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