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Author Topic: almost 6 months with Peyronies Disease  (Read 5477 times)

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chefcasey

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almost 6 months with Peyronies Disease
« on: January 22, 2011, 08:29:57 PM »

Well it's almost been 6 months since I noticed that something was wrong with my penis, and what a hellish experience it's been.

I think I finally understand why most doctors and urologists use the "wait and see" method for the first 6 months.  I honestly don't think anything I've done has produced anything positive.  I just started pentox and ved a few weeks ago, but I've been on ALC, ubiquinol, vit.e, fish oil, vitamin d3, and L-arginine almost since the beginning, getting good nightime erections and morning wood, and no stopping of progression whatsoever. Pain comes and goes, and when it goes I get all excited only to be kicked to the ground when it returns again, for no apparent reason.  I start to feel good whenever I think the deformity is stabilizing, and then damn, a new dent, or more twist, less girth shows up.  I swear this disease could drive anyone insane. 

I think I get sidetracked sometimes when I think of it as a disease, because it's a scar, and it's no more of a disease than the scars I get on my hands, feet or face.  So sometimes when I look for cures or treatments, I feel stupid. The bottom line is that it's scar tissue.  It's hard, it's inflamed, it's inelastic, and it ain't going away.  I just don't know why it stays inflamed for so long, when none of the other scars on my body do.  I can't believe I'm saying this, but if this stopped progressing and the pain stopped, I would consider myself cured.

This thing reduces me to tears all the time and I haven't cried in years, it's ridiculous.  I find myself researching most of the time on this forum and while it helps me to know I'm not alone, I haven't been out with my friends in months.  I can't even approach a female just because I know I'm not ready physically or mentally for anything.  It's funny too, because I have been hit on by some gorgeous girls in the past couple months, and it hurts me bad.  I have one semester of grad school left, so I'm trying to focus on that to get my mind off of it, but sometimes I just shut down. 

Maybe it gets worse before it gets better, but either way I'm just starting to lose faith in any treatment.  I've spent all my time learning ways to treat this thing, but maybe I should just learn to live with it, and learn to accept that it's going to keep progressing for a while. I guess the thing that bothers me the most is just thinking about the guy I used to be before all of this.  I was strong, independent, driven, and I just generally enjoyed life, and didn't let anything bother me.  That has all changed because of this and I feel like a completely different person.

 I'm sorry if this has turned into a rant guys, but I'm home alone on a saturday night, depressed and discouraged.  Hopefully my 12 month update will be a little brighter.
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George999

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Re: almost 6 months with Peyronies Disease
« Reply #1 on: January 22, 2011, 11:12:29 PM »

You can't go by where your symptoms seem to be taking you.  You have to go by the research information.  Pentoxifylline, Ubiquinol and ALC work.  We know that from the research.  Whether or not they work *strongly* enough to drive your case into a remission is open to question.  Each individual is different.  But they *do* work and it is very likely that without them, your situation would be worse.  Secondly, Peyronie's like a number of other diseases, is driven by out of control inflammation.  And number of general health issues either reduce inflammation or increase it.  They are the kinds of things that can make your body resistant to Peyronie's or susceptible to it.  This is where things like optimal blood levels of vitamin D come in.  It is also about optimal waist circumference.  About optimal blood sugar and serum insulin levels.  About dietary consumption of anti-inflammatory vs inflammatory foods.  There is a considerable learning curve involved in getting a handle on this disease.  Another issue, for example, is hypertension.  Hypertension sets up a situation where white blood cells easily slip into surrounding tissue, thus stimulating auto-immune type processes.  Daily aerobic exercise, on the other hand, results in anti-inflammatory processes being kindled.  And past exposure to heavy metal toxins can raise inflammation.  There are just so many things one can do to gain just one more edge against this disease.  But to effectively put it all together takes patience and determination.  The harder you work at it, the more likely you are to be successful.  - George
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chefcasey

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Re: almost 6 months with Peyronies Disease
« Reply #2 on: January 23, 2011, 11:17:17 AM »

Thanks George.  I agree that it probably is a whole body inflammation problem.  Since the onset I have been doing everything else that I can to be healthier.  I quit smoking, I exercise 4 times a week, I eat a ton of anti-oxidants, cut out all refined sugars, fast foods, and almost all flour from my diet.  I had vitamin D levels checked less than a year ago for my depression and it was normal, although I still take 1000iu everyday. I don't have hypertension, and otherwise I'm perfectly healthy 27 year old.   Oddly enough, all the inflammation from nagging sports injuries(I have tendonitis in my shoulders and knees, plus arthritis in my back) have completely disappeared.  When I first got diagnosed with Peyronies Disease, pain ws actually the last thing I noticed, after about 2 months in, which strikes me as odd because it's usually the first thing that men notice.

I've experimented with both the ved and traction, but honestly, it still hurts too much for a real regiment of either.  I just feel like I've done everything that I can do or should be done at this point.  I gives me hope when I feel like I'm "doing something", but I think it will just go through the same cycle as every other scar on my body.  When I get a scar on my hand, usually it starts to scab up and fluff off within a month, then the scar tissue is apparent being reddish and still somewhat inflamed.  After a while, perhaps months, it becomes lighter, non-inflammed, and takes on characteristics of normal tissue.  I think this is the way tissues in my penis are healing too, just slower, at least I hope so.
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George999

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Re: almost 6 months with Peyronies Disease
« Reply #3 on: January 23, 2011, 11:50:28 AM »

For sure you are doing all the right things here, just keep it up and don't give up.  You say your Vitamin D levels are "normal".  I really don't know what "normal" is.  I know that optimal is 50 to 70ng/ml.  I have heard of doctors telling patients that 20ng/ml is "normal".  Its sort of like Peyronie's and Testosterone.  "Normal" is the word doctors use to let you know they think you are just fine the way you are.  I wouldn't put a lot of stock in it.  I would want to know what the numbers are and bash those against authoritative info, not just the lame assessment on the lab report.  Ditto with blood sugar.  My fasting level is currently 101 which two doctors told me was "normal".  The reality is that latest research is showing that fasting levels over 85 are a problem.  101 is actually cutting into the acknowledged prediabetic area but it has to get significantly higher than that for many doctors to get alarmed.  And they don't even typically measure insulin levels.  I just got mine tested because I demanded it tested and it had better be at a healthy level or I am going to demand action.  That is the ONLY way you will get help from most doctors unfortunately, because otherwise they will just blame all of your problems on "genetics" and/or advancing age and pat you on the back and send you out with a bag of pills.  - George
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Worried Guy

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Re: almost 6 months with Peyronies Disease
« Reply #4 on: February 02, 2011, 02:17:39 PM »

Chef Casey your story sounds like mine.  This is my first post and I'm so worried.

"I think I finally understand why most doctors and urologists use the "wait and see" method for the first 6 months.  I honestly don't think anything I've done has produced anything positive.  I just started pentox and ved a few weeks ago, but I've been on ALC, ubiquinol, vit.e, fish oil, vitamin d3, and L-arginine almost since the beginning, getting good nightime erections and morning wood, and no stopping of progression whatsoever. Pain comes and goes, and when it goes I get all excited only to be kicked to the ground when it returns again, for no apparent reason.  I start to feel good whenever I think the deformity is stabilizing, and then damn, a new dent, or more twist, less girth shows up.  I swear this disease could drive anyone insane"

I have had the condition for 2 months.  The pain is bad when flaccid and not when erect.  Like you I've started on Vit E, ALC, coenzyme q10, L-arginine.  I visited my GP who referred me to a uro.  That was a week a go now and I think the degree of curvature has increased since then.  He said I had a 10 degree to the left but I'm guessing it must be more like 15.  The guy told me that the stuff I was taking was pointless and that only Vit E would help with the pain and not the bend. He also told me once the pain had stopped the bend would stop!?  I don't believe this to be true.  He also said that the plaque will never decrease in size!  I also believe this not to be true. I asked if he would place me on Pentox and he said no.  He said there were 150 drugs he could put me on but none of them worked.  I decided to look on the net to find the best Uro I could and have now booked an appointment with him.  The pain is so bad at the moment all the time and a constant reminder that there is a problem.  I am so stressed I'm now having problems getting an erection even though I know most of it is in my head.  I booked the time off work today for my next uro appointment and the secretary was asking why I was taking holiday.  She kept asking and asking and in the end I burst out in tears.  I'm only 27 and really can't handle this.  I can't even recall a specific trauma as to why this is happening to me.  Any advice on what I can do before I see the uro?  It is over a month from now and it will go so slow.  I'm considering buying Pentox but really don't trust these on line chemists.
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Worried Guy

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Re: almost 6 months with Peyronies Disease
« Reply #5 on: February 02, 2011, 02:31:32 PM »

Chef Casey, do you mind telling me who put you on Pentox and where did you buy your VED device?  I'm in the UK.
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chefcasey

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Re: almost 6 months with Peyronies Disease
« Reply #6 on: February 02, 2011, 06:14:33 PM »

worried guy:

Some days are good and some days are bad with this disease, and that was a pretty bad day for me.  I have taken ALC for close to 5 months and have about a 2 week supply left.  After that I'll probably discontinue it, because it's expensive and I haven't noticed any benefit from it.  Studies show it to be beneficial vs. tamoxifen, but the sample size was kind of small so it's not the best study, but vs. placebo it was shown to be useless anyway.  The jury is still out on the other ones, because I haven't taken them for too long, although I will give pentox a try as long as I keep getting prescriptions for it.  Vitamin E I also discontinued, because it hasn't been shown to reduce deformity or pain to my knowledge, nor has it done anything in my own case.  In fact some specialists warn against taking it as it might promote scarring.  Your doctor is right that there is no definitive oral treatment shown to reduce symptoms across the board in men. I'm not familiar with the doctors in the UK, but there are some suggestions under the "doctors and uros" section of the forum.  I received my prescription from Dr. Levine in Chicago.  He is one of the top experts in this field and he told me face to face that "honestly I don't have too much faith in pentox, but it makes more sense than anything else and it has low toxicity and low side effects."  I agree with him, in that oral treatment is very limited, and the best one can hope for from it is pain reduction and elimination or slowage of disease progression.  He also recommends L-arginine since it has been shown to stop scarring in animal models, although not humans.  L-arginine is without a doubt the only thing that I can say for sure had any impact on me yet, and that was solely in terms of nightime erections.  

I think your doctor is wrong about the pain and stabilization connection.  Pain was actually the last thing I noticed, after my deformity.  Pain from Peyronies Disease can be caused by all sorts of reasons.  I never had pain until the scar tissue started to shrink up more and as I believe, put pressure on nerves which is causing me pain.  If pain is gone, I definitely think that this is a good sign.  Honestly, hot baths help more with pain than any drug or supplement I've taken so far.  

I think the erection problem might very well be in your head.  While your waiting to see a uro, I would recommend taking L-arginine 1g 2x a day, the most important one being right before bedtime.  I know it's hard to get an erection when all you can dwell on is your "new" deformed penis, but just remind yourself that erections are by far the best medicine for Peyronies Disease, you may or may not recover from Peyronies Disease, but you will definitely not recover without erections or something to stretch the tissue out on a regular basis.  Also, just think: what good is taking all these pills if they never find their way to your penis?  Erections are the best way to make sure that nutrients are getting to the damaged tissue via increased bloodflow.

I partially agree with your doc that "plaque" will never decrease in size.  I hate using the word plaque because it's really not plaque, like the kind on your teeth or the kind that gets lodged in your arteries.  It's scar tissue, plain and simple, like the scar you get from a cut or a scrape on your skin.  Calcified plaque has been proven to shrink over time, but scar tissue itself never really goes away.  The argument could be made that an experimental drug like xiaflex can dissolve scar tissue, although there is no way of knowing what, if any tissue replaces it, but it's still an open question.  What matters is how soft and flexible it is.  I had some really nasty,deep, thick scars from when I did construction and after years, they are completely unnoticeable.  They are still there, but they act like normal tissue again.  I see no reason why this can't happen with our penises.  The only way to soften and remold/stretch the tissue is with a combination of oral drugs, possible injected drugs, and mechanical stretchers, along with erections of course.

I'm also 27 years old, so I know how hard this can be.  I always thought of myself as a tough person, but this thing has reduced me to tears more times than I can count.  It does get better though, and there are a lot of guys on here our age, even quite a few that have had improvement and even dramatic improvement.  Hang in there, do your research and don't give up.  Feel free to private message me anytime if you need advice.

-chefcasey
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cowboyfood

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Re: almost 6 months with Peyronies Disease
« Reply #7 on: February 03, 2011, 12:32:22 PM »

Hey, maybe this will encourage you...I first discovered a small dent on the top 1/3 right side, and an upward bend towards of about 25-30 degrees of the last 1/3 of my penis.  This was in December 08, January 09.

I started VED, pentox, viagra, L-argnine by April....by May/June 09, the upward bend seemed to have disappeared.  However, I noticed a left side dent forming in addition to my right side dent (basically, this "new" dent seemed like a continuation of the "earlier" dent).

Over the next year the right side dent got a little bigger, as did the left.  But at some point in the winter 09/ Spring 10, everything seemed to have been stable for many months.  

Fast Forward to about June 10, and the right side dent was gone (now, I can't feel any type of dent).  So, I basically stopped the VED, not immediately, but by August I realized I was really not using it.  Unfortunately, in August I noticed that the left side dent had increased.  So, I got back on the VED and by the end of September, I was doing my daily VED routines again.  The left side dent progression looks like is has halted since last October.  Now it looks like it has subsided slightly.

So, bottom line, a little over 2 years since I discovered this condition, I've seen the appearance and "resolution" of the upward bend and right side dent deformities.  I'm continuing to use the VED, pentox, L-arginine, and now Ubiqunol on a daily basis to hold that left-side dent at bay, and hopefully see a resolution in it as I have seen in the right side dent. (so far, it looks like progression of the left-side has halted, and I swear it looks like its reversed some since Sept/Oct).

FWIW, for the first 1 1/2 years, it seemed like my first right-side dent has stablized after about 6 months, but for the next year it just stubbornly stayed the same.  But from by the early part of the summer of 10, it disappeared fairly rapidly.

So, the resolution of my right side dent and the upward bend gives me plenty of hope.  The left side dent is really not that bad, but just a nagging reminder of what I went through.  Believe me, if this is as bad as it gets for me, I'm thrilled.

These dates are approximations...but, my point is that it took time and daily efforts...I had some bad days, but keep up the faith and hope!

CF
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chefcasey

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Re: almost 6 months with Peyronies Disease
« Reply #8 on: February 03, 2011, 01:02:55 PM »

Cowboyfood-

That is encouraging.  Did you have any loss of length or girth along with it?  I hear a lot of men talk about having resolution, only to later hear that the curve or deformity that went away only did so because the penis shortened on the other side or the whole thing shrank. 

I too had some indentations that have gone away, or are less noticeable, but that's only because I'm losing girth in my penis all over the place.  I used to feel the narrowed part of my penis, which was basically anything below the circumcision scar, everything above felt normal, so I could clearly feel the area change when I ran my fingers up my shaft.  Now I can't feel any difference in circumference because the area above the circumcision scar is shrinking now too for some reason, even though there's no plaque there.

It feels like my whole penis is enveloped in scar tissue, even though when I saw my ultrasound, there were clearly large areas where there is no scarring.  Dr. Levine said my scarring was "minimal", which I'm not quite sure what that means.  Maybe it's minimal in terms of how deep it penetrates the tunica, but there sure is a lot of it, and it's narrowed practically my entire penis.

 I guess the most frustrating part of this disease is the lack of answers.  It's hard to know what will work and what won't work, if anything.  I guess it's a crap shoot and one has to throw everything at it at once and hope something sticks.
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Worried Guy

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Re: almost 6 months with Peyronies Disease
« Reply #9 on: February 03, 2011, 02:05:53 PM »

Chefcasey thanks for the advice.  I got a letter from my original uro today saying that I have a 1cm lump just proximal to the corona in the left corpora.  There is some hardness in the right corpora but this is indistinct at present.  He says my picture shows a 10 degree curve to the left.  If things stayed as they are I could get on with life!  Obviously if the pain stopped that is.  My main concern is that things will get worse with time.  A 1cm lump sounds big to me?  What do other people think?  I had an erection last night and manage to ejaculate so I know that part is in my head.  I hope to try VED as soon as the pain goes down as a preventative and to try and get rid of my small curve.  I can see my penis is now thinner where the problem is and I'm worried that if it gets any thinner it could cause a hinge effect.  I also believe the head of my penis is more swollen when erect. I'm not sure why this would be.  Perhaps the blood is trapped in it.  I'm new to all this stuff really.  Thanks again.
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cowboyfood

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Re: almost 6 months with Peyronies Disease
« Reply #10 on: February 03, 2011, 05:26:23 PM »

chefcasey...

I don't believe I've lost any length or girth.  I kept measurements the whole time, and everything is about the same with those two measurements.  

If I were you, I'd lean on Dr. Levine's observations.  I would figure "minimal" is less than your "whole penis."  

I think you said you're using the VED, right?

My point, and others have made the same, is that it takes time for this to work.  You're probably fighting an uphill battle right now in the relatively early stages...but, many of us believe that the VED and other things you're doing are "mitigating" the situation...which means that even though you do not see improvement or it gets more deformed, it could be worse without doing the VED and other things. (ask others for any scientific argument for these mitigating affects!).  I guess an analogy is like you're putting out a fire...maybe it doesn't seem like things are back to normal at first, some of the fire will continue to burn while you throw water at it, but get the fire out and then repair the damage...don't just let the whole thing burn down (waiting while doing nothing).

But, there are many on the forum who can attest to the improvements seen, over time, with consistent VED usage.  Like its been noted before, this is not a "cure," but it is very possible that the VED will provide some if not a total remedy for the deformity.  

CF
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