Hey Everybody | My Story

[Brow]

Hey everybody, I'll go ahead and share my story and symptoms.

Currently I'm in my early 30s. About 5 years back I injured my penis while trying a stupid jelqing and erect bending routine.

The Peyronie's Disease symptoms appeared basically overnight, with them worsening for a few months before reaching a stable phase. Here's what happened:

I woke up one morning and noticed that a vein had suddenly appeared on my penis out of nowhere. I concluded that I had somehow damaged that vein and it was now thrombosed and kicked out of circulation. Later seeing that blood still passes through it, but not so much when I am upright, concluded that it was actually probably both thrombosed and varicosed.

I also had a whole range of other symptoms:

- Glans and the underside of my penis didn't fill up as well as they used to.
- Hourglass shaped penis during mid-erection. I later found out that it is usually caused by a scar tissue formation in mid-shaft.
- Penis bending downwards during mid-erection, possibly due to a weaker underside.
- Lessened sensitivity and possibly torn suspensory ligament on the left, caused by the erect bending.
- A slight penile curvature to the left, which straightened out when fully erect.
- Girth and length losses. About 0.3 inches of girth and 0.5 inches of length.
- Some scar tissue on mid-shaft is visible and harder to the touch. But only a small portion can be touched on the outside, it then goes into the shaft.
- Hard flaccid penis.

This may sound pretty bad, but actually my penis would still function somewhat properly when fully erect due to the cavernosa bodies being intact. Still, I would usually need constant manual stimulation to keep erections since the proper "sealing" of the penis (that is the soft tissues around the cavernosa bodies) was compromised.

I was able to have normal sex with my GF at the time. What would happen is that I'd get semi-hard, then with a bit of manual stimulation I'd manage to achieve full erection and once the BJs and Sex started I'd be able to keep it that way. If the continuous stimulation stopped for any reason, though, I'd go back to the semi-hard rubbery hourglass shape state rather quickly.

Before the injury I'd be able to stay erect for at least a few minutes before starting to lose my erection, even without any additional stimulation. Not after the injury, though.

I did try to ignore my condition for a few years, hoping that the it would eventually fix itself. Didn't happen.

About two years ago I started trying to heal the scar tissue and restore my proper size and functions.

I did try several things and routines. Not sure if guys would be interested, please let me know if you'd like me to share that in more detail.

Progress-wise I do notice improvements, especially last year. It's difficult to tell which one of the things I use contributes the most, though.

Currently I focus mainly on natural oils and hyperthermia. I do use a few other possibly useful devices that I personally think are helping out somewhat. Not sure if I should mention brands, though, as to avoid promoting anything.

Would anybody suggest anything else that may help in this case? I haven't explored the whole dietary supplements and diet thing, nor have I tried hGH or other similar substances. I also haven't tried injections or other more invasive methods cause I am concerned that they might eventually damage my penis even more and worsen the condition.

That's it for the most part. Thanks for reading, everybody!

[Mike_1024]

Thanks for posting!  It's always good to hear from someone who is experiencing improvement.   I'm just getting out of the "ignoring it, thinking it would fix itself" stage.  I don't think anyone here will mind you mentioning brand names and models.  It actually helps.  I haven't decided on a specific plan yet, but many/most guys have said that traction and/or VED helps.  So, if that's what you've been doing, I'd be very interested.  Congrats on the progress you've made.  Have the other symptoms improved (reduced sensitivity, ability to maintain erection)?  

There is a "survival guide" on this forum that I'm sure will fill in some of those gaps.  And it's a very helpful, welcoming atmosphere here, so I'm sure you'll get a ton of perspective from guys who have been there, done that.  I don't have much experience dealing with it yet, so I don't have much advice to offer.  But you've got my support and encouragement for sure.

[Lostandsad]

Thanks for sharing. Has hyperthermia helped with the scarring or plaque at all? Have you been to a urologist to get a diagnosis?

[Pfract]

Hey Brow! Welcome aboard. Like people said, the survival guide is a great resource to get you started . I hope that you feel at home here with us and that you are able to get the support you need.

[Benraycamp0]

Your symptoms don't sound like Peyronie's Disease, but what is currently known as Hard Flaccid Syndrome.

Were you actually diagnosed with Peyronies Disease by a urologist? Did they run an ultrasound and see scar tissue? Or did they palpate and feel scar tissue?

To learn more about Hard Flaccid, here is a paper: https://www.researchgate.net/publication/331882242_Hard_flaccid_syndrome_initial_report_of_four_cases

There's also a subreddit dedicated to this with men reporting the same symptoms as you are presenting with: https://www.reddit.com/r/Hard_Flaccid/

[Brow]

Hey all, thank you for taking the time to reply!

Lostandsad
Have you been to a urologist to get a diagnosis?

Benraycamp0
Your symptoms don't sound like Peyronie's Disease, but what is currently known as Hard Flaccid Syndrome. Were you actually diagnosed with Peyronies Disease by a urologist? Did they run an ultrasound and see scar tissue? Or did they palpate and feel scar tissue?

To cover both these. I did went to an urologist while trying to figure out what was going on. The guy focused on my newly appeared vein a lot more than on my other complaints. Said he's never seen anything like it. The vein does look very odd because it is like a big rubber band going over my shaft, stretching from the bottom to just under the glans, even when flaccid. It's right under the skin and completely over the rest of the internal tissue. In fact, it's so over the rest of the tissue that you can freely move it around. It basically looks like it's a vein that has been thrown out of circulation, and especially gives such an impression when the penis is flaccid, which it was during the check-up. In reality, tho, the vein is still in circulation because if I pinch it during erection it would immediately get bigger with blood trapped in it. It would also get bigger with blood trapped in it if I stand up or otherwise be in an upright position, which leads me to believe that the vein has become varicosed and doesn't have well functioning valves on the inside.

He called a colleague of his for a second opinion, of what I heard the other guy was just as confused.

After that visit my train of thought was "well, those guys are as clueless as they can get, and completely ignored my other symptoms". The vibe I got was like they just wanted to use me as a guinea pig to possibly document an odd condition, rather than care at all about my Peyronie's, which I believe also have. So I never came back.

Why do I think I have Peyronie's Disease?

- Well, that is because my penis used to be straight, but is now curved to the left (the curve point is in the middle of the shaft). I can also feel an oddly rigid tissue where the curve begins.

- My penis gets into this odd Hourglass shape during mid erection, which I believe is caused by the scar tissue constricting the normal tissue.

- I lost size (not just flaccid size). My explanation is that the abnormal tissue affects the expandability of the healthy tissue, thus causing the slight size alteration, even when fully erect.

- I can feel a dull ache inside my penis where the scar tissue is. It's more of an ache than a pain, very low in intensity, and more pronounced after I've had an erection and/or engaged in any form or sexual activity.

To summarize, part of this abnormal scar tissue can be felt on the surface of the penis (under the skin). It then goes inside the penis where I feel very low intensity constant dull ache, and is the point where the penis curves.

After seeing the useful link about the hard flaccid condition, I do also believe I may also suffer from that as well.

I'd guess both things may be connected in my case, as all these symptoms I describe appeared at the same time.

On the bright side, I did make positive progress over the last year.

When I thought about how I should go about dealing with this thing, my first thought was to research as much as could. The studies I've gone over were quite a lot but I remember noticing some rather interesting facts and statements.

For instance, I did found an article that mentioned that a lot of guys would micro-injure their penis over the course of their lifetime, but only some would develop Peyronie's Disease. And of guys who develop Peyronie's Disease, only some would enter its longer chronic stage, where for others the condition would resolve over time or, in some cases, spontaneously.

That made sense to me, somewhat, because PE forums are full with guys who do intense jelqing, stretching, pumping, and kegeling routines, who, I have to assume, do injure their penis. In fact, the micro-tears and subsequent healing they describe is why these routines actually work. However, only a small fraction of them injure their penis to the point of developing Peyronie's Disease. Somehow the majority of those guys doing PE exercises don't seem to report severe problems.

My theory behind that was that, of course, the severity of the injury does matter. But other crucial factors may play their role as well. Such as the individual's overall health state, and by that I mean the individual organism's internal inflammatory state, the nervous system's inflammatory response to an injury, as well as the overall androgen levels in the blood, possibly.

I read that androgens, such as Testosterone and DHEA (we should include hGH as well) are responsible for penile tissue health and integrity. It does follow that guys who'd have naturally higher androgen levels, all other things being equal, would have less chance of developing Peyronie's Disease.

So, the first thing I thought was of ways to naturally increase my androgen and hGH levels. Things that came to mind was diet, exercise, testicular cooling, as well as a specific routine of no-masturbation per 7 days, since spikes of T levels (of up to 145%) are usually recorded around the seventh day of abstinence.

The testicular cooling is me bathing in cold water, as well as an additional cooling while sitting on my PC, done with the UBreeze device. This ensures that my testicles would function optimally, or at least won't be hindered by improper temperature, which could be the case for many guys.

I also noticed that the less I "terrorize" my penis with masturbation or sex, the harder morning erections I have, and the more elastic my penis would become over time. Thus I limited my masturbation to once per week, or even a bit less. I consider this to be crucial for the improvements I've been noticing.

I then noticed studies mentioning that Vitamin E could be helpful for Peyronie's Disease. In most cases it was usually used in combination with other topical treatments, but what was the important thing in my mind was that it was shown possible that the scar tissue could soften up and eventually dissipate, and that external agents could have influence over the process.

Since I had gotten the UBreeze and was using it, I also decided to try the other products from that website, which were rather consistent with my ideas on how I should go about healing my penis. I basically wanted to avoid more invasive or rough methods, as to avoid aggravating and worsening my condition. Thus I also got the SR-Cream, UHeal, and a bit later the UHeat.

Simultaneously, I also got Castor Oil, Vitamin E Oil, Coconut Oil, Magnesium Oil, Aloe Vera, DMSO, and SSKI.

20% DMSO + 75% Aloe Vera + 5% SSKI (10 - 20 drops per day). Then increased to 30% DMSO + 65% Aloe Vera + 5% SSKI. (but decreased to 5 - 15 drops per day). Liquidish but I try to apply it slowly over time.

I also used a lot of Castor Oil in the beginning, but later started using it about 3 times per week.

As far as UHeal, I found its magnetic field actually had effect on my scar tissue in the sense that I could physically feel something going on inside it. I think that it is possible that the scar tissue could have more iron in it than the adjacent tissue, which reacts to the magnetic field of the Uheal. That's just a speculation but it would be great if the UHeal could somehow affect the integrity of the scar tissue from the inside, along with its other effects.

SR-Cream, found it rather helpful. I feel my tissues softer and fuller after using it. Some great anti-inflammatory herbs inside, as well as Vitamin E and Coconut Oil.

Lostandsad
Thanks for sharing. Has hyperthermia helped with the scarring or plaque at all?

UHeat, found it helpful as well. After I started using it I noticed rather significant improvements. Heated and softened tissues could be easier to penetrate, which could act as a catalyst of sorts and improve the efficacy of the other methods. Of course, even heat by itself (hyperthermia) has been shown to help with Peyronie's Disease in one study I found. So, this is a valuable device by itself. The study showed that 40 degrees were found to be helpful. You can regulate the heat with uHeat, and I do like using it at 50 to 60 degrees to compensate for any potential heat loss between the device and my penis. I do think that if the guys from the study would have tried a bit more heat it would still be found just as, if not, even more effective.

What are my improvements?

I've been using the mentioned methods above for a good while, several months, and some longer.

- I did notice that the hourglass shape is less hourglassy by 25%. My vein has actually gotten smaller and more elastic by 30%. It's still nowhere near good enough, though.

- The curvature to the left is about 15 degrees less than it used to be.

- Sensitivity improvements by 25%.

- Less hard flaccid penis. It would be difficult to give percentage on that because the symptoms fluctuate. Basically some days I notice that I have almost a normal functioning flaccid penis (!). Most of the times it still turtles, though. I do mention it is improving because the turtling phase used to be the only phase that existed before.

- The return of spontaneous erections. These used to be completely gone. I thought it was normal for them to be gone after 25, but apparently not (?). I started having some half-assed spontaneous erections recently. Definitely not as strong as they used to be, but still good to see some life into the penis.

- More expansive full erections, and a bit easier to maintain. Maybe by 30%. Still nowhere near the level of my pre-injury days, tho.

All in all, the symptoms and the positive results seem to be tightly related. Basically the less curvature, scar-tissue, hardened varicose vein, the better my erections are by a similar degree.

The drawback from using numerous treatments at the same time is that I don't actually know which works better than the other, sigh, especially long term. But I don't really feel like risking or slowing down my progress by excluding any of those.

This might be getting too long to read, tho . I actually had a longer report in mind but figured nobody would have the patience to go through it. There are a lot of things to mention and I am sure I'd later remember details that I forgot to include. I'd be sure to post more reports and interesting findings if I stumble on anything.

Thanks for reading, everybody!

[Lostandsad]

Thanks for the write up. But... I don't know what to believe these days, I can't help but feel skeptical about all these products... uBreeze, testicles? Does that really matter for Peyronie's? uHeal? Magnets helping Peyronie's? Sounds pretty far fetched... also, there's a guy in comments of the forum of the ubreeze products and he said that, he ordered sr cream and it did absolutely nothing for him, and the site purges negative reviews.

https://cure-erectile-dysfunction.org/numbness-in-penis-and-testicles-sr-cream-for-sensitivity
Scroll to the bottom for the only comment. (I believe ubreeze.org and cure-erectile-dysfunction.org are run by the same people)
Most of the reviews on uBreeze.org sound too good to be true and make me want to order tons of SR-cream... but I won't do that. You know what they say about things that sound too good to be true... but damn those reviews REALLY make me want to order one just to try though...

The uHeat seems to be the only thing here that is legit... I think some other members use it too. And 50-60 degrees? Celsius? That would burn the f out of your penis, no?

[Brow]

I prefer to use the UHeat thing not very tight around. I figured that every time heat is transferred from one object to another there ought to be some losses, so I try to compensate for that. Doesn't really feel like it's burning around 50 - 60 but the thing can go to over 100 degrees. Tried it once and it was wow. The label is in Celsius so I use that as a point of reference.

If you stumble on one of these products you stumble on all of them, so I just decided to try everything. Tried to find reviews from other sources before getting them. About the cream I found this thread - https://www.FT/phpBB3/viewtopic.php?t=6885 which had various opinions.

The UBreeze thing is not for Peyronie's at all, it seems, but I had my own logic about it.

The UHeal sounds bizzare but I figured I had nothing to lose.

I also found a lot of guys mentioning that DMSO didn't work for them but decided to try it out as well.

The way I think about it is "if it works for me, great", "if it doesn't, whatever".

Of what I've read it seems that even the more effective methods for this condition have a relatively low success rate so I'm not really bothered if guys mentioned something didn't work well for their situation (if there are others who report positives, that is).

I'm not trying to promote these products or anything. I just shared my experience. The moderators could remove parts of the names or something as I can't modify the post.

I'm still not sure which one of the many things I mentioned is actually helping, especially long term, as I'm doing a number of things simultaneously.

But then again, I'm too afraid to stop using any since I do notice gradual improvements.

[Brow]

Writing all of the above, I've been thinking about how I tend to only add stuff to use, which could drag for years, and I'm not sure if that would be the right approach. What do you guys think?

Should I start discontinuing some of the things I apply in order to see which is helping more?

What I'm most afraid is that I'd lose the progress I've been having and be back to point zero.

Or should I add even more things? I've been thinking about a traction device but I'm a bit hesitant as the approach does sound to be more aggressive. Are there any reports of guys who worsened their Peyronie's Disease by using any such device?

And which one would be the most effective and safest? I guess I currently wonder if RestoreX would be worth it? I see that it provides bending, which would be crucial. Are there other traction devices that could do that?

Thanks again for going through my walls of text!

[Brow]

Hey everybody, I just read the Introductory Board Rules and it seems that I'm nearing the 10 post limit.

Please don't answer in this thread as I wouldn't want to violate the rules.

I'll leave this thread as a simple introduction and post my questions as separate posts in their respective category.

Thanks for reading, everybody!