Welcome Spid63 to the forum and thank you for filling out your signature line. Also please download our survival guide -->Survival Guide.

Sorry to hear about your situation. So 9 years ago you developed peyronies and then in 2021 you underwent 2 Xiaflex treatments. So during your Xiaflex treatments did you actually use the traction device as this is standard procedure for helping the medication remodel your penis? How much of an improvement did you see? You may have gotten even better results if you continued with the traction. So how much of a deformity do you have now?

VED could help you somewhat, you just need to give it a try. You say your erections are fine and you are in no pain which is good. In looking for a VED device you need to get one that does have a pressure gauge on it. Also make sure that you do not get one with an automatic pump as this could be dangerous in over pumping. The VED protocol here has you using graduated sizes for pumping with very short holding times after reaching your erection. I have been using the LeLuv cylinders through Kodidistributing. Quality is what you should look for as a lot of them are cheaply made. You also need a pressure gauge on it to never overpum as you can damage yourself.

Search the forum and you will gain some insight into VED therapy from other members. Time and dedication are required though with any peyronies treatment. We adopt the mindset that this is a marathon and not a sprint. 

Mikel7

Hello everyone,

I stumbled upon this forum by accident while researching about Peyronie's Disease.

I have been dealing with Peyronie's since 2015. Interestingly, during that same period, I also went through a divorce. No, Peyronie's wasn't the reason for it; there were other factors involved. In fact, my ex-wife isn't even aware of my condition, as our marital issues began long before 2015, which was just the final chapter of our relationship. Surprisingly, this separation helped me avoid sinking into depression over Peyronie's. Starting a new relationship or getting romantically involved with someone else was the last thing on my mind. To be frank, for years, thoughts of sex didn't even cross my mind, and strangely, it helped my mental well-being.

Between late June and early July 2021, I underwent treatment with two Xiaflex 0.9 mg injections, which helped eliminate the plaque and improve the curvature. Post-Xiaflex treatment, I experimented with traction devices like the Restorex to regain my original length. However, due to my procrastination and lack of time and privacy, I eventually abandoned using them.

Now, I find myself at a stage where I want to rekindle my sexuality, and I seek your advice regarding choosing a vacuum pump, which I'll discuss further in a dedicated thread.

Thank you for taking the time to read this. Best regards.

Hi P11050,

I am suffering from herniations in the tunica albuginea that resulted from a botched Nesbit surgery (not form Xiaflex treatment as was your case, but the result is the same). Have you tried any treatment/surgery for your hernia? What type of treatment did you do, with what doctor and was the procedure successful?

Which doctors do you recommend me to talk to about potencial solutions to my penile hernias?

All your help will be very welcome! Thank you very much.

You are probably not going to like this opinion, but if 3 years have gone and you are still getting worse narrowing, more scarring and new dents you should consider an implant and probably do it as soon as you can to prevent more size loss. I am also doing VED, sadly the cold hard truth is that for severe/moderate narrowing/hourglassing/denting whatever you wanna call it, traction and VED will do very little. One can definitely regain some dimensions, but most of the tissue is gone and will never come back. That's why they do the grafting procedure in cases with guys like us because that tissue will never come back and they hope the graft will help fill in the dented area and make the penis seem fuller again after it has absorbed.

Hi all!

I've been having issues since a couple of months back and I'm still awaiting a urologist appointment, which is in exactly one weeks time. I still have inflammation and pain that comes and goes. My injury site is near the glans on the left side. I suspect it still hasn't healed fully.

I'm having a couple of weird symtoms, one is that after an erection or a certain movement that puts a strain on my penis I tend to feel some tingling or pulsation in the left foot (same side as injury in my Penis). I can only assume it's circulation related. The other is that I can also feel some soreness on the abdomen, (again same side), usually after an an erection. I'm currently avoiding getting erections unless they're random or during wake up.

Anybody recognise these symptoms? what does it mean and how should it progress?

thanks in advance!

 

Hi there guys,

Just a quick update.

Plaque and hourglassing: since February, my curvature hasn't changed, and it seems it has stabilised. The main problem is rather the unstable plaque that I have - at this point I have scarring pretty much everywhere (in some places it's rather limited. The tissue is still soft but you can feel that something is going on there on the surface - mild scarring or something else?). The massive lumps that I have on the left side are still there but less palpable (however the dents haven't changed a bit) and the lumps on the front side have become much more solid. I suspect that they have calcified.

In fact, I had an appointment with my urologist a month ago, and we did an ultrasound scan. He told me that indeed we can see quite a bit of scarring everywhere (the left/front side - more scarring, the back and right side less. He wasn't too happy about it, of course, but was more or less optimistic. Well, I guess he has no choice but to tell me that everything is fine (especially because my penile function is okay for the moment).

It's been three years, and my Peyronies is still getting worse. At this point, I can see that I'm slowly developing dents on the right side. In no time, the left, front and right side dents will connect into a 'belt' and there will be a more visible hourglassing. I'm sure about it. I've restarted doing VED therapy (after 2-3 months brake) to slow it down.

Supplements: I stopped taking Berberin and NAC after something like 3 months because I didn't see any change. Now I'm just taking occasional Omega-3, vitamin D, magnesium (basic stuff for overall well-being).

DMSO: As all the previous approaches didn't really work, and I was becoming a bit desperate, I decided to try DMSO. As the topic was extensively covered on this forum, and it kind of worked for some people, I got very excited. Long story short, I prepared a DMSO solution (70% DMSO, 30% - water with Vitamin C) and applied it for something like a month. To be honest, there was no change in plaque density whatsoever. I think the only benefit was that I was getting more spontaneous erections, as a result.

Today I decided to try something new and prepared a new DMSO solution - 70% DMSO, 20% - castor oil with emulsifier and water + magnesium and water. Honestly, I'm really bad at these things and still not sure whether that's a good solution and whether it's safe. But still curious to see whether it will have any effect

Penile therapy: as mentioned previously, I've restarted doing VED therapy. I also continue doing penile traction (Restorex) every day.

Hi there Del28,

I'm sorry to hear that you're suffering and hope you'll find a solution to your problem.

I know a few urologists who specialise in Peyronies in Brussels (Belgium), also with quite a bit of experience in performing penile surgeries. Maybe they aren't as good as Dr Eid or Dr Trost but they're quite good nevertheless.


I'm not sure how making an appointment for non-residents would work though - but it's always worth trying? I guess you could try sending an email with some questions.

Let me know what you think about it 

Pain is a good thing, I used to take acetaminophen constantly to cope with flaccid pain while sitting but I've realized that this is a bad idea. Now I prefer to be hyper aware of my body's pain signals because it lets me know if something's wrong. I think this is super important when doing traction or any sort of physical therapy because it reduces the risk of reinjury.

Welcome Del28 to the forum and thank you for filling out your signature line. If you haven't done so please download and read our survival guide -->Survival Guide.

I am very sorry to hear about your situation as I and many other men here have experienced your frustration. I do not know of any Dr's in Europe. Perhaps there are some men here who have the knowledge of one. I would say if you are in a position to do so I would recommend Dr Eid in New York. He is a highly skilled urologist on the east coast of the USA. He has also performed more implant surgeries than any other Dr in the world. He is also a Dr here on our forum. Even with a consult you might be able to get some clear direction as to where to go and what to do next. This is one of the perplexing questions men with peyronies deal with all the time. I always say get a game plan and work it. Then see what outcome you get. 

Perhaps you are an implant candidate and then you can decide who will perform it. If I were in your shoes I would go to Dr Eid. He is skilled and has a mild demeanor and genuinely cares for his patients. We hope he never retires Finally remember that this is a marathon and not a sprint. 

Mikel7

Welcome JellalFerr11 to the forum. First thing you need to do is to fil in your signature line -->Signature Line. This will give other members a quick snapshot of your history. Then please download and study our survival guide -->Survival Guide. This is our comprehensive list regarding peyronies and it's different treatments.

Sorry to hear you are experiencing pain and some problems with your penis. I agree on what LostandLooking said about it appearing normal. You say that you have lost length/girth but do you know about how much? You need to get some preliminary measurements for
future reference. 

Pain is an indicator of something wrong and needs investigation. Is the pain in an area that you can pinpoint? In your pelvis or inside an area of your penis? Can you pinpoint a time when this all began? Was there an injury from sex or it just appeared like this?
So your 3rd Dr said that he could feel plaque. Did he do an ultrasound? Do you have normal morning erections when waking up and is there pain with them? Have you fallen on your butt and/or injured your tailbone?

Possibly you may need an erect ultrasound to see what is going on. It is true that you are young and peyronies hits older men more frequently but you cannot dismiss that there is something going on. You may also have to go to another Dr for examination. For the pain you need to look into heat therapy as this may provide you with some relief. Curvatures of the penis are congenital and normal. You say though that yours has gotten worse. By how much? Just try to get a hold of any anxiety and don't obsess over this. Get a game plan and work it out. I would not start and traction or VED therapy at this point in time until you find out exactly what is going on. 

Mikel7