Hello everyone. Hope you're all doing okay. Here to introduce myself and share my story. I was diagnosed with Peyronies in October of last year (I actually diagnosed myself with it after having Dr Googled the telltale symptoms and then had it confirmed by 2 urologists). I'm just going to jump straight to it - The condition has devestated me. I feel ruined and deeply depressed by it most of the time. It colours my world in a dark and ugly way. I miss my old (sex) life and what I used to enjoy. I miss not having to worry about and manage this dreaded disease. It has consumed me. As much as I try, and persevere, I honestly don't feel up to the challenge it has forced upon me. I wasn't good (mentally) even before peyronies. My reserves of mental strength and energy were low already and then this happened and now they're deep, deep in deficit. It just feels like a nightmare I haven't woken up from. I know this might sound a bit extreme, but that is just my reality at the moment and how I feel about this. The psychological impact has been huge. I hope that maybe some of you here are kind enough to share some advice and wisdom that could help steer me through this (the emotional and philosophical aspects). I do have a good therapist, and they try to support best they can, (and it does sort of help) but its not coming from a place of lived experience. Its such an isolating condition for its sufferers I feel in that hardly anyone in our lives would be able to relate.

To the more practical (or should that be physical?) details of my peyronies. My curve is mid shift with a line/indentation right the way across the top and pinches in slightly either side of that line (so mild hourglassing) It bends up at about 25 degrees. It like my penis is segmented. The half of it closer to the glans sort of bulges out on the sides too, so I'm not sure if I have lost girth in the lower half or if the bulged sides in the other half are due to underlying plaques weirdly somehow adding to  girth. Theres this thing about aspect and angles too - when I stand up, fully erect its as if most of my peyronies imperfections seem to dissapear, if only for a brief moment and while in that position. But when I'm in a semi-erect state or 'on the way up' its a different story and the deformities are apparent.

Its all just so confusing and complicated and this condition frustates me because I'm someone who likes to understand things. And it keeps changing, which adds to the frustration and torment. It might be wishful thinking but I could/can swear the Pentox was/is making a difference to soften the curve. Not just the feel or it but the look of it. But then in that same time since I've been taking it there a new plaques that have formed. And the biggest issue is that my functionality is greatly reduced. My size is almost the same and the visible changes alone I could almost handle - I am fortunate in that (as the urologist said during exam) I have length and girth to lose, and the deformaties are by objective measure quite mild - but if I can't feel pleasure from using it then...thats cold comfort.

I hope to regain my sensitivity and the 'reactivity' of my penis. Its the most disabling feature of this condition I think, for me anyway. It just feels like a bone down there (when erect). And when I'm flaccid I feel uncomfortable in my underwear, having to adjust myself all the time. The tip of my glans feels uncomfortable and sensitive in a not good way when it rubs or moves against my underwear. I have to pull my foreskin forward all the way so that it doesn't touch. I also get a cold sensation down there at times which I find really troubling...hasn't fallen off yet though. But it just adds to the list of things to worry about and the wicked ways in which this condition manifests. Its not just about sex and how peyronies has changed that, I'm uncomfortable and in pain outside of those times too. Theres just no respite.

Anyway, I will persist with the Pentox and the whole suite of other supplements I'm on and do my best to maintain the diet and lifestyle changes I've made. That is difficult though - there were a few vices I enjoyed pre-peyronies that had to go in order to give the treatments a chance to work. The catch 22 of it all - the select few things I enjoyed before had to be sacrificed for peyronies...to continue them would worsen the condition...but to quit them leaves me feeling deprived and depressed, which also happens to be how peyronies makes me feel.

I do want to get more serious about my health though...go further with it to improve blood flow in particular. I don't feel confident to start with traction again or VED until I have reached a state of 'optimal' or 'peak' blood flow, to accommodate the strain and reduce risk of injury (maybe I'm more worried about than need be?). I have both the PMP and RestoreX devices but false started with both of them because I wasn't ready either physically or mentally, I'm not sure.

Alright, that's enough from me for now. Thanks to anyone who sat through and listened to my ramblings. I'm usually more succint in my writings but right now Peyronies has got me down and I had a lot to get off my chest. I hope to have some nice and meaningful chats with you fellows, and contribute something useful of my own if I can. I look forward to it

Cheers guys

Dane

Priapism only damages the penis after >5 hours of CONSTANT, FIRM erection.  If you partially lose that erection and then return to a full erection, that 5-hour block is broken.  If your penis worked the next day, it stretches the imagination to think there is any issue.

This topic has been moved to Penile Implants.

https://www.peyroniesforum.net/index.php?topic=19776.0

Whether it is someone who mocked a spouse over breast removal, penis issues, a deformity, disability, or any other issue beyond their control, that person is NOT fit to live with unless they are ready to change and work hard at changing. That starts with:
1. Recognizing that they conducted themselves in an inexcusable manner
2. They feel genuine, personal sorrow for their conduct
3. They apologize
4. They dramatically change

Otherwise, I agree with Bensimon. If I had the world's most perfect penis, I would not stick in an evil person who would demean someone they are supposed to love. Your penis is NOT the problem with this relationship. Your penis only revealed the problem. You say you don't understand why she does not want to be with you anymore. The answer is that we can't understand everyone. I don't understand Hitler, Jeffrey Dahmer, or Charles Manson, or many other less notorious people. The question is WHY DO YOU WANT TO BE WITH HER?

I am not saying that you are a perfect part of this marriage. Your drinking only hurts you, and it would harm a good marriage. However, that can not justify her behavior. Unless you were attacking her in a similar evil manner, there could be NO EXCUSE for her behaviour.

On the topic of implants. If you have insurance that will pay for a revision, I would get a 3-piece implant from an EXPERT SPECIALIST. Most women would never even know you have an implant unless you told them.

You will never lay a plan for moving forward and improving your life until you stop drinking alcohol. It undermines your health, your goal-setting, planning, and prevents you from following through on your plans.

Quote from: nevertheless on Yesterday at 08:08:37 PMNot sure how long you've been doing it, but after a few weeks, it solved itself for me and I can bend with long rods since then. Just took time to stretch and such. But you can order a different top piece for cheaper than full device and swap between straight and bent time. 

Also, disagree greatly with last post. I have seen tremendous growth and curve lessening from RestoreX and Cialis. It has made my symptoms basically go away besides slight curve. But not accompanied by any pain or discomfort, so HUGE win. Won't work for everyone, but not need to make sweeping conclusions and just say go right to surgery imo.

Thanks. That's really encouraging.

Personally, I wouldn't let any doctor that does PRP injections for Peyronie's lay a hand on me. There is no medical evidence or case reports to support the use of PRP for Peyronies Disease and any practitioner offering this is very likely simply trying to make a buck. It was snake oil when it was marketed as the "Priapus Shot" here and elsewhere, and that was years ago - you can find the threads through the search function.

It sounds like you guys are dealing with questionable practitioners. I'd be extremely cautious before either giving them your money or entrusting your health to them.

nemo

Quote from: JR678 on Yesterday at 07:08:36 PMIn my experience, the rods won't work. Neither will VED or drugs. If you research the physical issue, it's not something that can be rectified by bending in the opposite direction. Surgery is the only way to straighten out. However, even surgery does not get rid of the indents. You need to consult a specialist.

I had a 30° bend. I tried everything. Finally, I stopped resisting and surrendered to the idea of surgery. I started to do my research. I found a surgeon in my local area, Toronto, and I made an appt to see him. He fit me in three weeks later. Of course, surgery is not fun. The healing process was a bitch. But like everything else, including life, it's over in a blink of an eye. A year later, I still have the indents, but I'm straight and pointing up. I have a regime where I keep it pointing up at night when I sleep with something I found online, not those super uncomfortable rods! That regime helped tremendously with the healing process.

My advice is to start putting in effort to find a surgeon in your area. Don't resist surgery, its the fastest way to get straight and in my experience its the only thing that works.   

I appreciate your perspective, but I'd like to try alternatives to surgery before doing something that drastic. At home traction is the first step, but I'm also considering flying to Utah for injections in the New Year.  That will be a significant expense, but I have yet to find a urologist in my area who seems to be as focused and expert in the condition

You still have not included your surgeon's name in your signature line.  Since different surgeons have very different protocols, it is an important bit of information.

Quote from: IwillbeatPD on December 06, 2023, 09:47:06 AMOkay, small victory from yesterday and feeling better. I realized yesterday the CONSTANT throbbing in my sack was from my pump simply resting on the bottom of it. Once I lay on my side or support it, it goes away. So that was a game changer for pain. Ended up tucking a pair of boxer inside my briefs and under my sack lol.

My actual shaft stopped aching as well.

A couple of points.  The scrotum lining will toughen up, but right now, squeezing it against a ridged bulb will understandably make it sore.  Since the scrotum is very loose, one tip is to slide the scrotum over the somewhat stationary pump bulb so that you are not squeezing the pump with the same two sections of the scrotum every time.  You can even change up in the middle of a cycle.  Also, for some reason, a wet washcloth between your hand and the scrotum helps.

I get the impression that you are or intend to start tucking your penis down.  I would NOT do that for several months. Based on several pieces of information, I maintain that will give you a less stable erection angle.  I think you said your natural erection angle was about 3 O'clock.  Unless you do not mind an erection angle of 4 or 5 0'Clock, I would not point my penis down.  If I am wrong and you keep your penis pointed up, you lose nothing but a bit of inconvenience.  If I am correct and you point your penis down, the results are irreversible.  That does NOT mean your penis will not work.  It will still be firm as the penis of a horny 17-year-old, but it will affect the aesthetics.  If you insist on pointing it down because someone told you it is not an issue, I would at least not do so for a couple of months. When you do, there is a compromise technique that might minimize the impact on an inflated angle.

Quote from: boston on Yesterday at 10:36:44 AMI have this same issue. 

Not sure how long you've been doing it, but after a few weeks, it solved itself for me and I can bend with long rods since then. Just took time to stretch and such. But you can order a different top piece for cheaper than full device and swap between straight and bent time. 

Also, disagree greatly with last post. I have seen tremendous growth and curve lessening from RestoreX and Cialis. It has made my symptoms basically go away besides slight curve. But not accompanied by any pain or discomfort, so HUGE win. Won't work for everyone, but not need to make sweeping conclusions and just say go right to surgery imo.