Hello and welcome to the forum. Please take a couple minutes to fill in your signature under your profile settings. This will help keep you from having to repeat why your here in the forum when you post.

I have sent a PM explaining how and giving you some guidelines for the forum. We are happy you are here and look forward to helping

Stabler

Hello everyone, Thank you all for being here, for this supportive community. The short version is that I have four BB sized lumps along the left undercarriage. I did a string of Soundwave appointments in Los Angeles, (NOVUS) which cost a fortune and offered no beneficial result. I am working now with Mr. Meltings recommendations as described in his thoughtful and generous posts. I often feel pretty hopeless but I am persevering in hopes that I will be able to straighten the curvature. I am doing my best to be consistent with the recommended elements:vacuum, traction, and DMSO+. Feels like a full time job and I am challenged to find both the time and the privacy. No discernible effects yet, committed to the long haul and to progress!

Quote from: Sonic on Yesterday at 08:22:06 PMAnytime bro. Honestly I wish I had an answer. Most urologists don't even have one (lol)

I've read most of your posts on here and we share many similiarities, I am 4 years in and I feel like it has not really stabilized completely yet, the curve did for me, rather quickly actually, it stabilized and has not gotten any worse with the years but the narrowing and dents seem to. I don't think there is much you can do except traction and VED, though if I were in your shoes I would skip traction completely and get a VED with a cylinder that matches your girth well, that way you can force it to stay straight in the cylinder whilst at the same time promoting good blood flow down there and hope it doesn't get worse.

Some people seem to get worsened dents by traction.

The fact that your urologist said you have scarring pretty much everywhere when performing your ultrasound is no good news. That indeed sounds worrying and I am confused as to why he seemed so calm about it. How is your EQ? that is probably what matters the most in your case. As long as you can get close to max hardness when erect you will at least prevent the ''shortening'' effect. (losing length) It is crucial to have the best possible erections you can have and as long as you can have satisfying sex I guess all is good..

Thanks for your response, and I'm sorry to hear that you've been going through a similar experience - it's really not a walk in the park.


Yeah, I've been using Soma Correct VED for quite a bit of time (medium size cylinder), and it feels great. I think my condition somewhat worsened when I was having about 2-3 months break from VED. Now, it's the first line defence that I use every time when the condition begins to worsen - just to stretch the tissue and limit the damage.

Regarding traction, I know that some people have had some negative experience to the point when traction worsened their condition. In my case, it's really difficult to link my worsening condition to traction, as I've never had any traction-related discomfort or pain.

I think one of my dents did worsen though when I was using Restorex. My glans slipped and the corpora contracted abruptly, which later did worsen one of the dents. Oh well. Except for this case, I've never had any bad experience.

As for my urologist, his position is that one should not get an implant unless EQ dramatically deteriorates. My situation is a bit bizarre because I've got quite a bit of scarring and lumps, but my EQ is okayish. With 2.5mg Tadafil I would never complain about my erections. Also, even though there's scarring present pretty much everywhere, it is less concentrated and less dense in some places. So, my guess for my urologist these two factors are important.

I don't have any issues with the curvature anymore but I do have an impressive amount of dents. Maybe I'll upload more pictures at some point later - to illustrate my point, lol. Overall it doesn't look too bad, but one can see that it's almost like it's been broken in several places.

Have you ever asked doctor Trost about your situation? Back in January, I asked him a question about the connection between Peyronies and diabetes because I believed it might have been related to the fact that my Peyronies never fully stabilised and reactivates every now and then (I don't have diabetes but used to have a bit high sugar levels). He mentioned that this situation is a bit unusual for Peyronies and would be more related to the hard flacid syndrome. https://www.peyroniesforum.net/index.php/topic,20010.0.html

Life with a penile implant is kinda like riding a bike with the kickstand always down. 

In the protocols for Xiaflex, there are two hand modeling procedures described: flaccid and erect.
Page 4: https://www.xiaflexrems.com/assets/XiaflexUI/rems/pdf/resources/patient-counsel-tool-Peyronies Disease.pdf

Is there any evidence that the erect modeling (right hand side of page 4 in above document) would be beneficial in general practice? In otherwords, would gentle straightening while erect help someone that hasn't had the xiaflex? Is the same effect gained by using ved you think?

I am still not sold on the risks of Xiaflex. If Trost was an option I would probably be on a plane. I have a list of a few Drs close enough (from Xiaflex site indicating 20+ in the past 12 months) that I may eventually choose one and look into that route again after the bad experience with the jerk Dr. I think I would ask any of them what their specific protocols are and compare to Trost's before considering.

"An entire treatment course of XIAFLEX® consists of up to 4 cycles and takes approximately 24 weeks to complete."
Coupled with
"Within 24 hours after treatment, your penis may appear bruised and/or swollen and you may have mild-to-moderate penile pain. Ask your healthcare provider if over-the-counter medications are appropriate."

THAT seems intense and is a barrier to me. I can't see fitting that much into my life right this moment.

So for now, just wondering if it would help to add some modeling to my current regime using RestoreX, or maybe adding ved to my regime so I have both the right and left hand sides of the document.

Quote from: Mikel7 on Today at 06:32:23 AMWelcome Mikerey to the forum and thank you for filling out your signature line. Please download and study our survival guide -->Survival Guide . This will give you a better understanding of peyronies and it's different treatments.

So it has been 19 years from your injury till now. Also congrats to quitting porn as this is can be difficult to do but you will benefit in the long run!

So it sounds like you do like your 2 Dr's that you have but you think that you upset the one because of the ultrasound mishap? So what did the Doppler confirm or show? Your physical symptoms show you that it is peyronies but how much internal scar tissue was shown on the imaging? You say that there is a ton of scar tissue.

I would stay away from shockwave therapy as it is a money maker for Dr's and it is not proven to help. Stick to traction and VED therapy and reducing body inflammation. How are your erections and do you have any pain? Getting on Cialis can help bring in fresh oxygenated blood and help keep things stretched out.  Of course getting a Dr that is educated in peyronies is good, but if you can find a doc that will work with you is better than none at all. Educate yourself on peyronies and study the forum then make yourself a list of questions for any future Dr appointments. Also adopt the mindset that this is a marathon and not a sprint which I think you understand.
 

Mikel7

Mikel7 you're a stand up guy! Erections at night are painful on the ride bottom side of shaft. It feels like the sheath is strangling the penis, I can give you the dopplar results: she confirmed that nothing was wrong but she said exam was difficult due to my physical habitus: I was 370 lbs at time of the exams. Plus she told me to hold my penis , which I could not because I could not reach it with my hand due to overweight. Also she didn't touch it, she instead rolled the device on my flaccid penis on a few spots. The last time I had a dopplar the radiologist held my flaccid penis, did front back side to side plus pubis and groin areas. Much more competent than this time around lol.

I understand peyronnies has timing too. Like, it has a worse curvature at onset because the plaques may shrink or heal in some time.

I have been a sketch head since this injury, So I remain optimistic about having peyronnies because it's not as bad as penile fracture. I emailed a private doc(urologist) yesterday sharing my sentiments. I guess I gotta pay to play so to speak. BUT I appreciate the view that shockwave is bogus, it saves me a lot of money.

I've been reading up on the shockwave phoenix, but I don't think I shall buy die to my physical habitus: obese, concealment, small in size. If I can't reach down there how can I apply the shockwave you know? Plus it's like a hundred(s) of dollars!

Since this injury I only got laid once. It was done nice chick due to mercy. She wanted to help me out. Man, talk about coming back from the dead. I had an uncle who took verapimil and I would opt for oral solutions. I told dr urologist that I was not ok with certain types of treatment, but that's just come down to personal choice.

No surgery, traction devices because fear of refracture, only injections and oral tablets and cream no shockwave too is what I'm learning.

Anyway I'm staying optimistic, and I thank you for your reply mikel7. It's just a little uncomfortable putting off social events with friends until I feel a lot better. I try to stay low stress and lots of walking at the park. I must pray for this. I appreciate all good vibes too

I may as well tell you a little bit about my psych history: I developed psychosis at the onset of injury, it pushed me past the threshold of what I could handle. I have since gotten professional help. Just to an aside, I accidentally put in 50 pounds due to doubling of my medication. I used to be a healthy 284 lbs, I am nowadays 340 or so. Ty for reading my post. Like I said, dear mikel7 you're a stand up guy while others sit down lol.

Greetings: presently using Verapamil topically..oral arginine and Vitamon E oral and topical. I Have had one noticeable dent in upper right side of my penis that I noticed in February 2024. No pain and erections are (still)good. Doc and I can both feel small spot of scar tissue under skin.

I was quick to visit my urologist b/c I knew this was not normal and I wanted to be proactive, not just obsessive like most of us here understandably are.

My question is: How many others here started this way.. as I described... and progressed to a much worse situation? Also are there others here whose progression did not continue to worsen?

Thanks and best of luck to all
Tom H

What Sonic has said is good advice and this is the best forum on the internet with over 22,000 members and still counting. Your post was long which might have stopped some from reading it. You did not fill out your signature line which may have been a complete turn off for some. This gives the reader a short quick glimpse of where the individual is in their own peyronies journey.

Hopefully you have downloaded our survival guide -->Survival Guide. This will give you a better understanding about peyronies treatments and there outcomes. Also studying the forum will also help you.

One of the biggest problems with peyronies is the mental anguish/anxiety it causes. Some men need temporary help with this through medication for depression and anxiety. Don't be ashamed if you need such an intervention.

Don't do manual traction as you have no idea at what tension you are pulling at. Traction through a device like the PMP or Restorex is all you should use for that. The Cialis will also help you as will VED therapy. Read the forums guidelines and don't deviate from that. Heat therapy does work for the pain and does promote healing. Can you get yourself a heating pad and try using it on low with a towel barrier?

As far as predicting how much you will heal up and if the deformities will correct themselves is impossible to say. Reducing sensitivity in the penis is probably a nerve issue and may take some time to heal up on it's own. Healing for myself with traction and VED therapy has helped me immensely! Also heat therapy has helped with the pain. I saw my improvements after about 18 months of continued use and still now use traction and VED occasionally. You need to get your mind in the position that this takes a lot of invested time and consistency. Sometimes years for an acceptable improvement. This is a marathon and not a sprint.   

Mikel7

Welcome Mikerey to the forum and thank you for filling out your signature line. Please download and study our survival guide -->Survival Guide . This will give you a better understanding of peyronies and it's different treatments.

So it has been 19 years from your injury till now. Also congrats to quitting porn as this is can be difficult to do but you will benefit in the long run!

So it sounds like you do like your 2 Dr's that you have but you think that you upset the one because of the ultrasound mishap? So what did the Doppler confirm or show? Your physical symptoms show you that it is peyronies but how much internal scar tissue was shown on the imaging? You say that there is a ton of scar tissue.

I would stay away from shockwave therapy as it is a money maker for Dr's and it is not proven to help. Stick to traction and VED therapy and reducing body inflammation. How are your erections and do you have any pain? Getting on Cialis can help bring in fresh oxygenated blood and help keep things stretched out.  Of course getting a Dr that is educated in peyronies is good, but if you can find a doc that will work with you is better than none at all. Educate yourself on peyronies and study the forum then make yourself a list of questions for any future Dr appointments. Also adopt the mindset that this is a marathon and not a sprint which I think you understand.
 

Mikel7

The one through Amazon appears like the one sold through the company. Although if you read through the customer reviews they state that the tube sizes can be different and none of the parts are covered under the manufacturers warranty. Customers also complain about the pump handle being flimsy and breaking off. It could be a knock off one compared to teh original.