Hello, here's my story

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UHF

Hi to everyone.

A few weeks ago I woke up feeling a very strained erection that seemed to a nagging, tugging feeling just on the edge of pain. I ignored it but it felt very much like i'd pulled something somewhere. I didn't look at my penis that day.

A day or two later I noticed my erection was feeling strained and painful. I examined it to find where the pain was coming from and saw an indent on the left side right at the base where the shaft meets the body. That was really strange. Then a few more strained/painful erections more I noticed a pronounced narrowing at the base with a bulging outwards on the right side. It looked as if someone had held my penis in place midshaft and pulled only the base outward sideways to my right and it just stayed like that. Like a sharp, sudden turn in the road and then back straight. I was shocked but more confused. I had some knowledge of peyronies but I had thought it was plaque causing a gradual curvature of the penis over time. Not this seemingly instant transformation. I thought it must be a penile fracture of some kind. However there was no bruising or swelling of any kind.

Scouring the internet I came across this website which seems to have the most advanced information available. As I have some medical education I was able to read through the medical literature and seek out a plan of action.

It seems that heat/hydrotherapy, Vacuum pumping, penile traction/stretching, collagenase clostridium histolyticum, pentoxfylline are the methods of choice that seem to have the greatest efficacy.

I immediately started doing something because without a diagnosis yet, I've already learned on here that early intervention is the key. Especially if this is done safely and has no negative impact on non-peyronies, if that is in fact what it is and I believe it is.

I started with this regimen that maybe I can get some advice on:

Acetyl L-carnitine/lipoic acid 500mg daily
full spectrum vitamin e ( with tocotrienols ) 800iu/vitamin k2 60mcg
Curcumin ( teaspoon a day. Helps control inflammation )
Coenzyme Q10 ( should be ubiqiunol but will get the latter shortly )

I recently bought the bathmate and want to know if this works as well as the medical grade vacuum pump? I'm assuming not but at this early stage I'm at an introductory level starting out.

I would be day 40 of possible peyronies. I can't see this kink correcting itself easily and could only assume it will get much worse than it is. The problem is the instability it creates during sex. The kink being at the base and almost folding in on itself. Very structurally unsound for any type of penetration. I have had sex while holding it at the base, just in case. My erections seem o.k for now.

Short of sending a picture, this is what it looks like.
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    * *******            
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Just hope I don't get banned early for graffiti art. ;D ( Hey, have to keep my sense of humour! )

Thanks everyone.

nemo

Sorry to welcome you to "the club" but it's clear you're more on top of this than most of us were when we realized what was going on. For my part, I think you can drop the Vitamin E ... it won't hurt you, but nothing's ever shown it to do anything for Peyronies Disease either.  

I'd probably encourage getting a prescription for Pentoxifyllene as soon as possible.  Other than that, it sounds like you're doing all the right things.

And don't assume it will get worse - we all do that, and only for a fraction of us is that true. Many, many men get a distortion that either remains the same or actually improves somewhat.  So don't go straight to worst case scenario thinking.  

Best to 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.

UHF

Hey Thanks Nemo.

I've seen that vitamin e has been discredited on here for peyronies. I can see why. I think a lot of the studies done on it used the synthetic version of vitamin e as alpha tocopherol and while it was sometimes effective it does seem to be about 50/50. I'm using the natural form vitamin e with gamma tocopherol and tocotrienols which have been shown to be 100X more effective for a number of inflammatory conditions and I'd place a bit more faith in. I'm also using it topically by combining with black cumin oil for tissue penetration. Theoretically it seems sound and I'm treating it as a safe experiment in case it turns out to be effective and could possibly benefit anybody else.

I was thinking about pentoxifyllene but xiaflex seems maybe more effective if I can get it.

I was also wondering if anyone on here has tried experimenting with low dose aspirin ( 80mg ). I could see that being somewhat effective also.

However all of this is just while I'm waiting on a diagnosis. In the meantime thanks for the encouragement Nemo. I appreciate that and the knowledge from experience from the guys on here cursed with this situation.

I do feel fortunate that I'm getting on this early and have some knowledge to act. However I feel there's hope for everyone. The science on so many conditions that people have lived with for centuries is becoming better understood and faster than many people think. We're living in a time where we're finding answers and we're all lucky for that. I am very optimistic.

nemo

Xiaflex is certainly more likely to offer improvement than Pentox - it's a matter of degrees of risk and expense. Pentox is an old, safe, dirt cheap medication. Xiaflex is brand new, ridiculously expensive and frankly, dangerous as heck if you don't follow the company's warnings to the letter (risk of penile fracture, etc.). But again, statistically, it is also more likely to help. So it's a question of which is the better option in your particular situation.

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.

UHF

Thanks for that info Nemo. I was already kind of set on Xiaflex. Is pentox an injection as well or just oral medication?

I've since come across some more interesting studies.

Here's one.

Mechanism of antifibrotic effect of taurine and niacin in the multidose bleomycin-hamster model of lung fibrosis: inhibition of lysyl oxidase and c... - PubMed - NCBI

It talks about Taurine and niacin down regulating transcription nuclear factor-kappaB. This could, at least theoretically, reduce fibrosis and collagen plaque build up in peyronies also.
A very cheap and simple approach. I would supplement with a b complex and a full spectrum amino acid 12 hours after the dosing just to create a balance.

nemo

Pentox (Trental) is an oral medication.

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.

Irish_worried

I myself saw urologist last week and he diagnosed peyriones. Asked about pentox and he said he was out at a conference in the states and its pretty much agreed in the field pentox doesn't really do anything. I have the same kind of kink in my penis as you UHF. I was prescribed viagra and told after the first eight weeks it should begin to stabilise and hopefully after eight months completely settle down. I was told to monitor any changes but aside from the viagra if there no other change there's not much else to do. Fingers crossed after a year things will be back to normal.    

LWillisjr

Topics is now locked as an introductory topic.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
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