PEYRONIE'S TREATMENTS - Questions, Plans & Remarks

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BrooksBro

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.

Gomez

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

chiguy

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.

Briden

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

George999

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 and Vitamin D Council 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

Fred22

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 and Vitamin D Council 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

George999

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

related

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

diminishedhope

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
Long time sufferer of penile problems; Recurrent Priapism, nerve damage/numbness, plus 4yrs with Peyronies Disease

GS

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

acetyl

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

Old Man

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

acetyl

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

45acp

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

GS

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  

Old Man


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

Blade

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

Rickmud

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.

Old Man

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

Rickmud

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.

Old Man

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

acetyl

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

Old Man

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

Fred22

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

YMENOW

" 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?

jackp

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

chiguy

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.

George999

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

jayhawk

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  

George999

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

ComeBacKid

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

Fred22

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.

ComeBacKid

Fred,

Staying on vitamin E for long periods at high doses is bad, it can harden your arteries.

Comebackid

jackp

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

Old Man

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

jackp

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

Old Man

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

skunkworks

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.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

George999

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

ComeBacKid

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

George999

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

jackp

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

newguy

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."


Iceman

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!!

newguy

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.
 

Iceman

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

skunkworks

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.
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

Iceman

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...

skunkworks

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 is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

SSmithe

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
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.