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 and told me that the hard spot was a plaque. He only prescribed me Colchiquin and Diprosan but other than that he just said I should wait and see what happens since I had had the same plaque with no changes for the last 5 years with no consequences. My sex life has not been affected at all by this plaque and I have never had any pain or noticeable bent but I am still worried. I would like to know what are the chances that the plaque will stay the same size as it has for the last four years or if there is a chance it will expand and create future problems? and also if it is wise to just 'wait and see' as my doctor suggested? Is there a chance the plaque will eventually disappear? and are there any side effects from the medication he prescribed?
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 and told me that the hard spot was a plaque. He only prescribed me Colchiquin and Diprosan but other than that he just said I should wait and see what happens since I had had the same plaque with no changes for the last 5 years with no consequences. My sex life has not been affected at all by this plaque and I have never had any pain or noticeable bent but I am still worried. I would like to know what are the chances that the plaque will stay the same size as it has for the last four years or if there is a chance it will expand and create future problems? and also if it is wise to just 'wait and see' as my doctor suggested? Is there a chance the plaque will eventually disappear? and are there any side effects from the medication he prescribed?
Personally, I would say that if the area has been like this for such a long time with no curvature or pain, then there isn't much to worry about at this point. Perhaps past injuries/abnormalities can point towards susceptibility to future problems but we're talking about five years here, so whatever is present doesn't appear to be casusing you problems and is likely stable. With peyronie's disease the "wait and see" approach is usually ill judged, but in your case it perhaps is the correct advice. If you ever experience pain, or a change in curvature or the hard area, then you're in a very good position to act immediately (by taking pentoxifylline and using traction or vacuum therapy). My hunch is that there is nothing to worry about. That's just my take on it though. I'm sure that others will chip in too...
I agree with Newguy. What seems to be the critical time to treat Peyronies is when it is what is called active. This is generally the first 18 months of the scar appearing. Unfortunately many urologists recommend a wait and see during this period, but those of us on the forum recommend treatment during this period as quickly as possible.
As state in your case you are well beyond this with no problems at this point. Just monitor for any changes and don't worry about. Avoiding rough sex in the future might also be advised as this can definitely be an initial trigger for scarring/Peyronies to occur.
I would like to know if anyone has any experience with injections of Diprospan? I have had Peyronies for 5 years and it has been stable all this time, no pain or complications at all, sex life is good but I have had a plaque for all this time and I recently changed urologist and he suggested I could try this medication. Does anyone know of any side effects? is it even worth trying this is my condition has been stable for so long? is there a chance it could trigger the creation of plaques again? The doctor also recommended taking Colchicine orally so same questions apply for this medication.
Thanks for your replies, they are reassuring. And how about the medications that the doctor recommended Colchicine (oral) and Diprospan (injection but not on the penis), do you think I should still take them after all this years? will it help at all or could it make things worse?
Thanks again!
Zhukov
You will get differing opinions on this. Many along with myself believe that once the Peyronies Disease stabilizes that there is little you can do with meds. If you Peyronies Disease causes pain however, several here continue taking Pentox or other meds to help with the pain. If you Peyronies Disease is causing other issues, then you will need to investigate other paths like traction, VED, or surgery.
If your Peyronies Disease is not causing any problems.... no pain, no problems with intercourse... then I would consider yourself lucky and focus so much on your Peyronies Disease.
I'll be 22 next month, but I believe I have developed Peyronie disease through injury.
Does catching it early give any advantage or is it once you get it you really lose control of where you are heading? I haven't been to the doctor yet, but over the past few weeks I've developed a small lump on the left side mid-shaft and a decent size indention mid-shaft on the right. I really don't have any pain or bend other than right under the head on the right side where I can feel a hard piece of tissue and during erection the head of my penis twists a bit, although it sorta feels like my entire penis has twisted a bit, but I could be wrong. It takes a bit longer for me to get an erection as it gets half way erect and stales, but I can stimulate it the rest of the way and it can get pretty rigid after a minute or so. I've have noticed a bit of reduced girth, but my length seems ok so far, at least I haven't noticed a huge different.
Anyway I bought these supplements
Acetyl L-Carnitine - 750 MG per day
dl-alpha E - 400-600 I.U. per day
Omega-3 Fish Oil 1200 MG per day
One a Day Energy - 1 per day
I'm not sure if I should be taking more and of what. I've read up on the forums on other supplements, but I'm not sure if or what else I should be taking.
Another question I have is if I visit my GP and he feels the plaque can I have him prescribe pentox or do I have to visit a Urologist. If I need to visit a Urologist is there a good urologist In or around Central Texas that will know about Peyronie disease and not just give me the "wait and see" treatment that it seems a lot of people get.
This is a pretty depressing development as I just started seeing this girl and this has seriously put a lot of strain on my emotions, lol I'm also a virgin so compound that upon the anxiety train.
Go to the PDS Resource Library and print out the Dr. Lue studies on pentox, study it so you know the results, and take it to your urologist and lead on him for pentox, that will help you if you get on it early. I wouldn't waste any time screwing around with other doctors, go to a urologist, tell him you'd like to try pentox for at least six months, but try to get a refill when that runs out, you want to be on it longer, it seems to help more than. If I had no one to get pentox from and I only saw modest results, knowing what I now know, I'd exaggerate the results to get another six months of it. Its sad you have to do that, but I really believe it takes longer than 6 months, its a very slow process as it blocks the autoimmune system, replacing cell by cell. A lot of doctors won't listen or will BS you cause they don't know enough about the disease. If I could of gotten on it really early I'm sure I'd be in great shape right about now. Its challenging when doctors don't listen, or won't listen to you. Print the studies youll probably need them! Seeing the impressive results from this drug,but recgonizing that some have seen no results, I say get on it ASAP!
Comebackid
Thanks for the reply and tip, I hope I don't have to fight too much.
On the subjects of supplements I am confused on the differences between Acetyl L-Carintine, L-Carintine and L-Arginine.
They are some of the 21-22 amino acids. Proteinogenic amino acids are found in proteins. The body can make half of these, while the other half (essential amino acids) must be consumed in the diet. Arginine is one of the essential (and proteinogenic) amino acids. Non-proteinogenic amino acids are not found in proteins. Carnitine is a non-proteinogenic amino acid. The "acetyl" part means it is a chemical compound, rather than the pure form. We know aspirin is acetylsalicylic acid. Aspirin is the synthesized version of the salicylic acid that naturally occurs in willow tree bark.
L-arginine and L-carnitine are found inside cells. Acetyl L-arginine and Acetyl L-carnitine are dietary supplements.
Quote from: zariche on July 15, 2010, 02:37:28 AM
On the subjects of supplements I am confused on the differences between Acetyl L-Carintine, L-Carintine and L-Arginine.
Intresting, so should I be taking all 4 kinds? I saw regular l-Arginine/Carnitine at the store and wasn't sure which to get. Since you say half of them can be made by the body while others must be consumed I assume it's best to take arginine too.
As for erections, the consensus is that it's good to have strong regular erections. Though is it more helpful or harmful to tighten up and force as much blood into the erection as possible or is it better to just relax as much as possible but in result don't get as rigid as possible.
Edit:
On a side note after ejaculation is it normal for the penis to engorge at the base first and then work it's way up and after ejaculation is it normal for the at midshaft to the tip to lose blood first?
Here is an example of what I mean, hopefully it demonstrates well enough.
|| -> /\ -> | | -> /\ -> ||
|| = flaccid
/\ = engorged at base first then slowly expands to tip
| | = fully engorged, but of course it's a bit less girth at the tip end which is natural for most I believe (although I have lost a bit of girth towards the tip which is why I am asking about the enogrement)
Honestly I can't remember how it was before the injury, but it seems a bit abnormal since the /\ effect seems to happen right after the lump on the left and dent on the right.
zariche,
Care to share any details on what type injury you suffered? It may help others here in identifying their own symptoms.
Also, I follow exactly what you are describing with your graphics. It may help you to understand that there is a tough sheath of tissue called the Tunica that surrounds your penis. You skin covers this and it surrounds all the internal parts of your penis. The tunica will expand to a point and then doesn't expand anymore. And generally will expand uniformly. In your case, your damage may be in the part of the tunica from mid-shaft to the tip. It still works but may not be as elastic as it was. So as blood flows in to create an erection, the lower part fills and expands first now. And the mid to tip section may be less elastic so it is slower or lags now. But enough blood/pressure does force it to is maximum stretch. When your erection starts to go down, this section is going to try to go down and return to it's flacid state first. Make sense?
Honestly I'm not fully sure.
I was stupid and used a pump 2 years ago and had problem getting it off, that caused some pain and discomfort for some time. Then recently I was trying Jeleqing for a few days and really I didn't feel any problem with doing it, but after a few days I noticed a sudden change in shape.
Although close to a month ago I was doing sit ups and felt a pop or something down close to the pelvic bone. I had hard time getting erections after that. Other health issues is that I have irritated/pain in pelvic muscles for the past few years. I also have a pinched nerve between my L5 and S1 vertebrae.
On related to graph I showed sometimes it's better and sometimes it's worse, is this due to inflammation or what?
This is probably one of my biggest concerns right now; how gentle do I have to be with Peyronies Disease? By this I mean how rough is too rough before it can worsen the condition? Can a tight grip or really anything related to any form of sexual act cause problems when in the acute or later stage. lol I don't plan to do anything rough with it, but if there is some dangers I would like to know; obviously I don't want to be afraid regular of sex or masturbation if I don't have to be.
zariche:
Well now, how rough is too rough! That is a question that only you can answer. Anything you do to your penis that causes any discomfort or pain would be considered too rough. There are many forms of manipulation that guys do with their penises that could be considered too rough. Rough or excessive masturbation that causes pain is the most common one being reported around the world. Woman on top sexual position might come in second to rough masturbation for the cause.
Other "unnatural" sex positions can and will cause micro trauma to ones penis leading to possible Peyronies Disease. So, one has to use their own body to determine what may or may not cause trauma to their most prized possession. So, analyze what your sexual activity is and then decide if it causes pain or discomfort, and if it does, then it would be considered excessive.
The above carries my usual caveat which is, it is my own personal experience of that of others confiding in me with their problems.
Old Man
Alright thanks, I just wanted to make sure I didn't have to feel like I needed to protect it like it was a house of cards and any slight touch could destroy it. Just didn't want it to kill my psyche oo regular unpainful acts. What is the danger of the girl on top besides slipping and crushing you, possible bending or something?
zariche:
The problem with the woman/girl on top is this: if you move one way and she moves another way at the same time and your penis slips out and she comes down on it real hard, it can actually break the tunica or the erectile tissue. If this happens, Peyronies Disease is usually the result of this accidental bending or crushing the shaft. If not corrected in some way, plaque will normally develop after a certain period of time. This time limit varies with the individual as each person is totally different than any other.
So, if you use this sexual position, it is real important that you both are on the same page when engaged in sexual activity. One slip out can do permanent damage that is real serious.
Regards, Old Man
You know I am curious if Vitamin E has possibly been the culprit my Peyronies Disease, or at least exacerbating it. I was reading about how Vitamin K deficiency can be made much worse by taking Vitamin E. My only known intake of Vitamin K is through a multi-vitamin that only gives 25mcg (31% of the daily value) but also gives 22.5 IU of Vitamin E (75% daily value) according to the label. That would make a 44% offset from the beginning and then adding in anywhere from 4-600 IU (1333-2000% daily value of) of vitamin E that would make up to over 2000% offset in daily value consumption. Obviously this math is most likely insanely wrong in terms of connection between the two, but it should express what I'm trying to get across in terms of lopsided intake.
The reason I think it could be the Vitamin E is because I started taking Vitamin E a couple of weeks before my flare up in hopes that it would help increase circulation to my pinched nerve, and then obviously once I saw the recent signs of Peyronies Disease I increased my dosage of E due to it being one of the main supplements suggested for Peyronies Disease.
So could low Vitamin K possibly cause inflammation in tissue or at least the calcification, as right now it sorta feels as like my entire body is a bit inflamed and not just my penis, though that just could be due to my pinched nerve causing irritation.
I tried finding some Vitamin K at the store but didn't see any. Since Vitamin E really has shown little in being affective I am going to get off of it for a few weeks to see what happens. Although it could just be a fools hope, especially since I have no idea if this could even possibly be related due to my ignorance of vitamin's, but it's worth a shot I guess. I'll still keep taking my Multi-vitamin since the dosage of Vitamin E is pretty minuscule compared to what I was taking.
Oh and I also noticed some blood in my bowel movement today, I'm not sure if that could be connected to anything.
Just wanted to report how well taking the supplements have helped with my blood flow. Since injuring my penis a few years ago with the pump my head would rarely engorge, also the underside engorgement was pretty weak. Now I am getting pretty good blood flow, it's not perfect, but it's much better than before. I haven't noticed a huge improvement in nocturnal erections, or at least I haven't woken up with many. Maybe that will come with more time on the pills.
On the side of Peyronies Disease I haven't noticed much negative changes recently so hopefully it will stay that way till I get to go to the Urologist in 1 week and hopefully get some Pentox.
Here's my regimen as of today:
Acetyl L-Carnitine - 750 MG per day
dl-alpha E - 400-600 I.U. per day - I removed the Vitamin E till I can get some Vitamin K, but I may take 200 I.U. ever other day to stay on it.
Omega-3 Fish Oil 1200 MG per day
l-Arginine - 1500-2000 MG per day
One a Day Energy - 1 per day
zariche - That's great news. Pycnogenol and L-arginine are also a good combination together. You could always add those to what you already take and see if you experience further improvement.
Just read up on pycnogenol, sounds like an interesting thing to try. Is there any side effects like vitamin e surpressing vitamin k? Anyway if I start taking it what is your recommended dosage?
It seems that hard plaque like thing under the right side of my head is gone, I'm not sure what that means though. I was having some annoying discomfort/pain at the area where the hard plaque was but that discomfort is gone. Is it strange to see the plaque disappear like that so fast? I haven't noticed any positive change in the dent or bump on either side though in mid shaft and the rotation is still there.
I take 50 mg pycnogenol along with 2,000 mg L-Arginine nightly. There was a study on the combination of 1.7 gram Arginine + 40 mg pycnogenol x 2, funded by a company selling these two products as a single tablet combination.
Quote from: zariche on July 21, 2010, 02:22:36 AM
Just read up on pycnogenol, sounds like an interesting thing to try. Is there any side effects like vitamin e surpressing vitamin k? Anyway if I start taking it what is your recommended dosage?
Interesting thanks. I've been taking 1500-2000 MG of L-Arginine through out the day, would it be better to just take the 2000 all at once before bed time to help with night time erections?
My urologist - Larry Lipshultz - said all at once, before bed, to help with night time erections.
Quote from: zariche on July 24, 2010, 06:04:10 PM
Interesting thanks. I've been taking 1500-2000 MG of L-Arginine through out the day, would it be better to just take the 2000 all at once before bed time to help with night time erections?
Ok I am having some very intense strange pain in my lower abdomen and in the area of my pubic bone. My testicles also seem swollen along with an irritated looking red scrotum and they (the testicles) sorta ache when touched. Not sure whats going on. Is it possible I have a pinched blood vessel or something in my abdomen.
From what I've read it could either be a symptom of CPPS or varicocele. It's most likely Varicoceles I guess since the increase bloodflow from the supplements.
Zariche, I believe you have prostatitis. the inflamation is actually from your perenium area. I would limit ejaculation to 1 time a week to let the prostate heal. Take a vitamin pack from gnc daily. Hope this helps. Lennyman
I did have my urine checked not too long ago and it was clean of bacteria, though I believe I do have the non bacterial form.
Would doing as you say help the symptoms of the non bacteria form?
yes I believe it would and read my posts w the cortisone cream ok
I'll look into cortisone.
It seems I do have some form of cyst right above my right testicle, it's pretty large, a bit larger than a pea, and seems to be on the spermatic cord or whatever its called. I won't be able to get into the doctor for another couple of weeks though since they are booked, gonna have to keep calling to see if they got any cancellations. It's pretty strange that all of these incidents are running together at once, although I guess all are related to inflammation.
lol I'd rather have two broken legs and arms right now than deal with something as mysterious as Peyronies Disease and whatever is going on with my testicles.
Edit:
lol I know I post and ask a lot of questions, but I'm still trying to get a grip on the supplements, disease and other subjects.
Anyway I just read up on some erectile dysfunction and I am curious if I am taking too many blood thinners and vitamin K suppressants, especially since I don't get much vitamin K in my diet. It seems since I've started taking an increasing amount of supplements that have the side effect as blood thinners I've had increasing problems with the time it takes to get an erection.
Overall I just want to figure out if taking these could be the reason for my prolonged time for getting an erection and making it harder to maintain. Though it could just be anxiety or the scar tissue/inflammation I want to be sure I am not taking too many blood thinners as I'm sure that cant be good for my health much less my erections.
I assume if I was older and I had bad cholesterol problems it would be beneficial for erections, but since I am 22 could it adversely effect me?
Vitamin E, Ginko Biloba, Fish Oil, L-Arginine (lowers blood pressure)
I think for the next few weeks I'm going to stop everything but L-Arginine, Acetyl L-Carintine and my regular One a day vitamins to see what happens, that is unless someone comes in and tells me I am wrong which is very likely since I'm still pretty ignorant.
I am very curious about my lumps. They are quite noticeable while flaccid and when I tried palpating them to see if I could feel hard tissue the lump seems to increase in size or even double. Is this something that happens to everyone? I really cant seem to think of a reason why it would do this other than it increases the inflammation, but even then it seems strange that it would have such quick increased swelling.
On a side note it seems like I have either a new hard nodule right below the head on top, but it seems it also could be a thrombosed vein though I am not sure. It has a small area that has a blue color to it as if there is a vein there but with the circumcision scar its a bit hard to see. It gets harder while erect but can be felt pretty tough while flaccid also.
Anyway wanted to report some significant progress with nocturnal erections when I assume is to taking Acetyl L-Carintine and L-Arginine right before going to bed. I've had some decent erections upon awaking and they are of decent quality.
Some of the symptoms you've mentioned in this thread don't sound peyronie's related. Perhpas it could be that you have another condition altogether.... or that you do have peyronie's but have another issue going on too. The testicle cysts, abdominal pain and what not, these really sound like something you should get checked out. Hopefully when you go to your doctors appointment, you'll be able to find out more.
Yeah I honestly have too many things going on to really point in the direction of one thing. Anyway I'll report back after I see the urologist on the 27th.
I got peyronie's when i was 22 as well. I was also seeing someone. I told my generalist about pentox and he was understanding. Toxicity levels and associated side effects are minimal . You're basically asking him/ her for the right to produce expensive urine.Print out the Iranian and other studies on this site if the need should arise to present your GP with something more concrete . Otherwise you'll probably have more luck with a GP given their systemic understanding of the body. Urologists tend to be very brute and " mechanically" i.e. surgically minded about things. you should probably add L-arginine to the list( perhaps it was already indicated?). Don't let this thing get to you. I let it get to me. You can get through this. When i was first diagnosed nothing was made available or could be found aside from vitamin E and " wait and see". It was a nightmare.
Thanks for the post. I know the progression is different for everyone, but I would be interested in hearing about your first symptoms and where it went from there since you were relatively the same age when you first encountered it.
Right now for me it seems like my symptoms are getting gradually worse every week. Right now I have multiple lesions on the right side and one on the left. Overall it hasn't produced a bend (maybe a very slight one to the right), but it has made it where past the lesions at mid point of the shaft the shaft does not engorge correctly until some time after the base has fully engorged and even then it doesn't seem to expand as much as it did even a month ago.
Right now when I feel the lesions they don't feel hard, but you can feel the bulge if you apply soft to medium pressure. If I use hard pressure to feel the deep tissue it feels like theres a divot like this ---v--- (the v being where the bulge is but how it feels when feeling the deep tissue).
Overall it looks and feels like a mess with it all lumpy and weird.
Just wanted to drop in and give some positive news to the forums. It's not exactly positive news in that the shape, but I have noticed a nice increase in the sensation that I lost with due to my initial injury over 2 years ago. I've had little to no sensation in my shaft and it was rather pale and cold most of the time; it felt rather lifeless and needed a LOT of stimulation to feel much. Though I took a shower today and it felt really strange as the water was running down, after trying to figure out what it was I realized that I had gained some decent amount of feeling in the shaft; I don't have the full sensation but I can actually feel light touch to the skin again. Over the past few days I've noticed a more full of life with a richer color and a lot more warm to the touch too. I think this has a lot to due with the increased bloodflow because as I stated before the head of my penis would rarely get engorged without me straining like crazy to trap it in there, now I can stay relaxed and for most of the time it will stay at least half way engorged compared to none that it was before. Overall I still have the dents, twist, and bottlenecking, but this is at least some promising progress. lol I just hope I am not jinxing myself and it's only a temporary positive.
I'm new to the forum so probably irritatingly packed full of questions.....sorry.... My husband was just diagnosed and been advised not to have sex or it will worsen the condition. Erections also cause him a lot of pain. Is his urologists advice correct? It makes sense I guess that time and no erections might help heal any injury while erections will pull at the injury/scar and make it worse.
This forum seems to advise differently though - a lot of people recommend the "use it or lose it" approach but is that when the Peyronie's has been diagnosed long after it began? What if the injury was recent? Is there a way to tell?
Pain is a natural indicator that something is not correct. I feel fortunate that my initial pain on erection was reduced to a very tolerable level with 30 days of taking a prescription anti-inflammatory medicine (I forgot which one). Other men are not so fortunate, and have pain for much longer than I experienced. Everyone is different. Approaching two years after onset, I still have some discomfort, which, for me, is well below the level of what I would call pain. Initially, yes, it most erections adequate for sex were very painful. Oral anti-inflammatory for 30-days reduced that. I think most men, but not all, have a large decrease in pain within the first 6-12 months.
Traction helped to restore length and girth, to the point my wife commented on the improvement. There are treatment therapies which have proven to improve conditions in many men. Some men fail to respond to less invasive treatments. I think it is a reasonable goal to restore function sufficiently that intercourse may occur.
DO NOT ACCEPT "take vitamin E and come back when you want to to discuss surgery!"Quote from: Starflower on August 16, 2010, 04:40:16 AM
I'm new to the forum so probably irritatingly packed full of questions.....sorry.... My husband was just diagnosed and been advised not to have sex or it will worsen the condition. Erections also cause him a lot of pain. Is his urologists advice correct? It makes sense I guess that time and no erections might help heal any injury while erections will pull at the injury/scar and make it worse.
This forum seems to advise differently though - a lot of people recommend the "use it or lose it" approach but is that when the Peyronie's has been diagnosed long after it began? What if the injury was recent? Is there a way to tell?
Quote from: Starflower on August 16, 2010, 04:40:16 AM
Erections also cause him a lot of pain. Is his urologists advice correct? It makes sense I guess that time and no erections might help heal any injury while erections will pull at the injury/scar and make it worse.
At age 30 I was diagnosed with this disease due to an injury during sex with the wife. I experienced significant pain during erection for the first several months. At the behest of this forum, I asked my urologist for a prescription of pentoxifylline. My pain started to go away shortly (a few months) while taking this medication. I suggest getting your husband on this medication as soon as you can. It's covered by most insurance and if your insurance doesn't cover it, it's very cheap.
Also, the consensus here (and of some prominent urologists as well) is that erections are a good thing because blood flow promotes healing and overall good penile health. For me, erectile pain, even at its worst, went away after a few minutes of arousal and then it was OK. It's probably a good idea to refrain from "reverse cowgirl" or other girl on top positions that could bend the penis during sex. Use lots of lubrication if you engage in any sexual activity.
The pain will probably go away but the psychological aspects of this disease are devastating. Seeking counseling, either couples or individual therapy, might be a good idea. It was very helpful for me.
best of luck,
Skjald
Quote from: Starflower on August 16, 2010, 04:40:16 AM
......... erections will pull at the injury/scar and make it worse.
This forum seems to advise differently though - a lot of people recommend the "use it or lose it" approach but is that when the Peyronie's has been diagnosed long after it began? What if the injury was recent? Is there a way to tell?
Starflower,
My doctor is pretty well known for Peyronies Disease treatment, and his advice is to stretch the scar tissue. It is the scarring the prevents the tunica from expanding in that area and causing a curve. I think you will find the advice of many on this forum supports that of some of our doctors that you should try to aggressively treat Peyronies Disease and that is best done by trying to break up or stretch the scar tissue. Either through the use of a VED or by using a traction device.
There are meds that can help address the pain. Many men experience pain at first but it seems to go away for some after a period of time.
Les
Well I just got back from the urologist. He told me that he didn't feel any plaque (although he didn't check too much), but did notice the puffed up area's on my flaccid penis. He did know of Peyronies, but said someone my age is less likely to get it which I already knew. He basically told me to come back or go to my GP if I noticed any major curvature, I do have the twist, but I agree with him that it may have been there and I just haven't noticed till now with the other issues. Overall I'm not exactly satisfied since I know for a fact that I am having a lot of strange issues and I didn't get any answers so I'm gonna try to get another opinion.
Yeah I honestly have too many things going on to really point in the direction of one thing. Anyway I'll report back after I see the urologist on the 27th.
Hi all,
This is my first post here, although I've spoken to some of you privately. At some point, I'll post my whole story, but right now I want to try to get a consensus, especially from some long-time sufferers.
About six months ago, I was diagnosed with Peyronies Disease, even though I had been going to the doctor for penile pain for 12 months. This means that I have had this for 18 months, at the end of the acute phase by all estimations. I have a very slight hourglassing, mostly visible early in the erection, with no dysfunction. I still have pain, but it has and is continuing to fade quite a bit. My confusion comes from a few different doctors saying contradictory things:
My most recent doctor says that, given the passage of 18 months with minimal deformity, I should be fine. Some doctors agree with him.
Other doctors, and websites, say that after 18 months, the condition actually worsens as the scar settles. Also, there is this issue of calcification.
Calcification aside, does the deformity worsen after 18 months on average, or not? Can anybody be clear?
I understand that calcification occurs after the acute stage and happens over time; is there a timeframe for when a patient can say he is "out of the woods" in regard to that?
Mostly, I just want to know if 18 months is pretty much a "safe zone" in regard to the development and progression of the basic deformity and if I have anything to worry about at this point.
Thanks.
I think most of us might say your condition is now "stable." I do not think you should expect to see it continue to become more severe, calcification aside as you said.
Thanks. It's so hard to tell with this problem.
WW.
My understanding is that after 18+ months you should be stable. Stable meaning that your condition should not worsen any. The plaque that is there causing the deformity may calcify, or may not. This imply means that your chances of stretching or resolving the plaque (scarring) on your own will become less. If the deformity/pain is tolerable then you might need to do anything further. IF you need the plaque/scar treated in some way, my understanding is that once/if it calcifies then the only way to remove it is via surgery.
Les
Except that there is the Lue case study demonstrating that Pentoxifylline CAN dissolve calcifications.
Quote from: George999 on January 07, 2011, 11:16:02 AM
Except that there is the Lue case study demonstrating that Pentoxifylline CAN dissolve calcifications.
Was that the study of the guy who was on it for 2 years? I'm just trying to think of which study that was... that's really good news! I didn't realize anyone could reverse calcification.
Mike, The study in question is here -> https://www.peyroniesforum.net/index.php/topic,772.0.html (https://www.peyroniesforum.net/index.php/topic,772.0.html)
And, yes, the treatment period was 2 years. It does demonstrate that at least in some cases, Pentoxifylline alone can resolve or at least reduce calcifications and thus does prove that with the right tools, calcifications and plaques can be reduced or even eliminated. Its all a matter of throwing the metabolic processes that caused the problem in the first place into reverse. I believe that means zeroing out inflammation. Pentoxifylline helps to achieve that as does Ubiquinol. Additionally, pro inflammatory factors like excessive visceral fat, insulin, blood sugar and factors like heavy metal poisoning need to be controlled. IF a person can get a handle on all of those factors, I believe some pretty amazing things are possible. But many people would rather just have surgery and get it over with. Its a personal choice as to how to deal with health issues.
Hey all,
I've been blessed with Peyronies for 2 years now. I've found the best treatment is distance running, multi-vitamins, and L-Arginine a few times a week. This helps foster a healthy vascular system which is about all we can do.
I have a question for long term sufferers......how does the scar tissue affect the penis over the course of many years? I can live with my curve (the hardest thing for me to deal with is the large amount of scar tissue in my member....I'm so paranoid about the what the future holds). If it hasn't gotten worse in 2 years...can I rest assured it won't one day make a right angle? The majority of the scar tissue is at the head and it also runs 3/4'th of the flaccid length on top.
It would mean alot to hear from someone who has had considerable scar tissue for 10, 20 years and hasn't had their penis continue to deform.
Youngone:
Please delete some of your private messages. Your inbox is showing full and refuses to accept the ones I try to send to you. I can not give you the information you requested until you have your inbox down where it will be open, etc.
Old Man.
YoungOne - while there are people who have had longterm Peyronies Disease with relative stability, their story might not be your story. I was fairly stable for the first few years after diagnosis, then things changed.
The important thing is that you need to deal with whatever the Peyronies Disease is presenting for you - do what you can as prevention or to slow things down, but you can't know from another person's experience what your particular situation will hold. From what I read on the forums, being proactive is a good thing. It looks like it might be easier to stop Peyronies Disease from progressing than it is to correct it once it has progressed.
Take heart. Many of the men in here have found solutions that worked for them at various points. You have access to lots of information and support in here.
Hi all,
I am 27 years old, and was clinically diagnosed with Peyronie's 5 months ago. It all first began a little over two years ago when I noticed a small pea-sized bump in the middle of the shaft on the top. There was no bend, no pain, and no issues. About 6 months after that initial bump, it seemed that initial bump had gone away and two other lumps formed (one on the right and one on the left side of the penis). I dismissed them because they did not hurt, or weren't growing, and didn't impact erections. That was until this past summer (about 1 and a half years into this process) where I noticed the lumps getting bigger and harder, and then eventually formed a slight curvature to the left, with an indentation at the right.
I am blessed to have a great wife who I can talk openly about this, but I am so worried about penile cancer because the lumps seem to keep growing. My physician looked me in the eye after a manual exam and said "you don't have cancer" but I keep reading on the internet about how certain cancers present similarly. Hence why I am very nervous because after just over two years from the initial noticing of the first lump, I feel like they are still growing.
It is normal for scar to grow even after the reported "18 month" period? Does anybody have scars that have increased in size beyond this period?
They often seem worse because I do self-examinations every day.
Any insights would be helpful as this is really messing with my mind!
Thanks.
Mercuza,
Go to a urologist and get a definitive diagnosis. Hand wringing and internet searches are not going to make you feel any better. My guess is that the uro visit will go something like this: "Unfortunately, you have Peyronie's. Congratulations, you don't have cancer."
Ask to get on Pentox, which in some cases has shrunk plaques.
Best,
Skjald
I agree with Skjald on this. 99.9999% this sounds like Peyronie's to me. Peyronie's is rare, but penile cancer presenting this way is so rare that it makes Peyronie's seem ubiquitous. So get a referral to a urologist for a second opinion and don't worry about it for now. The best idea would be to post on the urologists and other doctors topic and in the post let us know where you are located. Then perhaps someone here can point you to a Peyronie's specialist in your general area who prescribes Pentox and you can not only get a firm diagnosis, but also a script for Pentox and start shrinking the things rather than growing them. CoQ10/Ubiquinol is also helpful as is VED treatment and several other approaches all documented here on this amazing website. - George
Thanks so much for the encouraging words. I am going to take your advice and post to see if anyone has any recommendations of urologists in my area.
This disease just really messes with my mind, and I go through a good couple of weeks, then a bad couple of weeks. It just compounds any "normal" stress already going in my life. It took me a year and a half to even bring it up to my doctor so I guess I need to start being more proactive rather than playing out every possible scenario in my head.
I am really glad I found this site, I appreciate your responses and help.
Hang on in there mercurza. When you start on treatments like those mentioned below, you will at least be in the knowledge that you're doing all you can to help yourself!
I am coming up on my four year mark with having Peyronies. I developed it in July 2007. I first noticed the shrinkage effect taking place in March of 2009 right after my 8th set of VI injections. The shrinkage started with length first 1/4 to 1/2 inch over a few weeks. Then after a little time I noticed girth changing too. The girth has been shrinking on the average of every four to six months. I ve just noticed a considerable difference about 6 days ago.
My bends and curves have pretty much stayed at the same angles. I was wondering if any of you guys have had this experience or something like it dealing with shrinkage with the condition long term. It seems like in my case it never stops. My penis is just slowly shrinking into a fraction of its original self. They define stable as the condition gets no worse and stays the same. My curves and bends are the same but whats left is progressively shrinking. So I don't really know for sure if that's true stability. I do know that scar tissue shrinks but how long is mostly normal. I know theres no normals or straight ansewers with Peyronies Disease but this is been going on for four years my condition has never stayed the same and not gotten slowly slowly worse.
Also something that might tie into it. I had long term pain from this condition for the whole time I ve had it. I ve tryed many things to try to deal with the pain right now I am taking Celebrex with the rest of my supplements to try and help with the pain and or inflammation.
Woodman
My peyronies started in 1995 and by the time I had my implant in 2008 I had lost 1.5 inches in length and a lot of girth also.
In my case most of the shrinkage was within the first 2 years. Then as the ED progressed I lost even more.
The best thing I know to help stop the shrinkage and help restore some of the loss is the daily VED exercise. It takes time to show progress but it did help me regains back some of the loss.
Jackp
http://jackp-penileimplant.blogspot.com/
It's a real shame that you had a negative mental reaction to pentox. I wonder if that would've made a difference. I think quite a few others have been in a similiar situation to you regarding your condition. The idea that everyone enters there clear cut stages of worsening, then stabalisation doesn't appear to ring true. Well, rather for many/most it probably does, but there are certainly many cases that fall outside of that model.
I know that I was in the continual deterioration mode over a period of years. I was only able to turn it around with Pentox. ALC was fairly good at stopping it, but only Pentox was able to slightly reverse it. All that got even better with the addition of Ubiquinol and now I am in a mode of continual improvement rather than continual deterioration in length and girth, mainly girth. The only other treatment that seems to address this issue would be the VED. It seems like a lot of guys around here have maintained size with the VED. - George
George how much pentox do you take? if i take 400 3 times a day it really screws up my sleep, regardless of when i take it or how much food i eat. i cant manage to take 2 a day but that's not a great situation either.
how long did you notice it took till your size came back? are you doing the ved too? i have had a lot of size loss...in just the last year alone it has been horrible.
it is a shame nobody will inject superoxide dismutase because that has proven helpful in a lot of fibrosis research. i dont understand why that product is just not available... a compounding pharmacist can make it into a cream, but injections would be better.. and it's local.. no side effects... and actually works (unlike verapamil). I think a compounding pharmacist could make an injection too - but he needs an order from the doctor for specific units / grams / ml etc... there is CLEAR literature on this but the urologists seem clueless and /or completely unwilling to try it.
Mike, I take 400mg 3X per day with meals. I try to never take the last dose of the day after 6 PM. Size issues began to gradually resolve after starting Pentoxifylline only to regress when I temporarily stopped taking it. Once I added Ubiquinol 3X 100mg per day with meals, resolution in size issues accelerated. Sleep and digestive system problems resolved with Low Dose Naltrexone. Vitamin D has also helped me greatly with general health issues like this.
I hadn't heard about SOD, but I think it is an interesting concept. It is so hard to find physicians willing to try stuff even though the stuff to be tried is totally safe and potentially effective. At this point I am fortunate to have such a physician and that has been a great help to me.
- George
(I am not using VED)
Mike
I to have gone a time without pentox and noticed shrinkage.When I started back it took a while 3x400 mgs a day and 3x 100 mgs with ubiquinol and things are looking more relaxed , length and girth much better.It has made a big difference know, no more tight looking penis.My cocktail also includes cialis I think all three help to give the penis a more natural look. A long with the use of the ved that I need to get back to doing everyday.
Fubar
I also had the same sleeping side effects with pentox when I first started. After the first month though, any side effects gradually wore off, and now I can take it at 8pm and still fall asleep by midnight. It just takes time for your body to get used to it. I also used to exercise in the morning, and now I do it at night which helps me sleep a lot better. A good side effect is that it has really helped me with my weightlifting. Pentox was originally designed to get better bloodflow to the lower extremities, and I've noticed much less fatigue when I squat and leg press.
Why is it that when someone goes off of pentox, they see a reversal in their improvement? If that's the case I don't think it's a problem if you take it for a long time. From what I've read, you can take it virtually indefinitely without problems, the problem is just finding a doc to prescribe it that long. Even if someone is lucky enough to have an up to date doctor who prescribes it, I don't know if they'll prescribe it forever.
I am currently taking Co Q-10 100mg 3 x day, ALC 500mg 3 x day, L-Arginine 500mg in the morning and evening and 1000mg at lunch. I was taking 1000mg 3 x day but had to cut back because when I was just sitting I could feel my heart beating in my chest. Also taking Celebrex 200mg 1 x day. Sometimes I have to skip a does or two when my stomachs acting up.
I ve tryed taking Pentox starting in 2008 three separate occasions and had side effects as Newguy mentioned. I am trying to get up enough courage to try one more time maybe 2 pills a day in the morning and evening but Iam afraid of its effects. I am under a lot of stress with family and only working part time etc. The only things I can come up that mite be different is I now have experience with its effects on me and maybe just taking two pills a day spread out could help with less dosing over a longer period of time.
I ve tryed the VED numerous times and as of date I just can't get it to work out. My last attempt I really thought it was gonna work out for the long run once I added in the Co Q-10. I don't know if its just my particular case and/or because I just have had long term pain since day one with the condition that I constantly struggle with till today. Its so perplexing to me I wished I knew if it was just my particular case or I am just doing something wrong. I even bought the Fastsize traction device after talking to Dr. Levine thinking maybe using traction VS vacuum might make a difference. Shortly after starting the traction I hurt one of my plaques. It hurt pretty bad for a while then it let up after taking Celebrex for about a month. Its been a year and I still have pain from that spot before the traction I didn't have much of a pain problem from that plaque at all. I know it sounds like I am all thumbs......but ironically enough I make a living doing mechanical carpentry repairs etc.
I understand the basics about the scar tissue maturing then it contracts leading to shrinkage but can someone explain to me why it continually keeps shrinking and shrinking over a very long period of time? It just seems you would have X amount of scar tissue and according to X amounts size and density it would only shrink so much then hit a stopping point. I know that Peyronies and logic really don't mix ??? so hopefully you guys can explain it to me.
George999 if you do not mind me asking why don't you use the VED? Whats your thoughts and/or opinions about it?
Thanks everyone for all your input. If my post comes across a little grindy I apologize I think this roller coaster they call Peyronie's is really starting to weigh heavy on me once again.
Regarding the VED. I certainly have nothing against VED use and haven't ruled it out in the future. At this point I am doing so well without it that I really don't see the need for it in my case. Certainly I consider the VED one of the top two treatments around here in terms of effectiveness. But everyone has to do what works for them and Pentox alone supported by Ubiquinol is really doing the job for me. - George
Reading about this disease I am getting mixed messages.
I hear that many urologists will suggest a wait and see attitude. Implying that whatever course this diseasse takes, it takes, nothing can be done to mitigate it. Once stabilzed, evaluate the level of hardship (no pun intended), then deal with it then.
I also hear (or summize when reading between the lines) that the final result that this course takes as it progresses can be mitigated, implying that the final negative results can be minimized.
If the later is true then it would seem the fromer is almost criminal. At the very least horribly negligent.
It seems the odds are that the former scenario is much more common, which implies I am almost certain to face it. I intent to bring this up next week at my (way over due) yearly physical. I am not even seeing my PC, I am seeing a nurse practitioner. Believe it or not the earliest appointment I could get to get a physical with my PC is 9 months down the road. Howz that for nuts? And I (supposedly) have top of the line health insurance.
Sorry for being long winded here. This all boils down to a question. Are there any statistics on how often this disease progresses beyond it's intial onset?
My situation is, a period (a month perhaps) of pain (only when 100% erect), which boild down to only a few occasions, followed by a seeming instantaneous bend (upward). At this point in time the bend will not interfere with normal relations.
Should I expect this to get worse?
What are the odds it has already stabilized?
How many men have an initial onset of this disease, go through a period of being depressed over it, then just move on with it never getting any
worse or any better?
And, how do we know with a reasonable degree of certainty, we are stabilized?
I'm wondering if there have been many men who had an onset of this disease, never reseached it, never mentioned it to thier doctor, and simply moved on with life with a "bent" erection not thinking much about it (assuming the bend was say 30 degrees or less (or whatever is managable).
There are no simple answers to the question of "what happens from here" because there are no real statistics and it would be nearly impossible to compile them since a lot of guys probably never speak up about it. Thus there are a lot of unknowns. Doctors will insist that "most of the time" patients "recover on their own", but they have no real statistics to back that statement up. Its just sort of a religious belief with doctors. Around here most of us believe that patients almost never get better spontaneously, but that is only because we rarely see it happen with those posting here. But it could be that those who get better just stop posting and go away quietly. Who knows?
The reality is that there are effective treatments for Peyronie's Disease. The reason you never hear of them from a primary practitioner is that most docs treat with drugs promoted by the pharmaceutical industry. At this point the pharmaceutical industry has not been able to come up with a treatment that is effective and makes them lots of money. And if big pharma is not *promoting* a treatment and hasn't spent millions of dollars getting a treatment FDA approved, you *won't* hear about it from your doctor. So the *only* way you get access to effective Peyronie's treatments is from doctors actively involved in non-pharma sponsored research. Typically, in the case of Peyronie's, that would be Sexual Medicine or Peyronie's specialists at large medical centers. The treatments in question, however, are so effective that a growing number of urologists across the country are learning about them and prescribing them for their patients.
The same is true of the VED. At this point there is simply not enough money in the VED market to justify manufacturers spending a lot of time getting their devices approved for Peyronie's, although I believe in the case of the VED, at least one manufacturer has. But they are not promoted by the medical device industry for Peyronie's, thus front line doctors don't prescribe their use.
As to what is and is not offered to Peyronie's patients, just like everything else in medicine, its more about money than it is about the patient's welfare. That is the bottom line and that is why the patient has to be proactive with everything medical in order to get quality care.
This may be unwelcome news, but it's my experience: I've had Peyronies Disease since May of '10. I've been taking most of the therapies recommended (or partially so) on this site--ALC, L-Arginine, Vit E, Ubiquinol, pentox. I even take 12 G of Paba a day (over the counter supplement since the potaba was so expensive). I've taken enzymes like Bromelaine. I use Advil for headaches. I use a VED. I had 1 round (6 treatments ) the verapamil shots. I've taken SAM-e partly for mental health, partly wondering if it would help the Peyronies Disease. Basically the disease has progressed fairly steadily. I seem to go through 1-2 month cycles of having pain and inflammation followed by growth of the plaques, then periods of less pain. I still can't figure out a pattern to any of it. Even my doctor said that the plaque growth in my case was faster than most, so maybe I'm more of outside the norm. It has been a terribly stressful year, so maybe that's a factor. I wish it were as easy to just stop being stressed as it is to take all these pills. The plaque growth seemed the slowest during the verapamil shots, but who knows if they hurt or helped. I hated getting them, but I'm tempted to try again to see. (Also I was disqualified for the Xiaflex study because I'd been on the pentox and other medications.)
FYI--I still have an active sex life, but it's had to change. I've had no ED. The curvature has stayed fairly steady at about 80 degrees for 5-6 months, even though the plaques seem to keep growing. I'm not sure why.
So I can see why some doctors take a leave it alone approach--maybe there are enough people like me. But I think they lack a fundamental human understanding that it's bad for the mind to just do nothing. Trying something is part of maintaining mental health. But I can see why it would be questionable to encourage therapies you don't believe will make a difference. That was the agreement I came to with my doctor--he would prescribe things like pentox, but mainly I was doing these things for myself. So I say try. Be at least a bit scientific about it. And if something works let us know.
KAC, All of the proven oral treatments for Peyronie's are anti-inflammatories because Peyronie's is an inflammatory syndrome. Whether they work or not has a lot to do with whether the inflammation in one's body is great enough to overpower them. For most guys here, they DO work to varying degrees, but they don't always work. For a doctor to say that I am not going to treat this disease because it may not respond to treatment is just wrong. Its like telling someone with an acute infection that they are not going to get an antibiotic because the infection might be resistant. What kind of logic it that? I don't think your case is typical at all. Something is causing inflammation to be so aggressive in your case that nothing seems able to stop it. But that is not untypical in the larger sense. There are many diseases around where not all patients treated recover. That doesn't mean we declare the meds ineffective, it just means that we recognize that even the best medicine doesn't always work in every case. - George
George,
Hey, I'm not disagreeing with you--though if what you're saying is true, it suggests that I would be way worse off if I weren't doing anything. I just don't have genuine evidence either way. I may never know. I had several doctors--including a good friend--give me the "don't do anything" line first. I had to seek out a uro to prescribe pentox. Supposedly, I'm his only patient using it. I'm trying to balance hope and experience the best I can--and the best way I know to do that is to try whatever I have the energy, time, and money to try, but also state my experience as objectively as I know how. This thing may turn around yet. If someone else offers a plausible suggestion, I'll probably try it. But my own experience at least helps me realize why some doctors say to do nothing--they probably feel like it's an ethical position to not endorse therapies that they believe don't have enough science behind them. I've had my share of anger at doctors. But I also worry some about taking all these pills--I have a number of doctors in my own family and I haven't told them I'm taking them because I know they might really question whether I'm damaging my health. I try to buy high quality supplements--but who is monitoring what they put in there? (The PABA especially I wonder about--it's made by Country Life--a time release... why don't other companies make it? who holds them accountable when they essentially have a monopoly?) I now see a naturopath/md as well; he at least is pro-supplement and approaches medicine as a partnership. Still his main advice was to take 3000 iu's of Vitamin E per day. Clearly people on this forum question that advice. I looked up studies that suggested 3000 was dangerous.
But don't give me a hard time. We're all in this together and doing our best. I take ubiquinol 3x a day because of your advice--and I plan to continue. I'm reluctant to go off the pentox even for a couple weeks to see if there's a difference. Still, I need to maintain my honesty about my experience whether it is typical or not. How else do any of us know what it typical?
KAC, What is really important when taking that much Vitamin E is to take some Vitamin K2 as well. One of the worst side effects of lots of Vitamin E is that it depletes Vitamin K. Good you have someone (especially an MD) with some Naturopathic expertise as well. - George
I was just diagnosed with Peyronies two days ago. I had some pain for two months, so I guess I have been in the acute phase for that long.
Right now, there is not any real visual evidence of Peyronies, either flaccid or with an erection. But you can feel (not see) two small bumps on either side of the penis near the base if you push and know where to. I am seeing a Peyronies specialist in a couple weeks, so I feel good about my doctor options.
My question to those on the board and I know it's probably a big hypothetical, but I know people on here have a lot more experience in dealing with this than I do.....how much worse can it get from a visual/curvature perspective?
Does what I see now two months into the disease have any bearing on what I should expect to see worsen (or not) as the acute phase continues?
I can live with the pain and limitations physically, but being 43.....I am just dreading the worsening of this illness in terms of physical appearance and penis shape. I am trying to stay positive, but this news has been really tough.
Any insight based on knowledge and experience is greatly appreciated!....Thanks.
charlie44,
I got this at age 29 (now 32) and I have a mild case. After a very minor injury during sex I had some pain along with some hourglassing deformity. The pain went away while using pentoxyfylline and since stopping pentox over a year ago I have not had any further progression. In fact, the hourglass deformity has lessened somewhat and some of the erect length I lost has come back. Appearance-wise I am not the same as I was before however, because I still have some minor curvature and loss of girth. It's not a big deal though because my erectile functioning is just as good as it was in my early twenties and I am in very good health otherwise. Peyronie's is like a sports injury, every once in a while I remember I have it and take care in not making it worse.
As far as progression goes, getting on pentox and taking good care of your overall health are the best things you can do. It's hard to predict what this disease will do and every case is different. I do want to emphasize though that this is not the end of the world. Even if it does get worse, there are treatments you can try and surgeries available in worst-case scenarios. There are some very experienced and knowledgeable people on this forum who can help answer any questions you might have. Feel free to PM me if you have any specific questions.
Best of luck,
Skjald
Skaldborg,
Thanks very much for your post. It was very helpful. I live in a metro area of over 1 million people, so we have some good urologists. I went to a highly rated one and he told me "take vitamin E and come back in 6 months". I did some checking and there is a Urologist who specializes in Peyronies nearby, and I am going to see him in 2-3 weeks. As you mentioned, I am going to ask about Pentox.
I am in my early 40's and in good shape and take care of myself. I can deal with the pain and everything as it is now. I just want to get the best medical advice and treatment and I will do all I can on my end to manage this and limit progression. As you say, it's hard to predict, but like anything, I feel if I do all I can, you can't ask for anything more.
Thanks again, your post helped keep my attitude positive!
Being diagnosed with peyronies always hits hard. I had it at the age of 28 and it went pretty much as with Skaldborg hereunder. In the end its never to sure where it ends, really. I had some rude progression of the disease going for a 50 degrees sideways angle but somehow, that has become undone over the duration of 3 years. I have lost some girth though, but I dont think thats the end of the world. That felt a lot different 2 years ago but Ive learned the disease can also better itself.
I also think that, accepting the fact that your penis is in a state of inflammation and you should avoid putting too much strain on it and take good care of it, and not constantly proving to yourself its still fine and definitely dont touch it all the time, could prevent more dmg from happening.
@charlie44: you have 44 years, you are young, but there are people much younger than you that have peyronie...(i have 28 years). So don't despair.
Drugs that are most effective are:
pentox,
coq10,
carnitine.
Vit E is not useful.
L-Arginina e Propionil Carnitina togheter improve a lot the erectil function.
Estensor is useful and also VED, but in the acute phase you must be CAREFUL to respect your body's signs.
Pain = stop.
Guys....thanks for the feedback.
Diopor...I hear you. I feel bad for guys who get this younger than me, and even worse are single. I would have been single at age 28, and it would have been very hard to deal with then. I am married now, and my wife is supportive and we'll work through this. Having to deal with it being single would have been very tough, and I have real empathy for anyone who is going through this at that stage in their life.
I am on the same page when you say "pain = stop"....My doctor told me to take 2-3 motrin an hour before sex so you the pain would be dulled. Of course I have not done that. Like you, I was assuming pain is your bodies way of telling you something is wrong.
I am going to see a Peyronies specialist in 2-3 weeks, and until he tells me what is and is not ok to do, I will definitely be careful not to hurt myself anymore. I will definitely bring up Pentox if he does not.
My current URO did say to get an erection every couple days to stretch the penis and help prevent further degradation. He was clear in saying you don't have to have sex or climax, etc....just get an erection so you are stretching/using, etc....and I definitely see the logic in that advice.
I have not had a problem getting an erection, but keeping it is harder. I think part of that is mental....you know how it is...once you are diagnosed with something, it affects your mental state, and accordingly your physical one.
Again, I greatly appreciate the advice, and welcome anymore. I will let everyone know what the specialist has to say as well.
...ps...Thanks to Fubar as well who emailed me some advice.
Quote from: charlie44 on July 02, 2011, 03:25:55 PM
Guys....thanks for the feedback.
Diopor...I hear you. I feel bad for guys who get this younger than me, and even worse are single. I would have been single at age 28, and it would have been very hard to deal with then. I am married now, and my wife is supportive and we'll work through this. Having to deal with it being single would have been very tough, and I have real empathy for anyone who is going through this at that stage in their life.
I am on the same page when you say "pain = stop"....My doctor told me to take 2-3 motrin an hour before sex so you the pain would be dulled. Of course I have not done that. Like you, I was assuming pain is your bodies way of telling you something is wrong.
I am going to see a Peyronies specialist in 2-3 weeks, and until he tells me what is and is not ok to do, I will definitely be careful not to hurt myself anymore. I will definitely bring up Pentox if he does not.
My current URO did say to get an erection every couple days to stretch the penis and help prevent further degradation. He was clear in saying you don't have to have sex or climax, etc....just get an erection so you are stretching/using, etc....and I definitely see the logic in that advice.
I have not had a problem getting an erection, but keeping it is harder. I think part of that is mental....you know how it is...once you are diagnosed with something, it affects your mental state, and accordingly your physical one.
Again, I greatly appreciate the advice, and welcome anymore. I will let everyone know what the specialist has to say as well.
...ps...Thanks to Fubar as well who emailed me some advice.
For the erection, as supplements you can assume L-Arginine and Propionil Carnitine.
2-3g of L-Arginina, 2-3g of Propionil Carnitina, every day.
Justmyopiontoday
Not much help .look into other therapy and or suppliments ( ie cialis, pentox).The ved can work miracles.
How long does the acute phase last?
What is your experience?
I have peyronie since 8 months and disease goes on in spite of drugs.
My girth is worsening day by day...
So is mine. The urologist I last saw several weeks ago did not say I was in the acute phase, but I must be because the plaques are getting larger and harder. I first felt pain about two months before the plaque started to appear. That was almost six months ago. I have often read about a trauma phase, but I recall no injury. I don't think medical science has really honed in on all the factors, but it appears that it can take anywhere from a few months to maybe a year. It is maddening, that's for sure! Perhaps some of the long-standing members here can add some information. Good luck.
I never felt lumps or scar tissue until a month ago.I had the deformity at the beginning onset. Not much pain started on pentox and cialis as soon as I could.Started using the vitality ved as soon as I got it.Had to stop the ved therapy for a while because of other physical problems.Had my eye on a traction device and bought one.I have used it aggressively and moderately and want to use them both In therapy but have not so yet.
It is hard to say how long the acute stage last.I personally think therapy and pentox keeps keeps the scar tissue young giving you a chance to correct the damage.Once calcified could make the damage little harder to manipulate to you favor.
Just my perspective through the positive results I have had.More pentox and cialis on its way!
Fubar
My peyronies started in April as pain made me aware of something going on....by the time I could see the Urologist in August, I had small lumps of plaque on each side of my penis, but the pain was gone. The urologist said the pain is caused during inflammation which is the scarring occurring. I was hoping since the pain was over, it would not progress (on Pentox since doctors visit). Last week the pain came back (night erections wake me up), and sure enough, I now have a new dime size plaque lump the right side worsening my hour glassing.
I assume this cycle of no progession, than progression, can continue back and forth till finally out of the acute phase?
Peyronie is an hard work of mind and patience.
Whit Peyronie we are forced to face the our deepest fears.
I'm 28 years, i have it since 8 months.
Every day is a day of work for my mind.
There are not guarantees, there are not assistances.
There is only your power of soul.
And it can't not to be around.
Yep, I seem to be on the inflammation teeter tooter. The pain with flare up for awhile then calm right down to nothing and cycle like that. I guess it shows how on the edge my injury is all the time. All depends on how much sex or other factors that tip the scale from one side to the other. I'd love to find that magic bullet to put a stop to this madness.
Quote from: crashbandit on September 27, 2011, 12:40:44 AM
. I'd love to find that magic bullet to put a stop to this madness.
Wouldn't we all!!
How fast can Peyronie's or the ED associated with it worsen?
Mine took about 5 months to get really severe. At first it started as a slight indentation but then as it progressed the area got more and more contracted to the point that it's now quite obvious and hard.
If you are newly diagnosed MAKE SURE you go to a Urologist. If it's Peyronies (and only a urologist can know for sure) Pentox has a 50% change of helping you not progress.
Likewise be careful to not injure yourself - if you have any pain whatsoever stop having sex. That's my opinion that some others don't agree with but it makes sense to me.
How much did your acute phase last?
My acute phase lasted 5 to 6 months
James
It's hard to put a timeframe on it because it differs from person to person.
My was a very slow ordeal. It took 24 (or maybe 26)months to get from a very small dent on the base of my penis that made my penis to get to the left, a very little bit, than the bent to left worsened very slowly with the plaque growth.
A banana shape up developed also very slowly, the banana shape is done by a cord like plaque from the base of my penis up to the glans.
Finally, on the middle of the shaft on the right side two small hourglassing developed from month 16 to month 26.
The ED developed also very slowly. When the Peyronie's stabilised, the ED stabilised also. The ED don't get worst from this point.
I had never experienced pain so I can't advice in the subject, but my private opinion to stop sex is not a good thing. To be carefull during sex yes, but not to stop.
I have to say that regarding sex I may be wrong and 0x555 may be right.
Before going to a uro, make sure he is a good Peyronie's expert and not just a regular uro. But also a regular uro if you don't find a Peyronie's expert in your area can make an ultrasound and see if you have plaques or not.
James
Unfortunately for me, the acute stage of my Peyronies is back. :(
The first acute stage lasted 24 (maybe 30) months
Stable stage to month 30
Again acute stage with worsening curve up and worsening ED from month 36 (now at 42 months)
James
Quote from: james1947 on July 16, 2012, 03:59:36 PM
Unfortunately for me, the acute stage of my Peyronies is back. :(
The first acute stage lasted 24 (maybe 30) months
Stable stage to month 30
Again acute stage with worsening curve up and worsening ED from month 36 (now at 42 months)
James
As i said, there are no treatments for this disease for the first 4-5 years.
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?
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.
Sorry but I disagree. There ARE thinks you can do during the acute stage. Using a VED or traction can prove effective in retarding or reducing the amount of change or deformity during the acute period. And the acute period is normally more along the range of 12-18 months. Yes there are exceptions and some on the forum have experienced acute phases longer than this. But I don't think it is fair to say nothing can be done for the first 4-50 years.
Les
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
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.
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.
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
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.
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
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 (http://www.itmonline.org/arts/italy.htm)
Here is a list of acupuncturists in Italy: http://www.agopuntura-fisa.it/mediciAgopuntori.page (http://www.agopuntura-fisa.it/mediciAgopuntori.page)
Here is another: http://www.sia-mtc.it/agopuntore.asp (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.
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.
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 (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 (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.
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
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.
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
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
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
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
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
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.
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
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.
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
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...
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
What are the things you recommend from the outset?
Thanks!
<Full quote removed by Admin>
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.
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.
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
Mentos
I know you asked George but in mean time I would recommend Pentox, low dose Cialis, CoQ10/Ubiquinol and VED.
James
on all of em buddy. thanks
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.
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
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
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.
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
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
if you dont mind me asking are you able to have sex with the pain?
bigfish
Are you following the Priapus/PRP shots topics?
It may be interesting to know if it helped with pain also.
James
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
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
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.