20y old, Peyronies + 2020 what a combo

Previous topic - Next topic

0 Members and 1 Guest are viewing this topic.

leaningtowerofpisa

Hello, I am 20 years old and was officially diagnosed with Peyronies by Dr. Lue earlier this year. I suspected since about 2019 that I had abnormal curvature and like many, it's been a confusing and unpleasant, to say the least, journey to even discovering what this disease is. I am "fortunate" that so far this disease has not progressed to some of the horror stories you hear. I have yet, fingers crossed, to experience any pain, or any further growth in curvature, currently at about 30-35 degrees, a mix of to the left and upwards (about equal). However, the psychological toll is really growing. I grew up always self-conscious, bullied, severe acne in high school, always shy, and now some grey hair growth from genetics and this. I practice various forms of mindfulness, schools of Buddhist and Hinduism, and like to think of myself a generally "can deal with what life throws my way" kinda guy, but no amount of positive thinking can compete with this disease so far. I understand this is pretty much a lifelong thing in many cases, and we work to stabilize Peyronies and keep it from getting worse but I would like to think there's hope for treatments. Xiaflex seems so scary and mixed results, and with surgery, I am skeptical if it would be recommended for only 30-35d with uncalcified plaques. I am in college and engaging with girls intimately seems very scary. I don't want to further injure myself and I know it's just perceptive, but this is such an embarrassing thing to explain. How do you explain this to a girl properly? I am on one hand so grateful for many of the things I have in life, but staring at my Peyronies every day, contemplating it for hours on end, is really chipping away at my self-esteem. I would like to at least aesthetically improve my penis to be straighter. It seems I'm in limbo: no pain, no progression, and totally soft plaques, but no positive improvement. I luckily have access to Dr. Lue but I feel stuck and lost on how to move forward. He recommends Xiaflex, I understand there's a huge risk however further provoking injury. Does surgery seem a better option to aesthetically improve? I've been stable for coming on about a year, but with soft plaques. I know there seem to be quite a few of us younger guys who haven't enjoyed a sex life yet, deal with this in college and my heart and blessings go out. This is crappy  on top of the ongoing other humdrum of life. I also wonder if from a research perspective anyone has an opinion on the connections of genetic oxidative stress levels, I have an abnormal amount of gray hair, a genetic disposition to Dupuytren's (which great, I'm training to be a professional guitarist, can't wait for this to kick in...). Can these conditions be controlled or mitigated at all through diets, medications, or does behavior have little influence on the progression of these related genetic conditions? I understand that alternative medicine system like Aryuvedic or Chinese medicine (great book called The Web without a weaver I'd recommend for those interested), are quite sophisticated in their holistic thinking regarding the human physiological composition and manifestations of issues like these.

Sorry for the ramble, its nice in a first post to just get these pent up thoughts out there.
Thank you for any advice.

20y old. Pentox, healthy anti-oxidant diet. Stable, but no progress either.

jan.schaller1958

Hi Leaningtowerofpizza,

You know it really saddens me to hear stories like yours. Getting Peyroines at only 20? Gosh, I got Peyroines at 56 (im 62 now), and i had never even heard of the disease until I got it. I thought when I got it that this was just an old man's/late middle age man's disease, but I've learned it sure isn't, being here. Not everyone here is a big fan of my posts (glad I'm not in the running to win some popularity contest here, because I'd be probably come out at the bottom of the heap  :)), but I really try to be honest and straight with people about this disease. Peyroines sufferers have a much higher rate of suicide than the general population, not to mention destroyed relationships over this, and some guys just don't want to even have sex anymore after Peyroines because they're ashamed of how their penises  look.

If you're with Dr Lue you are in the best hands in the world. (He's not getting any younger, so let's hope he hangs around as long as possible.)

You mentioned Dupuytren's. Well, that's what Xiaflex was originally designed for. I'm currently going to get Xiaflex after the first of the year, which is what Dr Lue recommended for me, followed by traction. He said surgery was out because, at my age— the risk of ED would be 40%, and I don't have ED. But, since you are so young, why not ask about one of his plication surgeries? I'll post the link. That would be a better bet than Xiaflex. People on this board have mixed feelings about Xiaflex, but short of surgery it really is the only game in town. Some guys for whom Xiaflex didn't work or surgery, found implants their best only option  (yikes), but the consensus here is everyone loves them. Don't ask me why. They are just not for me.

You'll hear all about Pentox (doubtful it's much good), cialis to help remodel plaque (it's an ED drug only and doesn't remodel anything. Wish it were otherwise). Forget the diet claims, or garlic and ginger treatments or traction with no Xiaflex. How could diet have anything to do with this? You're not old enough to have messed your body up with a bad diet anyway.

I sure wouldn't be worried about the early graying. Some people think that looks good on young people. Peyroines is a wound-healing disorder of unknown origins and a genetic predisposition. I bet if you could really research it, you'd find some guy your family who had it (my dad for example had Peyroines). You'll here a few here say, ,,don't listen to Jan" but I do really care, especially about these young guys getting this awful disease.

So, welcome and best wishes to you.
THIS USER HAS BEEN BANNED FROM FORUM FOR RULE VIOLATIONS

Anton36

I do not understand why do you need to explain this problem to girls. I am 25 years old. I have 25 degree upward bend. I had a lot of girls and long time relationship. No one asked to me about shape of my penis. In addition  sometimes  I had ED.  Sometimes I lost my erection during sex. Btw I do not have huge dick. Just I have 5 inch. Just believe yourself. You are young. In this forum, A lot of old men giving depression to young men. After 50 years old they are expecting excellent sex life. Also someone has some chronical diseases ( such as diabetic). So If I talk about the treatment 1200mg Pentox, 200 mg Ubiniqol, 2.5 mg Cialis and 1000 L Citrulline. Good Luck man!
age 25
first symptoms: Flaccid Pain
official diagnosis 2017 after ultrasound
treatments tried All oral drugs

TDix

Welcome to the forum.  Not a place someone at tour age should be, but life has a way of doing that.  Don't just accept this as a part of life.  You are seeing a highly regarded uro so that is huge.  A lot of guys just go to whoever and don't do the research.  You are younger than my son, and I am open to helping you anyway I can.  Hang in there bud
47 yrs old, 3 yrs diagnosed
Xiaflex w/original uro resulted in a fracture
Excision/grafting by Dr Faysal Yafi 3/26/19
Implanted by Dr Yafi 8/11/20, Titan 20cm + 1cm RTE

jan.schaller1958

Leaningtowerofpisa,

Yes, you'll get a lot of moral support here, and Anton is right. Why worry about what some girl thinks? The good ones probably won't even care. They might notice, but probably won't say anything. And those that say something or think it's weird are the types you don't want anyway. Laugh back at the small size of their breasts and ask what's wrong up there. That would fix them.

And Anton, you gotta know 50+ year old guys DO care about having a good sex life. It's not like you hit 50 and just hang it all up (wait till you're 50 and you'll see what I mean). But, we're all in this together no matter what are ages. I think leaningtowerofpisa should ask Dr Lue about one of his surgeries. As a young guy, he won't have an Erectile Dysfunction risk, most likely.

I should have had this surgery 5 years ago. Dr. Lue suggested it. Now I'm down to Xiaflex as the only treatment options. There are no oral treatments that work. Traction without first having Xiaflex injections is contraindicated due to a high risk of penile fracture (I for that from a doctor guys). https://pubmed.ncbi.nlm.nih.gov/29644164/
THIS USER HAS BEEN BANNED FROM FORUM FOR RULE VIOLATIONS

jan.schaller1958

Yes, Tony, my condition did improve while on Pentox but I don't know the Pentox had anything to do with it. It could have just been a coincidence for all I know. And maybe I'm missing something, but isn't the Peyroines Plaque hard, which is why Xiaflex is needed to soften it up? If you start bending it and it's stiff, it seems to me it might crack or do some damage. Otherwise, what's the point of Xiaflex? So, if anyone is doing this, I'd just say be careful.
THIS USER HAS BEEN BANNED FROM FORUM FOR RULE VIOLATIONS