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#1

Yeah mate, Pygnogenol is the one you want to go for  :)
#2

Okay man. I don't want to come across as doubting of your experience or dissmissive of your concerns. I'm just trying to point out what else could be going on and/or making it worse. Just keep in mind that the same physchological factors that (can) cause or contribute to ED could also manifest as partial erections. There isn't that much of a difference between the two problems. If you are not sleeping well then it interferes with the sleep cycles during which NTE's occur and disrupts the proccess through which they happen. Tight pelvic floor could be causing hard flaccid and also explain the rectal pain and weaker urine stream you report. The issue you described earlier in the thread about what happens when you exercise  - that is not all that uncommon or abnormal - the body shunts blood away from the penis during physical exersion or stress. That reflex action I spoke of earlier of wanting to try and protect it could also come into play there too. Keep us updated after your next doctor's appointment. Take care, take it easy and all the best until then.
#3
Quote from: DaneS89 on Yesterday at 10:52:59 PMYeah I understand and can relate to that feeling of panic and urgency. It would be hard to relax if you're seeing those changes and believe it's a sign of active decay. It just might not be, and probably isn't, is what I'm saying.

Where are you located? Is it cost prohibitive there to see multiple doctors, or even the same doctor on regular basis? Even if its just for the time being while you're having these particular issues and concerns and would benefit from that reassurance.


I'm not really concerned about not getting an erection some mornings in and of itself. There's always been mornings when that didn't happen. It's the big picture taken in totality.

Sadly I don't think this is about stress and anxiety. When I take viagra at night, the expansion isn't entirely absent. I do get some engorgement so my brain does seem to be sending the signal, but it's not able to fill up and become erect. The tissue just doesn't seem to have the capacity to do it anymore. It just feels like a soft limp (but slightly larger) bag of blood lying there. It's very disturbing to feel that when you wake up in the morning, but it's probably even more disturbing to wake up to it looking like it's shriveled to nothing, cold and empty, hiding in a big bag of loose skin, which is what happens when I don't take a pill at night. The fact that I can see such a big difference so quickly is horrifying to me. It's hard to sleep at night because I don't know what I'll see when I wake up.

The sticky, thin skin worries me because it fits dry gangrene, which can take a while to develop.
I don't think the damage is limited to the skin because the whole thing has gotten noticeably smaller. I'm talking an inch in flaccid size. And it feels fragile, empty, and puffy. I could tell that the structure of it has changed. In addition, it's lost all pleasurable sensation. At most, I just feel soreness when I touch it. And I think if it wasn't damaged, I would have at least gotten some fluke full erections. I never get any.

I'm in northeastern US. I've been trying to find other doctors, but it's kind of tiring. I already had depression before this happened. I don't have much money. The one I'm going to right now is only partially covered by my insurance. I'm supposed to be getting an MRI soon and I still don't even know if my insurance will cover it or if I'll be saddled with a big bill.

I've gone to so many appointments already. I wonder if the process of getting help wasn't dragged out so much, and if I wasn't denied early testing, if I could've gotten a better outcome. It's crazy to me that I still don't really know, over a month later. I could have gotten a minor fracture or some kind of infection that started small and spread to the whole thing. Who knows?

When I try calling a new doctor and they say the next opening is a month out, it just seems pointless. I have made a telehealth appointment with an expert surgeon in Texas who takes my insurance later in the month to get his opinion though. I don't even really believe this can be helped anymore, I just don't feel like I have a choice but to keep trying. Even if it's still possible for me to get an implant with the state of the tissue (I have serious doubts because it feels like mush), I think a damaged vascular system in this area will always be a major problem. I don't expect it to ever feel the same again if it survives.  But I'm more than likely going to have to find acceptance in permanently losing my dick. Or I might die from this.
Sorry for all the negativity but I think I'm being realistic. I appreciate that you're trying to reassure me during a crappy  time.
#4
Quote from: Hawk on Yesterday at 11:06:22 PMThis is a hastily written post with almost no proofreading.  It likely jumps all around on this topic, but it is so important I had to unload.  It is meant in a spirit of concern and carilg or I would not have invested the time hunting and pecking it out on a keyboard.

CC, You have to recognize that thoughts like those behind this quote, are in fact the very reason for many of your emotional/ psychological problems.  You have a penis! so you are NOT a man without a penis.  You engage in Self-talk that not only dwells on the problem but you don't even leave it at that damaging practice.  You actually project it as being even worse than it is.   
The quote was shortened by the administrator because quoting entire posts is unnecessary, clutters the forum and violates forum rules.

Mate, I appreciate this so damn much.

I'm struggling very hard right now and this is exactly what I needed to hear.

However, I'm in such an anxiety hole that I can't possibly write a proper reply right now.

But I wanted to thank you and let you know that I will be reading this many times today and in the future.

As my health problems are sadly not just Peyronies Disease. My entire health has tanked these last six months which is what has left me so mentally devastated - and in complete fear my life is over.

Again, thanks for such a thoughtful and caring yet stern post. I needed it.

#5
Quote from: DaneS89 on Yesterday at 09:14:19 AMMindfulness. There are so many moments in life, for most of us and most of the time really, where things are actually just fine as they are and we don't need to worry about our penis problems. We miss those moments to be content and feel okay with the world if we constantly let our worried thoughts invade them. If we relish each of the moments when we have the chance to, then over time and overall the picture and perception of our lives will usually change.

Great call. As since getting this disease it's all I think about, and it robs me from every bit of joy I may have experienced it I simply focused on what was happening in the moment. I'll try and remember this.

As my brain has this unhelpful thing of saying I can not possibly enjoy life with Peyronies Disease. So, I have to worry about it 24/7.

Not helpful.
#6
Quote from: DaneS89 on Yesterday at 07:28:25 AMHey curvedcarnivore,

Most of the scientific interest and research papers are focussed on Pinus Pinaster extract specifically. It's also known as French Maritime Pine Bark Extract. iHerb has a good range and super fast shipping (less than one week) to Australia (I saw on your profile that you're a fellow Aussie).

Random question back to you...assuming you on a carnivore diet as your profile name suggests, where do plant extracts fit in with that? 

Thanks, so I need the Pygnogenol version?

I'll take a look at iHerb. As running low on cash trying to treat this horrible disease.

Also, I had to stop carnivore. Four months of diarrhoea was not for me.
#7
Quote from: curvedcarnivore on Yesterday at 05:14:12 AMIt's very challenging to enjoy life as a man without a penis

This is a hastily written post with almost no proofreading.  It likely jumps all around on this topic, but it is so important I had to unload.  It is meant in a spirit of concern and carilg or I would not have invested the time hunting and pecking it out on a keyboard.

CurvedCarnivore, You have to recognize that thoughts like those behind this quote, are in fact the very reason for many of your emotional/ psychological problems.  You have a penis! so you are NOT a man without a penis.  You engage in Self-talk that not only dwells on the problem but you don't even leave it at that damaging practice.  You actually project it as being even worse than it is.  You can currently have an orgasm.  You can currently have EVERYTHING but penetrative intercourse.  Ask ANY woman which she would choose; if she could be limited to having only intercourse or have all forms of sexual stimulation and intimacy except intercourse. - The VAST majority will give a thumbs down to the intercourse.  Use this time to learn to be a master in all of those other forms of intimacy, and you will make women throw rocks at other men.  When your penis becomes fully functioning, you will think of this period as a valuable time that taught you much about life and intimacy.

I am not suggesting you have no problems.  Life is full of problems.  A large percentage of people you pass are fighting secret battles you know nothing about.  Ask yourself, are you worse off than a guy on a submarine for 6 months, or fighting in Iraq for a year?  For that matter, any of the men who, for a wide range of reasons, cannot have intercourse for a year (terminally ill spouse, living in the outback and your wife leaves you, serious illness or injury).  Most of these carry a loss of everything you are experiencing and much more.

Is it a fore-drawn conclusion that you will never have intercourse (like a man with no penis)?  You know it isn't.  Why, then, do you:
1. Exaggerate your problem
2. Frame your life in the most dismal view
3. Ruminate those false thoughts through your mind over and over like a cow chewing its cud.

You MUST realize that your thoughts (true or false) affect your emotions MORE than reality. If a man cuts in front of you doing twice the speed limit on your way to work, it affects not only your current frame of mind but your whole day and more if you dwell on it.  If you think "poor guy, I wonder if a family member is having a severe life-threatening issue you might go through your day with compassion and gratitude for your family.  If you think, "JERK!
He must think I am some pushover who he is entitled to abuse just because he wants to."  You might spend your day angry, stressed, you might treat others badly.  You might even act out on the spot and risk your life or health.
The only difference is the thoughts you choose.

You might be limited on treatments for your dick, but you have full control and responsibility for your thoughts and how you treat your mind.  If you don't, then it is up to you to prioritize learning the skills needed to improve your life, No MATTER whether it is this or some other adversity that enters your life, because this is not the last one you will face. 

Your emotions can easily wreck your mental and physical health.  They can make or destroy all of your relationships.  Again, you MUST understand that your emotions are determined more by your thoughts than by your circumstances.

NEVER dwell on negative thoughts (true or false)
Challenge your negative thoughts and ask, "is this truly accurate or is it a mental distortion."
If any part of it is a distortion, reframe it.
If it is completely true, devise a plan to deal with it in a positive way then find positive thoughts to dwell on.

Fight the good fight.  Help others do the same.  It is the only decent way to live. 
#8

Yeah I understand and can relate to that feeling of panic and urgency. It would be hard to relax if you're seeing those changes and believe it's a sign of active decay. It just might not be, and probably isn't, is what I'm saying.

Given your current state of mind, you wouldn't be getting erections, with or without PDE5's. Your brain is sending signals to your body that are actively shutting down the processes that facilitate an erection. So not getting erections, even during sleep, is not necessarily proof that the PDE5's can't or won't work, or that the mechanical structures in the penis by which they work through are broken. If you're waking up in a panic about your penis, then as if it's going to get or stay hard.

There have been times where I believed Cialis had stopped working for me, days or weeks even where NTE's were absent. It had me worried that my penis was damaged to an extent that it wouldn't respond to medications. Almost always those episodes coincided with increased anxiety about my peyronies and worsening depression as a result. When that abated, the medication started working again and so did my penis. It would go from no erections, to frequent and sustained, sometimes even inappropriate erections. Maybe that's not ideal either, but what it showed/proved to me is that in those times where my penis went...dormant...it was mostly, if not entirely due what was happening with my mind, not my penis. Kind of like with panic attacks, the more of them you have and survive, you realise over time that the cause is phsychological and not a physical problem, even if the symptoms themselves are physical.

I wouldn't concern myself too much with taking those medications - they are appropriate to treat the symptoms you have described. Cialis is a very safe medication and can be taken long term. Many are on it indefinitely. Ibuprofen is safe also, although long term use is advised against. But if it is working to reduce the inflammation and swelling which are your primary concerns, then maybe on balance it is of benefit? I'm not sure. The concern with Ibuprofen is stomach ulcers with long term use, and if I was worried about what you're worried about, then I wouldn't go into a tailspin about that particular risk.

Perhaps the damage you suspect is superficial - limited to the skin itself. You describe the skin as thin and sticky? Swollen? Even if there is a vascular issue, can you be sure it's the same vasculature that supplies the internal structures of the penis with blood? My urologists pointed that out to me once, when I presented to him with similar concerns about veins and discolouration - that there is a distinction, apparently, and that the two issues (or suspected issues) are not one in the same.

I can't be sure of any of this, I'm not a doctor, and have not seen your penis. But if a few already have, and they not concerned in the same way you are, then maybe...the excessive worry is needless.

Where are you located? Is it cost prohibitive there to see multiple doctors, or even the same doctor on regular basis? Even if its just for the timebeing while you're having these particular issues and concerns and would benefit from that reassurance.
#9

I appreciate the kind words. I try to relax the pelvic floor when I notice I'm feeling tense. However some of these symptoms really seem indicative of structural damage, vascular damage, and possibly a soft tissue infection. Numb and pale are one thing. But I think swollen, hard while flaccid, sore to touch, and thin, sticky skin are a far worse level of severity. I think the blood vessels are severely damaged and the medication helps by dilating the vessels just enough to slightly compensate for the leaks and slow down the process of tissue destruction. All the symptoms intensify if I stop taking medication for a while, but I feel like it's also unhealthy to be taking so much medication. But if I don't, then everything starts to hurt more. Probably hypoxia induced damage.

One of the most unnerving part for me has been waking up with what should be a morning erection after taking a Viagra at night, but it's just very slight engorgement that's limp and mostly numb but with a dull ache. It feels completely detached from my body. It's so unnatural. It feels like the blood just pools and gets stuck in there at night in a very weak soft priapism and doesn't circulate in or out. A few times it's even felt cold. So I wake up feeling panicked. I really want to be more optimistic about this but it seems to only be going in one direction, and I think the damage is progressive and accumulating.
Unfortunately I can't ever really relax or think about anything else in life for too long because I have to be constantly aware of the symptoms in the hope that I'll keep it from getting too severe so that maybe a doctor can eventually get around to helping (although there's probably nothing they can do to help). I definitely notice when I've waited too long to take medication. This is too much for me psychologically.
#10
Just remember the old truism: correlation does not mean causation. Just because two things happen in a sequence does not necessarily mean one caused the other.  It's hard to imagine how pulling on the penis could cause true prostatitis. But having suffered prostatitis off and on since I was a teenager (I'm 52 now) I can certainly sympathize with your situation - it can be quite annoying and uncomfortable.

nemo