PEYRONIE’S Progression & timing

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dioporcolorisolvo

Quote from: james1947 on August 15, 2012, 06:44:02 PM
I will second lwillisjr on every word.
In the acute stage you have the best chances to stop and even revers the disease.
Unfortunately I have not done nothing to treat my Peyronies in the first 30 months and this is the time when I get to where I am.
From reading the forum I understand that also other forum members that treated they Peyronies late are in worst situation than people that treated this disease early.
I am sure that if I had treated it early my situation was much much better today!!!

James

You can't be sure of this.
I started treatments very early. I tried all treatments and after 2 years disease goes on.
No improvments, no stop of progression.

swolf

Quote from: dioporcolorisolvo on August 15, 2012, 02:42:13 PM
In acute phase there are not drugs that can improve or stop the progression if there is a serious case of peyronie.

I think you're looking at it too subjectively, which is understandable if you have an aggressive case that doesn't seem to respond to treatment, but that is a pretty discouraging statement for others to hear and I think most around here would disagree with it. Your best option is to always treat it as early, yet as carefully, as you can. I can say without a doubt I would be worse off if I had not done anything for myself this past year or so. I would encourage you to not give up. Hope is not blind optimism, it is the recognition that there are always unforeseen paths ahead that you will only get to by continuing to push forward. I too can easily fall into wistfully negative thinking but it doesn't really help the situation, so I try to just do the best I can at any given time. Doing nothing at all is probably the worst thing you can do.

james1947

As we all know, Peyronies is different from person to person.
We have many testimonies of stopping the progression and even revers the symptoms when treated early and even treated late have results, like in my case. The results are not miracles, but to get back 1/2" from 2&1/2" lost is a big achievement, again because I have treated it very late.
Dioporcolorisolvo, what is your treatment and can you give a time schedule of your Peyronies and the treatment?

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

dioporcolorisolvo

Can i know which members of this forum have had improvments in the early stage of disease?
I don't remember anyone.

I tried: VitE, ubiquinol, colchicine, pentox, acetil carnitine, proprionil carnitine, traction device, vacuum device, verapamil infiltrations, cortisone infiltrations.
I think that are many.




George999

I certainly got improvements when my disease was in the active state.  My disease was causing pretty intense pain when I started with Acetyl L Carnitine.  The ALC reduced the pain very noticeably and slowed the progression as well.  Then when I was no longer able to take ALC, the pain and progression came back worse than ever and I was begging for Pentox.  Pentox stopped the whole thing cold except when I had injuries from sexual activity.  Adding Ubiquinol to the mix put an end to that.

Additionally the whole thing about a 3-5 month or whatever "active" state is ridiculous.  My "active" state lasted for years as has been the case with a number of guys on this forum.  If one waits for the "active" state to end, they may not have much of a penis left to treat by the time it is over.

- George

swolf

Quote from: dioporcolorisolvo on August 17, 2012, 07:13:06 PM
I tried: VitE, ubiquinol, colchicine, pentox, acetil carnitine, proprionil carnitine, traction device, vacuum device, verapamil infiltrations, cortisone infiltrations.
I think that are many.

This article says acupuncture is well established in Italy with more practitioners per capita than most countries outside of Asia: http://www.itmonline.org/arts/italy.htm

Here is a list of acupuncturists in Italy: http://www.agopuntura-fisa.it/mediciAgopuntori.page
Here is another: http://www.sia-mtc.it/agopuntore.asp
Find one near you and see what they have to say. If you can, see one that knows about herbs.

If you haven't tried it you can't say you've tried everything.


dioporcolorisolvo

Quote from: George999 on August 17, 2012, 09:05:22 PM
I certainly got improvements when my disease was in the active state.  My disease was causing pretty intense pain when I started with Acetyl L Carnitine.  The ALC reduced the pain very noticeably and slowed the progression as well.  Then when I was no longer able to take ALC, the pain and progression came back worse than ever and I was begging for Pentox.  Pentox stopped the whole thing cold except when I had injuries from sexual activity.  Adding Ubiquinol to the mix put an end to that.

Additionally the whole thing about a 3-5 month or whatever "active" state is ridiculous.  My "active" state lasted for years as has been the case with a number of guys on this forum.  If one waits for the "active" state to end, they may not have much of a penis left to treat by the time it is over.

- George

George, your improvments happen after various years, not in the EARLY stage.
Acute phase is different from EARLY phase. Peyronie can be active for many years but for early stage i mean the first period of disease, and in the first period (some months o 1-2 years) i don't remember cases of improvments.

swolf

Quote from: swolf on August 18, 2012, 12:17:16 AM
This article says acupuncture is well established in Italy with more practitioners per capita than most countries outside of Asia: http://www.itmonline.org/arts/italy.htm

I just found that site via a quick search but now that I've gone back and poked around a little more there is some interesting stuff. Here's an article called "REDUCING INFLAMMATION WITH DIET AND SUPPLEMENTS: The Story of Eicosanoid Inhibition" that looks interesting: http://www.itmonline.org/arts/lox.htm But most of the terminology is flying way over my head. If someone is better at deciphering scientific terminology that might be a good read, though the conclusions seem to be things that are fairly well-known, like omega-3 fatty acids = good.

George999

The problem of finding examples of guys successfully treated for early Peyronie's is that 1) NO physician will prescribe any of the effective treatments in the earliest stage of the disease, and 2) most guys are already four or five months into the disease before they discover the treatments that actually work, which very few doctors even are aware of.  So you can NOT say that early treatment doesn't work simply because you haven't seen appropriate examples.  I believe the wise thing is to treat as early as possible.  There is no way doing so could be harmful and it most likely would be helpful.  And until I see valid research demonstrating that it is NOT beneficial, I will maintain that view.  The fact that it doesn't work for one or more people is NOT proof that it is ineffective for everybody.  It is really annoying that guys who are unable to effectively treat themselves then come on this forum and tell everybody else not to waste their money because treatment is ineffective.  The fact is that no amount of treatment works for some people at ANY point in the progress of this disease.  That is a very unhappy fact, but it is true.  In some cases the fury of the inflammation involved simply overwhelms any possible treatment efforts.  But in most cases Peyronie's DOES respond to treatment, and I only wish I had the whole thing to do over again, because if I did, I would throw everything at it immediately when the first symptoms occurred.  - George

finarod

Quote from: dioporcolorisolvo on August 17, 2012, 07:13:06 PM
Can i know which members of this forum have had improvments in the early stage of disease?
I don't remember anyone.

In his article, Saferinejad estimates that nine percent of men have Peyronies Disease. Severity is the important thing. I think people who are generally in worsening in acute phase tend to become member of this forum. Many others do not even bother googling after seeing their plaques becoming smaller or resolving completely, possibly due to early treatment. Forum membership and early stage improvment correlation is thus not a criteria.

james1947

I will second George on every sentence.
Very rarely one is treating Peyronies when the symptoms stats. This is the main problem.
In other diseases the doctors are treating us as soon as possible because have well established treatments.
Saying that treating Peyronies is waisting time is not true. The key to any treatment is consistency over a long period of time.
I will second finarod post also. I see also on the forum people that after curing they Peyronies some people just disappear.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

LWillisjr

Quote from: George999 on August 18, 2012, 01:27:36 PM
The problem of finding examples of guys successfully treated for early Peyronie's is that 1) NO physician will prescribe any of the effective treatments in the earliest stage of the disease,.  - George

George,
The better doctors won't perform surgery until you are stable. But I do know Levine is very proactive and will do VI's, traction, VED's, etc as soon as you walk into his office. So I don't follow your comment that NO doctors prescribe any of the effective treatments in the early stages.

Les
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

George999

Les,  First off, I was referring to the oral treatments that have been discussed here on this thread, not the physical or surgical interventions you are referring to.  I was assuming that readers would be following the complex context of the thread.  Second, I suspect that very few, if any, patients see proactive doctors like Dr Levine or Dr Lue within the first few months after their symptoms begin, since docs like Levine usually require referrals which take time.  Thirdly, as James points out, I really doubt if a patient went immediately to a doctor like Dr Levine and was prescribed Pentoxifylline and saw major improvement as a result, that they would ever find their way here.  Guys who come here are typically desperate for help after seeing general urologist who has simply blown them off with "maybe it will go away on its on" and if not "nothing can be done" (other than surgery of course).  -George

james1947

One of the main reason that makes me to be active on the forum is the answer I have get from the first uro I have asked regarding Peyronies:
QuoteThe only think I can do is to make you excision of the plaques
He even didn't mention grafting.
When I asked him regarding oral treatments and injection, his answer was:
QuoteHave no known oral treatments for Peyronies, injections are ineffective and very painfull. I can prescribe you vitamin E, but is not effective also
Most of our members have get those kind of answers from they uro's, so even if they talk to they uro early, have no chance to get treatment.
I have to mention that he is a good uro, he treated my enlarged prostate very successfully.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

George999

Most urologists are VERY good at dealing with plumbing issues.  Its what they are trained for.  All they are taught about Peyronie's is 1) its untreatable except by surgery, and 2) its not life threatening so it really doesn't matter that much anyway.  - George

skunkworks

Quote from: dioporcolorisolvo on August 15, 2012, 02:42:13 PM
Quote from: swolf on August 15, 2012, 08:06:12 AM
Quote from: dioporcolorisolvo on August 14, 2012, 10:44:48 PM
As i said, there are no treatments for this disease for the first 4-5 years.

What exactly do you mean by this?

In acute phase there are not drugs that can improve or stop the progression if there is a serious case of peyronie.
People that have known improvment in this forum have known those after many years.

I have had this since early in my 28th year, and have treated it very successfully. In the first year I might add.  
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

james1947

skunkworks

Thank you for reinforcing my opinion :)
I think is crucial to treat this disease as soon as it appears!!!
I was stupid not doing nothing even I was 61 :( and now any treatment works dad slowly :(. But still works :)
Can you give some concentrated details on your treatment? It may help others.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

Pentox, arginine, cialis, coq10, ALC and vitamin E. Traction as often as possible at 1200-1500gm of force (I wish I had logged my hours so I knew my total).

I follow a very strict Paleo diet which is mostly fatty meat, some veg and a little fruit. No dairy, grains, tubers, legumes etc. My diet was absolute crap when I suffered my injury.

I lift heavy weights, do sprints and take walks (not jogs) with my dogs.

I used low dose naltrexone for about 6 months, and also pycnogenol briefly. I also used the VED for a few months but am too wide even for the largest cylinder in the 3 cylinder VED.

Edit. Totally forgot about ALC, thanks James1947.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

Yup, I wish I knew what I know now at the time this disease first started.  I would be in even better shape than I am now.  There is no substitute for catching it early and treating it immediately with the best treatments avatilable.  - George

dioporcolorisolvo

Quote from: George999 on October 23, 2012, 10:44:02 PM
Yup, I wish I knew what I know now at the time this disease first started.  I would be in even better shape than I am now.  There is no substitute for catching it early and treating it immediately with the best treatments avatilable.  - George

Sorry, but i thought that you was recovered...

George999

Quote from: dioporcolorisolvo on October 24, 2012, 04:53:51 PM

Sorry, but i thought that you was recovered...

Everything is relative.  I consider myself in very good shape, but things would be even better and I would have gone through far less pain if I had known what to do from the outset.  - George

Mentos

What are the things you recommend from the outset?

Thanks!


lenzi

Quote from: zhukov on June 19, 2010, 12:43:54 PM
I am a 30 year old male and about 4 to 5 years ago I noticed I had a hard flat spot under top flesh of  my penis (about 1 cm long and .5 cm wide) so I went to the urologist and he told me it was just a lesion, probably from a trauma during rough sex, but he told me not to worry and to just take Vitamin E for about 3 months which I did. However, just last week I went for a regular check up with a different urologist and he diagnosed me with Peyronie's Disease

<Animated GIFs not allowed per forum rules as they are deemed not necessary. Sticking to emoticons is fine>

Figures that a trained licensed urologist couldn't even correctly diagnose peyronies disease when the symptoms are completely obvious.

The incompetence in the medical field is beyond scary.

Norm

Not all doctors know everything about every ailment. That is why they specialize. I don't think we can call them incompetent because of that. It is simply not in their realm of knowledge. I would, however, expect them to recognize what they don't know and to refer you to one who does.  
Plication Surgery Dec. 2013. Straight Again!

james1947

Unfortunately Norm, I agree with lenzi regarding:
QuoteThe incompetence in the medical field is beyond scary.
From my own experience, many cases, not just with Peyronies!!!

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

james1947

Mentos

I know you asked George but in mean time I would recommend Pentox, low dose Cialis, CoQ10/Ubiquinol and VED.

James  
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

Mentos


powderpowder

Quick question guys, if you guys had peyronies from an injury, how long did it take to develop symptoms and when did they come? for example month 2 after injury curvature + pain, month 5 pain stopped, etc....

And as far as the acute stage goes, how long did yours last for?

My injury happened mid october. I had hourglass symptoms on right side immediately right after and since then no pain or curvature.  1 month being diagnosed officialy so far.  

Norm

I had extreme curvature with the very next erection after injury, a matter of days. The acute stage lasted almost a year for me. The pain lasted maybe three months. Then it was increased curve until it stopped at eighty degrees. Things settled there and stayed.
Norm
Plication Surgery Dec. 2013. Straight Again!

powderpowder

Thanks for the reply....kinda anxious about the future as anybody in the acute stage would be. Just try to get a scope of what others went thru

BoatFool

Not sure how or when my injury occurred so don't know how much time it took for the acute stage to start.  One Saturday night all is good and the next Saturday it was banana shaped and hurt.

Acute stage only lasted 3 or 4 months.  I was receiving Verapamil injections during that time so maybe it shortened the time?

Hope that helps.

james1947

My Peyronies developed slowly slowly after the injury.
Acute stage 24 months, halted for 6 months and then again acute stage for 6 months.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

bigfish

Much like James my peyronies is progressing slowly, 13 months since the injury and am still having pain, which I assume means I am still in the acute phase. I have an hour-glass effect and a curve to the left. I am taking a break from my meds (pentox, alginine and colchicine) due to side effects. Also am taking a break from the VED as it seems to add to the pain. Discouraged.
BF

powderpowder

if you dont mind me asking are you able to have sex with the pain?

james1947

bigfish

Are you following the Priapus/PRP shots topics?
It may be interesting to know if it helped with pain also.

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

bigfish

I am able to have sex at times, fortunately the level of painwith erection varies. James I have been following the Priapus thread.
Regards
BF

chandnitare

Hi,

I have 2 plaques, 3 years and 1 1/2 yrs old. In flaccid or erection no pain now, but after sex or sometimes after VED the old calcified plaque area becomes bit painful for 1 or few hours. I think pain is due to reaction of some stimulation. Sometimes its like numb feeling. But no pain at all with the un-calcified plaque. Is it disease progression or due to plaque is calcified?

Best regards,

Chand

NeoV

I had dents and post ejaculatory bending since I was 18. Still no answer as to why it's post ejaculation and not post sex.

Bend and hourglass came quickly after a minor injury and progressed over the course of two years. Finally it halted and now seems to be reversing rather quickly. I don't think it would have been possible if I hadn't put so much effort into stretching, and the VED helped miraculously.