Significant improvement after combination therapy and rigorous lifestyle

[dent]

Almost 2 years ago, I suddenly developed a curvature of 45 degrees. I experienced the typical pain, ED, and, as many on this forum have, a considerable amount of stress and despair. I went to a urologist and, in a 15-minute consultation, he confirmed that I had Peyronie's disease, that it was very advanced, and that my erectile tissue was probably damaged. His words were something like: "We can try medication, there's no evidence it works, then we can try surgery, which will reduce the size of your penis, and as a last resort, an implant". Well, that was mostly BS, as I will later discover.

I'm so glad I found this forum, which has been crucial in my recovery. It's been quite a long time since I was around here, but I feel like contributing as opposed to "just disappear". I'm just going to say the things I've done to recover and what I personally think had the biggest impact. As a disclaimer, I took a "whatever it takes" approach to get better, with some strong changes in my already quite restricted lifestyle before Peyronies Disease. Also, soon after getting Peyronies Disease, I developed a very painful Dupuytren nodule on my right hand. That was obviously bad news, but in a way, it helped me see the bigger picture. Before, I tried to find the exact moment I had f'~c<+d it up and given myself Peyronies Disease. After getting a Dupuytren nodule, it helped me see that I must have been experiencing some general inflammation that triggered my genetic predisposition to Peyronies Disease and Dupuytren.

--Diagnose:
Many urologists don't know much about the disease. A friend of mine who works in a lab told me that for "rare" and "semi-rare" diseases, it's usually the patients who end up knowing more than the doctors. If you can, find an honest urologist who will acknowledge the limitations of the research but will really try to help you.
I also got an ecography to assess the situation: 3 calcified plaques extremely near to each other, of around 1mm each. (I would develop an extra one in a different place).

--Medical treatment:
Daily treatment: 5mg tadalafil (4 months), 2 20mg tamoxifen (only for 2 months).

*Taladafil was a massive help for stopping the deterioration of ED and then restoring it. There's less evidence for Tamoxifen, but I thought it was worth giving it a shot.

--Antioxidants:
I mostly followed (and I still do) the vitamin supplements that Dr Paulis has shown to improve calcification in a few patients.

*I even contacted Dr Paulis; he ignored my email, and honestly, I have a lot of reservations about the efficacy of this protocol, but I'm willing to take a shot.

--PTT
Restorex. I used it religiously for around 6 months, at least 30 minutes a day, 6 days a week. I followed the tips on the forum to make it more comfortable and use it correctly.

*I think that, along with Cialis to restore ED, this was the most important thing to do specific to Peyronies Disease. My curvature went from around 45 to what it is now, which is probably less than 20 degrees. I don't know exactly, since I haven't measured it again. Girls with whom I had sex before and after Peyronies Disease don't notice the difference. As long as I don't have pain, the curvature is not noticeable, and I don't have ED, I'm really happy about the whole situation, something that many urologists told me was not going to be possible without surgery.

--Lifestyle
This is a big chapter. I read many, many papers. Meta-reviews from Cochrane, loads of articles from PubMed. I got a little bit obsessed about reducing inflammation and increasing overall health. Some of what I think are the changes that had more impact in reducing inflammation and improving overall condition:

• Sleep: I used to sleep less than 6 hours a day. Now I sleep around 7 hours of real sleep (I got a fitness tracker to measure it).
• Diet: I had a vegan diet before. However, now I have a gluten-free, non-white carbs vegan diet with more healthy fat, more protein, plenty of organic foods and almost no processed food. (I've been able to afford this on minimum wage, although it requires more time for cooking).
• Intermittent fasting: Related to the diet, I do what's also known as time-restricted eating, with an eating window of 8 hours a day (which now I've relaxed to 9 hours).
• Exercise: I used to exercise 3-4 days a week at the gym, lifting weights. Now that's 4 days a week of more intense sessions, plus 1 day running
• Daily steps: This is related to exercises, but it's kind of a subcategory. I went from around 4000 steps a day to 12000.

Since I have this routine, I sleep much better and I feel more focused throughout the day. Even with this vegan, non-processed diet and intermittent fasting, I managed to gain 6kg (I was already quite lean), mostly muscle. I think taking care of yourself has an incredible impact. It might be obvious for other people, but no doctor told me, and I feel that exercising more, eating better and sleeping well should be the basis.

[Ukguy1234]

Did you have a sexual injury that you can recall that may have caused it? or on any medications like finasteride?

I'm curious, did you document any before and after photos as evidence? For a lot of guys, improvement can come down to perception and strength of erections at the time of checking which can be misleading.

It's encouraging to hear you think you have had good results but less so when you mention you don't really know what the curvature is.

That being said, it sounds like you are in a much more positive headspace and i'm genuinely very happy for you. The mental battle with the disease is half the struggle after all.

Lastly, do you still use Restorex to maintain? Or was it just for that 6 month period? I'm admittedly a little sceptical of its usecase without the addition of Xiaflex.

All the best

[tek]

Did you have legth loss and dis you see any improvment regarding length?

[dent]

Did you have a sexual injury that you can recall that may have caused it? or on any medications like finasteride?

I'm curious, did you document any before and after photos as evidence? For a lot of guys, improvement can come down to perception and strength of erections at the time of checking which can be misleading.

It's encouraging to hear you think you have had good results but less so when you mention you don't really know what the curvature is.

That being said, it sounds like you are in a much more positive headspace and i'm genuinely very happy for you. The mental battle with the disease is half the struggle after all.

Lastly, do you still use Restorex to maintain? Or was it just for that 6 month period? I'm admittedly a little sceptical of its usecase without the addition of Xiaflex.

All the best

The week or so before starting researching about Peyronies Disease, I had a lot of pain during intercourse and noticed the curvature for the first time. I was pretty drunk, but I can't recall any particular injury. As I mentioned above, developing a Dupuytren nodule shortly after Peyronies Disease served as an indication to me and other doctors that it was a general inflammatory cause triggered by unknown factors. I definitely didn't have any trauma on my hand, and I also don't think I can attribute Peyronies Disease to any sex injury either.

Regarding the erection and perception, actually I noticed that my curvature measurements were much worse after a few weeks taking Cialis. I realised that this was not due to the curvature getting worse, but the erection being stronger and seeing the full effects of the curvature. That's why I only use full-strength erection for curvature measurements.

And yes, I do have photos (although not comfortable sharing those here) and measurements, my urologist even asked me if I was an engineer when he saw how methodical I was calculating the actual inclination! However I stopped the records after significant improvements. My curvature went from 45 degrees to 20 or maybe less now, but it's been quite a long time since I took measurements. Although now that I came back to the forum after a long time and I'm writing this, I think I should update the data to have a baseline.

And thanks! Totally, the mental battle is huge. I'm in a relationship now and the first month or so was still quite painful regarding sex (that's a year and a half after developing Peyronies Disease!). Occasional superficial bleeding (it's not a symptom associated with Peyronies Disease, but in my case it started happening at the same time) and to be honest, just quite a lot of pain after doing it. All that is gone now, so I'm obviously quite happy about it and I genuinely have better sex than at any other time in my 20s, in terms of duration and recovery time needed.

Regarding the use of Restorex: I would absolutely recommend using it. This is not just because I feel it has worked on me, after all, anecdotal evidence is good but it's not science. It's because the research is there, and that's definitely what made me want to try it. However, there's no much data for small curvatures if I remember correctly. In my case, a reduction of over 50% is massive, but I don't think (although I don't know) that you could experience such a proportional reduction if your curvature is just 25. However, it does increase length and it helps to look "more full" if that's something you are interested in.

Did you have legth loss and dis you see any improvment regarding length?

Honestly, I didn't have records before developing Peyronies Disease, so I can't be certain if I experienced any length loss, although intuitively I would say that yes, and that I recovered most if not all. However, I did lose girth, and although I recovered some, I still think I hadn't recover it all. I used to use extra wide condoms sometimes because some of the regular ones weren't elastic enough for my size, and now the regular ones are much less uncomfortable.

*Note: I hadn't take any measurements for quite a long time, so it's possible that some of the length gains I had have been reversed. I think that it was advised to use Restorex 30m once a week for maintenance purposes, which I hand't done because it really is something I don't want to do again.