I apologize if this isn't the right place for this but I'm looking for advice and an not sure where to go. I came across this forum which seems like a great resource.

I started having erection pain around 6 months ago so I went to see a urologist and was diagnosed with Peyronie's. They prescribed me Rizaben but after 4 months my symptoms are still getting worse (pain is worse, curve of penis is getting worse, and can hardly get erections from ED). I had another followup today and they added another medication which is essentially Vitamin E. For context, I'm living in Japan so I think both Rizaben and this Vitamin E medication are Japan-only medications.

From everything I've read about Peyronie's these don't seem to be common treatments, and it seems like early action is important for trying to minimize damage and impact but I am at a loss for what to do or where to go. Does my treatment seem reasonable or should I be doing more or trying to seek another opinion? I wanted to ask my doctor more questions today but was rushed out and told there was no more time and to ask at my next appointment which is in 2 months... My Japanese is not good enough so I rely on a translator here, and have had a lot of bad health care experiences here so I'm concerned that I might not be getting optimal treatment as they never even mentioned any of the treatments I've been reading about and didn't really provide me with any information about the disease or what I should do/avoid doing, they just told me I have Peyronie's and prescribed me medication.
My curve is not severe yet but I am worried it's going to keep getting worse and want to try and do whatever I can to minimize that before it's too late.

I've heard that daily Cialis can also be beneficial but have also seen other posts on Reddit saying that erections should be avoided during acute phase, and I haven't been able to find much solid information one way or another so I am just confused and unsure what to do. Is it safe and recommended to use during acute Peyronies Disease or is it only recommended for chronic Peyronies Disease?

I'm just looking for any general advice as I'm feeling very lost and stressed and not sure what to do at this point. Any thoughts or advice would be much appreciated.

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

It is sad to say that most urologists are uneducated and untrained when it comes to peyronies. You almost need to be better informed and educated yourself first.

Cialis will help you with healing and inflammation as well as bringing in fresh oxygen. Getting a plan of action in order now can save you from possibly loosing length and girth in your penis. Using traction and VED is usually what is used to help combat peyronies in the beginning. Vitamins and supplements can only help your body nutritionally in the area of reducing inflammation. Living where you do though can be a challenge when it comes to the proper health care and getting any devices to help you combat this.

Get a hold on your worrying and anxiety as these will hinder your healing process. We have all been down this road of worrying about this disease and how it affects our manhood. Welcome  

  Mikel7

Thank you for the reply! I will take a look at the Survival Guide as well.

And yes it seems difficult to get treatment here in Japan, they don't do injection treatments and it seems RestoreX is not available here either so I feel quite limited in my options. I'll try seeing a different doctor and ask them about some of the other treatments and about trying daily Cialis.

I am probably also going to go to a mental health clinic about anxiety and depression, I've had depression in the past but stopped taking medication for it last year, but I feel like all of this is really taking a toll on me mentally as well. I also had varicocele surgery last year so between that and having ED for 8+ years and now Peyronie's it's all very frustrating, all the doctors keep telling me that these are all rare for someone my age and yet I'm getting hit with them all at once.

Anyway sorry to rant, I will look into some of the things you suggested, thank you again!

You are not ranting and it is good that you are being responsible for your mental health. Worrying alone is a big erection killer but you also need to realize that if you are taking any meds for depression that these can also contribute to ED. You are not a rare case for contracting peyronies. The disease does not discriminate when it comes to age. There have been 18 year olds here on the forum as well as 70 year olds who have battled this disease.  

Thank you    when I was on antidepressants last year I mentioned that I wanted to avoid ones which would impact ED since I struggle with that so they tried some different ones that are supposed to not have an effect on that, so I'll be sure to emphasize that when I consult again this time. And maybe it's not the right mindset but I'm also at a point where I feel like even if the antidepressant does worsen my ED, I've already been pretty much unable to have erections or sex for so long now I feel like it can't really get much worse anyway (but maybe that is naive)

I agree w/ Mike, I think the daily cialis is good to promote blood flow & nocturnal erections, and taking it easy on the traction and VED in the acute phase. I panicked when I discovered some nodules and overpumped and used a traction device called PMP that I strapped to my leg and walked around town with it on but think it caused more damage. During acute phase VED and traction might help but in my humble opinion you shouldn't go as hard as after it eventually subsides and you are left with whatever scarring happens during acute. Eventually I went to a urologist who recommended VED and restorex, which is what I do now 1x per day and wish I had gone straight to restorex (expensive) instead of some of the other traction devices out there. For VED I use a SomaErect stf. They can probably ship it international.
Also- if you've had ED at your age for 8 years, you might take a look at lifestyle.  How is your diet, sleep, exercise and bodyweight? Are you drinking or smoking? Testosterone plays a major role in libido and erectile function, as does cardio health. You could also potentially schedule a telehealth visit with a doctor in the US.

Thanks for the reply!
Unfortunately RestoreX isn't available where I live (Japan), I've been thinking of trying another traction device (looking at Penimaster Pro which I think is PMP?) but I've heard the others aren't as recommended as RestoreX so I'm not sure if it's worth it. If it's better than nothing I'll try it but definitely don't want to do it if it might cause more damage. Do you think it would be better than nothing?

As for ED I'm really at a loss for what the issue is. It started extremely suddenly around 8-9 years ago, I went from having great erections to suddenly I couldn't get one at all overnight and it has never gone back to normal.
I eat healthy, exercise, never smoked, quit alcohol a few years ago... I've seen several doctors about it, had blood tests multiple times and testosterone is fine every time, it always gets to a point where the doctors just tell me they can't do anything about it. I feel like there is something physically wrong but when I ask the doctors about that they say everything seems fine and that it's rare for someone my age to have physical causes for ED (which is not helpful cause even if it's rare it could be possible, but I don't know what to tell them)
I've had ED in the past, but at that time it was psychological, and taking Cialis just once when I had sex pretty much got me over the mental issue and I never had issues again, this time is definitely different and not psychological as it feels physically wrong, but I don't know how to describe it or what could be wrong.
Sorry for the long post

I can't say for sure but think that cialis (tadalafil) at a small daily dose would not be a bad idea if available, but I can't substitute for a doctor. Unfortunately it sounds like the urologist you have is not super on board with newer therapies. I have tried PMP but did not like the idea of having my penis in a device for 6 hours a day.

Dr. Langdon Trost, who posts here, has recommended starting traction therapy as soon as possible. You can also do it manually by hand (see posts by user NeoV and youtube videos by NeoMan, who also lives in Japan I think).

There is a thread on the forum for Dr. Trost, who helped develop Restorex, who provides a ton of good advice, including non-restorex related:
All of Dr Trost's posts
List of Trost YouTube videos
Dr. Trost's thoughts on efficacy other traction devices

I'd recommend reading some of Trost's posts on the topic of traction. You might also post a question on the Questions for Dr. Trost thread asking about whether he'd recommend Rizaben for peyronies. Sounds like it was developed for scarring. Taking oral meds to treat penile scarring (assuming you have it) can produce unwanted side effects. Is there a noticeable lump or scar causing the bending?

I'd also recommend this youtube video on a podcast called Diary of a CEO, interviewing a urologist. Lots of discussion on dealing with ED. Sorry to hear the ED has no discernible cause. Hope this helps!

Thank you, I will check out the links you shared! I don't like the idea of using a device for that long either, but I work from home so it's technically doable if it would help. I'm going to try visiting another doctor this week to ask about daily Cialis.

Unfortunately I think treatment for this is very behind in Japan in general. It's similar for ED, I had to go to multiple different urologists before finding one who would actually do a physical check on me, the others would just prescribe Cialis or Viagra and wouldn't perform any tests beyond a blood test.

And that's a good idea to ask Dr. Trost about Rizaben, indeed it seems like an anti scar tissue drug. I do have hard lumps on the side that I can feel when it's flaccid, and it seems to be getting worse (it used to be just on the top, now I can feel them on the side too). I asked the urologist at my last visit if the lumps could be anything else I should be concerned about but he didn't do a physical check or anything, I guess it's most likely the Peyronie's though...

Anyway thank you for all the suggestions it is very helpful! The amount of information out there about this stuff is overwhelming so it can be hard to know where to look or trust sometimes, so I appreciate all the resources you've shared.

Yeah that sounds difficult, even in the States you often need to advocate for yourself otherwise a lot of doctors are on autopilot and don't go out of their way to try to solve your issues wholistically. I hope you have luck with your new doctor and see positive results with the program you choose to follow!