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[Liam]

This area is NOT for posts about improvement in pain since that is universal.  Also do NOT post about reduction in plaque size since that is also typical.

This area is ONLY for posts about actual improvement in deformity and function (bend, dent, curve, erection, buckling).  Please be as specific as possible: How long did you have Peyronies Disease when you began to see the improvement?  What actually improved?  How much did it improve? What treatments did you use and when?  What is your gut feeling about the improvement being related to spontaneouse improvement or the result of some treatment?  State whether improvement in functional erections seems permanant, or if it is the result of ongoing use of a prescription or supplement.

[ComeBacKid]

I've had peyronies disease now for 7 years, it was the result of a soccer injury when I was 15.  At first I just had slighlty weaker erections and not much bend at all.  I saw a very slow worsening over time, but most recently a huge loss in size, and a much sharper and distinctive bend of about 35 degrees to the right, with a slight twist from the base.   I really didn't see any improvment until I started taking the pentox about 2 weeks ago.  The improvement has been in straighter and fuller erections, and a fuller flaccid penis, the elasticity seems to have returned somewhat as well.  I was on the trazodone before this and still am, that seemed to help with the erections, but the pentox now has really improved my erections.  It can still be hard to maintain an erection without some kind of constant light stimulation, but the fullness and resolution of the bend has been a ray of light for me.  I'm currently taking 400mg of pentox 3 times daily with food.  I'm also taking L Arginine 1000mg twice daily, trazodone before bed at a 25mg dosage, and doing the VED workout daily.  I was doing everything but pentox for awhile (months) and noticed small improvements, the pentox has seemed to help a lot with blood flow, you can also tell the tissues are more flexible now, and not so hard.  Tim has posted a good piece on exactly what pentox does, I have not yet gotten to read it all.  I wanted to make everyone here aware of my solid improvments from pentox, it costs about $55 per month, but I will continue taking it I think it is worth it. I can't say whether my erection improvment is permanent or not, but as long as I can take pentox I will continue to do so.

ComeBackid

[George999]

My peyronies experience started back in March of 2004.  The first symptoms were lots of pain that extended from the tip of my penis all the way back to the prostate and bladder and was accompanied by an urge to 'go' all the time.  I was first diagnosed as having some sort of urinary tract infection, but then the deformaty began to appear with subsequent errections.  The distal inch of my erect penis became somewhat flatened in such a way that my urethra became very prominent.  Along with that phenomenon, I noticed a very hard, almost metallically hard lesion at the end of my flacid penis under the glans.  I eventually went to a urologist in the late fall of 2004.  He made the peyronies diagnosis and put me on 800ui per day of "all together now" Vitamin E!  The (synthetic) Vitamin E proved fairly useless, and the next thing that happened was that I developed a "band" or constriction at the point where the normal tissue met the abnormal tissue, if you know what I mean.  This created somewhat of a hinge effect at the end of my penis, which led to a new injury which pretty much turned the whole end of my erect penis to shrunken pulp along with causing a lot of pain again.  As that was beginning to heal (in terms of the pain relenting) I happened to get a natural vitamin E to take at work along with the synthetic I was taking at home.  I immediately noted some small degree of benefit.  Sometime during this period (around March of 2005 I began taking aloe vera which seemed to help some with the peyronies)  After months of slow improvement, and lots of research, I took Peyronies Disease Institute up on their challenge and bought some of their full spectrum E.  I don't remember exactly when that was, but it produced a large and noticible improvement in my peyronies.  My experience with the aloe vera and the full spectrum E led me to really get into the natural supplement area and really examine the different legitimate peer reviewed research going on there.  I am now taking a long list of supplements and herbs and the peyronies is getting steadily better with the original plaque hardly detectable any more, and the band completely gone, and the end of my penis more normal than at any time from the beginning of my experience.  There is still room for more improvement, but on the whole, I am extremely satisfied over my gradual and persistant progress.

Things that I have considered beneficial:

Aloe Softgels (2 per day)  (Anti Inflamatory)
Full Spectrum 400IU E from PDI (2 per day) (Anti Oxidant)

Things that I believe might be beneficial and am taking as well:

Neprinol (1 per day) (antifibrotic)
Fish Oil (1 per day) (anti-inflammatory)
Vitamin K2/D combo (1/2 per day) (to counter Vit E blood thinning effect)
Quercetin/Rutin (1 per day)  (to strengthen vascular system)
Vitamin B6 (1/2 per day)
CoQ10 (1 per day) (to benefit vascular system)
Natokinaise (1 per day) (anti-fibrotic)
Time Release Vitamin C (6g per day)  (Anti-Oxidant/Vascular support)
Horny Goat Weed (2 per day)  (PDE-5 inhibitor/NOSe support)
Korean Red Ginsing (1 per day) (PDE-5 inhibition/NOSe support)
Baikal Skullcap (1 per day) (NOSi inhibitor/antifibrotic)
Pygnoginol (1 per day)
Arginine/Lycine/Proline
Maca (2 per day)
Garlic (2 per day)

- George

As of 11-15-06, I have eliminated, at least temporarily some of the supplements for various reasons, and am concentrating on the remaining ones that I consider safest and most effective for me.  At this point I am no longer taking Aloe, Neprinol, Korean Red Ginseng, Baikal Skullcap, Lycine, or Proline..  I have modified my intake of Vitamin B6 (I now take a B-Complex once a week instead), Horney Goat Weed and Maca (I now take more of both), Arginine (I am taking less).  In place of the generic Pygnoginol I am using Flavay, a the original French OPC/Pygnoginol formulation that has significant positive research behind it, but, like Neprinol, costs a king's ransom.  But I am making headway.   A few weeks ago I experimented with using 1600IU of Vitamin E daily balanced by the K2/D3 combo.  On at least one occasion during that period I achieved a 'perfect erection' with no apparent deformity.  I plan on trying that again in a few weeks with a pure K2 formulation (too much D3 bothers me a bit) and may extend it out to two weeks to see what that achieves.  Yesterday, I spent over an hour on the treadmill combined with various combinations of HGW, Maca, and Arginine, along with carbs in the form of fruit juice and fruit cocktail.  I probably consumed around 10 capsules of HGW and 12 of maca along with a very small amount of Arginine, and last night I experienced for the second time an erection without the usual deformity.  So I know I am closing in on this.  Whether I can find a solution that will last is an open question, but I know I am close and the two things working best for me right now are the full spectrum Vitamin E and the HGW/Maca/Arginine/Aerobic Exercise/Nitric Oxide combination.  I feel really good about the Peyronies, I wish I could make the same kind of headway with my hypertension.

- George

As of 11-06-10, it has been years since I have updated this post and I really need to do so.  While much of the stuff I was taking above WAS helpful for me, Peyronie's is a nasty disease, and from time to time I would experience brief but severe periods of setbacks or flare ups which have since resulted in deformity which is why I have no longer posted on this thread.  At one point in the process I was successfully using Acetyl L Carnitine, but then I had a bad reaction to it and before I could get a doctor to prescribe Pentox for me, in a matter of weeks, Peyronie's made a major advance which resulted in deformity.  Unfortunately, I did not start Pentoxifylline earlier, since, at the time, it was the ONE oral treatment which would have stopped this disease in its tracks.  The big problem, and the reason I didn't make use of it was because very few doctors were willing to prescribe it back then.  Later on, I suffered another major setback and more deformity when there was a foul up with my Peyronie's prescription and I had trouble getting it reestablished again.  At this point, it is much easier to get a prescription for Pentoxifylline and we now also have Ubiquinol which has since been identified as being effective for Peyronie's via mainstream medical research.  These two are what I am using now and are the only two ORAL treatments that I would currently recommend for Peyronie's.  Pentox and Ubiquinol will PREVENT deformity but have NOT been shown capable of eliminating it.  I am making much progress with this combination and hopefully they will eventually reduce or even eliminate the deformity.  But the ONLY real way to deal with deformity at this point is the VED.  I want to emphasize that point emphatically, because when it comes to deformity the VED is currently the only PROVEN option.  And I also want to point out that the VED can be used in combination with both Pentox and Ubiquinol together.

- George

[myrddin]

I had my latest checkup recently with my Urologist (Dr. Culley Carson, UNC Chapel Hill) and was able to report some improvement, so I thought I'd share the same info with my friends here too.

I've been on Pentox almost 9 months now, maybe it takes that long for it to kick in or something. (?)

Background:
At 2-3 months of Pentox, my condition (upward curve) continued to worsen slightly, and had developed a slight left-sideward deviation as well.
At 4.5 months of Pentox, my condition had stablilized but not improved.

Now at 8.5 months, I can definitively say that all sideward deviation is gone.  My unit's perfectly centered when erect.  The plaque on the side (where it used to curve left) cannot be felt anymore.  Also, the upward curve is, in my subjective opinion, not as bad.  Visually it does not seem as sharp an angle as I remember it was a few months ago.  Intercourse has been easier lately and my unit does not seem to be as easily bendable, at the point of the curve, while erect.

All of this improvment has just occurred in the past 2-3 months.  It may be just due to the Pentox, but I had also made a few changes in my Oral Supplements at that point in time.  I replaced Arginine with Sann Vasoflow and tried a month on a PPC (Polyenylphosphatidylcholine)/SAMe regimen. 

Now, FWIW, my current oral intake list looks like this:

On empty stomach:
Sann Vasoflow (2 pills per day)
ALC (500 mg 2x/day)

After meal:
Pentox (2 per day)
Now Foods Gamma-E Complex (2 per day)
Jarrow PolyPC (1000mg 2x/day)
RxOmega-3 Factors (1x/day)

[Angus]

Years with Peyronies Disease: 19
Early treatments: Potaba (didn't work, made me sick), one steroid injection by uro into the plaque. No improvement years after injection.
Treatment that worked for me: The VED. I have made a total of three VED's in varying tube sizes. I used these along with something very similar to the 26 week protocol and suggestions from Old Man for almost 18 months, rarely missing a day without use. The left 45 degree curve slowly improved to 10 degrees or less within that time. The only supplement I took at this time was L Argenine. Erections became fuller and stronger, and as a result of the reduction in curve, there is less chance of any buckling or accidental bending.

[LWillisjr]

I just read a post somewhere that we don't have enough people posting in this thread on "Accounts of Improvement". I have to admit I missed this one as I normally look at the more current topics.

I for one feel extremely fortunate. I'm now 8 weeks post surgery and feel like that I have conquered Peyronie's Disease for now. I've created my own web site documenting my story and it is starting to get quite a few hits.

http://home.comcast.net/~lcwillisjr

I also try to keep my log updated in the "Meet the Members" thread.

[Hawk]

I repost this here from the "Our Histories" topic

I have been dealing with peyronies since Feb. of 2006. The peyronies progessed until my penis was bent at a steep downward angle and curved to the left. I was told that I was lucky that the condition had stopped where it had and that I should "keep an eye on it." I then read a post by,  I think it was Hawk, that spoke to 1000 mg. of vit. E, Pentoxiffylli 400 mg. and hot water soakings. In may of 2006, my reluctant urologist agreed to prescribe the drug and let me try it. He was skeptical.
In  July of 2008, he was surprised to find that my plaque had faded away in some areas and was  gone in others areas. He reluctantly said that he "may" tell others of the results. Today 11/5/08., my condition has greatly improved. I still have a  bend downwards but not very steep, and some small pieces of plaque. (which are fading) However my shaft is much fuller with a healthy blood flow. I continue to take Pentoxifylli 400mg. twice a day and use hot water soakings. I believe that peyronies is, in my case, not unlike a sport injury. It has taken a few years for me to have recovered this far. I want to thank all of you for your help and advice.
I just want to encourage everyone to keep up your hope. It may take time, but I know that positive results are possible. Thanks for this site and the hope it brings.

[jackp]

... WOW Normal Again. 

I was at my local urologist Friday with a prostate infection. This is the first time I have seen him since my implant. During the exam he checked the implant and was amazed at the success. He told me again that when his patients have special conditions he sends them to the best doctors.  For you that was Dr. Levine, mine was Dr. Milam.

Do not get me wrong surgery has its place but after all else fails. Surgery is the final option.

I will never be cured of peyronies, ... Now my peyronies has been put in its proper place on the back burner of my life.  Like you I found this forum about a year and a half ago. Just because I found the treatment that works for me does not mean I will leave this forum. I was given to much help by Old Man, Hawk, Tim and others and any way I can help others with my same condition I am glad to. I have talked to a lot of guys by PM and on the phone who have a lot of questions which I was glad to answer.

What I mean by "I will never be cured of peyronies". 

I have had peyronies for 14 years now. I am lucky in a way that about 18 months after the onset my curve straightened. The first side effect was I lost 1 1/2 inches in length. The other side effects were Erectile Dysfunction, loss of night time erections, venous leakage and corporal fibrosis. These made me 99.9% impotent. The VED helped but the venous leakage was so bad the tightest Osborn ring would not hold a lot of the time. After every thing failed I opted for an implant.

I still have the peyronies scar on top of my penis and that prevents stretching back to my normal length. So. Peyronies treated but not cured.

Jackp

First paragraph deleted to keep with the topic of this thread (full post remains under the surgery topic)
Hawk

[JPRHenry]

In the fall of 2008, I visitied with Dr. Levine as a candidate for the Xiaflex study.  I did not meet the required criteria.  It was determined my plaque/scarring had begun to calcify.   After much consideration I made the the final decision to proceed with surgery, and then applying for prior approval through my insurance company, rejection, appeals process and finally, approval--my surgery for excision and grafting was scheduled for 9am, Monday, 3/9/2009.

On 3/9 I did have the proceedure done.  Two weeks later on the 24th., of March, I flew up and back to Chicago for my 2 week post. op. check.  Everything looks well, Dr. Levine was very pleased with the results. Next Friday will be one month--I continue to mend.  The change(s)  from week 1 to 2 was amazing.  Week 3 as well.  At week 6,. we will move forward into seeing how things are "operatively".   With some anxiety, I look forward to this opportunity.   I know from initial observation, where I had once had a curvature in excess of 60 degrees, it is now gone.  Erections are good, firm , rigid and should continue to improve more as the nerves continue to mend.  Sensitivity has remained in tact.

In late June, I have another visit scheduled with Dr. Levine.  I see no reason to believe why everything will not continue to progress, this story, I believe will have a happy ending and when I speak of Peyronies, it will be used in the past tense.

Having said all of this, I will not be leaving the Peyronies Forum.  This site has been literally a "lifeline".  I've "met" several individuals that have been instrumental and a "guiding light" for me.   I was fortunate that early on, I "met" a fellow Dr. Levine patient, who had blazed the trail before me and has been nothing less than a mentor--and take this opportunity to publically say "thank you".

It's a day by day process, but I can say without reservation it was the right decision for me.  I liken the past two years to pulling a piece of string,.. Beginning with Googling "Peyronies, treatments",.. leading me to Auxillium/Xiaflex, a phone call to Auxillium, referring me to Dr. Levine, The Peyronies Forum, etc.,  As they say "The Rest is History".  A special thank you to HAWK and all the members who have made, and keep this site a viable and helpful tool to share and support all people and their families dealing with this  physically, mentally and emotionally taxing  and devastating (I hate referring to it as a "disease") "condition".  I have said, if we all were asked to write a chapter for a book on Peyronies,  all of our "chapters" would probably sound eerily the same---and they would be chapters of frustration and sadness. 

Regardless of the individual and different therapies we elect to choose, this Peyronies Forum is the most valuable sharing and sounding board I have ever encountered. My updated post is twofold,...  One it to share my expereince with all of you, but most of all to reinforce what a wonderful site this Peyronies Forum is.  Simply the best.  I thank all of you again  for your unselfish support and will do my best to  return that favor when called upon. 

JP

[Jackieo]

Update by JackieO
I was encouraged to post my recent improvement.  I hope this is viewed as encouragement to "others"  suffering from this disease and I personally wish improvement for all of you.  I have been plotting my improvement over several months and will attach a sketch (trace) as evidence of the improvement.
My case:  57-years old, living in Seattle.  I suffered a tennis injury and had Achilles Tendon surgery in February, 08.  About 6 to 8 months later I noticed a change in my erect penis.  I noticed a reduction in length, girth, and a gradual curvature to the left.  No bumps.  No indentations.  It was/is my belief that I was tangled in the hospital gown will lying on my stomach during the tendon surgery...at which time I must have cycled through an erection (or two) and was confined by the gown (*).  I have never experienced any rough sex or any specific sexual "incident" that led to pain or discomfort. 
I have tried to maintain a good diet and have tried to adhere to a regular exercise program.  My diet is healthy-heart w/ an abundance of protein (unfortunately, I am allergic to all fish and seafood).  My diet is low in flour, sugar, etc.
I am on Potaba (12 pills daily), L-Arginine, and Cialis.  And, I use the 3-tube VED on the 26-week program.  I am currently beginning week 20.  I take many supplements (which I have previously listed on this forum).
The following statements refer to the attached drawing: 
The dark base-line outline (center) is what I know my erect penis measured years ago.  The lightest dashed line (leaning far left) is my estimated "extreme" worst curvature which occurred between 11/08 and 03/09.
The two dashed outlines in the middle show the progressive improvement in the correction of my curvature.  One was traced on 6/15/09.  The other was traced on 7/20/09.  I am over-due for a new measurement.
I have experienced an improvement in regaining length and I have regained all, or most, lost girth.  These improvements have been noticed by my partner and that has been a big boost to my ego.
When the disease first hit I tried to avoid having an erection (thinking each time was more damaging).  But,  I found this forum and became aware that "erections are good".  First and foremost, I attribute any gain I have had to the VED...supported by the simple PAV program.  I am thankful to the diligence of "others" posting information on this site.
Also, Thank-you to Hawk, Old Man, Newguy, Cowboyfood, and many others for being there for me.
I previously posted how I established the base drawing for my "record".  If anyone needs clarification give me a pm. JackieO
(*) Is there a doctor in the house?  I talked to two Orthopedic Surgeons who both confirmed that my hypothesis (being tangled in the hospital gown while lying on my stomach during surgery) could easily have been my "injury".  They said it is a situation which has never (to their knowledge) been addressed and should be addressed at a national level (within their professional practice).

[skunkworks]

So around 1 year after the first injury, I can conservatively say I've got this thing beat. I have pretty good erections, and am successfully sexually active.

My penis no longer feels hard while flaccid, and the dents I have are minor (my gf says, they still look huge to me). I've even measured a 5mm size increase in erect length.

Treatment updates:

Pentox = 3 daily
low dose naltrexone = 3.8mg per night
vitamin e = 3 x daily
arginine = 5g a day
magnesium oil applied daily

traction = at least 5 hours a day
ved = once daily for 15 minutes. I am using the single cylinder protocol despite having a 3 cylinder VED as it has worked better for me.


With regards to the original injury, it happened during sex, I was able to continue and finish. However not long after that I developed severe pain whenever I had an erection, a bend to the left and pretty bad dents mid shaft on the top left. Erection quality dove to basically nothing for awhile, ( I did not know it was Peyronie's), then after adding in horny goat weed they came back somewhat but my penis was never fully hard, especially the head, which did not seem erect at all.

Lost some length, but no girth (on average, thinner at the dent).

Got on this forum, used the treatments listed above, and I have a pretty much normal penis again. WOrks well, very slight indentation still, but almost no bend to the left. I have also regained some length.

More specifically on erection quality, for a time I did use Levitra specifically to be functional, but now I do not need to use it (although I do sometimes still as there is lingering mental doubt about erections, you konw how it is). I am fully functional without meds.

nb. If this post is missing any details you'd like to hear, PM me the question and I will update this post with the answer.

[boomerang]

Around about 2001 I started to notice my erections did not have the length as before. I told my wife but she said I was imagining it!  However over the next 8 years my erections got much less potent.  After having a major cardiac event and spending time in hospital in two cardiac wards and Emergency Assesment Unit a total of five emergency visits to hospital in 2009 I realised that something they were giving me worked while I was in hospital but then when they sent me home I relapsed.

Just prior to this sequence of events I had been to the Doctor and Sexual health clinic because of a sore lump near the end of my penis.  During my stays in hospital I got more lumps inside along the top of my penis and eventually my penis bent like a bannana during erections. A visit back to the sexual health clinic confirmed I had a severe case of peyronie's and also dupuytren's contracture (which they said was related).

They eventually took me off of most of the medication at one time or another only for me to relapse but by then I had noticed that they always injected me with Heparin (blood thinner) as a matter of course when I was admitted to hospital.  I asked to be given heparin to inject myself at home. I did this for about six months until they decided to take me off of it. (Despite it working)

My erections improved but my penis was 2 inches shorter and bent upwards in an unuseable way. Also when urinating without an erection I missed the target due to the bend.

I eventually decided to stop taking all the medications they prescribed after reading on drugs.com that peyronie's was a known side effect of bisoprolol (beta blocker)  and the statins made me sore all over. This was a risk due to my cardiac problems and erratic heart rate.

I started to try Neprinol because it claims to thin the blood and claimed to help peyronie's and because I had been on Heparin too long and they were trying to take me off it.  Because I had been using a blood sugar tester, I noticed that neprinol really did thin my blood because before I had to squeeze the blood from my finger but now it flowed of its own course and was a brighter red.

Since then my erections have been normal like before 2001 but my penis is still bent but not as bad as before and a bit longer and urinating is more accurate.  I have been taking neprinol AFD (3 capsules 3 times a day for three months and now 2 capsules 3 times a day for three weeks.  I have also toyed with a VED and will start to use this a bit more now. I don't have an erratic heart rate anymore either.

[GS]

A SLIGHT, BUT SIGNIFICANT IMPROVEMENT.

I am in my 25th week of the 26 week VED therapy and I feel certain that I'm STILL going to be here in my 25th week of my 2nd 26 week therapy.  My progress has been very slow, but I am making progress.

The 45 degree "kink" in my erect penis has turned into more like a 45 degree curved banana.  In otherwords the degree is about the same, but it is now a much more gradual curve.

I have also regained quite a bit of girth and length...not back to normal, but I'm definitely bigger than I was 25 weeks ago.  My fiancee' just commented on how much bigger I am last weekend.

As to my schedule; I am using the VED for about 20 minutes on a daily basis, taking Pentox twice a day, 400 IU's vitamin E daily along with my normal vitamins and supplements.  Somewhere around 7 weeks ago, I started using a DHT gel applied to my penis every morning after my shower.  I think the DHT gel has helped with nocturnal erections and erections in general.

I wouldn't call my improvement anything to write home about, but I will call it "an improvement" and it gives me hope for the future.

GS

[danh]

I,m on my 2nd protocol. About halfway through. I have had great success/improvements with the VED/Cocktail. I started with a double curve. Left and up. Very scary.  The up curve is gone and the left curve is straightening up somewhat. And erections have improved 100%. I had the left curve for some time before starting the protocol, but the up curve (pain) appeared after an injury. That's when I found this site. IMO this therapy is the reason I have improved to this degree and this quick. Great help and advice. I'm very happy with the results. Will continue with the therapy. ERO has taken me off Pentox. I'm to continue with VED. Thanks to all !!!!!

[Brightdog]

Before Peyronies Disease: 8" erect length.  At worst Peyronies Disease (after Verapamil injections): 160 degree lateral bend. Close to 8" on one side, but probably only about 3 1/2" on the short side.

Treatment: Surgical graft/excision/plication July 26, 2010. Post surgery stats: flaccid length 4 5/8", flaccid girth 4 3/8", erect length 5 1/2", erect girth 4 5/8. No stable erections. Began traction September 9, 2010. Began VED September 22, 2010.

Results as of November 8, 2010:

NO CURVE.  SOME LUMPINESS, BUT NOW ABLE TO HAVE A STABLE ERECTION.
Flaccid length 5 1/8"  (a gain of half an inch) Flaccid girth 5" (a gain of 5/8")
Erect length 6" (a gain of 1/2" - I had some trouble measuring and got different stats each time, but today is definitely 6") Erect girth 5 1/2" (a gain of 7/8")

YES!!! Success is possible. And I am not done yet. Take heart, gentlemen. Find the therapy combination that will work for you, stick to it, and have faith.

[Davea]

My history with Peyronies Disease started about 3 years ago when I was 56 years old. I was then living in a country where medical care was limited and access to specialists such as urologists was non-existent.

Unlike most of the accounts I’ve read on this forum mine started when urinating one day. I noticed 2 lumps, one at the base at one just below the head. I thought that it may be some urinary tract problem and just ‘hoped it would go away’. A year later I moved to another country where medical expertise was a little, but not much better. I consulted a urologist who confirmed my worst fears that it was Peyronies Disease and prescribed Vitamin E. Actually, I think, through the information I found on this website, that I knew more about Peyronies Disease than he did. All that the vitamin E did was to deform 2 of my fingernails which recovered when I stopped taking it.

About a year after first noticing the lumps the ‘usual’ symptoms of Peyronies Disease appeared; loss of about 2” in length and about three-quarters of an inch in diameter; a ‘hinge’ at the base and an upward bend at both the base and the head of about 45 degrees; ‘houglassing’ at both the base and the head and the ‘turtle’ effect. At about the same time I noticed that I had the first signs of DuPuytren’s contracture on my left hand (lumps on the tendon in the palm).

Like everyone I was hoping for the Silver Bullet cure and was closely following the Auxillium trials through this website. This seemed (and still seems) to be going nowhere fast so I started looking for other possibilities. I was quite surprised to find that there seemed to be a significant number of postings of improvement using a VED. I tried to get the medical grade VED from the US but I didn’t even get a reply from the companies I tried. In the end I went for the sex-shop single cylinder type. I used it for about 2 months with JackP’s protocol and noticed a gradual improvement of just about all of the symptoms. Then came disaster; I did the very thing that everyone said not to do; held too much vacuum for too long (30-45 seconds instead of 15-20). I had bruising and swelling that took 2 months to go away. During this time I lost all of the improvements I had gained. Thanks to Old Man and my fantastic wife I didn’t go into total meltdown (although I kicked myself for weeks).

Eventually I did manage to get the proper medical grade, 3-cylinder Augusta model from IMedicare in the UK. I’m now exactly half way through the 26 week protocol. I’m not taking any other meds, supplements or vitamins (I can’t get them where I am). Incidentally, I’ve shaved around the base of the penis for years anyway and the lubricant I used from the beginning was and is good old Johnson’s Baby Oil; a small bottle lasts for weeks and I’ve never had problems with lubrication.

So – improvements:
Turtle effect – gone; hourglassing – very slight symptoms remaining; hinge – this seems to come and go but the longer I use the VED for the less I notice it: bending – something like GS said in his account, it’s gone from a double bend to a single banana curve. Erections – much improved; I’ve noticed that nearly everyone who has an improvement with the VED talks about improvement in night time erections. Me too but I’m curious to know why this is. Another observation is that when I first started the ‘A’ tube seemed the most effective; now it’s the ‘B’ tube.

Interestingly, the lumps that I first noticed have completely disappeared and the DuPuytren’s has remained exactly the same with no bending of the fingers.

Will I continue? Absolutely!

Will post more further into the protocol (and I’ll make it shorter next time). If anybody has any questions drop me a line – I’d be glad to help if I can.

Good luck to you all.
Davea

[George999]

I have an improvement to share.  Last night I woke up with an erection and a strange sensation in my penis.  It was a fine grained tearing sensation accompanied by a sort of prickling/burning pain.  I then discovered that the last half inch or so at the end of my penis most distant from my body was inflating to a rock hard state and near normal circumference.  That part of my penis has been about 1/4 of its normal circumference for the last four years and during that time has always been soft and rubbery during erections.  So needless to say I am ecstatic and extremely thankful for this amazing gift that comes just in time for Christmas.  And I am now more confident than ever that the best is yet to come.  - George

[DonForGood]

NINE MONTHS---IN AND OUT.  GRATITUDE! GRATITUDE! GRATITUDE!

I developed Peyronies Disease nine months ago---with a dreaded tilting to the right of the head of my penis...noticeably and painfully.
I wish I could say I was a calm individual who takes things in stride...but I am not. So I went full on into research and since I live in New York City, I had available to me a great urologist who completely fixed me up.
First of all, I must start out by saying that I did not have a horrendous case of Peyronies Disease but to me it was devastating. Dr. M. put me on a treatment of Verapamil injections, six over 13 weeks, and also four hours each day of penis traction. None of this was inexpensive. I didn't care.
Within just two months, my penis completely straightened out.
But then, I had what is called "distal tapering" which, in essence, means the front bit of my penis (about the first inch behind the head) was much thinner than the rest of my penis. It had pinched in all around. The cause--- Peyronies Disease? The stretcher? Maybe both? So Dr. M said it was time for me to stop the stretching since that doesn't work for distal tapering and to buy a medical grade VED. Which I did. That was about 500 bucks. And worth it. I have been pumping (manual) ten minutes per day---very SLOWLY and with as LITTLE pumping as possible...just enough to keep me hard for ten easy minutes.  And lo and behold, within just a couple of weeks, I am plumped out again.
I have to say, I am back to about 95% of my original penis when it comes to how it looks and feels. My doctor said that I was lucky in that my level of Peyronies Disease was much less than other men, overall, and that he has seen men who were distorted in three planes. My heart goes out to anyone and everyone with any sort of distortion. My curve to the right, followed by this pinching in all around toward the top (and for one month, I was very shortened) was enough to make me exceptionally upset.
I also used warm wet cloths fifteen minutes each day on my penis in the morning---which seemed to help keep the pain down.
And though I did not want to have sex and I got depressed about the whole thing, quite deeply, I would make myself have sex with my partner and even though it hurt and it all looked so deformed at times, I proceeded. BLOOD in your PENIS is always good. So it is important to get it there.
So to sum up, this is how it went for me: 9 months ago, I had Peyronies Disease, an obvious curve to the right. 7 months ago, I had 6 treatments with Verapamil shots over three months. Every day, I used a Penis Traction device for up to 4 hours, increasing the length by .5 cm every few weeks.  For  7 months, I also used a warm wet cloth on my penis fifteen minutes every day. I discontinued the traction and warm wet cloth three weeks ago and now I just use the VED once per day for ten minutes. I see and feel my original penis. I am back to very close to normal with just the tiniest bit of distal tapering (the pinching in).
I feel, as I have written, so grateful. IF YOU ARE READING THIS and you are NEW to having Peyronies Disease...do something about it sooner than later. My doctor (and the research overall) insists that the sooner you get on top of this thing, the better off you are. In my case, this has proven to be true.
My doctor had no patience for any "alternative treatments"---though I did try a few things. Problem with Peyronies Disease is that it is hard to know exactly what is working. I like the L-Arginine. I think staying away from booze and cigarettes is probably best, too. Mostly for circulatory reasons.
Good luck everyone. I am one who easily falls into despair---but I stayed on top of it every day and I came out of it in just 9 months. Again, anyone who is new to Peyronies Disease, taking care of things right away is better than waiting. I have read much of what many of you have written over the last 9 months. Thank you for being candid. My positive energy is now all for you!   Don

[newguy]

Just today, I've seen 2 significant improvement posts elsewhere on the forum. People often don't post in this specific thread, maybe they don't know it's here. Plenty of people are making improvements though. Some in terms of pain, others curvature etc.

[MUSICMAN]

I would like to state that my experience and condition is my own and as we know each man has a condition unique to them. Also any statements are of my experience and opinion and may not apply to others.

I was diagnosed with Peyronies in Apr. of 2006. I am not sure what came first the pain or the bend. A quick search on the internet made my own personal diagnose. I started taking vitamin E and made a appointment with a local urologist and he confirmed that I had Peyronies disease. As the standard, he used the "lets wait and see as sometimes it will improve on its own. I took the vitamin E ( did not help ) and after a few months the pain stopped. As things seem to stabilize I felt that my bend was close to 90 deg. Sex was impossible.

I saw another urologist and he offered Plication  surgery but I decided against that.

About this time the depression and mental anguish was at its worst. I searched for the best urologist with the best experience in Peyronies that I could find. I made a appointment with him and he offered me grafting surgery as the best way of correction. I might have gone with this but the cost was not possible for me as what little insurance I had would not help. I asked him about Pentox and the Ved but was told it would not help me. I did take Pentox and used the Ved but this did not help me.

I read on the forum about the Auxilium IIb trial of Xiaflex and found that above doctor was one that was listed doing the trial in my area. I was accepted for the IIb trial. started it in Aug. 2008 and finished it. I was one that received the placebo so I did not have any improvement. I was told that when the phase III trial started I would be in the Open Label group and receive the real drug. The wait for the new trial was mentally unbearable.

I started the phase III trial in Oct. of 2010 and finished the first part of Aug. 2011. At the beginning of the trial I had 78 deg. bend to the left. I can't say I had much pain or reaction with the injections but did have some bruising as did most. After the first round of two injections ( there were 4 rounds with a total of 8 injections ) about two weeks I noticed a big change in the bend. I think I went to about 35 deg. At the end of the trial ( Aug. 2011 ) my bend was down to 10 deg. I gained back 4 cm in length. My girth seems to be back to normal with no dent.

I would like to say that there is hope and there are miracles. I would like to thank my doctor, his assistant and Auxilium for making my miracle possible.

I have no idea when the drug will be approved by the FDA as the testing is not complete. Please remember my experience may not be typical. If anyone wants to send me a PM, I will try to be of help.

                                                                                               MUSICMAN

[BayMan]

I have held off on telling my story as I didn't want to jinx myself, but after 16 months post improvement, it seems stable.
My background was 70 degree bend on erection, extreme pain, confirmed calcification on ultrasound. For me the cause was repeated trauma over a couple of years with an extreme bend during sex causing the final injury and pronounced bend and pain. This occurred in Nov 2010 and sent me onto this site and also to get an appointment with Dr Lue at UCSF. I was given confirmation of the calcification via ultrasound, but at this point it had only been 3 months after the major injury and I was told it could still heal on it's own and to give it time.  Bend was 70 degrees and pain was a constant 8. 

I started using Vitamin E and DMSO. This produced no benefit for me and after a month I gave up. I then read on this site about hypertherapy spa treatments and started this course and also started to go to a hyperbaric chamber 2 times a week.

My exact regimen was as follows -
4 times a day I soaked in my bathtub with a temp of 106 for 15 min. After each soaking I made myself have an erection for 10 minutes (but no touching or forcing any bend, just natural. First time I tried to bend it back and that was huge mistake as pain went through the roof for a week.)
Hyperbaric chamber for 30 minutes on Monday and Thursday.

After 4 weeks of this regimen, there was a dramatic improvement on the bend during erections after the soaking. I could see the bend lessening and pain was subsiding. At this point, I stopped the Hyperbaric treatment and concentrated on the soaking everyday. After 2 more months, my erection was almost normal and I reduced the treatment to 1-2 soaks per day. Pain was still around, but much less.

After 5 months, pain was gone unless I push on injury spot and curve was down to 10 degrees.
After 8 months, curve was basically gone and pain is no big deal.

I continue to soak in my jacuzzi at 104 F every day as a long term therapy because I know the calcification is still there and the bend could return, but I'm currently at 90% of original and I can work around any residual pain or discomfort. 

Notes:
During my 2nd week, one day I messed up and soaked for 15 min at 109 F. I didn't realize the new digital thermometer was off and this caused my testicles to turn black and sent me to ER. (very embarrassing). But, after this soaking, my erection changed 20 degrees and this to me was the turning point in my treatment. Not sure if it was coincidence or the ultrahigh temp, but I noticed the changed in bend and pain immediately after exiting the bath and getting an erection.  (Please be careful and use 2 thermometers to check water temp as it's hard to tell by touch the exact temp.). 

I know it might have healed on it's own, but I'm very grateful for this site for having this forum to help. I really believe the hot soakings were the difference for me. After each one, I just felt better and could see the difference happening so quickly.

Good luck to everyone and I hope this proves beneficial.

[jetedwardz]

it took about 1.5 or so years but the bad crap that happened on the left side of my dong after getting elbowed finally went away. it was actually mor like 2 yrs i think and at its worst my bend was a 45 or a bit more and during that time i was thankfully not gettin any from my gfriend cuz she had the sex drive of a panda;which resulted from the birth control mirena, and it also made her seem like she was pmsing everyday.....uve been warned.i wrote thankfully cuz i doubt id of been able to get it up due to self consciousness. any ways i noticed the most dramatic results from using the ved every day, doing hard massages of the scar tissue multi times a day ....and also i believe the bromelain, ubiquinol and arginine and acetyl carnitene made themost dramatic results.actually i forgot, ive done all the aforementioned except bromelain for a long time but when i added BROMELAIN AND ALSO SERRA ZIMES THATS WHEN I NOTICED THE MOST DIFFERENCE. AND BOTH A RELATIVELY CHEAP COMPARED TO THE damn ubiquinol. now tho i have a slight indent on my left side cuz BEFORE SEX A YEAR OR SO AGO I BENT MY DONG IN THE OPPOSITE DIRECTION OF THE BEND AND HEARD A LOUD POPPIN NOISE AND FELT A LOT O PAIN.....O WELL IM MNOT WORRIED AS I KNOW THE DRILL AND THERES NO WAY ITS GOIN TO AFFECT AS LARGE AN AREA AS THE ELBO I TOOK BYE

[Buckeye]

Hi all,

I've been meaning to give an update and to save retyping, I've copied and pasted my response to Jiminmn in a private email. I've edited it somewhat to respect his private email and also because I wasn't comfortable naming the doctors with whom I had a bad experience. 

Buckeye

Here's my Update:

Hi Jiminmn,

I've just finished my series of 12 verapamil injections and the one month follow up with the duplex ultrasound. Before I go into the results for you, let me share my TwinCities experience. I had been going to Dr. XXXXXXX for Erectile Dysfunction at the recommendation of my regular doctor. Because Viagra et al wasn't really working for me and with the side effects he recommended Trimix injections. He didn't like vacuum pumps as he said in his experience no one liked or stayed with them. For the first injection he gave me 30 units and it gave me a tremendous erection, but at the 4 hour time limit I had to call because it was still erect. As it had gone down some he said give it more time and it'll continue to go down which it did. About a year after being on the trimix I experienced a misthrust and injured myself. A few months after that I noticed a curve beginning to develop. Dr. XX response was that there was no effective non-surgical treatment and that I should wait to see how bad it gets and then decide if it's bad enough for surgery. Since I also had Erectile Dysfunction he said he would do an implant. I developed about a 40 to 45 degree upward bend. He said he would recommend living with it as long as I was able to have sex. That's when I decided to get a second opinion. I really wish I had done so earlier.

I looked on Angie's list for TC urologists and came up with Dr. ZZZZ. In the meantime I had also begun doing more research and came across the forum. I prepared as recommended on the forum with articles on pentoxiphylline and other non surgical treatments of which Dr. ZZZZ was not familiar with. He didn't even know what Pentox was, but after he did some of his own research agreed to write me an Rx for it, but he wanted me to try verapamil topical salve and consider a vacuum pump. I went ahead and tried the Verapamil, but after about 2 days knew that wasn't for me for the next 6-8 months. I also read a number of articles one by Dr. Levine that verapamil salve doesn't work and a lot of negative stuff from the forum about the company that made it. Talking to them myself I experience a lot of the high pressure sales and then very hostile response when I didn't continue using it. Just like the forum said!

At this point discussing the situation with my wife, I decided to either bite the bullet and go to Chicago to see Dr. Levine or try the Mayo Clinic. I called the Mayo to set up an appointment with their Peyronies specialist and they told me he was leaving to go to another hospital. I later found out he went to Rush Medical Center where Dr. Levine practices. So, I called and set up an appointment in Chicago with Dr. Levine. To make a long  story short, it was one of the best decisions I ever made. He was the only one of the 3 that  I saw that really knew anything about Peyronies, but more importantly it was obvious that he was very concerned with me as a patient and a person. The same goes for his PA Gina.

He continued me on the Pentox, L'argenine, CoQ10, and 5 mg of Cialis and started me on the Fastsize traction device. I had, after seeing Dr. ZZZ, purchased a single tube vacuum pump and converted it to a 3 cylinder myself and began the 3-cylinder protocol discussed on the forum. My design for the pump in on the site. I did that from late January until late April when I first saw Levine and then continued doing both until August when I went back to see Levine for a 3-month check up. I was making some progress under this regimen so I decided to continue it for another 3-months. In October I went back to Levine and had not made any further progress so I began the VI treatment. He indicated that there was a PA in the TC that had worked for and trained under him that could give me the injections and then I could go back to Chicago for the interval check ups.  I ended up having 5 of the 12 injections by that person. I really liked him as a person, but I was experiencing a lot of pain and swelling with his shots. I didn't know that was not a usual case other than the first shot by Levine I didn't have that problem. The last 2 shots I received in the Twin Cities, I got large hematomas and couldn't wear the fastsize device for about a week. After that I decided to go back to Levine (Gina actually gave me the shots after the first one by Levine) and I didn't experience any of those problems again and I started making rapid progress. To find out, the Twin Cities person had deviated from the protocol that Levine had prescribed for me. After the 12th shot Levine had me wait a month and then come back for a duplex ultrasound. I went from about a 40-45 degree curve down to a 20 degree curve. I regained most of my lost pre-Peyronies Disease length and actually increase the girth. I had continued using the fastsize throughout the process and then the pump only intermittently while on the injections primarily because of the soreness from the injections and the fear that I would cause more bleeding after the shots using the pump. Levine wants me to come back in November for a follow up or earlier if I have problems. I'm continuing the fastsize and vacuum pump but more on a maintenance mode that the aggressive schedule I maintained before. He had me go off the Pentox (I had been taking it for about16 months) and left it up to me for the L'arginine and CoQ10 and Cialis. All have other benefits for the circulatory system (although the Cialis is expensive - I get it from Northwest Pharmacy in Canada - Gina said a number of their patients get it there). I'm staying on them for the time being.

Jiminmn, bottom line, I don't have a urologist recommendation here in the TC, but my experience was not good. I'm glad I decided to go to Levine and that's about the most important thing I can tell you. It cost more but it was worth it.

[rd]

Just wanted to update everyone as to my progress. Most of you have probably seen my reports a while back in the stem cell thread. I had the treatment which after a year cleared two of my lumps Only to have 3 more pop up later. Of the remaining 3 lumps one has just recently within the last 3 month gone completely away. The remaining two seem to be acting like the one that just recently went away, changing shape and toughness. I have also seen improvement in my deformities. I never had shrinkage or curve only hour glassing or dents. My penis seems to be slowly filling over time so that the hour glassing/dents are slowly fading away. After trying oral meds and then the stem cell treatment it occurred to me to look at my diet. All I am doing since the stem cell treatment 3 years ago is eating no processed food which took me a while to get to that point as I learned. I tried a bunch of things starting with the whole plant based diet and felt great going vegan for 6 months. But eventually started to get to thin and feel two weak and run down. So now I kind of do the plant based diet thing but flip flopped it and am on a meat based diet consisting of all grassfed/natural diet free range animals organic(no hormones antibiotics etc). I also buy all my fruits and veggies from local organic farmers markets. My main staple is meat, pork, lamb, goat, cow, etc with sides of fruit or veggies while snacking on berries which I have been doing almost a year now. I must note this is the best I have felt in years. I can actually now masterbate and orgasm with out any pain which I believe comes from dietary changes. Before I would be in pain for days after orgasm. My joints and old injuries don't hurt like they use to. My energy levels have sky rocketed! I also hope to report back in the coming months of the remaining lumps having faded away as well. 

29, UK - newly "diagnosed", awaiting 2nd opinion

Started by 29mUK Introduce Yourself

Post-injection modeling & straightening: why only a "spontaneous" erection?

Started by Perdido_Key Xiaflex - Trials and Treatment results

Is The "Middle" Cylinder The Same As The "Standard" One Cylinder Size?

Started by maxster Vacuum Erection Devices (VEDs) for Peyronie's Disease