Just diagnosed with active phase of Peyronies Disease

[JJ0]

First of all, a big thanks to everyone involved with running and participating to this forum. I am glad I found it, and already learned a lot by just passively reading here.

Now for my info:

Age
47

What did your medical doctor conclude?
I have seen one urologist, who diagnosed me with Peyronies Disease (acute phase). Mostly based on my description of symptoms. He did do a brief physical examination, but did not seem to be able to find much. He did not mention finding any plaque.

He basically just said: nothing we can do now, it will get worse, come back in 6-9 months when things have stabilized, and then we will see if you can be operated, but be aware that operating will result in a shorter penis.

This urologist did not seem very interested or caring. I left feeling quite distressed, disappointed and depressed. After I researched Peyronies Disease online myself, I concluded that I needed to find a better, more specialized urologist. I think I found one, and I have an appointment there in about 3 weeks.

How long have you had symptoms?
2-3 months.

What are your symptoms?
Upward bend (maybe 30 degrees), and the area of the glans and say 2 cms below are significantly less erect than the rest during an erection. This area is also painful during an erection, and a long period afterwards (hours to days).

What treatments have you tried and what were the results?
Nothing yet really. I have just started taking Q10, L-arginine, and L-Carnitine as the survival guide recommends. I have also started exercising in a gym 2-3 times a week.

Do you have insurance or means to get medical treatment?
Yes. But I do not live in the US, Xiapex is not available in my country.

where are you in dealing with the psychological aspects of Peyronies Disease?
Initially I was feeling quite depressed and ashamed. Right now I am trying to just focus on what I *can* do, rather than what I can't. I am hopeful the new urologist will be more of a help. I would lie if I said this condition does not affect me.

Are you in a relationship?
Yes. I feel very lucky that my girlfriend is supportive.



One question: the survival guide mentions than erections are good. However as I said erections are (a bit) painful for me (and this pain lasts for hours or days afterwards) - does this not mean that erections are causing further damage?

I am thankful for any advice I will get on this forum!

[TonySa]

Although the erections are painful they are still believed to be healthy for the penis.  I'd consider adding traction or VED ASAP and when you talk to the doc pentox and low dose nightly pde5i which all help remodel plaque to healthy tissue.  Welcome and stay on top of it as you are instead of waiting 9 months!

[peter123]

"He basically just said: nothing we can do now, it will get worse, come back in 6-9 months when things have stabilized, and then we will see if you can be operated, but be aware that operating will result in a shorter penis"

In my opinion any doctor who says this deserves to get shot

[jan.schaller1958]

Yes, and that stupid guy (urologist) I talked to yesterday tried to tell me my cardio artery disease (CAD) could make my penis shrink anyway, along with the Peyroines. Then I talked to an internist who told me that that Dr Otero at Kaiser should stick with urology and keep his nose out of internal medicine. This internist said there is no way CAD can make your penis shrink. Totally not true. And then Dr Otero said about Peyroines surgeries, ,,Well I sure don't get any guys lining up at my door for a surgery that will shrink their penises." I wish someone would shrink his head. Then he said that that Xiaflex was very painful, but they give you numbing injections first. He sure doesn't give a guy much hope with Peyroines.

[Olive]

I beg to differ. When your arteries are beginning to clog it happens everywhere in your body and this causes your penis blood flow to worsen and with poor blood flow your penis will start to shrink.

[jan.schaller1958]

Olive. Not true. CAD does not necessarily affect all blood vessels in the Body. I got that from a board certified internist, who said Dr Otero didn't know what he was talking a out.  CAD is a cardiologist's field.  atherosclerosis is an internists field.  Neither are a urologists field. If it clogged up all the arteries and blood vessels, why didn't it cause ED for me at 62? Why don't I have tingling in my fingers or feet, they way Dr Otero said I should? Do you have an answer for than? When I asked Dr Otero why I didn't have ED, at least because if my heart , he probably didn't believe me because he wanted erect pics before and after asking viagra. I think he said, ,,well you might just think you are erect." What? Is this guy for real? Like I can't tell if I'm erect or not? What a moron.  I just took the erect pics he wanted without the viagra today. They look pretty erect to me. I'm sure the ones I later take and send him after the viagra aren't going to look any different. The bottom line is he doesn't know what he is talking about. I am considering filing a complaint with Kaiser about him for his rudeness and indifference and ask that they approve sending me to a REAL Peyroines specialist, like Dr Lue, to do the Xiaflex. I don't trust that Dr Otero sticking Xiaflex in me. I think he's a big mouthed quasi-quack.

[Olive]

We can agree to disagree, that is fine by me.

[jan.schaller1958]

Im not agreeing to disagree about anything. You are flat out wrong. CAD does not cause your penis to shrink. Full stop. What's your cure for CAD? Vitamin supplements? Like your cures for Peyroines?

[Olive]

Jan, you are so annoying person, why would I ever want to help you cure Peyronie's? Why should you be cured? I'm beginning to think that God gave you Peyronie's because he got sick of you too, I'm not gonna mess with God's will.

[jan.schaller1958]

Gods will, huh. Very scientific. Are we now entering the 12th century's knowledge of medical science? I don't think they even knew blood circulated in those days.

And YOU cure Peyroines? You couldn't do that if your life depended on it. If you could cure Peyroines with your diet supplements and whatever voodoo you rely on, you would have won the Nobel prize in medicine by now.

[AlohaPete]

Come one guys. We are here to support and educate each other. Let's keep our eyes on the prize which beating this thing. As mentioned, you should start traction(I recommend Restorex as you only need to use 2 times a day for 30 min), low dose cialis at night, and CO Q10. At the very least, this should keep Peryornies from progressing and perhaps reverse the condition. With regard to Urologists, the long and the short of it is they do not have really effective treatments other than implants and with such few patients having Peyronies they are not well versed. I just switched to the expert in my state and I knew way more than him from my research and other members of this site. What really helped me with my sanity is knowing that worse case I will get an implant and if the surgery goes well will stop Peronies permanently, most likely fix my indents and curve and give me a bionic dick for the rest of my life. However, for now, cialis, traction and CO Q10 is a great start. Good luck to you brother!!

[TonySa]

Aloha, r u in Hawaii?  Peyronies Disease specialists do have other treatment tools such as xiaflex and surgery.  Studies are showing even better outcomes w xiaflex if traction is added.

[LuisFernandez]

Forms of cardio vascular diseases may in fact cause ED. As you said, not all blood vessels are affected so you may not feel tingling in your arms or feet.

https://youtu.be/WQjHeLLeBXA?t=290

The only objective way to know is to have taken measurements of the erect penis when one was younger and healthier and taking them again now.

As we know lack of bloodflow causes cell death and atrophy which would cause shrinking of the penis. It may not be noticeable but if it happened gradually over years then it wouldn't be.

[LuisFernandez]

JJ,

Sorry to hear about your diagnosis, but it's good that it's still early. I would switch from L-Carnantive and L-arganine to 3K MG of L-Citruline, it's the standard these days.

Your doctor should have at least given you 5mg Cialis daily, if not tell him you have some form of ED so that he does. You want this because you want to keep your penis in an expanded state as much as possible otherwise scar tissue will form and cause shrinkage, curvature, and loss of girth.

Your doctor should have also started you on Pentoxyfilline, some studies say it's effective some say it's not. The point is to start earlier and soon so that it has the best chance to be effective.

Also start taking vitamin e, it will not hurt.

Along with oral medication you need to get on traction therapy and vacuum device therapy ASAP.
I would suggest the Penimaster Pro (PMP) and the Somaerrect. You need to start this like yesterday. Do not hesitate and get these today and get started.
The vacuum device may be scary but it's the best chance to avoid loss of girth.

Just be careful to follow instructions for the PMP and don't overpump for the vacuum. The point is to stretch the penis so that the scar tissue doesn't shrink it.

Good luck.

[JJ0]

Thanks everyone for the warm welcome and advice!

I think I identified the areas of plaque now...

I will definitely ask the doctor for Pentoxyfilline + Cialis.

My 3000 mg L-Arganine supplements actually also include 426 mg L-Citruline. Are you sure 3000 mg of L-Citrulin is the recommended dose?

To be honest I am a bit scared to start with traction or VED, due to reports of people who seem to have worsened their condition using them. I will be reading up on this.

[Olive]

I am only aware of one study that used L-citrulline for erectile function and the dosage was 1500mg per day divided into two 750mg dosages. So try to get at least 1500mg.

[TonySa]

Traction and VED should only be a problem if not used correctly.

[LuisFernandez]

Don't be scared of traction or VED. You need to start on this ASAP, stop over thinking it.
The only thing is don't over do it, follow the PMP or RestoreX protocols and you should be fine.

https://youtu.be/82g7ViTj94U?t=2535

Yes, L-Citrulline 3k MG is the standard. It was prescribed to me by my doctor, who you can see here: https://www.youtube.com/watch?v=5CJBDBIAy90

L-Citrulline is better than L-Arganine because it doesn't have to do through a conversion process by your body which would limit its efficacy. I would switch to pure L-Citriulline.

[JJ0]

Thanks for the advice, LuisFernandez. I believe you are right about needing to start traction ASAP. I just wanted to read up on the scientific studies and risks myself first.

I had already read the 2013 Martinez-Salamanca study mentioned in your first Youtube video, which concludes that traction is likely very helpful in the acute stage. Also read the 2019 Moncada (& Levine) paper about using the PMP in the stable phase. Both studies listed little adverse effects. They also include schedules.

I already ordered the PMP.

[LWillisjr]

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