I have been diagnosed with peyronies  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

peter123

Quote from: richardwilson99 on July 30, 2020, 02:27:11 AM
Hey Peter,

I am 29 and literally have the exact same nodule/harder type thing that caused a bend.  I got GAINSWAVE therapy that actually helped alot.  Traction also 100% helps, I have a "smaller" penis and traction honestly has made it look bigger.  I can't even figure out how to use restorex because my penis won't stretch all the way, so I've just been using my hand like NeoV's videos, and it works!!

You're also 22. You have time. Also as men, we can have children in our 40's, 50's etc.  Ironically I think you're in a better position than me since you actually are younger.   Please give all the options a try.  Traction/VED   WILL NOT cause any problems trust me.  Take it slow and have faith/patience.  It won't get better overnight, but if you can stop masturbating/sex, starting getting good blood flow to your penis, and start attacking that nodule through ESWT, PRP, Xiaflex etc, you're going to see improvements.

There are so many men in here that have seen improvements.  And you're young, so your body will heal much faster than all these older guys!!! Chin up buddy!! I'm in the exact same place, you gotta give yourself a chance.  Don't give up.

Biggest problem is the loss of girth due to the ring like tissue there. It causes severe hourglassing  
THIS USER HAS BEEN BANNED FROM FORUM FOR REPEATED RULE VIOLATIONS He never had Peyronies Disease but has body dysmorphia and his pastime was to attack all treatments, medical resources, and opinions.

HeyThereYou

I feel like we have a very similar issue, mine seems to be stabalised now though and is not getting worse at all. Flaccid pain is mostly gone now where as before it was randomely throughout the day. Been given Pentox/ Cialis 2.5mg and Larginine to take, also to use a VED device..

How has Cialis/Pentox been for you so far?