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I commend you for speaking openly about Peyronie's, I imagine that isn't always an easy thing to do (or to deal with). Best of luck, and I hope you manage to make progress with it. Effective treatment wouldn't get as much airtime as effectice cancer treatments, but it would certainly have a positive effect on the lives of millions of men.

You are right on the mark. What triggered me was the slide in Sid's presentation: "Assessing Fibroblast Content of Tumor". Peyronie's is all about Fibroblasts. I actually typed my reply quite a few times, deleting mention of Peyronies and retyping it. It's a shameful condition for me, and I realize that I have to get over this. Peyronie's affects 1% to 20% of men, primarily because it's (if you're anything like me) - is impossible to talk about.

Again, you're completely right. Talking about the disease is the first step.

It’s not quite the same, but I had a frenulectomy done due to severe phimosis leading to pain and bleeding. It was absolutely horrible, and I was shocked at how hush hush we all treat conditions like this.

Thankfully there’s a straightforward surgical treatment for it, and I hope that you’re successful on your quest around Peyronie’s!

I had to google your condition to empathize, but wow - terrible. I'm truly happy for you that you could solve it! Thanks for your best wishes!

This reminded me of my own story, when I was 15 and had phimosis. I was embarrassed to talk about it with anyone, so in my desperation I posted about it on a forum that claimed to help kids in need of help. Someone responded and gave me instructions that they claimed had a high success rate at treating the condition.

I followed the instructions for a few months and it fixed it. I went back and sent the biggest thanks to the responder. I did not expect to get any help from a random forum.

There has to be swathes of kids struggling with "embarrassing" (in quotes, because they actually aren't embarrassing at all) issues like this. I hope today's internet can provide help to the ones that have nobody to discuss them with.

What instructions were you given?

If it’s similar to what I read: various stretching exercises, couple with creams to soften the tissue

Bravo, I didnt even know about this condition so thanks for bringing it out into the open.

Thank you, I'm seeing that awareness is key.

I am watching DTF St. Louis (which is not a terrible reality show about a third tier city like the title implies, actually a Jason Bateman kind of dark comedy/whodunit), and Peyronie's features in the story. The show also has the first commercials I've ever seen for a Peyronie's treatment, and apparently it's an official ad partner of the show. I wonder if some enterprising show exec decided to go pitch the perfect sponsorship or if the company making a treatment commissioned a show...

A cure for Peronies which is non invasive, works on chronic/non-chronics is worth countless billions.

DTF STL is a fantastic show as are all of the series done by Steven Conrad.

Given your personal experience, I expect you know significantly more than I do, but I just wanted to note: about 20 years ago, I was part of a small company that filmed and edited educational, medical videos for various clients. One of the main things we filmed for a while were Peyronies repair surgeries. They were using a product called Surgisis from Cook Medical as a tissue scaffold to straighten things out. It looks like, sometime in the past 20 years, Cook may have moved on to a new product called Biodesign: https://www.cookmedical.com/surgery/the-path-from-surgisis-t..., but I don't know anything about that.

You may know all of this already, and it may not be relevant to your situation at all, but in the slim hope that my experience of editing scores of Peyronies surgery videos may help nudge you in a new or helpful direction: there you have it!

Thanks for your thoughtful comment! You're right - Biodesign can be used in Plaque Incision and Grafting (PIG) for Peyronies. Unfortunately PIG IMHO has (in some studies I have read) a 50/50 chance of erectile dysfunction, nerve injury, instability and so on. In essence, PIG might be rolling the dice to make a bad situation completely untenable. But again, I do thank you for your comment!

Thanks for the kind response, and for teaching me more about the possible risks and downsides. I was just involved in the editing of the surgical footage, so I never got the "here's the potential drawbacks" speech. I wish you all the best in finding improvement for your situation!

Let me tell you, I've seen more than my fair share of surgery videos involving "de-sheathing" in my research: I don't envy your editing work - but I envy your stomach ;-) But thanks for your reply, the community here can be great at times!

> To see Sid use his motivation and resources to solve his own problem is the core message (IMHO) of the hacker community.

Hacking is about exploration beyond the known, and iterating towards a clear understanding.

Thanks for you kinds words, glad to hear you recovered from Peyronies.

I have not recovered, I took the opposite path to you - when "standard care" wasn't an option - I gave up. But your post has motivated me, and shown me a roadmap of what is possible. Eternally grateful.

p.s. "I'll talk to anyone, I'll go anywhere, and I can be there anytime" - for me, unfortunately $ is the problem for going anywhere, anytime. Perhaps you can help? I've sent you an email - I'm motivated. ;-)

Several years ago I was doing advertising websites, one of our customers was (Pfizer? Bayer? both were customers) they had developed a drug against Dupuytren's contracture[1] and apparently found it effective enough against Peyronie's that we were asked to create a website describing this (possibly off label) use of that drug.

Honestly I have no idea if it was effective or not, nor do I know anything about the side effects, but just in case you were unaware of that particular option I want to put it out there.

From what I can find, doing an online search along that path it might have been Xiaflex/Xiapex by Pfizer.

(Not paid by anyone in this particular business anymore, just remembered it when I read your comment).

[1]https://en.wikipedia.org/wiki/Dupuytren%27s_contracture

Thanks for your comment. I'm aware of Xiaflex, and it's been clinically proven to work against early-stage Peyronies. When the disease has reached the chronic phase (and calcified) - Xiaflex hasn't been clinically proven. Xiaflex is now on-label for treating Peyronies.

My mistake wasn't acting earlier, because I had no idea what was happening. But thank you again for your comment. Thank you!

Fellow Australian with Peyronie's here. Do you know about Dr C Love? I have just had a PIG surgery with him. It is too early to make a definite statement on the result yet, but things are looking a lot better than before.

I live in the EU at present, I haven't heard of Dr C. I've seen a little Doctor Worship on Reddit, but no doctor who can deal with Chronic conditions. In the NL the only option was Tunica albuginea plication (TAP) which results in a loss of length. I've read that PIG in 44% of cases fixes this, however... ugh... surgery. From the bottom of my heart I wish you success in this, and I'd love to stay in contact and hear of your recovery - but how on HN?

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@ aol... so retro ;-) - sent you an email.

Someone who is conincidentally both rich and has cancer tries to find a cure for his cancer by… spending money and being desperate enough about it to be available 24/7.

What about this exactly is inspiring?

"Anything is possible," is the correct mindset when it comes to chronic or incurable diseases.