Peyronie’s, urinary symptoms, scar tissue, plaque

Previous topic - Next topic

0 Members and 2 Guests are viewing this topic.

Lostandsad

I'm in my early 30s. I've started getting symptoms of Peyronie's 3 weeks ago. Most likely from repeated micro trauma from sex, and long hours of rough masturbation.

I started noticing in the morning that my penis has a clockwise twist, my penis leans much more towards the left(it was straight before), my glans has a slight 35-40 degree bend to the left,  my urine stream was different. It's much weaker, and I have dribbling. My urinary frequency has also increased, I have to go every 10-15 minutes. After I'm done urinating, the moment I sit down, I feel that I have to go again. And after 30 secs to a min, or almost immediately, there's a bunch of dribble that I need to wipe with a tissue.

I feel I'm in the acute phase and it's moving rapidly. I feel palpable scar tissue/plaque on the base of my shaft. It's rubbery, like the entire base of my shaft has scar tissues that's already being calcified into hardened plaque. It's more rubbery on the left side, so that probably explains why it's pulling my glans and causing my 35 degree bend. I have some erectile dysfunction, erections are a bit painful, and I have premature ejaculation.

I thought it was a urethral stricture, but I just went to the urologist today and he performed a cystoscopy and there was no stricture. They also did an ultrasound on the penis and they couldn't see any scar or plaque(though I've read a lot of the times ultrasounds don't pick it up). He said he couldn't really feel it, although he also mentioned "I'm not sure how it felt before, so I can't say for certain." It's always a hard flaccid now, like a narrow rubbery base shaft, and a slightly engorged glans. The urologist said my bladder and prostate were also fine. I have zero pelvic floor issues, so please don't suggest it's that. It sucks cause I feel he's brushing it off like I have anxiety and pelvic floor issues, which I absolutely do not have. Maybe I should've held off on the cystoscopy, cause I feel it's extra sore and caused the scar tissue to calcify even more.
My urologist is a reconstructive urologist with some experience with Peyronie's(but given he couldn't feel much, I don't think he has much experience at all). He mentioned the xiaflex injections, but says he doesn't do them. I probably need to find a Peyronie's specialist.

Is there anything I can do about these urinary symptoms or do I have to live with it forever? Does "softening the plaque" help these problems at all?

Is there also any way to reverse the clockwise twist of the base of the penis?

This is quite depressing and really affecting my day to day. I'll probably be here for a long time. Thanks for any help

MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

nemo

Are you sure you're not feeling hard flaccid near the base and confusing it with "rubbery plaque"?

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.

Lostandsad

1000% sure. It wasn't like this before. And it's pulling down my glans and causing a 35-40 degree bend to the left. It feels like a hard rubber tube, it's more calcified on the left shaft, the right side is less. Hard flaccid doesn't do this.  
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

GaussRifle

The rubber plaque you are talking about could be an inflamed vein. Some people with peyronies have a vein that bulges out/flexes out near the scar tissue. That is not the plauqe itself. I don't think you can have a very long rubbery plaque running all the way from the bottom to the glans. That being said, plaque in itself is usually much smaller of you have any. Moreover you are losely using the term calcification. Calcification has a very specific meaning. It is not the same as simply having plauqe. Calcifications are almost always seen in Ultrasound. Most people don't develop calcification so early into the peyronies process, you could have a hard nodule but not have it calcified. Calcification is when there is actual calcium deposit on the plaque.

Whatever it may be, you first need to realize you are not alone. I am only 26 but have peyronies, so it can strike at any age. The best treatments to get onto are daily low dose cialis 5mg to promote nocturnal erections and daily traction therapy with a device like RestoreX or PMP.
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.

Lostandsad

Thanks for the response, and the clarification on plaque and calcification. Touching it now, it's definitely under the skin and not a vein. I feel it along the base of the shaft, feels like a stiff cylindrical tube, much more rigid on the left causing the pulling, and less rigid on the right. It's quite a large and flat area that feels stiff. I'll draw something in paint later to better describe it. After reading through hundreds of threads, I'm about to start pentox and cialis daily along with other supplements like coq10, Curcumax pro, L-Arginine, and paba.

Anyone with info about their urinary symptoms? I've searched here and found dozens of people having problems with that after getting peyronie's. That's the most debilitating for me right now. Any help would be greatly appreciated
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

GaussRifle

Supplements are good...but in terms of correcting the curve, nothing is as good as Traction. Supplements will not correct the curve, they can only stop progression.  Also the vien that bulges for me on one side is under the skin. All veins are not on the skin like you think.

Did you take propecia/finastetide at any point of your life fir hair loss ?
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.

Lostandsad

I've read conflicting things about traction. Some studies show that it reduces the curvature compared to the group that didn't do it. But I've also read about people who did do traction cause further damage to their penis.

edit: no I did not take any drugs known to cause peyronie's, such as finastetide or accutane. no family history of peyronie's as well

and here's an MSpaint pic of my penis. https://imgur.com/a/ItETnqW

the red is the more rigid part thats pulling it down, causing the glans to bend, the orange is less rigid. and the underside would probably be a yellow color to indicate it being much softer compared to the rest
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

bustedchubb

Hey man, sorry you are dealing with this, but your case sounds ALOT like mine.  I also had the urinary symptoms that you detailed.  I, too had a cystoscopy and found no stricture.  I waited about 8 months for mine, but I wish I had done it as soon as you did because it caused me a ton of stress worrying that it was a stricture.  I developed CPPS/Pelvic Floor Dysfunction from trying to push the urine out faster when urinating and for whatever else was going on. I did get pelvic floor physiotherapy for about 7 months and it really helped with the pain and the post urination burning.  My flow never really returned to pre-peyronies but it did slightly improve over time.  The burning / weird pain after urination has totally resolved now.  

Full history of my case from 12/2019 to now.  https://www.peyroniesforum.net/index.php/topic,13289.msg143390.html#msg143390
45 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

Lostandsad

Thanks for the kind words. I'm really sorry that you had to go through all of that yourself.

Fortunately, I never had any have pain or burning pain on urination. Just the weak, sort of twisted stream, and that I had to push my bladder hard sometimes to get the urine out. And the dribbling and delayed dribbling after I'm done urinating, probably one of the worst parts of it.

I know for me personally it's not a pelvic floor issue, I've never had involuntary kegeling, or any problems relaxing to urinate.

It seems that peyronie's is so under researched, and under funded. Only one informational website talks about the urinating symptoms caused by plaque. https://www.nafc.org/peyronies-disease
The dozens of other sites just seems like a copy and paste of each other. They don't even mention it as a possibility at all. I feel that the people like us going through the urinary symptoms have it real bad. Especially after doing a cystoscopy and seeing how everything is normal, what the hell can we really do!? I shouldn't be having urinary issues similar to a 60 year old with prostate problems when I'm in my early 30s. This is just f'd up. Sorry I'm just venting. I really don't know how to live with these urinary symptoms, especially if they won't get better.
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

bustedchubb

I hear you man, and feel the same way.   I have the same dribbling you have, too.  I actually had to wrap up with toilet paper after the shake out to keep the underwear dry.   It has improved some, but I still have it.  
45 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, lost length and girth.

Underwent Plication with Dr. Brian Christine in Birmingham, AL on 6/17/2021. Fully recovered with no complications.

Lostandsad

Quote from: bustedchubb on August 14, 2021, 08:49:58 AM
I hear you man, and feel the same way.   I have the same dribbling you have, too.  I actually had to wrap up with toilet paper after the shake out to keep the underwear dry.   It has improved some, but I still have it.

I do the same thing with the toilet paper as well. I have to wipe and shake a good 4-5 times, then wrap it up for the inevitable delayed dribbling. Might have to buy incontinence pads soon 😔

And Nemo and GaussRifle, you were right, it seems that the rubbery stiffness on the base is more of a hard flaccid. My apologies. When I stand up it's worse, and when I sit down it's better.

I now feel and clearly see a big lump of plaque under the right part of my glans. It's almost an inch long in width, and half an inch long in height(I don't know if this is how to do dimensions for plaque size, so bear with me). That's what's causing my glans to bend 40 degrees to the left.

Erections are still painful. It's the underside of the penis mostly, I believe it's the corpus spongiosum. If the scarring and plaque are there, it could explain why I'm having so many urinating issues. While erect, the corpus spongiosum looks bigger than normal, and it's very sore/painful to the touch, to the point of where it makes me lightheaded and gives me the reaction of wanting to throw up a bit. This is extremely depressing
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

projectpd

Hey
Doing twisted stretches won't have any scientific research on it but there are people in the PE (penis enlargement) forums who do this(for girth), but those forums probably not welcome to mention on this site. The logic is great -stretch the scar and/or healthy tissue in the needed direction.  There doesn't seem to be anything else that could help specifically, except what might make stretching and VED more effective , did you see my post about avocado seed oil
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%

Lostandsad

I'm trying to do manual traction, only been a week or so, so can't really say if it's done anything. For the avocado seed oil, have you tried mixing it with DMSO?
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

Combat-lizard

Hey man. When I first developed all this I had the same problems with urination. It turns out I had acute prostatitis and a tight pelvic floor,  what helped me get over that was pelvic floor stretches. I'd recommend seeing a pelvic floor physical therapist just to rule that out. Also I tried manual traction and worsened my injury, please be super careful with that or just stop it altogether. I know I still need to write my intro thing haha I can't figure it out on my phone.
24M, dent injury on left side base, no scar tissue yet, flaccid pain

taking L-Citrulline 1500mg, ALCAR 1500mg, COQ10 300mg

Lostandsad

Thanks for the suggestion. My urologist said my prostate/bladder/urethra were totally fine after examination through cystoscopy. Zero pelvic floor issues here, I've tried exercises and they do not help at all. I believe it's the scarring in the bulbospongiosus and corpus spongiosum that's causing all these problems for me and it's hard to find a solution. Just trying manual traction and taking my supplements at the moment.  
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

GreekGuy85

Hi Lostandsad - I'm glad you're here. You've been a helpful post-er already in the two months you've been on.   I had an initial left handed Peyronie's bend and have now developed a right-handed twist as well.  No urinary issues (so far), but the look of the twist is bizarre.  
This disease sucks.
Nick, Peyronie's for about 2 years
Good results so far with traction, pump, ADS
Have seen 4 Urologists, each one worthless

Lostandsad

Thank you. And yes agreed, this disease sucks. Fortunately, most people don't have urinary issues. The twist is penile torsion. I believe it's caused by one side of the suspensory ligament being looser than the other(just my theory). I think some guys with hard flaccid also have penile torsion as well.  
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray

Curvekiller94

I have torsion crap is annoying. My dick gets suck under my leg when I'm sleeping and lying down if I get hard because it bends upward when erect. So if my penis is leaving to the left while sleeping I was up with it wrapping around my leg lol feels super awkward and sketch lol.
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Lostandsad

Yeah it bothers me even looking at it. Are there any Peyronie's specialists who would even acknowledge that scarring can cause urination problems? I know my stream definitely changed, as it has gotten weaker and dribbles, and my frequency/urgency is every 1-5 minutes. Ejaculation isn't as strong anymore, and kind of just dribbles out towards the middle/end now. I know the scarring is pushing against my urethra from the outside, there's no other explanation. Is there any specialist who would acknowledge these issues and surgically remove the scar tissue? It's really f'ing me up. Oral supplements and diet aren't doing anything for me
MIA - nothing works after 5 months
supplements and pharmaceuticals I've tried:
cialis, pentox, magnesium chloride, dim, turmeric, hyaluronic acid, vitamin k2, paba, l-arginine, l-citrulline. either get surgery (and possible ed), get implant, or pray