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Winter

Yesterday was my worst peyronies day ever.

First, I'd like to correct my signature. I don't have hourglass, but two major dents on both ventral and dorsal area. As if my penis was being squeezed on a board. Looking from above, it looks perfectly normal, but from the side, it looks bottlenecked. But it was kinda of a discrete deformity for a while.

My first onset was almost exactly one year ago. Just a minor dent on the dorsal area, with a sharp pain while getting erect. The pain eventually went away but the dent remained. Every two or three months the dent would become a little bigger. On december of 2020 I had a flare up that showed a new dent on the ventral area, right on the opposite side of the dorsal. Both dents kept growing slowly but steadily for the past months with an occasional mild pain.
I've never had erectile disfunction or noticeable curvature (I already had a 20┬░ congenital curvature that never bothered me).

But on the past couple of days, I started feeling a mildly sharper pain every time on my penis. Until yesterday were, after exchanging some kisses with my wife, my penis got erect with a major progression on both indentations. Now it is even hurting while soft. It is definitely a major flare up. Now that I was starting to learn how to live in peace with that nasty disease!!!

Looking from the side, from the base to the middle, my penis still have its normal size and girth, but from the middle to the tip, it is much thinner. Both indentations are alive and hurting. I am afraid that this progression wont stop! How long can my penis being crushed but two plaques without losing its ability to hold an erection? Psychologically, today I can't have an erection. Besides, any attempt leads to more pain. But I am afraid of letting it rest and unwillingly allow the tissue to become even more resistant to stretching.

This is really a nasty disease. We have to be really strong!
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

Winter

I am usually very careful about how I write. Today I just wanna share my concerns. I apologize in advance if you find many mistakes.

I was so afraid of this disease that I wasn't even examining my penis carefully, in order to accurately describe the nature of my deformity. Now I want to change the approach. I am going to set a consultation with doctor Marco Tulio, a moderately famous urologist in brazil recognized by his popular youtube channel. He claims to be quite experienced with surgeries.
I'd like to consider my options from now on. Having this kind of deformity, what type of surgery would be the most recommended. From my researches from the internet, I am curious about this article about the extra-tunical grafting procedure that features Dr. Lue as one of the authors.
(Watch out, very graphic photos, be advised)

https://www.researchgate.net/publication/326104805_067_The_extra-tunical_grafting_procedure_for_Peyronie's_Disease_hourglass_and_indent_deformities

I'd really like to be able to afford going to US and actually make a surgery with those top notch surgeons. Unfortunately it is not the case. I hope Dr. Marco Tulio is good enough. He claims to have received training in US as well.

41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

Winter

I dont know if any surgeon would perform a procedure in me while in the acute stage. But I have to talk to someone and consider my options while I still have a functional penis. I am very eager to become a father and this is stressing me a lot lately. Specially after reading about pregnant women dying after taking some vaccines.

Besides, I am doing keto diet for two months, started VED about the same time and resumed taking celebrex two days ago for the pain. I decide to take 4 pentox pills a day from yesterday and also to rose the Tadalafil dose to 5mg.

I am trying to remain calm and to focus on the practical side but on this acute moment, things are becoming often much more emotional. I simply cannot see myself living this life of fear for many more months. My sanity cannot afford this. This is the first time I am actually considering an implant, just to move away from this disease. Let see how things are going to progress...

I plan to try radical things like 7 day fasting, Wim Hof method or something like this just to ease my mind. I have to at least pretend I can fight this somehow. I am definitely not a "penis guy". I always had a good size penis, but nowadays I just need a simple functional tool with no pain.
May God helps us all.
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

Benraycamp0

The best thing you can do now is add in traction therapy with RestoreX (1 hour a day) or Penimaster Pro (3+ hours a day) along with the other treatments you are doing. Note that traction is by far the most important nonsurgical treatment we have. It can correct deformity, lessen the pain, and stop progression.

Since you still have progression, pain and no Erectile Dysfunction, surgery wouldn't be warranted until the pain and progression stop.

Specifically on extra tunical grafting - it's only a surgery done by Dr. Tom Lue (California) and Dr. Brian Christine (Alabama). It provides extra support to the penis at the points where it buckles and cosmetically fixes the overall look of the penis. However, it's only done in a few cases (significant buckling, no pain, strong erections) and we really don't have long term data as yet on what happens to that grafting over time. In the few patients that it's been done in, it's successful so far but we still don't know what happens in the long run. There's some skepticism that the grafting will hold long term. Note: this is the opinion of Dr. Levine who does not do the surgery himself but what he knows about it.
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.

Winter

Thanks for the reply Benraycamp0.
Yeah. I was afraid of that. A true restorex device costs a huge fortune to get my troublesome country. Our currency is ridiculously devaluated and the import taxes are draconian. But I will find a way to get one.
Besides, I never fully understood how traction would help fight against indentations rather than only curvature.

I am also afraid that my condition will keep progressing until I completely lose function of the penis. If is not the case right now...

I will see with Dr. Marco Tulio what kinds of surgeries he performs.
Thanks a lot for the quick reply.
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

Winter

Quote from: Benraycamp0 on July 10, 2021, 09:07:10 AM
The best thing you can do now is add in traction therapy with RestoreX (1 hour a day) or Penimaster Pro (3+ hours a day) along with the other treatments you are doing. Note that traction is by far the most important nonsurgical treatment we have. It can correct deformity, lessen the pain, and stop progression.
(...)

Do you see much difference between Penismaster and RestoreX, besides the time using it? I mean, RestoreX would really help myself faster?
41 yo, married. Onset on 07/20. Flare up on 07/21. Brand new flare up 01/23. Indentations and hourglass. It still hurts sometimes; No erectile dysfunction. Taking Pentox, Cialis, Supplements, trying diets, fasting, VED and manual traction.
God bless

Benraycamp0

I see and I really hope you can find a way to obtain the device. Surgery is usually only warranted once nonsurgical treatments are attempted or if the case is very severe to begin with. But I understand your circumstances.

Your penis still sounds very functional - 20 degree congenital upward curvature + 2 new dents and no signs of Erectile Dysfunction. Even though you might think you'll obviously develop Erectile Dysfunction in the future, you actually might never need anything beyond pills. Nobody knows unfortunately for sure.

The KEY thing here is to prevent worsening. Clearly that is your biggest fear and rightfully so! And the BEST tool we have for that is actually not surgery (ofc an implant is an option but no surgeon would operate given your symptoms today) but is traction therapy.

As far as how traction helps with any deformity - our penis is an elastic organ. In a man without Peyronie's Disease, when normal scar tissue (which is inelastic) is deposited in response to an injury, it causes a slight deformity. This gets remodeled back to something more similar to the regular elastic tissue which usually removes the perceived deformity.

In a man with Peyronie's disease, an abnormal amount of scar tissue gets deposited in response to an injury. On top of that, the remodeling process is flawed and all that scar tissue remains since it barely gets remodeled. Traction simply induces the remodeling process to begin by stretching the scar tissue.

Note that in the discussion above, we never talked about the type of deformity (curve, hourglassing, dent, indentation, etc.) since it does not matter. Traction will pull at that the shortest side of the penis, which is where the inelastic scar tissue lives.

For the differences between Penimaster Pro and RestoreX - I think they are both excellent, proven devices. I usually just recommend to choose one based on whether you can actually commit to the treatment plan. If you can manage ~4 hours per day on average, get the Penimaster Pro. It's a more comfortable device. If you can't commit to that, no worries and get the RestoreX. You'll adjust to the clamp system.
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.

Haiaty

I'm from Brazil and from your comments it seems to me that our problems are very similar! I'm using antioxidants, propolis, vitamin E, vitamin fish, but without much results! Dr. Marco Tulio, in some cases recommends vacuum therapy! Then tell me if I managed to consult and how it went!

detail, after I started using propopolis cream I felt an improvement in acute pain
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Pfract

Haiaty: the original poster haven't been active for some time now, but he seems to pop up here and there. Please send him a PM. It would probably be easier for when and if he comes back to see it and reach out to you.

Also, please create an introductory post in the correct section. Welcome aboard!  Seja bem-vindo! (falo portugu├¬s)