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Author Topic: The real score?  (Read 772 times)

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Inky

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The real score?
« on: June 15, 2019, 01:36:05 PM »

Hello,

New member here. I have read many, many posts and have come to some inexorable conclusions based on mentally cross referencing them all.

I would like to hear what the realists among you have to say. If I am screwed, I want to know it. It seems the only people that have any chance are those that start traction and pentox within a month or maybe a few months of diagnosis.

I was diagnosed approximately one year ago. The curve developed gradually and stayed that way for about 6 months, until about 2 months ago, at which point it considerably worsened. And then about a week ago very severe pain started. I always had pain upon erection, but this is constant now.

I started with a small plaque under the glans. It has gotten much larger and harder.

I did nothing during this entire year on advice from my uro.

In the last 2 weeks I tried taking all the supplements suggested and all of them have horrible side effects for me.

I tried traction. It makes the pain much worse.

Here is the question.

Is it too late? I mean really, is it too late? I know some of you will say to fight, but I want the real answer. I don't want to spend a year of 9 hours a day having a hose attached to my dick if I am going to get a 5 percent reduction or most actually, make it even worse.

Did I start treatment too late?
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Bubba dawg

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Re: The real score?
« Reply #1 on: June 15, 2019, 05:23:01 PM »

Depends on if your plaque has calcified. If it has then you would need surgery. If it hasn't, then you need Xiaflex, or Traction or both. You also need a Peyrones Urologist specialist to help you decide what to do. Someone who has treated a lot of Peyrones cases.  Peyrones has spontaneously disappeared after a year for some. That is  rare
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5 Rounds of Xiaflex. Good results.

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Inky

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Re: The real score?
« Reply #2 on: June 16, 2019, 07:44:45 AM »

I am going to new urologist on Tues. I won't get surgery. That just takes more length off and peyronie's can come back anyway.

Any opinions from anyone else?
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Hawk

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Re: The real score?
« Reply #3 on: June 16, 2019, 07:59:19 AM »

Have you read the "Accounts of Improvement" board?

In large part, it completely depends on how you define any people that "have a chance".  Have a chance at what?  Repeated successful completely satisfying intercourse; a chance at a successful life, a chance or a straight penis, a chance to be exactly like they were ten years before Peyronies Disease, a chance to have a one-night stand notice nothing out of the ordinary about their penis?

The definition of your use of the phrase means everything because without that definition the answers will make zero sense.
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Inky

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Re: The real score?
« Reply #4 on: June 16, 2019, 08:36:14 AM »

A chance at a straight(er) penis. I have read that once any real time, like over 6 months, has gone by, you are screwed.
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TonySa

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Re: The real score?
« Reply #5 on: June 16, 2019, 02:04:51 PM »

No, you are not Peyronies Survival Guide - Information for New Members - Peyronies Society Forums.  Read the survival guide, and start treatment planning w a peyronies specialist:
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Inky

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Re: The real score?
« Reply #6 on: June 16, 2019, 05:28:26 PM »

 do you say I am not? Specifically. I have read many things to the contrary here that say once the plaque is calcified or if you can't take the recommended supplements like pentox, etc. that you will not see a reduction in the curve. All the success stories are about people that combated this in the first 3 months. People that had improvement otherwise only had what I would consider minor improvements. A reduction from 40 degrees to 30 degrees after a year in a harness is not a victory imo.
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Hawk

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Re: The real score?
« Reply #7 on: June 17, 2019, 08:17:13 AM »

For instance, do you consider the difference between the first several photos of this 120-degree curve and the last two photos to be an acceptable outcome?
https://photos.google.com/share/AF1QipPCiwuLEx05gi7oN8A3veJ-TY06NRfzhBshJXLRZMVDUDH7-T4vEl6iD-ohHEufXw?key=cWJ5RDhvYTY4NnRKQ1JTeTNhT0xTWnhIWWN2NWV3
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Inky

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Re: The real score?
« Reply #8 on: June 17, 2019, 09:26:29 AM »

No. It is not acceptable. Especially considering peyronie's will eventually take away those improvements because it is a chronic wasting disease of the immune system.

Also, not what I wanted to know. I want to know if because I started treatment after doing nothing for a year and because I know I have the true form of peyronie's caused by disease and not just an injury and because I can't take the side effects of most of the supplements am I doomed?
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Hawk

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Re: The real score?
« Reply #9 on: June 17, 2019, 11:25:15 AM »

First, you need to educate yourself.  Peyronies Disease will take away NONE of those improvements in those photos.  In fact, the improvement continues because that man's deformity was totally corrected (over a period of time) with the implant installed 5 minutes before the last photos.

We have men on the forum that have had spontaneous correction (although few), many who have been corrected in the sense that Peyronies Disease caused them to curve back to a straight position (I experienced that along with several others).  We have men who have been totally corrected with Nesbit, men corrected with excision and grafting, many men corrected with an implant, men that regained size and shape from traction, VED, and Pentox.  Men that had significant improvement with Xiaflex.  All of these occurred at various stages but many men get no improvement and the longer it goes the likelihood does decrease. 

There is no standard rate at which plaque calcifies so you get no guarantee with non-invasive procedures but it is worth a try, especially if you have no Erectile Dysfunction.  If you insist on certain fast improvement then you have to consider invasive measures with a great surgeon.
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Inky

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Re: The real score?
« Reply #10 on: June 17, 2019, 11:51:09 AM »

I did educate myself. And I'm sorry because I truly am not trying to pick a fight. And I really do thank you and everyone else here for this forum and for your answers and support.

I am just going by what I read here. And that boils down to:

1. This disease progresses for life. It can be arrested, but not forever. It only stays stable for a short period, or long period, but does not stay forever. Even with surgery, it can come back. I had a doctor tell me last week that even with nesbit, peyronie's comes back unpredictably.

2. Surgery takes off more length. And more girth.

In general, I do understand that women don't really care about your penis. And I never really cared what women think in the first place. Serial killers can get girl friends. This was never about that for me. This is about agency and control. The fact that this cosmic wrong was done to me by a malevolent force and there is nothing I can do to escape it. It is like living with a nuclear bomb strapped to me. I know that sounds dramatic, but that is how I feel. I don't feel like a human any longer. I can't leave the house because I don't feel I have permission. I don't feel safe. Or whole. I fantasize about cutting it off with a butter knife. Any this will never stop until the thing causing it stops. And it won't because it is welded to me. I have no clue how to get my mind right. I have been to therapists before and it is just trying to b.s. you into believing you are one of the cool kids with absolutely zero evidence of such.

I understand in those photos, that that is an improvement. But I sort of think of this as life in prison. Getting better food in prison or being granted rights to watch t.v. is great. But, you still can't leave and you need to avoid being raped all the time. So, to view it as an improvement is sort of like slave thinking in my opinion. Being glad that master didn't beat you. And I realize I have a sh!^^y attitude. I just don't know how to have a good one. Positive thoughts are lies as far as I can see. If you can believe them, that's great, but they aren't true and I don't know how to believe them.
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Bubba dawg

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Re: The real score?
« Reply #11 on: June 17, 2019, 04:17:18 PM »

July will be a year after the last treatment for Xiaflex. No relapse so far--- knock on wood lol Really don't know when the plaque started building or when I developed some calcification. I know when the pain, shrinkage and curve started. I didin't think about all that. I just went for treatment and hoped for the best. I was glad there was a treatment besides surgery. Used to be no Xiaflex not too long ago. Now there are much better Surgery techniques. People don't let the possibility of Cancer coming back stop them from getting treatment.
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5 Rounds of Xiaflex. Good results.

I am known to give out false information and post nonsense with little to no evidence to back up my claims.
I have ignored several warnings. Further reports to the moderators or Administrators and I will be banned.

Hawk

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Re: The real score?
« Reply #12 on: June 18, 2019, 10:12:01 AM »


I understand in those photos, that that is an improvement. But I sort of think of this as life in prison. Getting better food in prison or being granted rights to watch t.v. is great. But, you still can't leave and you need to avoid being raped all the time. So, to view it as an improvement is sort of like slave thinking in my opinion. Being glad that master didn't beat you. And I realize I have a sh!^^y attitude. I just don't know how to have a good one. Positive thoughts are lies as far as I can see. If you can believe them, that's great, but they aren't true and I don't know how to believe them.

This paragraph does pretty much sum it up. You are likely correct in thinking things will likely always be terrible and unsatisfactory for you, always that nagging feeling of what isn't quite right or uncertainty that you are not in full control of what might come and destroy even the bit of satisfaction that you do have.  The attitude that positive points of view are a lie is, of course, a lie in itself.  The pernicious thing is that no doctor or supplement can change what you wrote in that paragraph.  I think you know that the responsibility for changing that does not lie with the pharmaceutical companies or medical doctors.  It lies with you.  To suggest that a man who has a penis that curls upon itself at almost 360-degrees and touches its base, and who now has a curvature of 10 degrees well within the normal range, and who can have intercourse until his heart is content, and who will NEVER have a curve or deformity again is "like living life in prison", I find unrealistic to put it politely.   It is like a body dysmorphia of anorexia where a starving person sees only fat and thinks outside advice to the contrary is all lies to fool them.

I see the concept that you are the victim of a "cosmic wrong was done to me by a malevolent force" as strangely egocentric.  To suggest that the universe or any all-powerful controlling force is focused on controlling and toying with the supremely important Inky and his penis seems to reveal a problem more serious than Peyronies Disease.  As much as you might wish otherwise, as much as you might wish it was easier, the responsibility to correct these fantasies and falsehoods lie with you.  It is not easy and the work cannot be put off on others.  We, however, know that you can do it.  We just hope that you will.

Finally, there are over one hundred thousand post s on this forum.  I have read 80% of them.  I have fought Erectile Dysfunction and Peyronies Disease and many other challenges.  You could not be much more ignorant of this disease if you think it is bound to "progresses for life" if you think it "always comes back", if you think surgery never holds for life.  Either you have not read the forum carefully AND you dismiss my understanding of Peyronies Disease OR your chosen attitude allows you to read right past evidence that contradicts what you choose to believe.   None of us control the future.  The forces of the universe could give you a brand new dick then send a freight train to run over the rest of your body leaving a perfect dick on a deformed body.  I, however, refuse to live in fear and depression of what might be and throw away all the great things that are.

I am as happy with my dick as I was at 18 because it functions as well as it did then,  It feels as good to me and my partner as it did then.  It looks as good as it did then.  I cannot feel like a victim when so much is right in the universe and with my dick.
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Inky

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Re: The real score?
« Reply #13 on: June 18, 2019, 12:39:47 PM »

Hi Hawk,

Sorry, not trying to start a fight here. I really just want to understand your logic (and mine). I can't believe 2 things are true at the same time.

If I read across many threads that say once a plaque has calcified, nothing really is effective except surgery. If I then read that surgery causes more length and girth loss, and then a doctor that has been doing this for 30 years tells me that peyronie's can come back at any time, why would I believe you with zero evidence?

NeoV and a number of others say that peyronie's is a chronic lifelong condition. It either is or isn't. If 200 threads say it is, and 5 say it isn't then most likely it is.

I realize no 2 cases are the same.

I just want to know how you come to conclusions. I can pull up the particular thread links and copy them all that say once a plaque is calcified that traction, etc. is useless. I can provide evidence for anything I say. By that I mean I can provide the material by which I came to those conclusions.

Can you provide a case where a person with a large curve that is calcified did traction and the curve reduced to 10 percent or less? If not, then I believe myself, not you.

I read the improvement stories. Almost all of then caught this disease early. Almost all of them got peyronie's from an injury. Almost all of them do not mention whether the plaque was calcified or not. And all of them took supplements.
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TonySa

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Re: The real score?
« Reply #14 on: June 18, 2019, 03:59:30 PM »

A public forum is a great tool.  You will read many viewpoints and individual experiences.  You have to take them as a whole and not rely on any one specific statement.  Yes, you will find other doomsday statements such as you make...but you will read other cases such as where traction was helpful—even for calcified plaque (and studies).  You will have to decide which you trust and focus on. 
Also, you say you’ve tried counseling, has any doc recommend a trial of meds as well?  Maybe it’s worth considering if you can’t move out of a total depression and hopelessness.  Since you’re here, I believe you’re trying to find some hope that this is not a death sentence for you.
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Hawk

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Re: The real score?
« Reply #15 on: June 18, 2019, 11:16:43 PM »

Inky, maybe I’m tired after a long day but I have no interest in trying to convince you that I know what I am talking about.  If you had been here with me for 15 years you would know I am a hard evidence based guy and that does not mean anecdotal evidence.

I fought Peyronies Disease and Erectile Dysfunction for 15 years.  I gained size from surgery over my presurgery size (not over my pre Peyronies Disease size)

You research, you decide, you choose, you live with your choices.

Best of luck!
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Hontas

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Re: The real score?
« Reply #16 on: July 04, 2019, 09:24:19 AM »

You are completely right about disease being able to progress for all your life. Honestly,  none of the people here are an expert(there are probably less than 10 experts in whole world) so you shouldnt talk about how sure you are with this disease. Its not the same for everyone and there are definitely people out there with constant progression and pain. Keep in mind that not everyone can do traction and get an implant to solve their Peyronies as that probably isnt the same type of peyronies you have as others. There are several articles if one wants to actually learn about it.

Also, Inky yes realistically totally impossible to solve, thats why i am gathering as much people as i can to understand why constant active phase occurs and how to solve it
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Hawk

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Re: The real score?
« Reply #17 on: July 06, 2019, 11:19:14 PM »

Just to set the record straight;
Peyronies Disease can progress for years, even off and on your whole life but that is not typical.
There is no "kind" of Peyronies Disease that cannot receive an implant.  All one has to do is ask the leading doctors that pioneered breakthroughs in implant surgery.
Also, Peyronies Disease experts do not recognize different "types" of Peyronies Disease.  Different degrees yes, different phases yes, different risk factors and different triggers yes.  Different diseases NO.
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NeoV

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Re: The real score?
« Reply #18 on: July 07, 2019, 05:13:57 AM »

Traction without tension hurts? I mean stretching to full length only, and no additional tension.
The first time I did traction I was a bit sore actually, but I am NOT telling you to do traction despite pain.
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Inky

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Re: The real score?
« Reply #19 on: July 07, 2019, 07:50:54 AM »

Sometimes it does and sometimes it doesn't. Not sure what you mean by stretching past full length. If you stretch further than you can physically stretch isnt that tearing? How hard should you be pulling?
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NeoV

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Re: The real score?
« Reply #20 on: July 07, 2019, 08:15:08 AM »

I mean once you pull to the max length, are you actually pulling? I recommend not even applying any tension once it's fully stretched. Simply let your penis breath and open it up to it's maximum stretched length.
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Inky

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Re: The real score?
« Reply #21 on: July 07, 2019, 10:13:44 AM »

No. Once it is stretched "comfortably" I go no further. Like you say, my thinking here is that I just want to induce blood flow and a slight stretch and not try to pull it like taffy. I warm it up first with a rice sock. Some days it pulls further than others. It always varies day by day. My dick is different every single day as to how I have to calibrate the penimaster rod length.
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Hontas

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Re: The real score?
« Reply #22 on: July 07, 2019, 01:48:22 PM »

I meant that pathophysiology of it is totally different, when i said "different types of disease". The experience of some people in here are not even close. For example i always gain and lose and its a cycle but someone here could have one significant injury that could be the only one. This suggests almost completely different reasons as to why disease occurs.
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TonySa

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Re: The real score?
« Reply #23 on: July 07, 2019, 06:32:28 PM »

When one becomes convinced:  all cases are different, my case is always at it’s worse, no treatment will ever help, even an implant would not help me, etc... it would be helpful to consider depression is causing one to see everything through a completely hopeless viewpoint.  Treatment for depression could be very helpful and allows one w time to take a constructive treatment approach where there are options and there will be improvement.
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Hontas

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Re: The real score?
« Reply #24 on: July 10, 2019, 11:18:14 PM »

TonySa

I actually found some decent treatment process but it takes a long time to heal and i am not even sure if it works for real. So i am not saying its hopeless, its just really frustrating to find out which treatment works for you.
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TonySa

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Re: The real score?
« Reply #25 on: July 12, 2019, 07:05:43 PM »

Certainly it can be frustrating, it’s great you haven’t given up!
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Hontas

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Re: The real score?
« Reply #26 on: July 15, 2019, 08:09:12 PM »

I am trying new acute phase version of colchicine i will let you know if it works
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Christopher1

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Re: The real score?
« Reply #27 on: July 15, 2019, 11:43:22 PM »

Start NeoV's stretching routine slowly. I like doing it in a hot shower before bed.

I always do it before bed - never in the morning.
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