Hello everyone I'm new to this site. I came to this site because I have no way venting my problems with peyronies disease which I think I have. I am 23 years old and I believe I have peyronies disease but I believe Ive had this since 20. Ive been to 2 urologist and the same one twice. The first urologist I went too she said it was all in my head and I'm not thinking right. She checked around gave me Viagra which didn't work and sent me to a vascular laboratory which came out good except for penile brachial indices are within limits however it is noted that there are slightly increased which would be in keeping with possible medial wall calcification of the penile vessels. Which calcification in the penis like lumps is going towards peyronies disease. Well anyways I went back to see her and all she asked me is if I had diabetes and I said no.. then she said the same thing I cant help you your not thinking right so she sent me to see another urologist and she said hes the "go to guy" if he cant find nothing wrong then I dont know. So I went to go and see him and I told him about the bend and how it goes downwards sometimes which is another thing that's got me puzzled sometimes my penis is perfectly straight and then sometimes it goes downwards not as straight and I get very painful erections most of the time. But anyways got off track the second urologist the guy told me its probably peyronies disease so he wanted me to take pictures. So I took some pictures and went back and he said that its straight and that I should stop worrying about it and just get into a relationship. Then I told him I get different erections which I do sometimes its straighter then other times and that I still get painful erections. He told me its impossible to get different erections. So we left it at that. Also when I did try sex when the female was on top it hurt alot. So I went to my family doctor told him the whole story so he gave me some levitra 100mg and it did nothing for me it actually makes it worst. But he made me another appointment with another urologist I'm so fed up and I got to go see another one now :(. I also can feel a lump on the left side of my penis and underneath It feels like they connect and I still get painful erections and I am having alot of trouble reaching orgasm it takes me forever its so frustrating. I also dont want to try sex again because it hurts and if I go limp its really humiliating and frustrating and it really bugs me I'm only 23 and I cant even have a girlfriend or sexual relations. If anyone can help me and give me tips it would be much appreciated.
Noway - I think you need to provide the urologist with as much information as possible at every stage. That way it will stop a lot of this back and forth. If your erection is different some days than others, then take pictures of it then too. At least that way the urologist will be able to offer a very clear opinion on whether there is an issue or not relating to curvature.
The pain you are experiencing does suggest that something unusual is going on here. Maybe you can go to see one of the more respected peyronie's doctors and see when he thinks..
New guy very good advice when I go see the next urologist I will take pictures when its good and bad and see what he sais. I still have the reading on the vascular lab. I have been living with this so long its so frustrating.
Yes, many of us here have been living with peyronie's for a long time. It can be very dispiriting at times, but we have had some success stories and there are therapies here that may be of benefit to you if you are suffering from peyronie's.
Newguy what are some of the therapies for peyronies disease?
Quote from: Noway on July 19, 2009, 01:53:13 AM
Newguy what are some of the therapies for peyronies disease?
Noway,
Many therapies are posted on this site. I know it is frustrating but you need to read some of the threads as it is too difficult to to into all that detail here. You need to look into oral meds (like Pentoxifyline), and either traction or VED use. Traction and VED's are often marketed as penis lengthening devices, but many here have found them helpful for Peyronies therapy.
More aggressive therapies are Verapamil injections and ultimately surgery. But each person's situaiton is unique.
Les
Peyronies disease is worst then cancer. I dont care 23 without a penis thats working and I can get girls dont get me wrong. But peyronies disease is worst then cancer I literally cry myself to sleep....
The only resort is a damn surgery that gives you like some chance but then they shorten the side to equal the lesser of a side. Why cant they take the longer side and equal it too that. Its frustrating that this has to happen and that the public cant educate people enough to watch over your penis or your parents cant tell you things to watch out for. But people care more about damn planting trees and car accidents.
Like honestly "therapies" pills but it doesnt get rid of the plague the plague will be there they need a pill to deteriate the plague and the lumps for good. Like i said they care more about planting trees then a more serious problem like peyronies disease its like cancer in a sense and I think its worst. I bet if the president of the united states had peyronies disease he would find
a cure quickly.
Quote from: Noway on July 19, 2009, 12:55:50 AM
.... If anyone can help me and give me tips it would be much appreciated.
Noway,
You asked for some "tips" and a few members provided you with tips. With all due respect, you are not acting on this forum like you "appreciate" the tips.
I empathize with your fear, but in the words of another member, Tim, quit thinking so "black and white." Your venting includes several unfounded assertions. Keep in mind, thousands of others read this forum.
You need to get your head straight, and this forum can help you with that, I know from personal experience.
CF
Noway:
Welcome to the forum. As Cowboy says, get your facts and acts together. A lot of time and effort has been put into this forum to make it what it is today. So, ask and it shall be given - anyone here will bend over backwards to help you, just let us know what you need.
Now about the president having Peyronies Disease, yes, I personally know of at least one in the very near past, had Peyronies Disease and there was nothing that could be done for him. My personal uro was at one time his personal doctor at the Naval Hospital at Bethesda, MD. He related the president had a severe bend upwards past the 90 degree mark. Nothing seemed to help him.
You should take some action to as least try some of the things guys on this forum have and had some success. Read up on all the subjects that interest you the most and you will find a world of good information that just might lead you in the right direction.
Regards, Old Man
There was also testimony in the Bill Clinton debacle of a trial that he had Peyronie's Disease - well, that or a congenital curve. One of the women accusing him of philandering testified to the knowledge of his "bend" to prove that she had been intimate with him. Keep in mind, the President is just a man. Presidents have suffered from alzheimers, cancer, heart disease, etc.
As incredibly off-topic as it is, it's still interesting! Especially Old Man's anecdote. So when you think your life is over because of your Peyronies Disease, just think - a man with (probably) a much worse case of the disease managed to ascend to the highest office in the land!
Noway:
It appears to me that Peyronie's Disease is not your only problem. Your anger, hostility, and self-pity [crying yourself to sleep] are issues far more serious than a broke dick.
Every man that has Peyronies Disease will or will not get fixed. Simple as that. Spewing your venom all over this web site has no bearing on the success you may or may not achieve. You need to read and listen [take the cotton out of your ears and put it in your mouth] and just maybe you'll learn about our disease. No one asked for your negative thoughts or comments and they are darn sure not appreciated.
You may ask all the questions you want or you may make all the positve comments you want. You will even be encouraged to share
your successes [or failures] and you may have some good things to happen for you. However, pal, if you have Peyronie's Disease then
you are in for some real challenges and you need to shut up and listen, read and study for a long while.
I wish you the best and look forward to hearing about your success in the future. Meanwhile, count your blessings and find a way to make the best of a very, very trying situation.
Im going to see another urologist but he hasnt called yet its been about 2 months so I dont know when my appointment is.
Noway...I am going to guess that the "sgt" in "sgtnick" stands for sergeant!
But you know what? It's OK for you to be mad. But being mad or sad doesn't fix problems. Problems are meant to be solved, not to be the source of drinking, confusion, constant states of anger, etc.
Whether we gently nudge you towards taking care of yourself, or kick your butt that way, the trip you take is yours. Ultimately, it is your choice. Pain is not optional in life, but suffering is optional. My advice is to stop being so confused and start learning what is available to you. For instance, you said "Why cant they take the longer side and equal it too (sic) that?". Well, they can, and do. It's called grafting. The only problem is that grafts fail sometimes, and a penis that ends up scarred worse is no help to a man, whereas a functioning (but slightly shorter) penis is a help to him. This has been discussed on these boards here. Links to articles discussing these techniques are posted here. What I do not see from you is evidence that you are really doing your homework here, reading these articles and learning.
And FWIW, Peyronie's is NOT worse than cancer. We have men here who have had both and they can quickly set you straight on that account. Of course, if you took some time to read their already posted messages, you'd know that.
Tim
My scarring has calcified so does that mean medication and pills will not work? With surgery do they remove the lumps and scar tissue alltogether? Also my penis is really good sometimes but I cant ejaculate I try forever so do you think its peyronies disease causing that? If I masterbate for a long time I lose my erections.
Noway -
Pentox has been reported to reverse calcification in some patients. I also have a uro who gave me a topical ointment made of Acetyl-L-Carnitine and EDTA. The latter is a chelating agent, which means it removes heavy metals from the body. My uro thinks that this can help alleviate calcified plaque, or at least prevent it from worsening.
And we don't yet know how Xiaflex will affect calcified plaques. They aren't including them in the FDA testing, since they want to put forward the best results. It could be that Xiaflex works just as well in calcified plauques. We won't know until it hits the market, I guess.
Ocelot556 like I said Ive had peyronies disease for as long as I can remember and I think it just has come to a hault it doesnt get worse and its not getting better. I still experience alot of pain and a downward bend. I even have pain on left side of shaft when my penis is not erect. The urologist said that medication wouldnt do anything and everytime I went to see another urologist they make me wait forever. The first urologist I seen doesnt even want to see me anymore because she said its all in my head. When she made me go for tests it said right on the piece of paper that I have calcification lumps within the penile vessels. They dont seem to care and they do as little as possible to get me out of there office because im 23 years old and they believe this is impossible. Viage levitra do not work at all ive tried levitra 100 mg its no good. I find it makes it way worst after I use it like the next day. My penis is more messed up. The only thing my first uro said is if I had diabetes which I dont and she doesnt even take more tests or anything.
Quote from: ComeBacKid on July 23, 2009, 05:30:48 PM
I don't know why Dr. Levine seems to like the traction with verapamil injections, topical verapamil did nothing for me, and I've read no study to date yet that indicates verapamil helps peyronies in any way. If someone knows of a study please post it, I have not read it yet.
Comebackid
Levine takes a "3-pronged" approach. It isn't any one single thing, but the combination. The combination is 1. meds, 2. VI's, 3. Traction. He believes stretching the scar tissue while the Verapamil is working is best. He told me th wear the traction as much as I could following the VI's.
There is a study he did and it was availalbe on the internet. I think it has been posted here
Lesbefore.
How do you get ahold of this dr.levine
This is how you contact Dr. Levine http://www.urologyspecialists.net/appointments.html
Is dr.levine the best? or would it be a waste of time going to see him?
Im a canadian citizian if I went to go see dr.levine would I still have to pay when I go and see him or would I have to get a referral from my doctor and papers? Like would it transfer over to him?
Noway - I think you'll have to pay Levine if you're coming from out of the country. I think most US citizens with insurance have to pay him, as he's one of the countries foremost urologists and I believe his rates are higher than most. I'll defer to someone who may have actually SEEN him.
Quote from: Noway on July 24, 2009, 12:30:13 AM
Im a canadian citizian if I went to go see dr.levine would I still have to pay when I go and see him or would I have to get a referral from my doctor and papers? Like would it transfer over to him?
yeah, we're not covered if we leave the country.
if you're in southern ontario, get a referal to dr. brock in london -- he's apparently really highly regarded, I'm seeing him in sept myself.
however, expect a LONG wait (6 months) to see him.
Is that a six month wait to see him or any urologist? To be honest, I found no satisfaction in going to see Dr. Mullhall cause there is so little he had to offer except verapamil injections. If you can get a doctor to prescribe you pentox through someone you know I'd just get on that while your waiting. I know this is not easy for everyone unless you know the right people.. Also do you have the option of buying a private plan in southern ontario?
Comebackid
Quote from: ComeBacKid on July 24, 2009, 01:20:05 AM
Is that a six month wait to see him or any urologist? To be honest, I found no satisfaction in going to see Dr. Mullhall cause there is so little he had to offer except verapamil injections. If you can get a doctor to prescribe you pentox through someone you know I'd just get on that while your waiting. I know this is not easy for everyone unless you know the right people.. Also do you have the option of buying a private plan in southern ontario?
Comebackid
Just to see him, a urologist can take months, or days, depending on the doctor.
I originally was referred to a urologist, who I didn't know, is a expert on cancer. It took 5 days to see him.
You can buy into a private plan for health here, but it's still the same doctors, the same wait -- the only real benefits you would get is 100% dental, and 100% prescription (which most jobs will ofer a plan for anyway), and a private room if you're sick in a hospital.
Quote from: ocelot556 on July 24, 2009, 12:45:32 AM
Noway - I think you'll have to pay Levine if you're coming from out of the country. I think most US citizens with insurance have to pay him, as he's one of the countries foremost urologists and I believe his rates are higher than most. I'll defer to someone who may have actually SEEN him.
Ocelot556,
Why would you say you think he charges more if you haven't seen him? I go to Dr. Levine. He is a specialist and charges same as any other specialist. You also seldom have "just an appointment" with him. Mine was always in conjunction with an ultrasound, Verapamil Injection, etc. So these add to the cost of the "visit".
He also works through several insurance companies. I was fortunate in that he was "in network" for me.
Les
Hello,
I have read a ton of posts on this site already. Some where talking about herbal remedies, some successful, some not. I guess everybody's case is different so I am posting my own situation. About 3 years ago I was diagnosed with Peyronies Disease.
I was still able to have intercourse, I had no pain and not much of a curve, but more like an indentation on one side. It remains that way today.
My doctor said if I didn't have any discomfort, treatment was not needed.
Now, I am at the point where I cannot get a good enough erection for penetration, and the size has deminished. I tried Viagra but all I got was heart palpitations.
I do take high blood pressure and high cholesterol meds, so I am wondering if that is making things worse. My testosterone levels were all normal also.
Any input here would be greatly appreciated. I am 58 and my wife is 51 and neither of us are ready to give up our sex life. My doctor seems to really not care to treat this disease because he feels even herbal products could interact with my prescription meds.
Thanks!
Bluesman
The best advice I can give you to start with is go to the VED board and start the VED exercise. You want to keep your penis healthy and try to regain back some lost size.
The VED is very helpful but it takes some time to see results.
The only thing I will tell you is not to try the PGE1 or trimix shots in your penis for ED. In my case they caused more harm than good.
There is a ton a good information of this forum and a lot of men that will be glad to help.
Jackp
Bluesman:
I have written you a private message which you should read as soon as possible. Listen to what JackP is stating in his post below. Read his history and your will see that he had real good success with the VED therapy prior to his penile implant surgery (which I might add was a great success when all else failed to help him).
In addition, listen to him about not getting the penile injections as they can and will have very bad side effects from which recovery may never come. There were 12 of them injected in my penis and each and every one caused more trauma that took a year to resolve.
So, bottom line, do not wait any longer, decide on a course of action for some sort of therapy. Hesitating will only prolong your problem.
Old Man
PS: If you are not familiar on how to open your private messages, please post so we can assist you in receiving and reading them.
Thanks guys!
It's a real tough thing to go through....
I appreciate the replies and will go to the VED board and read as much as I can.
Thanks again!
Bluesman
I'm glad that your curve isn't all that bad. Shame about the ED though. The endgame of severe ED problems is an implant. I'd certain suggest that you try various oral combinations first though. You suggest that viagra didn't work, but how about Viagra alongside l-arginine and Pycnogenol .. You could add this combo too:
http://www.ncbi.nlm.nih.gov/pubmed/19494825
Stick with it for a couple of months and see what happens.
Also, as the guys below rightly state VED use could help to exercise your penis and promote erections.
Bluesman
Have you tried Cialis or Levitra? I'm on both Zestril for hypertension and Lipitor. All three of the ED drugs worked fine before I had to have PCA surgery for my prostate. Then the Peyronies showed up after the Edex and Trimix injections, but I disagree with some of the guys here as that being the cause. I was injecting too close to my body because my urologist never demonstrated the area to stay away from.
I also have a history of fibrosis disease in my immediate family which I think was a contributing factor to the Peyronies Disease. Currently I am doing the VED 26 week protocol and can notice a difference, besides continuing with Levitra. My noctural erections are normal, except for the curve.
Thanks for the further responses.
I do intend on trying some supplements, but before I do so, I really need to consult my DR. to make sure there would be no dangerous side effects with the lisinopril and zocor. I also take Hydrochlorothiazide (HCTZ) which is a water pill that also contributes to ED. I forgot to mention that.
In response to someone's question about Levitra and Cialis, no, I haven't tried those....I really don't know if that would help if Viagra didn't, but it is worth a try.
What about niacin and vitamin E for starters.
I have read in some places on the Internet that those two can break down the fibrosis, or whatever is causing the Peyronies Disease?
Thank you all for being patient with me.
P.S. - I am also considering the VED board as suggested earlier....
I just want what works :-)
Bluesman
I take lisinopril with HCTZ 20/25 or 25/20 dosage which caused me to go the ED Drug route. At first Viagra worked fine for me, but your body seems to get used to it after awhile and it doesn't work anymore. I would definitely try the smallest dose of either Cialis or Levitra. If those work, there are all sorts of solutions to the cost of either one. So keep posting and also try the VED.
Quote from: hb on October 05, 2009, 06:46:55 PM
Bluesman
I take lisinopril with HCTZ 20/25 or 25/20 dosage which caused me to go the ED Drug route. At first Viagra worked fine for me, but your body seems to get used to it after awhile and it doesn't work anymore. I would definitely try the smallest dose of either Cialis or Levitra. If those work, there are all sorts of solutions to the cost of either one. So keep posting and also try the VED.
OK - Thank you - will talk to Doc tomorrow and see what he thinks..
What upsets me most is that he doesn't seem to make a big deal over this.
It's like - Oh well - you are getting older - you take meds...this is the price you pay...
I live VERY rural and choice of Docs are scarce. I have the best Internist in the County....maybe I should ask him to refer me to a Uro man? I just don't know if my insurance covers it.
Have a good evening!
Quote from: hb on October 05, 2009, 06:46:55 PM
... At first Viagra worked fine for me, but your body seems to get used to it after awhile and it doesn't work anymore. ...
I don't think there is any research to support this assertion.
CF
Bluesmann
Talk to your doctor about switching off the HCTZ to Spironolactone 25mg. My doctor did several year ago. It is not as bad as HCTZ but any diuretic can cause us problems with ED. That helped me.
Jackp
Quote from: jackp on October 05, 2009, 11:06:40 PM
Bluesmann
Talk to your doctor about switching off the HCTZ to Spironolactone 25mg. My doctor did several year ago. It is not as bad as HCTZ but any diuretic can cause us problems with ED. That helped me.
Jackp
I will ask, but we just got my pressure under control, and I doubt he will switch off the hctz. I have to get more involved with him regarding the Peyronies Disease/ED. He is a new doc since I just moved here and he doesn't know much about me yet. I will work with him and this forum and see where we go. hctz may contribute to ED, but there has been considerable size change, and that is embarrassing me and making it unable to perform with my wife.
Thanks for the follow-ups!
Ok, I'll agree there is no research to support Viagra quitting after awhile. But it did happen to me and I have read of other cases on the Healing Well Prostate Cancer forum.
Currently, it does not work for me at all nor does Cialis, post PCA surgery with half my nerves removed. However, Levitra works ok but takes an hour to do it's thing. Both on-shore and off-shore versions have the same effect.
However, the Trimix works in 5 minutes
Bluesman
Unfortunately size loss is one of the side effects of peyronies. Before peyronies I was 5 1/2" about 18 months later I had lost 1 1/2". That was in 1995 back then the urologist had no clue what to do and this forum was not available.
After heart stents in 06 I asked my then urologist what could I do for sex. Because of my heart condition I had to wait another year before getting an implant. He wrote me a Rx for a VED and had the rep come to his office and fit it for me. It was a single cylinder model and the instructions were not very good and I proceeded to hurt myself.
After the failed implant attempt in 07 I found this forum and Old Man helped me get a exercise for the VED I had. I followed his advice and in about 3 months was starting to regain size. In the year I did the exercise I regained about 3/4" back. That exercise helped me have a better than expected outcome with my implant. The whole story is posted in My History the link is at the bottom of this post.
You must be proactive. Do the VED exercise, do not stop having sex with your wife you can find ways, try things like putting a pillow under her backside, toys, etc, what ever you as a couple are comfortable with. Just never - ever / never - ever /ever give up or stop trying.
A lot health issues took priority over me getting my implant. The 23rd of this month it will have been a year. I am blessed to have a wonderful wife of 41 years and have found the best implant surgeon in Dr. Milam at Vanderbilt.
If I can do it you can too. Good Luck.
Jackp
I was sent home from a rather uninterested Urologists's visit with a Peyronie's Disease diagnosis (made in about 3 seconds by the doc). A very expensive prescription of 2000 tabs of Potaba and vitamin E, and come back in a couple of months...
I'm 53 with early stage Peyronies Disease I believe with just minor pain during erection and little to no curvature resulting from a small mass. I've spent a few hours reading here and the amount of info is a bit overwhelming.....
My first searches on the web took me to the Peyronies page of the biomediclabs.com websitse
My question is: What should I make of this initially? ...... I've been very active with supplements and the bs of the industry since the early 80s.... I'm quite skeptical, but also a complete believer that well formulated supplements play a critical role in overall health and preventive medicine....
So very much of what I've read seems quite subjective.... a random technique here, another shot in the dark there....
If some of the more experienced members of the forum could try and serve me up an objective view of just what role the "Specialty Enzymes" might play in Peyronies Disease treatment I would be greatful.... I'm sure that as I read and learn more things will become somewhat more clear.... This is just my jumping off point....
Thanks,
Jack
That is exactly what my doctor put me on in 1995.
I have not tried Pentox but some here recommend it. I would go to the VED section and start the VED therapy, it will help keep your penis healthy and help keep you from loosing size.
Jackp
Parajack - Treatments that encourage erections, calm inflammatory processes and inhibit fibrosis have tend to be those recommended. That's the logic behind the prescribed treatments you are taking currently too.
A good starting point is the PAV cocktail (Pentoxifylline, l-Arginine, and Viagra). Some tops peyronie's urologists suggest this combo. I would add Pycnogenol because studies show that the synergy between L-arginine and pycnogenol is useful in promoting strong erections. Also Taurin (combined with niacin in some studies) are useful in combat various types of fibrosis.
There are a great many treatments that are potentially of use, but I'd go with the above if I was adverse to taking large numbers of supplements. Peyronie's disease studies are a bit thin on the ground, so the theory behind using some of these treatments is limited to animal models of peyronie's and/or their effectiveness in treating fibrosis in other areas of the body. The exception is with pentoxiflline which does appear to have some success in reducing peyronie's plaque in some individuals.
Thanks Newguy but let me reformulate my original question.... because of my inexperience with Peyronies and it's treatment, I haven't gathered the general knowledge base to be able to really know where to focus my efforts in terms of expanding the initial treatment prescribed by the Urologist I saw.... I'm sure I'll gain confidence here in short order but I'm initially still a bit stumped....
Is there general skepticism with supplements in general because of the reality that so many are scams and bs? In browsing today, I ran across this website: peyreton.com
"Peyreton is a definitive answer to Peyronie's Disease. The results are permanent and not only symptomatic. The treatment does need patience but not to an extent beyond normal ability. As a general rule, the most sever patients should see complete cure within three months of use. " So there you have it.... 90 days with a single pill a day and we'll all be cured....... I get the loud and clear msg here, but there are other sites which are far more intriguing and interesting to me....
Yesterday, I reviewed the fibromedica website and the Neprinol info. I also looked at the Biomediclabs labs again... So far, I haven't seen any real discussion on this... I saw someone else post a question about this same topic, but no replies...
"Neprinol® no longer includes the SEBkinase® blend that for the last 5 years made the Neprinol® enzyme blend such a success. "
Why does my early digging seem to reveal that there is little interest in this enzyme based therapy? Is it because the enzyme based products are grouped with vitamins and supplements in general, and that approaches with same are only marginally helpful in treatment? Is it because of the shear volumn of scams and useless stuff that's marauding around the web preying on Peyronies sufferers?
Jack
parajack - There is unfortunately no peyronie's quick fix, so supplements promising to be the "definitive answer to Peyronie's Disease" should be avoided. They have nothing to back up the "cure in three months" claim, primarily because that won't be what transpires. The peyreton.com site has testamonials going back to a time before the site was even registered. They feature "An in-house study by The Gordon's Herbal Research Center " which is listed here as a scam: http://onesickmother.typepad.com/my_weblog/2009/07/gordons-herbal-research-center-scam.html
Neprinol I believe is similiar to Fibroym, which I use. It may well contain some ingredients that are useful, but I personally would place it in the second or even third tier of the kind of treatments you should be looking at. There's not much buzz about them because people have moved on to other treatments such as the ones i mentioned previously. Pentox and so on.
Newguy,
thanks again for taking the time to reply.... I've just completed a multi-hour reading session and have found my way through many threads... things are starting to become just a bit more clear now....
It's quite possible that I am very early on in the active phase(age 53) but can't really know for absolute sure..... I've only had some very minor pain a few times during intercouse.... I have no bend that I am aware of. I do, however, clearly have a mass or inflamation of the erectile tissue on the top an inch or so below the head. This mass seems pliable and only exhibits mild discomfort when I manipulate it, etc... Cause is a big unknown, but I suppose could have been the result of some very aggressive sex a month / 6 weeks or so ago... certainly can't define or remember any specific action or event....
I'm sure you've had plenty of members of the forum chime in with early stage symptoms... In most cases I'm assuming that the disease progresses through a fairly predictable evolution (albeit with different variables for each person), and that I can look forward to bending, shortening, etc.. with calcification over time.....
<<A good starting point is the PAV cocktail (Pentoxifylline, l-Arginine, and Viagra). Some tops peyronie's urologists suggest this combo. I would add Pycnogenol because studies show that the synergy between L-arginine and pycnogenol is useful in promoting strong erections>>
I have no clue if my less than interested Urologist will prescribe the Pentox for me... - if he doesn't, what would be the best way to get a prescription and get started - sooner than later....
From what I've read on the Hyperthermia, the 60 member study and all, it seems targeted for those with advanced stage Peyronies Disease. Seems to me that it might very well be helpful at any stage of the progression... what do you think? I have a nice hottub which has seen very little use lately and we've even discussed selling it. Should I start daily 30 min soakings at 40 deg C?
I saw a link to a VED but can't remember where at this point.... Could you give me a link to a proper, medical grade unit that I can order without a prescription?
I have a sound supplement regime in place... I have 25 years of experience with Pycnogenol and only take a maint. dossage. I should probably work back up to a full saturation dossage, perhaps reducing some other antioxidants to keep things balanced.....
Goal for next week:
Get going on the PAV cocktail
Order a VED
Start Hyperthermia
Continue with a non synthetic E complex & increase the Pycnogenol dossage.
How am I doing so far? Any suggestions - Comments?
Thanks Again
Jack
It's positive that the pain isn't too bad, as some members struggle with pain for years, a state that doesn't even appear to be recognised by many urologists. Each persons condition appears to take its own path. For some men the whole process from pain (if present) to a stable condition is fast, and for others its a slow process. As every case is individual, it's really hard to say what the endpoint for you could be. What we can safely say tho, is that by using treatments mentioned on this board, you stand the best possible chance of a more positive end result.
Your plan to start using the VED really is the right way to go. A number of men here have had positive experiences with it, and I can only think that as you currently have no curvature, that its use may even benefit you more than most. I'd say that most men coming here already have some curvature, so again you're really getting on top of this at quite an early stage. As for the hottub, well it can't hurt and will get blood flowing s give it a go :).
As for pentox, well many men have persuaded their doctor to give it to them by taking these studies to them: https://www.peyroniesforum.net/index.php/topic,772.0.html so maybe that will sway him.
Quote from: parajack on October 18, 2009, 12:18:17 AM
I saw a link to a VED but can't remember where at this point.... Could you give me a link to a proper, medical grade unit that I can order without a prescription?
Parajack, this is the post you need from Old Man. This link will take you directly to the post in the VED forum.
https://www.peyroniesforum.net/index.php/topic,25.msg22719.html#msg22719
Here are other links - if they work.
Tim
Hand pump
http://secure.sciencecompany.com/Vacuum-Pump-with-Pressure-Gauge-P6489C692.aspx
Cylinders
http://www.bostonpump.com/
other examples are out there
Well I finally received my VED today after well over two weeks. Been out of town so couldn't really do anything with one anyway, but I'm ready to start. Before I left town I also found another Urologist who was pretty much the exact opposite of the doc I saw first. This guy clearly has some interest in the disease and my welfare. He's familiar with Dr. Chu, doesnt recommend wasting $ on Potaba, and didn't hesitate to prescribe the Pentox for me.....
After exam, he suggested that he could proceed with an ultrasound, but he felt strongly that even with a substantial mass nothing would show up due to the lack of calcification, and the early stages of the disease.....
I feel fortunate to have started the PAV (minus the V) early on in the evolution of my Peronies. I've been taking Pycnogenol since it was first imported into the US back in the late 80s, but have upped my dosage to a full body weight dossage (1 mg per pound). Although I've launched into treatment early, I'm still, however, subject to painful erections and things seem to be getting progressively worse.
Are there others browsing the forum here who are in the early stages as I am? I have very definate indentations - perhaps minor hourglass, a substantial mass, and painful erections to the point that intercourse isn't working. It seems like the vast majority of info and dialogue on this forum is geared towards the latter stages of Peronies. I'd like to focus on the early stages - where I am right now and how best to attempt to minimize the negative effects of the future evolution of the disease which I'm sure are coming....
As far as the VED goes.... I know that pain during use of the VED MUST be respected.... If I have pain during all erections these days, how should I approach use of the VED?
parajack:
You should definitely respect pain or discomfort while using the VED. If you have any pain with VED use, you must go slowly and carefully with the amount of pressure. You do not, repeat do not, want to cause any further trauma by overpumping the pressure. Let your feelings about that be the guide as to the amount vacuum you apply. Caution is the watchword in VED therapy.
When you first start the protocol, you have to use your best judgment about what your penis will take and how to use the VED to help instead of causing further problems. VED therapy is not a quick fix, but rather an extended "therapy/treatment" that should help rather than harm.
Feel free to address any questions you have about VED therapy to the forum so that you can get good advice, etc.
Old Man
Quote from: parajack on November 07, 2009, 10:43:43 PM
I feel fortunate to have started the PAV (minus the V) early on in the evolution of my Peronies. I've been taking Pycnogenol since it was first imported into the US back in the late 80s, but have upped my dosage to a full body weight dossage (1 mg per pound). Although I've launched into treatment early, I'm still, however, subject to painful erections and things seem to be getting progressively worse.
Are there others browsing the forum here who are in the early stages as I am? ... If I have pain during all erections these days, how should I approach use of the VED?
parajack,
I know there are several now on the forum who are in the early stages, also referred to as the "acute" stage of Peyronies Disease. You are doing exactly the best approach with the PA(-V) meds along with VED usage. Pain during the first months is common and seems to go away shortly thereafter. The best thing to do at this point is to try to halt any futher progression.
Les
Parajack - The P in PAV usually refers to Pentoxifylline (Trental). Are you on Pentox?
Quote from: skunkworks on November 08, 2009, 10:32:19 PM
Parajack - The P in PAV usually refers to Pentoxifylline (Trental). Are you on Pentox?
Yes, taking the Pentoxifylline 3 times a day, and have been for about 3 weeks or so.
Quote from: lwillisjr on November 08, 2009, 09:40:09 PM
Quote from: parajack on November 07, 2009, 10:43:43 PM
I feel fortunate to have started the PAV (minus the V) early on in the evolution of my Peronies. I've been taking Pycnogenol since it was first imported into the US back in the late 80s, but have upped my dosage to a full body weight dossage (1 mg per pound). Although I've launched into treatment early, I'm still, however, subject to painful erections and things seem to be getting progressively worse.
Are there others browsing the forum here who are in the early stages as I am? ... If I have pain during all erections these days, how should I approach use of the VED?
parajack,
I know there are several now on the forum who are in the early stages, also referred to as the "acute" stage of Peyronies Disease. You are doing exactly the best approach with the PA(-V) meds along with VED usage. Pain during the first months is common and seems to go away shortly thereafter. The best thing to do at this point is to try to halt any futher progression.
Les
Thanks Les. I'm assuming that the reduction in pain is the natural progression as the scarring and calcification begin and advance after the 'acute' stage is passed. I don't believe at this point that any measures will stop the evolution of my Peyronies Disease. My symptoms are clearly advancing with even a slight upward bend noticeable now with a hard erection along with a fair amount of pain. My hope is that if I already have measures in place when the scarring and calcification begin (if they haven't already), that I can minimize the long term effects, curvature, reduced size, performance, etc.... or perhaps even give eventual surgury, if required, a greater chance of success....
Jack
I'd like to ask those experienced with Peyronies Disease:
Do you think I should add the "V" to my regime to treat my acute stages of Peyronies Disease? I only have very occasional erections at night (that I'm aware of anyway) and I'm starting to wonder if I may be ignoring a potentially critical component of dealing with the early stages of this disease. A strong erection provides blood flow, which is critical to pretty much any healing... I'm assuming this is part of the benefit of the VED therapy as well? The more I read the more I think I might be screwing up by not using Viagra or it's equivilant.... (never used it)..
thanks!
Jack
I personally think some kind of erection booster is vital. Simply put, the more erections you have the more you will get.
Also in theory it should work synergistically with the l-arginine to keep your NO levels high, which discourages fibrosis.
Do the Pentox or l-arginine cause intestinal gas? Something in the regime I've started to combat Peyronies Disease is giving me unnatural nasty gas which in normal circumstances, would be manageable.... however, I work as a pilot and this particular situation is something which must be addressed ::) Anyone have any experience with this?
Jack
Parajack,
Yes, I also tend to get gas from pentox. I work alone so it's not much of a problem (I guess maybe the dog has rough time of it ;D ). For me, avoiding acidic foods like red pasta sauce, tomatoes and orange juice at lunch time has helped reduce any stomach upset and kept things, err, quiet. Everyone's intestinal chemistry is a bit different so try out different foods to see if that helps. In general, high protein diets and dairy can cause gas so maybe ease up a bit on those.
Gas notwithstanding, I still think pentox is worth it. My first 2 months on pentox were tough because of the GI symptoms but those have since passed. Hopefully yours will too.
Best,
-Skjald
Quote from: parajack on November 09, 2009, 02:29:16 PM
Thanks Les. I'm assuming that the reduction in pain is the natural progression as the scarring and calcification begin and advance after the 'acute' stage is passed. I don't believe at this point that any measures will stop the evolution of my Peyronies Disease. My symptoms are clearly advancing with even a slight upward bend noticeable now with a hard erection along with a fair amount of pain. My hope is that if I already have measures in place when the scarring and calcification begin (if they haven't already), that I can minimize the long term effects, curvature, reduced size, performance, etc.... or perhaps even give eventual surgery, if required, a greater chance of success....
Jack
Jack,
You're right on target. You have described what I would refer to as "typical" text book Peyronies Disease (if there is such a thing). The acute phase, some pain, slow progression.... then progressing into stable phase with lessening of pain and potential for calcification. So yes you want to take what measures you can during the acute phase and hopefully can reverse or at least lessen the process.
My Uro also recommended that I take Colchicine .6 mg twice a day, which I started along with the Pentox. He said that he wouldn't suggest this if I were in the latter stages of Peyronies Disease, but because I was in the acute phase, he thought it might be helpful. I think at that point my eyes had kind of glossed over and I didn't get or understand the explanation. Does the rec. make sense to others here? Is there a link on the forum which someone could refer me to where I could educate myself more on Colchicine?
Thanks,
Jack
Jack:
Colchicine has been prescribed for Peyronies Disease symptoms many times in the past. Some have had gastro problems with it and others tolerate it very well. If you are not having any problems with the med, would suggest that you follow your uro's recommendation at least long enough to see if it works for you. In my case, I took it for over 6 months with no noticeable results. It simply just did nothing for me.
In the acute stage or Peyronies Disease, you just have to keep trying things until you find something that works. If I had known about the VED therapy in my early stages, it would have given me better results.
Anyway, stay with your uro's schedule of meds for you would be my suggestion.
Old Man
Parajack - Some studies have suggested colchicine to be no better than placebo, whereas others have shown it to be quite effective. In the positive study I saw it was used alongside vitamin E, so perhaps the combination is best. One small study suggested that smoking may impede the success of treatment. However, perhaps it is the case the smoking may have scope to worsen peyronie's disease regardless of treatments taken, rather than being something specific to colchicine.
I agree with Oldman, that at this stage, it's not a bad strategy to try various treatments and hope that you hit on something that works. With the pentox and VED as the mainstays I think you're in good stead!
Thanks for the replies.
I've been experimenting with the VED. Messy and time consuming but not painful as I thought it might be. I'm sure I'll get it dialed in pretty quickly. Challenging seeing as how I'm on the road all the time.....
Jack
Be advised that some believe trimix can cause or lead to peyronies disease. Any natural way to get an erection, with the hand, with a woman, or with the VED is probably better.
Comebackid
Quote from: cowboyfood on October 05, 2009, 08:22:41 PM
Quote from: hb on October 05, 2009, 06:46:55 PM
... At first Viagra worked fine for me, but your body seems to get used to it after awhile and it doesn't work anymore. ...
I don't think there is any research to support this assertion.
CF
In fact there is a reasonable amount of research out there showing that Viagra works better if you take it regularly, even daily.
Discontinuing the Colchicine... Still waiting on the Uro to get a Viagra prescription.
Seems as though I've been a bit "off " for the past 5-6 weeks or so, which is when I started the PAV without the V. My Uro also put me on the Colchicine, thinking that because I was in the acute phases, it might be helpful. I just browsed casually on it's side affects, etc, and didn't pay much attention in the beginning. I focused more on the Pentox. I've noticed over the past 4-6 weeks that I've been off and not as healthy as I normallly am. I rarely get sick with no colds or flu for a year or two being common with me. Over this past month I've had to fight off a cold on two different occasions, and I seem to frequently have a runny nose without being really sick, etc.... I've been much more lethargic and something just doesn't seem right. I started reading again everything I could on the meds and more indebth research on the Colchicine has turned up several references to bone marrow production and white blood cell count decline... As I clearly don't suffer from gout, and the risk / reward scenario of the Colchicine is completely sketchy at best as it relates to Peyronies Disease, I have decided to quit the Colchicine.
Anyone have any strong opinion on this one way or the other?
At the same time, I'm a bit frustrated that I didn't immediatly get going on the V portion of the cocktail, and I'm still trying to get it started. After more reading on how exactly the Pentox helps with blood flow and circulation, I'm clearly screwing up by not doing whatever it takes to increase the frequency of erection for it's healing blood flow benefits, especially during the acute phases..... I've turned up the heat on the Uro office this morning and hope to get resolution sooner than later.
Jack
Jack, Don't worry too much about the V part. Its Pentox that is really the primary effective agent. So just keep going with the Pentox. - George
I'm still struggling with side effects which I'm assuming are from the Pentox but don't want to jump to any conclusions.... I've read everything I can find on the Pentox side effects and things seem somewhat inconclusive for what I'm experiencing.
Here's what I've been dealing with for the past few months....
itchy runny eyes
sneezing and sometimes runny nose....
vision that seems more blurry than usual...
general tiredness and lethargy...
I don't ever have any allergies and I don't have a cold or flu or anything, just cold like symtpoms sometimes. The itchy eyes are getting bothersome as well as the occasional sneezing followed by runny nose... It just seems as though I've been "off" since I started the meds... I stopped the Colchicine so all I've been taking is the Pentox.... I know the blurred vision is a commonly listed side affect of the Pentox. Another side affect listed a few times was "red eyes".
To throw a wrench in things I'm also dealing with a failed root canal which is causing some pain and inflamation. My dentist suggested that this could be wreaking havoc on my immune system and perhaps could be causing the cold like symptoms. I'm scheduled to have the root canal re-done (oh boy!) next week so I guess time will tell.....
Is there a good thread which discusses Pentox side affects which someone could link me too?
The VED therapy is good although I've only managed sporadic use thus far. My symptoms have progressed aggressively as I now have a 20 deg or so upward bend with moderate pain during erections... seeing URO in a couple of weeks..
Jack
I just had my 12-month visit to the uro (12 months since peyronies started). I have been on Pentox for about 10 months, and also take cialis (and occasionally l-arginine). I also have been using a VED. Still, no improvement at all to my 50 to 60 degree curve. At my visit, the doc said that at this point, it is what it is. Meaning, it's not going to get better without surgery. This was news to me, but after perusing this site for the past year, it doesn't seem like very many of us ever get better, even just a little bit, without surgery. I know there's all sorts of evidence about pentox, etc., but there aren't very many posts in the improvement section or anywhere else here really about people getting better (aside from the lucky few). I dont want to be Mr. Negativity, but based on my doc's advice, I'm thinking of stopping all the pills and VED (he said there's no harm to continuing - just that they won't do anything) rather than continuing to pretend like I'm doing something beneficial. If there's a chance of improvement, I will continue, but I'm starting to doubt it. The plaque seems like it is pretty hard, and even the doc said it isn't going anywhere on its own. I guess I would consider surgery in the future, but I don't think I'll be going that route for some time.
Does anyone have any advice? I sure could use some. Sure I keep taking these pills and doing the VED? Thanks.
Well I guess you have to ask yourself which source of information holds more credibility to you, a properly run, peer reviewed study or the single opinion of your doctor (is he even a peyronies specialist)?
People on these forums have have seen results after the 12 month mark.
Personally I think if you can afford pentox, you should be using it. It is THE single most important Peyronie's treatment available. With VED even more so.
Why would you stop using either of them? Even if they do nothing to treat the Peyronie's curvature, they will almost certainly increase your erection quality, which is a huge step toward putting Peyronie's behind you.
joecancer:
I echo skunkworks comments. You must keep trying things. I know, having had this mess for over 56 years now, there can be light at the end of the tunnel. I found several treatments/therapies that worked for me over those years. The VED therapy was the single most thing that worked for me.
You should keep the faith and use the VED on a daily basis if possible. The daily therapy gives the most results. BTW, which VED model are you using?
Old Man
I echo everyone's comments about not giving up. I would always keeping trying something until I decided a dew course of action. Is ay that meaning until you choose to do surgery then I would keep on trying the VED and meds.
I would add that we have said time and time again that there isn't that one thing that works for everyone. So I think it is important to point out that we need to keep trying, need to be diligent, but at some point we each have to make a decision wheter a particular therapy is working. Whether it is meds, VED, traction, hot baths, etc. If you feel a particular therapy is leading to a dead end, then one must decide if it is time to do something different.
Les
Joe, One has to remember that part of the reason for treating Peyronie's is that without treatment it can get worse. And in that regard, even surgery is no guarantee. Not all surgeries are successful, though, granted, nowadays most are. Also, in many cases of successful surgery there is at least some regression afterwards. And, in any case, surgery is certainly not going to restore you to your pre-Peyronie's condition. But the only hope of rapid improvement IS SURGERY. On the other hand, Pentox will usually prevent any progression and traction and VED can provide significant improvement. Few people post these improvements in the improvements thread because few people consider stretching to be a cure. But in a functional sense it is. So I think the "whats the point of trying" attitude has little basis in reality. If you want a quick fix, see a surgeon, and find a good one who has done a lot of these and has a sound track record, but don't knock the treatments that are popular around here, because (in spite of what your doctor might think) a lot of us are using them and are very satisfied with the results we are seeing. - George
thanks guys, I will take your advice and keep plugging away. I think there is much more knowledge on this board than my doctor has, so I will ignore him and hope for the best. Old Man - I have the Fitz 3-cylindar VED.
Joe,
You heard it from me, pentox helped my peyronies, I improved significantly! I'm currently on a three week break from the drug, planning to go back on it again. I was on it for 9 months this last time. Its def worth it!
Keep in mind not everyone updates progress under that board, unfortunately, many people have been helped by pentox and in our resource library you can see the studies that show its effective.
Keep in mind, it could have kept you from getting worse, you just don't know. I'd stay on it and tell the doc you don't want surgery at this point, but thats just me. VED has helped many men to, other than pentox and the VED I know of no effective treatments that I've actually heard men tell me worked for their peyronies.
Comebackid
I just started Pentox and I can barely feel the scar tissue. I am also starting fastsize traction next week. I am wondering about the difference between fastsize and VED in terms of what it will help (i.e. curvature, hour glass, etc.).
joecancer:
OK, you do have one of the best medical quality VEDs available at a good price. Are you using or plan to use the 26 week protocol posted in the VED board?
Old Man
Joe
The VED therapy is the best thing you can do to help keep your penis healthy. Peyronies and ED together are a real bummer.
When all else fails you then surgery is the only answer. I know I tried everything legal and some not.
Now after 12 months of trying everythine else you have to make a decision and that is not an easy one. The best surgery for peyronies with ED is a penile implant. I had mine October 2008 and today I have a straight erection and have recovered about 1" lost to peyronies and all the complications that followed. The only implant that will help recover lost length is the AMS 700 LGX, www.amslgx.com. See My History for more details.
Good Luck
Jackp
Hi.
I have been diagnosed with pyronies and my urologist is suggesting surgery. From my own research it seems that surgery is not always successful and has side efffects. I have a double bend in my penis, it is nearly "S" shaped. Intercourse is impossible although I do get erection which is much smaller than before Peyronies Disease. (Typically male. I am embarressed even writing about this). This started about six months ago.
I have a theory that pyronies must be related to other medical issues that I have. I have had fibromyalgia for many years. In the past two years I have also been diagnosed with dupitrons contracture. This is a build up of fibrous tissue in the hands resulting in my hands bending in like a claw, with fibrous nodules on the hand. Unfortunately I am attending three different consultants for fibromyalgia, pyronies and dupitrons. Each consultant looks after their own area of speciality and dismisses any connections betwwen symptoms. My GP agrees that the connections should be explored but unfortunately there is no way to do this.
Can I ask any of you who have had Peyronies Disease and have more experience and knowledge to reply to me. I need advice on whether to have surgery and also are there other treatments I can try first. What is the longer term prognosis.
Please I need help with this.
Brend
brend:
Sorry to hear that you have joined the ranks of the "anointed" with Peyronies Disease. It is a very terrible and devastating disorder of our most prized possessions, the ability to have sex and reproduce.
Now, let me add my 2 cents to your equation. Surgery is considered by most all on this forum as the last resort in treatment for Peyronies Disease. However, under certain circumstances it is a very viable solution to the Peyronies Disease problem. JackP can step in when he reads this post and add his situation and how he coped with it by getting a penile implant. His success story is posted elsewhere on this forum, so locate it and read his history.
First, my recommendation is to get started on some sort of therapy as soon as possible. There are many histories of how guys have been helped with the various treatment/therapies for their Peyronies Disease symptoms. Since you have a double bend and penetration seems impossible, you have a different situation than most, so you need some special attention to that. I have had great success using the Vacuum Erection Device (VED) therapy. Today, I have little if any, symptoms of Peyronies Disease which I attribute to the VED therapy that I used about 15 years ago.
At this point, you need to get a definite diagnosis of Peyronies Disease from a qualified urologist, if you have not already done this. Then select some form of therapy whether it be oral, traction or VED. Get started on whatever method you choose as soon as possible.
I am sure that others will jump in and relate their idea of what and how you should proceed with some form of treatment/therapy. Feel free to just ask any and all questions and I am sure that someone will give you an answer quickly. Good luck to you and again, get started on getting help soon.
Old Man
I am 54. I had a radical prostetectomy (prostate cancer Gleason 6) July of 2007. My wife has depression and had a very difficult time dealing with it; which cause performance anxiety for me. Consequently a lack of firmness during our physical relationship caused buckling on several occasions (I knew at the time I was injuring myself--never dreamed I could damage that part of the body).
Bottom line:
-I have Peyronies--curvature went from about 30% to 60% (first noticed it about 9-12 mos ago)
-I have taken Neprinol for 2months--not seeing results (they say it can take 6 mos. w/100% results --Dr. Levine
supported device
-I have worn the FastSize extener for over 3 mos (have had to alter it--upside-down, various ways of wearing)
-My curvature is towards the tip (thinking FastSize has increased the curvature)
-Frustrated w/current approach.
-Been to (3) docs that supposedly specialize in Peyronies Disease treatment (felt I knew as much as them --none of them gave me any hope
-In good physical shape.
-I believe and have great desires for improvement and coerection
Considerations for improvement:
-Continue Neprinol ($150 for 2 mos!! wow!)
-Continue FastSize or return it?
-Download Bill Bodri's book on how to get rid of the disease
-2nd Meeting with Peyronies specialist (has treated over 1,000 cases)on Feb 1st
-Haven't tried Vitamin E, D, Verafamil, Pump,
-Bend against the curve exercise
-dig into the forum and facts on this website
Can anyone help me? I have wrestled with this on my own--no one to discuss it with. My wife is finally on board. I'm not into spending countless hours researching. I would like to get to the point with what appears to be an effective approach starting asap.............looking for a little input.
Thanks,
Neidz
neidz:
Sorry to hear that you have joined the ranks fo the Peyronies Disease family! There is some light at the end of the tunnel for you. You state you are into research on the forum, but you must force yourself to do at some. There are valuable posts all over the different topics that pertain to your particular case. You are not alone with this, so stay the course, get into some form of therapy as soon as possible.
The traction device has in some cases caused further injury. So has the VED when used improperly, but in the end success has been achieved with its use by many. So, do some research in the VED board where there are many topics relating to the use of the VED, how it has helped guys and the results of its use.
Based on what you tell us in your post, you do have a problem. Since your wife is now on board with help for you, enlist her into researching the boards on the forum for you. She probably will learn more than you about Peyronies Disease and be able to guide you into the right direction. Peyronies Disease is a mutual admiration society, if you will, so your wife is a very essential part of any resulting success you gain from any treatment/therapy.
Before you decide on any course of action, get all the facts and information you can about Peyronies Disease and how it relates to your particular situation. Sorry that the Fastsize has most likely caused your further damage. Your curve appears to be quite a bit, so you need to work on getting it straightened. The VED therapy has worked for many of us by getting some return to a basically normal size and straightness.
Let us all know if there is anything we can do to help. Feel free to ask any and all questions that come to mind. All here will be glad to assist you in any way.
Old Man
Neidz,
Sorry to hear you have this condition. During the first 12 months, known as the active phase, the curvature can worsen. The curvature may not be attributed to the fastsize device. Dr. Levine says that the traction device may be limited during the active phase. For maximum results, have much have you worn the device? Have you tilted the device away from the curve?
Neidz,
I feel for you too. One other thing you should think about immediately is not having sex again with anything close to a soft erection. Your penis will incur more damage and it is easier to buckle with the Peyronies curvature. I use a small dose of Viagra for intercourse just to make sure I'm as erect and hard as I can be.
My Doctor prescribes 100m and I just bite off about a fourth of it each time. It's cheaper that way.
Also, I wouldn't have sex again until your penis has had time to heal and you feel no tenderness.
GS
One thing caught my eye about your post. You said you think fastsize made your curve worse. I used the VED, it def helped me gain girth and length but appear to worsen my curve or aggravate it. Mainly my curve is when semi erect, and then it straightens out when fully erect, but I have venous leakage problems and loss of size problems. I think sometimes the plaque needs to be softened before being stretched, or the stretching has to be done extremely lightly as not to tear the plaque more. The science of this is complex, and looking at cells on a microscopic level to figure out the exact right amount of tension to get the best result. With that being said have you tried pentox? Or the VED? You may want to ditch the fastsize for now, I was on pentox for nine months, now am breaking and doing VED daily, like a hybrid treatment series, soon I will start the VED again.
Comebackid
Hello all! I'm a new member, as of January 30, and having a bit of trouble navigating around the forum. Would I be correct in saying that the forum consists of multiple boards?
I was diagnosed as having Peyronies in October, 2009. The doctor said it would improve over time. Since I am not currently in a relationship, the only time I have an erection these days is sometimes in the middle of the night, which causes me to wake up. The only thing I have tried so far is 800mg per day of vitamin E, and for a while I was using vitamin E oil topically as well. I Also started taking PABA recently. I have quite a bit of curvature, and I'm not seeing any progress so far.
I'd appreciate any suggestions.
Thanks,
Zeppo
Zeppo:
Yes, the forum consists of many "boards" with subject titles for the many areas of Peyronies Disease that it covers. You simply log in to the forum which will bring up the home page. Scroll down the page and it lists all the boards that are on the forum. You can select one by simply placing your mouse pointer on the subject title and then clicking it to open that board. There are sub topics and titles under these boards for the various subject matter pertaining to that board.
Feel free to ask any and all questions you might have. There is always some member of the forum that will help with an answer to your questions.
Sorry to hear that you have joined the "Peyronies Disease family". It is very devastating to learn that one has the disorder.
Old Man
Old Man,
Thanks for your reply to my post. I have read about Dr. Herazy's manual stretching method. Is there any way to find out if, (or how well), it works? I'm guessing that some
of the forum members have tried it.
Thanks,
Zeppo
Zeppo:
The jury is still out for me on the Herazy thing. I do not adhere to the method that he is touting on his web site and later on this forum.
I have stated that I will not address him or his method in any way further on this forum. So, maybe someone else can help you with your question.
Old Man
Thanks Old Man - much appreciated.
I feel good and hopeful from reading your comments and begining my research on this forum. My curvature is possible different than most. If you were to compare it to your finger; the center joint of the finger (I'm thinking) is the area that most people have the curve. For me, my curvature would be at the joint closest to the fingernail--also the area where the plaque is--which I think is an area that is difficult to straighten with a device like I have used. If you bend the middle joint of a finger and pull on it to straighten it--that seems to work well. If you bend the joint close to the fingernail and then pull on the finger to straighten it, it is a more difficult angle, so I am not certain how to address it. My curvature seems to be almost straight upward at possibly 60+ degrees when erect, with approximately pencil width by about 1.5 inch length of plaque--which starts at about the tip/hood of the penis.
neidz:
From your description of your curve looks like you would be a candidate for the three cylinder VED therapy rather than the traction. As you state where your symptom is might interfere with attaching the mechanical portions of the traction device.
Read up on the VED boards about how it is used, some success stories and the 26 week protocol for using the various VED models.
If you have further questions then about VED usage, just let us know.
Old Man
neidz,
Be aware that a 60 degree bend is close to what most doctors would consider "severe". And that whether you use either VED or traction therapy that there are few cases where a 60 degree curvature was fully corrected. But it is worth trying to see if you are able to achieve some or any improvement with these techniques.
Les
Does it stand to reason that a gentle massage in the opposite direction of the curvature will help? It seems to me that the vitamin E will soften the placque over time and the mechanical motion of the massage sould begin to break down the scar tissue? Any comments from those who know?
Vitamin e's effectiveness is doubted by many doctors, though some report success. Pentox is the medication you want. It breaks down scar tissue and increases bloodflow. Also, l-arginine supplements increase bloodflow.
Rather than gentle massage which could cause damage, you should use either a VED or traction device.
These are the standard conservative treatments. There is a lot of information on all these treatments on this message board. Let us know if you have further questions or PM me with anything specific.
Hello all,
Let me start by saying that I'm not sure that I have peyronie's disease. I'm 22 years old; I don't drink, but I smoke cigarettes and use marijuana recreationally. A little over three months ago, I was having sex with my girlfriend, and my penis was pushed laterally very abruptly, causing a loud pop. There was no pain, and my girlfriend and I continued to have intercourse, but, since the incident, ejaculating has been...uncomfortable. I wish that was the only symptom, however, I've also noticed a considerable loss of length and girth (both flaccid and erect), almost as if something is missing in there--leading me to think there is some sort of obstruction. In addition to the loss of size, there is a small indent (for lack of a better term) just below the glans that is most apparent while semi-erect.
When I feel around, I feel the firm, rubbery, chord-like tube that has been described by a few contributors on this forum running the length of my shaft. However, with a little massaging, my penis becomes soft and spongy once again, although my size hasn't returned for a moment since the pop. When semi-erect, my penis will curve slightly to the left but straighten with a full erection (which I am still able to get with relative ease). The erections aren't painful, but there is a feeling of soreness, almost like an overworked muscle. My right testicle has also started to hang in a very strange way, making it painful to wear certain pants. I also find it difficult to urinate standing up, or to empty my bladder when I do so. I have good days and bad, but, generally speaking, since the injury(?) the condition has only worsened.
I've seen a doctor about this, but he only stuck his finger in my butt to check my prostate. He didn't seem very interested in what was going on with my penis, but referred me to a urologist. I don't know if I should go to just any urologist, but I'm unsure where to turn. I don't live very far from a world-class university hospital at a major research institution; would this be the best place to go for help? Do my symptoms sound like a form of peyronie's disease? If not, could whatever this is lead to peyronie's at some point in the near future?
Any answers would be greatly appreciated. Thank you all in advance.
P.S. I started taking a whole lot of supplements a couple of weeks ago when I feared that I may have peyronie's. I'm taking things like l-arginine, vitamins c & e, acetyl l-carnitine, omega-3 fish oil, and gingko. I'm also taking a men's multivitamin, as well as 5-htp and GABA for the depression and anxiety (which seems to make my condition worse).
Gerg,
By all means, go to a urologist ASAP. It's always better to be safe than sorry. And knowing is better than worrying.
GS
Gerg,
I find it interesting the number of guys who post here who describe a "pop" during intercourse and then wait to have it checked out. By all means get to a specialist. What you have might not be or even lead to Peyronies, but you may have torn, ruptured or torn a ligament. My personal experience is that university hospitals tend to be more leading edge on symptoms and treatments. You should be able to look up the urology department on the university's website and see what they specialize in.
Les
Believe me, if the pop was accompanied by some sort of pain, or there was visible bruising or swelling I would have taken an immediate trip to the emergency room. However, I've heard this same "pop" during intercourse a couple of times before and it was always painless--like cracking your knuckles--and did not lead to complications. Like I said, I have seen a doctor about this and he seemed uninterested. Also, after reading many of the posts on this forum, it seems that a lot of specialists don't know what they're talking about. As more time passes, I'm becoming increasingly convinced that I have peyronie's. I was merely asking if it sounded like peyronie's to anyone else so that I could seek out a qualified, competent urologist.
I know, I know, I'm supposed to seek out the urologist first and he is supposed to tell me whether or not I have peyronie's. I guess I just don't want to hastily make an appointment and pay out the a$$ just to be told to "take vitamin e and come back in six months."
Yes, see the best urologist you can find in your area. It is worth the office visit cost. If the major university near you has a medical school, seek out their urology department. If any urologist tells you "take vitamin e and come back in 6 months," then he's NOT the one you want treating you. That is the same as a primary care physician saying "take 2 aspirins" and come back if it's not better. If the doctor had your symptoms, is that what he would do? NO! He would find a specialist and get some real medicine and treatment.
At age 22, you've got your whole life ahead of you. Don't spend another day worrying if you have a problem, go find out. Life's too short.
You have probably noticed most of the guys here developed this later in life, usually in their 50s-60s. Even then, it can be a big mental concern. At your age, you have other things to be concerned about. GET TREATMENT NOW.
Q. How do you measure curvature? I've had Peyronies for over 3 years and as far as I can tell my curvature is 90 degrees. That is, when I stand up straight the curve stars at the base of my penis and my pal is looking directly at the ceiling. I'd call that 90 degrees. Am I correct? From my perspective if I had a curvature of 45 I'd be home free. As it is, I can have intercourse, but only with a minimal penetration of the head of my penis. If I push on, not only does it cause my wife discomfort, but it turns back out in the opposite direction.
This is my first post but I lurk now and then. I'm 72 and have no ED problems. However, my sex drive isn't as fierce as it was in younger days. Doing without is tolerable, but being able to have a normal sex life would be sooo much better.
One thing I don't see discussed is solution by sexual position. We are much more successful with my wife on top.
I haven't been able to analyze why, but it seems to work out better. Any comments on creative positioning?
C. Gomez
To get an exact measurement, you need to have a protractor. That's what the radiologist used when measuring the curvature when I had my penile doppler ultrasound. I thought my curvature was worse than it was. You have to view it from the side since if you look straight down, it will be distorted. If when you look at it from a profile (side) view, and it is in fact 90 degrees, you might want to consider surgery.
90 degrees is considered very severe and given your information, would likely make you a prime candidate for (immediate) surgery. Not saying you should get it, but that's an option.
In terms of the sex positions, I can't help much with that. It seems that some people are able to function with curves even up to 60 degrees while others have trouble at 45 degrees, so I think it depends on the person. If it is presenting unsatisfactory intercourse, a trip to a male sexual function specialist could be in order.
Greetings,
My doctor is Dr. Lue at UCSF! I saw Dr. Lue for the first time in August 2009. My Peyronies Disease symptoms were only a month or two old.
He prescribed Pentox ONLY! He and his assistants told me to NOT take any other remedies or attempt any other VED style treatments etc..
I had a bad reaction to Pentox psychologically due to being bi-polar..Dr. Lue asked that I discontinue the Pentox for (1) week then continue again...same result and I was advised to discontinue..
At this point I began a self decided regeiment of: ALC 2000, L-Argine 2000, Vitamin E with the 8 Tocos, Aloe Vera Gel Capsules, Vtamin C 1000, Zinc 30, Bcomplex Vitamin.
I never felt better in my life! I felt like a marathon runner..lost weight..was faster stronger more athletic etc...
Over (6) months time my Peyronies Disease had really changed. It changed in size, location and hardness. It seemed to settle...with an upward curve and a touch of hourglass..
Saw Dr. Lue in Feb...new ultra sound...he was amazed at the progression (negatively)...he said the progression was very aggresive (advancing negatively). He prescribed Colchicine ONLY! nothing else...when I asked him about L-argine, or Vt E or VED therapy...he said no to all of it....he just wants me to take Colchicine...
I would love to get any feedback as a second opinion...Thanks for taking the time to read my post!
Prayers for you all!
m
Briden, I would suggest you look into a couple of things. 1) I would suggest that you look into getting your Vitamin D levels checked and, if indicated, fixed. More information on Grass Roots Health (http://www.grassrootshealth.org) and Vitamin D Council (http://www.vitamindcouncil.org) websites. 2) I would suggest you look into adding a good quality fish oil such as the Nordic Naturals brand to your regimen. Both of these are helpful in reducing inflammation AND both should also help to address your bi-polar issue. Other than that, ALC is just about the most effective thing I have found short of Pentox to deal with Peyronie's and the Aloe Vera should be helpful with the bi-polar. As for Dr Lue, I think his frustration with many of us is that he really wants to be helpful, but he also wants to add to his research base, and when we use other stuff as most of us do, that doesn't advance his research project, because it leaves open the door that something else might be providing any observed benefit OTHER than Pentox AND even worse, that something might be preventing the Pentox from achieving the best possible outcome and might actually lead to Pentox getting an undeserved bad rap. Dr Lue is a wonderful and compassionate doctor, but there is a huge tension between short term perceived advancement of individual cases by including other components and longterm advancement of mainstreaming Pentox treatment which could bring large scale benefit to the whole Peyronie's community. Those are really difficult issues to juggle and I don't envy him. And it could have something to do with why he discontinued my Pentox prescription recently. - George
Quote from: George999 on March 18, 2010, 11:51:59 AM
Briden, I would suggest you look into a couple of things. 1) I would suggest that you look into getting your Vitamin D levels checked and, if indicated, fixed. More information on Grass Roots Health (http://www.grassrootshealth.org) and Vitamin D Council (http://www.vitamindcouncil.org) websites. 2) I would suggest you look into adding a good quality fish oil such as the Nordic Naturals brand to your regimen. Both of these are helpful in reducing inflammation AND both should also help to address your bi-polar issue. Other than that, ALC is just about the most effective thing I have found short of Pentox to deal with Peyronie's and the Aloe Vera should be helpful with the bi-polar. As for Dr Lue, I think his frustration with many of us is that he really wants to be helpful, but he also wants to add to his research base, and when we use other stuff as most of us do, that doesn't advance his research project, because it leaves open the door that something else might be providing any observed benefit OTHER than Pentox AND even worse, that something might be preventing the Pentox from achieving the best possible outcome and might actually lead to Pentox getting an undeserved bad rap. Dr Lue is a wonderful and compassionate doctor, but there is a huge tension between short term perceived advancement of individual cases by including other components and longterm advancement of mainstreaming Pentox treatment which could bring large scale benefit to the whole Peyronie's community. Those are really difficult issues to juggle and I don't envy him. And it could have something to do with why he discontinued my Pentox prescription recently. - George
George,
What dosage on the ALC and is one brand better than the next?
Fred
I would say around 2 grams / day is the usual, others here may have input in this regard. I really don't have any favorite brands. Any of the mainstream brands should be OK. I would avoid store brands though. - George
Hi Brend - I also have been diagnosed with Peyronies Disease. I had one bend which pointed up, rather severe about 3/4 up from the base of my penis during erections. This effect has disappeared with my taking oral doses of vitamin E and B complex. Now my erections are not as full as they used to be or as large, but I can have intercourse and without pain. I also have Dupuytren's Contracture. I developed both at the same time. I am seeking treatment for the hands now and have had contact with the Center in Boise Idaho - Dr. Kline. I am considering NA and then radaition following NA. Both of these diseases began about 5 or 6 years ago, but I only suffered with the full effects of Peyronies for about a half a year, before that seemed to go into remission. I have a great sympathy for what you must be going through. If I can help you in any way please ask!
-related
Greetings Brend,
I also have been diagnosed with peyronies disease. Though I do not have a significant bend (so far at least) in my erections. The diagnosis was made based on the palpapable lump on my left upper side of my penis near the base. The many scans the urologists (seemed like the entire group on staff had to be consulted,,Ugh!) took of my penis all indicated the lump was attatched or within the tunica albuginia so even though it doesn't cause any noticable bend in that area they said it is best diagnosed as peyronies disease.
I also have the similar concern that my peyronies is connected to my other health issues;
I have keloids mostly on my chest (since my early teens).
I have frequent attacks of muscle knots and cramps (only for the past 6-7yrs).
I have been getting Recurrent Priapism in systematic cycles since early childhood.
I have hypermobility in some joints.
In my family there has been numerous joint issues, including fibromyalgia.
I can't give you any experienced input as to treatments or surgery. I'm basically here to learn more about that stuff myself.
My penis has become so numb to sensation that I wouldn't likely gain much by having surgery to correct a bend (if that were to develop in my case).
We should inform each other if we learn something concerning the possible connections between health issues.
-diminishedhope
Brend,
I have had Peyronies for 21 months now and found this forum about 6 months ago. Prior to finding our forum, I had little hope for improvement and was very depressed. I had wasted a lot of money chasing different treatments offered across the internet. There is a lot of information on our website and forum. You will need to spend the time researching all the information offered here, but it will be well worth your effort.
Good luck to you.
GS
Hello,
I just joined this forum. Apparently i have peyronie's disease. the onset was about 6 months ago when i noticed changes in shape and size of erect penis and began experiencing painful erections and even more painful intercourse. i saw a urologist who told me that there was no real treatment for the disease. he recommended motrin for pain and to return in a couple months. the pain has subsided considerably HOWEVER, the size of my penis has continued to decrease in both length and girth and the shape has become more deformed. prior to the onset of this disease my erect penis measured about 6 inches. now it is around 3.5 inches erect! i've never been obsessed with size but this leaves little surface area for stimulation and intercourse with my very loving wife has not been satisfying for either of us. we mostly try to pleasure each other with oral sex and manual stimulation which is fine but limiting. on your forum mostly i've read about the changes in shape and extreme curvature but decrease in size has become my most troubling symptom and i am wondering if other peyronie's sufferers have similar experiences where there is a decrease of almost 50% of original size. thank you for any information. it's much appreciated.
Acetyl
aceytl:
Sorry to hear that you are experiencing a shrinkage problem. This is one of the most devastating elements of Peyronies Disease, loss of size and along with it pride in ownership, etc.
I would strongly suggest that you get on the VED therapy to help with your size problem. Experience with many on this forum has resulted in at least maintaining what they have and in addition have gained back some too.
Read all the posts you can on the VED board under the topics dealing with VED usage, the protocol and there you will find posts from many guys using the VED therapy. It has worked great for quite a number of guys here.
Let us know if there is anything we can do to help in any way.
Old Man
Dear Old Man,
Thank you so much for the quick and very helpful response. I will indeed look into the VED postings and discuss with my urologist when I see him later this week. Please let me know if there are any specific devices you recommend. Thanks again and I appreciate your understanding.
Acetyl
Acetyl:
Your situation is somewhat similar to mine, in that the shape changed somewhat quickly (3 months) when I began to have difficulty attempting penetration. The size was reduced by the curvature by about 1-1/2". Unlike your self, I experienced no pain and intercourse was limited to missionary only. I consulted with my Uro and he put me on a 6 month tour of Trental with no results. I was referred to Dr. Lue you preformed the 16-dot procedure.
I'm sure as with others in this forum, we share your in concern and frustration. I wish you much lucky and wisdom on your journey to overcome your situation. You are bless with a loving wife and that makes the path bearable.
45acp
Acetyl,
Loss of length and girth seems to be a common denominator for men with peyronies. I experienced the same thing and I totally agree with Old Man. The VED is your best chance to regain both. I am in the 10th week on the 26 week protocol and I believe it is helping me with my overall size. I'm not seeing any improvement with curvature yet, but I am very hopeful.
GS
Acetyl:
The VED that is most recommended for use by guys on the forum is the three cylinder manual model available from the link shown below:
It is the Vitality three cylinder OTC manual model as shown on the web page for the Fitzz Company. That company gives a discounted price to forum members, but you have to purchase it from Fitzz as shown on the home page of the link below. The base package is for only the basic VED package, but you add the two cylinders shown in the item description.
If I can be of further assistance with your decision, just let me know by PM or post here.
http://www.fitzz.com/Vacuum-Therapy-System-Recommended-for-Peyronies-Therapy_p_1983.html
Old Man
Acetyl:
I agree with GS, loss and girth seems to be common. I'm in the 7th week of the 26 week protocol and have experienced better erection quality and length appear to be improving. Like GS, not seeing any change in curvature yet, but I'm in it for the long haul. The 3 cylinder VED is working well for me.
All the best in your journey.
Blade
I've completed 3 weeks of the 3 cylinder protocol. First few days I stretched 5 inches. I thought it was 6. It looked so nice being straight in the tube, I thought it looked like it used too. When I actually measured it was five. It now stretches to 6-3/16" when fully pumped. I have no idea if it has increased in length when erect. I have no idea how to measure a penis with a bend. I guess I could hold it straight and measure it. Before peyronnies I was 6" erect. No idea what girth was but from where the bend is to the head it has lost girth. Bend is unchanged when erect. I'm in it for the long haul. Hoping I get some straightening. Either I will or I won't. I'll deal with the reality. The area where the bend is still does not make contact with the A tube nor the b tube when fully pumped. I first discovered I was bent during the Thanksgiving or Christmas holidays. of 2008. I'm also taking ACL, , L-Arginine and vit D3/K2. I had to quit taking vitamin E. It's too hard on my digestive system.
Rickmud:
Be sure you follow the protocol with regard to the cylinders for the specified week. The program is designed to give the penis different pressures as different times to allow for fullest expansion and length, etc.
If you need any help with the protocol, just let us know.
Old Man
Old Man, Thanks for the advice. I've been following the three cylinder protocol to the letter and will for at least a year. Not sure how long I can take the supplements but plan on hanging for awhile. I'm scared I'm not using enough vacuum pressure and at the same time scared I'm using to much. No problems so far. I'm hanging with your advice hoping to recover from this. Thanks to all you guys for hanging in here with us!
Rick
16 months with peyronnies.
Rickmud:
OK, you might want to try adding a bit more vacuum on a trail basis one day at a time to see you can tolerate higher pressures if you feel you are not using enough. If you feel any pain or discomfort, cease doing it, etc.
However though, less is much better than too much with VED therapy. The daily stretching on a milder basis will produce good results better than higher pressures which may cause further trauma.
Keep the faith and time will tell about any good results. At least, the exercise of the erectile tissue will keep it more healthy.
Old Man
Thank you to those who posted responses to my question. Much appreciated. I discussed VED therapy and pentox with my urologist. he set me up with a "Soma Correct" consultation and said he it couldn't hurt. the soma correct with three cylinders appears to be the same device sold by the Fitzz company. not sure if insurance will cover it but will compare costs with that offered by Fitzz. As for penox he said there was no data or clinical trials on it so he was skeptical. I said there appeared to be a lot of anecdotal evidence at least on this forum and that urologists have been using it in clinical practice since 2001. He said he would gladly give me prescription if I wanted to try it, which I am doing. also based on some of the forum discussions I'll also start l-arginine. thanks again for the advice and responses.
Acetyl
acetyl:
The Fitzz three cylinder Vitality OTC manual model is much lower priced than the Soma Correct. The Soma Correct is no longer made by the Augusta Medical Systems according to my information. It did not pass FDA's requirements for Peyronies Disease therapy. It was replaced by the Somaerect which is prescribed for ED only now by urologists around the country.
The Vitality VED does not require an RX. A discount is given to members of this forum by using the link posted in the VED board section of the main forum.
Old Man
Quote from: BrooksBro on February 10, 2010, 06:13:14 AM
Yes, see the best urologist you can find in your area. It is worth the office visit cost. If the major university near you has a medical school, seek out their urology department. If any urologist tells you "take vitamin e and come back in 6 months," then he's NOT the one you want treating you. That is the same as a primary care physician saying "take 2 aspirins" and come back if it's not better. If the doctor had your symptoms, is that what he would do? NO! He would find a specialist and get some real medicine and treatment.
At age 22, you've got your whole life ahead of you. Don't spend another day worrying if you have a problem, go find out. Life's too short.
You have probably noticed most of the guys here developed this later in life, usually in their 50s-60s. Even then, it can be a big mental concern. At your age, you have other things to be concerned about. GET TREATMENT NOW.
Your suggestion RE going to a urologist at a medical school might be good advice in general, but not always correct. I went to a doctor who is the chair of the urology dept. at a local medical school and he gave me the old "take 200 mg. Vitamin E and come back in 6 months" routine. He barely touched my penis and offered no further testing. I've been in pain for 4 years and still searching for a decent urologist and I live in a major metropolitan area. It's just extremely difficult to find a good uro who knows what to do. Try to find a doctor who specializes in male sexual function.
Fred
" If any urologist tells you "take vitamin e and come back in 6 months," then he's NOT the one you want treating you. That is the same as a primary care physician saying "take 2 aspirins" and come back if it's not better. If the doctor had your symptoms, is that what he would do? NO! He would find a specialist and get some real medicine and treatment. "
After reading many posts re: above and others all over the boards, I am wondering if Vitamin E is detrimental to the heart in the long run. Since my urologist was the one that diagnosed me with Peyronies, he then told me that I could try Vitamin E capsule or just rub it in with a Vitamin E cream. After seeing a specialist, he recommend a lighter dose because of my heart condition.
When I went for my semi annual heart check up with my cardiologist and told him about my taking Vitamin E, he told me I had a choice between my heart and my "erections".
Why are doctors prescribing Vitamin E when it could have a negative affect on their heart?
I tool Vitamin E from 1995 until I had heart stents in 2006. Before the heart stents my cardiologist hand no problem with me taking 800IU of E a day.
After the stents he put me on Plavix and stopped the E.
Before my implant 10/08 I was in the hospital (7/08)and getting warfarin shots and then the pills up to a week before my implant. Now I take no blood thinner.
The good side effects of the warfarin was better blood flow to the glans.
Jackp
Dr. Levine had said that massive amounts of vitamin E over a long period of time MAY cause heart problems in older patients. I am younger, but was taking 1600 mg a day which he said was WAY too much. He said if people want to take it, limit to 400 mg.
For several months I was taking a lot of vitamin E, well over 2,000IU per day. And it was the good stuff, natural mixed toco's, etc. I saw absolutely no lasting benefit from it. In hind sight, I really couldn't recommend anyone take over 400IU per day. Its not only a question of safety, but a question of efficacy. Why? If it provides little benefit and there are other things like even ALC that provide far more benefit, why waste time and money on something like vitamin E. Personally, I would recommend anyone with Peyronie's pull out all the stops to get their hands on Pentoxifylline IF they can manage the side effects. In comparison, vitamin E of any kind is totally useless. Note, I said "in comparison" before flaming me for saying this. In the case of vitamin E, you will probably derive as much benefit from 400IU as from far more and you won't have to deal with the potential side effects. At this point, I am taking 800IU of vitamin E per WEEK. There is some evidence that vitamin E does work synergisticly with Pentox, but I would question the need for more than 400IU per day. - George
George,
I have taken Pentox for a couple of years now, any benefit in continuing? I have noticed no change, but no flair ups either!
Jayhawk
The benefit of Pentox is NOT that it makes things better. Its that it keeps things from getting worse. That amounts to huge value and a lot of people refuse to acknowledge that value. A lot of guys just continue to go downhill because they won't accept anything if it doesn't "fix" the problem. For me, something that keeps things stable has huge value. I only wish I had started with Pentox at the very beginning. If I had done that, I would still be normal now. In the Oral treatments thread, skunkworks references a study dealing with a combination of Pentox and Vitamin E. Its an older study, but one I had not seen before. Its really very interesting and goes a little further than past studies noting synergy between the two. It has really got me rethinking increasing my Vitamin E to a daily dose. I really like the cumulative effect of Pentox and LDN. I will likely add Vitamin E back into that mix. - George
George,
For me it improved my situation, so it can make peopel better. I do think the longer you wait to start it, the less chance you have of any damaged tissue reversal.
Jayhawk,
I would stay on it as well, I never got worse while being on it, but I did when I wasn't on it. Why not keep taking it until you can try xiaflex injections, kind of a hold over for awhile. I mean if your prescription hasn't run out, you can still get it, and its not cause you any bad side effects, why not?
Comebackid
Quote from: chiguy on April 25, 2010, 10:40:44 AM
Dr. Levine had said that massive amounts of vitamin E over a long period of time MAY cause heart problems in older patients. I am younger, but was taking 1600 mg a day which he said was WAY too much. He said if people want to take it, limit to 400 mg.
In the video of Dr Levine (posted here someplace) I believe he says there's no research to support it's efficacy. He does recommend pentox, however.
Fred,
Staying on vitamin E for long periods at high doses is bad, it can harden your arteries.
Comebackid
Comeback
I disagree. I was on Vitiamin E from 1994 until 2006 with no ill effects. Any medical literature to back up that statement?
Jackp
JackP:
On today's news there was a heart specialist doctor stating that a study for many years now reveals that excessive amounts of vitamin E intake per day can and will cause hardening of the arteries.
Wish I had known that about 50 years ago when my uro put me on excessive amounts of vitamin E up to 1600 I.U.s per day!! Wonder how it is that I have reached the age of nearly 81 without any major artery problem????
Old Man
Old Man
I have seen Vitiamin E debated for years and heard both sides. My heart doctor said it made no difference to him I could take it for the peyronies.
After the heart stents in 06 I was put on Plavix and taken off the E because of too much blood thinner. I was on Plavix for about 14-16 months and then in 8/08 with the surgical accident I was put on warfarin until 7 days before my implant 10/23/08. I have not been on any blood thinner since.
Note: The warfarin side effect was a partial erection and better feelings in the glans. Now 18 months after my implant and on no blood thinners most of the feelings in my glans has returned. Todd Doran PA-C told me at my one year check up that daily Calais (5mg) could help with blood flow to the glans. I decided not to take it because I had most of the feelings back on my own. Why? I do not know but my guess is that the CC's are no longer trying to take away blood from the glans to support an erection.
Just my 2 cents worth.
Jack
Jack:
Yeah, I know the feeling most of us have about all the so called studies that show up every now and then. Most all of the well used OTC meds have had their share of hits by the powers to be in the research field.
I know that they mean well, but some of the studies just don't take into consideration the whole picture, especially about the vitamin family. We all know that vitamins make up the better part of our bodily functions when it comes to keeping it well and operating in the safe zone.
I totally agree with you about the vitamin E and its effects. If it had been a problem for me, don't think that I would have reached my ripe old age of 80 plus!!!
Old Man
Quote from: Old Man on April 29, 2010, 09:47:05 AM
I know that they mean well, but some of the studies just don't take into consideration the whole picture, especially about the vitamin family. We all know that vitamins make up the better part of our bodily functions when it comes to keeping it well and operating in the safe zone.
There are studies showing multivitamin use increases the chance of both prostate and breast cancer.
And just as many showing that they can decrease the risk.
http://www.virtualmedicalcentre.com/news/questions-surrounding-multivitamin-use/14897
Supplementation is shaky, better to eat vitamin rich food.
Why do some people take a lot of Vitamin E for years and never have problems? Why do others encounter problems with Vitamin E? A lot has to do with Vitamin K since Vitamin E and Vitamin K are joined at the hip. If you take large amounts of Vitamin E, it will have the effect of depleting Vitamin K. Low levels of Vitamin K ARE KNOWN to cause vascular calcification AND bleeding problems. Thus, IF a person taking large amounts of Vitamin E is also eating food that is Vitamin K rich AND/OR taking Vitamin K supplements that are effective AND/OR genetically predisposed to maintaining healthy Vitamin K levels despite challenging environments, they WILL LIKELY be largely protected from negative cardiovascular damage from excessive Vitamin E. So my advice to anyone taking large doses of Vitamin E has ALWAYS been to take Vitamin K along with it. - George
Jackp,
I saw that in WebMD. It doesn't mean everyone will have that happen to them. As george points out vitamin K has a lot to do with offsetting vitamin E levels effects. It could have been that you were eating foods rich in vitamin K. I wouldn't make up such a statement unless I clearly remembered reading, in the last decade I've probably read 1,000 pages of research on peyronies disease, most in the first 5 years. I'm not convinced vitamin E will do anything, its just a feel good treatment an unknowledgable urologist can prescribe to make the patient feel good. It shows no evidence of addressing the underlying problem of inflammation, like pentox does. I took about three different brands of it for six months each, it did nothing for me.
Comebackid
The major value of Vitamin E, if there is any, would be related to its potential synergy with Pentoxifylline. There are multiple studies out there that indicate a possible rather powerful synergy between the two. Since I am again taking Pentoxifylline, I am ramping up the Vitamin E in hopes of capturing some of this effect. I also take two doses of a potent Vitamin K supplement each week to counter any detrimental effects of Vitamin E. - George
Comeback
When my peyronies first appeared in 1995 my urologist at the time put me on 400IU of Vitiaman E three times a day and Potaba.
About 18 months the curve straighted but I lost a lot of length. I asked the doctor if there was anything else he could do and he basally said no. I stopped the Potabe at about 18 months but continued the E at twice a day until heart stents in 06.
During that time I went to two different heart doctors because of sleep apnea. They both said the E was fine. My urologist also encouraged me to stay on the Vitiamin E.
Like you I have done years of research on not only peyronies, but ED, venous leakage and corporal fibrosis and low testosterone.
Vitamin E may be a conservative treatment and it takes many months to work. Pentox may be a better treatment now but with my heart condition now I doubt my doctor would approve of pentox.
I have been off all blood thinners since a week before my implant 10/23/08 and doing well. My last visit to my heart doctor was in January and had a echo gram. He said my heart now was doing just fine and reduced my BP meds to one instead of two.
Note: All the time I was on vitamin E I was also using testosterone gels for my low Testosterone. The gels make your blood thicker than normal. When my doctor switched me from gels to shots my blood returned to normal. My research on this indicates that guys with peyronies and on gels on to switch to shots every 7-10 days. But this is a subject for a different forum.
Jackp
I noticed this in the my histories section: https://www.peyroniesforum.net/index.php/topic,1212.0.html I know it's not advised to reply there, so I thought I'd set up a thread here instead, and post my reply as opposed to private messaging him. That way others can contribute their thoughts too. I've PMd the poster to let him know that my reply is here.
My reply:
"It seems like traction was 'some' use to use. If it's at all possible maybe it's worth sticking with that option. VED is another option. Many urologists don't know about it because there are very few studies available. However, just last month a study by a very reputable institution was released:
http://www.ncbi.nlm.nih.gov/pubmed/20438558
Sure it's not exactly a miracle worker, and for some men it won't help at all, but for others it will, so it's an option.
Many men combine a mechanical treatment (VED, traction) with the PAV cocktail, which is basically (Pentoxifylline, L-Arginine and Viagra). There is good sceintific theory behind using this combination - the vaigra can be exchanged for something like cialis is you like, since it achieves the same purpose - strong erections, aiding circulation into the penis etc. Again, some men won't have any luck, but there are studies backing up pentox as being useful to men with peyronie's:
https://www.peyroniesforum.net/index.php/topic,1004.msg23294.html#msg23294
I would advise you to combine this oral combination, with VED or traction for a year. AT that time if there is no improvement it would seem that 'perhpas' surgery is the best option. If there has been improvement, maybe surgery would not be required, or if it was there would be less length lost due to improvements made."
hi all -
ive been on pentox for 2 years now and been doing VED for about 18 months and guess what - theres been no FUC**ING improvement - my dick is still FUC***G bent and its about 30-40 degrees up - i still get pain and i think that its all BS and a waste of fu**ing time!!!
You just have to sit it out and wait for some miracle cure that will never fuc**ng happen!!!
Just suffer with this and LEARN YO LIVE WITH IT!!
Thats my 2 cents for today!!
I understand your distress iceman, but these methods can help some people. Even if a person intends to undergo surgery for instance, it is definitely worth them lending a year to the treatments listed below to see if they see improvements. There is little to lose and something to gain. There is science and member contributions to back up these treatments, though I appreciate that they are certainly not always effective. I share your concerns about ongoing pain. There seems to be a subset of peyronies sufferers with longterm ongoing pain issues. Some urologists seem to put this down to nerve damage, but really I have no idea. It is very frustrating, that much I know.
im just a bit frustrated - i actually believe that the pentox has helped the dents and curves a bit - perhaps it could be worse if i wasnt on it - didnt really think of that angle
Iceman - with regards to Pentox, it is not put forward as a cure. It is a drug that if taken in time can stop the condition getting worse, help with pain, and help with erectile function.
I have not read your posts so I do not know your history.
Are you getting nocturnal/morning erections? If not this is the first thing you should be dealing with. Take viagra every night if you have to, or better yet try LDN.
You've tried traction? For how long and how many hours per day?
You've tried the VED? What were your results?
What is your lifestyle like? Diet? Exercise? Do you smoke?
Please try to reply with concise, factual unemotional replies. I know this is something you are very emotional about, but you need to control it for now.
skunkworks - ok:
1 ) ive been on pentox x 3 tablets per day for the past 2 years
2) i do get morning erections all the time now
3) ive been doing ved on/off for 2 yrs now say 3-4 nights per week for say 15-20 minutes
4) i exercise and eat well and am i believe quite fit
so what do you think I should be doing as well - also Ive taken every med on the site here including 6 months of neprinol - so i think ive tried everything - im just a bit dissapointed about the ved outcome - i did have higher expectations - your thoughts...
Well my first suggestion would be to go and read every post by old man about VED usage. Maybe even pm him and ask if he'll help make sure you are using the VED exactly as it should be used. Then follow the protocol religiously, do the full 26 weeks exactly as directed without missing a day.
I've looked at some of your earlier posts though and you say in them that VED had helped?
I'd also recommend a traction device, it has more studies showing improvement in curvature than the VED, but does take a lot more time per day.
If after putting around 1300-1500 hours into the traction device you still have a penis that is too bent for intercourse, then you'll want to start thinking about surgery.
This question obviously goes against the use it or loose it thinking, but has anyone tried PAV cocktail and plain old rest. I mean let your penis just rest for a year... no sex, masturbation, VED, traction, anything. (I know, I know, easier said than done) Let nocturnal erections do their thing...
I only ask as for me masturbation can be painful, and pain usually means trouble and inflammation. Given the low blood flow to the penis when flaccid, of course healing will take longer than to an ankle or other body part. Maybe pain is our body's way of saying leave me be for a while...
Just throwing it out there for discussion.
SSmithe
per the anecdotal evidence on our forum and remarks to me from my urologist, "leaving it alone" for any significant length of time would probably make the situation worse.
Recently, I visited my urologist, who sees a relatively high volume of Peyronies Disease patients, for a six-month Peyronies Disease check-up, and he shared some of his observations with me concerning the issue you raised here. (aside - before my appt in the afternoon, he had already seen five Peyronies Disease patients earlier that day).
He told me he strongly believes that many of his patients do not take "action" early enough, which allows the scar to damage the penis in a flaccid, unstretched state, which in his opinion, can cause significantly more deformity than if the patient had "used it." He shared with me that patients come to him after having done nothing for a "long time" and because of their depressed state, had not engaged in much, if any, sexual activity, including masturbation. He told me he believes that continuous (i.e., at least daily) stretching of the penis mitigates deformity damage. He is a strong advocate of the VED, or at the very least "using" the penis with a partner or via masturbation. He told me, unfortunately in his opinion, that many men do not want to "deal" with the VED, stay depressed, and do not get their penis stretched out which causes a worse deformity than otherwise.
His opinions seem to parallel many of the observations of several long-time veteran posters and my own personal experience where I took almost immediate action to get daily engorgements with the VED (which, help to "boot-strap" me mentally, which allowed my natural erections to become better due the physical exercises and improving mental state - and, NEVER underestimate the necessity of an almost blissful mental state to have exceptional erections, IMO....tough to achieve when you are devestated about your condition....this is where the VED, IMO, can bridge a person over to a better mental state b/c the person's physical state improves).
However, I imagine that if one experiences pain then that may or may not change the treatment plan. From what I've learned about Peyronies Disease, pain, especially if it's experienced early, is not unusual, but the intensity and length of this symptom varies. Also, no pain may not equate to no inflammation - see many posts by George999. I never had much pain at all, only what I would describe as some occasional "discomfort" during the first six months or so. Of course I'm absolutely no expert with this condition...or any health condition, but in light of that reality, I agree with your proposition that generally, bodily pain is the body's way of telling you not to do what causes the pain...
...but, I'm thinking that Peyronies Disease may be an exception of some sorts (like physical therapy, right?). In other words, use your penis as much as physically possible until the pain says stop - I'm thinking maybe try to distinguish between discomfort and pain, or funny feeling and pain, but, I'm thinking out loud on this point.
maybe in your case "doing nothing" is an extreme reaction?? Maybe a VED could be used to gently engorge your penis in a much more controlled environment as opposed to getting an erection...this way you could get "some" stretching....so, maybe you don't have to look at it as an "all or nothing" type deal. I know my urologists believes that it is healthy to have regular ejaculations, for many health related reasons, so, by not using it, this may be one healthy benefit "doing nothing" deprives the body.
CF
Note to all:
Just read Cowboyfood's post below. I totally endorse his thinking 110%. Why? Because during my long term bouts with Peyronies Disease, I have experienced just about every symptom that has been named on this forum. I have tried "leaving it alone'' for months and in one case over a year only to realize that things were getting worse.
So, I am an advocate for the term "use it or lose it'' as has been stated many times on previous posts on this forum. The daily engorgement of blood flow into and out of the erectile tissue can and will help with keeping ones penis more healthy. As Cowboyfood says, doing something can and will help with ones mental attitude and psyche. Keeping a good frame of mine about Peyronies Disease is the one thing that will help most. Believe you me, I went through many trials and errors to learn "the hard way'' that doing nothing is definitely not the way to go with Peyronies Disease problems
So, IMHO, the better way to go is get busy, do something - whatever you think might work for you, don't just sit and wait. The earlier you get into some form therapy the better off you will be in the long run. Waiting will only cause more problems that you may never recover from or get any relief at all.
The above is just my personal observations from having Peyronies Disease on a long term basis!!!
Old Man
Wise words. The 'leave it alone' advice some people receive is so bad it's offensive. Combined with the other common occurance you mention, where many men are too depressed or embarrassed to seek advice, we have vast numbers of peyronie's sufferers who are missing the biggest windows of opportunity to improve their condition.
A point has been reached where there is patient experience of success using treatments AND studies to back them up. People who take Pentox and use either VED or traction are taking very positive steps to limit the damage this condition can cause.
Quote from: newguy on June 05, 2010, 09:45:52 AM
... where many men are too depressed or embarrassed to seek advice, we have vast numbers of peyronie's sufferers who are missing the biggest windows of opportunity to improve their condition.
Newguy,
this is exactly the situation my uro described. In his opinion, it's unfortunate and not unusual for men to be too embarrassed combined with depression that it prevents them from seeking help, and instead withdraw....resulting in a lost window of opportunity to effectively treat the condition -- early action with the VED and Pentox. My uro likes to prescribe pentox, or something similar depending on a patient's health status.
Funny, he told me to feel free to go from daily VED use to a lighter maintenance schedule if I wanted to, exactly the same advice that Old Man and Angus have been prescribing here for years. Of course, I informed him that our forum vets concur with his advice.
CF
CBF:
Maybe some day they will listen!!!
Old Man
I think what you are all saying regarding "use it or lose it" is probably true, but my pain was so bad during the first year It was impossible to "use it". Even now 4 years later, I still have almost daily pain and every time I start the VED therapy the pain increases.
From all I've read, my case seems to be the exception. In fact, I recently contacted one of the best specialists in the field of male sexual function (a doctor that is often praised on this forum) and I was told that having pain for this long is unusual, but not unheard of. I was also told that this Dr. did not treat "predominate pain syndromes without something surgical to correct (ED, curvature, etc.). I was told that my case was a "rare problem to this degree, but clearly known to exist" and that he would be back in touch after the AUA conference which was held last week. In fact, he said he would speak with Dr. Levine about my case (while at the conference) and get back to me. Rather discouraging but understandable. Hopefully, I'll get some better news next week after he's back to work.
Fred
Thanks for your input on this. For the record, I was not advised by my URO to leave it alone. He recommends usage for sure.
I was just diagnosed by my family doc a few weeks ago. I have a lump but no other symptoms at all. My doc printed out a few pages from Wikipedia and did not even offer to refer me to a Urologist. He said nothing can be done til it get's worse. He did not suggest that there might be ways to keep it from getting worse.... FRUSTRATING.
It's been suggested by people on this forum.... that someone might be able to recommend a Urologist with Peyronies Disease experience if I reveal my location. I'm in Winnipeg. (Manitoba, Canada)
To be honest - reading posts on this site has only made me more concerned/worried about the future, NOT reassured. Does anything work? Does it ever go away on it's own? Is there anything I can be doing now -- while I figure out how to get a referral?
Your thoughts would be appreciated.
Your doctors advice was unhelpful. There is no golden bullet, but as with any medical problems it's better to seek treatment earlier than later. Until a while go there had been very few positive peyronie's treatment studies, but a couple are out there now.
You should start taking pentoxifylline. Evidence of its usefulness is here (https://www.peyroniesforum.net/index.php/topic,772.0.html) and here (https://www.peyroniesforum.net/index.php/topic,1004.msg23292.html#msg23292) . Print those off and take it to a urologist. If he refuses to prescibe it, he's not a good urologist. It's cheap, has few side effects and may well be of some use to you.
You should also explore using a medical grade VED (vacuum ercetion device). A recent study (here (https://www.peyroniesforum.net/index.php/topic,1218.msg25837.html#msg25837)) shows it to be of use for many peyronie's sufferers.
Hopefully somebody can point you in the right direction regarding good canadian urologist.
I got the same "treatment" from my urologist here in NY. Even later after seeing two specialists in the Mens Sexual Health field, they told me that there was nothing out there for me unless it got worse! I finally listened to the Old Man who told me to order the VED and begin the Protocol.
While you are waiting and looking for a specialist, order a VED and begin the 26 week Protocol if the doctor told you that you had Peyronie's. The VED Protocol helped me physically and mentally.
ymn
If you are in Winnipeg, you might consider journeying down to Chicago to see Dr Levine. He is a noted Peyronie's specialist. Probably not covered by Heath Canada of course, but it would probably not be extremely costly. You would need a referral from your uro. You would need to be firm and direct in requesting one as in: I want a second opinion from a subject matter expert. On the other hand, hopefully some fellow Canadian can PM you with the name of a more up to date doc in Canada who prescribes Pentoxifylline. They have got to be out there, its just a matter of finding them. - George
I have sent Sheldon a message and can direct him to a Peyronies Disease specialist here in Ontario. Also far from Wpg. but possibly his office can supply Sheldon the name of one of my Urologist's contacts closer to WPG.
Thanks Mike67,
I was going to suggest to Sheldon that he contact you but you beat me to it ;-)
I with my (now former) urologist had been more aggressive when I first noticed a small (pea-size) lump. All I got from him was "take vitamin E, Rx anti-inflammatory med, wait and see." While I waited and watched, I saw the lump grow. Not that it would have done that with treatment, but now it is too late to ever find out.
You have received good advice. It is up to you to follow up with someone knowledgeable and willing to treat your condition. It can get worse, and there are enough personal reports posted in in the different boards (Improvement is just one) that it can get better.
There IS hope, and that hope is found in using the time-proven treatments and medication.
"Thank you for the response Tim, and to everyone else who has reponded and taken it upon themselves to private message me, the support on this forum has been phenomenal.
Tim, could you explain to me how the VED is able to remodel tissue? Does the negative pressue cause the plaque to be broken up? I'm still foggy on how exactly this works."
The VED is to remodel by stretching, much the same way that progressively stretching out an earlobe can finally allow a larger gauge ring to be placed in the hole.
It is not clear if normal tunica is stretched, or if the scar is stretched, or both. Whatever the mechanism, many of us have maintained or regained length and girth by stretching with the VED. Similar results are now in the literature for the FastSize and similar devices.
"So far the suggestions have been Pentox and Trazodone. I am also considering starting 600mg/wk Testosterone Enanthate, and Proviron 15mg PO QD ....I'm a little hestitant to use an SSRI for erections"
The trazadone is technically an SSRI, but Trazodone acts predominantly as a 5-HT receptor antagonist; the effects on serotonin reuptake is relatively weak. It is a slightly sedating medication that used to be the number one drug for ED until the invention of Viagra. That was because of it's tendency to improve blood flow to the penis. The idea here, though, is that regular erections maintain health of the penis better than not having them (either via blood flow effects or via stretching regularly).
Some here postulate that the VED acts by increasing blood flow - this is speculation. The fact that the stretching devices work as well suggests the effect of the VED is mechanical. And, the amount of stretch from a device is greater than that of an erection - that is the point.
Using testosterone to increase erections is way overkill and runs the risk of causing infertility.
Using GH to get erections is similarly risky, and completely unproven.
I would get the VED to start working the penis without it being tied to your arousal - which is liberating. Many men here report improved libido simply from getting involved in getting better. Vitamin E and PEntox make sense - as does getting a doc to prescribe it!
Tim
I have Peyronies Disease, was diagnosed by my uro maybe a year ago (not even sure of the time line). Started out with an hour glass shape, but it has progressed to about a 40 degree bend, and I fear it may be still progressing. No ED, except for perhaps some psychological. I am almost certain mine is trauma in intercourse due to some particularities that aren't worth going into atm.
edit: Maybe it would be helpful to add that I am currently 33.
I had no idea until I stumbled upon this site that there was ANYTHING to be done. God bless all of you who obviously put time into this.
Normally I would spend more time digesting the contents of the site, but I would like to get started on something.
Ideally I would like to try multiple attacks, nutrition, pentox, VED etc... but am soliciting suggestions.
As far as VEDs, which I would def like to try, what should I get? It looks like the most recommended is currently not available?
Anyone know of someone decent in the Houston area whom I could see? The uro I saw was obviously a joke, and basically said "nothing works, unless it gets so extreme you can't have sex, then we can try the nesbitt (Sp?) procedure"
What else should I be doing (reading, seeing, hearing, learning?)
Sorry for the rambling post, little hard for me I guess (no pun intended).
Jim:
At the moment the Vitality OTC three cylinder manual model VED is no longer available unfortunately. The Vitality OTC one cylinder manual model VED is available from these two sources:
www.fitzz.com and http://www.americandiabeteswholesale.com/-strse-1025/Encore-Manual-Vacuum-Erection/Detail.bok
Open each link and go to the men's health products to locate the above VED. Both are priced about the same and are available without an RX. If you get the one cylinder VED, go the VED board on the home page and select the one cylinder protocol that member JackP has posted in the sticky posts at the top of the VED board page.
Feel free to ask any and all questions about VED or ED therapy and someone will be glad to assist you in any way for answers and/or suggestions.
Sorry that you have joined the "Peyronies Disease family" and hope that you realize some relief in the future.
Old Man
Thanks for the quick response, are there no other three cylinder models worth pursuing?
I should add that Jim pseudonym.
Forgive the multiposting, I usually have better net-etiquette.
Old Man, I have read a tonne of your posts so far (still reading). Some of your posts seem to allude to you having had "bouts" or having dealt with this for a long time.
Do I correctly assume from this that it is the type of disease that you can treat the symptoms, but they will be ever present, and really I am just keeping them at bay?
Thanks again for all your work, you (as well as many people on here) are of that rare breed that put their time, talent and treasure into something that actually makes a difference in the lives of others.
Jim:
Yes, I have had Peyronies Disease symptoms for around 57 years now. First getting them after a sexual encounter going bad at the age of 24. And yes, the symptoms have gone and come back several times over those years. Each bout was overcome by some form of treatment.
The final episode/bout came after my radical prostate surgery in April 1995. I was rendered totally impotent by that surgery. Several weeks after the surgery, maybe months as I wore a catheter for 32 days after that surgery, the curves and bends came back along with some plaque. 12 Verapamil injections only gave me more plague and nodules.
Anyway, I tried many treatments and therapies over the years and finally the VED was prescribed for the impotency. My uro and I worked out the one cylinder VED protocol for my Peyronies Disease that JackP/Angus has put in the VED board under that title. It can be used successfully to overcome Peyronies Disease symptoms if followed carefully and with moderation of the vacuum pressure.
Old Man
Acetyl L-Carnitine - Is 1 gram a day on an empty stomach good enough? Or is 2 grams the only way to go? Should I really be thinking about taking ALA with ALC? I picked ALC over glycine propionyl L carnitine, L- citrulline and just regular old L-arginine because it's what george999 said is the next best to pentox. The reviews for ALC were also awesome on iherb.com and people commented that it's great for a mental boosts which I think I need abit too.
Vitamin E - 400 UI or 800UI daily? Does Vit E deplete Vitamin K which can cause more scarring? Did I read this correctly? probably not... I highly doubt this dose of Vit E can cause any difference.
Trazodone - I'm just gonna start out with a 25mg dose, which is very small. I chose this because it might help my ongoing downer mood and it's great for erections and blood flow. It's also very safe and well tolerated.
FYI, I'm 29, 155 lbs and have not been diagnosed with peyronies. Doctor has even confirmed this by saying he can't see anything wrong and wouldn't even refer me to a Urologist. My penis is achy on the left side, worse at the base but also along left shaft and into the head abit. I also purchased a vitality OTC manual pump system which I plan on using daily at very low pressure, I'm all about slow and steady now.
It's not a bad pain at all, just a low dull ache, my erections are also not painful at all. There is also no banana curve, just alittle deviation to the left side, like a \. I think what caused my symptoms is sleeping on my stomach and hence on my night time erections. Symptoms have persisted for 6-7 years and I hope to eliminate this cronic ache with my plan of attack.
Also one night during sex my girlfriend was going cowgirl style and rocking back and forth on my pelvis and then I heard a loud pop and felt pain and lost the erection. That was not cool and quit sex for one month after that as my erections were weak and it was painful. This aggravated my original problem I think, the same problem I have now.
Very sorry for the long post but just a few general concerns. Once I start this regime, is consistancy a must? Or can I stop taking any 3 of them at any time or should I wien myself off them? I hate the rollercoaster effect with supplements sometimes, will I benifit a consistant steady affect? I hope so... One last thing, are any of these things an anti-inflammatory? I don't want to take anti-inflammatories Cause I'm getting proliferate shots in my sacroiliac joints for lower back pain and don't want to interfer with that.
Thanks so much
In my opinion and experience, taking Vitamin E for peyronies is a waste of time and money. I did 800 IU/day (GNC Isomer E) for neary a year without any improvement. Your experience may be different.
At this point I know of ONLY three oral treatments that have ANY research behind them showing that they help with Peyronies:
1. Pentoxifylline
2. CoQ10
3. Acetyl L Carnitine
If anyone here knows of any others, feel free to add them.
Needless to say these are at the top of my list for treating my disease.
I also recommend repleting Vitamin D to optimal blood levels and taking plenty of EPA/DHA since their is a lot of research backing the general health benefits of these two substances. Everything else is somewhat window dressing. - George
I haven't heard of E depleting K, only of alpha tocopherol depleting gamma tocopherol (both in the E family; unfortunately many cheap supplements only contain alpha).
I would add curcumin to that list, taken in oil. I like olive oil since it's a long chain fatty acid that goes through the lymph system.
Quote from: George999 on September 26, 2010, 11:50:45 AM
At this point I know of ONLY three oral treatments that have ANY research behind them showing that they help with Peyronies:
1. Pentoxifylline
2. CoQ10
3. Acetyl L Carnitine
If anyone here knows of any others, feel free to add them.
Needless to say these are at the top of my list for treating my disease.
I also recommend repleting Vitamin D to optimal blood levels and taking plenty of EPA/DHA since their is a lot of research backing the general health benefits of these two substances. Everything else is somewhat window dressing. - George
I'm staying away from the pentox because I don't think I have peyronies (knock on wood) and suppressing my immune system would achieve no benifit for me. Also it sounds like an anti-inflammatory, likewise the C0q10. But if things progress or I'm not happy with my attempts then I can always reconsider them.
I'm going to check out the EPA/DHA now, is that fish oils? Can you recommend a product for EPA/DHA please George? Preferably from iherb.com as that's where I'm ordering my ALC from.
I think I'm going to make an appointment with a good Naturapathic doctor for a complete blood workup for Vit D and everything else. What would you suggest George for a complete blood workup?
Brooksbro - Yea, I'm not placing much hope in the Vit E either, but already purchased a huge bottle for like 20 bucks so why not.
Slowandsteady - What is curcumin? Can I get it off of iherb.com? What is it good for?
Thanks for the help everyone
CoQ10 in the study dealt with Early Chronic Peyronies Disease.
I assume the definition of this is still in the inflammation phase - right?
Is there any value in trying CoQ10 in longstanding Peyronies Disease anyone?
Quote from: slowandsteady on September 26, 2010, 12:24:34 PM
I haven't heard of E depleting K, only of alpha tocopherol depleting gamma tocopherol (both in the E family; unfortunately many cheap supplements only contain alpha).
Quote from: http://www.ncbi.nlm.nih.gov/pubmed/15213041High-dose vitamin E supplementation increased PIVKA-II in adults not receiving oral anticoagulant therapy. The clinical significance of these changes warrants further investigation, but high doses of vitamin E may antagonize vitamin K. Whether such an interaction is potentially beneficial or harmful remains to be determined.
Quote from: http://www.ncbi.nlm.nih.gov/pubmed/16857056There appears to be a tissue-specific interaction between vitamins E and K when vitamin E is supplemented in rat diets.
Quote from: http://www.ncbi.nlm.nih.gov/pubmed/19019024The mechanisms by which vitamin E interferes with vitamin K activity, especially blood clotting, are not known, but hypothetically this interference may involve metabolic pathways.
Quote from: http://emedicine.medscape.com/article/126268-overviewAn increased risk of bleeding has been observed with coadministration of vitamin E and warfarin, with an increased PT due to the depletion of vitamin K–dependent clotting factors. This does not occur in healthy individuals with normal vitamin K levels.
I could note more examples but hopefully the above will suffice. The whole issue is poorly understood, but there are multiple problems associated with Vitamin E intake that magically disappear when Vitamin K is added to the regimen.
Quote from: crashbandit on September 26, 2010, 02:35:09 PM
I'm going to check out the EPA/DHA now, is that fish oils? Can you recommend a product for EPA/DHA please George? Preferably from iherb.com as that's where I'm ordering my ALC from.
Nordic Naturals is generally the highest regard brand in fish oils. The iOmega brand also looks good to me. You want something that is highly concentrated AND clean. I am currently using the Life Extension brand. Iherb may carry that, I don't know.
Quote from: crashbandit on September 26, 2010, 02:35:09 PM
I think I'm going to make an appointment with a good Naturapathic doctor for a complete blood workup for Vit D and everything else. What would you suggest George for a complete blood workup?
My suggestion would be that you follow the advice of the Naturapath. That person will be better equipped to suggest possibly useful testing than I am. In general, in terms of follow up treatment, I see nutritional supplements including herbals, hormone therapy, and proven off label use of prescription drugs as *potentially* beneficial treatments. Acupuncture less so and I would avoid homeopathy which I see as extremely theoretical and lacking of evidence. But getting your serum levels of Vitamin D up to 40-60ng/ml should be VERY beneficial for you.
Quote from: UK on September 26, 2010, 02:46:08 PM
CoQ10 in the study dealt with Early Chronic Peyronies Disease.
I assume the definition of this is still in the inflammation phase - right?
Is there any value in trying CoQ10 in longstanding Peyronies Disease anyone?
I can only say that my case is far from "Early Chronic", and I am seeing clear benefit. Remember, not all of those in the study benefited, so benefit is not guaranteed. But SOME in the study clearly did benefit which make CoQ10 a rare opportunity for *possible* benefit. The Ubiquinol form is pretty much mandatory for those over forty since the older one is, the less efficient their bodies are at converting Ubiqunone to the biologically active or "reduced" form which is Ubiquinol. CoQ10 is an essential factor for cellular health and thus for tissue healing. Older people tend to be deficient in it for the very reason cited above. Certain prescription drugs are also notorious for interfering with it and many of these just happen to be commonly used by guys who contract Peyronie's. I see a potential connection here which makes me all the more excited as to the long term healing potential of Ubiquinol. Its readily available without prescription in much of the world, but, alas, it is also very expensive. But the research, limited as it is, is still there, which makes it a no brainer for me. Your mileage may vary depending on what individual factor are involved in your particular case of Peyronie's disease.
Point taken on the E-K interaction, though again the researchers are using alpha tocopherol by itself. It is certainly a good reason in my mind to avoid taking alpha tocopherol by itself. I'm switching to palm oil (https://www.peyroniesforum.net/index.php/topic,1355.0.html).
Vitamin K comes in K1 (phylloquinone, mostly from plants) and menaquinone-4 (mostly from animal sources like brain, marrow, and organ meats; also mk-7 from fermented vegetable sources). It may be the case that K1 is only important as a precursor for bacterial fermentation to K2-MK4 in the gut. I take mk4 daily and mk7 weekly and eating leafy greens.
I think it likely that all of the oil soluble vitamins (A, D, E, and K) interact (see discussion here (http://blog.cholesterol-and-health.com/2009/04/tufts-university-confirms-that-vitamin.html)) in complex ways that aren't understood yet.
Quote from: zeppo on January 30, 2010, 06:58:34 PM
Old Man,
Thanks for your reply to my post. I have read about Dr. Herazy's manual stretching method. Is there any way to find out if, (or how well), it works? I'm guessing that some
of the forum members have tried it.
Thanks,
Zeppo
I'm doing it
sangha:
OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?
Old Man
Despite 2 yrs. of recommended supplements (including coenzyme q10 for the past 4 weeks) things are deteriorating. My unit is very sore all over with an erection. No ED problems. If anything it seems too hard and I can feel the heat from Inflammation.
My online ordered Pentox should be arriving any day now. I hope it makes it through customs.
Quote from: Old Man on October 20, 2010, 10:14:27 AM
sangha:
OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?
Old Man
Been a two months, bit early really but some improvement seems to be there. I'm combining it with Genesen Acutouch pens. I've used them to work on one scar which seems to be changing for the better so far but you know how difficult to measure these things are.
So, you are currently taking 100mg of Ubiquinol twice a day and it is not seeming to be helping you? - George
hornman - Sorry to hear about this. Your plan to get on pentox is a very good one. I say stick with the coq10 too. A month might be too short a period to know if something is useful.
Thanks Newguy. I'm going to stick with it for at least a year.
George - Actually I have been taking 50mgs ubiquinol twice a day and 100mgs ordinary Q10 twice a day.
Do you think it would be worth it to try upping the ubiquinol dose? It looks like they usued ordinary Q10 in the study.
I would try 100mg Ubiquinol 3X/day for a month and see where that gets you. I experienced pain relief very quickly with Ubiquinol, so either it will work for you or it won't. But I wouldn't fool around with Ubiquinone at this point if it is not getting you anywhere this regard. In the long term, if you are under 40, you should probably be able to get along with the Ubiquinone, over 40 Ubiquinol is the only way to get there. But even if you are under 40, your body MAY not be successfully converting enough Ubiquinone, so I would give the Ubiquinol a one month try just to see what happens, then you can make a further decision from there. - George
Quote from: hornman on October 22, 2010, 07:59:13 AM
George - Actually I have been taking 50mgs ubiquinol twice a day and 100mgs ordinary Q10 twice a day.
Do you think it would be worth it to try upping the ubiquinol dose? It looks like they usued ordinary Q10 in the study.
OK George. I'll give it a go. I'll let you know how I do.
Incidently, I did experiance a turn for the better with a bleeding gum problem so I think I have been absorbing at least some of the the Q10.
Thanks,
Bill (Hornman)
Quote from: sangha on October 21, 2010, 08:18:33 AM
Quote from: Old Man on October 20, 2010, 10:14:27 AM
sangha:
OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?
Old Man
Been a two months, bit early really but some improvement seems to be there. I'm combining it with Genesen Acutouch pens. I've used them to work on one scar which seems to be changing for the better so far but you know how difficult to measure these things are.
Can you explain your stretches in detail please? I'd like to possibly try them. Thanks
Quote from: crashbandit on October 24, 2010, 03:24:50 PM
Quote from: sangha on October 21, 2010, 08:18:33 AM
Quote from: Old Man on October 20, 2010, 10:14:27 AM
sangha:
OK, sounds like you have had success with the stretching method. Would you like to give your experience with this in somewhat detail so that the members on the forums could have the benefit of it?
Old Man
Biggest problem is that anything I do has no Baseline to measure against. As well l am trying more than one treatment. I really do wonder sometimes if this condition just takes it's own course and we go with it. I have not read the fine print on this forum so won't mention names but bought a DVD on manual (by hand) stretching because it sounded sensible. Given that I didn't know what if any trauma caused it, l didn't want stress it at all. I also had a need to explore and understand the scars, this method made it ok and even beneficial to do that.
So l just do what the video says.
It have to say that this forum has both educated and freaked me out. But the supplier of the DVD recommended against sticking needles in your penis, using mechanical devices and other things that make you wince. That line of thought made sense to me. Then I discovered this forum and read about some who have indeed been made worse by needles and devices and it made even more sense.
My condition appeared last Dec and proceeded quickly to a manageable bend (20) and ED problem. After starting supplements, stretching and magnetic pens it hasn't got worse. Maybe just a bit better.
Been a two months, bit early really but some improvement seems to be there. I'm combining it with Genesen Acutouch pens. I've used them to work on one scar which seems to be changing for the better so far but you know how difficult to measure these things are.
Can you explain your stretches in detail please? I'd like to possibly try them. Thanks
i,ve got peyronie,s for a few months . curving upward at the head. i don,t notice any pain.a few days ago i had duplex and the dr. prescribed pentox and vitamin e and a supplement and 'traction". i can,t see how i,m gonna be able to wear the traction 4 hours a day for many months .and from the way i read there,s a good chance i,m gonna damage my penis trying to install the dang thing. what,s the chance that the condition will not worsen? personally i can live with it the way it is. what,s the chance that just by taking the oral meds it will improve? fingers crossed.
I have no experience from using the traction but from what I've read, it's not ideal for curves right next to the glan. I think VED (penis pump, theres a sub-section expecially for VED) would be a better option for curves right next to the glan. Also I'd be careful with using alot of vit A, as this will lower vit D. I think vit D is alot more benefitial for Peyronies Disease then vit A. I wonder why he would prescribe vit A for Peyronies Disease?
James
Your doctor is way behind times. The FDA has taken the Fast Size Penile Traction Device off the market because it is not FDA approved.
IMHO go to the VED section that is a much better option and it only takes a few minutes a day.
Jackp
Jack, These doctors are recommending traction largely because Levine recommends it. I don't use either method myself, but for the life of me I can't see what advantage traction has over the VED. The VED has certainly been proven for ages around here and as far as I know it has no issues with the FDA and far less risk of serious damage from misuse/overuse. Everytime someone posts about what their general urologist, (half of them *claiming* to know all about Peyronie's), is telling them to do or not do, I brace myself for what I'm going to hear now. And occasionally, even the experts like Levine and traction, surprise me. Everything I've read suggests to me that the VED is the better approach of the two. - George
Hey,
Im a 22 year old male living in the uk! i have just plucked up the courage to visit my doctor, my concerns were that my penis bens upward about 30 degrees, and a little to the left. The doctor has reffered me to a urologist on the NHS (woop woop)
Id just like to know a few facts.. iv had a bent penis as long as my early teens, and have been sexual acctive since i was 13 and can remember no specific injury.. im sure over the last 9 years there has been no change in the bend, it hasnt worsened, therefore im sure its 'stabalaised'... i would just liek to know my options, iv heard horror stories of loosing inches after having surgery.. people saying about traction devices and ved's.. does any of it work?
Iv just came out a long term realtionship and am seeing a new girl, im a bit worried about having sex with her for the first time.. my previous girlfriend never commented on it.. and could pleasure her no ends! but its alwys in my mind..
if i was to have surgery how long would i have to wait for the op on the NHS? would you reccomend to go privately? as u can understand i just wanna get it sorted!
Any one can help me and ease my mind a bit i would be greatful, its on my mind a good 90% of my mind at the moment :(
Cheers
Nixxysarge,
All I can say is "if it isn't broke, don't fix it".
Seriously, if you are not having problems and it has been that way since you can remember, I would leave well enough alone. But, if you wanted to give a VED a try, it can't hurt anything as long as you don't over do it.
GS
For that much of a bend, which is still quite workable, you should try other options before you even consider suregery. Seriously - the surgery should only be a very last resort - an attempt to salvage something from an otherwise unworkable situation. Read my post in the Members Stories forum and you'll get an idea.
well i am new to the forum so here it goes...
i am 30 years old and have had peyronies since i was 14.I hurt my penis during masturbation and further injured it at the age of 22.My penis bends and twists to the right.I can't have sex as its to painful.I have seen multiple urologists with one recommending an implant at the age of 23, this was the head guy at the U of MN who knew nothing about alternate treatments.I have what is called a sub-clinical fracture with no noticeable plaques.I eventually went to the mayo clinic and was put on pentox.I took this for many years and it did help until I had issues with my stomach.I am trying to get back on it but seem to have side effects.This whole thing has taken quite a toll on me as I am depressed quite a bit and sometimes think of ending it all.Hopefully the physcologist I am seeing can help with this.This forum has definitely helped me deal with the issue.I am trying to buy a ved with 3 chambers but it seems to be a pain.I did however make a new appointment to see the urologist at the mayo as i haven't been there for 5 years.Hopefully God willing i can find a way to deal with it.
I replied to one of your posts elsewhere. However, I notice here that you're considering the VED. I would definitely advise you to do down that route, especially if you are having problems with oral treatments due to your stomach issues. It's certain an approach that might see you making improvements.
How's it going with the COQ10, hornman?
Things have been better the last couple of days. I,m taking 100mg ubiquinol 3x per day and I'm on day 14 of Pentox. The pain is less and my unit seems to hang with a little more fullness. It's really way too early to know if this will be a fix or not. I have always suffered pain flare ups which resolve only to flare up again. I am one of those whose glass is always half empty. :) If my 30 deg curve goes away and I regain some lost size I will then consider it some progress. Of course maybe the meds will prevent 30 degs becoming 90degs. One never knows with this sucky disease.
It will take some time before you get the full benefit from the Pentox and Ubiquinol. But things should continue to get better for a while and they should definitely NOT get worse. It just takes persaverence and determination and sticking with the stuff that is known to work, Pentox and Ubiquinol. - George
At least two supplements improving mitochondrial function potentially help Peyronies Disease: coenzyme Q10/ubiquinol and acetyl-L-carnitine. Pyrroloquinoline quinone (PQQ) is a substance that can give rise to new mitochondria in cells (ref (http://www.jbc.org/content/285/1/142.abstract)). Mice fed a diet deficient in PQQ have stunted growth and abnormal collagen formation. PQQ is also involved in lysine metabolism.
Natto contains a lot of it (it incidentally also contains vitamin K2-mk7).
Anyway, I thought I'd give it a shot and have some on order. LEF seems to be the only place pumping selling it (http://www.lef.org/Vitamins-Supplements/Item01500/PQQ-Caps-with-BioPQQ.html) as a separate product at the moment (link to LEF article (http://www.lef.org/magazine/mag2010/ss2010_Rejuvenate-Your-Cells-Growing-New-Mitochondria_01.htm)).
s&s
Just found the number on natto: 61.0 ng/g. That's more than double of most foods listed (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1136652/?page=2), but still a tiny amount. The LEF product contains 10mg. You'd have to eat 164 kg of natto ....
Quote from: slowandsteady on November 29, 2010, 05:35:38 PM
At least two supplements improving mitochondrial function potentially help Peyronies Disease: coenzyme Q10/ubiquinol and acetyl-L-carnitine.
So this is interesting. ALC rejuvenates mitochondria. I did not know that before. Hmmm ... Certainly interesting that TWO mitochondria related substances seem to be helpful with Peyronie's (confirmed at least to some degree by research). Great observation S&S.
Quote from: slowandsteady on November 29, 2010, 05:35:38 PM
Pyrroloquinoline quinone (PQQ) is a substance that can give rise to new mitochondria in cells (ref (http://www.jbc.org/content/285/1/142.abstract)). Mice fed a diet deficient in PQQ have stunted growth and abnormal collagen formation. PQQ is also involved in lysine metabolism.
AND, very interesting that you should come up with this one. I have had my eyes on PQQ for some little while now thinking the same line of thought. What if ...
Quote from: slowandsteady on November 29, 2010, 05:35:38 PM
Anyway, I thought I'd give it a shot and have some on order.
So you are taking a shot at this one already. PLEASE update us as you go along as to how this is working out. Right now I have been too occupied trying to find something to KO my hypertension to be able to spend much time on Peyronie's.
Another thought that has crossed my mind is attempting to supply ATP externally in addition to all/some of the above. There are a number of very interesting ATP formulas out there. Interesting possibilities now that we seem to be narrowing something down here.
- George
I have just experienced surprising and exciting results from Ubiquinol in combination with Pentoxifylline. I just ordered PQQ the other day and am looking forward to adding it to the mix. I think we are really (finally) on to a potential cure for this crap at this point and I can't see how PQQ would do anything but add to the obvious effectiveness of Ubiquinol/Pentox. - George
Looks like another angle of interest. I will keep a close eye on how this goes for you. It seems like we're at the forefront of trying out some of these supplements for peyronie's. By the way, do we know what the logic was for using COQ10 in the Iranian study? They must have anticipated the possibility of receiving positive results so I'm wondering what that thought was initially based on.
The Iranian investigators discussed their reasoning behind the use of CoQ10 in the introduction to their study:
Quote
Coenzyme Q10 (2,3-dimethoxy-5-methyl-6-deca-prenyl-1,4-benzoquinone, CoQ10) is a fat-soluble,vitamin-like quinone commonly known as ubiquinone or ubidecarenone. Ubiquinone is reduced to ubiquinole (CoQ10H2) via semiubiquinone radical (CoQ10H). The fully reduced form of CoQ10 (CoQ10H2) exerts strong effects against the oxidative damage of polyunsaturated fatty acids. It is to be noted that CoQ10 is known to be the only endogenously synthesized lipid-soluble antioxidant. Decreased CoQ10 levels in serum, as well as a decrease of the CoQ10H2/CoQ10 ratio, have been demonstrated in diseases associated with oxidative stress. Peyronies Disease is characterized by an initial inflammatory reaction (acute phase) followed by fibrous inelastic scar formation (chronic phase). Inflammation produces oxygen-free radicals and it could be speculated that as inflammation in an acute or early chronic phase persists, an inability to respond to this with antioxidants may result in disease progression. CoQ10 is one of the most potent antioxidants, which is used to regenerate other antioxidants (tocopheryl and ascorbate), and may serve important roles in protection against oxidative stress and free radical oxygen damage. TGF-b1 is a key fibrogenic mediator. It has been reported that solubilized CoQ10 suppresses the expression of TGF-b1 induced by dimethylnitrosamine in mouse liver and mouse embryonic fibroblast cells. In addition, CoQ activates NF-E2-related factor-2(Nrf2). Nrf2 overexpression itself reduces the basal expression of a-smooth muscle actin and TGF-b1. Therefore, CoQ10-induced Nrf2 activation may suppress TGF-b1 expression. This study is the first prospective, double-blind, placebo-controlled randomized study on the effects of CoQ10 supplementation in men with early chronic Peyronies Disease.
So, basically, they saw CoQ10 as a logical extension of Pentoxifylline in terms of TGF-beta1 suppression plus massive antioxidant activity. But Slow and Steady's insights here are, in my thinking, intriguing. For whatever reason, the Italian team saw benefit from ALC. And I can attest that I was getting results from ALC over a long period of time and I think others around here were seeing positive results from it as well. And, as S&S points out, ALC AND CoQ10 both have a mitochodrial connection. Now put that together with the LEF position that mitochodrial dysfunction is at the root of degenerative disease in general. Presto! Now perhaps we can posit that tissue exhibiting mitochondrial dysfunction, in this case the TA, is an accident waiting to happen. The healing process, in which TGF-beta1 is involved, is a matter of the body eliminating unhealthy tissue and stitching together the surrounding healthy tissue. But what if there is no healthy tissue to stitch together? It is like trying to sew up a hole in an old piece of cloth where the surrounding cloth falls apart when any stress is applied to it beyond that of its normal usage. Its fine until you try to draw it together, then it falls apart. This is what I see happening with the tissue in question. So why DOES Co10 suppress TGF-beta1? Perhaps because CoQ10, with its amazing antioxidant activity, is reinforcing surrounding tissue by strengthening cellular mitochondria, thus finally providing the healing process a starting point? In any case, I think the link to mitochondria is as important, if not more important, than the link to TGF-beta1 that has long steered Peyronie's research. Whether that is actually the case or not, of course, remains to be seen. But even if the link is ONLY to TGF-beta1, just finding another capable TGF-beta1 tool that actually seems to work synergistically with the existing tool is huge progress. Additionally, as I have noted before, the intro to the study literally DEFINES CoQ10 as UBIQUINONE, not as UBIQUINOL. The fact that we are able to use the newer UBIQUINOL product instead of the older UBIQUINONE is huge, since most of us are older and would have a difficult time converting all of that Ubiquinone in the first place (which in fact, might well explain WHY we even contracted this disease). I think we are indeed seeing a tipping point here where actual healing can take place, at least for some of us, as opposed to only being able to stop progression, which has been the most useful result of treatment so far. But IF the Mitochondrial connection actually has legs (think PQQ!), which I suspect it might, I think we are in for a great ride here in terms of defeating this terrible scourge, and perhaps many other even worse scourges as well. - George
I had a botched circumcision performed at the age of 12 years. Much bleeding with very tight erections as an adult, scarring on the skin, skin tags, skin bridges, shortened length. At 49, I'm in my 7th year of using t-tapes to perform "tugging" and have regained much of the shaft skin that was removed, with increased length. Very happy and fulfulling sex life with my wife.
Just as I am starting to see very positive results with my restoration regimen, I injured my penis, and now have been diagnosed with Peyronie's. I'm shorter, bent slightly, and have painful erections. I'm in the acute phase. So, I've put off my foreskin restoration, and now dealing with a much more concerning problem. I'm afraid to start back with tugging, worried it might hurt my chances of this Peyronies Disease resolving over time. Anyone else tugging with Peyronie's?
Thanks for your forum.
David
David, You are catching this early, that is the good part. You will find a LOT of help around here.
My advice would be to get yourself on Pentoxifylline, a prescription drug, as soon as possible. The trick is finding a doctor willing to prescribe it. For that it will help to know where you are located geographically. Pentoxifylline is very effective, especially in the acute phase, as it reduces the inflammation, which reduces scarring and virtually stops the progression of the disease. Many of the world's top Peyronie's specialists are using it. There is data in the resource section of this forum ( https://www.peyroniesforum.net/index.php/board,10.0.html (https://www.peyroniesforum.net/index.php/board,10.0.html) ), simply look for the stuff referring to Pentox and print it out. If your local urologist refuses to prescribe it for you, you will need to ask for a referral to a Peyronie's expert who will. Pentox is safe, inexpensive and effective. The sooner you get started with it, the better. The standard dosage for Peyronie's is 400mg 3X per day.
Second piece of advice is to get started on Ubiquinol 100mg 3X per day. Ubiquinol's less potent cousin, Ubiquinone, has been shown effective against Peyronie's by recent research. I and others around here are using the above dosage of Ubiquinol and finding it extremely effective. Ubiquinol is a Japanese drug marketed in the US as a supplement. It is somewhat expensive, but worth the cost. Other than that it is safe and effective. I would get started on it right away. The faster you pounce in this, the more likely it will be that you can stop it before it does serious damage. Most urologists do not fully comprehend Peyronie's and recommend waiting to see what happens and then when the inevitable happens, they tell you it is too late to do something about it and now you have to just live with it or have surgery. Don't wait for that to happen. Get started with effective treatments NOW. If you current doc won't help you with this, find one who will.
I wish you the best.
- George
Thank you! I am going to share this info with my Urologist. I'm fortunate, my current urologist had some ideas for me for treatment. The first urologist my family doctor sent me to said he believed I fractured my penis and to just abstain from sex for 3 weeks. I wasn't at ease with that diagnosis, and sought a second opinion. The urologist I'm seeing now said that I did not fracture my penis which he said is a medical emergency. He diagnosed me with Peyronie's. He said to take 1200 IUs of vitamin E each day and that Verapamil cream might be the next thing if needed. He was very optimistic that I would be one of the lucky where the disease resolves on its own. Not sure why he feels that way, since I read it's the minority that are so fortunate. I'm also taking Aceytl-L-Carnitine 1g a day which was not mentioned by either urologist, but have read it might help.
My biggest concern is how this is affecting my relationship with my wife, and my mood. I've struggled with depression in the past, and am hoping, and praying, this does not drag me back down into that hell.
I am so glad there is this forum, it helps a great deal to not feel alone in this battle to beat this thing.
thanks again George.
David
1) I have never heard of a verifiable case where Peyronie's has resolved on its own, but most urologists believe this to be true like a religion. Ask anyone else around here and you will get this same answer. Anyone!
2) Vitamin E and Verapamil cream are pretty much worthless long term. Many on this forum have used them without any significant benefit. Most urologists believe they are effective. Patients will tell you otherwise. I used Vitamin E for a long time with very little benefit. During the time I was using Vitamin E, the underlying disease was advancing aggressively while Vitamin E was basically masking some of the symptoms. Only when I finally saw a Peyronie's expert who put me on Pentoxifylline did I see real results. More importantly, there are NO scientific studies showing clear benefit from the use of Vitamin E OR Topical Verapamil.
3) ALC is much more potent and actually has therapeutic value. I used it for a while and experienced benefit. There is a study by an Italian team showing ALC to be beneficial in the treatment of Peyronie's. But 1g per day is useless. You would need at least 3g per day. And ALC's effectiveness is nowhere near that of Ubiquinol. No where near. ALC will not likely stop the long term progression of this disease.
My advice stands. Show your doc the studies demonstrating the effectiveness of Pentoxifylline and Ubiquinol and challenge him to produce similar independent studies showing Vitamin E and Verapamil effective. But whatever you do, don't waste your time. If you don't stop this disease now, even the best treatments later on won't be nearly as effective. You need to be using the right medications NOW and Vitamin E and Topical Verapamil are NOT the right medications for this disease. Vitamin E is the old standby that docs who are not up on latest treatments ALWAYS prescribe. Topical Verapamil is a newer treatment that is supported by one study and challenged by multiple other studies showning no benefit. But Topical Verapamil is being heavily marketed to urologists by its manufacturer. These are NOT the right treatment choices.
Here are the links to those studies:
Link to Pentoxifylline Study (https://www.peyroniesforum.net/index.php/topic,1004.msg23292.html#msg23292)
CoQ10 Study (http://www.nature.com/ijir/journal/v22/n5/full/ijir201020a.html)
Also this one in which Peyronie's expert Dr Lue outlines effectiveness of different Peyronie's treatments:
http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg# (http://knol.google.com/k/tom-lue/peyronies-disease-acquired-deformity-of/YjC9Puq6/B9bMvg#)
Here is some discussion on this site regarding Topical Verapamil. Read it:
https://www.peyroniesforum.net/index.php/topic,328.0.html (https://www.peyroniesforum.net/index.php/topic,328.0.html)
https://www.peyroniesforum.net/index.php/topic,1361.0.html (https://www.peyroniesforum.net/index.php/topic,1361.0.html)
If you need anymore help in getting copies of these, PM me. - George
Thank you thank you! I will be aggressive in getting more help with these other treatments.
What do you think of some of the other oral treatments listed on this site?:
urologycentersal.com/uca-urology-topicsPeyroniesDisease.php
I am in Alabama, and have sent that site a request for an appointment for a 3rd opinion.
David
1) Topical creams are a waste of time.
2) Pentoxifylline is the generic version of Trental. Potaba and Colchicine work, but are problematic in terms of side effects. The others are worthless.
3) Vacuum Erection Devices work very well and I recommend them, but not for guys with early stage Peyronie's. Unlike Pentoxifylline and Ubiquinol, they are only a treatment and don't have the potential to actually reverse Peyronie's.
4) All the rest are so fraught with potential side effects that they should be considered only after the above therapies have failed.
If you can convince them to dispense you Pentoxifylline (generic Trental), that is what will be the best solution for you. Combine that with over the counter Ubiquinol and you are on your way. They don't mention Ubiquinol because the study supporting the use of CoQ10 products was just released less than a year ago. And if that does not prove to be enough, you can always add Vacuum Erection Device therapy later.
- George
Relooking at my original subject title, a set back in my foreskin restoration regimen is now the least on my mind! It sucks that I had gained about an inch in erect length through my restoring efforts, and now with this Peyronie's, have lost that and maybe more.
Restore:
Did you get my private message to you dated Friday? If you did, give me one back with the information I asked you for, etc.
Old Man
Old Man, thank you for the feedback. I will be getting another opinion as I wrote in a few days from the Urologist Centers in Birmingham, will let you know what they say. Thanks everyone here for the great advice and this forum.
David
Restore, If you need to start VED therapy at any time, Old Man is the absolute expert around here and he will be able to help you with any issues you encounter. - George
Just had my appt with the Urologist Center in Birmingham, and am pleased to say the doctor put me om pentox right away as well as an oral steroid since he believes I'm early in the inflammation stage. I will continue with Ubiquinol and the ALC also. Maybe just my imagination but the lump in my shaft feels smaller and less firm. But I have noticed the pain has subsided somewhat in my early morning erections. The doctor encouraged me not to refrain from sex with my wife and just to be careful with certain positions, but do what we like. He also said to take solace in the fact that I am not alone and have a supportive wife. I really liked talking to him. He wants me back in six weeks for a followup.
Congratulations!!! Now finally you are on the right track with a physician who understands Peyronie's and how to treat it. I know you will be seeing impressive results soon. I'm so happy for you! - George
thanks to you George and Old Man, as well as others on the forum that got my attention! This place is a blessing.
I am in the early stages of Peyronie's Disease (2 1/2 months) and have spent most of my fee time doing as much research as possible for potential treatments. I was fortunate to find this site and am so very thankful for all the excellent advice and support I have been given by many of this site's members, thank you!!
In the last 2 1/2 months I have seen this disease move pretty rapidly; I noticed a thick bump 2 1/2 months ago, waited a month to see a doctor because of embarrassment (stupid me), I finally saw a doctor, he sent me to have an ultrasound immediately, I was given a referral to a Urologist, it took three weeks to get to see him, which ultimately was a big waste of time as he basically said, "You have Peyronie's Disease, check back with me in 6 months and we will see how it has progressed". And this was a doctor?? I was always taught that you should be proactive and catch any illness as early as possible, then start a treatment program immediately. So, that is what I have done...I got on the computer, did my research, found this site and immediately made an appointment with my primary care Physician to see if she would put me on Pentox right away as it was the most highly reccomended possible treatment I found thus far. I was very fortunate as my primary care Physician took a look at the "Iran Pentox Controlled Study" that a few of this site's members suggested I take with me to the appointment, she put me on the medication right away!! At the same time she put in a strongly written request to the medical board that I be allowed to see one of the Peyronie's Disease specialists that were listed on the site that was provided to me by this site's members as well, thanks again guys...:)
I am now waiting to hear back on the approval of the referral, but in the meantime here is my daily oral treatment plan;
Pentoxifylline - 400 mg. tablet (3) times a day (prescription drug)
L-Carnitine - 250 mg. capsule (1) time a day
L-Arginine - 500 mg. capsule (1) time a day
Vitamin E - 2 units d-alpha Tocopherol with Tocopherols & Tocotrieno capsule (4) each morning
Vitamin D3 - 2000 intl units tablet (1) time a day
Vitamin B12 - 2500 mcg sublingual tablet (1) time a day
Aloe Vera - capsule (1) time a day
I have been taking everything listed above for one week now.
I want to mention that I am already on two other prescribed drugs for many years of depression and anxiety just in case some of the readers are as well;
Clonazepam - 1 mg. oral tablet (3) times a day
Bupropion - 300 mg. oral table (1) time a day
I am hoping that all the years that I have had major anxiety and depression has not somehow manifested itself in me in the form of my Peyronie's Disease. This thought crosses my mind quite often as the human body is known to produce bad things within you when major stress occurs.
I will continue to give updates to my progress using the above treatment in hopes that it will benefit me and in turn benefit others. As soon as I am approved to see the Peyronie's Specialist I will give an update as well as to his thoughts and any new direction for me.
Thank you all again for all your guidance and support!!
Madigan,
Hang in there! Looks like you're taking most of the "forum-endorsed" oral treatments. You may be missing Ubiquinol and Viagra.
I gather from your earlier posts that you have a curve. If so, and even if not so, I strongly suggest that you obtain a medical-grade quality VED and use that to keep your tissue stretched out and maintain fresh blood flow.
Please see many of the VED posts, especially the ones by Old Man, Angus, Newguy, and Tim468.
CF
Hi CF,
Thank you for your input. I have been holding off starting the VED just until I can see the Peyronie's specialist as I have been told by some members of this site that since I am in the acute stage of the disease it may possibly cause more harm, in turn causing my body to produce more scar tissue / plaque to repair and damage from stretching. I am a little torn on this as I can see both sides of the recommendations. I did get all the information I need from OldMan to order the VED when I decide to start the treatment. Any further thoughts you have would be greatly appreciated.
My Best!!
If you get all of the burning inflammation resolved with Pentox and Ubiquinol, the VED may well be OK for you. But I would get the inflammation quelled first. - George
Madigan,
I don't know who might have told you to do nothing. I think the "experts" on this forum would tell you to aggessively treat your condition during the acute phase to KEEP THINGS FROM GETTING WORSE. All the advice is here on doctors/specialists, meds (Pentox, etc), traction, VED, etc.
Don't wait.
Madigan,
That's a good plan you have outlined. You might want to up some of the arginine and carnitine after seeing how you react in a few weeks (also, I think acetyl-l-carnitine is better...see here: http://juvenon.com/jhj/vol2no05.htm). I would also add ubiquinol 100 mg a day, increasing to 300 mg per day... based on a study on ubiquinone (the less active form of ubiquinol)
How long have you been on Clonazepam and what dose? Clonazepam (most likely, in long term use) interferes with GnRH production which decreases FSH and LH - ultimately decreasing testosterone. Do you have any symptoms of low testosterone (libido is low, low motivation, tired, low erection quality, lack of morning erections, etc...)? Can you get your Free T levels checked? Would your docotor do it? Dr. Abe Morgentaller (Beth Israel / Harvard) has published papers on the link between Free T and Peyronie's Disease which are pretty suggestive that Low T can be a cause (though aging is the third variable that is hard to rule out).
Hi Mike,
Thank you for reading my post and for your input.
I am strongly thinking about adding Ubiquinol to my oral treatment plan as you have suggested. Please see the update that I am going to post tonight as I will have been on Pentox now for two weeks.
To answer your question, I have been on a 1 mg. dose (3) times a day of Clonazepam to treat major anxiety for about 6 months now. Prior to that my doctors have had me on most every known anxiety drug with mixed results for many years now. Funny you should mention them all, but I do have a very low sex drive, low motivation, tired often, poor erection quality, etc. I think I will follow your advise to have my testosterone level checked, that makes perfect sense.
Much appreciated information....:)
Quote from: Madigan on January 11, 2011, 12:05:00 AM
Hi Mike,
Thank you for reading my post and for your input.
I am strongly thinking about adding Ubiquinol to my oral treatment plan as you have suggested. Please see the update that I am going to post tonight as I will have been on Pentox now for two weeks.
To answer your question, I have been on a 1 mg. dose (3) times a day of Clonazepam to treat major anxiety for about 6 months now. Prior to that my doctors have had me on most every known anxiety drug with mixed results for many years now. Funny you should mention them all, but I do have a very low sex drive, low motivation, tired often, poor erection quality, etc. I think I will follow your advise to have my testosterone level checked, that makes perfect sense.
Much appreciated information....:)
1mg of Clonazepam isn't a lot. It's unlikely to affect your T levels, but is
could do it via the GnRH route in higher amounts long term. However, that dose is low. Some epileptic patients can get up to 12 mg per day. I think klonopin alone can depress your sex drive and erectile capactiy without even affecting your testosterone if you are on it long term...however, I think the benefits of this drug might outweigh the risk if there are no alternatives & the anxiety is that bad. It's so effective for anxiety - and very rare that a drug works as well as this one happens to work. It's just too bad there are long term dependence and side effect issues... but SSRIs all have that too - klonopin just gets a worse reputation bc I think people on it for 10 years are really unhappy w/ what happens - memory loss, in particular - is worse than the sexual dysfunction...and it is very hard to get off. However 1 mg is not a lot at all to get that concerned. You may get tolerant as time goes on though...try to keep it close to 1 for as long as you can.
By the way, if you have anxiety issues - pentox can make them worse... usually not in the first 2 weeks but if you notice something by the 4th week, you're not imagining it. Many on here have reported sleep and anxiety issues on pentox, including me. I reduced my dose to 800 per day and it was a little better but still not free of some sleep issues (waking up a lot at night) and some weird dreams, with some transient daytime anxiety.
Mike, Really, really good post. I totally agree about Klonopin. Its absolutely the best drug out there for anxiety. And I also agree about the Pentox issue. Enough guys around here have reported anxiety with Pentox to confirm that it DOES cause anxiety issues for some. Personally, I have experience with both drugs. I was on Klonopin for nearly a year and it was like magic for anxiety. I had been on other anxiety drugs and NOTHING works like Klonopin. Now I am completely off Klonopin for a number of years and on Pentox and the anxiety (which I suffered from for years) has not come back even with Pentox. Dealing with a whole lot of issues like Vitamin D levels was helpful in getting rid of anxiety. Also, aloe vera gel fixed my heart palpitations which GREATLY relieved my anxiety. A lot of things can cause anxiety. Heart issues, acid reflux (possible Pentox connection?), and a host of other physical problems. You solve the physical issues and the anxiety vaporizes. - George
Quote from: George999 on January 11, 2011, 10:48:16 PM
Also, aloe vera gel fixed my heart palpitations which GREATLY relieved my anxiety.
I wonder sometimes if I have something wrong with my heart. Also, I've been having trouble with anxiety for the past year.
How can one get tested for heart palpitations? Does heart palpitations cause stinging sensation in the chest?
thanks George
Quote from: George999 on January 11, 2011, 10:48:16 PM
Mike, Really, really good post. I totally agree about Klonopin. Its absolutely the best drug out there for anxiety. And I also agree about the Pentox issue. Enough guys around here have reported anxiety with Pentox to confirm that it DOES cause anxiety issues for some. Personally, I have experience with both drugs. I was on Klonopin for nearly a year and it was like magic for anxiety. I had been on other anxiety drugs and NOTHING works like Klonopin. Now I am completely off Klonopin for a number of years and on Pentox and the anxiety (which I suffered from for years) has not come back even with Pentox. Dealing with a whole lot of issues like Vitamin D levels was helpful in getting rid of anxiety. Also, aloe vera gel fixed my heart palpitations which GREATLY relieved my anxiety. A lot of things can cause anxiety. Heart issues, acid reflux (possible Pentox connection?), and a host of other physical problems. You solve the physical issues and the anxiety vaporizes. - George
Thanks George. Out of curiosity, how did you get off klonopin? It's pretty hard after a year or two. How does the aloe vera gel work? Its absorbed systemically from rubbing it on? That's interesting. I have had PACs when I was much younger but they went away (nobody knew why I had them or why they are gone - maybe a virus was the thought). very uncomfortable. On rare occasions, I get one these days but not clinically significant (a 24 hr monitor wouldn't get it - would need a 2 week monitor). I took klonopin in many years ago... went off - but needed it on occasion... it's downfall is that it works too well, so it's really hard to stop. I don't know if I'll ever be 100% without it somewhere in my house.
What got me off Klonopin was that I didn't like paying the doctor to prescribe it, although it was working exceptionally well for me. My primary care physician refused to prescribe it for me. I think he felt it to be overly addictive. The doctor who did prescribe it worked mental health issues a lot. So I discovered Nature's Way Valerian Nightime. This isn't like any old Valerian product. It is actually made by a German pharmaceutical company. In Germany, Valerian is a prescription drug. So whatever the Germans do to make this stuff work works really well. It worked better for me on anxiety than the Xanax that my PCP was offering me, and with no side effects either. I don't use it anymore but I always keep it on hand for emergencies. The Aloe Vera Gel was oral. It stopped my palpitations right away after even Metoprolol failed to control them. Aloe Vera Gel is pretty useful for cardio vascular issues. It fixes angina, but the docs don't use it because its so cheap and not worth enough to run the necessary trails. - George
wow very helpful. i tried valerian ages ago but just felt tired... wasnt a german brand - probably gnc or something. interesting about aloe too - i had no idea. thanks (sorry to take your thread off topic madigan!)
Quote from: Madigan on January 04, 2011, 06:07:25 PM
I am in the early stages of Peyronie's Disease (2 1/2 months) and have spent most of my fee time doing as much research as possible for potential treatments. I was fortunate to find this site and am so very thankful for all the excellent advice and support I have been given by many of this site's members, thank you!!
In the last 2 1/2 months I have seen this disease move pretty rapidly; I noticed a thick bump 2 1/2 months ago, waited a month to see a doctor because of embarrassment (stupid me), I finally saw a doctor, he sent me to have an ultrasound immediately, I was given a referral to a Urologist, it took three weeks to get to see him, which ultimately was a big waste of time as he basically said, "You have Peyronie's Disease, check back with me in 6 months and we will see how it has progressed". And this was a doctor?? I was always taught that you should be proactive and catch any illness as early as possible, then start a treatment program immediately. So, that is what I have done...I got on the computer, did my research, found this site and immediately made an appointment with my primary care Physician to see if she would put me on Pentox right away as it was the most highly recommended possible treatment I found thus far. I was very fortunate as my primary care Physician took a look at the "Iran Pentox Controlled Study" that a few of this site's members suggested I take with me to the appointment, she put me on the medication right away!! At the same time she put in a strongly written request to the medical board that I be allowed to see one of the Peyronie's Disease specialists that were listed on the site that was provided to me by this site's members as well, thanks again guys...:)
I am now waiting to hear back on the approval of the referral, but in the meantime here is my daily oral treatment plan;
Pentoxifylline - 400 mg. tablet (3) times a day (prescription drug)
L-Carnitine - 250 mg. capsule (1) time a day
L-Arginine - 500 mg. capsule (1) time a day
Vitamin E - 2 units d-alpha Tocopherol with Tocopherols & Tocotrieno capsule (4) each morning
Vitamin D3 - 2000 intl units tablet (1) time a day
Vitamin B12 - 2500 mcg sublingual tablet (1) time a day
Aloe Vera - capsule (1) time a day
I have been taking everything listed above for one week now.
I want to mention that I am already on two other prescribed drugs for many years of depression and anxiety just in case some of the readers are as well;
Clonazepam - 1 mg. oral tablet (3) times a day
Bupropion - 300 mg. oral table (1) time a day
I am hoping that all the years that I have had major anxiety and depression has not somehow manifested itself in me in the form of my Peyronie's Disease. This thought crosses my mind quite often as the human body is known to produce bad things within you when major stress occurs.
I will continue to give updates to my progress using the above treatment in hopes that it will benefit me and in turn benefit others. As soon as I am approved to see the Peyronie's Specialist I will give an update as well as to his thoughts and any new direction for me.
Thank you all again for all your guidance and support!!
Here is my first update as to my progress taking the above medications for my Peyronie's;
I have been taking these medications for over two weeks now (18 days). There is not really that much to report as it is still early on in my treatment, but I thought that it would be good to post what I have noticed.
1. I have not felt any decrease in the plaque building up in my penis as of yet. If anything, there has been a small increase in plaque build up. The plaque seems to move around from the base of my penis to mid-point, not sure if others have this happen to them?
2. Yesterday, when I had my last erection, my penis did seem to look less bent. Though when I tried to straighten it with my hand it was less flexible than the week prior. I try to get an erection at least once a day, though when I do I become depressed seeing my bent penis. When erect, my penis is shorter than it was prior to the onset of Peyronie's. I was just over 7" erect, now I am about 6 1/2" erect or a little less.
3. When flaccid, my penis looks normal and straight, though it does seem a little shorter in this state too. You would not be able to tell that I have Peyronie's by seeing my penis in the flaccid state (using the word "penis" so much feels uncomfortable to me, but I will just need to get over that).
4. I have not had any pain associated with my Peyronie's since just prior to the start of taking my oral medications. When I noticed the first sign of Peyronie's (a medium size bump on the shaft of my penis) it was painful when I had an erection or sex. Anything rubbing up against the bump was very painful and uncomfortable. The pain went away about a month after the onset. I still do not have any pain associated with my penis when it is flaccid or erect now that I am on the medications.
5. My energy level does seem to have increased, as has my anxiety level. I can not be sure if my increased anxiety is due to the medications or if it is just due to me having this condition to contend with. Pentox has been said to possibly increase anxiety from what I have read, but I am not saying that it is the culprit for me.
6. My sleep pattern is still the same as prior to taking the medications. I sleep well through the night and wake up feeling rested.
7. I have noticed that when I urinate the stream is not that strong. This has been occurring since the onset of Peyronie's. Since taking the medications there has been no change.
8. My sex drive has definitely decreased since being diagnosed with Peyronie's, I am hoping that some of the supplements I am taking will boost my sex drive, I am being patient. Since I have started taking the medications, I have not noticed any increase in my sex drive. I need to also keep in perspective that now that I have a curved penis, I will most likely continue to feel uncomfortable having my partner see it. Thus, I am more distant.
I take my pills each day at the same time religiously. I am thinking of adding Ubiquinol to my medications starting tomorrow? I will start off with 100 mg. daily and increase to 300 mg. daily in about three weeks.
I was denied by my medical provider to see a Peyronie's specialist who is listed on The Association of Peyronie's Disease Advocates website. His name is Dr. Joel Gelman, and is located in Orange, California. Dr. Joel Gelman's office manager was kind enough to talk to me over the phone about my condition. She told me to visit his website which has a lot of information on his approach to the disease. www.centerforrecontructiveurology.org My medical provider has referred me to an in-plan urologist by the name of Dr. Feraidoun Khonsari MD. I called his office to see if he sees patients with Peyronie's Disease and his office manager said that he does. I will meet with him next Tuesday to see how good he is, then report back. He is located in Orange, California as well.
That is all for now, I will check back in with another update in about two weeks. I hope that some of the above information is helpful.
Thanks for the heads up Madigan. As you know I live in the SoCal region as well so I will be interested in your experience with your upcoming visit to the urologist. I have found that the amino acids tend to give me energy and depending on the brand, can make me anxious on some levels.
Speaking of amino acids, correct me if I'm wrong but I thought most of the advice on the forum pointed to taking the acetyl l form of carnitine rather than the l form of carnitine, as they are not exactly the same thing. Madigan, don't accept mine as the authoritative word on this, just wondering if others with more experience with these supplements and peyronies disease could clear this up. Good luck and look forward to hearing more on your next update.
I am a new member on this forum and joined it to find out more about peyronies. I have a small hard lump at the base of my penis on the top side. I went to my family Dr. and he told me most likely it was Peyronies Disease, he referred me to a urologist. The urologists told me that I had peyronis. He said not much can be done and that it could get better in time or it could get more painful. I don't have any curvature, it is just a little sore around the lump and you can feel some scare tissue going done the length of it (not all the way, just a short distance). When I get a erection it feels a little sore and in a little while the soreness is gone. My brother had Peyronies Disease and he told me that his got better over time and has no problem now. The only thing the urologists told me was take vitamin e 500mg. I don't like taking any medicine unless I have too, so I haven't started taking the vitamins yet.
I am searching for some answers on what to do, I have read several post on the forum. Any suggestions would be very appreciated.
Thanks
Phil
moses,
Most of the men on this forum are all about taking supplements, so if you don't even want to take Vitamin E, you are going to be in the minority here.
Probably using a VED or traction device would be the first and the most recommended thing you'll find here other than prescription drugs like pentox and a lot of nonprescription vitamins and supplements.
GS
Quote from: Madigan on January 15, 2011, 12:04:35 AM
Quote from: Madigan on January 04, 2011, 06:07:25 PM
I am in the early stages of Peyronie's Disease (2 1/2 months) and have spent most of my fee time doing as much research as possible for potential treatments. I was fortunate to find this site and am so very thankful for all the excellent advice and support I have been given by many of this site's members, thank you!!
In the last 2 1/2 months I have seen this disease move pretty rapidly; I noticed a thick bump 2 1/2 months ago, waited a month to see a doctor because of embarrassment (stupid me), I finally saw a doctor, he sent me to have an ultrasound immediately, I was given a referral to a Urologist, it took three weeks to get to see him, which ultimately was a big waste of time as he basically said, "You have Peyronie's Disease, check back with me in 6 months and we will see how it has progressed". And this was a doctor?? I was always taught that you should be proactive and catch any illness as early as possible, then start a treatment program immediately. So, that is what I have done...I got on the computer, did my research, found this site and immediately made an appointment with my primary care Physician to see if she would put me on Pentox right away as it was the most highly recommended possible treatment I found thus far. I was very fortunate as my primary care Physician took a look at the "Iran Pentox Controlled Study" that a few of this site's members suggested I take with me to the appointment, she put me on the medication right away!! At the same time she put in a strongly written request to the medical board that I be allowed to see one of the Peyronie's Disease specialists that were listed on the site that was provided to me by this site's members as well, thanks again guys...:)
I am now waiting to hear back on the approval of the referral, but in the meantime here is my daily oral treatment plan;
Pentoxifylline - 400 mg. tablet (3) times a day (prescription drug)
L-Carnitine - 250 mg. capsule (1) time a day
L-Arginine - 500 mg. capsule (1) time a day
Vitamin E - 2 units d-alpha Tocopherol with Tocopherols & Tocotrieno capsule (4) each morning
Vitamin D3 - 2000 intl units tablet (1) time a day
Vitamin B12 - 2500 mcg sublingual tablet (1) time a day
Aloe Vera - capsule (1) time a day
I have been taking everything listed above for one week now.
I want to mention that I am already on two other prescribed drugs for many years of depression and anxiety just in case some of the readers are as well;
Clonazepam - 1 mg. oral tablet (3) times a day
Bupropion - 300 mg. oral table (1) time a day
I am hoping that all the years that I have had major anxiety and depression has not somehow manifested itself in me in the form of my Peyronie's Disease. This thought crosses my mind quite often as the human body is known to produce bad things within you when major stress occurs.
I will continue to give updates to my progress using the above treatment in hopes that it will benefit me and in turn benefit others. As soon as I am approved to see the Peyronie's Specialist I will give an update as well as to his thoughts and any new direction for me.
Thank you all again for all your guidance and support!!
Here is my first update as to my progress taking the above medications for my Peyronie's;
I have been taking these medications for over two weeks now (18 days). There is not really that much to report as it is still early on in my treatment, but I thought that it would be good to post what I have noticed.
1. I have not felt any decrease in the plaque building up in my penis as of yet. If anything, there has been a small increase in plaque build up. The plaque seems to move around from the base of my penis to mid-point, not sure if others have this happen to them?
2. Yesterday, when I had my last erection, my penis did seem to look less bent. Though when I tried to straighten it with my hand it was less flexible than the week prior. I try to get an erection at least once a day, though when I do I become depressed seeing my bent penis. When erect, my penis is shorter than it was prior to the onset of Peyronie's. I was just over 7" erect, now I am about 6 1/2" erect or a little less.
3. When flaccid, my penis looks normal and straight, though it does seem a little shorter in this state too. You would not be able to tell that I have Peyronie's by seeing my penis in the flaccid state (using the word "penis" so much feels uncomfortable to me, but I will just need to get over that).
4. I have not had any pain associated with my Peyronie's since just prior to the start of taking my oral medications. When I noticed the first sign of Peyronie's (a medium size bump on the shaft of my penis) it was painful when I had an erection or sex. Anything rubbing up against the bump was very painful and uncomfortable. The pain went away about a month after the onset. I still do not have any pain associated with my penis when it is flaccid or erect now that I am on the medications.
5. My energy level does seem to have increased, as has my anxiety level. I can not be sure if my increased anxiety is due to the medications or if it is just due to me having this condition to contend with. Pentox has been said to possibly increase anxiety from what I have read, but I am not saying that it is the culprit for me.
6. My sleep pattern is still the same as prior to taking the medications. I sleep well through the night and wake up feeling rested.
7. I have noticed that when I urinate the stream is not that strong. This has been occurring since the onset of Peyronie's. Since taking the medications there has been no change.
8. My sex drive has definitely decreased since being diagnosed with Peyronie's, I am hoping that some of the supplements I am taking will boost my sex drive, I am being patient. Since I have started taking the medications, I have not noticed any increase in my sex drive. I need to also keep in perspective that now that I have a curved penis, I will most likely continue to feel uncomfortable having my partner see it. Thus, I am more distant.
I take my pills each day at the same time religiously. I am thinking of adding Ubiquinol to my medications starting tomorrow? I will start off with 100 mg. daily and increase to 300 mg. daily in about three weeks.
I was denied by my medical provider to see a Peyronie's specialist who is listed on The Association of Peyronie's Disease Advocates website. His name is Dr. Joel Gelman, and is located in Orange, California. Dr. Joel Gelman's office manager was kind enough to talk to me over the phone about my condition. She told me to visit his website which has a lot of information on his approach to the disease. www.centerforrecontructiveurology.org My medical provider has referred me to an in-plan urologist by the name of Dr. Feraidoun Khonsari MD. I called his office to see if he sees patients with Peyronie's Disease and his office manager said that he does. I will meet with him next Tuesday to see how good he is, then report back. He is located in Orange, California as well.
That is all for now, I will check back in with another update in about two weeks. I hope that some of the above information is helpful.
I am a little late in giving everyone an update as to my progress in my battle against Peyronie's Disease. I posted my first update 28 days ago, please see above.
First, let me let everyone know that since my last report, I have added Ubiquinol to my treatment plan; I take (1) 100 mg. oral gel capsule each day. I started taking Ubiquinol on January 16, 2011.
I have great news to report!!
The plaque that was building up inside my penis has greatly decreased in size!! When I touch the area on my penis where the plaque had originally felt dense and kept increasing in size, I now feel a much a smaller and softer mass. What is left of the plaque has not only softened, but has decreased in width and thickness. These results have me very optimistic about beating this thing!!
Now, when I get an erection, my penis has become even more straight. The curve is half of what it was in the beginning. I do have some tenderness and a little pain once again in the region of the remaining plaque when having sex. I am not sure if this is temporary due to the change in the plaque size and density. Hopefully as the plaque continues to become smaller the tenderness and slight pain will decrease as well. Getting an erection is easier now for me as well, I am more easily arroused, which is a major plus.
My energy level is still increased as mentioned in my last report, and the additional anxiety I was having has subsided back to my usual level.
When I urinate, I have noticed a slight increase in the flow of my urine from my last report.
I did meet with the second Urologist that my medical provider approved me to see. As I mentioned in my last report, he is not a Peyronie's disease specialist. This doctor was more knowledgeable about the disease than the first Urologist I met with, who gave me 5 minutes. He did not tell me anything that I had not already learned about the disease myself, but he did share what he knew and told me about the many surgeries he had performed on severe cases of the disease. He said that the men that he did perform surgery on had very mixed results. In my opinion, anyone that decides to have surgery needs to have it done by on of the Peyronie's Disease specialists, as these surgeries are routine for them and from what I have read, much more successful.
That's it for now....I am just so very happy to be able to report good new to everyone. Again, I am so thankful to the men on this site that have given me such great advise and direction!!
Quote from: Madigan on February 12, 2011, 08:09:27 PM
I am a little late in giving everyone an update as to my progress in my battle against Peyronie's Disease. I posted my first update 28 days ago, please see above.
First, let me let everyone know that since my last report, I have added Ubiquinol to my treatment plan; I take (1) 100 mg. oral gel capsule each day. I started taking Ubiquinol on January 16, 2011.
I have great news to report!!
This is great news and put a smile on my face. I'm not one to attribute improvements to speciic treatments, after all it could be that your condition would've improved somewhat anyway, or it could be a combination of the treatments helping and the fact that you got on top of this early. However, it is worth member mentally logging the fact that you added Ubiquinol into your regimen. A handful of positive reports have emerged of late from members, and I think we should aim to see it that develops into a trend over time. It's definitely something that people should add to their regimen in my opinion. If it turns out that it isn't as effective as we hope, then nothing is lost, if it is though, there is much to be gained.
More broadly, your regimen as a whole is pretty comprehensive, and includes pentox which realistically urologists should be clambering to give to those newly diagnosed. It's of note that you haven't even started on any mechanical treatments (ved, traction) and these improvements came about none the less. It makes me think that even without these treatments, you might come out of this relatively unscathed. If you reach a point where improvement stop, at least these are more options to tackle the problem. You're a great example of someone who found the forum early, took on board all of the mainstay treatments, and new editions (coq10 - as a result of the recent positive study) and appears to be in good shape as a result!!
I am one of the minority who doesn't take supplements, although I DID take Vitamin E at the onset of the symptoms. None of the doctors I consulted suggested supplements, so I had no idea they were being used until I found this site - and by the time I found this site my condition was too extreme for anything but surgery.
Although my surgery was successful (which does NOT mean I was fully restored to where I was before Peyronnie's -- it only means I can function), I strongly recommend you try the therapies others have found to be useful.
The person who started the thread does not want to use medication or supplements. That basically leaves the VED and Traction as the only remaining alternatives. Medication and supplements shown to be effective are Pentoxifylline and Potaba, both prescription meds, CoQ10/Ubiquinol, a prescription med in Japan, supplement in US, and Acetyl L Carnitine, supplement. All these have some research data showing them to be effective for Peyronie's. But Moses is looking for other alternatives at this point. - George
I am new to this board and new to Peyronies Disease. Short story: I first felt a bump on the shaft of my penis in October 2010. My doctor told me to lay off sex and see what happened. It did not get better. Saw a urologist for all of 7 minutes in late december. He told me I had Peyronies Disease, gave me a Viagra sample, told me to take Vitamin E, and see him in 4 months. Not satisfied with that wait-and-see approach, I became a voracious consumer of information, and found this terrific site. My GP has been great working with me on this.
I am now 4 months in to my discovery of my first bump, and while that one seems to have receded, I have a larger plaque on the side of my penis near the top. I still function fine (but not as well as before), can easily get an erection but have a harder time keeping it firm and erect for long, and have only a slight bend at the tip. My goal is to stop the progression of the disease in its tracks now, using whatever methods I can, and reverse the still-small damage that has occurred.
Would love feedback from the forum members here on my current treatment plan which is:
Vitamin E 400 IU
Vitamin D 1000 IU
Daily Cialis 2.5mg
L-Arginine 1000mg X 2
Acetyle-L-Carnitine 500mg X 2
CoQ10 300mg (just ordered Ubiquinol)
Pycnogenol 1X
Pentox 400mg X3
Anything else I should add?
What are your thoughts on Verapamil injections (seems to be quite the debate here)
Also penile extenders - and if so where do you get them now that the FDA has cracked down on them?
I am off to see another urologist next week, but, am guessing I have already learned more than he will know.
Thanks in advance for you help, thoughts, advice and support.
Blackseal:
Your oral treatment plan looks fantastic. Be careful with using alc, ubiquinol, and pentox together. Taking all 3 at once can do a number on your digestive system like they did mine, so I cut out the ALC. It's different for everyone, but if you start noticing stomach aches, diarhea, or bad gas, it's from that combination.
I'd stay away from VI's. They have a pretty bad reputation on this site, and given your minimal amount of plaque, most uro's probably won't even give them to you.
There are a lot of extenders still on the market. I believe it was just the fastsize devices that were targeted by the FDA for making medical claims. X4labs, andropenis, sizegenetics, jesextender and others are still around and are basically the same devices as fastsize, with the same amount of tension.
You oral regimen looks very comprehensive indeed. It's very close to my own (though I don't take vitamin E). I definitely think you're on the right track with that and have taken onboard what has worked for others here. That's great!
I agree with chefcasey's words about Verapamil injections. It may well be piushed by urologists, but for me personally, I don't see injections as a first line of treatment. Maybe Xiaflex will prove to be an exception to that, but with VI the results seem to be too mixed to recommend it where only minimal plaque is present.
There are similiar devices to fastsize (andropenis etc), so the issues with fastsize aren't the end of the world.
Blackseal,
Your story sounds similar to mine. I noticed a lump about 3 months a go now. My supplements regime sounds very similar to yours and I hope to add Pentox very soon and VED once I've decided to make the purchase. I hope to go on holiday for 2 weeks in March and don't fancy taking it on the plane and getting pulled to one side for an embarrassing conversation. I have a 1 cm lump close to the head and slight hardening on the otherside. I have a 10 degree curvature of the head and a slight hourglass shape. I believe my erections are not as strong, but I'm guessing this could just be because my mind is messed up, as there is no reason why a lump at the end would effect the rest of the penis surly? I'm glad your GP has been helpful. Mine said I could leave it or see a urologist. I really like my GP and I don't really blame him. You can't expect a GP to be an expert in everything. My first Uro told me to take Vit E until the pain had gone and just to come back if sex was impossible.
Currently taking
Vit E 600iu
L-Arginine 2000mg
CoQ10 200mg (will up this I think)
Acetyl L-Carnitine 2000mg
Pentox (soon)
VED (soon)
Good luck
blackseal,
you should consider adding Viagra or Cialis to your oral treatment - search the forum for a ton of information on the PAV cocktail - (Pentox, l-Arginine, Viagra).
Definitely get started with the VED, and I wouldn't give a d*&# what airport inspectors thought.
CF
Greetings all, and apologies in advance if this is on the wrong thread...
Thanks much for having this forum and for being willing and able and available to discuss Peyronie's. There is a ton of great information here......almost too much for a newbie. My short question is:
If I've had mild-to-moderate Peyronie's for approx 6 months, what are the top 3-5 things I need to do right away?
So far "see a urologist" and "start taking CoQ10" seem on the list.
Longer story: I'm a 34 year old gay man with a partner, but we don't have sex very often at all (THAT's a whole different topic, grr, lol) so I end up masturbating a lot. This summer one time when I was masturbating I noticed my penis was a little bit different and thought huh, that's weird. Then the next time it was different again and I thought, this is starting to freak me out. Then I had sex with my partner and he was like, what's up with the penis? and I said, good question! By "different" I mean:
Before my erection was
8" length, never measured thickness/girth but was uniform from base to tip, and straight with just the slightest, gradual, even curve to the left.
Now erect I am
a bit over 7", thinner at the base than before, thicker at the glans end than before, with a noticeable, sudden, 10-20 degree bend to the left that starts in the middle of my penis. (I'm guessing at the number of degrees...I don't own a protractor but maybe I should buy one, haha.)
My flaccid penis looks and feels *exactly* the same.
I did some looking around on-line and decided I probably had Peyronie's. I discussed at a previously-schedule appointment with my doctor in October; he said it sure sounded like Peyronie's (but he didn't see my erection and I didn't bring pictures, which was probably kinda dumb of me), that it was nothing to worry about, quite common, and there was really no need for treatment since I am functional sexually. This last statement is true, sort of...my erections are not as stiff as before which makes me annoyed, and I am having a lot of psychological issues around the change from what (in my humble opinion if I do say so myself) was a very nice erection to what is now, in my opinion, rather ugly. The psychological issues probably aren't helping erection stiffness, of course.
As far as I can tell, the shape of my erection has not gotten more or less bent since the first day it suddenly changed. And, I'm sorry but I have a really hard time buying the notion that this Peyronie's is due to a penile injury. I think I'd know if I had suffered a penile injury! And I have not in any way that I am aware of suffered a penile injury.
So now I am reading on here that this may in fact get worse, but that there are things I can do to help make it better. I was thinking my case was sort of severe but now I'm thinking it's not. I am reading that I should have lots of sex, and also that I should not have very much sex or it will get worse. I'm reading that I should pump, but only with certain pumps, and not too much because pumping could make it worse, and that injections help, or not, and that they can make it worse. I shudder to think how expensive this all is as well since I'm guessing medical insurance won't cover things like this.
Guys...I'm a little lost :-[ That's why I'm looking for the top 3-5 things you would suggest for right now.
Also, I feel weird asking this but, is there someplace that has a repository of Peyronie's images, so that I can see how mine compares to other cases in severity?
Thanks in advance for your help and support
Hey CF,
I mean how often would I have to take Viagra? It's not like I can't get an erection and have good ones during the night. I struggled a little at the start when I was first diagnosed but this was in my head. I know there could be some medical benefit when it is combined with Pentox. I really don't think a Uro in the UK is going to give me it on the NHS. How much does it cost on the net?
Cheers Ed
CF, I am indeed taking Cialis daily, about 2.5mg - 3mg. WG, I bought mine on the net for about $1.50 per 20mg tablet, which I cut up for the 2.5mg - 3mg daily dose. So it only costs $.20 or so a day. Definitely keeps things perky down there too!
You've asked lots of good questions. My first thoughts for your top priorities would be:
1) See a urologist (take evidence for pentox effectiveness from the resource library (https://www.peyroniesforum.net/index.php/board,10.0.html))
2) Order COQ10 (I take this one: http://www.iherb.com/Healthy-Origins-CoQ10-Gels-Kaneka-Q10-300-mg-150-Softgels/12355?at=0) . You could take a more comprehensive approach (example (https://www.peyroniesforum.net/index.php/topic,1581.msg29530.html#msg29530)) but that's up to you.
3) Undertake a physical treatment program too (VED etc)
4) Be patient and use this community for support if you need it.
I see what you mean about advice on the forum sometimes being difficult to follow. Those with peyronie's might be more suseptable to injury, so it's important to take a steady approach. That way you're maximising your chance of improvement.
There are certainly costs involved in treatment, but it is managable, and well worth it should you stop your condition worsening, or improve it. It's quite positive that your condition has not worsenned since the initial change.
bent_2011,
Yes agreed the information here can be a bit overwhelming. But I think if you read it carefully it is not contradictory. And basically there is no magic formula. What works for some doesn't work for others. The top 3-5 things to do in my opinion.....
1. Pentox I believe is the drug of choice. Some take it to relieve pain associated with Peyronies. But it is also known for increasing blood flow and used as a combination therapy to decrease your curvature. (Coq10 is gaining some momentum here recently, but prior to this Pentox was the recommended drug).
2. Use either a traction device or VED. But either have to be used carefully. Many tend to want to overpump with a VED and yes this can cause more problems. So use one or the other but pay heed to the precautions here.
3. Injections..... mixed reactions. Until recently the injections referred to a drug called Verapamil. At least one of the top Peyronies doctors recommends Verapamil Injections (VI). There are few if any accounts of anyone having improvement from these, although there are a couple of published studies on this. Several here have actually gotten worse from the injections. Now enter a new drug.... Xiaflex. This is in clinical trials now and seems to have some promise of improvement. It is not FDA approved yet and many here are anxiously waiting the results. The delivery method of injecting Xiaflex seems to be very similar to that of Verapamil. So I don't know if the "No needles in my penis" contingent feel any different regarding the Xiaflex results.
4. Don't change your sex habits. Some of what you have seen is that some doctors say take it easy, no sex, etc. These seem to be the same doctors who say "wait and see" or "there is nothing you can do". Well the advice of this forum is that there are therapies you can do, so don't take a wait and see approach. Be proactive with your therapy, and stay sexually active.
5. Positive mental attitude. You may come to find that your mental attitude has much more to do with your weakening erections more that you know. This was the case with me. Stay positive and don't let this wear you down mentally. Your 10-20 degrees is very slight compared to others here. But be positive and proactive s it doesn't get any worse. You can conquer this.
Les
Quote from: blackseal on February 16, 2011, 10:05:41 PM
CF, I am indeed taking Cialis daily, about 2.5mg - 3mg. WG, I bought mine on the net for about $1.50 per 20mg tablet, which I cut up for the 2.5mg - 3mg daily dose. So it only costs $.20 or so a day. Definitely keeps things perky down there too!
Would you mind sharing where you get your Cialis from. I'm looking for a good source.
WG,
per Viagra/Cilalis, most people take it before they go to bed and the intended benefit has to do with blood flow and preventing scar progression. Producing an instant erection is not the purpose. I used 25 mg of Viagra, nightly right before I went to sleep, for many months after I was first diagnosed.
I don't want to explain the theory of how it halts progression of Peyronies Disease, because I won't do the real explanation of the theory any justice.
But, fortunately for us, several members including Tim468 and George999 have offered their explanations in great detail over many posts....so, search the keyword viagra using their member name with the advanced search function on the forum.
Regardless of whether you can get great erections naturally, the properties of Viagra can help stop the progression of Peyronies Disease, according to research.
CF
@lwillisjr: I bought mine from tabsmarket.com I checked out the factory that made them (after they arrived) and it is a legitimate company. And the pills certainly do their job. For the daily dose, you don't want to take the 20mg. The pills are a teardrop shape so a real pain to cut in the pill cutter. I usually get 6-7 mini-pills when I cut one up so my daily dose is 3mg +/-. The 20mg pills are under $2.00 each depending on how many you buy, so the daily dose is pretty cheap......I would use them again. Good luck.
This might be a separate thread but I'm curious about the reasons for taking Cialis daily instead of every other night? My understanding is that Cialis works for a period of 48 hours (this might be only for producing erections though, not for the purposes we here are taking it for). I could understand daily Viagra but Cialis is different no? Mostly concerned with the cost and also potential long-term health issues associated with taking too much Cialis/Viagra (or taking it too often).
@dannyocean: I don't know why every day with cialis but this study seems to back it up: http://www.ncbi.nlm.nih.gov/pubmed/21324095
Thanks blackseal. I guess what I'm wondering is whether whatever property of Cialis that makes it something that lasts for 48 hours is the same thing that would mean you would only need to take it every other day to help with Peyronies Disease. I suppose to be on the safe side maybe taking daily is indeed better (especially if a low dosage).
As to the tabsmarket site you reference, how did you check out the factory? They are a lot cheaper there ($1-2/tab vs. $20/tab elsewhere). When I see stuff that is that far off in price my Spidey-sense starts tingling. :)
@dannyocean: What most people don't realize is that in the USA we spend almost $400B a year on Rx drugs. $50B of that is on generics. but generics account for 70% of all prescriptions written. generic drugs are cheap. Branded drugs (under patent protection) are not. Most generics sold in the USA are made in Israel (by Teva) and in India (by a bunch of companies.) All of these companies which sell generic drugs in the USA have their plants physically inspected by the FDA and have their generic formularies approved. As to Cialis, it is still under patent protection in the USA. So the pills made by Eli Lilly run $20 each. Some countries (like India) don't honor the same patent protections. So in this case you can have an FDA certified factory making generic Cialis (Tadalafil) which they can make and sell legally in some countries - but not in the USA.
Viagra for example comes off patent in the USA next year and generic versions will be available overnight at a fraction of the cost. Cialis is still years away from going generic in the USA. Hope this helps.
Thanks blackseal. I actually hadn't realized that there was a generic version of Cialis available outside the U.S. The website initially scared me away because it looked a bit shady (didn't ask for a prescription or anything). But maybe you don't need a prescription to buy ED drugs in the UK? Anyway, will investigate this further as it would trim my PDE5-inhibitor tab by 80-90%.
I have peyronies.... Lump appeared about four months ago slowly getting bigger and penis bending towards stomach presently 15 - 20 degrees. Its changed twice since onset of lump....
Its quite interesting to me a number of posts saying "I think I might have the condition, please help" I find that interesting because I have absolutely no doubt....... the symptoms are clear, classic peyronies and I know I have it. I wish I was doubtful ! That way the symptoms perhaps wouldnt be so clear !!
Anyway the pain in my erections seems to have eased in last six weeks or so, although the last change in bend was just two weeks ago.
Yes I'm worried but feel if the bend gets bad enough I can have a nesbits and off I go again ! (Life must go on).....
Wife is very understanding and supportive. I'm 47. Fit as a butchers dog. Have years of active sex ahead of me and I want to enjoy it.
Any support or advice you can offer would be most welcomed....
I'm seeing a specialist just next week....having been to a walk in clinic some 8 weeks ago.
I am in the U.K.
Hey Tod,
I'm from the UK and am currently trying Pentox and am about to start VED. Be warned that most Uro's will tell you to go home and wait 6 months to see what happens. My first uro did this and it put me into a state of depression. Peyronies sufferers need to feel like they are being active even if what they are doing has tiny positive effects. Something is better than nothing and we should be trying to stop it getting worse. I'm 28 and need my penis to last at least another 40-50 years. I can't tell you if pentox works as i've not been on it long and you may find it hard to get pentox in the UK also.
Tod,
Just my opinion, but leave surgery as the last option after you're out of the acute phase, and then only if intercourse is not possible. Personally, since after a botched circumcision I vowed never to have my penis cut on again, surgery is not an option for me.
Thanks Guys,
And good luck to everyone.... I'm not actually that depressed... perhaps its because my penis is still working (although a bit bent) and I'm expecting to be told to go home on Thursday and wait.... I have some vit. e tablets which I'm taking... I always take a multi vit in the morning anyway for general health and "lets get down to the gym and have a blast" reason.....
I realise surgery is a "last resort" but as a last resort at least there is something !
Anyway thanks again... I'll let you know how I get on on Thursday at the dick doctor !
I'd ditch the Vitamin E. There are positive studies in relation to peyronies for:
Pentoxifylline, COQ10, Acetyl-L-Carnitine, Cialis.
Of those I would describe pentox as essential.
Well it's been a couple months since I've posted on my progression, and I didn't want to jump the gun to make sure, but it's been about a month of consistency and I can finally state with confidence that I've stabilized.
For months I had been fiddling around with traction and ved, trying to get as many erections as possible to counteract shrinkage, and masturbation about 4 times a week. After about 6 months of all the pills and regiments and what not, and still being in pain, and still progressing, I sort of threw in the towel. I stopped all mechanical treatments, and cut down to masturbation only once a week.
I did however stick religiously to pentox, coq10, L-arginine, fish oil, vit d3, and a went through 2 bottles of ibuprofen to try to finally quell this inflammation. I also consumed a ton of antioxidants in the form of blueberries, raspberries, and pomegranite juice, and relying SOLEY on nocturnal erections for stretching. After a full month of this, I can safetly say that pain is gone. Also, I had been having uti/prostatitis like symptoms while urinating and afterwards, that is also gone.
I just took all of my erect measurements and I am happy to say that I still have not lost any length. Girth loss is no longer progressing and I measured curvature with a protractor, also no more progression.
I firmly believe that this disease is at it's root, an inflammatory spiral, and one cannot break the progression until it is stopped. It's taken 3 months of pentox, and 5 months of coq10, but it has finally started to work. If you've read my prior posts, you know how I had freaked out at times and almost lost it. I just want to thank each and every one of you that has given me advice, and strength. Hang in there guys, there is light at the end of the tunnel. God bless all of you.
-chefcasey
That's great news. Be sure to stay on the treatments. If progression has stopped, maybe there is room for improvement now.
Casey is a great example of how just doing a lot of "right" things and persevering at it can stop this stuff in its tracks. It takes treatments that are known to work such as Pentox and/or VED PLUS (http://plus) general health and lifestyle changes that reign in systemic inflammation which in turn create an environment in which the Peyronie's treatments can succeed. - George
I was under the impression for a long time that the only way to stop things from getting worse, was to do everything physically possible as far as stretching the scar tissue to see improvement. All in all, I think that stretching too much whether it's traction, ved, or sexual activity, while still being inflamed kept it in a state of constant inflammation. I think a lot of new guys get so scared that once they see some shrinkage, they immediately think "I've got to do something about this right now", myself being included. The logical reaction is to try and stretch things back to normal any way you can. What I failed to realize is that your own body will counteract shrinkage in the safest way possible while at the same time trying to heal via nocturnal erections. Don't get me wrong, I think that mechanical therapies have their place in fighting Peyronies Disease, but at least in my case, it definitely wasn't the right thing to do in the initial inflammatory stage.
I was thinking about eventually returning to some sort of mechanical therapy, but I'm perfectly satisfied with the path that good lifestyle and oral treatments have given me. If I can give any new guys advice, take it easy on your penis. Make getting rid of inflammation your PRIMARY goal. Use all of the proven supplements on the board, and if need be, take some nsaid's or celebrex along with it for a short while, just to nip it in the bud right away. Also, don't underestimate the effect exercise has on your body. Exercise is a great way to kick start your bodys own healing process, as well as producing pain fighting endorphines, and not to mention it's just good for overall health. And last but not least, maintain a good diet. What is the use of taking all of these supplements for Peyronies Disease, if all the food you ingest is terrible for you? Even if it isn't perfect, I think just elimnating a lot of refined sugars and processed foods is a huge step forward.
Well I am new here, (having Peyronies Disease for nearly 3 years now).
I read a study about cialis: they are saying the ideal dose is 5mg per day.
Actually the "real" cialis comes in so called monthly supplies 30 pills at 5mg each.
They are made for such purpose. I wonder if some of the "parallel suppliers" have also such pills..
@blackseal
i would add an enzyme cocktail like neprinol (they say they have good results with Peyronies Disease)
Luc
Good for you chef, that's great. I hope it stays stabalized and does not return. If it is working for you, keep doing it and then when your ready and comfortable to add more stimulae. Do so at a slow introduction and you will know the signs when to back off. Hopefully it just keeps getting better for ya.
I seem to be stuck in this inflammation state right now. No erect curve from it yet! But this pain is a really bummer, there's just no rhyme or rhythm to the pain. May I ask you chef if your pain moves around? The only consistant thing with my pain is that it remains on the left side of my penis. But the pain moves all over the place on the left side. Sometimes near the head or half way down the shaft or more underneath or up on top. Somedays the pain is more or less, whether I have none or more sex, no difference.
I hope your pain dosen't come back like it did for me. Because I did manage to get rid of my pain for a couple months, then alittle bit of rough sex seemed to spark it again.
I hope I can find stabalization one day with my pain without the added curve of course.
Okay so I have been to the Doc... and as I thought he said go home and wait.
He was actually quite knowledgable about the decease and a really nice bloke. I showed him a picture of my curve and he examined my lump and he confirmed I had peyronies.... One interesting factor was the fact he said he saw loads of examples of the decease each week going to the clinic and it was more common than most people think.....
As my curve is straight up and about 20 degrees and causing no issue with penetration and the pain is easing he tried to put my mind at rest saying basically best leave alone until it does cause real problems... the knife is deffo something best avoided and only used as a last resort.....
On the topic of oral medication..... All unproven in clinical trials so therefore nothing he can offer really. Vit E at best helps with pain and nothing else.... certainly not the onset of the decease.... He said as my pain has subsided in recent weeks thats a good sign and hopefully the condition will improve.
Whilst he said do nowt, I felt I was listened to, he explained everything I wanted to know and although he has discharged me back to my GP at this point...... (I have private medical care, but still not worth doing owt) he said come back if I need to and if it gets worse to the point I can't have sex.....he will consider the knife....
Good luck guys !
Quote from: DannyOcean on February 28, 2011, 09:43:20 AM
This might be a separate thread but I'm curious about the reasons for taking Cialis daily instead of every other night? My understanding is that Cialis works for a period of 48 hours (this might be only for producing erections though, not for the purposes we here are taking it for). I could understand daily Viagra but Cialis is different no? Mostly concerned with the cost and also potential long-term health issues associated with taking too much Cialis/Viagra (or taking it too often).
I asked the same question to my urologist, and he told me following (he simplifies a lot):
Cialis is supposed to work 36 hours (20mg)
taking 5mg would give 36/4 = about 9 hours,
so thats roughly one nights sleep.
The benefit of taking it is making sure you have erections in your sleep opposed to having no erections at all would harm your Penis over a longer period.
(I personally am not so sure about the hours... but somehow the explanation makes sense)
L.
Tod, Your doctor is obviously unaware that ALC WAS demonstrated to be effective in a clinical trial in Italy years ago, although that research left a lot to be desired. More recently, Pentoxifylline has been proven effective in a very well done clinical trial in Iran and last year CoQ10 was demonstrated to be effective in another very well done clinical trial in Iran. Both Pentoxifylline and CoQ10 work very well and have totally reversed my Peyronie's which continued to advance for years. What you do in your situation is up to you, but you very well could end up with the knife if you listen to the docs you are now listening to. There is lots of money in surgery and they love to do them. But a lot of Peyronie's surgeries leave the patient scarred for life in more ways than one. - George
I Was given the same directions by a urologist .He said the stuff was exspensive and that is the truth.So he said to cut the pills in fourths if I could.I was experiencing ED and so I followed his advice.When I was not having erections at night then I would take a piece of the pill.At 24.00$ a pop makes sense.
I quickly realized with the price tag this was not going to work.I found an online pharmacy at 3.00$ a pill I now take a full 20 mgs when needed.I can not tell the difference between brand name or generic.If you feel the need to continue cialis do not worry its out there as a bargain if you want it.
Fubar
It's great that you felt listened to, but it certainly won't hurt you to be as proactive as possible in terms of oral and mechanical therapies. While improvements can take place on their own in some cases, typically not much good comes from a wait and see approach. Pentox and the like would, in my view, put you in a better position.
Remember, there is now NEW research showing that Cialis works NOT ONLY by increasing nocturnal erections but ALSO by other previously unknown pathways to actually REDUCE Peyronie's scar tissue. This indicates that Cialis may have therapeutic qualities that other PDE5 drugs may not have. In any case for this scar reduction capability to be effective requires continual tissue exposure to Cialis on a 24/7 basis. - George
Quote from: George999 on March 24, 2011, 11:57:22 AM
Remember, there is now NEW research showing that Cialis works NOT ONLY by increasing nocturnal erections but ALSO by other previously unknown pathways to actually REDUCE Peyronie's scar tissue. This indicates that Cialis may have therapeutic qualities that other PDE5 drugs may not have. In any case for this scar reduction capability to be effective requires continual tissue exposure to Cialis on a 24/7 basis. - George
Maybe a stupid question, but does that meen wou should take more than 5mg/day?
(36hours / 4 =>9 hours)
something like 1 every 1 and 1/2 days?
Luc
These results were achieved with 5mg per day. That is what I would go for in order to achieve optimal results. These researchers are the best of the best and they think long and hard when they establish these protocols. I wouldn't attempt to out think them on things like this. Taking more is MUCH MORE LIKELY to bring harmful unintended consequences than it is to provide benefit. - George
the only spot of pain I would get was on the left ventral side, running along the corpus spongiosum. This area would always be inflamed just by gently touching it or after sexual activity. It seemed to feel just as raw and painful as the first day I noticed it, almost 7 months ago. It also got much worse when I tried traction, so I quit that and the pain went down to normal. I then tried the ved, and the same thing happened. I just decided to give up everything, even sexual activity, and just focus on oral therapies. Hopefully it won't come back. I plan on keeping my current plan for a while, then slowly add more normal sexual activity again, that's the best I can think of.
Thanks Guys.... Its good that we can have a good debate on this.. The Pentox was mentioned in the clinic... He certainly didnt mention Iran ! Although he say many were taking Pentox with varied results and thats where the "nothing proven" statement came from....
Can I get Pentox in the UK ?
Tod, Look here -> https://www.peyroniesforum.net/index.php/topic,1004.0.html (https://www.peyroniesforum.net/index.php/topic,1004.0.html)
That is a text copy of the study from Iran. It is pretty convincing. Does everybody benefit? No. At least not equally. But most do. And really, perhaps all do because it most likely prevents progression and never really gets credit for that. Doctors are at times incredibly stupid. They will give a patient Pentox for Peyronie's and Pentox will halt the progression of the Peyronie's. The patient will come back with no further progression and then the doctor will say that Pentox is useless because they are not any better. But the same doctor will give the same patient a blood pressure pill and the patients blood pressure will not improve over time, it will only be "under control". Remove the pill and things will get worse, the same as with Pentox. But because blood pressure is measurable, they will support its use, but the effectiveness of Pentox is not measurable. In any case, the Iranian study is PROOF as to that effectiveness. Additionally, doctors don't worry about "varied effectiveness" when it comes to cancer treatments. Lots of times they don't work, but doctors keep on prescribing them, often at great expense. So you are going to need to be assertive and, with the aforementioned study in hand, demand Pentoxifylline as it requires a prescription. It is an inexpensive, safe, well understood, easy to take medication with relatively minor potential side effects. As far as dealing with the NHS on it, newguy, UK and a number of other Brits out there can help you on those issues. But for sure you should be on Pentox unless there is some individual reason not.
There is also the CoQ10 study. Here is the abstract:
Quote
Original Article
International Journal of Impotence Research , (19 August 2010) | doi:10.1038/ijir.2010.20
Safety and efficacy of coenzyme Q10 supplementation in early chronic Peyronie's disease: a double-blind, placebo-controlled randomized study
M R Safarinejad
No oral medication has proved to be clearly beneficial for Peyronie's disease (Peyronies Disease). We investigated the safety and efficacy of coenzyme Q10 (CoQ10) supplementation in patients with early chronic Peyronies Disease. We conducted a randomized clinical trial of 186 patients with chronic early Peyronies Disease. Patients were randomly assigned to either 300 mg CoQ10 daily (n=93) or similar regimen of placebo (n=93) for 24 weeks. Erectile function (EF), pain during erection, plaque volume, penile curvature and treatment satisfaction using patient versions of the Erectile Dysfunction Inventory of Treatment Satisfaction (EDITS) questionnaire were assessed at baseline and every 4 weeks during study period. EF was assessed using International Index of Erectile Function (IIEF-5), and pain was evaluated with a visual analog scale (VAS, 0–10). All patients also responded to a Global Assessment Question, 'Has the treatment you have been taking during this study improved your erections?' After 24 weeks, mean IIEF-5 score, mean VAS score and mean EDITS score improved significantly in patients receiving CoQ10 (all P<0.01). Mean plaque size and mean penile curvature degree were decreased in the CoQ10 group, whereas a slight increase was noted in the placebo group (both P=0.001). Mean index of IIEF-5 in 24-week treatment period was 17.8±2.7 in the CoQ10 group and 8.8±1.5 in the placebo group (P=0.001). Of the patients in CoQ10 group, 11 (13.6%) had disease progression vs 46 (56.1%) in placebo group (P=0.01). In patients with early chronic Peyronies Disease, CoQ10 therapy leads plaque size and penile curvature reduction and improves EF.
Thus, in my opinion, you should be taking CoQ10 as well, or the reduced Ubiquinol form if you are over 40. CoQ10 is over the counter. It is expensive and the Ubiquinol form is more expensive. But it works. The studies indicate success with both Pentoxifylline AND CoQ10/Ubiquinol, and both of these have done wonders for me over time. Think about it. - George
Hello - Here is my story: In January of this year, having sex. I think my girlfriend was not quite ready, and I tried to hard to penetrate. My penis suddenly and painfully bent while making a "crack" noise. I did a lot of research on-line about penile fractures and figured that was not quite what happened as I did not lose the erection, we were able to continue sex, and it did not have the immediate swelling. I waited to see a urologist until late February and he concurred that it was not a penile fracture, but I did injure it. He told me that while it was not Peyronie's Disease, my symptoms and any treatment would be similar to that of Peyronie's.
I have a hard "knob" that can be felt when flaccid. When erect, my penis bends upward at that spot. We have continued having sex, not as frequently, as it is still somewhat tender there. I take vitamin E daily.
I am looking for any advice that might help me understand my condition and what kind of treatment would help.
I appreciate your response.
Do you know why he said it was not peyronie's? I believe I may have bent my penis during sex and this is why I now have peyronies! Many of the guys on here did the same! I would say it is the most common cause. It could heal up on it's own though and may just be swelling and not a scar. I believe myself that you don't have to bend it much to cause damage. My Uro said it is a genetic disposition which some men have. I believe it must be because I've seen porn stars bending their fellas much more than I have ever done and they seem to be ok.
Bend, I would suggest you get a "second opinion" from a sexual function specialist. General urologists are hopelessly in the dark when it comes to Peyronie's. Vitamin E is useless. You would be much ahead to be taking 300mg of CoQ10/Ubiquinol daily, and hopefully find a physician who will prescribe Pentoxifylline for you until this thing is figured out. - George
I agree with George on this one! You should try and take some other oral remedies such as Pentox and CoQ10. Not a great deal of evidence that these work but some of the guys on here it has helped and there is no harm in trying. It seems weird that the Uro would say you have the symptoms of peyronie's and he is going to treat it like peyronie's. When I searched on the net I knew I had peyronies because there is not much else it could have been with the symptoms I had.
Quote from: Worried Guy on April 01, 2011, 08:53:18 PM
Not a great deal of evidence that these work but some of the guys on here it has helped and there is no harm in trying.
This is not solid evidence?
https://www.peyroniesforum.net/index.php/topic,1004.0.html (https://www.peyroniesforum.net/index.php/topic,1004.0.html)
And there is a very well done CoQ10 study as well. Most urologists are totally ignorant of these studies because they don't keep up with research. They are subject their patients to unnecessary pain and debility as a result.
George, I am currently taking both pentox and CoQ10 and I am really hoping it will help stop progression and possible improve my situation. That said, there is not much evidence for it. A well carried out but small study in Iran does not hold that much weight. Look at the ALC study from Italy. We grab hold of these studies and hope that it will help us but in reality scar tissue is very hard to treat. The only real way to improve the situation is VED, traction or surgery. Levine admitted to chef that he does not hold that much faith in Pentox. My Uro in London is very up to date and carried out the VED study and he accepts that it is worth a try but is not likely to do much. There are also studies for hyperthermia which show great benefits but why is nobody suggesting we try it. Any improvement is amazing even if it is only 5 degrees but I'm not going to convince myself it will solve this crap because it will not.
Thanks so much for your quick responses.
If I understand correctly, what you are saying is that I have Peyronies which was caused by my injury. I think what my Urologist was telling me was that I didn't develop it in a way that he was used to seeing and that normally an injury such as mine would have been a penile fracture, which would have been a much more traumatic injury requiring immediate surgery. The fact that I could still achieve erections was evidence of that. The Urologist didn't have much to offer in the way of treatment other than giving it time and taking vitamin E, but during the examination he did bring in one of his colleagues, the resident "pecker expert" to take a look. The pecker expert is a urologist that had spent a lot of time as an army doctor so had seen many cases of injured and bent penises. I am due back for a recheck soon and I have a lot more questions for them this time.
The main thing that I want to know, is how long something like this takes to heal and will it heal completely or partially.
Also should note that I am taking Alleve (Naproxen Sodium) daily to help with any inflammation. I am 42 years old and live in US.
Hey George, I guess I must have got out of bed the wrong side today. I'm in a bit of pain again which is annoying as I've been pain free for 2 weeks and I thought I had moved into the next stage of this. I'm also annoyed as my Uro cancelled my appointment for next week and I have to wait another 5 weeks to see him. I understand what you are saying and uro's should be trying everything as even a little help is better than nothing. Pentox is so cheap that every western country can afford to dish this out and if it stops progression for some men then that is worth it. Coq10 should also be suggested instead of Vit E. Lets face it, Dr Lue has been giving out pentox now for 9 years and still it has not caught on and I had to go to 2 Uro's and had to go through the studies with them and tell them all about it. I just believe Uro's don't see pentox as worthwhile because it only has mild benefits for a small percentage of men. It's not that they had not heard of it they just thought there was no point. If you look at the studies the VI injections show better results yet most men on here don't seem to agree. I've been taking pentox now for 1 month and Coq10 for 2 months so lets hope in the next few months things start to get better. I'm happy to take it for a year to see if it works and after then I will accept that I will have to try other areas. I'm due to start VED next time I see my Uro so a combination could be the key to improvement.
Bend, I don't want to say you have peyronie's because you may not but your symptoms seem to point to it. A trauma followed by hardening and a bend are all classic symptoms. Even if it is peyronies there is a chance it could get better on its own with time. You should go back and see what he says!
All I can say about this is that I have achieved amazing things with my health through mimicking research treatments. It doesn't always work, but I am extremely happy to get 10% out of it. It has meant achieving cures or near cures for multiple health issues that multiple doctors swore to me were incurable. So for those of you who reject that approach, enjoy your malady. I prefer to do everything in my power to find healing, and I have not been disappointed in that approach yet. There is absolutely no evidence that Vitamin E helps with Peyronie's in any significant way. And taking high levels of vitamin E on a sustained basis can result in serious health risks. And yet the same doctor who refuses Pentoxifylline and poo-poos CoQ10 will instruct the patient to take high amounts of vitamin E. How stupid is this? You like this route, you can have it, no way I will board this wagon though. Now way! - George
I agree George and I think it is great it has worked for you. What I think we need to see before we can say for sure that it works and then get the uro's on side is multicenter trials containing over 1000 people rather than 1 study from Iran. Not that I have a problem with Iran but if the study came from Sweden or Canada for example it may convince more uro's. These trials are expensive and are unlikely to happen because the experts don't believe oral therapies can help. Dr Lue needs to be pushing for these trials as he is the one who introduced pentox to us. I'm guessing he is trying. Even in the Iran study pentox worked for less than 40% of men and it does not even tell us by how much. Perhaps the improvements were so small they were negligible anyway but are still shown as positive. I think it is important to be positive but people should not be convincing themselves, as I did, that pentox will be our savior. If it helps great but lets be honest it is a stab in the dark. Better than Vit E anyway as you say. People give it a go as realistically it is all we have right now. Sorry bend i'm off topic now.
ok, I am not sure if I can glean any advice from your debate.
But I did look through a lot of other threads in here and went to the Vitamin Shoppe yesterday and picked up CoQ10/Ubiquinol, L-Arginine, and Acetyl L-Carnitine. I will take these in addition to the vitamin E and see what happens.
Also, my urologist advised me to avoid sex for about a month, which I sort of did - it was very difficult anyway and I lost a lot of interest because of the injury, it made things awkward and sore. The past few days, however, have been fantastic sexually. The bending is not nearly what it was. I am thinking that I am past the painful stage and the more erections and activity I have the better. My girlfriend is in total support of this method of 'treatment' so I am feeling a lot better about it.
Quote from: Worried Guy on April 03, 2011, 05:57:45 AMEven in the Iran study pentox worked for less than 40% of men and it does not even tell us by how much.
Did you read the full study or just the abstract? I thought the diagrams and tables in the full study made it pretty clear how effective Pentoxifylline was and I also thought those statistics were pretty impressive. I also think that the conclusion that it "did not work" for 60% of the study participants is pretty subjective. 1) There is no way we can really know if those 60% may have avoided progression by being on Pentoxifylline, and actually I believe that the comparison with placebo indicates that they did avoid progression. You would call that "not working", I would disagree. 2) The study period was for a limited amount of time. I longer time period would likely have produced better results.
Certainly more studies are needed, but are we to wait years for them before trying an inexpensive and innocuous drug like Pentoxifylline? Not me! - George
I think the pentox study was the best out of all of them, given the large sample size (something like 220 patients total). Where there might be confusion on the results is that:
1) the mean duration of people that presented with the disease, being around 12 months or so, I think the same was true with the coq10 studies. If someone has a fresh case of Peyronies Disease, being let's say < 6 months, the results of only "13% getting worse on pentox" may be quite different, since the disease would most likely be closer to a state of stability with a mean of 12 months.
2) The degree to which there is actual progression of the disease, meaning continued inflammation of penile tissue and continued formation of new scar tissue vs. contraction of existing scar tissue. For instance, I may have no more scar tissue than when I first noticed my symptoms, but the existing scar tissue may contract over time, and give the appearance that things are getting worse, even though their not. Let's face it, scar tissue in all parts of the body has a tendency to contract to some degree. It may be inevitable that it happens to all of us regardless of treatment within the first few months or so. If it continues for years on end, then I guess you can conlude that the inflammatory process is continuing.
3) Measurment error: I know that a lot of studies measure patients' angles, but I've noticed even when measuring myself, that there is a range of deviation of 5-10 degrees that can occur due to erection quality and all sorts of factors, so there may be some discrepency, not just in these studies, but for all Peyronies Disease treatments.
I also want to clarify that Dr. Levine doesn't have a lot of faith in any one treatment, which is why he uses VI's and traction along with orals. The benefits that the majority of men on here see from pentox is definitely incresed erectile quality, prevention of calcification, and stabilization at least in the longer term. I think there's only a few exceptions that have been on here for years with no stabilization from pentox. If you see additional resolution of the disease, then I think that's just an extra add on that a lot don't recieve on pentox alone. just my 2 cents.
My penis curves to the left and has a very slight curve upward. My urologist can feel no plaq, and I've never really experienced pain from it. I've always had a little bit of a curve to the left, but I believe it got worsened after I experienced some trauma about 2 years ago. Or it could just be that I'm just noticing the curve more after having experienced trauma. My urologist speculates that it could just be congenital, but my penis does take on an hour glass shape at times which makes him believe there could be some scarring. I've been taking Pentox for the past 6 months. I also completed 6 months of using a VED a few weeks ago, and have been taking CoQ10 for the past 3 or 4 months. Doing all of this, I have not noticed any change in the curvature of my penis.
My urologist told me the option of the surgery where he would shorten one side of the penis to make it straight is available to me, OR I can keep taking the Pentox. But if I've been taking the Pentox for 6 months and have noticed no change, is it even worth continuing? I just have no idea what to do.
Nebula
Everyone must make their own decision in their own therapy.How long are you willing to stick with it?There are many here that have had Peyronie's for years that are seeing results with the same therapy you have chosen.From my understanding it can take along time to see results.Once you have surgery it is perminant .No matter what you will then have to accept the outcome.Then you may pick up where you left off with the therapy you chose ,going back to it.
I do believe that all these things help in this disease.I would give it more time depending on your age and condition of your body and how long you have been living with this.For me I have diabetes and other markers men seem to have that have this disease.At times things get very taxing and think, the hell with it just go get an implant and be done.Having an implant is not out of the question for me as the penis is usually the first thing to go in a man with diabetes. I'm giving therapy more time I have seen subtle changes and that is enough for me. To keep going on.Times get tough and I think this going to drive me crazy.
Friends on the forum who I expressed this torment to help alot.They remind of there inspiring history with this from their post and through personal pm's.I'm reminded that that the forum is growing rapidly meaning we are gaining recognition and suffers .Making this disease much more visable to the public and researchers. Auxillium has taken interest in our disease most likely for profit.Them spending time conducting this study on Peyronie's is bringing it to the public and other researches are watching.The biggest spotlight on this disease is happening now!
Be sure to take time to make your decision.I know I am, I will continue using what has helped many until I am personally exhausted and see no further use of what I feel is helping now.
Fubar
Thanks for the reply. I'm trying to take my time with it. But I'm just wondering if there's a point for me to continue even taking the Pentox after taking it for 6 months with no signs of improvement. Has it taken anybody on here longer than 6 months of taking Pentox to notice improvement with it?
How much of a curve is it? Do you have pain at all? What makes you think you are still injured from your intial trauma 2 years ago, other then a possible little hourglassing or slightly more curve? If your still in your youth, please don't jump the gun, expecially if "it's not that bad." Like Fubar said, once you do the surgery route it's permanant.
How serious are you about surgery? I think surgery is a last resort and there are many things you should try first that could work wonders. But if your curve is inherited, then no amount of anything except surgery is going to help you, other then stretching or VED.
I agree with crashbandit. Considering surgery greatly depends on the severity of the curve. No one who was once straight, wants any type of curve at all. But curves up to 30 degrees or so are very functional without problems. Surgery is only recommended as a last resort AND only if there are issues interfering or preventing intercourse.
Ive seen dr axilrod at university of pennsylvania had a penile vascular study done that says i have inflamattion in the left side of my penis on the underside but it has not become scar tissue yet, I went to see dr. michael metro in philadelphia PA he injected medicine to give me a erection and said i had a bout a 10 degree curve to the left i also expereince pain with erection or when flaccid and my penis twists to the left in a restful state when flaccid iam constantly trying to straighten it throughout the day it hurts and when erect it bends slightly to the left 10 degrees and sometimes hard to keep an erection left side is a little shorter with erection i think or maybe it just looks shorter being that the pain anxiety and physchological stress makes it hard to get an erection. dr. michael metro prescribed me pentoxyfylline on 4/6/11. to 400 mg 3 times a day for 6 months and then hes going to reevauluate me, what else should i do to combat this disease what else should i take im very desperate please according to the penile vascualr study its not scar tissue yet just inflammation what shoudl i do to arrest it and reverse it??? please help
It's very difficult but you should do what he says. Leave it six months with the pentox and see if the inflammation goes down. You are in a similar situation to me. I have pain when flaccid and I have a 10-15 degree curvature to the left. You can try some supplements which you don't need a prescription for if you want. Some of these can be a little expensive. Don't bother with the magic cures you see on the internet because they don't work. CoQ10 may help you a little and ALC could be of benefit. It is a very worrying time but you are doing the right thing. Don't do anything to injure it again. Take a break from trying to straighten it during the day. I kept feeling my inflammation in the hope that I could feel it getting smaller but it is not going to go away overnight. If in 6 months time it has not got any better you may want to try traction or VED.
Dr. Metro is on the right track with Pentoxifylline. You are VERY fortunate that you got a physician who knows what he is doing. At this early stage the Pentoxifylline *should* do the job for you although it may take more than six months. When you eventually stop taking it, if the pain recurs, get back on it again immediately so as not to sustain more damage. Additionally CoQ10 may well provide additional benefit. Pentoxifylline and CoQ10 are the ONLY substances with solid research demonstrating benefit. I would not recommend that you waste your time at this point on anything else. Pentoxifylline is the top performer in terms of Peyronie's treatment. It doesn't get any better than that. Later on, if you need additional help, you should look into VED and traction. But right now, stick with the Pentoxifylline. - George
good advice and it definetly takes patience. i am used to doing everything to the extreme and in this case ;peyronies it has its own time frame and u wont see results over night and will only get discouraged if that is your mentallity towards it. it took me months to realize this and so many times id find my self focusin on the negative; because we are all used to instant gratification with everything. awesome that u were seen so soon before scarring and that u got on pentox ive been to 2 uros and the first guy str8 out said we dont no much about peyronies and didnt offer anything the 2nd guy only gav me a script for verapamil
See my response to your other post. You would be wise to start traction or VED exercises during this time to keep your conditioning from worsening.
I don't know if this is a improvement or not, but wanted to know if any of you have experienced the same thing. My plaque is on the right side of my shaft about a half inch down from the head and starts at the bottom and comes just a bit more then halfway up. Above this I have my dent that doesn't fill right. The best way I can describe the plaque is that it feels like a tic tac cut in half length wise or maybe a speed bump. I've recently noticed that the plaque seems to have flattend out kinda like if the tic tac was smashed. I still have pain and nothing else has changed except maybe a slight filling up right under the head very slight though but enough to feel. I still have lots of pain and discomfort which has seem to been more noticeable than normal. Still no curve just the dent. I'm still taking all my supplements like pentox and doubled the dosage after the one thread about dr lue having people do 2 pills 3x a day. Attached is a very rough drawing to give you a better picture.
Stupid question... did you experience the "filling up " after doubling the pentox dose?
I actually started to notice it before doubling the dose. But again it's so slight that sometimes I question if I'm just seeing things. Today I have been having all kinds of weird stretching sensations coming from the plaque, I started doubling the pentox a week after the post came out about dr lue doubling the dose. I actually woke up one morning this weekend and part of the spot that doesn't fill up seemed almost normal this was first thing waking up but then with in a few minutes of walking around it was back to just the slight bit I've been noticing. I also take half a 50mg viagra pill before going to sleep I don't know if that has been causing some of this.
Hey, man:
i got this thing back in 2002.. i was 22 at the time--not much older than yourself....THERE WAS NOTHING BACK THEN.....I MEAN NOTHING .......it was a nightmare: take vitamin E, here's a crappy brochure about your hopeless condition with some elderly couple in a forest rendere in cloudy pastels on the front cover.....good luck.
you're so lucky that there are greater treatment options available today.
if i were you i would also look into cialis: when i was your age i noticed that the onset of symptoms coincided with a slight , change in erectile quality...i was stressed out at the time. nocturnal erections are very much so important to your overal penile health. the best thing to do is to project yourself into the future about a year and half to two years: where will i be two years from now; how is this going to feel two years from now. you'll have plenty of opportunities to have great sex, this is not the end of your sex life and you'll have decades of sexual life left....what i found most agonizing was the prospect of permanent sexual handicap throughout my twenties. you're young your body will bounce back from this thing more quickly than in the body of an average 45 year old peyronie's sufferer....plus you have all of these new technologies to help moderate and hopefully annihilate this disease process. so hang in there, man. the goal is ultimately to improve your overall health: work out in order to increase circulation in your extremities , drink a lot of water, pay a great deal of attention to what your eat.....you want your total organism to be as healthy and as robust as possible. at 19 we're usually not obsessed with these issues but unfortunately (or fortunately rather ) you'll need to begin to pay attention to this stuff.
how long did it take for you to recover did it get better? im taking l arginine pentox 400 mg 3 times a day and i hope it works? and i get nightime erections should i still lie to my urologist and say i have ED just to get cialis? or can i buy it online without it being a scam? thanks for your input man
i use bout 1600 mg 4 400 mg capsules of acetyl l carnitine 2g of l arginine and about 400 mg 4 capsules of coq10 fish oil b vitamin d3 viamin throughout the day. id def get on the acetyl l carnitine as ive read of its effectiveness in studies on here somewhere and from other members etc. its kinda tricky to find least for me cuz the amounts are low at a lot of stores. so i get the ones from wal mart they are 400 mg on carnitine and i think 200 mg of alpha lipoic acid (whatever that is i guess its good for the brain or somethin. but if i didnt get that combo capsule then i would b buyin the 100 mg capsules and blowing a ton more money
Quote from: jackwert on April 19, 2011, 03:49:38 PM
how long did it take for you to recover did it get better? im taking l arginine pentox 400 mg 3 times a day and i hope it works? and i get nightime erections should i still lie to my urologist and say i have ED just to get cialis? or can i buy it online without it being a scam? thanks for your input man
Have you started on pentox now jack? Any update.
Hi, I first noticed a bending of my penis, about a year ago. Frightened me actually. Doctor told me Peyronies. At first recommended a cream. Way too expensive. Like 800 bucks. When I said no, suggested getting shots. Five in total. I have to buy the pre-filled needles myself. He would inject it. I passed. Now I'm back at square one. Don't know what to do. Am married. My wife's cool about it. All this freaks me out. I'm 49 years old. No problems till now. I live in Houston. Have basic insurance. Wife is disabled. On a fixed budget so to say. Any ideas?
GB77099
In short, the best current treatments are Pentoxifylline, Ubiquinol, and VED, not necessarily in that order. All of these treatments are good and work well.
1) Pentoxifylline is a prescription med. It has historically been used at 400mg 3X/day and is now being tested at 800mg 3X/day and results seen at the higher level are significantly better. Pentoxifylline is an inexpensive, very safe, easy to take FDA approved medication BUT it is NOT approved for the treatment of Peyronie's although there is a full blown high quality research study demonstrating its effectiveness. Many of the members on this forum are having success with Pentoxifylline. It takes many months to see results, but it DOES work. More importantly, it STOPS PROGRESSION of the disease. The problem is that most doctors refuse to prescribe it claiming it is "experimental" or "unproven". One usually has to go to a Peyronie's or Sexual Medicine specialist to obtain a prescription although more and more enlightened uros are prescribing it these days.
2) Ubiquinol is a very expensive over the counter supplement. It is typically used at 100mg 3X/day. Ubiquinol has an excellent research study demonstrating its effectiveness that was performed by the same research team that did the Pentoxifylline study. A number of members of this forum are now using Ubiquinol and finding it effective. Like Pentoxifylline, it takes a LONG TIME to actually see results, but over the long term it DOES work. Some of us (myself included) are finding success using it in conjunction with Pentoxifylline.
3) The VED or Vacuum Erection Device. Medical grade VEDs have been used successfully for years to treat Peyronie's. It is easily the longest used treatment for guys on this forum. Anybody here who uses a VED will tell you that they do the job and do it very well. I really can't say enough positive things about the VED even though I have never used one myself. The results are very good and there is plenty of support here in the how to get started part.
Though there are other options here, the above are the best in class and really offer the most bang for the buck and the least risk of problems along the way. Don't hesitate to ask more questions, there is lots of help waiting for you around here. - George
yes ive been on pentox 400 mg 3 times a day since 4/7/11 and im still taking it i havent seen a difference yet
GB77099,
Pentox helped get rid of significant pain that I was experiencing, although it did not do much to change deformity (note: I have hourglassing and shortening, no real curvature to speak of, so that my have something to do with it). Also, pentox is dirt cheap. I really recommend you give it a try. George's advice is solid. The only thing I'd add is to get yourself in good general health. Hit the gym, start running, whatever. I got this at 29 (3 years ago, time flies) and getting myself in good shape was vital in conquering the psychological aspect. I'm to a point where the condition is a minor annoyance and I'm too busy with my 7 month old baby to worry about it anyway. It gets better, trust me on this one.
-Skjald
Quote from: jackwert on April 24, 2011, 11:49:26 AM
yes ive been on pentox 400 mg 3 times a day since 4/7/11 and im still taking it i havent seen a difference yet
It's very much a long term treatment. Hopefully you'll eventually see improvement, or limit potential future damage!
Thank you both Skjald and George. Very cool of you passing that along. Plus I got a private message with a Doctors name from here in Houston. That's very cool also. I saw my primary care. She was totally useless. I found the guy I'm seeing now via Google. Glad I found this website.
George999
The 3 point protocol you advocate here is certainly the concensous of learned members such as yourself. I am on that protocol as you may recall.
But newer members may not have a clear idea as to exactly how and when to make use of the VED. I have been following the 26 week protocol , as per my spreadsheet , and approaching the mid second round. It is gruelling but once you get used to it , it becomes habit.
Can you detail this for the newer members as I think the VED thread as I knew it , has gone from the cover page. Last week my original Uro ( the no Pentox one) said just use it 2 or 3 times a week. I am doing more but anything you can add to that George?
Thanks
Mike
Quote from: Skjaldborg on April 24, 2011, 12:54:39 PMThe only thing I'd add is to get yourself in good general health. Hit the gym, start running, whatever. I got this at 29 (3 years ago, time flies) and getting myself in good shape was vital in conquering the psychological aspect.
Yes! Yes! Yes! Throw out all the unhealthy food (refined carbs, trans fat stuff, etc) and get plenty of healthy exercise. Peyronie's is an inflammatory disease. ANYTHING that promotes inflammation is only going to make your Peyronie's worse. Everything from big bellies to chronic anxiety can fuel systemic inflammation. The more you do to get healthy, the better your Peyronie's is going to respond and get off your back. And you might as a result avoid things like strokes and heart attacks which can ruin your day in a worse way than Peyronie's, as bad as it is. - George
Quote from: mike67 on April 24, 2011, 08:26:03 PM
Can you detail this for the newer members as I think the VED thread as I knew it , has gone from the cover page. Last week my original Uro ( the no Pentox one) said just use it 2 or 3 times a week. I am doing more but anything you can add to that George?
Mike, I am not the right guy for that task. The real VED expert around here is Old Man. I would suggest that GB contact Old Man for expert guidance on obtaining and using a VED. There really *should* be something in the Resource section covering VED use. Again, Old Man would be the one to put something like this together if he has the time. I am mostly into oral treatments side. - George
Right you are George. I'll look into it further and get through to OldMan. He was very helpful in getting me started last July.
Mike67:
The protocol for the one cylinder and three cylinder VEDs is still shown under the VED board section on the home page.
Newcomers should be directed to read the many posts/threads there for a lot of valuable info on the VED. Will be glad to assist anyone with where to buy the medical grade VEDs at a reasonable price.
Old Man
If using Cialis (I'm currently using 2.5mg a day as directed by my Urologist - this could be because I achieve erections ok so he doesn't feel I need to take 5mg?) then do people think it it still necessary to take L- Arginine and as aren't they doing a similar job, but with Cialis being more effective and also having potential to reducing scar tissue?
I'd appreciate any thoughts on this.
I've just paid a small fortune for Cialis on private prescription here in the UK - I did so to get the real deal first time around but may look at generics next. This whole treatment plan costs a small fortune.
TM
Got a brand new urologist since last week.
Seems to be a nice guy and pretty competent. (he wrote also an article in Levine's book back in 2007) . As I pay him 150 Euro per consultation, he listens and gives good answers. (At least most of them make sense)
He told me about cialis (I asked him the question).
"I dont mind you taking it, as Peyronies Disease will give you some ED on the long run. It will make you feel better, and that's the same thing". But he doubts about cialis eating up scar tissue. (he said he thought that anything favoring blood flow will have the same effect on scar tissue. But only on new plaque (thats what he said)
He continued saying, that in my case it wouldn't make a difference as the plaque is allready calcified. In the beginning stage it might have an effect .. (and he added: on some people)
Now I'm on it for 2 months and am going to continue hoping he is wrong.
Luc
Luc, Your best bet in dealing with any calcification issues are long term Pentox and Ubiquinol. Pentox has been shown to dissolve Peyronie's plaque, but it takes a looong time to do it. You have to be tenacious. - George
GB77
How did you get on with your doctor in Houston? I am also in Houston and looking for some advice?
G
I have 4 areas of scar tissue / plaque 2 on each side. They are most noticeable when flacid but can be seen while erect to. I was wondering if this sounded like it made any sense. These first appeared about 2 weeks ago and oddly enough when I use ice on it for 5 minutes or so they go away and then about a minute or 2 later they come back. I was wondering if this is because right now it is just inflammation or what it is.
If it shrinks when you use ice on it, it is most likely hard swelling caused by inflammation. This is really the best time to be using serious inflammation lowering strategies like Pentoxifylline, Ubiquinol/CoQ10, etc. - George
I am using Coq10 from walgreens and l Arganine. You think those are good options? Also I'm going to the uro June 9th if he does not want to prescribe pentox is it viable to order it online? Thanks alot for your response.
If you are older than 40 or so, I recommend going for the more expensive Ubiquinol. Under 40, CoQ10 should work just fine, the younger you are, the better it works. CoQ10 from Walgreens should be OK. There are guys here who get Pentox online. I don't. I feel it is better to get a diagnoses and then find a doc who does prescribe Pentox and get a referral to see that doc. - George
Some may have read my posts, but I'll summarize everything here. I'm single, 48 years old and have led a very active sex life. I was diagnosed with Peyronies about 9-10 months ago. That was on a follow-up visit for frequent nightly urination issues. I had noticed an upward curve during erection that other members have described, "seemed to just happen overnight". I also felt hardened areas in a few parts of my shaft and unlike ever before my entire unit retreating back into my body and beneath the foreskin. And I am circumsized.
My urologist for over 30 years, Dr. Paul immediately recognized and diagnosed the disease and prescribed Verapamil 15% topical gel for a period of 9-12 months. I religeously applied the ointment and as others have reported seemed to see some improvement, especially during the flaccid state. I had/have yet to experience painful erections and was able to preform sexually and achieve climax. Perhaps the effective properties of the gel were more psychological than anything else, but the old boy was nice and limber during the flaccid state and no longer retreated back into it's skin sheathe, thus I figured something was working. And I could still function. However the upward curvature when erect became more prominent as the condition obviously progressed. After reporting this to my Uro he suggested that we cease the topical Verapamil after only 6 months and proceed with Verapamil Injections (6 sessions).
That's when I found this forum about a month ago and my entire outlook changed. I immediately realized that the treatment successful for some, was not necessarily the same for others. And I began to realize the gravity of Peyronies, the bottom line being there is no "magic pill or treatment" that was going to cure this condition and this could be real bad news for me and future sex life. There is no cut and dry treatment or cure. Only that I needed to read, learn from those inflicted and find as many options as possible. Then after last weekend with my new GF when I was engaged in sex that due to my condition and curvature could only perform in certain situations (oral being best) started to really get pissed and make decisions. That brings us to today.
I printed out the entire recent "peyronies report" recently posted here by Luciano I believe. I hand wrote every treatment option documented here and armed with this went to see Dr. Paul. I really had no idea how much he knew about Peyronies, but left somewhat impressed. I expressed my concerns about his treatment regimen and the Verapamil Injections. He agreed that it doesn't work for everyone but showed me a hand drafted small piece of paper of one of his current patients who drew picture of a 45 degree angle before the injections that was now no more than a 15 degree upward curve after the VI treatment. Again, that was one patient and not all. I expressed my concerns and desire to try other alternative treatments before the VI showing him the report and encouraging him to take the time to read what others suffering from this disease have to say. He is also convinced that none of my scar tissue has calcified as of yet.
Well he took the report, but seemed hesitant to take the time to view this forum being it wasn't sponsored by a doctor. We agreed that a less invasive approach should be tried first before anything else. We also discussed the fact that I was taking Coumadin (warafin) daily and that made me a bad candidate for VI in the first place and if I were to want that option I should be off Coumadin for some time prior.
I was surprised that he was not very familiar with the use of Pentox, but after pointing it out and letting him read the "study", he basically told me that since I'm already taking a blood thinner that in his opinion it did basically the same thing if not better. This echoed the same response I received from my Cardiologist. That being although similar, Coumadin is a much more aggressive blood thinner and could be more beneficial than Pentox. I was told to consult Cardiologist to see if Pentox is a viable option.
We eventually basically came to a mutual agreement as far as a treatment regimen when all said and done. And he also referred me to a friend and colleague in the SF Valley (papers in car or I'd post name) who he said was familiar with many of my hand written treatments that were presented. Looking forward to seeing this specialist and reporting here.
For the time being here is the the treatment regimen: Blood thinning agent, in my case Coumadin (that may change), 5-mg of Cialis daily (a fight with Anthem/Blue Cross ensues for benefits), VED device, I couldn't secure what "Old Man" suggested, as my Uro has an outfit who comes out and customizes the VED to a perfect fit. And for about $400. And yes, as much as many here, including myself said is useless, Verapamil 15% Topical gel. Then again, I was never told to expect any real results until after a year of use (I've read where some here showed no progress with Pentox for 4 years), so why the hell not, knowing I'm getting somewhat more effective penile use in the meantime and can piss without spraying everywhere.
We also discussed possibility of eventual surgery if all else fails and collagenase/Xiaflex is a pipe-dream. The Nesbitt Procedure was not an option. I'm not that large sporting 6 1/2" now as it is. We did discuss the excise and graft procedure, and I was thrilled to discover he performed it before, using facial or thigh muscle as the replacement. To be continued....
Sounds like you've really gone that extra mile to try to bring what you've learned here to your urologist. I can understand that he'd be wary of a site without the backing of a doctor, but in a way the site has benefited from that. People here were big VED proponents for instance years before any reliable studies came out. During that time anyone mentioning the VED to a urologist would get laughed out of the building. Things do get a bit crazy in the alternative treatments area, but on the whole I think the forum works great. Good luck with your treatment regimen!
pvpey,
Looks like you're doing everything you can. Pentox was helpful for me and I was only on it for 8 months. Pain went away in a matter of weeks. Might be worth a try but check with Uro to see if it would interact with anything else you are taking.
On a side note:
Quote from: pvpey on June 04, 2011, 04:27:13 AM
I'm not that large sporting 6 1/2" now as it is.
We've got to stop beating ourselves up over penis size, especially when there is nothing to be upset about. 6 1/2 is on the high end of the spectrum, by the way. If you are between 4 and 6 inches you are completely normal and the same size as an overwhelming proportion of humanity.
/end rant
-Skjald
On a side note regarding the Verapamil gel. I do not get mine from PDlabs, but a Compounding Pharmacy in San Diego. The price is extremely reasonable in comparison to what I've read here and seen offered on the net. A 2 month supply is only $130. I'm screwed and in order to get it credited from my insurance deductible and eventually partially paid for, I have to purchase 1 month supplies for $89. I know, it makes no sense in the world, but how it currently works. I need to contact Anthem/Blue Cross regarding this.
Also, the urology pharmacists there are very helpful. I wanted to make sure I was getting the Verapamil/Hydro compound (PDLabs formula) and not simply only straight Verapamil. Although you know my opinion, the VH supposedly has shown more promise with topical Verapamil only nada. It's not going to break me financially so I'll go with the flow and hope for the best for the time being. My problem is the Cialis. My regular physician will give me samples now and then, but those are 20mg. My insurance will only cover eight 5mg pills every month. My local pharmacist, who just happens to be a very hot woman (talk about embarrassing) suggested that I have my Uro contact my insurance and see if he can get them to authorize more payment. I intend to.
And to get the Cialis and VED my Uro had to diagnose me with ED not related to Peyronies. I have never had ED issues previously, but certainly do now because of Peyronies. It's all like one big "catch 22".
Pvpey,
You can buy generic Cialis on line, I think I paid $130 for 60 20mg pills. They ship from India I believe but works just fine.
Jayhawk
Thanks Jayhawk. PM me some info if you have any. Guess I'll call uro and explain the higher dosage, 10mg as I'll cut them in half. That was his original dosage anyways, but at the last minute he cut it down to 5mg. I have enough for 16 days right now, but am still waiting to hear from VED Distributor. If no contact by Monday evening I will call my uro and insist he fill out RX form "Old Man" directed me to.
On a side note, I posted earlier in another thread that at my urologist's office nurses and not the Doctor administered VI shots. That's what I was told when I called his office. Well that's not the case with my uro afterall, HE administers all such injections and the operator was misinformed. Which is a bit more comforting if it comes down to having them.
Just sent you a PM with the link that I order my Cialis from.
Muchas Gracias!!!
Pvpey,
I used I used tabsmarket.com
Jayhawk
Although Pentox is a "blood thinner", it is not that quality, to the best of my understanding , that makes it an effective drug. Instead, it is the anti-TNF and perhaps antiTGF-beta activity that makes it useful. You might want to discuss this further with your urologist. It may be that a blood thinner (anticoagulant) like Coumadin makes using Pentox off-limits for you. But it might also be that a different medicine could be used, or even that you could use the Pentox for it's anticoagulant effects that makes it a drug you could use.
Tim
I might add that there is a newer, better drug that is now replacing coumadin. While far more expensive (of course), it is also safer and far easier to manage and sync with other drugs and has fewer side effects. I would also add that the other top oral treatment for older guys with Peyronie's is Ubiquinol AND Ubiquinol is very helpful for the heart as well and might very well be helpful longterm in dealing with afib. But be sure to discuss it with your cardiologist before taking it. - George
http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm230241.htm (http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm230241.htm)
http://www.medicalnewstoday.com/releases/100405.php (http://www.medicalnewstoday.com/releases/100405.php)
I realize there are different qualities with Pentox and Coumadin beside both having a blood thinning effect. I need to consult my Cardiologist first before making any decision. The ideal being he will fill that Pentox is an acceptable substitute for Coumadin in my case. However I doubt it from the previous brief conversations we've had regarding it, but who knows. My urologist seems to think that the blood thinning effect of Coumadin will aid in allowing more blood flow in my penis and around existing scar tissue.
I think that your urologist is engaging in wishful thinking. It is not clear that blood thinning improves blood flow to anything, and if it does, that such would help the penis afflicted with Peyronies (two jumps in logic IMHO).
The bottom line is that Pentox is not an anticoagulant with the effects of coumadin - not even close. And Coumadin is not known to have any effect on Peyronies (and the effect of pentox is not related to blood flow). So coming up with a solution that really meets your anti-coagulation needs, and which also allows you to take pentox is the best solution. I think the interactions between pentox and coumadin are perhaps unknown and easily exaggerated too.
Tim
It is certainly a HUGE problem that the term "blood thinner" is so widely used and it applies indeed to drugs that are not even close in their therapeutic effects OR potential side effects. The term "blood thinner" really only tells you that the designated drug/supplement *can* cause a bleeding problem. It tells you NOTHING about its efficacy or even potential efficacy for a specific application. I am always puzzled at how diverse blood thinners forever are being tossed into the same bag as if they were pharmaceutical analogs. - George
Well according to Medline+, I would have to assume that Pentox falls into the blood thinner category
Why is this medication prescribed?
Pentoxifylline is used to improve blood flow in patients with circulation problems to reduce aching, cramping, and tiredness in the hands and feet. It works by decreasing the thickness (viscosity) of blood. This change allows your blood to flow more easily, especially in the small blood vessels of the hands and feet.
And according to WebMD Coumadin falls into the blood thinner and anticoagulate category
Warfarin and Other Blood Thinners for Heart Disease
Warfarin, which goes by the brand name Coumadin, is an anticoagulant medication. This means that it helps prevent clots from forming in the blood. Blood thinners are used to treat some types of heart disease.
As previously noted I think it best to consult my Cardiologist regarding possible Pentox use. From what I've read elsewhere taking both Coumadin and Pentox together can have severe side effects. I don't think that either my urologist or Cardiologist is very familiar with Pentox and both may have to do some research. However the use of Pentox for Peyronies still seems to be somewhat experimental with no concrete evidence of helping or not. But I'm willing to try anything as long as it doesn't kill me or worsen the condition.
Quote from: pvpey on June 08, 2011, 01:08:09 AM
However the use of Pentox for Peyronies still seems to be somewhat experimental with no concrete evidence of helping or not. But I'm willing to try anything as long as it doesn't kill me or worsen the condition.
There are a couple of studies out there with positive results. Not miraculous, but as part of a regimen it can be valuable. There's nothing much out there to indicate that there is a suitable replacement, and think that you're urologist has got the wrong end of the stick with regard to how pentox is thought to help peyronie's disease. Still, there are of course many different approaches and experiences so whatever your treatment regimen ends up being, be to keep us in the loop. All feedback is valuable.
My urologist is not very familiar with the use of Pentox for Peyronies (he told me so verbatim and I posted this in my initial post). Thus his recommendation to visit his colleague Dr. Gelbard who is apparently very familiar with most of the newer treatments and medications used for Peyronies. I will follow the regimen prescribed until I see Dr. Gelbard and get his opinion. I also have yet to hear back from the suggested VED territory representative and intend to contact my urologist tomorrow to get an alternative RX.
My urologist wanted to try Verapamil injections and has supposedly had some recent success using this treatment (as previously posted). I want to exhaust a few other avenues before getting VI shots myself being that they do not seem to benefit everyone, but have been a very effective treatment for others.
Pentox and Coumadin are two VERY DIFFERENT drugs. Both both have a SAME common side effect which is bleeding risk. That is all the term "blood thinner" means ... "bleeding risk". Pentox improves circulation. That IS NOT because it is a blood thinner. It is because Pentox actually changes the quality of the blood cells so they can squeeze through a smaller passage. Coumadin, on the other hand, unlike Pentox, does not change the overall viscosity of the blood in any way. It simply prevents the blood from clotting by attacking the clotting factor Vitamin K. But the effect in both case is the same. You can bleed to death more easily from Pentox because more blood can fit through the hole. You can bleed to death more easily from coumadin because the blood can fail to clot normally when you have a hole. I am not addressing this to you directly pvpey, but some guys on this forum are making wrong treatment decisions because they cannot grasp what the term "blood thinner" denotes and they are putting all "blood thinners" in the same basket when it comes to treatment decisions. As for you, the more expert opinions you get, the better. So it is good that you are bouncing all of this off of your cardiologist and Dr Gelbard. They are the ones who can most of all help you and protect you. You ARE on the right track here, stay the course. - George
Quote from: pvpey on June 08, 2011, 01:08:09 AM
Well according to Medline+, I would have to assume that Pentox falls into the blood thinner category
Why is this medication prescribed?
Pentoxifylline is used to improve blood flow in patients with circulation problems to reduce aching, cramping, and tiredness in the hands and feet. It works by decreasing the thickness (viscosity) of blood. This change allows your blood to flow more easily, especially in the small blood vessels of the hands and feet.
And according to WebMD Coumadin falls into the blood thinner and anticoagulate category
Warfarin and Other Blood Thinners for Heart Disease
Warfarin, which goes by the brand name Coumadin, is an anticoagulant medication. This means that it helps prevent clots from forming in the blood. Blood thinners are used to treat some types of heart disease.
As previously noted I think it best to consult my Cardiologist regarding possible Pentox use. From what I've read elsewhere taking both Coumadin and Pentox together can have severe side effects. I don't think that either my urologist or Cardiologist is very familiar with Pentox and both may have to do some research. However the use of Pentox for Peyronies still seems to be somewhat experimental with no concrete evidence of helping or not. But I'm willing to try anything as long as it doesn't kill me or worsen the condition.
Should I be concerned about using Pentox and a VED unit together? The VED unit lists blood thinners as not to be used in conjunction.
I think the consensus around here is that you should be *aware* rather than concerned. If you pump hard enough to redden yourself, you are probably pumping to hard. Pentox is not nearly as much of a problem as coumadin. In fact nothing really compares to coumadin when it comes to blood thinner risk. You see sometimes old people with purple skin ... thats usually a result of coumadin. Pentox doesn't have these issues, neither things like aspirin or fish oil. So just use common sense and I think you will be fine. - George
Quote from: Worried Guy on June 09, 2011, 12:35:35 PM
Should I be concerned about using Pentox and a VED unit together? The VED unit lists blood thinners as not to be used in conjunction.
You want to check for tiny red dots if your using a blood thinner and the VED, if you see this, quit pumping. I would just take pentox for awhile, give it some time to work and soften your tissues if it is going to. Take pentox for nine months, then pump for 90 days, then I would go back on pentox again. I'm working on my own treatment plan. I definitely think from my own results 6 months is the minimum you want to take pentox for.
Comebackid
Much has happened. Still waiting to hear complete answer from Cardiologist regarding VED usage coupled with Coumadin (Timm Med Rep expressed concerns while administering use instructions, although instructional use showed no problem and worked great, almost too good). Pentox seems out of the question for me.
Although detailed letter written to Cardiologist labled "confidential & private", a nurse calls me back with letter in hand basically telling me that Pentox cannot be substituted for Coumadin in my case, but has no clue as to use of both simultaneously (from what I understand a no-no) Also no mention of VED usage and possible hemorrhaging in penis. To be resubmitted to Doctor or perhaps a one on one talk to be held. I'm still waiting for call.
Anthem Blue Cross denied coverage of Cialis as not necessary in dosage prescribed (read new thread), but approved 8 tablets per month. Had those changed to from 5mg to 10mg as I am supposed to take 5mg daily and by cutting in half, and begging primary Doc for samples, with any luck I won't have to buy many offshore fill-ins.
Insurance still hasn't covered any of the 15% Verapamil gel, but I gotta say one thing, that being since I personally spoke with the compounding pharmacy and only apply it to the effected areas, in my mind it has shown a difference. My curvature seems less, but then again that also could be attributed to recent great oral sex with new GF.
And life goes on.
Hi everyone,
I have had peyronie's about 11 month's now. I am 23 years old (22 on incident).
-It started with slight pain in the shaft for about the first 8 and has started curving slightly during the last 3, -pain is still present
-I went to a uro about 6 months ago who told to me wait and if I see curvature come back/start taking vitamin E
Treatment Plan (daily):
Yasoo Vitamin E 400mg (2x)
Fish Oil 1200mg (2x)
L-Arginine - 1000mg (3x)
Acetyl L Carnitine
CoQ10
Vitamin D3+VitaminK
Soma Correct VED
I am going to go back to my uro to ask about vepramil and pentox, but is there anything else I am missing??
hello...my story:
i developed peyronies about 3 or 4 years ago. it started with a slight pain on the side of my penis getting an erection. that went on for about a year until i noticed a lump . i went to a urologist and he suggested it was peyronies disease...had never heard of it before, i was concerned about cancer. my penis was not deformed at this point but shortly after it started to bend at the top just under the glans...over a few months it progressed and my penis became much shorter, severely curved towards my body and contracted at the base...it was gross. also painful. i couldn't look at it. after some time i was able to masturbate again and slowly i got used to it being so deformed. i would not consider having anyone look at it, let alone consider having sex with someone. i never had a problem getting an erection.
a few months ago i started taking DHEA...25mg every other day. i would also make myself have very prolonged erections before ejaculating...massaging my penis and taking a long time to come. i began to notice over the past few months that my penis was not as severely deformed and slowly it has returned to about 90% of it's previous size. it is again nearly straight and the the contraction at the base has almost gone completely. also the original lump (about the size of a lima bean) has gone.
i do not know if the DHEA is responsible for this reversal of my situation...i only know that the timing is related and i will continue to take the DHEA.
i feel very happy about my penis being normal looking again.
Much maligned DHEA can really do wonders for people IF their DHEA is low. The problem is that it can also make things worse IF their DHEA is normal. So, while it is obviously helping you, a good idea with DHEA is to get tested and find out what your blood levels are. A lot of guys are REALLY deficient and the right amount of supplemental DHEA could likely do wonders for them. - George
i have not been diagnosed with this disease cuz like many others wont go to a doc but abt 8 mo ago when having sex i noticed my penis being xtra hard during sex with a small pain abt as much as gripping hard on ur penis more of a turn on than pain abt 3-4 mo ago i was lying in bed waiting on my wife to get out of the shower n got erect so i stroked it a few times n noticed the girth in the middle of shaft was gone was weirded out didnt say anything to the wife all was good no problem with erection but as the last 3 mo the girth has not come back it seems shorter n now is flexible below the head when inserted im ashamed,depressed,worried n just plain mad will it get worse? will testosterone treatments help? my penis has no lumps its like someone put a rubberband around the shaft. abt a year ago a friend gave me a few cialis to try all it did was gave me a severe sinus headache with no performance enhancements tried another a week later the same i am 38 havnt had morning wood for abt 6 yr have been very sexually active up to this point is this jst age catching up to me or the end of sex? HELP
CR
No it is not the end of sex.
First you need a complete urological work up by a Male Sexual Function Specialist. A general practice urologist does not have the skills you need. There are only 3 or 4 great doctors. You most likely will have to travel to see one.
You need to be on a daily VED therapy for your penile health. They are posted in the VED thread. Any questions on the VED let me or Old Man know.
Testosterone replacement therapy (TRT) is helpful in lots of ways if your levels are low. It will not help peyronies. Your regular doctor can have your blood levels checked. You want at least your Total T and Free T checked. The Free T is the most important and needs to be at or above 60% of your lab range.
You are not alone. This a great place for support.
Jackp
http://jackp-penileimplant.blogspot.com/
bump
Looks good enough, but the big missing element, of course, is Pentoxifylline. - George
Quote from: stx5m on June 26, 2011, 03:08:34 AM
Hi everyone,
I have had peyronie's about 11 month's now. I am 23 years old (22 on incident).
-It started with slight pain in the shaft for about the first 8 and has started curving slightly during the last 3, -pain is still present
-I went to a uro about 6 months ago who told to me wait and if I see curvature come back/start taking vitamin E
Treatment Plan (daily):
Yasoo Vitamin E 400mg (2x)
Fish Oil 1200mg (2x)
L-Arginine - 1000mg (3x)
Acetyl L Carnitine
CoQ10
Vitamin D3+VitaminK
Soma Correct VED
I am going to go back to my uro to ask about vepramil and pentox, but is there anything else I am missing??
I can only agree with Jack. Only a Peyronie's specialist can deal effectively with Peyronie's. Most general urologists (with a few exceptions) are useless when it comes to treating Peyronie's. The breakthroughs on Peyronie's treatments are relatively new and only doctors abreast of latest treatments are aware of them. That would be urologists specializing in Peyronie's or sexual medicine doctors who take Peyronie's seriously. - George
I agree with George. It may be that you're having trouble getting a pentox prescription? I would advise you to go the pentox route if at all possible.
I have noticed lately people feeling negative about pentox.Thinking after three months or a week they should notice positive results.I have been taking this for over a year now and it takes time! Really your junk has been in a traffic accident and your dent pullers are what they are.Pills, ved what ever is your choice for therapy.
I have seen good changes through the course of my treatment.I have seen deformity change even move from an existing point to several centimeters away.Nothing I have chosen as a treatment has caused further damage.Over all I feel pentox has made my condition better.
Fubar
I agree with fubar, pentox does help but it takes a very long time. I'm on 400 mg three times per day for about 6 months and my plaques have diminished somewhat ( they're more difficult to locate them now by feel when flaccid), and are softer. My glans is starting to be more full and engorged with erection, but still not at the Pre-Peyronies state. I'm cautiously optimistic. Some of that could be the higher quality erections given by the low dose daily Cialis.
I go today for my 3rd visit to my current urologist who specializes in this disease. I found him after two previous Uros. The first Uro misdiagnosed me as a fractured penis and said to just abstain from sex for two weeks, no treatment given. (found out later that fractured penus is a surgical emergency and not the same thing). The second Uro I went to had graduated from the Mayo Clinic so I thought he'd before knowledgeable. He recognized it as Peyronies, and said vitamin C and we can watch how it progresses. He had never heard of using Pentox.
My point is stay connected to a Peyronies specialist because that person will be current on the latest drugs and therapies first.
Quote from: restore on July 26, 2011, 09:46:27 AM
I agree with fubar, pentox does help but it takes a very long time. I'm on 400 mg three times per day for about 6 months and my plaques have diminished somewhat ( they're more difficult to locate them now by feel when flaccid), and are softer. My glans is starting to be more full and engorged with erection, but still not at the Pre-Peyronies state. I'm cautiously optimistic. Some of that could be the higher quality erections given by the low dose daily Cialis.
I go today for my 3rd visit to my current urologist who specializes in this disease. I found him after two previous Uros. The first Uro misdiagnosed me as a fractured penis and said to just abstain from sex for two weeks, no treatment given. (found out later that fractured penus is a surgical emergency and not the same thing). The second Uro I went to had graduated from the Mayo Clinic so I thought he'd before knowledgeable. He recognized it as Peyronies, and said vitamin C and we can watch how it progresses. He had never heard of using Pentox.
My point is stay connected to a Peyronies specialist because that person will be current on the latest drugs and therapies first.
Good News! My urologist was very impressed with how I've improved. I had been noticing less curvature, fuller erections and difficulty locating by feel any of my plaques while flaccid, but was cautiously hesitant to accept it. He examined me and stated the plaques were barely palpable, and he looked at pics in the erect state and compared to where I was. I'm straighter, fuller and noticeably better quality erections. I still have some shortening of length though.
He was very optimistic that we should continue with the pentox and cialis and watch for more resolution. I mentioned how I read that several are now taking 800mg and he said he was not aware that Dr. Lue was doing that now. He wants to wait and check that out first before he ups my dosage.
I was diagnosed 5 months ago, and have scarring on both sides about 1/3 the way up. I would say the scarring runs about an inch long lengthwise at this point and is pretty equal on both sides. It was worse on the left, but then the right side got worse, and now it is relatively equal scarring. Right now I have a couple millimeters hourglassing on both sides for about an inch lengthwise, and the downside is that it compromises the structural integrity of an erection. Right now I am on Pentox for treatment.
I appreciate any insight from others who have hourglassing....what their treatment is/was, and did you see improvement over time?....any insight at all around this type of condition is greatly appreciated! Thanks.
I'm in the same boat as you, roughly 5 months in. I've been abstaining from sex and hoping this will resolve. Like you things just seem a little softer than they used to.
I am not currently on pentox though I hope to get a Rx soon. Do you think it has helped you at all?
Also curious to hear from anyone else who has this issue.
I have been on Pentox a little over two months and it has not helped yet. But from what I gather on this board, it is a long term effort, so you might not expect results quickly. I am going back to the doctor in late November, so I will update what he says after being on it 3 1/2 months by that time.
However, I see where you are abstaining from sex.....I think the opposite is what you should be doing. Both urologists I have seen, and one is a Peyronies expert (Dr. Culley Carson) both encouraged getting erections and along those lines, having sex. You want to keep the penis stretched and used.
Instinct is to abstain, but the reality is opposite....I was advised to get an erection every two days to stretch the penis.
I was doing that for a while but I think it has done more harm than good. I still have discomfort when I get an erection so I'm still abstaining.
For others reading this, if you have any discomfort don't get an erection or have sex. That's my advice.
Stay on pentox!
Fubar
I had a diabolical case of hourglassing, and I've detailed my journey under the Verapamil topic (Main Menu).
Was on Pentox for about 6 months with little/no improvement. My doctor then started me on VI and that was the ticket. I had 4 scars and 2 are completely gone. The other two are about 80% gone. VI isn't for everybody, but I'm one of the lucky ones I suppose. VI's have really worked for me.
Regarding sex: yes my doctor recommends it too, but with a caveat. Keep it light, the rough stuff may stimulate more scar tissue to develop. But overall getting an erection is a good thing.
Thanks Ek....I have been on Pentox for almost 3 months....I expect my doc will go a little longer than maybe look at VI injections....great to hear it's worked well for you. Also, I agree, good to keep having sex, but be careful.
It makes some sense to me to abstain from sex if you are in pain--and especially if it sex seems to aggravate or worsen the inflammation. But I can't imagine it would be good to avoid getting erections. That seems like just part of the body's way of staying healthy. Not that you can always choose either. Does getting an erection seem to increase the inflammation?
Yeah, I can almost feel a tearing sensation when I get a particularily strong erection. As soon as that happens I'm like NOPE NOPE NOPE and try and walk it off.
Likewise when I wake up at night with morning wood. Very uncomfortable and I basically have to picture unsexy thoughts.
Hi all, sorry to make another "do I have peyronies disease" post, but I'm not sure where else to go at this point. To summarize at the beginning, a urologist is confused about what's going on and just suggested that maybe it's Peyronie's. I'll try and post as many of the details as I can:
I'm 25 and married for a few years, otherwise perfectly healthy, in fairly good shape (6"3 190lbs). About four/five months ago after returning from vacation, I started having pain specifically at the tip of my penis. It was almost like a burning with redness around the head (specifically near the opening) which would get worse during an erection. It would hang around for days and sex was very painful so my wife and I refrained. Also, after sex, my penis would feel sore for a day or two afterwards despite not really doing anything serious. I immediately went to the doctor, she did tons of tests for STDs (even though there was really no chance of that), did a prostate check, blood sample, the works. Initially we thought that maybe because my wife had Ecoli and a UTI while we were away that maybe I had picked something up from here. She put me on antibiotics for a few weeks, which really didn't help. All the tests came back negative, everything was fine.
She sent me to a urologist, who pretty much checked me out for two minutes and gave me a steroid cream for the irritation. When that did nothing, I went back and he threw up his hands having no idea. I quickly found another urologist with (seemingly) better credentials. He checked me out again and said he didn't feel anything abnormal, but put me on two weeks of Vibramycin antibiotic. After a week, I was thinking this was getting better, but a few days after I was through with the medication the pain/burning seemed to come back. (BTW, this pain starts the moment I'm fully erect before any interaction at all). Went back to the dr the second time, he though that maybe it was just a stubborn infection, gave me two weeks of antibiotics again to be taken with a bunch of ibuprofen. Again, I thought maybe it was getting a bit better, but really it never went away. This last time, he checked me out again, suggested that perhaps it's peyronie's, asked if I have a bend in my penis, and told me to take more ibuprofen w/o the antibiotic (2 capsules 3x a day for a week) and to let him know what happens.
So. After spending the last 48 hours reading about/freaking out about Peyronie's and wondering if this what's happening, I'm a little lost. There is a slight bend in my penis to the right, but I'm not convinced that this is new- it's noticeable but not very dramatic, and I'm fairly sure it didn't just happen. I did mention to the Dr that I felt a tiny lump or something like that which felt like it was tender, but to me it feels more like a vein or something that hardened a little or ruptured. Neither urologists felt it. Also, in reading all this material about Peyronie's, I'm not seeing anything at all about a burning sensation near the tip of the penis or redness. Also, I don't really have any pain in the shaft of my penis during an erection, it's almost totally inside/around the head, though as mentioned about sometimes after intercourse I've felt sore.
A few other little notes:
I haven't had any discharge or anything like that
I lost about 25 lbs earlier this year from diet and lots of exercise, that's about the only body change I've had in the last year.
I just don't see how my symptoms are related to Peyrone's, but I'd really appreciate any suggestions/comments from the folks here. Thanks.
Henry
Sounds like you need to go to one of the great Male Sexual Function Specialist.
I am no expert but it sounds like you may have a nerve pain. Nerve pain is usually treated with neurontin. You will have to get your doctor to write you a prescription for it.
Jackp
http://jackp-penileimplant.blogspot.com/
Deep breath.
If you are freaking out about it being Peyronie's you should try and find a urologist who specializes in it. Can you post your location, someone here may be able to let you know if there's someone nearby who you should talk with. Since it's not a common problem, especially in younger men, you really want to see someone who has expertise so they can give you a definite yes or no.
If you have pain of any kind during erections I highly suggest that you refrain from sex or getting erections. You may or may not have Peyronies but pain is your bodies way of saying 'something is wrong'. Maybe you have some minor tearing inside your head. If you agitate this over a period that's probably not good for your body and could lead to more serious issues. I speak from personal experience - I kept wanting to check to see if the pain was still there (before my condition got to where it is today) and I'm pretty sure I did more damage than I needed to. Not worth risking your next 30 years over a month's worth of abstinence. IMHO Pain == bad.
From what you've posted it does not sound like Peyronies to me, but I'm not expert by any means. There are people on this forum who know much more than I do, and then of course doctors.
Have you had an ultrasound done?
Both of these guys are giving good input and listen to them.From what i read earlier today from your post it did not scream peyronies.To me it sounded more like rough sex or a mild infection.
Through out my life i have experienced burning or tinging pain in the head of my penis.Believe me you will know peyronie's if you have it.So relax have a good nights sleep. If you have no visual deformation and all i .the way it was yesterday no worries brother.
Fubar
Thanks everyone for your comments, I do feel a bit better. I've mostly been concerned considering this irritation has stuck around for so long and resisted all those antibiotics that maybe this was the last option. I live in virginia, so perhaps if this sticks around longer and I'm not getting any new suggestions from this second urologist I'll seek out someone who knows more about Peyronie's just in case.
Thanks again.
Just a word of advice - we are not doctors. It may very well be Peyronies. You need to see a urologist who really knows about the disease to give you a confirmed yes or no. Feel free to use this board to find someone as there are quite a geographically diverse set of people who can likely point you in the right direction.
Best of luck!
Hey guys.
Im now 23 and have had Peyronies Disease for 3 yrs. its been in the same phase for a while. have 3 different scar tissues on the left side. been to the best urologist my city offers and pretty mch he gave me verapamil about 1 and a half yrs ago. ofcourse it didnt help and thats all he suggested. takes me 6 months to see him for 10 minutes and the doctors dont really care. now im a virgin other than oral sex. have tried to have sex with 10-12 different partners over the course of my peyronies and have failed and just caused embarrassment for myself. lost the girl i fell in love with about a yr ago. she tried to cope with my problem but pretty much one day she had enough of me not being able to have sex and she left me and havnt talked to her since. i have a really good career job and have a year left to get my degree with a 3.7 gpa. have resorted to smoking weed and now selling it because i dont give a crap anymore. i suffer from depression as well and for the last 6-12 months until abut 2 months ago i contemplated suicide every other day but couldnt do it. no one knows other than my best friend that i finally had the balls to tell a month ago and our friendship is slowly vanishing. all i do now on my spare time is lock myself in my room because i hate everything about my life. i lost all motivation in life and am wanting to drop out of university because i really dont care anymore and dont want to try. i just really dont see a point in things anymore. im honestly a really good looking guy with a nice and upbeat personality that i have come to hate because all it does is get girls wanting me all the time when i try to avoid them. ive had to decline many sex invites from females and all my other friends are always wondering now why im avoiding girls and not getting laid . i dont know what to do anymore in life. where to go from here. im obviously never gonna be able to have sex. never have children and never live truly happy. i lost all hope in religion. used to be a religious person but not anymore after how life f'~c<+d me. all i did was wake up one day and Peyronies Disease appeared out of the blue. since then everything else in my life has fallen slowly. i even told myself after researching and consulting doctors that ill probably slowly fade away which ive done as expected. i tried my best to be happy and in doing so got a good job and good grades. but i dot care anymore. why do rapists and murderers have the right to keep their manhood while me and others that are truly good people have to suffer. and although we suffer we still try to be good people and do the best in life. but still my Peyronies Disease exists and wont show any signs of improving. i cant even look myself in the mirror anymore. and the worst part about having Peyronies Disease is i have a never give up mentality. im always number 1 in everything i do still. this just sucks because im fighting a fight i know i cant win but still will fight it because thats who i am. i dont like to lose. but all men have a breaking point. and i reached mine a year ago and since then i have been in a state of depression. i really dont know what to do anymore. lost contact with my mom and father . fatehr when i was 10 and mother when i was 18. im the blacksheep of the family that had to do everything on my own. im proud of myself for getting to where i am today. but i need my manhood and pride back. my life back.
please someone if u can help let me know! im done
soroxas, You are NOT "done", you are just imagining that you are. At 23, you have a LONG life ahead of you. Just a few years ago, there was little hope for Peyronie's patients. That is not true today even though most docs don't seem to realize that. Just pay attention to how you deal with the rest of your life and stop concentrating on Peyronie's for a while. If you have only tried Verapamil, topical Verapamil at that, you haven't even started with the most promising treatments. But BEFORE you even start other treatments, you need to get a handle on your life and your emotions. You need to be able to have a relationship with a female without associating it first thing with "sex". You need to be able to tell a female that you want to wait for a while before stepping into sex and marriage instead of seemingly being cowed into validating your "manhood". Any woman who truly loves and cares about you as a person will happily accept you as you are. And you need to be willing to do the same with her. In the mean time you have LOTS of time to deal with the Peyronie's issue. ESPECIALLY at your age, you need to be in the care of a major league Peyronie's specialist. I really don't know if there are any in your neck of the woods, but there are some in Toronto. If I were you, I would start on this problem by making a phone call to the top Peyronie's doc in Toronto and ask HIM if he can recommend someone in your area. If not, I would hop on an airplane and connect with one of the docs in the Toronto area. It is usually a matter of seeing them once and they can work out a treatment strategy and get you on that with a local doc in your area who will be happy to go along if the instructions come from a world class expert. And if that doesn't produce results, it will at least most likely keep things from getting worse. And I can all but guarantee you that there are new and much MORE effective treatments in the pipeline that will be available to you within the next five years. So stop wallowing in pity on yourself and pull your life together. The world is NOT a nursery where we are pampered like babies. We all have to grow up and take these challenges in stride. So stop hating God over one of those things that just happens to come along, because that attitude is not helping you to overcome this, it is just making you bitter at life and if you picture yourself as a victim, you will become one. Instead try to imagine all the other things you can do with your life while you are waiting for a short few years to see progress with this issue which will SURELY happen if you allow it to. But you have to be willing to step out and help yourself on this issue. In the meantime, if you haven't already done so, give Bill a call at 416-988-6263. He works at PeyroniesCanada.org in the Toronto area and can likely give you some additional advice and encouragement. He has connections with some of the worlds top Peyronie's doctors who practice in the Toronto area. All the best to you young man, you have a bright future ahead. Don't squander it by wrong decisions now resulting from unnecessary depression. You are not facing terminal cancer or a life threatening chronic illness. What you are facing is something that is VERY treatable. There are a lot of guys around here who have overcome this years ago when there were far fewer options AND who have managed to have happy and fulfilling relationships through it all. So get a life. And I DON'T mean that sarcastically either. Just do it. - George
Soroxas,
I got this at age 29 during which time I entered one of the darkest phases of my life. I know what you are going through. The only way out is up and you have to fight every damn day to make yourself better. Ask one of the urologists you went to for pentox and get on it. If you are having erectile function issues get on daily Cialis as well. Get out there and exercise, quit smoking weed and keep hitting those books. Don't give up. This disease is tremendously awful but in dealing with it you will find strength you didn't know you had. The quality of a man is not defined by what he's got below the belt but rather the courage in his heart and the boldness with which he faces adversity. This is what men do; we fight best when things look hopeless.
By the way, my wife and I conceived our beautiful baby girl while I was on pentox and still in pain from the disease. PM me anytime of you have questions.
-Skjaldborg
What treatment options have you tried so far? Just the Verapamil? Have you spoken about this to anyone close to you other than your best friend - do you have any family that can help? Is there someone you can talk with who can help you get all the info you need and find a good doctor who will work with you to figure this out?
The doctor you're seeing sounds like an a$$hole. Maybe he's well respected but if he's not giving you more than 10 minutes and doing everything he can to help you (physically and mentally) find someone else! Bang down doors, let them know how much this is affecting you and how helpless you feel. Get people to pay attention to how bad this is. Medicine is not a science, it's much more of an art and it's important to find someone who really knows what they are doing and isn't just a walking encyclopedia. A doctor who gives you Verapamil and nothing else isn't doing their best to help you.
As far as letting your life go down the drain - I hear you on that one. I'm currently really bummed out and depressed. Haven't gone to work for almost a month, don't really do much of anything all day, don't really want to talk with anyone. For me I know this is just a temporary thing - I just need to get this out of my system and then like Skjaldborg says pick up and keep fighting. In your case I'd suggest doing what you need to do to come to terms with this and then pick up and start figuring out what you need to do to get on with life. BTW if you are thinking of suicide make sure you talk to someone - a hotline, a friend, anyone. As bad as things seem you can't predict the future - don't give up hope that you will one day be able to figure this out. I suspect it's the lack of hope that this may get better which is getting you donw - and your doctor really doesn't seem to be helping.
If you have a 3.7 GPA have you thought about med school - maybe become a Urologist? :-)
soroxas - get on:
1) pentox
2) ubiquinol
3) VED
start now and you will see an improvement - george 999 is right - i was real depressed - flew around the world to see dr leu in SF - just take the meds and if you have ED get on some cialis - you will get better - pentox is a good thing to start with -
Soroxas
Speaking as a fellow Canuk , please don't despair. You have been extended a great deal of support and good advice from George , and several others regarding treatment options . Once you begin actively treating the condition , your mental attitude will vastly improve. I felt as you do last summer when my Peyronies Disease bend became apparent. By searching and posting here , I began suppliment and VED treatment. I feel good knowing that I am doing something about it.
Now as George recommended , Bill at Peyronies Canada is a great source of information. As a matter of fact I just now spoke with him. In the meantime I would get through to Dr. Lee's office and see what is required to get in there asap.
Pls feel free to send me a PM ( personal message) if there is anything else I may be able to do for you.
Mike67
Hi all, I'm just diaganosed and have 2 lumps (confirmed by ultrasound), pain when erect, a left hand bend and no trauma to explain it and have finally got an appt to see a uro. Problem I have is that the only Peyronies Disease specialist in my state(Perth,Australia) has just retired so i have gone with a uro who i've been told is good and who promises to refer me to someone else if she can't help me. What i want to know from the experienced people here is what i should ask and what i should be expecting from a uro who has at least had some experience with Peyronies Disease. I'm flying blind at the moment but want to be as proactive as i can and intend to research drugs like pentox and viagra as much as i can in the next couple of weeks. I feel at the moment that there is no one available who specialises in this disease in my state( Perth is the most isolated capital city in the world!) and would like to be able to go to the uro armed with as much info as i can get my head around. It's already playing heavily on my mind even though i have a wonderful wife whom i've been with 15yrs i still feel very lost.
Sorry if this not the place to ask this but i'm still a little confused at the layout of this site.
Jut
Welcome to the Forum Jut. I am on my way to my Uro now but can say to you - yes - you have come to the right site.
For starters I suggest you scroll down to about page 6 or 7 from Nov 4 at 10:29 am . A post by George999 is there with a link that starts : available treatments Knol.google.com etc.
That should get you started with some good and pertinent reading material. You can bet there will be lots of posts responding to you soon.
Talk to you later
Mike67
The brief summary is the following:
Most uros will say 'take some advil for a week' and that there isn't much you can do for this. Basically 'let it heal' is the older advice uro's will give.
Until recently the more aggressive treatment was to give injections of Verapamil into the penis - once a month over the course of 6 months. Many members on this forum have bad things to say about this treatment - that it made their condition worse, it bruised their penis, caused impotence in at least one member's case. There are a few people who comment saying that it worked for them. The bad comments scare me more than the good comments comfort me.
The most up to date non-surgical treatment is a drug called Pentox (Trental in Canada and probably Au). It does a few things - opens up capillaries to increase blood flow, has a mild anti-inflammatory effect and also makes your blood more viscous than usual. It is used to treat people with sickle cell anemia and those who have claudification of the arteries. Taken 2 or 3 times daily it has been shown to help stop progression of the disease in about 40% of men. People on this forum seem to have had a lot of success with it, even those who have had issues for quite a while.
Non-medication based treatments are traction devices and vacuum erection devices. Both of these go on the theory that if you stretch the scar tissue (those lumps) it will make them more pliable and thus reduce the curvature. I'm not an expert on these but some people say they have had success. In both cases I would caution to be very careful with them - you don't want to end up doing more damage than you already have.
Finally, as to pain, from my personal experience I found that leaving it alone for 2-3 weeks saw a noticeable improvement in how much pain I was having. I wish I had been a little more careful early on while I was still in pain and let my body heal a bit more. My advice is that if you have pain try and let your body rest and not have sex until you can either feel it getting better or the pain really doesn't go away. I also would recommend getting on Pentox as the comments from many members are very encouraging and it has clinical trials to back up the fact that it can help quite a bit.
The final treatment is surgery, which many people have undergone and has good success rates. This is only an option after quite a bit of time has passed (12-18 months) as it takes a while for this to stabilize.
JUT - try to see Dr Malouf at St George Hospital in Sydney - hes the best and its worth the trip - he will get you on the pentox - if its too far just do what we all do and get on the pentox OR what we call in Au Trental - thats the best advice...but perhaps a visit to malouf is a good call - after all I flew all the way to see Dr Lue in san fran and all i got was pentox:)
Thankyou all for the advice especially iceman pentox=trental in aust. Have ordered levines book off amazon (would appear i can't get it where i am locally) and will start reading as soon as i get it. Any one else who's reading this post and has some advice please post!! I intend to update my progress to add to this excellent forum, blokes helping blokes who would have thought AWESOME!
Cheers Jut
A little late to this thread...but I only just joined!
My hourglassing is about 2.5 inches from the tip (just below the circumcision scar).
Quotetearing sensation when I get a particularily strong erection
That's a pretty good description, I'd say.
Having just noticed the deformity (last month or so) and started the research (and finding this place) I am trying figure out how best to deal with "sex".
Haven't abstained yet...but the last time I have to admit I was "distracted" by the possibility of "overload".
Quoteit compromises the structural integrity of an erection.
I'm a Structural Engineer....so I know all to well the possibilities. ::)
Making an appointment tomorrow to see a uro.....
Hi,
I read your post. Almost the same situation here. I'm 57, Gay, partnered about 14 years now. Besides sex with my partner I also Masturbate. I noticed my extra bend a few weeks ago. I talked to my doctor about it at a recent follow up. He concured with my self diagnosis. I had read that vitamin E may have some affect on reducing the scar tissue that has develeped that causes the bend. Although he added there is no evidence that it helps. In a lot of cases this problem clears on its own but may take several months to a year. My new bend isn't hindering performance either. I have always had some curve. But this was very noticable to me. My partner didn't notice until I brought it to his attention.
If you'd like to chat drop me an Email.
Best
John
bent_2011,
Hi, I agree with you that the penile injury causation theory does not make sense in all cases, certainly not mine since I have not had sex of any kind for over a decade other than nocturnal erections, which are involuntary. My urologist's response was that I probably rolled on an erection in my sleep and injured myself. Whatever. I sleep on my back, but anything is possible. More likely it is caused by a combination(s) of things, and oxidative stress is involved in some way that results in a systemic disorder.
In a number of cases, it is probably iatrogenic (doctor caused), in particular meta-analysis is condemning of the beta-blocker class of drugs like Metoprolol for high blood pressure. Is there a cover up going on? I dunno, and its too late in my case, the damage is done. The cause(s) will likely never be known, or be uncovered by fluke someday. But you need to get on the problem now to keep it from getting worse. Only about 10-15% of cases resolve on their own. To give you my top five proactions:
1) Get all excess hair off your shaft and scrotum so you can check yourself out and in preparation for VED. You do not mention pain, but you should note any painful areas during your inspection.
2) Get an erection and take digital photos of yourself that indicate the curvature and deformations. You can use a cell phone or digital camera. Your urologist will want to review these with you, and they will provide a baseline for future comparisons to see how treatments are going.
3) If you have any excess weight on your body, start now getting rid of it. In some cases, metabolic disorders may play a part in Peyronies Disease. Watch out especially for any accumulations of fat around the base of your penis. If you drink, you may need to reduce alcoholic intake because it will create estrogens. Work on core fitness exercises. Cleaning up fat deposits from the base of your penis will also help with the VED therapy/skin pinching.
4) Whatever you decide to do, think and consider carefully and do not harm yourself or throw your money away on unproven methods. Desperation can do weird things to people, and a failed regimen that leaves you worse than you started is a bad result.
5) Peyronies Disease is sort of an orphan child hiding out in the back woods of of the medical orthodoxy. We dart out of the shadows to collect a few scraps, then fade back into the shadows of obscurity until the next under-powered research project shows up. There is little research going on and many MD's do not respect patients or listen to them. Too many are insensitive to the grief endured by patients. If that happens to you - call them on it and demand respect. Good luck!
George
You have stated at December 4, 2010
QuoteI have just experienced surprising and exciting results from Ubiquinol in combination with Pentoxifylline. I just ordered PQQ the other day and am looking forward to adding it to the mix. I think we are really (finally) on to a potential cure for this crap at this point and I can't see how PQQ would do anything but add to the obvious effectiveness of Ubiquinol/Pentox. - George
You have some update in the subject?
James
While I continue to view PQQ as "interesting", but I only ever took a few weeks of it and did not notice anything dramatic. That is why I never followed up on it here. I really tend to gravitate toward those things that are exceptionally effective which means Pentox and CoQ10, and now, of course, radical reduction in blood sugar levels, which is paying off big time in terms of reducing inflammation at every level. Now that my blood sugar levels are way down for some weeks now, I am able to take supplements again that I had to stop taking because of Peripheral Neuropathy. These supplements made my legs burn with pain, but now that my blood sugar levels are way down, I can take them without any pain resulting. For me that is hugely important because it means that I can take a blood pressure formulation again that was very effective in getting my blood pressure down. - George
I have tried Life Extention's PQQ for about 2.5 months. I took 10mg a day which is the recommended does.
I can't say I noticed anything. It is a bit expensive. I would not discourage anyone from trying it. I have read if you take more aggressive dosings it may give you some intestinal disruptions. As George stated I also am putting my resources towords Ubiquinol and ALC. They all support the mitochondria.
George and Goodluck
Thank you both for the update.
James
I am mostly gay I suppose even though I am married and have 4 children. The attraction never goes away for men though. I have had peyronies since age 19 and I bend to the right. I shrank from 7in down to 6.5. You have plenty still at 7 to use. I used to have rigid erections so the curve was pronounced but not bad enough to stop me from haveing sex with my wife. I was a virgin on my wedding night with women anyway. I met one gay man whose dick was completly taken over by peyronies. Only his glands would swell when he was erect. The rest was just twisted and hard.
I was divorced twice from the same woman and we are married again. I was a gay man in between. It seems hard for gay men to have ongoing sexual attraction for each other. Women as difficult as they can be somehow make this better. Men persue and women surrender. Until age 50+ now my wife chases me but I like to get caught. My erections are slow in comming but still work.
I take a pill Clomid to increase my testosterine levels. It is much better than the gel testosterone. The hormone causes your balls to shrink. Clomid tricks the brain to tell the testicles to produce testosterone naturally. My balls are back to normal size, and my hormone level was actually a little high last blood test.
soroxas
I see you are still active on the forum. Have you done some treatment from your last post at October,31, 2011?
You had some results from the treatments?
James
My treatment update and results, June 08, 2012
October 10, 2011- VED – single cylinder, not medical grade, 30 minutes daily. Lost 2&1/2" to Peyronies.
November 11, 2011 – 12.5mg Viagra added daily; gain back ½" in one month (actual penis length 13cm).
January 19, 2012 – 2*400mg Pentox daily added gradually
February 27, 2012 – the daily Viagra dosage increase to 16.7mg
April 20, 2012 – Changed the daily Viagra to 4mg daily Cialis.
June 8, 2012 – Length 13 cm
Next week will add L – Arginine 1000mg daily
Ubiquinol 2*100mg daily
Results until now:
In addition to the ½" length gain,
Flaccid state increased in girth and length, out from my abdomen when hided gradually after the Peyronies onset.
The nocturnal and morning erections are back.
No change yet in the libido that is very low even my testosterone is 497, much over the maximum expected for my age (64+)
James
I met one gay man whose dick was completly taken over by peyronies. Only his glands would swell when he was erect.
Well guy, It has been nearly a year since you joined Peyronies Forum. I got my right curve back when I was 19. I know how you feel. I have had scar tissue develop in the middle of the shaft and then vanish. My right bend of about 30 degrees was rigid when I was young, but as I have gotten older (now 56) the curve is not so rigid but bendable which makes intercourse easier. This will probably happen to you as you mature as well. I was a shy young man and a bit socially awkward but managed to marry at age 26. I showed my bend to my fiancee before we married but did not attempt intercourse until the wedding night. Everything worked out OK with just a little difficulty, and I have 4 children and 7 grandchildren so far. We have had a a couple of bad divorces but children bring us back together. I am guessing your left bend is more severe since you have tried intercourse without any luck. There is always a strap on for her and masturbation for you. You can still have kids with a willing mate. Only sperm needed for this. I met a man once that has a penis smaller than my little finger and he can't get it up either. He has been married twice and probably never was able to penetrate due to his small size. He seemed happy with his new wife. Intercourse alone is never enough for my wife and I am still a premature ejaculation guy. Power tools do wonders. There are many women who could care less about sex. Lots of men find this out once they are married. You just never know.
Sorry Im really new to this forum (about 25 minutes old), it took me that long to find my way around and find reply then find someone online. So I hope to get direction here. How do I find the Womens forum??? Please.
K never mind Im goimg to just read forums for a while ??? :-\ :'( :-[
2bent4me
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James
There are many women who could care less about sex. Lots of men find this out once they are married. You just never know.
[/quote]
I wish I had known this 40 years and a crooked cock ago! I would have interviewed them all.
Regarding interview:
The problem is that you will never know until you will marry. :(
So just an interview 8) or a "close" friendship ;D will not tell you nothing :(
But again, is just my private opinion and experience 8)
James
Quote from: George999 on October 31, 2011, 10:55:27 AM
You are not facing terminal cancer or a life threatening chronic illness. What you are facing is something that is VERY treatable.
George, honestly i didn't understand.
I'm 29 years old and i have peyronies since 2 years ago.
All treatments have been not useful. I haven't any more solution.
My life is a nightmare and i would prefer 100 times a terminal cancer rather this dripping.
I can seem drastic but my life has changed drastically after this disease and i don't see hope anymore.
Of course there will be many people that will have good improvments, but for other many people this disease seem be unsolvable.
Quote from: dioporcolorisolvo on October 23, 2012, 08:13:25 PM
Quote from: George999 on October 31, 2011, 10:55:27 AM
You are not facing terminal cancer or a life threatening chronic illness. What you are facing is something that is VERY treatable.
George, honestly i didn't understand.
I'm 29 years old and i have peyronies since 2 years ago.
All treatments have been not useful. I haven't any more solution.
My life is a nightmare and i would prefer 100 times a terminal cancer rather this dripping.
I can seem drastic but my life has changed drastically after this disease and i don't see hope anymore.
Of course there will be many people that will have good improvments, but for other many people this disease seem be unsolvable.
What is your diet like? One of the exclusion criteria for most all studies on medications is diabetes and insulin resistance. So we have no idea if these drugs will work well on people who have those conditions.
I am 31 and have had this since 28. Have treated it very successfully in my opinion, in the very first year.
Edit. Have read some of your posts. Yep you need to sort out your diet, and 80/20 does not work.
Get an A1c test.
dioporcolorisolvo
I had exactly the same feeling:
Quotebut for other many people this disease seem be unsolvable
I was at this side also and then suddenly one month ago some improvements begin.
I don't know what your treatment is/was and how long time you have done this treatment.
Can you give some details?
Don't lose hope, from time to time have something new in the subject. Maybe Xiaflex will work for you?
James
Quote from: skunkworks on October 23, 2012, 08:48:20 PM
Edit. Have read some of your posts. Yep you need to sort out your diet, and 80/20 does not work.
Get an A1c test.
I didn't understand.
I follow Paleodiet, the best diet for these diseases.
Quote from: james1947 on October 23, 2012, 09:25:54 PM
I don't know what your treatment is/was and how long time you have done this treatment.
Can you give some details?
Don't lose hope, from time to time have something new in the subject. Maybe Xiaflex will work for you?
I made every treatment possible in these 2 years.
Some treatments have worsened condition, as VI and ALSO pentox ( i don't know why...this is a big mistery).
Now i take carnitine and i follow the paleodiet.
I have problems with traction and VED because i have also pelvic chronic pain (another crap disease) and these instruments worsen symptoms.
I am in a cage and i try all solutions but without benefits.
I'm still alive only because in Italy it's hard to raise a gun.
If i lived in USA i was already died.
I don't want depress other members of forum but my situation is this.
I add that you are 65 years old. You are not old but you are not 27 years old....at my age this disease isn't tolerable.
Quote from: dioporcolorisolvo on October 23, 2012, 09:41:26 PM
Quote from: skunkworks on October 23, 2012, 08:48:20 PM
Edit. Have read some of your posts. Yep you need to sort out your diet, and 80/20 does not work.
Get an A1c test.
I didn't understand.
I follow Paleodiet, the best diet for these diseases.
Quote from: dioporcolorisolvo on March 23, 2012, 09:17:31 PMI must say that it's a hard diet, and when i'm very depressed i eat sugar, so i'm not able to follow ever this diet, but is my reference point.
You need to follow it all the time, some of the time is not good enough.
An a1c test will tell whether you have glucose control issues.
Quote from: skunkworks on October 23, 2012, 09:59:31 PM
You need to follow it all the time, some of the time is not good enough.
An a1c test will tell whether you have glucose control issues.
Since 2 months i follow it bolt.
'Bolt' meaning all the time or strict?
And you are currently taking pentox, arginine and cialis? How about coq10?
Do you have a traction device?
Quote from: skunkworks on October 23, 2012, 10:15:06 PM
'Bolt' meaning all the time or strict?
And you are currently taking pentox, arginine and cialis? How about coq10?
Do you have a traction device?
Bolt means all the time, without exeptions.
I took Ubiquinol for 7 months, without benefits.
Same thing for Vit E, Propionil Carnitine, Colchicine, Pentox (this drug has worsened my condition, strange but true), Arginine.
My problem is not erection: my problem is loss of ghirt and deformation and none drug helped me.
I used traction for 1 months one years ago, 7 hours daily, but i stopped it because pain.
As i said before, traction and VED are not very good for my chronic pelvic pain.
dioporcolorisolvo
I agree with your sentence:
QuoteI add that you are 65 years old. You are not old but you are not 27 years old....at my age this disease isn't tolerable.
After your answers to me and to Skunkworks I am out of advices.
I hope George or someone else with more knowledge than mine will have some advice.
What about Acetyl L-Carnitine and CoQ10? In George opinion, those are the best things for Peyronies.
Just one more question:
Your plaques that makes the deformity are palpable? Can see them by ultrasound?
James
My ONLY advice would be to thoroughly investigate your glucose metabolism and to get a thorough investigative exam looking at things like serum nutrient levels etc. If none of the usual treatments is providing relief, that would seem to indicate something seriously wrong on a deeper level, glucose would be the number one suspect. - George
Quote from: George999 on October 23, 2012, 11:01:34 PM
My ONLY advice would be to thoroughly investigate your glucose metabolism and to get a thorough investigative exam looking at things like serum nutrient levels etc. If none of the usual treatments is providing relief, that would seem to indicate something seriously wrong on a deeper level, glucose would be the number one suspect. - George
I think this is a problem for a lot of treatments, and is why the general public does not seem to see the same percentage of relief as the subjects in the study for whichever medication.
This line is attached to pretty much every study done on humans out there:
QuoteBe judged to be in good health, based upon the results of a medical history, physical examination, and laboratory profile.
Diabetes or any kind of glucose control issues would turn up in the lab work and that person would be excluded from the trial.