Progression of Peyronie's Disease

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Thisisnotcool

Hi to all,

New to the forum as of today. I'm 33 and have had the condition for almost 10 years now. The condition had stabilized it seems. But my plaque increased by 33% in the last 4-5 days (no trauma : I just don't get it...). So now, I'm in pain 24 hours a day. I take vit E, vit C, Ibuprofen (3 times a day), drink cranberrie juice, eat peanuts and all and all. I'm devastated of course because I cannot remember how things went 10 years ago. I can get a solid erection and did so 2 days ago. It helped : no real pain for almost two hours afterwards. But the pain came back and now I'm not sure of what I should do : Should I massage the plaque (how?) or should I wait? Should I get more erections? Should I order a VED? I'm calling my doctor after the holidays so that he can get me a meeting with an Uro ASAP.

What are your tricks, suggestions, comments or tips on immediate response when a flareup shows up? I'm in a total mess right now both physically and psychologically. I know I'm not alone

Many thanks to all,

Thisisnotcool

Actually, it's the pain : Advil doesn't work. I need something stronger... I'm allergic to peniciline Tx

George999

The ONLY drug likely to relieve the inflammation is Pentoxifylline.  Unfortunately most urologists know next to nothing about effectively treating Peyronie's (wait and see what happens is what they say when they don't have an answer), and they refuse to prescribe it since it is an off label use and they are not familiar with it.  But it is absolutely the number 1 most effective drug for Peyronie's, the sooner the better.  Urologists, after waiting and waiting and waiting will usually try to get you on something like Potaba or some other useless treatment because Potaba, although not very effective, extremely expensive, and nasty in terms of side effects and user friendlyness is FDA approved for Peyronie's.  Unlike Pentox which is a cheap generic drug, Potaba is an expensive patent medication.  Doctors don't believe that what has happened to you can happen.  They like to believe that once Peyronie's "stabilizes" it is no longer a problem.  But actually flare ups are quite common.  Most doctors just refuse to acknowledge them.  Dr Lue in San Francisco and Dr Levine in Chicago are the fastest ticket to a Pentox prescription.  I also believe the VED can be helpful in controlling Peyronie's inflammation, but probably not so much so as Pentoxifylline.  Sorry to hear you are going through this, but best of luck to you in getting a script for Pentox and hopefully some relief from this crap.  - George

Thisisnotcool

Tx George. Pentox is the plan indeed. From reading the forum I 've realized it seems to be the best option right now. Now, all I have to do is find a Uro in Montreal who's got balls.

Tx

chiguy

What were your symptoms 10 years ago and did they go away?

I have taken Pentox for a week or so now, the inflammation is virtually gone.

Thisisnotcool

10 years ago... Well if I remember correctly : I already had an upward curve since I was a child and at some point while having sex, I hurt myself on her pelvic bone I guess. The uro I saw at the time prescribed Vit E which I took for many months. The pain didn't last very long (one or two weeks) if I remember correctly. The curve stayed and I don't believe it was a lot different then the one I always had. So I decided to live with it : it didn't hurt, plus the girls just loved the curve! Curve approx 40 degrees and banana shaped .

That's when the change of situation happened about a week ago. It started to hurt real bad and at first I tough it was an herpes flareup but no : it was peyronies. The plaque is longer but thinner. I may have a new bb and the base (God I hope not). Now at least today, it hurts less then yesterday so I guess I'm improving.

For now, the curve is very similar but I know that could change. I am going to the left 0 to 5 degrees. Not sure that was the case 2 weeks ago. So now I believe pentox and carefull sex could be the plan until I die or something. I just hope that curve won't change until then. I don't mind the curve as it is. I just don't want to get worse + I don't want any pain right (same as everyone I guess). Now for the long process : first the GP (1 or 2 weeks) + the uro (1 or 2 months or who knows how much time if he doesn't want to give me pentox). I have to be stable until then.. :)

That's the story

Tx

skunkworks

Quote from: Thisisnotcool on December 30, 2009, 02:44:55 PM
Tx George. Pentox is the plan indeed. From reading the forum I 've realized it seems to be the best option right now. Now, all I have to do is find a Uro in Montreal who's got balls.

Tx

Bring studies with you. Print them out, or email them to the doctor beforehand.
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]

why

Happy New year to all.  Been taking Pentox now for two months ... no improvement.  In fact I feel a further spreading of plaque or hardening along the shaft.  When erect my penis feels almost like stone!  Erections are painful with a sharp bend at the top.  I notice (when I look) that the head does not enlarge like it used to. I guess this is due to impaired blood flow. When flacid my penis looks normal.  Quite honestly I'm tired of thinking about it.  If it wasn't for the painful erections waking me up at night i could probably live with this well enough.  Yes, I feel discouraged but I will continue with the Pentox, vit E, MSM, and L-arginine for awhile longer.  VED's are another option but I will wait to see if there is any improvement in the coming months.

Old Man

why:

IMHO, at this point, you should not wait any longer to start the VED therapy. Waiting any longer only lets the Peyronies Disease symptoms grow and cause more problems.
Go to the VED board and read as many posts as you can to get a better picture of what a VED can and will do for Peyronies Disease.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

sunsetsonfire

Hi Everyone,

My first encounter with Peyronie's started last July (though I wonder if perhaps it was sooner and I just didn't realize, because I would occasionally have the "hourglassing" happen as my erection was starting, but it would go away as I manually stretched the skin).  It seemed to happen virtually overnight as far as the curvature, and I started basically at a 45 degree angle.  At first my uro said to just take vit E and we'd see if it went away on it's own after around 8 months or so.  

Luckily I found this forum and got educated and was encouraged to action by so many wonderful people who helped me feel not so alone with this kick to my masculine ego.  I went back to the doctor and got a Rx for Pentox, am also taking L'Arginine and Carnitine, as well as doing the VED 26 week therapy.  

Now that I am on my 7th month, the curvature has worsened to almost a 90 degree angle.  I wrote to my uro and inquired about getting the v injections.  He had said in the past he would be willing to do that. Am waiting for a reply.

I'm not sure if my "throw everything but the kitchen sink at it" approach helps or not, but I guess when one sees his penis staring back up at him from a 90 degree angle during erection, a sense of urgency starts to set in.

So the reason I'm writing is to try to get a better idea of other people's experience in terms of fluctuations in curvature, severity of curves (anyone else ever have their curve at any point in their peyronie's reach that pronounced of a curve?), and what exactly is an "active" stage of peyronie's?   I know from reading up on it that the so-called active stage lasts like 8 to 12 months on average.  What happens when the active stage is over?  Does it get better for a while?  Or does active mean that this is the time the curve grows bigger and at the end of that active stage it just stays at whatever god-awful curve it ends up at?  Good Lord, I couldn't bear it if the damn thing ends up turning back towards me.

So when someone says they have been dealing with their peyronie's for several years, is there only one active stage from where the problem started in the first place, or are there several active stages where it'll settle down for a while and then starts up again later?  And again, when it "settles" after an active stage, is there a chance it can get better (the curvature straightens out somewhat) or does it just stay frozen in whatever angle it was at in the end of the active stage?

Another question... how would one know whether or not their plaque has "calcified"?  Is that more a time issue, or does it look or feel different?  I noticed a lot of people talking about a lump or indentation on their penis, but for me I can't see anything protruding, and other than feeling a little harder area on the top side, it's nothing that is real "obvious".  I guess there's a part of me that hopes that since there doesn't seem to be a "ton" on plaque built up there sticking out that maybe it will eventually be able to work it's way out.

Sorry to ask all these questions.  I suppose it's just a part of me trying to understand this whole thing a little better and take a peek at what the upcoming months may or may not hold.  I know different people have different experiences, but I'd like to know of different things that "might" happen as I head towards the "latter" months of the active stage and then after that.

Despite feeling terribly depressed at the extreme angle the curve has built up to, I suppose I do feel somewhat lucky in that so far (knock on wood) pain hasn't really been an issue.  Some dull pain or twinges now and then, but overall nothing that bothers me.  

Thanks for letting me ask others about their issues with curvature and experiences.


LWillisjr

sunsetsonfire,
Sorry to hear of your progression. Generally the active phase lasts for the first 12-18 months, during which your curve can get worse. In theory (if there is such a thing) after the active phase you become "stable" and your curve should stay the same. I'm sure you have read on th forum that many of us have tried several things, and you have started the meds and using the VED. Calcification is something that happens over time. After 18 months your palque can begin to calcify. But it is a fact that some never experience calcification and others experience flare ups in the "Active" stage. It is a strange disese that manifests itself differently in so many of us.

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

sunsetsonfire

Hi Les,

Thanks for your reply.
Could I ask something else?  You mention that during the active stage it can get worse (as I've so far experienced).  By the same token, can it also "improve"?  Or is the curvature a one direction thing?  I see on your posting signature that it says you are "1.5 yrs peyronies free".  When one is peyronies free, does that mean you are basically back to "normal", or just that it isn't getting any worse?  And if normal, did it get that way through the various treatments (VED, Pentox, injections, et al), or surgery?

Starting next Wednesday, I'm going to be getting the V injections.  Not really looking forward to it, but at this point I'll try anything to get back to normal.  It's kind of funny... when this started I was at a 35 - 45 degree angle.  Now that I'm getting closer to 90, I would be happy to be at the 45 again.

Was your curvature ever near the 90 degree stage, or am I one of the more severe on this board?  :(

Thanks for your time.

Dave

CP

Hi.......does anyone know of a source to obtain Potaba without a prescription?   The VA Doc recommended it to me along with Vitamin E.   However, the VA does not provide this Rx.


Any help on this question?

zeppo

Regarding the  Potaba, it is the same thing as  PABA, which can be bought at
any health food store.   I bought  the Solgar brand recently (550mg dose), and
used it for about a week before  experiencing  some  gastric disturbances.  I'm avoiding it for now, but intend to try again in about  a week or two.  
Like you, I am also using Vitamin E -  800mg per day.
Zeppo
Zeppo

LWillisjr

sunsetsonfire,

Yes I consider myself Peyronies free. I am back to normal but it was a long journey to get to that point. Many of the ones who have been on this forum for awhile know my story. You can click on the "My history" link at the bottom of any of my posts and it will take you to my history on this forum. I also have it posted at the following web link:
http://home.comcast.net/~lcwillisjr

Feel free to email me at lcwillisjr@comcast.net

I've had the V injections and can tell you what to prepare for.

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

zeppo

I'm new here, please forgive me if I am asking stupid questions.

Is a nocturnal erection a good or a bad  thing to have?    
I've been a Peyronies  sufferer for about 6 months.  I can count on one hand
the number of nocturnal erections I had during my life prior to becoming a Peyronies Disease victim.  
These days, nocturnal erections are becoming  a regular nuisance for me.   Perhaps I
had them  on a regular basis in my pre-Peyronies Disease  life, but never noticed them because I
didn't have any   pain associated with erections  in those days.
I am averaging about two per  week, and last night I had three.  In my case, these erections are painful, and cause me to wake  up in the middle of the night, thus losing sleep.   Last night, I had to wait ten minutes for the first  one  to subside.   Aside from sleeping pills, is there anything that  can be taken to eliminate these middle-of-the night nuisances?

Regarding erections in general, is it best to try to avoid them, and let the Penis  try
to heal itself of Peyronies?   Do erections  cause the disease to progress more rapidly?
Zeppo

chiguy

The more erections, the better. If you do not have erections, the fibrosis will advance. Erections are like exercise. It might be painful, the but the alternative is an increased state of the condition and no erections period. If possible, take painkillers such as motrin, ibuprofin, etc. until you can get on pentox.

why

It has now been 5 months since the onset of Peyronie.   The bend has increased but pain has subsided.  Intercourse is difficult but possible.  The bend does not appear until the penis is fully erect.  Inserting the penis before fully erect I think keeps the penis more straight in the vagina.  I have been taking pentox 400 2x day.  L-argine, MSM, Vit E, Vit C, and ibuprofen.  Any suggestions on how long to keep taking the Pentox before throwing in the towel?  Next step perhaps VED.  

zeppo

Chiguy,
Thanks for your feedback.   Is it your opionion that frequent erections may help reverse some of the fibrosis?  The only  problem I am having with erections is  that they hurt like hell.
Thanks, Zeppo
Zeppo

chiguy

Without any treatment, I don't think erections can reverse fibrosis. Apparently, 1/3 of cases do resolve on their own, but there is no indication it is from erections only. Erections may help prevent the spread of fibrosis. If the fibrosis continues and you don't get erections, this could cause ED.

I went through the same thing for a few months, then one day the pain subsided. Motrin, ibuprofin, or alleve may help with some of the pain. Try to get on the pentox as that should clear the inflammation and thus the pain.

BrooksBro

I just came across this.  My take is, night time erections are normal and critical to good health.  I suspect the lack of them could be a factor in developing peyronies.

During a normal night of sleep, the penis may be erect for a total time of from one hour to as long as three and a half hours.  Research urologists have found that the increased blood flow during these nocturnal penile tumescence episodes may prevent excessive collagen from forming in the erectile tissues  of the penis.  They are aware that the increased fiber formation in the erectile tissues could lead to tissue-cell death and eventual loss of erectile function.




eng_man

Hi. I was wondering whether Peyronies could result in one side less rigid than the other. I can get an erection, but the left hand side is softer and slightly narrower, but having searched on here and online, I can't seem to see whether this is a sympton or not? Would this affect the ability to have sex? The other side seems perfectly fine.

jackp

eng man

First you need ot go to a good Male Sexual Function doctor and have a Color Doppler to determine exactly what the problem is.

Jackp

chiguy

You need to go get the penile doppler ultrasound done through a male sexual function specialist. It is the only way to truly tell. A lot of times, the doctor misdiagnoses the issue. Also, it is the only way to tell where the plaque, if any, is located. Where are you located? We can point you in the direction of a good doctor.

LWillisjr

Quote from: eng_man on February 17, 2010, 05:42:07 AM
Hi. I was wondering whether Peyronies could result in one side less rigid than the other. I can get an erection, but the left hand side is softer and slightly narrower, but having searched on here and online, I can't seem to see whether this is a sympton or not? Would this affect the ability to have sex? The other side seems perfectly fine.

I'm not aware of any symptoms of this type related to Peyronies disease. But you definitely have a different type of symptom. It would make sense to get it checked out anyway.

As far as whether will affect the abilty for sex, I think only you can answer that one.

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

Francis

Hello everybody. I'm new to this forum (age 23). I suffer from peyronies disease since december 2008.
Multiple plaques developed on both sides and on top of the penis and this made the upperhalf shorter, less width and slightly curved upwards and to the right. It became much harder to get and maintain an erection.

I diagnosed the disease myself (to stupid / embarrest, i did not look for help at this moment) and decided to wait and see, convinced that I could belong to the group that spontaniously recovered. After a period of initial progress (some plaques seemed to get softer, small increase in width and lenght) I was very upset to see that although the plaques sometimes became really soft (almost like normal tissue), they were all still there.

I've been to an urologist (I'm from the Netherlands), fairly late (after about 1 year) who told me that there was no effective treatment available.

My question is: isn't all 'progress' in the positive sense based on softening of the plaques? Is it even possible for areas of plaque to return to normal tissue in some of the latter stages of the disease (now +15 months).

I'm curious how the plaques developed in people who really made progress with the VED (like Angus and Old Man). Did the plaques also shrink, or did they only soften?

I also want to thank you for making and supporting this forum. For almost a year this disease was killing me mentally. Reading some of the stories here made it clear that so many others of all ages are dealing with this affliction. This has been very supportive for me in dealing with the psychological aspects and being able to talk about it to people I trust.
Thank you!



 

newguy

I would say that plaques softening is a positive sign, but doesn't mean that the condition is going to reverse. A few top urologists have stated before that sometimes after years, they cannot feel plaque at all. This doesn't mean the penis has returned to normal, but perhaps it at least does mean that the active cycle of the conditon is over, and some healing is taking place. Using pentox (and mechanical therapies - VED etc), perhaps aids this process, and offers at least some chance of improving your condition. The positive thing about this approach, is that pentox and VED therapy has helped some individuals with longterm peyrone's disease, so it's worth giving this approach a year or so, to see if it benefits you.


Francis

Thank you for your answer Newguy. From what I've read on this forum, complete healing of this condition is most likely impossible for anyone, as scars don't tend to regenerate / restore to normal tissue.

At this moment I'm finding it very hard to start some kind of real treatment plan, because of the slow and sometimes mixed results. You also have to start spending a lot of time 'working' with this condition and that really gets me down, because all the time you are reminded of it.

For now I think I start living as healthy as possible and try to focus on more positive things. I don't want to let this ruin all the good things in life.  

newguy

Quote from: Francis on March 20, 2010, 02:15:38 PM
Thank you for your answer Newguy. From what I've read on this forum, complete healing of this condition is most likely impossible for anyone, as scars don't tend to regenerate / restore to normal tissue.

At this moment I'm finding it very hard to start some kind of real treatment plan, because of the slow and sometimes mixed results. You also have to start spending a lot of time 'working' with this condition and that really gets me down, because all the time you are reminded of it.

For now I think I start living as healthy as possible and try to focus on more positive things. I don't want to let this ruin all the good things in life.

The matter is difficult to deal with too, as there are different definitions for what the term 'healing' means to a person. For some people here, healing means that pain is gone, and their condition is stable (curvature not worsening etc), putting them in a position to either explore pentox/ved etc, or have surgery. For others 'healing' means that their condition is stable, but they wish to reverse some of the damage done, with the aforementioned treatments.

We do not have pentox can have 'some' impact on the composition of plaque, since it has been shown to stop progression in some individuals, and reverse in somewhat in others. We also know that traction and VED therapy can stretch the scar tissue somewhat and help restore some elasticity to scar tissue. I agree though, that scar tissue isn't typically something that lends itself is returning completely back to normal.

You're right that treatments can be slow. VED useage, and oral supplements like pentox are certainly not one month wonders, and require quite some time to see if there is a benefit in using them. Peyronie's certainly can have an impact on a persons mindset, and a persons priorities will probably dictate how they approach the condition. There isn't a right or wrong way to do that as such. I'm glad you're living healthily. That's something all people should try to do!!


joos

Hello guys ,

I can see there are lot of experts here on this matter and i would realy appreciate some help.I m from Croatia so please sorry for my bad english yet i hope you will be able to understand me.Few days ago I detected something that really disturbed me and I need advice.I am 30 years old and had history of chronic prostatitis and thats about it.For first time in my life I could not get erection and I was really trying to.But after half an hour of insisting i kind of did get some sort of partial erection.Now here is scary part;erection was normal at root of penis and kind of in penis head but in middle of penis it was thin and squezeed.I could not ejaculate ofcourse because it was generally soft but scene frightened me so much.
First thing i saw on net was this "hourglass" term and it was of course conected with Peyronie.Now what I have to say is that I DONT have any Lump ,plaque or anything I could feel on penis and never had.Also I do not feel ANY kind of pain whatsoever.Beside this hourglass efect no curvature visible.But still no erection.For past two months I had these strange feeling in urethra and dribbling and leaking but nothing hard.Also have been putting for couple of days Bepanthen oinment on shaft so dont know is this have to do anything with that.Help please ,I am terrified .Do you think it is Peyronie or Erectile Dysfunction or some kind of infection.Is this plaqueand pain thing MUSt for Peyronie or it can somply start by Hourglass effect?


THX in advance ???

George999

Joos,  The "hourglass effect" with Peyronie's happens ONLY with full erection.  So what you are observing is not necessarily meaningful and may be due to a number of other factors other than Peyronie's.  What you really need to deal with is the lack of ability to achieve erections.  The most likely culprit is either hormonal or circulatory.  In either case you need to make sure your waist circumference is not excessive.  The measurement around your waist should be less than 101cm.  If your waist size is greater than that, you need to modify your diet to get it lower.  Inability to achieve erections and risk of heart disease and diabetes go together.  You need to get control of your health.  The other issue is vitamin D.  You should have blood levels of 50-70ng/ml of vitamin D.  Less than that can result in metabolic and hormonal issues that cause inability to achieve erections AND many other diseases.   You need to be getting adequate vitamin D in the softgel form to make sure you are getting enough.  Ideally you should have your doctors help with this.  I wish you the best.  If you do have an hourglass form WITH a HARD erection, that is evidence of Peyronie's with or without palpable plaque.  But you need to rule out the other stuff first, since, unlike Peyronie's, the effects can be life threatening.  - George

joos

thank you so much George for your swift answer

You did kind of helped me  but...

I am generally very helthy person .Other than urinary tract problems I am almost perfectly healthy.Just few months ago I did full check on my body at private clinic even with colonoscopy and gastroscopy.All in my blood is ok except slightly high cholesterol.Now considering my weight ...I am still relativly active sportsman ,been training MMA(ultimate fight) for years so my size is quite big but it is pretty much all build up muscles.I am 1m 95cm and 105 kg,so it is a big weight but considering my height and built...

This was first time that this occured to me , so ...

You think this coulb be connected with urethra thing/urethritis...

George999

Joos,  Its about inflammation.   Systemic inflammation.  Inflammation is caused by too much omental fat.  This is fat on the INSIDE of the body, not on the outside.  It is determined by waist circumference.  One can be VERY fit and still have too much omental fat.  Cholesterol levels are a very good measure of omental fat.  Higher level of omental fat causes inflammation which causes cholesterol levels to rise.  Low vitamin D levels ALSO cause inflammation which ALSO causes cholesterol levels to rise.  Any rise in inflammation affects hormone levels and leads to ED.  All of this can also lead to urethritis.

The solution is to eliminate refined carbs (white stuff ... sugars, refined grain products, etc.) from the diet and add Vitamin D to the diet.  Also get rid of bad fats, especially trans fats.  Good fats such as fish oil are very important, but watch out for contamination.  Cod liver oil is BAD because it contains Vitamin A.  Vitamin A increases inflammation by competing with Vitamin D.  One should never take Vitamin A, but should use beta-carotene instead.  Exercise is also important, but you are probably getting more than enough of that.  Diet and Vitamin D are the big suspects.  - George

BrooksBro

Right on the money.

I recently learned about "normal weight obesity," also known as "skinny fat."  I am told this is common among people who quickly lose a lot of weight.  By reducing the fat layer right under the skin, their muscles now show more, and they look lean, but their body mass index is above the healthy range.  It is a ratio of muscle mass to fat tissue (muscle weighs more).  Unless they are very careful with their nutrition and exercise, the weight they lose can be more muscle than adipose tissue.  Skin fold and bioelectric impedance measurements may show normal or even athletic body composition, but that is misleading, because they do not measure the underlying fat.  

Balanced nutrition (fat, carbs, protein) of adequate total calories, strength training, and limited "fat burning" cardio, are all necessary to avoid this.  In my opinion, Dr. Atkins was wrong; adequate carbs are critically important, especially as the muscle to fat ratio improves.  Lots of protein without carbs, won't get the building blocks into the muscle fiber.


why

Update:
It's been more than 6 months since the onset of peyronie's.  I had been taking Pentox along with other supplements.  The pain has subsided, but no other improvement. I exhibit an acute bend at the upper end of my penis.  This makes intercourse difficult but not impossible.  I have now stopped taking the pentox and am now using a VED.  Perhaps in a month i will see some progress.  This forum has been a great source of comfort and information.  Thanks to all.  

Woodman

Does anyone know how long it takes a for a plaque to pop up and can be felt after an injury? I was using the fast size and two weeks ago I woke up the next morning and noticed something wasnt right I must of stretched a little too much apparently. Its been two weeks now have and had a lot of pain & soreness like you do with Peyronies Disease when a new plaque starts. Now I notice an additional lump or plaque near the base.

Is it possable to have a plaque pop up and be able to feel it in two weeks time.



newguy

Quote from: Woodman on March 24, 2010, 01:32:35 PM
Does anyone know how long it takes a for a plaque to pop up and can be felt after an injury? I was using the fast size and two weeks ago I woke up the next morning and noticed something wasnt right I must of stretched a little too much apparently. Its been two weeks now have and had a lot of pain & soreness like you do with Peyronies Disease when a new plaque starts. Now I notice an additional lump or plaque near the base.

Is it possable to have a plaque pop up and be able to feel it in two weeks time.




It sounds like the plaque position was troubling for you in relation to VED use, and that traction had been more promising, so I'm sorry to hear about this setback. I'm sure others will chip in, but I don't think there is a typical amount of time at which plaque appears. I'm say, to stay on pentox etc and keep away from any mechanical methods (traction, ved) for the time being, until the pain is gone and you know where you stand.  

zeppo

I am a fairly new Peyronies patient,  diagnosed in October, 2009.  
From what I've read on this site, it appears that in the active (acute) stage of the disease, which lasts from 12 to 18 months, calcification has not yet occurred.  I guess I am still in that stage of the disease.  Whenever I have  an erection, it is accompanied by pain, but when flacid there is no pain.  
Question: when calcification occurs, and  the disease is no longer in the active stage,  will the erection pain disappear, or will it persist for  the rest of my life?
Thanks  
Zeppo

newguy

Quote from: zeppo on March 27, 2010, 10:06:28 AM
I am a fairly new Peyronies patient,  diagnosed in October, 2009.  
From what I've read on this site, it appears that in the active (acute) stage of the disease, which lasts from 12 to 18 months, calcification has not yet occurred.  I guess I am still in that stage of the disease.  Whenever I have  an erection, it is accompanied by pain, but when flacid there is no pain.  
Question: when calcification occurs, and  the disease is no longer in the active stage,  will the erection pain disappear, or will it persist for  the rest of my life?
Thanks  


Some individuals have troubling  issues with very long term pain, however you'll be happy to know that the vast majority of men with peyronie's disease do not. It varies from person to person, but it's quite uncommon he suffer pain after 18 months - 2 years. There is a thread on the site for men suffering pain for unusual amounts of time, but I don't think you need to worry about that issue right now.

From reading through your posts, I notice that you tried PABA but it disagreed with you, and now you're just taking vitamin E. I would advise you to start taking Pentox, as that really is the only oral supplement with firm science to back it up. Try combining it with l-arginine and viagra. I would discuss this with your doctor, as it seems like a sensible move , especially as you haven't been suffering with peyronie's for all that long really.

zeppo

Thanks for the info NewGuy.  
Are you currently using,  Pentox, and l-arginine?  Has this protocol reduced the curvature?
Thanks, Zeppo
Zeppo

newguy

Quote from: zeppo on March 27, 2010, 05:48:15 PM
Thanks for the info NewGuy.  
Are you currently using,  Pentox, and l-arginine?  Has this protocol reduced the curvature?
Thanks, Zeppo

Hi Zeppo,

My situation is rather complex. I'd suffered from peyronie's for many years before using any treatment. Over that time I'd say it either got slightly worse over the yers, or t the very least didn't get any better. Unfortunately I managed to inure myself again, so there is possibly worse to come in my case (though I hope not). However, after I started taking pentox, l-arginine, viagra combo, I would say that (from looking at photo comparisons and my own view) that progress has definitely been made, yes. Again, I'd say that this has been gradual, and has probably levelled out now. I think people should take pentox for at least a year, and use the VED and/or traction. Evereything at your disposal really. Health living, exercise etc. The  after a couple of years re-evaluate your position.



Old Man

newguy:

I totally agree with you about using the VED therapy regardless of what other treatments one follows. The added oxygen flow into and out of the penile erectile tissues can only help. In my experience with working with many guys in my hometown has proven to me that the VED therapy is one of the best effective "remedy" for Peyronies Disease symptoms. And, as a bonus, it gives one back the ability to have good erections for sexual activity.

My total desire for guys on this forum is to realize the value of VED therapy. I strongly and highly recommend VED usage over any other form of therapy. Oral medications that enhance blood flow and help with pain are an added plus factor as well.

In my own case, the VED therapy worked when all else had failed over the now 56 plus years of having several bouts of Peyronies Disease.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

cowboyfood

Hey everybody,

I thought I'd provide a quick update on my condition.

From what I can tell, I one of the few who within a few months of noticing something looked different started with some of the board's more popular treatments, big time.

Briefly, in late December of 2008 I noticed a slight upward bend, then a dent in January.  By the following April I was using the VED and L-Arginine, ALC, and all natural vitamin E.  I added Pentox in May.

I became extememly depressed about the matter in April, thanks in part to reading many posts on this board.  I'd didn't know Peyronies Disease was even possible.  I couldn't get an erection for weeks that April...I thought I was doomed.

But, despite the reality our forum offers I willingly followed the advice and encouragement of our board's veterans.  

Over the summer and fall of 2009 my upward curve became mostly eliminated, but the dent appeared on the opposite side.

Over the fall the dents gave me a slight hourglass effect.

But, throughout this whole time my erections were becoming great.

Over the last several months is looks like the dent is not as apparent as before.  My erections are better than ever.  

So, as I approach 16 months of knowing about the condition, I am extremely thankful that my penis is as straight as it ever was and the hourglass effect is not that noticeable and looks like its improving.  It's more noticeable when I'm partially erect.  

Hopefully, I am stable.  It seems to be. And, the best news is that I rarely think about the situation.  I never thought that would be possible.

I wonder sometimes if I had not started with the VED, Pentox and supplements if my situation would be different today.  But, I prayed many, many nights that my situation would not get extreme and plodded along with the VED everyday.  

Oh, I used Viagra nightly from April of 2009 until about a month or so ago.  

I'll post a more detailed history in several weeks.

thanks everyone.

CF

Currently:  L-Arginine (2g), Vit D3)

joos


Time for little update ,
considering my situation I am still in doubt do I have Peyronie or not.So let me introduce some new facts.First of all my penis sometimes hurt inside (urethra) when flacid ,but never hurts when erected.Now for this couple of weeks I have been having trouble getting erection but few days ago I managed to get full erection and my penis looked normal as it used to be when full erected.Problem is that at beginig of erection my penis is hard at the base, but soft at the top, and from that comes that hourglass effect.My penis simply looks thin in middle also when is flacid ,right in portion below penis head.When I manage to fully erect it it looks normal as always was.It seems like there is some kind of obstruction in middle of my penis???Could this be Peyronie? Or is this some form of ED?I repeat ,I basicly do not feel pain of any kind,dont have curvature,but when I have partial erection I have this hourglass effect.And also during night sometimes I have full erections and sometimes no or partial for couple of days...

C'mon George ...help...

You are so helpfull people

thanks

George999

Very honestly Joos, I see nothing abnormal about the hourglass thing.  The pain is another story, but that is going to take a urologist to figure out.  If your erection itself looks normal when hard and there are no palpable lumps when flaccid, that does not indicate Peyronie's to me.  Others can feel free to correct me if I am missing something here.  - George

joos



You are so helpfull people


Thanks again George,


See thing thats bodering me is the fact that my penis never looked like this,and that is the fact number 1 .My penis has this hourglass appereance (not always) when flaccid , at base is wide and soft , I would say normal but than right below penis head is thin and stiff ,not hard but I can feel edges all around it.When I feel excited my base reacts and my upper part stays thin and stiff.After some time or little =manual= help it normaly erects .I have perfectly normal ejaculations and erections with no pain but evident dificulty in achiving erections even during night!I have this pain in urethra and exactly in that part my penis is thin from outside but I NEVER heard that this could happen because of prostatitis/urethritis.However today I am getting a course of antibiotics ,see if that is going to resolve something,but try to understand me MY penis never looked or behaved this way.Know it doesnt sound exactly like PE but never heard for anything similar before.My concern is that this is some kind of inital stadium of PE since this started only couple weeks ago!

Once again big thanks... ??? ??? ???








thanks
[/quote]

joos

i just recived a course of Doxycycline (Vibramicin) for 10 days , so we will see is urethritis/prostatitis causing this weird thing .Also as you mentioned before I started taking vitamin D , plus on my own vitamin E(all from TwinLab) .Any experiences with quercetin???

YMENOW

Quote from: Woodman on December 02, 2009, 02:42:47 AM
I wanted to ask you guys who have experianced shinkage from Peyronies Disease your experiance. Did it just come on then come to a stopping point quickly or do you noticed it getting worse slowly. I notice after 18 to 19 months I started to shrink. I ve loss as of today a little more then a half an inch in length and some girth. I ve now had Peyronies Disease for about 30 months.

Thanks

Woodman

It seems like a nightmare when you say that it has been 30 nightmares.  Right now, it seems as if it has been only a short time with this Peyronies Disease, but it has been some time.....

I have had the same pain, the bend and then the shrinkage and it seemed to come on and then go away as the urologist said it would.  Since I had so many health issues, I really didn't know what to do and this Peyronies Disease was 24/7 in my life.  However, I wanted to do something about it, so I started the Acupuncture since it would not interfere with the medications that I was taking.  Since the acupuncture and some natural Chinese herbs, it seems as if the "dents" have gone away and it seems that I don't feel anything at the base of the shaft and the upper part of it. I have had more erections during the night since I started the acupuncture.

However I have not had any increase in girth or length as I was hoping.  I ended my last session this past week with acupuncture because I was too anxious to start the VED therapy which I read so much about in the Forum.  I ordered my VED this past week and hopefully it will be here next week.  If I have any problems I am sure I will be helped by the good people on the forum.

I will see my specialist this Tuesday to see what he thinks and if he will recommend some course of action.   I wish that I had done my research earlier about Peyronies Disease.  
Should I tell my Doctor that I will be doing the VED therapy?  I have read pros and cons to this.

Thank you all
Ymenow


Old Man

Ymenow:

By all means tell your doctor that you are using the VED therapy. It is non invasive, and does not interfere with any meds or other treatment you are on, etc. He may or may not agree with your decision to start the vacuum therapy, but there should be no problems with your using it as far as any medical reason is concerned, etc. It should be your decision, not his/hers.

The success rate of VED therapy seems to questionable by some doctors, but if you go by the success rate of the guys on this forum, it is successful in most cases. However, each and every case of Peyronies Disease is different from any other and the results of each are different. You only have to trust your judgment about its use. Just use extreme caution with the amount of vacuum that you use and don't overpump while using the 26 week protocol posted in the VED board section of the forum.
The least result you should achieve is better erections, a more healthy penis and if there is any recovery of size and making the penis straighter, that would be a plus.

There is a lot of experience with VED usage by members of this forum, so feel free to ask any and all questions that may arise when you get your device. We are all here to help each other.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

ComeBacKid

I saw the shrinking as well, loss of length, but more loss of girth as well.  It came on more in the beginning, the pentox helped me regain size, as did the VED.  I also noticed a hardening of the tissue, which we know thing comes from an over active immune system attacking our own penis tissues, the constant inflammation leads to hardening, shrinking, and deformity of all kinds.  Also since the tissue is damaged it leads to venous leakage.  

Comebackid

YMENOW

I am into the B cylinder and it took some adjustment.  Finally I got the right fit with the outer ring and got a good vacuum.  I was surprised that it felt different in the B cylinder and the shaft hit the sides except for the right lower part of the shaft.  Could this be the plaque area where it is not responding to the vacuum?  I also noted that I didn't get the length as in the A tubing so I understood that part of it.  Will this plaque break down and I will eventually see the whole part of the shaft fill the cylinder?  The posts have been very helpful and all expressed improvement while using the VED.

The best way to know that you are doing the right thing is by checking it out with those who have been through the experience; hence, I am thankful (CBK OLD MAN and others) for any information I can get.  My doctors would not say yes or no so I am going with my instincts in this matter.  I am 66 and not giving up anything and I believe my wife is definitely on my side of the issue.

My wife believes that there is improvement in the erection quality....When will I be ready for the Klieg lights?

ymn


wmn