Multiple indentations peyronies treatment options

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IWinThisBattle

I have several indentations on my penis that seem to be getting worse in the last 6 months very fast. I was diagnosed with peyronies years ago by another doctor and was told to ignore it at the time. It was not a major deal at the time to me and only had one spot that had an indention and very mild hour glass shape.
Now I have several spots on the left side, right side and under side of my penis that cause deformity, reduced elasticity, decrease in size, less rigid and painful erections. I don't have the curvature issue. It's more of cave-ins / indentations that seem to be increasing recently. When flaccid I can feel them and they almost look like swelled up veins but they aren't. I can feel what feels like fractures / indentations when feeling along these. One of the recent indentations is at the very base of the penis on the bottom. I have no issue getting an erection but can see and feel these when erect. Easiest way to describe it is like the hour glass issue but several instead of just one. At the same time I also have an issue with urine dripping after urination and hard to start urination. I don't know if this is related or not. I had a retrograde urethrogram done and they said they didn't see a stricture. A basic x-ray of penis was also done and said no calcification exists. My doctor wants to do another procedure where you inject something that causes an erection and you do another x-ray of sorts while erect. My question is what could this procedure possibly tell us? What kind of treatment options would I have if it found something? Just trying to get an idea of what this would tell us and what can be done to help this and prevent it from getting worse. My concern is because it has gotten so weak (less rigid) that any force / trauma seems to increase / add indentations and scared this procedure make it worse.

Current treatment I've been on for the past 2 months.
2 pentox per day
1 Ubiquinol per day
1 L-arginine per day

welshwales

I have found that VED usage has really helped fill out those dents. Like you I have numerous dents from multiple plaques. No one is terribly severe, but the amount of them has resulted in significant deformity, reduction in size and ED. So far for me, VED has been the best treatment.

james1947

IWinThisBattle

Moved your topic to here, you will get more attention.
Usually for diagnosis the urologists using ultrasound and not X-rays.
The test while inducing erection is to test venous leakages. Do you have ED also?
I was adding to your treatment low dose Cialis and VED

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

NeoV

Iwin,

Sorry to hear about your symptoms, a lot of us suffer from dents, worsening dents, hour glassing and such as you describe. Traction and VED therapy may be very beneficial for you! VED also helped me with the dents. While manual stretching may pose risks (like new injuries)? It greatly smoothed out my dents.

UrsusMinor

I join in with the others here in recommending VED.

I don't know what you mean by "1 arginine per day," (1 pill? 1 gram?) but that's not likely to do much.

The CoQ10/Ubiquinol dose used in the clinical study on Peyronies was 300 mg a day. I have 200 mg capsules, so I do 200 mg twice a day, for a total of 400 mg/day. In any case, you can feel free to be liberal with it; it's not dangerous. (There are some reported cases of insomnia. It can also elevate liver enzymes, but studies of patients with elevated liver enzymes from Ubiquinol show no liver damage--just high enzymes.)

(Some people with mitochondrial disorders are prescribed 3000 mg of CoQ10 per day!)

IWinThisBattle

Thank you all so very much for the replies. I'm very grateful we at least have forums like these for support / knowledge.


Welsh – Do you mind letting me know what VED you use?

James – Thanks for moving this. As far as x-ray vs ultrasound I am not positive which one I have had done but I think it was an x-ray and all he said was it didn't show any calcification and didn't show anything else. I am fortunate to not have ED (at least I don't right now at 30). With that said I'm thinking I don't see any point in letting the doctor do this test on me then. What you think? Also I can never understand who IS and ISN"T good candidates for the Xiaflex and the other shots they have. Why wouldn't my doctor recommend that for me? Just curious if you know.

Neo – As far as stretching are you talking about jelqing type stretches?

Ursus – Sounds like I need to hurry up and get a VED 
Sorry I'll clarify on the dosage. 1000mg once a day L-Arginine pill. 100mg once a day Ubiquinol pill. Pentox 400mg twice a day. I've been struggling with trying to determine if any vitamin supplements I've been taking in the last 6months to a year (multi-vitamin wellness type vitamins and powder) could have cause things to get worse in the last 6 months as it has gotten a lot worse very fast all the sudden. I know it's probably not the supplements but I'm still paranoid and struggling with it. With that said I'm just nervous about taking too much of any supplement for peyronies just because of the lack of evidence out there.

james1947

IWinThisBattle

If you don't have ED you don't need to do this test.
A good candidate for Xiaflex is a not calcified plaque.
I was trying first the oral treatments and VED before Xiaflex.
If you don't have ED. just add 2.5 mg Cialis and VED to your treatment. This is my opinion

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

As far as I know, there has never been any evidence of any supplements making things worse, so I don't know why you are leaping to that conclusion. Peyronie's often worsens for no apparent reason, or just because of local inflammation. If anything, daily vitamins reduce inflammation.

As far as 'lack of evidence' on supplements, there isn't a lot of study on Peyronie's, but CoQ10/ubiquinol at 300 mg per day http://www.ncbi.nlm.nih.gov/pubmed/20720560and acetyl L-carnitine at 2 grams per day http://www.ncbi.nlm.nih.gov/pubmed/11446848 have been shown in clinical studies to reduce curvature and plaque and increase erectile function. So I see no reason why anyone shouldn't take at least that much of these two supplements. If I were you, I'd triple your ubiquinol and start acetyl L-carnitine.

I'm skeptical of the usefulness of arginine for Peyronie's--though it won't hurt you (unless you have severe recurrent herpes). But 1,000 mg of arginine is nothing. Arginine is a common amino acid. The average person in the US gets 4,500 mg of arginine from the protein in their diet every day. Studies using arginine for ED have used dosages of 5,000 mg. Some bodybuilders routines call for 30,000 mg. In this rat study http://www.ncbi.nlm.nih.gov/pubmed/14996430of the effects of arginine on collagen synthesis (essentially a model of Peyronie's), they gave the rats 2.25 g per kg body weight per day. That's the equivalent of 153,000 mg per day in a 150-pound human!

Arginine is recommended by many experts largely because it 'seems sensible.' I haven't found any actual clinical trials of arginine on Peyronie's except for one where 1,000 mg twice daily (even that modest amount is twice what you are taking) was included along with Pentox and traction--which makes it sort of hard to conclude anything about arginine itself.

As many people on this forum will tell you, N Oxide generation from arginine quickly downregulates (in days), so there is some doubt about the effectiveness of arginine. But even if you believe it is effective, the dosage you are taking is a drop in the bucket.

I agree with James on the Cialis. There is good evidence for low-dose Cialis, for example http://www.ncbi.nlm.nih.gov/pubmed/21324095 .

IWinThisBattle

Thank you very much Urs and everyone for the warm welcome and great info! I am going to reach out to the VED guru himself old man to get his recommendation on a device for me.