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Author Topic: advice appreciated  (Read 3213 times)

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retiredinGA

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advice appreciated
« on: June 16, 2011, 05:42:51 PM »

How I ended up with Peyronie's is a mystery but I did notice an erection that was unusually intense a couple of weeks prior to noticing a hardness in the base of my flaccid penis. This intense erection seemed like it would burst through the skin and I didn't have another self induced erection for awhile because I was worried about this unusual occurence. I do not take any Erectile Dysfunction drugs, so that is not the reason. I had previously noticed, about a month earlier that a lump had formed in the palm of my hand. At first, I thought this was a callus and later a cyst. I was actually told by my doctor's PA that it was a ganglion cyst. After noticing the extraordinary firmness of my flaccid penis, my erections started being painful with stinging pains near the glans penis. I made an appointment with my physician and he had no clue what I had other than some fibrosis in my penis and he sent me to a Urologist. The Uro's PA knew right away that I had Peyronie's but he nor the Urologist ever mentioned the term Peyronie's Disease. The PA seemed to think that it was caught very early and said that most patients wait until they have curvature before seeking help. Both thought that the use of Pentox, Vitamin E and L-Arginine would improve my condition and limit it's adverse effects, even though I was told there was no cure.

I asked the Urologist on my follow-up visit about the lump in my hand that I had now suspected might be Dupuytren's Disease and he looked at it and said that he agreed that it was a ganglion cyst and that it was a mere coincidence that it appeared about the same period as my Peyronie's nodule. Going to a Orthopedic doctor a week later to see what could be done about my ganglion cyst, the Ortho and his PA both confirmed that I indeed had Dupuytren's like I had first suspected. There was no contracture but cords have developed with some puckering to the skin above the lump. Now, I was confused as to how much to trust doctors who are often wrong and usually spend too little time with patients to fully understand their concerns and problems. Being a 52 year old man with no previous health concerns other than borderline high cholesterol, I was shaken a bit by the Peyronie's and Dupuytren's diagnosis. I have been on the Pentox, Vitamin E and L-Arginine now for 3 1/2 months as well as Ubiquinol. My Urologist told me not to return for 6 months, so I am on my own and seeking any further advice from those who are also afflicted by this condition. I tried Acteyl L-Carnitine but had some adverse effects (lightheadedness) immediately and discontinued. I have no problem with erections but have limited my self induced erections (masturbation) to twice a week and although I do notice an occasional morning erection, I can't say that they are often. I have a hinge effect that only causes a bend when fully erect and that can be easily straightened with a slight downward pressure. I have slight waisting on both sides at the hinge (bend) location. My questions are whether it would be beneficial to induce erections more often than twice a week (with or without masturbation) and if trying to straighten the curvation with slight hand pressure is safe (not likely to cause additional damage?. My Urologist just smiled and told me to have all the sex I could and that it would not hurt anything, but I've heard that Peyronie's might be a wear and tear type disease of the penis and therefore I have limited the wear and tear while hoping to recover. I have not had trouble achieving an erection but I do not feel confident enough with my current condition to initiate a new sexual relationship with a woman. Any advice would be appreciated.
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retiredinGA

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Re: advice appreciated
« Reply #1 on: June 17, 2011, 12:03:34 AM »

After reading so many comments on this website, it is surprising how many Peyronie's victims are young. I had read that the disease usually manifests itself at an average age of 53. I suppose that injury-caused Peyronies could happen at any age, but as bad as I feel at having this condition at age 52, I could not imagine dealing with it in my 20's or 30's. I don't think it is a mere coincidence that my Peyronie's nodule suddenly, seemily overnight, appeared within a short time after the sudden appearance of the Dupuytren's lump on my hand. I've also developed burning feet, especially the heels and arches and worried it could be Ledderhose Disease. There is no sign of a lump or cords in my feet and Ledderhose Disease isn't supposed to be painful, so I am now suspecting foot tendonitis. Although, I started Pentox almost immediately after finding my Peyronie's nodule, the condition that initially did not cause curvation of waisting, within a month showed signs of denting (hinging) on the dorsal side about midway and later a slight waisting on each side. There doesn't seem to be any change it the size or firmness of my erections and this has remained stable for the last 2 1/2 months. I know that it is too early to know what the ultimate outcome will be or how different things would be had I not started any oral treatments. Like I said below, I am just wondering whether avoiding daily erections is beneficial or detrimental, especially since so many knowledgable contributors keep recommending VEDs. One "expert" told me that erections are healthy for the penis but he also stated that physical manipulation could cause additional trauma potentially worsening the condition and warned me against trying to straighten the penis with my hand. My hinge (bend) is probably not more than 10 to 15 degrees when fully erect and easily straightened with slight downward pressure. I do have mild pain however after manipulating (stretching) the scar tissue or plaque.
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Skjaldborg

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Re: advice appreciated
« Reply #2 on: June 17, 2011, 12:34:26 AM »

retiredinGA,

A lot of folks here, like myself, got this at a young age. I came down with it at age 29 (now 32) after a very minor injury that occurred during sex. I am in extremely good health, 5'11, 155lbs, run and exercise almost every day (and karma-wise have never slept around or broke any hearts) so the disease came as quite a shock. Luckily, I got on pentox right away and I have a very mild case-just a little hourglassing, a tiny bit of curvature and a smidgen of shrinkage. I had significant pain at first but that went away after the pentox. I consider myself lucky. ("Lucky," is a funny word...)

Regarding erections and sexual activity, these are good and are important for penile health. Bending or manipulating an erect penis is a bad idea though. There are safe ways to "stretch" the scar tissue with VED (vacuum erection devices) or traction devices. There are some good threads about these two devices that you may want to check out.

Stick with the pentox and perhaps add ubiquinol, an over-the-counter supplement that some people here have said is beneficial. Good luck and you are in good, if slightly bent, company. :)

-Skjald
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Tim468

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Re: advice appreciated
« Reply #3 on: June 18, 2011, 10:13:07 AM »

Dear retired in GA:

I would add a VED instead of inducing frequent erections. I worked on getting a daily erection and nurturing it  ;) for a while, and that actually was helpful in my opinion at slowing progression of the Peyronie's for many years. I now use the VED and that is much better and in fact reversed some of my changes.

Tim
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52, Peyronies Disease for 30 years, upward curve and some new lesions.

retiredinGA

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Re: advice appreciated
« Reply #4 on: June 29, 2011, 04:35:19 PM »

I've ordered a VED. It's worrisome to read so many comments about people dealing (suffering) with Peyronie's for years or even decades. When I was first diagnosed, it was mentoned that I had a slight case and that only severe cases end up with curvature. I believe the reason the Urologist's assistant thought it was a slight case was because there was not a large area of plaque and I had not experienced any curvature, but that first examination was within a few days of the first manifestation of the firmer base of my flaccid penis. I started Pentox, L-Arginine and Vitamin E immediately but within a short time, there was a large area of plaque and then indentation, waisting (hourglassing) and upward curvature only when fully erect. That situation has not changed and I've been on these oral treatments (including adding Ubiquinol) for over 3 1/2 months. My Urologist, after one follow-up visit of two minutes, told me that I would see improvement with these oral treaments and told me to return in 6 months. At 52 years of age, I am pleased that even Peyronie's has not affected my ability to get and maintain erections, but I can not escape the mental anquish part of this disease not knowing if or when I may ever get better or perhaps even get worse. If my own immune system has tried to repair any of this fibrous material (plaque/collagen) I see (feel) no signs of it so far. For those who have improved, without surgery or injections, was the recovery over months or years? Is Pentox more for reducing inflammation pain and/or reducing worsening of the plaque or can it also help to repair the scar tissue that has not yet calcified? There are so many questions and I feel that people who have dealt with this condition themselves know more than many doctors do, who either have never heard of it, or never had it. I am sure that many of my questions may already be answered in other parts of the forum but it takes a lot of time to read through all the remarks that don't answer my questions to perhaps find one that does.
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George999

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Re: advice appreciated
« Reply #5 on: June 30, 2011, 10:07:13 PM »

RELAX!!! Dealing with Peyronie's is a VERY long term project.  You are doing all the right things and eventually you WILL see results.  Additional efforts to improve your general health will only speed up the process.  These would be things like vitamin D levels, blood sugar levels, insulin levels, lipid levels, all the metabolic syndrome related issues.  Peronie's is often is not always peripheral to metabolic syndrome even if it is not technically present.  - George
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