New to this forum and needing some support

[IwillbeatPD]

Hey everyone,

Like most of you, I'm here because I was recently diagnosed with Peyronies Disease this month. Symptoms began in September 2022. Started off with a small bump (which I eventually learned was plaque). Erections and sex was still normal until October when I noticed an indentation/hinge effect and difficulty getting an erection. Even with an erection it seems to risky due to the hinge effect-basically not rigid enough.

Went to one uro, who was incredibly unhelpful and essentially told me to do nothing but wait a year for it to stabilize. Went to a second uro, but much more informed this time due to the amazing people on this forum. That uro gave me tadalfil 5mg, and pentox at my request. I'm also taking arginine and doing manual traction and using a VED.

I don't know any of you but I have to say I am so grateful to be here and to find other people struggling with the same fears/ worries I'm facing. It seems this forum has been around a while from all the old posts from hawk, old man, neo, etc. I finally created an account so I could connect with you all and hopefully contribute however I can to helping with anything I find that works.

I'm just glad to be here and hoping we can help each other in this battle.


My plan right now:

Take tadalafil 5mg, pentox 400mg 3x day, l arginine, VED, heat, and manual traction. I really do believe as much blood as you can get to the penis the better off you'll be-so that's what I'm going for. I'm honestly trying really hard to be positive, my saving grace is knowing there is an implant option if all else fails. I'm 36 and in good health so I am hoping to not have to resort to that. I will say since starting the tadalafil and pentox my erectors are definitely normal as far as rigidity. The only issue is stability which seems to be due to the indentation. I'm hoping with months of work I can beat this, or at least have enough of the plaque decrease so that the indentation lessens.

I would absolutely love to hear any feedback you all have on my situation. I know many of you are veterans on this topic so I would really value your opinions.

A couple questions specifically:

If my penis is pretty much straight and the main issue is the indentation/instability, if the plaque goes away the indentation should also right? My plaque is on the top (more left) part of my penis in the middle. The indentation is on the right though and a little on the top when I look straight down.

Is there anything else I can be doing while in the early phase? I just read a lot about verapamil injections and saw alot of negative comments despite reading articles and studies that were incredibly positive. At what point do you think I should consider taking additional steps like injections? And do you think I should stick to my game plan for now since this just started 1-2 months ago? By the way, my uro (the second who was more educated) said 30% of these cases resolve on their own. He specializes in pyronies, but his figure of 30% is drastically different than the 5% who show improvement when reading the forum here.

Lastly, thank you all again for the opportunity to join a great group of people in the fight to beat this!

Ryan

[Pfract]

Hello!

Welcome aboard! You seem to be very well informed and on top of that, you have a very proactive approach in dealing with your situation. That is good.  
Medication wise you are pretty much on track. But keep in mind that the Pentox hasn't been proven to help with plaque or fibrosis. Evidence is inconclusive. It still helps with erections. If you can, have a look into getting a Restorex traction device. Many members had some improvement with it.

Please check the survival guide on the board and this link: https://malefertilityandpeyroniesclinic.com/peyronies/treatments/

1- I am yet to see members here say and prove, that their plaque went away. It's only the ones with excision and grafting that had success.

2- Verapamil injections were used before but now Xiaflex is the way to go. Having an experienced Dr. injecting you with that is paramount. Also, do not believe in those numbers. I think they are overinflated. Spontaneous resolution seems to be a pipe dream and like you said, the implant is a solution if all else fails and there are plenty of members that had their sexuality, curve and erections restorex after having one. Read on the implants section on some of the diaries for proof.


Please stick around with us!

[IwillbeatPD]

Thanks Pfract.

One other question for you.

Do you think traction is effective if your penis is generally straight but you have plaque and one indentation causing instability and partial ED? I understand the thought process behind it for those having curvature issues but I fear it would make my situation worse if I start bending it all over the place.

Also, on the implant topic...in your experience why are more people not doing that? I see people who have been on this forum for years and years still trying to fight this thing. I honestly don't think I would wait anymore than 2 years before going for an implant. Maybe others in this forum are married or can still have sex, in which case I would understand trying to work with what you have. In my case, I am single and am just feeling out how things would even go with a girl if I made an attempt to have sex. I'm sure I have a long road ahead of me (hopefully positive) while I fight this. But after some time, why wouldn't anyone just go for an implant if they can't have sex? From what I read they can be a true life saver and you never have to worry about erections again. Thoughts?

[Sonic]

Welcome to the forum Ryan. This is a good place to learn more about the disease whilst at the same time have people to talk to, experiences and treatments to share. Your current plan is good, I would personally skip the manual traction as it made my dent worse, but each to their own, if you feel it's working then do as you wish but please do keep in mind it is indeed a risk to further deform your penis.

Pentox + Tadalafil is a good combo for blood flow and VED can certainly help with dents and narrowing based on what I've read here but it must be used with utmost caution in order to not damage oneself further.

There are some doctors in the states who perform a surgery called Extra Tunical Grafting. Look that up. They simply make an incision to the penis and insert a graft which gives back girth to the narrowed area. The surgery has less risks than other surgeries as they do not need to lift the neurovascular bundle while performing the surgery.

[Indenialguy]

Welcome to the community no man ever wanted to be a part of, but is grateful that it exists when he needs it.

You seem like you have the right attitude, I too take solace in the long term implant route if things gradually get worse over the years to come.

Let's hope It doesn't come to that but appreciate the fact that if it is the only way, at least it's an option we have that people wouldn't of had a 100 years ago I guess.

Imagine having peyronie's in 1920, it would just be game over.

Anyway, welcome and good luck on your journey.  

[FrankPD]

Hello and welcome!

You seem to know how to use the search tab, it is accurate and loaded with personal experiences.  You're correct, looking up treatments (googling) will be mostly positive.  It's not until you search here when you find the real results.

Good and positive attitude is important and try not to let the psychology aspect set in.  Keep yourself busy.

As for me, I'm a lifer in this forum now, can't imagine living with Peyronies Disease without this place.  

Good luck and be well.

[IwillbeatPD]

Thanks Frank. What are you trying for your hour glassing? Any success with anything? I see it says you are massaging vitamin E, anything else you have tried? Any changes with your situation since it started or has it remained the same?

[FrankPD]

Hey, my condition changed a little.  My erections aren't as strong, hourglassing is a little worse in 11 months.  The plaque has remained soft.  I chose to continue massaging the area this way since my condition isn't bad.  I was gonna try the manual traction in August but I decided not to in fear of making it worse.  I'm over 60 days of eating better, cutting out bread, pasta and rice.  Cutting back on snacking, which I never really did all that much.  I never had a weight problem, weight loss isn't my goal as I lost 11lbs since.  Not everything works for everyone.  I'm not suggesting just do nothing.  I'm monitoring it with a photo diary also since my diagnosis.  I'm just trying to remain positive, it doesn't affect me mentally like it used to.  

I tried everything naturally as I can.  I've posted here before but it includes:

Low carb diet
No porn
No masturbating (also been over 50 days)
Avoid sitting for long periods of time
More sleep
Drinking more water
Less coffee
Breathing exercises for less stress

I lasted 50 days without masturbating but I had too.  It's been 21 days now.  FYI, gonna masturbate use lube.  Thankfully my sex drive is still super high.  Once in a while I have a strong morning erection again.  I believe it's the result of eating better.

I realized yesterday that eating definitely makes a difference!  I ate for Thanksgiving, especially the pies, sweets and Cool Whip.   Took it easy Friday but the weekend I snacked on the pies more than I would normally and on Monday and Tuesday my plaque was annoying.  Hasn't been that way in so long!  I couldn't figure out why but then it hit me that I ate more those days then I'm used too.  It must be making a difference, today the plaque wasn't that bad.  I will continue to monitor it.

Be well!

[bperez77]

Hello,
I'm new to this forum and was looking for anyone that has done the xiaflex injections.  I have a stable dorsal plaque, mid shaft. 2 weeks ago I had my first injection.  The second on day 2 caused a large hematoma.  Now that the swelling has resolved I've noticed a large area which is very reminiscent of an acute plaque 2cm inferior to the injection site.  I was wondering if anyone had a similar experience.  My urologist is on vacation for two months and the information on the internet is very limited.  I plan on making an appt with someone this week for some guidance, but as you all know.  I'm expecting the "well we just need to wait and see" answer.
Any comments would be greatly appreciated.

[FrankPD]

Hello and welcome!  I have not done Xiaflex but if you use the search tab, you'll find personal experiences.    

Hope that helps.