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Author Topic: Progressing RAPIDLY *very long*  (Read 1526 times)

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peyronny

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Progressing RAPIDLY *very long*
« on: February 27, 2016, 06:30:28 AM »

Over the last several weeks my peyronies has been progressing very rapidly. I'm not sure if this even heard of but it seems to be getting worse on almost a weekly, sometimes daily basis.

For me this all started in 2012. First I didn't know what it was. I may have injured myself but at the time I thought nothing of it. And there was just a part of my penis that just felt odd. Like an area that would stay soft even when erect. However, I was still able to do what I needed to do. I was just trying to be careful not to make whatever this is worse. Obviously, I failed.

Anyways I was diagnosed by uro first time on just a list of symptoms. He just told me to take Vitamin E and that was it. I had already had this area for probably a year before even visiting the uro. This was late 2012-early 2013. There was no curvature just lumpy area that wrapped around slightly to the left side of my penis. Like a ring, but not a complete circle. It was't that bad at the time, and he told me to masturbate regularly for my prostate. He said whatever I'm doing, do more. I don't know if he realized I usually did at least once a day, some times 2-3 but anyways. It seemed relatively stable for a while really until last year or maybe towards the end of 2014. I'm bad with remember dates, so all these could be wrong for all I know, just a general idea.

In the past 8-12 months I have been getting regular newly formed plaques. Certain things seemed to trigger it. I may have made things worse by "checking" the areas to see if they are getting bigger. Probably not a good idea to rub on the areas too much, but it stressed me out so much I just wanted to know the progression or if it was getting better. The thing is because of my weight my penis is "buried" inside of my scrotum. Basically, unless I'm erect or I sort of tuck it out, you can't even see it. It's embarassing sure, but it's just the reality of it. I've lost 150 pounds past year and I've seen no significant change there. But I'm still overweight. Anyways, point is when I "check" it I may have been making it worse.

But other things seem to as well. Often times even making new lumps on the spot. Idk if this is normal but I can actually feel them forming.

I have asthma and throughout the winter, it's always hell. I've gotten kind of used to it. But one thing I've seen is coughing can cause new lumps/plaques. Idk if it's the pressure, and I have high BP, but I've literally felt a rupture type of sensation and pain following that. Then within the next day or 2, there's a lump in the area.

Going number 2 can seem to make it worse or make plaques bigger.

Sitting down for long periods of time. Maybe that has something to do with my "buried" penis. I'm not sure. But I have to be careful sitting down and standing up.

Walking even induces pain. Probably weight related, when I walk maybe it's just the skin touching a plaque or moving under the area.

And now literally over night, I have my first actual curvature it seems. It doesn't seem as big as some others I've seen but my situation is a special case. I have lumps almost all over my penis now. It's hard to pin-point the plaque because it's like one giant plaque. Before though I just had lumps and dents. I was still able to move my skin down to masturbate.  I didn't really have a curve so much before. Some of these lumps feel golf ball size tbh.

After waking up with the most deformed erection to date after it died down I went and took my supplements and Pentox doses. Tried to relax for a little bit and got it up again and I wanted to see if it was even possible to ejaculate at all at this point.

The skin is so tight and rough at this point, it's hard to move the skin down. And it almost feels..too hard if that makes sense. I've been doing this very delicately when I masturbate. Just lightly stroking, and trying as much as possible to avoid the plaques. My penis just feels swollen when I'm erect now. The back of my penis sort of balloons out. There's a dent/hourglass shape on my left side. The front of my penis is just one mess of plaques. On the top right side of my shaft there's a massive lump. It was growing down but after masturbating tonight it's much bigger. Hoping it will at least return to the way it was. My junk was already small, now it's smaller.

Anyways, I was able to ejaculate. But it's the first time it was really consistently painful. Before I would get an occasional sharp pain and it would freak me out.

I lost my erection, get it again, and so on. I was basically just lightly rubbing my penis to get off at a certain point.

When I finally ejaculated, it felt extremely tight. Basically all these plaques bulged as it happened. Felt like the skin was going to rip.

But what I'm mostly concerned with at this point if I would even be able to penetrate *at all.* I find myself lowering my standards with this every day, of what I find acceptable. But if I can't have sex at all or enjoy it, i just don't know what to do.

My erections are not painful though. Just feels too tight or almost swollen. But the pain does't start until I try to masturbate.

Here's everything i'm taking currently:

Pentox

Vitamin E. I've also tried to incorporate foods with Vitamin E. Discontinued for about a week because was wondering if I was taking too much.

L-arginine.

Acetyl L Cartinine. Off and on. Not sure how much this helps but just ran out of it again.

Gingko

Ginseng.

Previously tried:

Co Q-10. Was taking a while but ran out recently.

Tried Paba for a short while but ran out and never reordered.

I also discontinued my atenolol some months back as it's a beta blocker.

Any advice at all would be appreciated. I've never been so scared in my life. I'm young and still care a lot about sex. I'm a virgin though, and the big motivation of losing the weight was to look better, be more confident, etc. This has put a huge dent in that, pun intended.

I've had a hard life. I've been through a lot. Not going to go into all that here, but I can safely say of all the things I've dealt with, I've never felt worse.

I can't even enjoy things completely unrelated to sex. Because once you try and do that you realize it's permeated just about every facet of life. How many movies or TV shows don't have love scenes, attractive women with sexy clothing, or anything like that? Everytime I watch TV there's victorias secret ads.

I've considered therapy or somethinng but that would be like accepting defeat and just trying to avoid the sadness that comes with this. I don't want something to numb my feelings on this and make me not care. I just want my sex-life or lack thereof to return. I don't want to die a virgin.

I see a beautiful woman now and it's just frustrating.

I actually genuinely think I like cuddling more than sex itself. However, I like it because of the arousal that comes with that. Now, feeling aroused isn't so much fun.

My urologist was supposed to refer me to someone else, a sexual dysfunction doctor, who he said would know more about this and other options. He admitted he is not the expert on this condition. He never got back to me. I kind of just forgot about it a while because it was at least stable. I guess Monday I'll be calling his office to ask about that. 

Honestly, I'm not even sure if the last resort surgery is even possible if it ever gets to that point because of the way it's buried. I thought that would improve with weight loss, but nothing so far.
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Stabler67

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Re: Progressing RAPIDLY *very long*
« Reply #1 on: February 27, 2016, 10:54:03 AM »

Hi,

I am going to strongly suggest that you seek a Urologist that specializes in Peyronies.
Start here: http://www.peyroniesforum.net/index.php/topic,4063.0.html

I saw that you were on Pentox that was prescribed by your regular doctor, are you still taking that, and if so at what dose per day?

Your symptoms need to be addressed by Peyronies specialist, I know that we preach this all the time but the truth is, it is truly the best way to get and keep control of this disease. I am not sure of how the Asthma or a bowel movement would come into play with affecting the Peyronies but maybe other members can shed light on that.

Please start your search for a new urologist.

Stabler67
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peyronny

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Re: Progressing RAPIDLY *very long*
« Reply #2 on: February 27, 2016, 12:57:29 PM »

Quote deleted by moderator. Please read the forum rules.
Answer by click on "REPLY" and not by click on "Quote" button


I've seen that list before. I know there are a couple in Atlanta and Nashville. I'm in Georgia but it's still about a 2 or 2 in half hour drive. Thing is I don't drive. I'll try to get to one of them though.

Would a sexual dysfunction doctor know more than a regular uro at least though? I was going to call back Monday for that referral I never heard back from. I kind of put if off because for a while it was at least stable, and I'm just afraid of it getting worse during the checkup. Thing is I'm almost certain i've made it worse feeling down there. Do they always need to do a physical examination of the area? I'd just like to get a Penile Ultrasound to see exactly what's going on and maybe rule out similar conditions. I wouldn't be suprised if I have Mondor's disease as well.

 There's 2 Atlanta doctors listed, Chad Ritenour and Steven Morganstern.

I only have around $100 in the bank right now. I'm basically relying on my parents for everything at the moment and it's really not how things should be, but this has put a stopper on everything else. If i can't get this at least manageable I won't have any motivation to do anything. These supplements aren't cheap. I buy what I can and then when I run out of money they help out a little, but they don't have much at the moment either.

I"ve basically just been laying in bed all day. I dread getting in the car even because sitting hurts even. I think that's weight related and because of how it's buried. When I sit down it pushes in even more.

At my worst I was over 450 pounds. I'm now as of last night 307 pounds. I haven't gained anything, but I haven't been losing much more because this has sort of made me lose that motivation. If I can never have sex I may as well lay in bed and just watch cat videos all day and eat chocolate.

At this rate I might have to quit my job.
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peyronny

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Re: Progressing RAPIDLY *very long*
« Reply #3 on: February 27, 2016, 01:00:53 PM »

Oh, and Pentox is 400 mg 3 times daily.
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NeoV

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Re: Progressing RAPIDLY *very long*
« Reply #4 on: February 28, 2016, 03:40:18 AM »

Your post really touched me deeply and struck me, so I was forced to wrote a lot here and I'm sorry but I hope you find it helpful. Forgive the rant.

It sounds like you were misguided by your urologist. "Masturbate more" is wrong. Let your prostate tell you when to masturbate. If you start leaking semen when you urinate, then you can masturbate. After I started seriously taking long breaks, like one week breaks regularly, my symptoms slowly improved. I had pain and I couldn't sit, work, or do anything, and after I stopped masturbating or checking my erections completely, things improved. I am very certain that unhealthy habits and too frequent masturbation (with a number of other issues combined) causes fibrosis and penile shortening as well as all kinds of issues.

As you said you need an ultrasound. I know it's very expensive and I don't know how you can make that happen. Do what you can, and don't blame yourself for the rest.

You have to move, definitely do not eat chocolate unless it's very dark chocolate and take care of your health.
If you weigh 300 pounds, you are "obese," or a body builder on steroids. Being obese is a sickness both psychological and physical that will kill you, just like smoking. Diabetes is very closely related to Peyronie's, and even a guy like me with low body fat has to be very careful not to spike his blood sugar. Having low blood sugar from spiking it too many times damages your blood vessels and therefore your penis.

Your "buried penis" may simply be a result of your body fat percentage. It is a documented issue and some urologists are very familiar with it. It also seems very clear to me that you have inflammation in your penis and hypoxia (lack of oxygen) which causes turtling and leads to fibrosis and Peyronie's.

The above statements may be a bit unscientific, and I realize that, but at a certain point of suffering we have to trust our gut feelings on some of these issues without the exact terminology for the exact process by which our problems arise. This is particularly true for a systemic illness such as Peyronie's where it is not simply A + B = C.


While I am *not a doctor*, I strongly think that your treatment should be periods of abstinence and regular traction, along with regulating your blood sugar and losing weight slowly over time. Lift weights, consume antioxidants from any source you can in healthy moderation ie. Green tea and blueberries are a great way to do this. You do not need a traction device, but rather you can use your hands like I did. This increased my flaccid length and reduced the dents and curve of my penis both flaccid and erect. Do this with extreme care or you will end up further injured. I had very limited income when I was doing traction by hand, and was even homeless a few days after my ex physically hit me and kicked me out of the apartment. As low as I fell at that time, I kept up traction by hand and my curve and dents are nearly gone.

As for abstinence, I just mean give it long periods of rest, and masturbate when your prostate needs you to.

Studies have documented that raised tgf-beta in the penis creates a high level reactive oxygen species in your penis, increasing your need for antioxidants.

Next, your heart is your penis. If you are obese, what do you think your arteries look like? How about your penile arteries? Keeping them at maximum health is essential, and a healthy diet and a bit of exercise can keep them healthy. You are taking CoQ10, that's great! You are taking a lot of good supplements and I think that's a really good start. They say your penis is a "barometer of a man's health," and I wish I knew the source for this phrase, but it's absolutely true. Penile health in general is something that's hard to fix, just as your general health is brutally hard to fix, at least when starting to make life changes. I simply do not think it is even possible to be overweight or obese and have a healthy penis. It's like being overweight or obese and having a healthy heart. Unheard of. While Peyronie's may occur in a vacuum, to those with superb health, this does not mean we can deny the link between overall penile health and fibrosis and Peyronie's. It doesn't matter how many drugs you take, you cannot save your heart from being overweight, or your penis.

I do not mean to attack you here and say you are terribly unhealthy, and I'm sorry if I come across this way, but I'm rather trying to remind you, and even myself, how important every day choices are. One single night of pizza makes me heart literally pump harder than if I don't consume so much saturated fat. One session of having too much sugar and spiking your blood sugar causes damage, and I still occasionally slip up and indulge too. The thing is, this disease makes me mad, furious, and angry at the lack of education we have on penile and sexual health. I have so many regrets, things I wish I knew then that I know now, it's exhausting.

I really understand how you feel. I think we all feel that pain and it's the most F!"#ing brutal, lowest feeling ever. I have also been through hell with this, as a lot of us have. Never give up on yourself, people need you whether you realize it or not, and to be honest, we need you here, because we all need to get through this together.

Feel free to give us updates at any time, even about minor issues you are facing, or even when you make a minor victory.

-Neo
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peyronny

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Re: Progressing RAPIDLY *very long*
« Reply #5 on: February 28, 2016, 02:25:09 PM »

How much Co Q-10 should I take a day considering my weight? I was wondering about some of the others as well, idk if I'm taking too little or too much.

Yeah, I'm definitely taking a break for now. A lot of the times honestly I wasn't even in the mood but I just wanted to know if it even worked anymore. What worries me though is my morning erections are just bizarre now. Like half erections and the peyronies is preventing it from going up entirely. And this tight feeling drives me crazy too. The erections themselves were never uncomfortable until now, and now it's like it gets hard but it doesn't go up completely because a lump is blocking it from expanding completely. This all started literally over night. Before my erections were fine and there were lumps but some of them just didn't bother me. I would feel pain sometimes when I rub over those areas but tried my best not to.

I know the buried penis is from my weight. The uro said it's average length but the weight makes it appear smaller. I disagree about the size though because even erect it's small, even before this nightmare started. I never let that bother me because it's not something I could control.

As of now, I'm sure it would be impossible to penetrate or masturbate unless I literally just rub it flaccid.

Honestly right now, I'd be happy if it just went back to the way it was a week ago, even though I was pretty stressed about it then too at least I knew I could get it up properly.





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peyronny

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Re: Progressing RAPIDLY *very long*
« Reply #6 on: February 29, 2016, 09:45:13 AM »

Called up Dr. Ritenour in Atlanta and he's not taking new patients. :-\

Gonna try Morganstern later on, but don't have my insurance card on me.

 
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fairfaxology

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Re: Progressing RAPIDLY *very long*
« Reply #7 on: February 28, 2017, 02:24:32 PM »

I'm new to this forum and I don't mean to be negative but have to say Peyronny, I am somewhat flabberghasted you did not thank NeoV for that answer. If someone takes the time to help you and write such a long, emotive response to your problem (for absolutely no monetary reward) then please at least say "I appreciate your answer".

I know, for one, that I did as I have just been diagnosed, am also fairly terrified, and answers as detailed and considerate as NeoV's are really helping me deal with it.
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james1947

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Re: Progressing RAPIDLY *very long*
« Reply #8 on: March 01, 2017, 04:53:07 AM »

fairfaxology

You wrote:
Quote
I don't mean to be negative
But this what you are doing by trying to educate other members.
I have very big appreciation for NeoV regarding his knowledge and his posts.
The reason he is posting is to help others and not to get appreciation

James
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LeeBee69

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Re: Progressing RAPIDLY *very long*
« Reply #9 on: March 02, 2017, 03:21:31 PM »

Peyronny,

I'm going to go one step further than NeoV on the diet.

You need to go on a low carb/high fat diet. You undoubtedly have metabolic syndrome - that means you have insulin resistance (and the genes that come with it that give you a higher propensity for Peyronnies) but the beta cells of your Pancreas are not "fragile". That means you may not become T2 Diabetic, but it's not good news. Insulin is very damaging to the heart and you will be pumping out loads of the stuff . It will not only dramatically reduce your weight but improve you cholesterol, blood pressure and hormone status. I bet if you got those tested they would not be good. I know from experience. I would look to get down to 30gms of carbs per day, but don't go straight there. Start with 200gms for a couple of months, then 100gms, then 30gms. I'm happy to give you advice offline if you want to fix your weight problem. Ot look up the Livin La Low Carb Vida podcast.

Will it fix your Peyronnies? No, but it will help I think...I'm pretty sure you'll be able to sit down again and you'll increase your chances of living a lot longer

Cheers,
LeeBee
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QuackAttack

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Re: Progressing RAPIDLY *very long*
« Reply #10 on: March 02, 2017, 09:43:57 PM »

Pey,

I agree with Lee, but I'll top that. I absolutely guarantee if you follow Dr. Joel Wallach's protocol for weight loss, you will get down to your ideal weight and never gain it back. Going further in the low-carb is to avoid Gluten (barley, wheat and rye) as well as Gliadin (Oats). When you see gluten-free oats it is completely hogwash. Gluten is Gliadin and Gliadin is Gluten. Do the research and you will find that there is Gliadin in barley, wheat and rye as well.  The only safe grains are NON-GMO corn, rice, quinoa, sorghum, buckwheat (not wheat at all) and a few others. I think Lee's point on the low carbs is the sugar aspect of carbs.  Pey, plain and simple: You didn't get to your weight because you want to eat just to eat. You have a gluten intolerance and I believe I have told you this before. Eating a more paleo style diet, getting off the gluten and not even letting what you eat come anywhere near gluten due to cross contamination along with a proper vitamin and mineral supplement program will get you where you need to be. I would bet $1,000 if you followed Dr. Wallach's program to the tee, you would be where you need to be. You just need to make the choice and follow through.
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Realvinni2000

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Re: Progressing RAPIDLY *very long*
« Reply #11 on: March 16, 2017, 05:44:34 PM »

Hi
I would add some bilberry estract and propolis , not so much.
Propolis at empty stomach.
Drop weight with diet and moderate excercise , even walking,could help in the long run.

The standard dose of Q-10 for Peyronies Disease is between 100 and 200 gr.
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melting

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Re: Progressing RAPIDLY *very long*
« Reply #12 on: March 18, 2017, 08:22:48 PM »

I feel for you. I can imagine your situation from the explanation vividly.
When I had poor blood sugar control it aggrevated my situation.
Bad high sugar blood hitting sore or inflammed spots in your dick is a bad recipe.

By your explanations you seem to lead a very unhealthy life.
No matter what put you into this position you have to change course present-future. Past is over.
Whatever you can do towards a better future you have to do. Otherwise this sounds like you will only accumulate more problems pilling on.

It could be a first step to get more movement/fresh air. If you live a passive lifestyle your blood is most probably not looking good under a microscope.(the same blood that swims aroudn in your penis)
Some movement in fresh air can change that already a lot even if it might appear dull/small step to you.

I had many problems but changed my mind and also my body and function rather good these days. It's possible. Each step in the right direction even if small helps!

Research what might help your body and try to apply what you can. For your mind find something positive you can focus on.


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