My half success story + Creating Anonymous Support group

[Akuma]

Hi Everyone.

Let me start with this: Everything is going to be okay. Don't give up hope now. The journey is hard, but hang in there.
It's crazy. I have been thinking about posting on this forum since I was diagnosed with peyronies disease in September of 2023. I feel like saying my journey has been a roller coaster is an understatement. At the start, I was diagnosed improperly by a couple different urologists. Some didn't believe I had peyronies, and others improperly assessed my degree of curvature. Reflecting on that part of my journey, it surprises me how mean and patronizing some of those doctors were to me.
After these experiences, I became determined to find a well versed doctor that truly cared about helping me with my affliction. That was when I found this forum and learned about Dr. Landon Trost.(To all of you who have posted before, thank you.) Let me tell you: That dude knows what he is talking about. He told me that I had a complicated S curve affecting three different parts of my penis. It started towards the top left, and made its way to the middle of my shaft causing a 20,20,30 Left Upwards curve. What was interesting is that it looked worse due to how the curve twisted everything around.
After 2 trials of Xiaflex he destroyed 2 of my three curves, and significantly lessened my upwards curve to maybe like 10 degrees. I decided to leave the 10 degree upwards curve, because in my opinion, it was kinda like a permanent buff in a video game. Apparently a slight upwards curve it pretty awesome. Trost told me we could completely get rid of it if I wanted to, but I was happy with where I was at. I didn't really want to lose it.

Here's the tough part of my story.

Two days ago, Trost and I came to the conclusion that I was developing another curve, this time on the (middle) bottom right of my Shaft. Truthfully, I'm scared. I'm scared to have to go through this again. Not knowing how bad it's going to be in 6 months. I'm also optimistic. I have a great circle, and I know how talented the entire team at the peyronies mfp clinic is. (Trost, Jake, Zach if you somehow ever see this, you guys are the GOAT). At this point I'm terrified mostly of the indentations from the scar tissue. I also know that worst case scenario there is always an implant which isn't even worse case scenario because they are super cool.

Regardless though, I feel like I'm not understood by my circle. Many people don't realize how mentally taxing this disease can be. I'm not sure if any of you are interested, but I think I want to create a anonymous support group. Personally, I am a huge gamer (if you couldn't tell by the name), and have been thinking about starting a twitch or something to stream video games while we all get together and talk about our experiences, success stories, and help people new to the disease find hope. I would love to hear if this is something you guys would be interested in?

SO HERE'S THE TAKEAWAY: For those new to this disease. There are many different avenues for success. Everything is going to be okay. Don't give up. The anxiety and restlessness you are feeling is okay, but don't let it stop you from achieving success and your dreams. Spend your energy focusing on other things in life, and once your plaque solidifies, lance that fool with xiaflex from a well versed peyronies specialist like Dr. Trost. If that fails you, there are alternatives out there for you too. But whatever you do, don't give up on yourself. I hope this post reaches the right people. Keep fighting everyone. 

[Pfract]

Hi Akuma.

Welcome aboard. Seems that you have taken the right steps to address your condition at this point and i am hoping that Dr. Trost is able to continue to offer you the care that you deserve.

Members of the board are obviously free to pursue their personal interests and online projects outside of this board. But i don't think that you will find many gamers or folks which are into twitch streams in here. I can be wrong, for sure...

[Mikel7]

I agree