New Member Here - Really unsure about treatment options

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FlyingButtress

Hello! I'm so glad to have found this forum, as I had only found the Reddit group and have been frustrated by the responses there.

I was diagnosed with Peyronie's earlier this year. Not long after having a vasectomy in January, I began having painful erections. However, my urologist twice dismissed it as nothing. After reading more about possible causes, I saw a specialist who confirmed the presence of plaque and Peyronie's. I have a slight hourglass indentation on the left side of the base, and a slight upward bend so far. Also, I've noticed "hinging" on that hourglass side, meaning when I have an erection, it feels like my penis can easily bend in that direction. There is a large area of plaque I can feel on the top part of my penis at the base. Erections continue to be painful, although I am able to get them without any ED drugs or devices.

Since then, I've seen two specialists, and have also spoken to Dr. Trost on the phone. I purchased a RestoreX recently, but have not started using it. I need to do that but wanted to ask here about oral medications. So far those have been all over the map for me. The original specialist prescribed pentoxifylline 400mg twice a day, as well as l-arginine 1000mg once per day. He told me to look into traction devices, including the RestoreX, but not start them yet, as stretching could worsen things during the acute phase.

So, I did a bunch of research, and actually called Dr. Trost who did a phone consultation with me. He said that he wouldn't recommend taking pentox, as the original study that most doctors based their prescriptions on had some false data in it, and that most doctors weren't aware of that. He also recommended l-citruline over l-arginine, as it was easier on the kidneys or liver (can't remember which), but in his opinion it wasn't effective at all for Peyronies Disease. He said it wouldn't hurt to take it, but that he believed it wouldn't do anything.

I went back to the first specialist with that information, and as soon as I started talking to him about what I'd spoken to Dr. Trost about (one of the inventors of one of the devices HE recommended to me), he abruptly stopped me and said, "Look, do you want him to treat you? Or do you want me to treat you?" So, that was a big warning sign to me. I haven't been back to see him since. He's also a PA, and not an actual doctor, so I wanted to find a better option.

I did find another specialist who was great, and she recommended a traction device AND a vacuum pump. She also recommended not taking the pentox, but instead taking 10,000 IU of Vitamin D3 daily, along with Neo40, a nitric oxide formula. She said depending on how bad the plaque gets, she might recommend plication surgery and a graft where the hourglass is.

Since then, I've done a bunch of reading about different meds, and nothing really has made much sense to me. What's the consensus on what oral drugs help, or are recommended? Should I begin traction immediately? If so, for how long each day? I'm planning to go back to Specialist #2 and ask these same questions soon but wanted to ask the group here now that I've found it. Also, is Dr. Trost still answering questions on the forums? Thanks in advance, and so glad to have found a better support option!
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hope4thebest

I don't understand all the bashing of pentoxifylline. There are multiple studies showing that it's effective. There's also a number of members on this board that have used it with great success. There's even a pdf or word file documenting experiences of many members that had at least some benefit with pentoxi. Some didn't, but many did, maybe even most, I didn't count.
Trauma 2022 August, first deformation seen 2022 November. Very mild curve to the right. Indentation on the right side below the glans. Now hourglass just below the glans. Looking for treatment options.

richie2222

I think consensus on the forum is oral meds don't do much, but don't cause much harm.  I'm on pentox myself.   My urologist prescribed me daily cialis to help with the painful erections and it's helped as he said it increased blood flow to the penis.   Fill out your signature as well, what is your curvature degree?

I know Trost invented the restorex but he does have actual data that it improves curvature a little and yes he's still answering questions.  I don't remember exactly but I think his studies show it improved something like 15 degrees or like 30% but I don't have those figures in front of me.  I'm at about 25 degrees and have started using it for the last 3 weeks.
41 M
20 degree curvature to the left
Diagnosed Aug 2022
Also have BPH (I think finasteride caused my Peronies)
Currently on 2.5mg cialis  and 400mg of Pentox (twice a day)
Started Restorex on 11/17/22

hope4thebest

I don't think it's corect to say they don't do much. There's a thread on pentox here, with users' experiences.
https://www.peyroniesforum.net/index.php/topic,2517.0.html
Trauma 2022 August, first deformation seen 2022 November. Very mild curve to the right. Indentation on the right side below the glans. Now hourglass just below the glans. Looking for treatment options.

FlyingButtress

I actually saw that thread and also the associated word file, but it doesn't seem very scientific or really effective. Like, what were they doing in addition to the pentox? Plus, I'd rather not take something if it's not doing anything. The biggest frustration is the lack of doctors who really know about this.

Quote from: hope4thebest on December 08, 2022, 04:17:04 PM
I don't think it's corect to say they don't do much. There's a thread on pentox here, with users' experiences.
https://www.peyroniesforum.net/index.php/topic,2517.0.html
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hope4thebest

Of course it's not scientific, but there are studies that support its effectiveness.
Trauma 2022 August, first deformation seen 2022 November. Very mild curve to the right. Indentation on the right side below the glans. Now hourglass just below the glans. Looking for treatment options.

Bud luck

Flyingbutress, I developed Erectile Dysfunction several months after the vasectomy, vasectomy causes hormonal problems in some men, seems like the vasectomy affected you like it did to me but yet Urologists keep saying that vasectomies are completely "safe".
About "therapies" for your fibrosis, DO NOT ever inject anything, do not do Shockwaves and be careful with traction
My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46