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Author Topic: The Only Way For Me To Beat Peyronies Is...  (Read 285 times)

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Andy_75

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The Only Way For Me To Beat Peyronies Is...
« on: June 23, 2021, 10:45:53 PM »

...to stop caring.

I have convinced myself of that. I thought I was in the clear but it has been a slow and steady descend, very gradual.

The dorsal bend is not terrible but I have a little line right where the little bump is that goes across my penis and at that point, the penis is very weak, I guess maybe this is what they refer to as the "hinge" effect.  Like when I have an erection, it is bendable there along that somewhat indented line, I have only very gently touched it, never forced it.

I don't see any treatments for this, if I had sex or masturbated beyond touching the glans, I would probably snap my penis.

It totally sucks.  I am middle aged, single, just out of a long term relationship.  It has been 6 months, yet it has slowly but very gradually, continued to get worse.

I am just going to try and look at this as like someone who loses the use of their penis from being paralyzed, only fortunately, I have the use of my legs and can still use my bowels etc.

No more pictures, obsessing over it.  I just need to try to accept it and stop caring and just come to terms that sex is over for me.  As hard as that is to write and say, I think it is the only way to move on with my life.  There are worse things and to say "I will stop caring" is one thing but putting that into practice will take a lot of time I am sure.  I may seek out a therapist or something.  I am depressed and anxious as anything but seriously, it is just time to try and let go after 6 months of obsessing over this and accept it, I suppose.

Short of me being in the 10% who have spontaneous remission, I don't see any treatment that can help me, a dent/hinge/weak line across my penis that makes it unstable along that section is just awful.

No pain.
No Erectile Dysfunction.
But any attempt at sex would likely end up snapping my penis because of that weak sort of hinge across me penis which makes the penis pliable.

What a horrible disease, but as I said, there are much worse, as I keep telling myself.

Sigh.  Sometimes life really sucks and you just need to accept the cards you were dealt and move forward.

You may see me back here lurking around but I am not even going to look at my erections for the rest of the summer until September maybe at the 9 month mark.  I need to stop torturing myself with the obsessing/checking.  Who knows how bad it will get.

Currently take L-Acetyl Carnitine and some other natural anti-inflammatories.  Cannot take anything that messes with blood pressure (due to existing medical reasons) which throws 95% of meds/supplements out the window.

I stopped and thought for a second today, that I didn't have sex for the first 18 years of my life and they were some great years.  So...that is how I need to look at this.

This past week it has hit me hard and I have drank every night which I never do.  Just 4-6 beers per night but that is not a road I want to continue down, so tomorrow it stops and I go back to my healthy lifestyle and make some further changes.

Good Luck to all of you, hope you can find treatments or if not, accept this terrible disease and move forward.

Thanks to Hawk for creating this space on the internet for men who have the unfortunate experience of having to deal with this awful disease.

Best,

Andy
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).

Hawk

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #1 on: June 23, 2021, 11:30:37 PM »

Andy, forum rules state that each member only gets to start one topic in the introduction board,  After that, you have to post on the appropriate boards on the main forum.

For that reason moved your post.
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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

GaussRifle

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #2 on: June 23, 2021, 11:35:08 PM »

I don’t know why you need to accept this condition. I have read about nolte on this forum where he mentions rigorous traction with pmp got rid him of the hinge effect, moreover to fill in the dent and provide structural support you can get extra tunical grafting done to provide structural support to prevent buckling and hinging and add girth. If all that fails, you can even get an implant like some of the people on this forum. But you are giving up now ?
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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.

Kobegianna

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #3 on: June 23, 2021, 11:47:24 PM »

Just wanted to say that what you are going through and rationalization is exactly what I am goi g through too. I know people keep saying implant implant implant but it is still a huge step. I would suggest keep fight for a couple years and see where it goes. Then if need be implant it is.
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Andy_75

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #4 on: June 23, 2021, 11:53:56 PM »

Yeah, I mean clearly, I don't want to go "monk" as they say, but honestly, surgery?  Not even sure if it is covered up here in Canada, carries definite, serious and certain risks and just can't see myself with an implant...that is not a shot at those who have an implant and are content with it but I don't know guys, I don't think I would ever be ready for that step.  Perhaps my outlook will change in the coming months or years but it's not like I want to give up, it's just circumstance.

I know for sure if I even attempted sex or any type of masturbation, "buckling" would be a huge risk which could lead to penile fracture...that is what I am dealing with.

As I noted, I will definitely still take the Acetyl L Carnitine and other supplements that have been purported to sometimes "help" and I will also keep my healthy lifestyle with exercise and good diet but short of a miracle in terms of being one of those who experience spontaneous resolution, I just think part of my mindset, for my sanity, needs to be acceptance.  If it was a curve with good rigid erections, that is something I would try to treat but the "hinge", risk of "buckling" and "dents" really put me in the minority, so not only do I get a rare penis disorder but I also am lucky enough to not just get an abnormal curve but also a dent/wasting/hinge...very frustrating...to say the least...plus, who knows the extent, I am only just 6 months in so not sure how bad it will get, definitely has not "stabilized" so to speak...
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).

Kobegianna

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #5 on: June 24, 2021, 12:27:45 AM »

Have you even tried traction or ved? People swear by it. I’m trying on and off haven’t seen to much change. I actually seen no change. But still doing it because what else can we do??
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Andy_75

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #6 on: June 24, 2021, 12:43:48 AM »

No, I have not tried that and would not due to risk of buckling and further injury.  From what I understand those are good treatments for curvature etc, but not for dents/wasting/hinging/buckling...I am glad they have helped some people with their curvature.

The only other thing we can do is live a healthy lifestyle, take the recommended supplements that have had *some* success in *some* trials and really aside from hoping for the best and the off chance that you are in the 10% where Peyronies spontaneously resolves, we can just try to accept things, the same way a paralyzed person accepts that they may never walk again or have sex again.  I am just trying to be a realist.  I am not giving up but rather, facing and trying to accept what is quite likely, the inevitable...I no longer want to have the mindset of denial or false hope and having this obsessively consume my mind and mental state.

Quote
“Some people believe holding on and hanging in there are signs of great strength. However, there are times when it takes much more strength to know when to let go, move forward and then do it.”

^Not easy.
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).

RichardWilson99

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #7 on: June 24, 2021, 02:18:53 AM »

From basically february 2020 - february 2021 I saw no improvement. And then randomly I started getting NTE, filling out, and straightening.  I was doing VED, traction, L-arg, cialis. So give it time and see where things are. I bet you're improving, you just don't notice it yet. I had a hinge and it did get better through time and VED/Cialis/traction, but it doesn't necessarily lead you back to your old penis which leads me to...

Acceptance is the only way to move forward. You'll begin to feel better through acceptance. There's tons of information on this forum with a variety of experience, so you really aren't alone.
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30 yrs old & Single.
Dent/twist @ base/right/underside of penis. 25 deg down/right(Nov 19).
VED, coq10, cialis 5mg (Sep 20)-improvements
Setback from masturbation-(Apr 21)
Lost ~1 inch, however better erections with PDE5
Added PMP-traction -(May 21)

Mikel7

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #8 on: June 24, 2021, 06:48:54 AM »

. So give it time and see where things are. I bet you're improving, you just don't notice it yet. I had a hinge and it did get better through time and VED/Cialis/traction, but it doesn't necessarily lead you back to your old penis which leads me to...

Acceptance is the only way to move forward. You'll begin to feel better through acceptance. There's tons of information on this forum with a variety of experience, so you really aren't alone.
  I agree completely!  Then move forward.  Do you know that alcohol is a depressant. I'm not knocking a drink now and then, but it sounds like you've had a binge.  Don't give up.  Why would you want to when there is the possibility that tomorrow things will get better.  If you need to see a therapist then do it.  I really think you should try traction/VED.
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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.

markdubby

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #9 on: June 24, 2021, 07:11:37 AM »

I had a dent at my first scar that gradually is going away with traction and VED, and a dent at my second scar which i assume will go away as the scar starts breaking up.

these treatments work, they just need a lot of time, patience and a positive mindset :)

also starting ASAP is quite key, as suggested by Dr Trost.
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30, discovered ~20-30 degrees right bend beginning of Feb 2021. Small plaque under gland on right side of the shaft

300 mg COQ10, 2-3 g Acetyl-L-Carnitine, , 6-8h traction daily with pmp,

new scar 26/04 on left side below glans, current curve < 5

Andy_75

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #10 on: June 24, 2021, 08:46:44 AM »

Thanks a lot for the words guys, it means a lot!
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).

PeyroniKirai

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #11 on: June 24, 2021, 11:07:15 AM »

Hey Andy_75,

I know you've had a number of responses already from guys who know more than I do about the various treatments.  I too am afflicted with Peyronie's, although to be fair, my condition so far is not as bad as what you describe.  Still, I understand that sad, empty feeling when you remember what your penis used to look like and how it used to work, and you compare to how it is now.  When I dwell on those thoughts, which happens at least once a day and usually more, I feel like I'm being pulled over a cliff.

And this is what I want to address.  You have resigned yourself to the fact that your condition won't get better by itself.  However, you have also concluded that "sex is over" for you, and I want to point out that this is simply not true.  It's true that without some sort of artificial assistance, you will look like a "stud" and you won't be able to bang a partner really hard, like most guys have loved doing at some point in their lives.  But that's not the only kind of sex there is, and it's also not the only way to make a partner happy.  There are many forms of delightful intimacy a man can enjoy besides powerful penetrative intercourse.  There are of course plenty of men of all ages who can't do that anyway, Peyronie's or not.

You are doing the right thing to accept and not obsess.  These are rational, healing things.  And you say you might seek out a therapist - another excellent idea.  There is nothing "sissy" or sick or even weak about seeing a therapist.  In various Asian cultures, instead of seeing a therapist, people see a guru or a sage or a sensei.  In the US that role is fulfilled by a therapist - someone who has wisdom or experience that can help you.  You should therefore feel that seeing a therapist is actually an act of great strength.  This is because the first step to true strength is admitting that you are weak, just like the first step to knowledge is admitting that you are ignorant.  To recap, your acceptance of the condition, your effort to stop obsessing, and your inclination to get professional help are all positive, strong, and constructive steps.

As for the consuming of four to six beers a night, this is just purely self-destructive -- especially if you are drinking alone.  Like other posters here, I am not anti-alcohol and I do enjoy one drink most nights, but that's about it really.  What I've found has really helped me both mentally and physically is getting back into a regular program of vigorous exercise.  My personal favorites are cycling (I live near mountains) for cardio, and body-weight exercises on a mat in my living room (they have lots of fancy names but most of them are just variations on sit-ups, push-ups, squats, and stretches).  I got myself into a bad trend with drinking too much, but the exercise saved me, because now my body simply doesn't crave alcohol like it used to.  This is a matter of training -- it will take time, but if you train your body to love exercise, your body will do its job and stop loving a drink quite so much.  It's mind over matter at first, and then it becomes habit.

So please, as you struggle with that sad emptiness of remembering how a glorious erection used to look and feel, walk away from the cliff edge.  Resist the temptation to booze up, and instead connect with a good trainer who will help you put together a fitness program that works for you.  Slowly but surely, burn away fat, build muscle, reduce drinking, and treat yourself to that therapist too. 

Once you rebuild your mental and physical health, confidence will return, and you will be ready to explore intimacy with a sexual partner who does not demand powerful penile penetration.  Just a few thoughts which I hope will help you navigate the next few months.
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Age 60, Peyronie's history 10 months, left side hourglass, 20-degree bend to left, no Erectile Dysfunction

Kobegianna

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #12 on: June 24, 2021, 12:48:05 PM »

For all the people that say they did traction and ved for awhile and suddenly saw improvements later on. What’s to say that it was the traction and ved that caused the improvement and not just time and spontaneous recovery?
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34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

Benraycamp0

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #13 on: June 24, 2021, 01:17:30 PM »

@Kobegianna:

No one knows for sure on any specific case! I think some cases are more clear than others - for example, those who had deformity for months/years and then began traction and saw improvement. If someone suddenly developed a deformity and began traction within a short period of time and saw improvement, then it's hard to say whether their deformity would have resolved by itself.

But I think the key point here, and to tie it back to Andy's reservations about starting one of these mechanical therapies, you will never know until you try! And I don't believe you have to do it for so long either. If you don't respond to consistent traction within a reasonable time (2-3 months), it most likely will never work and you should begin looking at other options including Xiaflex or surgery as appropriate.
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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.

Hricco

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #14 on: June 24, 2021, 01:34:35 PM »

From basically february 2020 - february 2021 I saw no improvement. And then randomly I started getting NTE, filling out, and straightening.  I was doing VED, traction, L-arg, cialis. So give it time and see where things are. I bet you're improving, you just don't notice it yet. I had a hinge and it did get better through time and VED/Cialis/traction, but it doesn't necessarily lead you back to your old penis which leads me to...

Acceptance is the only way to move forward. You'll begin to feel better through acceptance. There's tons of information on this forum with a variety of experience, so you really aren't alone.

I agree with Richard.  acceptance.  I have done it all too.  VED, traction, Heat.  Im at a point were it feels stable.  My GF and I have good sex. I use Viagra though.  I have a bend about 12 Degrees.  Slight twist to the left

And once i realized that sex was still good, and this was the new me, I honestly stopped the traction and VED.  I have seen no changes since.  Im always in fear of a random injury, or the disease changing in some way.   But i do contribute the stability at this point to traction and VED as well as HYPERthremia...Heat therapy

Im 46.... onset of the disease was Feb 2019 stabilized around Dec 2020   Traction and VED plus Cialis/ and Pentox, for the last year.  so close to 2 years battling, and im to a point where im ok with it.  You can get to that point too
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Andy_75

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #15 on: June 24, 2021, 02:01:17 PM »

Thanks again guys.  Great thoughts/suggestions and words of encouragement.

Hawk,

You really have created a “brotherhood” here and never did I expect so many to reach out.  My OP was about acceptance/frustration and trying to move forward.  Again, I didn’t think it would render many responses but to my surprise it has.  For that, I am truly thankful.

Guys,

As some have noted, it really does just takes time to accept the new “us”.  I do already eat healthy and exercise and the drinking will stop.  As stated in my OP, I am not a drinker but have been having 4-6 beers a night for the last week to admittedly “numb the emotional pain”. 

A bit of a bender or binge but I am no longer going to do that, it was just sort of a short “mourning” period.

Definitely a slippery slope I have no interest in getting into.

Thanks once again for the further comments.  Very good advice and words of encouragement.  This is a very difficult condition to go through as very few in our personal lives can truly grasp the full scope of how physically and mentally devastating it truly can be.
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).

Andy_75

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #16 on: June 24, 2021, 10:01:52 PM »



I am realistic and not betting on this happening (although it would be a literal Godsend if it did) but if/when this does happen, when do the 6-15 months commence?  From the start of your first symptom, ie. a lump OR from when you are out of the acute phase and into the "stable" phase?

Does anyone know?  Has there ever been a member here who ever came back and said his Peyronie's did in fact spontaneously resolve after 6-15 months?  Just curious...
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).

Benraycamp0

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #17 on: June 24, 2021, 10:29:37 PM »

So unfortunately there is a bit of skepticism on the idea that Peyronie's Disease can ever go away on its own. I start by saying that this is the opinion of Dr. Levine, based on my two visits with him along with quotes that I've seen people post of him either here on PDS forums or on other websites.

From what I understood of Dr. Levine's opinion: Scarring (plaque) caused by Peyronie's Disease never goes away. If you had an acquired deformity that completely healed over time spontaneously, it most likely never was Peyronie's Disease.

Now the question is, how do we know what is Peyronie's Disease and what isn't? Well to be honest, nobody really has an answer for that. The diagnosis of Peyronie's Disease is clinical - they look for signs that line up with what we know about the disease (age, palpable lump, deformity, pain, etc.) and the doctor gives the diagnosis based on that. The more experienced the doctor is (the more cases he has seen), the better chances of his diagnostic accuracy.

Could a urologist give a Peyronie's Disease diagnosis based on a patient's complaint of a 2 week old acquired 15-degree bend from some injury he had? Yes! And could that bend resolve over time without treatment? Yes! And that would probably mean that he never had Peyronie's Disease to begin with.

In that same example, a patient complaining of a 2 week old acquired 15-degree bend from a known injury, could also walk out of a urologists office with a "no Peyronie's Disease" diagnosis. 2 months pass by and the bend progresses to 40 degrees. Well in this case, we now know that it is Peyronie's Disease and what he presented to the clinic earlier with was "early Peyronie's Disease".

You can keep drilling at these scenarios all day long, at the end of the day we just don't know enough about the disease to accurately diagnose people at the onset. The only thing doctors and patients can do is stay on the safe side. If you have an acquired deformity, begin nonsurgical therapies to stop progression and possibly reverse symptoms, and if the case is or becomes severe, offer surgical solutions. That's it.

I don't mean to make things sound grim, especially since this post originally was more on how this condition is affecting you psychologically, but the truth is that scarring (plaque) caused by Peyronie's Disease is incureable and never goes away on its own.
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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.

Andy_75

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Re: The Only Way For Me To Beat Peyronies Is...
« Reply #18 on: June 28, 2021, 09:55:00 PM »

From my understanding, Peyronie’s disease is caused by a unique set of collagen type and inflammation/fibrosis that form a plaque.  One would assume that in a small subset, approximately 10% - 13%, the temporary inflammation and fibrosis improve/resolve enough, where it no longer causes issues with the elasticity of erections. 

In the larger population and more commonly, the inflammation and unique collagen type lead to a permanent fibrosis or plaque which calcifies, leading to a permanent defect in the tissue which hinders the elasticity of erections permanently.

Either way, chances are, one will see minor improvements at best.

I was just curious at to whether there are any reports here on curvature/dents resolving.

I understand what you are saying and agree, that in some, the micro trauma almost mimics Peyronie’s but resolves in 6-15 months in a very small percentage of people.

As an example, I worked as a line cook back while I was in College and cut my finger something nasty with a knife.  It was swollen, puffy for a good 6 weeks and where it was stitched (4 stitches), was a line that was a raised bump for a good year.  It did eventually flatten out but took a good year.

I suppose if your Peyronie’s is caused by a micro trauma, it comes down to what type of collagen is formed and what direction the healing process takes. Ie. micro trauma > inflammation > type 3 collagen (I believe) > fibrosis > plaque > calcification = Peyronie’s VS. micro trauma > inflammation > fibrosis > fibrosis breaks up/absorbed over time = spontaneous resolution of what was perceived to possibly be Peyronie’s.

With the latter being the path for a very small but fortunate, subset.
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Age: 40
- Symptoms: 2 Bumps on shaft (1 top/1 bottom) Jan 2021
- No pain/minor dorsal curve/subtle dent across width of shaft creates pliable erection with weak hinge like effect/mid shaft).
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