can there be deformity without palpable or US verifiable plaque?

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

porterrobinson

can this even exit? a deformity, mostly an hourglass deformity but doctor cannot palpate any plaque and see anything on the ultra sound? i read a study that concluded that doing an ultra sound on the erect penis would yield better results and better identification of the plaques? would that be worth doing even if organic Ed can be ruled out from the start already, just for diagnosis of what is even going on? what could be a reason for some fibrosis to not show up in any imaging and not show on US? is there any other medical imaging technique that could aid in superior identification?

single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

porterrobinson

for me, a normal sexual life is over. iam contimuing with life because i psychologically have matured in many ways that i understood how life needs to go on and i need to make the best out of every situation for my family friends and supporters. but its utterly depressing to be in early twenties and have an unstable penis with reocurrent indentations and what not. tohave ED at such an age. notbeing able to masturbate properly becsuse there is diffuse pain everywhere and its just too unstqble due to the indentations and painful. aggressivelyhummiliating but i try to keep going, maybe somethjng positive will happen to me down the road that i cannot even imagine right now. having a functional penis before 30 would be a huge quality of life improvement but i am not confident that it will happen. i havent had a sexual relationship in 7 years which at my age is wuite emberassing. so this happening to me last year was so f'~c<+d up. but i try to get out of this, not question it. harder said and implemented than done.  
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

GaussRifle

PorterRobinson I echo every one of your sentiments and completely understand what you are going. I am like you only 26 and can't have sex (virgin too). We are living the same lives. Like you I have indentations, no fun in even mastubation anymore. Our best bet right now is just keep positive and continue with life. It is what it is now. We can only try our best which I am doing and I'm proud  of.

We should only judge ourselves based on the circumstances we face. At the end of the day, we should ask ourselves, "Did I try my very best ?"  and if the answer yes, even if your best wasn't enough, we need to be proud ourselves.

Things will turn out the way they are supposed to in this universe and what is destined will be ours, nothing more, nothing less. We can only hope for a miracle or a new treatment one day. But you need to know you are not alone.

26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Tobyg

I liked your words GaussRifle, I also identify with your life, although the unhappiness is so great that it does not allow me to do any other activity.
porterrobinson: the doctor may not have felt your plaque, and another doctor may be able to feel it.
It can also happen that it is not seen in the ultrasound, I had plates that later "disappeared" in the ultrasound, but I continue to touch, feel and see them.
I never did an erect penis ultrasound, and I think there is another study called elastography, but it is expensive and does not make much sense to do it.
32 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.
Frequent urination.

Nolte94

It's possible, yes. One problem is time: The uro hasn't just one person per day, that's why some of them don't palpate exactly enough. At the beginning the first uro palpated 1 plaque, after 2 weeks the second uro palpated 3 plaques and I've always palpated 5 plaques. Ultrasound showed always 1 plaque...

You see, I had the same problems, but to palpate or see the plaques is not important. You feel the pain or see the curvature and THAT is the real problem. In every case you have to start treatment as soon as possible before Peyronies Disease gets worse.
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

Melko321

@Nolte94 - Sorry for barging in, but what exactly do you mean by starting treatment ASAP? I have the same problem as OP, but I don't see what to do about it except wait.
@potterrobinson - same thing here, two doctors did ultrasounds, neither managed to identify any plaques, both just told me to wait... Very frustrating, having to sit there with nothing to do, in this day and age of modern medicine, unbelievable and sad.  :(
Traction, suction machines and all that show minimal improvement, if any. I can't believe there is nothing we can do. I am even willing to try surgery.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

Nolte94

Quote from: Melko321 on July 18, 2021, 04:13:57 PM
@Nolte94 - Sorry for barging in, but what exactly do you mean by starting treatment ASAP? I have the same problem as OP, but I don't see what to do about it except wait.

I mean, waiting for having worse symptoms shouldn't be an option. I waited and my symptoms got worse. After I've started treatment, it has improved.
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

Melko321

I get it, but what treatment?

All I was prescribed were painkillers and Cialis. Is that what you mean? I don't feel any of those address the real issue, though I don't know for sure.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

porterrobinson

thanks for the responses. it seems jusg like the most ridiculous disease ever and that is also due to variety and unpredictability which is something most doctors will not awknowledge. they will talk about peyronies as if you get one fibroid, exit the accute stage ans everything is back to normal after you get either surgery or treatment. and the only deformity they awknowledge is curves. in my case, i started with an indentation and pain back in february 2020. since then the original dent has improved a tiny bit. there was no plaque detected viq palpilation neither US. then, a few weeks ago i got a new indent right below the glans also on the left side, destabilizing the entire penis. again, sadly it is not a curve deformity vut some kind of twisting and hinging coupled with a curve. when my doctor asks me avout the degree of the curve i have to explain to him that this is not the problem. most just dont get it bc frankly they dont have it themselves so they are very ignorant about it.

now over the last 12 months i have seen something verx scary happening to my penis. kind of like a total disintegration. i have these tiny valleys emerge everywhere on the lateral sides and they are symmetric on both sides kind of like a half circumferential dent. but shallow and can only be felt by touch not by eye. but when i masturbate it hurts on this area. firstthere was none, then the primary plaque caused such vallueys whoch then progressed into a deeper dent with curve.

now, i am scared that this is a ticking time bomb. some day those small vallueys are jusg waiting to disintegrate ag that spot and then ill get these indentatikns. imagine and hourglass deformity on your oenis shaft bug not one bug one every 1.5 cm. this crap is everywhere.

no doctor has been able to tell me what it is. clearly it is some disruption of tunica tissue. my erections have become worse again after improving around christmas time. i think im about to experiwnce a peyronies relapse even though my doctor said this is a disease that only occurs once.

do i have some strange genetic polymorphisms, some strange depositions for this crap to pop up along the entire penis? if these other valleys become as pronounced as the first one, i am going to require an implant. this will be so crushing at my age, not even 25. itd be the greatest nightmare i could imagine and it seems to be getting true.

even in 2021 you can not only not reverse peyronies, you can also not stop or prevent it preemptively. you can just sit there and watch. its so depressing to realize this.

and the pain, or should i rather say discomfort is equally exhausting. i have not enjoyed masturbation or any sexual activity in 15 months. its as if something was taken for me and i cannot grief. im just angry and upset all the time which further destroys my life. so i try to stop that.

but i just wish i knew what exactly wqs going on and what i can do about it instead of watching my penis atrophy like a F^@$!ng idiot
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

porterrobinson

what afe those circumferential bands and valleys associated with them that keep appearing everywhere on the penis? am i just going to have to accept that this is a slow degeneration process and that i will eventually need a penile implant or my dick will be seeded with valleys indents and hinging? and pain and tearing suring erection at exactly this site?  
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Melko321

I can only say that, being very new to all this, it is very similar to the way my multiple sclerosis worked just a few decades ago. Mainly, the motto of neurologists was "diagnose and adios".
The situation with MS has improved a lot, but with my crap luck I land on another disease that has not improved in hundreds of years since it was recognized.
I'm not sure if doctors are ignorant or just acting that way, knowing full well there isn't anything they can do. What a crap, crap, crap situation.
Male, 33, recentl diagnosed, still very confused. Taking painkillers and Cialis for condition, so far no dice. Married, no kids, suffering from MS and ED already before. Currently waiting for control to see what happens next.

Tobyg

the fault is ours for not organizing anything, the fault is not the pig, but the one who feeds it
32 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.
Frequent urination.

Nolte94

If you read the posts in this forum instead of pity yourselves, you will see that there are treatments, which can help you.

I can say that, because I had a curvature of 45° to the left, starting right under my glans. I felt pain at every time and the hinge effect made intercourse nearly impossible.
BUT I've searched for options. Not waiting or taking only supplements and maybe 1 or 2 meds. All of you can read my posts, what I've done and how and which improvements I've experienced.
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

porterrobinson

good for you. but dont talk down on other people like that, many have actively done their research and tried every treatment there is, manx dont see any change and sone even experience worsening with it. with your progress you are 1 in a thousand you have to understand. its not pure determinism and agility that got you the improvement but rather some of it and then luck and of course genetics and the nature of the disease. also the nature of deformity, curve has a much better outlook than diffuse indentation deformities all along the shaft
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Nolte94

Which treatments have you already tried seriously? Many men who have Peyronies Disease try different treatments and don't bring up the patience and continuity.
I worked hardly to get these improvements and I have/had 5 plaques all over the shaft and not only the one curvature.
I don't talk down other people, I just try to help you, but doing nothing isn't an option.
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

Mikel7

We live in a society that wants it now.  Peyronies "therapy" here is all about patience and time.  Traction and VED is all about time.  This is a marathon and not a sprint.  If you have trouble with waiting then I suggest you improve that first then tackle peyronies yourself.  Most Dr's are clueless about this and their advice is useless at times.  Read the survival guide as this has more helpful information in it that most Dr's don't possess.  
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

porterrobinson

people acting as if there arent studies and mountains of anecdotes of these treatments either not working or even making things worse. theyd rather blame the sufferers and already beaten down patients then the industry that collectively decides to not do any non BS research into this common and vicious disease. they act as if everyone here is just complaining and never trying anything when most have but with neglegible results. they extrapolate, unjustly so, from their own experience and case and circumstances to that of others. its really sad  
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Nolte94

Quote from: porterrobinson on July 26, 2021, 08:20:07 AM
people acting as if there arent studies and mountains of anecdotes of these treatments either not working or even making things worse. theyd rather blame the sufferers and already beaten down patients then the industry that collectively decides to not do any non BS research into this common and vicious disease. they act as if everyone here is just complaining and never trying anything when most have but with neglegible results. they extrapolate, unjustly so, from their own experience and case and circumstances to that of others. its really sad

Not all people. This forum is full of people, who need answers and people, who have answers. I repeat myself: I have experienced improvements in erection quality, curvature, pain and penis size with a multimodal treatment (= combination of the most recommended treatments for Peyronies Disease). It's sad, that many urologists don't have any idea of what to do with patients like us, but being sad and doing nothing is no option!
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

porterrobinson

last week i have had my appointment j have waited for so long. i had made a list of questions that i was going to ask my Dr and i had many concerns as ED has worsened significantly and there is a whole array of symptoms that are hard to define. basically there is these small cave ins all over the place, flaccid it looks like bands circumferentially and erect its these verx minor indentations and carves. when i masturbate they hurt. and my theory is that they will eventually all turn into indentations and hourglass deformities. under the glans circumferentially, i can feel some kijd of band. its really weird, like a vein vut always exactly where the indentation is. i have aquired a new indentation right below the glans. i seem to hsve reduced girth in that area and i have verx poor sensation during masturbation because it just feel wqsted away at that point. someone cut out a piece of penis.

my entire dick is destabalized. naturally it is narrowing towards the base which is quite uncommon and obviously bad to balance out weight and forces. this is what i was born with. then i got an indentation with a minor curve on the left side. this made it unstable to the point where i would not have sex especially not with a woman on top. and now right below the glans. my dick is basically unusable. if the hottest most desireable woman would approach me i literally could not have sex properly with this penis. and its getting worse becsuse these other dents are not staying the way they are now.



so i went to mx appointment, waited over an hour despite having a time set up, he let me in, it wasnt even my doctor but some young assistant urologist. i was so perplexed and he was so weird to me that i couldnt ask him all my questions. he gave mr the impression that i am not wanted here, that i am using up his time to dissappoint another 15 patients and after quick palpation he told me that ED cant be organic becsuse venous leak does not exist and that it has never been proven in studies and blablabla. it wws such a dissapointment.


i didnt even get an ultra sound. we didnt even have time to talk about the VED that i should be using but couldnt due to issues i had with it etc


what am i supposed to do. it has become clear to me that there is nobody that can and more importantly wants to help me.


i try to keep my head up. but honestly im suicidal over this. i literally cannot practice sexuality anymore. its utterly depressing. i could never end my life but i think aboht it, a lot in fact. if i need to deal with this in therapy i want to at least know what i am dealing with and not this damn uncertainty whether my penis is literally wasting away and falling apart. i hear patience, patience and how this is a marathon but its been close to two years and its gotten nothing but worse despite all the treatment attempts i have made.
its not like anybody is going to read this long ass text anyway.
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Anbil

I just had this issue,

drove 6 hours to see a urologist, he did an ultrasound and said he saw/felt no plaque.

I've been experiencing pain and curving on my left side going on for months now with a loss in girth.


A previous urologist said he palpated and felt a plaque but didn't do ultrasound/ was not a peyronies specialist.


Both urologists pretty much said nothing works aside from traction. One is saying there is a plaque the other is saying everything looks 100% healthy.
Onset of pain in March 2021
Progressed to loss of girth to dent under the glans left side

Been doing daily heat,traction,pentox,ved,cialis since initial onset of pain

Currently still experiencing pain and dent unchanged

Nolte94

In my history of visiting different urologists, I experienced quite the same. I tried a few supplements and Potaba, but that didn't help me. I maybe wasted 4 months until I've begun with the multimodal treatment. Since mid January I've experienced improvements in erection quality and curvature. All you need is written in this forum. You don't have to experiment or visit many urologists.

At first you have to accept, that it needs time! With patience and continuity you can start treatment, but don't think, you can cure this disease in 3 days. The progression and time from acute to chronic can be up to 2 years, that's why you should stay patient.
26 years old, first symptoms since August 2020, 45° bend to the left, hinge effect and pain at the beginning
‐---
Daily Tadalafil
Traction with PMP
VED with one cylinder
Acetyl-L-Carnitine, Tensiologes, Coq10 and healthy food
----
Only 5-10° left 🥳

porterrobinson

but many people have adviced against the proposed treatments. many have said to get worse from traction and my dr also recommended against it bc it could actually make things worse. this can be found ALL OVER the forum. why can you not understand tgis, that you are just N=1 and thus cannot extrapolate on how other people will fare with the treatment. i have had a second indentwtikn and many more to come on completely different areqs of my penis. that means, i musz have some weird kind of tunical thickening everywhere along the shaft. its all become extremely unstable and irritated, id have to be an absolute madman to apply traction forces for hours a day to this tissue.

i just want to understand what i need to accept in therapy. the current state? constant worsening? constant uncertainty? this is so mad. its one of the worst diseases in existence and among the non lethal ones it is high up there in terms of anxiety inductance and debilitation. that is not just due to the nature of it but tk everything around, from dopey urologists that need to take a book and go bsck to school to the unpredictability of it all.


honestly ill probably see a different one and actually pay for an MRI or some crap. i will force them to fibally do this crap doppler US, what is up with underdiagnosing people, arent they earning money by doing these tests? its like their resistance to help their patients is even higher than their incentive to earn money(what most doctors are in it for, quite obviously, next to the overblown social prestige)  
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

nemo

I actually get your pain. This disease makes every one who suffers it feel utterly alone, and in many cases, unable to see any light at the end of the tunnel. I can tell you, I've battled Peyronies Disease three times before in my life, and am currently battling it again. I'm just as scared and anxiety ridden this time as I've ever been - maybe more so, because this time I have pretty much constant inflammation sensations/soreness, and my erectile performance is suffering from the restricted blood flow, even using Cialis. I dwell on the worst case scenarios and wonder how long it will take to play out.

But I would say two things to you. First, three times I've had Peyronies Disease and three times I've recovered and felt my penis was great. I do not know if this will be the time that "gets me" but experience has shown me, it doesn't always go "worst case scenario." You very well may improve in time. I know it's excruciating to have to wait though.

Second, the inflatable implant is the "nuclear option" end game that is in the back of all of our playbooks. I have read countless stories of guys who used this option, even in their 20s in some cases, and have zero regrets, will never worry about Peyronies Disease again, and frankly are liberated, forever, from any worries over ED. They have an erection on demand, for as long as they want, and many say their partners don't even know they have a device implanted unless they tell them. It is viable option that, at the end of the day, we are lucky to have available to us.

So please, I understand the depression. I understand the anxiety. I even understand the thoughts of ending it all. But think about these points I've made above. There is hope, and there are options. It's cruel that you're having to deal with this, I know, but the healthiest thing you can do is somehow accept "I'm going to do all I can do to fix this, and if, ultimately, my attempts all fail, then I will find the best implant surgeon available and do what I need to do to take back control of my life."

I hope this helps, if even a little.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

Mate, please re-read my post. There are men with severe Peyronie's who cured their problem with an implant and are having the time of their lives with it - your forum moderator Hawk is one.

Would you rather have an infallible, ready-on demand erection that never fades, distorts or falters and is more than a match for any woman you meet, or would you rather end your life in the midst of Peyronie's and never know the joys of "superhuman" sex and regained confidence.

Think of all the women who have artificial breast implants solely for cosmetic purposes. Think how happy they are, with no shame or doubt. Then think of yourself, bettering what's been dealt by nature. Coming out of it with an amazing biomedical device. There are men of all ages, including injured war vets, whose lives have been changed for the better by these devices. You deserve every advantage they do.

It would truly be a tragedy to never give yourself that chance. I understand where you're coming from, but I will never go there without first trying literally everything.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

nemo

porterrobinson, I've seen you reference some guys (including my own) age as if we somehow don't suffer with Peyronies Disease as much as you young guys. As if we have had our fun and somehow it's less tragic when we old farts get Peyronie's than when you young guys get it, and it's no big deal if we have to pack it in. I can tell you, I got Peyronies Disease the first time at 31. I have it again at 50. Same same. Do I "want" an implant at 50? Not any more than I wanted one at 31. NO ONE WANTS an implant, except the man who has no other alternative. And when he accepts his situation, and betters his condition, he has risen above it.

The question you have to ask yourself (as do we all) is are you going to rise above this, or let it subsume you?

I sympathize with your pain, but not with your attitude. You don't deserve this, and neither does a man of 50, or 92 in Old Man's case. Every single one of us wants love and sex. Every one of us deserves love and sex. To be deprived, at any age, is unfair and tragic. One day, you will realize how young 30, 40, 50, etc. can feel.

I feel for your pain. I even understand the chip on your shoulder. You're dealing with something painful. But with age and wisdom, I hope you will learn not to treat those who are trying to help you like morons incapable of understanding your plight.

Nemo  
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Pfract

Hey Toby.... whilst you are entitled to your opinion i don't think you are seeing the success stories of every guy that installs an implant on this board.

IF you continue to see things like that, if the time comes that you will need one i think that you will suffer a great deal by not going that route. These are just my two cents

Tobyg

Pfract: There are also success stories with circumcision and happy people, and I wish I hadn't, it made my functionality much worse like many people, I have extensive research done (late) that supports me.
I will never leave my penis in the hands of urologists with something irreversible and invasive again, I respect your decisions and maybe I will miss something good.
32 years,injured at 25.
Slight curve, narrowing and retraction in flaccid and semi-erect.
Loss of sensitivity due to peyronie and circumcision  moderate erectile dysfunction, pain.
I improved the pelvic floor with kinesiology.
Frequent urination.

nemo

You take a 22 year old woman with tiny, misshapen breasts, and she gets breast implants and feels like a new woman, with confidence and attitude. All her friends celebrate her "boob job" and she feels like life has just begun anew.

You take a 22 year old man with a debilitating penis condition and he rejects a penile implant (which is apparently even harder to discern than a breast implant) as somehow unacceptable and freakish.  

I guess I just don't get it.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Stabler

@Tobyg @Porterrobinson

You are certainly entitled to your opinion on implants however this forum is full of success stories from men that have been living with Peyronies or E.D for years, and while some may have had hesitance at first are very happy with the choice to have it done. The men in this form aren't trying to MAKE YOU have an implant, the information they are sharing is simply to let others know of how they dealt with their problem. If implant is not for you then fine but don't come down on those who chose to.

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

porterrobinson

full of men twice or thrice our age. thatsconveniently left out. and no, that does not mean i down play their struggle at all but its a completely different scenario there
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Stabler

I don't see how it is different, your men with the same problems with the same body part, why is it different because of the persons age? Peyronies and E.D are still Peyronies and E.D if your 20 or 70

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

nemo

Explain to me how it's somehow more "acceptable" to have an implant at twice or thrice your age than it is at your age?

Do you think if I were to get one at 50, I wouldn't have the same concerns as you when about to date or sleep with a woman I'd never slept with before?

You have this myopic focus on how bad it is to be young with Peyronies Disease and seem to think it's somehow better when you're older. I can tell you, having had it at 30 and 50, it's no easier now than it was the first time I battled it. Same fears. Same grim view of the road ahead. Same anxiety.

Whatever, you can think what you want and feel what you want, but every time you make these comments it's really pretty offensive to the only group in the world who understands what you're dealing with.

There are men your age losing limbs in war, receiving a prosthesis and standing proud. I've never heard one of them say, "this would somehow be easier if I was 55 instead of 25." A leg is a leg. A penis is a penis. A man is a man. Your bitterness is not helping you.

Nemo

51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Mikel7

Quote from: nemo on July 29, 2021, 09:22:36 AM

There are men your age losing limbs in war, receiving a prosthesis and standing proud. I've never heard one of them say, "this would somehow be easier if I was 55 instead of 25." A leg is a leg. A penis is a penis. A man is a man. Your bitterness is not helping you.

Nemo
Very well stated!  I have known several of them and their life did not end.
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

porterrobinson

I want to apologize if i come or came off as dismissive. that is not what i am trying to be and i know that everyones struggle is unique and being older does in no way mean that this cant be a huge issue and challenge, at any age.

I do not think it is a controversial opinion that it is indeed somewhat more acceptable to have sexual dysfunction at an older age and thus also more acceptable and "normal" for the lack of a better term to have such a device implanted as treatment. also the need to do revisions and the associated complications with it are much higher in a younger man as well.

some valid thoughts i have however, if a guy at 70 who had a sexually rich life behind him, had all the right sexual experiences at the right time, is at an age women are much less demanding and more accepting, less casually orientated, less libido, at an age where his peers are also more commonly suffering from these issues, and he is not a total outliner in terms of functionality, he may even have an understanding long term partner with a long marriage behind him and maybe he can look back at a long life of sexual pleasure. this all makes a difference in my opinion. and of course not everyone has that no matter the age. and that is why age is not the only determiner how awful this can feel.

But i find the statement "why is it different because of the persons age? Peyronies and E.D are still Peyronies and E.D if your 20 or 70" a little misguided to be honest. it is quite a difference(which does not mean its not a challenge at any age!) for the reasons i just laid out and because at 70, it is less common to NOT have Erectile Dysfunction while at 20 it is highly pathological. as much as the 70 year old feels invalidated, i do when someone says i am in the same boat with someone for whom these issues are a normal part of life due to natural aging. but anyone can have their own opinion and thoughts on this

It is actually not my interest to determine who has it worse because everyone has their own demons and battles and if it sometimes comes off like that then i apologize. I try to get away from this "who is me i have it worse than anyone, debate me" attitude and i sometimes need to be called out on that, i think it is of bad character and hurts people.


you seem to have the impression that i am completely ignoring the fact that this disease is a struggle at any age. I totally understand you pain and am not trying to invalidate it at all.  of course it still sucks when you are older and in your case particularly because you weren't exactly old at 30 at all. and there is many more factors playing into it anyway. so i totally understand your pain and feel for you. i am not trying to debate anyone here especially not you because i have read your posts, Nemo and i think you have made some really great and wholesome contributions to this forum. also you are not exactly the age group i was talking about. its never fun to hear someone try to downplay your struggles. why would we even fight over this, what would be the point?

Peyronies sucks at every age but i wish people would stop suggesting implants as if it was a viable solution. to me, an implant is not a better solution at this point of my life than having total dysfunction. its a different situation but its not really any better to me and my overall outlook on this all and how i perceive my own sexuality. this may very well change as i grow older but that also does not mean i have not right to feel bad because there is some "solution" that i am just not willing to take. ignoring the fact that nobody would ever do surgery on me anyway as i have only mild Erectile Dysfunction and the most bothersome issue is the hourglassing

i wont say id rather lose a limb than get an implant or peyronies but i think the two situations have their unique challenges and its completely pointless to compare what is worse and what is not, it helps nobody, that is something i can agree with.



single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Benraycamp0

Quoteignoring the fact that nobody would ever do surgery on me anyway as i have only mild Erectile Dysfunction and the most bothersome issue is the hourglassing

I'm so lost bud... your signature line clearly states "severe Erectile Dysfunction". Has it been improved?

I get your case about implants too. But tbh, and please tell me where I'm wrong, is the reason you don't like implants because you know deep down you don't need one? And that your main issue is that your penis has minor changes to it but you can have sex if you wanted to, BUT you choose not to because you can't accept your penis anymore?

Im really sorry in advance if I'm missing some details here bud. I don't mean to accuse or to make you feel bad. Im really trying to wrap my head around what's going on with your case. I've read many of your posts and I see a lot of contradictions. Can you be explicitly clear what your current symptoms are? Mild deformity (20 degree bend) and mild Erectile Dysfunction DOES NOT require an implant. In fact, you mentioned in another post that cialis gets you erections fine!

So OF COURSE you should hate implants! Why wouldn't you? You have a functional penis (that you don't like) and have Erectile Dysfunction solvable with pills. Trust me bud, if you could not get an erection and masturbate/have sex with it successfully, you'd love an implant. Nobody else needs or should want an implant unless you cannot have successful sex.

But that's beside the point. The main question you need to answer, is why you can't go have sex with your functional, but slightly deformed penis? That's all that matters. And I know you want this to be a physical issue, but right now it's more psychological.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Stabler

@ porterrobinson

I see you modified your post, I feel that it is presumptuous of you to state that men and women that are older have a less sexual appetite, that they dont "need" it as much or as often as people in their 20s. I also see that you have changed your mind about how you would rather losing a limb and need a prosthetic than having an implant.

The information being posted in this forum on implants is simply that, information based on those who have had one. You need to stop comparing the age of those giving information and look at just the information given about the implant process.

Stabler
Moderator since 2015- Missouri- I work in the medical field and have strong knowledge of insurance and how to obtain coverage for medication and other treatments. Being a woman I do not have Peyronies but you can ask me anything. I am happy to help.

porterrobinson

nobody i can ever tqlk to about this, nobody woukd ever undertqnd it to suddenly have instability and denting all over the penis. but because i can physifwlly penetrate its all psychological of course. i cwnnot derive any pleasure out of my dick anymore and thwts all that matters to me, even if people are trying to dismiss it
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

porterrobinson

benraycamp you hwve no clue how mich i suffered over the last 15 months from constant worsening deformity, inferior erections in addition to an already pathological body image you would write no such things suggesting anything is psychological. how does that make me feel? it makes me feel bad. i do have psychological issues but that does not mean that these orgamic chamges are and my peyronies probelms are neither. i have started with a straight normal penis and ended with 20 degree left with indentation, instability, poor erections for my age, a dick not even 5 inches long, it looks so pathetic. and now when i thought it eas over a new indentation appeared below the glans, pain, soreness and significant loss of girth. i hate how my dick looks, i despise how t feels, and with the added instability there is no way i am going to have sex with that pathetic organ. but ik just putting on an act anyway, i dont need an implant, im probablx just some deranged guy that has a normal functioning(thats what the dopey doctors say so they dont have to treat you) penis so all is well and i should not feel depressed at all


and stabler, it seems like you are putting much effort into not understanding my point and i will not argue with this as my time is too valuable for that
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

GaussRifle

I want to step in and add my opinion -  I am in the middle ground of this debate.

1) Fact is indentation and hourglassing does cause more bother than curve as I'm a guy with indentation myself that makes me think my penis Is unstable.

2) Fact is peytonies at any age is BAD but is WORSE when younger. This statement doesn't take away from the pain or rough time older people go through.  As PorterRobinson mentions, if you look around in your 60s or 70s when a lot of men around you are suffering from Erectile Dysfunction or Peyronies, you don't feel alone. Your spouse is more likely to be forgiving even if their sex desire is intact because she knows and expects men that age to have such problems.
3) Fact is you can either have sex or not. If you are able to have sex and satisfy your partner great ! If you have erectile issue along with hourglassing or curve then you should consider implant. I DO NOT understand the tone of considering suicide but not trying an implant.

Porter, you dint understand benraycamps remark about it being physiological.  He is not denying that the deformity is unreal . He is only asking if the physiological distress caused to you prevents you from sex more than the deformity itself. We are just trying to help each other out.

Anyways, the goal of this forum is to educate people about potential treatments. No one is forcing anyone to go under any procedure. You are free to do as you wish. You know the treatments out there currently... you can pick one now or hope for a miracle by waiting years. The choice is yours.  The original topic is getting out of scope and there is no point arguing.
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

Benraycamp0

Quotenobody i can ever tqlk to about this, nobody woukd ever undertqnd it to suddenly have instability and denting all over the penis. but because i can physifwlly penetrate its all psychological of course. i cwnnot derive any pleasure out of my dick anymore and thwts all that matters to me, even if people are trying to dismiss it

I hear you man. And I sincerely wish you one day look at your situation differently. But as you said, you agree that none of us on here can ever understand what you are going through, yet I am a 26 year old who also has a new curve in my penis and GaussRifle is also a 26 year old with a significant downward curvature, currently undergoing Xiaflex. But you choose to want to be alone in this. I hope you just realize you aren't alone man. But we can only help you if you want to hear it.

If you've decided 100% that your sex life is over and that nothing will change it other than rewinding time and being born with a different penis, I'm sorry man but we don't have a solution for that. And an implant WILL NOT help you with that.

I think I can speak for myself and GaussRifle (both 26 year olds who are also going through changes in our penis) when I say that we're gonna do everything we can in our power to get better and to get the relationships and sex life we want. If that means surgery, so be it. If that means getting over the psychological hurdle of changes to the penis, that means going to therapy or whatever you need to do to get there.

Would I prefer to get my old penis back? OF COURSE!
But you know what I think I'd regret more after a few years? When I look back and think that I should have just continued using my functional (BUT deformed) penis and making the most of the life that I have.
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

porterrobinson

congratulations on your functional penis but mine is far from functional. why am i even arguing, saying you understand it doesnt mean actually doing so. if you case in minor and you have no functional issues that is great. i do have functional issues, the hourglassing is the worst, id kill to just have a curve seriously. its honestly painful to realize that most just dont udnerstand. gaussianriffle does i think being the exception here. i have these small indentarions all over my penis. this is worse than i could have ever imagined and my greatest nightmare. and here you come along with your psychological hurdle bs and just use it bro when i know i cant even masturbate properly. itdrives me so crazy i just think about jumping off a cliff or on a train track
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Benraycamp0

Sorry man, just trying to help here. I'll leave others to assist since I'm probably not understanding things correctly.
Hope you find some peace soon man 💕
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

nemo

Quote from: porterrobinson on July 29, 2021, 12:40:34 PM
I want to apologize if i come or came off as dismissive. that is not what i am trying to be and i know that everyones struggle is unique and being older does in no way mean that this cant be a huge issue and challenge, at any age.

I do not think it is a controversial opinion that it is indeed somewhat more acceptable to have sexual dysfunction at an older age and thus also more acceptable and "normal" for the lack of a better term to have such a device implanted as treatment. also the need to do revisions and the associated complications with it are much higher in a younger man as well.

some valid thoughts i have however, if a guy at 70 who had a sexually rich life behind him, had all the right sexual experiences at the right time, is at an age women are much less demanding and more accepting, less casually orientated, less libido, at an age where his peers are also more commonly suffering from these issues, and he is not a total outliner in terms of functionality, he may even have an understanding long term partner with a long marriage behind him and maybe he can look back at a long life of sexual pleasure. this all makes a difference in my opinion. and of course not everyone has that no matter the age. and that is why age is not the only determiner how awful this can feel.

But i find the statement "why is it different because of the persons age? Peyronies and E.D are still Peyronies and E.D if your 20 or 70" a little misguided to be honest. it is quite a difference(which does not mean its not a challenge at any age!) for the reasons i just laid out and because at 70, it is less common to NOT have Erectile Dysfunction while at 20 it is highly pathological. as much as the 70 year old feels invalidated, i do when someone says i am in the same boat with someone for whom these issues are a normal part of life due to natural aging. but anyone can have their own opinion and thoughts on this

It is actually not my interest to determine who has it worse because everyone has their own demons and battles and if it sometimes comes off like that then i apologize. I try to get away from this "who is me i have it worse than anyone, debate me" attitude and i sometimes need to be called out on that, i think it is of bad character and hurts people.


you seem to have the impression that i am completely ignoring the fact that this disease is a struggle at any age. I totally understand you pain and am not trying to invalidate it at all.  of course it still sucks when you are older and in your case particularly because you weren't exactly old at 30 at all. and there is many more factors playing into it anyway. so i totally understand your pain and feel for you. i am not trying to debate anyone here especially not you because i have read your posts, Nemo and i think you have made some really great and wholesome contributions to this forum. also you are not exactly the age group i was talking about. its never fun to hear someone try to downplay your struggles. why would we even fight over this, what would be the point?

Peyronies sucks at every age but i wish people would stop suggesting implants as if it was a viable solution. to me, an implant is not a better solution at this point of my life than having total dysfunction. its a different situation but its not really any better to me and my overall outlook on this all and how i perceive my own sexuality. this may very well change as i grow older but that also does not mean i have not right to feel bad because there is some "solution" that i am just not willing to take. ignoring the fact that nobody would ever do surgery on me anyway as i have only mild Erectile Dysfunction and the most bothersome issue is the hourglassing

i wont say id rather lose a limb than get an implant or peyronies but i think the two situations have their unique challenges and its completely pointless to compare what is worse and what is not, it helps nobody, that is something i can agree with.

porterrobinson, I'm just getting back to this thread, but in this post, you make some very clear and understandable points, which I can appreciate. If you would make all your posts this thoughtful - as opposed to angry and with a chip on your shoulder - you would find this a much healthier place to get the same kind of support we all come here for. Thank you for taking a moment to breathe deep and put some thought into your words.

Nemo
51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

porterrobinson

single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

Winter

Probably it wasn't that exchange that made you feel bad but your condition and the way you are dealing psychologically with it. No one denies the fact that this is a cruel disease that destroys our spirits.

But I also hate how young men on this site keeps firing at older man as if they were more entitled to have it or less allowed to complain. This whole argument, even if not formally declared, sounds mean and cruel, but it is extremely common to see here. It doesn't matter the age of the man, we all only live in the present. It doesn't matter the fact that I had a satisfactory sex life somewhere in the past. I can go back and visit that moment in the past other than in my mind. Which would only leads to depression. We only have the present and on my today I always wake up with a very sore erection and two huge dents of both size of my penis. There is no easier "today" because I had an easier past I cannot live anymore.

I urge to all young folks to stop focusing your sorrow and bitterness to fellow peyronie's suffers of any age. It hurts, it doesn't help and it is also completely unproductive.

In order to improve your condition you should make a very cold and rational assessment of your condition, what it can be done and what are the pros and cons of each way. Also to establish some limit measurements of worsening and/or deadlines that would require extreme actions.
Also to strengthen your mindset to face some tough solutions, like practicing VED and traction daily, with discipline and commitment and for several months.
For example, I am psychologically preparing myself for a 7 day fasting in order to test if it helps. I am also taking cold baths and practicing Wim Hof breathing exercises daily. Whatever it takes, even if in the beginning doesn't show promising. Perseverance is the key on this nasty disease.

By the way, I suggest reading the last post from Tortão on his implant journal. Maybe, after the first terrible first months of recover, that extreme solution might not sound that bad after all.

41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless