Unusual case, started four years ago stemming from mild injury years earlier

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greatlakes

I've lurked on this forum off and on for 5 years or so, got a lot of helpful information from it and figured I would finally make this post.

I'm 32, not in a relationship. My issues started about twelve years ago when I was 19/20. For a while, I stupidly experimented with bending my penis (very carefully) while erect to see if I could straighten it. It wasn't even very bent at all, just a bit downward and there was no reason to do this but I did it repeatedly. I stopped that at some point, but it had worsened my erection quality a bit and sometimes my penis would hourglass and stretch while urinating at the spot where I had applied the pressure.

When I was 22, one day after urinating I seemed to lose blood flow to the penis and it started constricting hard against my body and that was the beginning. After that my penis was shrunken while flaccid for months and I couldn't get an erection for weeks. They slowly came back, with one side inflating before the other. But I kept having those spasms while flaccid frequently whenever I did anything to elevate my heart rate. It was basically like Reynaud's syndrome of the penis, and it's a horrifying experience every time. These reduced and mostly went away after several months as my penis healed.

A few years later, these symptoms all repeated again. This time, I noticed my penis became very loose at the base, and would no longer hang straight down. I tried to keep it straight as much as possible, but while sleeping it would twist and eventually it set or healed into a twisted position which it would remain in to this day.

Start of Peyronie's symptoms
Skipping ahead to 2017, I started getting classic Peyronie's symptoms - hourglassing and bending at the spot where I had applied pressure to bend it all those years ago, and the same place where it would hourglass during urination. Painful erections. This acute stage lasted maybe over a year, and essentially the hourglassing spread through the length of my penis so it was just reduced in girth and lost a lot of length as well. In addition, due to the torsion at the base, I lost the support for my erection from underneath and erection angle became very low.

For the past few years, it's continued to get worse and still hasn't stabilized. The main issue is the torsion. It's hard to describe, but due to the twisting what seems to be happening is I've lost erectile tissue at the base of my penis and that part has sort of sunken into and fused with the scrotum. On the underside of my penis, the scrotal skin has progressed up the shaft and as it does that portion no longer gets erect and is essentially just part of my scrotum, so I continue to lose length this way.

Attempted Treatment
Naturally I've seen many urologists, only a couple of them helpful. I've had ultrasounds with two different doctors and neither could find any actual plaques therefore didn't really offer much assistance, however I did start taking cialis which helps in some ways. I've tried VED, and several different traction devices, which haven't seemed to help, though my consistency with each method hasn't always been ideal. I also tried a lot of supplements/nutritional things and other random ideas I got from this forum.

I know that even though I've had the same symptoms as that of Peyronie's Disease, this is likely technically something else seemingly unknown to medical science. At this point, I just want it to stabilize and stop getting worse. The worst part besides just watching it get worse is not knowing what the endgame of this is going to be, and if I will end up without a penis someday as it continues to degenerate from the base downward.
32 years old, single, peyronie's symptoms from 2017 stemming from injury years earlier
Torsion and curvature, no plaques detected in ultrasound
Currently using cialis, PMP.

nemo

great lakes, welcome.  Have you talked to a Pro or GP about trying Pentoxifylline, for it's anti-fibrotic effects and improved blood flow?  

I would think a combo of Pentox, Cialis, and maybe VED and or traction would be the best hope of perhaps rehabilitating your penis.

Just a thought. Again, welcome, we're all in this together.

Regards,
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.

greatlakes

Thanks, no I've never been offered Pentox and no doctor has mentioned it. I've heard of it but figured it was probably something they only offered when there were detectable plaques. Due to no plaques, doctors don't seem to consider it true Peyronie's and basically dismiss any concerns I have, no matter how much they impact my life. But maybe I will ask about it next time because it does seem like it could help me and especially might have helped in the past.
32 years old, single, peyronie's symptoms from 2017 stemming from injury years earlier
Torsion and curvature, no plaques detected in ultrasound
Currently using cialis, PMP.

Benraycamp0

Is your deformity present during a full erection? Or do you see it mostly while flaccid and semi-erect?
The shrinking of your flaccid penis sounds more typical of Hard Flaccid symptoms. Have you ever looked into that?  
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.

Mikel7

Welcome Greatlakes to the forum! I am wondering if you are close to Chicago? You could make an appointment with Dr. Laurence Levine who maybe able to asses your situation more correctly. I know that traction can be difficult to do everyday consistently but I am a firm believer in it. VED can also help too if used corectly. Cialis should also help with increasing oxygenation and inflammation decrease.  One thing you don't want to do is to focus on worrying about the future with this.  
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 :)

greatlakes

Yeah the shrinking of the flaccid penis I mentioned was temporary for a few months and I did also have hard flaccid during that time and even longer than that. The deformities are present when erect, like normal Peyronie's but the twisting also happens while flaccid. There's a certain fixed twist at the base that shows up when erect, but the rest of it will twist much more throughout the day depending on what I'm doing.

And yes, I have actually seen Dr. Levine. He was more helpful than other urologists but just didn't really have an answer. I think the symptoms I have, like what I referred to as "Reynaud's syndrome of the penis" (it is basically exactly like that but it's not as bad right now as it has been fortunately and cialis also helps with it) and the issues caused by twisting must be like 1 in a 100 million people or something, so it's just really hard to get that across to doctors. Traction does seem like it should help me and I'm trying to be more consistent now and not expect instant results.
32 years old, single, peyronie's symptoms from 2017 stemming from injury years earlier
Torsion and curvature, no plaques detected in ultrasound
Currently using cialis, PMP.

Benraycamp0

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.

greatlakes

Basically just acknowledged that I had, I don't remember the terminology he used, but some tightness in the flaccid penis that should be helped by cialis (and it does), and that he didn't know anything else he could do. Surgery to straighten it wasn't a good option in his opinion due to high risk/reward ratio. Didn't have a solution for the erection angle or stopping the loss of size, etc. I brought up traction myself and he basically said sure, but as I said basically it seemed to me like the treatment hinged on whether they found plaques in the ultrasound. Since he didn't, he didn't seem to offer any treatment he might have to other Peyronie's patients.
32 years old, single, peyronie's symptoms from 2017 stemming from injury years earlier
Torsion and curvature, no plaques detected in ultrasound
Currently using cialis, PMP.