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Author Topic: starting my protocoll here. (food suplements, coconut oil, massage etc)  (Read 6277 times)

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east side swiss

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hello dear forum members,

I hope this is the right place to start this as I want to track my treatment methods and results.

Though mentioned in other topics before I will try to precisely describe where I come from and where I am at.

Age: 33

Other health issues:
Doctors suspected I might (have) "suffered" from "lichen ruber", a autoimmune disease, but my doctors also explained to me that in many cases "autoimmune" is a term they use when they don't know what it is, where it comes from and how to treat it. I had good experience with a combination of Chinese medicine and the infamous MMS, which is basically just chlorine dioxide. after a long time, about 15 years, I think I can say I got rid of that terrible thing. It used to express itself as a terrible inflammation of the throat, the gums and the tongue. It is not contagious and I saw about ten different specialists about it. In the end an internet forum about MMS and its friendly members helped me to overcome it.. So here I am, finally free of this ugly thing and face Peyronie's..   :o

first symptomes:
I discovered pain and a slight curve around the 2nd of August after having Sex. I didn't think much of it and told myself, well, maybe we were going a bit rough at it.. (which wasn't the case actually, I have had much wilder and tougher Sex before..)

The next night I told my girl about my concerns but when I showed her my errection she thought it looked normal. There was a tiny little hourglass sign on the left side but she said, that is probably nothing and Iwas like "okay, I am oversensitive or whatever.."

Slowly over the days I started to notice a pain in my penis also when flaccid and it felt tense somehow. So a few days later I checked and stimulated my penis to see how it looks in errected mode and I was shocked. Not only did it hurt crazy, it was bent about twenty degrees upwards and the hourglass got stronger, all in all totally deformed, compared to how it looked like four days ago. I searched the web and learned about the term "induratio penis plastica" aka Peyronie's disease.

I cried myself to sleep.

The next day I called up a local urologist but they don't let you in unless your doctor "precribes" a visit to them. So I vent to my doc to get an appointment at the Uro, turns out he was in vacation and the answer machine informed me that if I can't wait I should go to the emergency station of the hospital. I was really scared during these couple of days and every bit of information I've found just increased my horror.. during this time I found the forum and finally people talked to me and the information I have found here calmed me a little, knowing I am not alone with this strange threat.

So when the Uro got back from his vacation they told me the earliest appointment they could get would be i September.
I kept calling everyday to check for opening spots and look here, 13 August I  got in.
Just to get your average "yes. it's Peyronie's, there is nothing you can do. just wait, it may disappear by its own. have a good day."

Still I was glad that at least I was diagnosed by super sonic.

current treatment:

daily:

24mg Vitamin E

0.1mg Biotine

160mg Vitamin C

0.2mg Copper

150mg L-Carnitine

1000mg siliceous earth

10mg Pineapple extract

200mg Omega 3

I got this stuff from the local supermarket as I am still waiting for my internet order of ACL, L-Arganine, DMSO and Q10

physical therapy:

I massage my penis every night with coconut oil and I plan to start the "huyin massage" as teached by TCM.
I do not believe that masturbation increases or reduces damage at this point, but I am new to this after all.

I still look around for the right VED and I tend to a hydropump at this moment, probably the bathmate x40.





I will measure my penis soon these days to see about length or girth changes. I did never really when my penis was healthy. I remember it beeing around 20cm (while errected) when we measured it for fun about two years ago.




so that is it so far.

Forgive me the looooong text but I just really need to document this, to see progression ans/or reduction of this condition and want to share it with everyone who's interested. You guys really helped me a lot already and I thank you from my heart.

dear moderators,
I hope this is the right board for this, since I want to keep posting updates in this thread. If I am wrong here, let me know.
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james1947

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #1 on: August 25, 2014, 07:48:43 AM »

east side swiss

Your post is just fine here.
What is not fine here is your urologist. He maybe a good urologist, but his knowledge regarding Peyronies is close to zero in my opinion.
I want to mention that early treatment of Peyronies gives the best result.
Regarding your treatment, I am not a specialist on all your vitamins/supplements, I know L-Carnitine may help.
I was going on Pentox, low dose Cialis (2.5 mg as you don't have Erectile Dysfunction as I understand) CoQ10 and VED as soon as you can.

James 
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #2 on: August 25, 2014, 08:49:42 AM »

I don't know how or where to get Pentox and/or Xiaflex. Also I am not a fan of medication and tend to react very sensitive. The Uro also told me that all the Peyroie's meds are Humbug.. I get it that this is not the case by reading through the forum and web..

the supplements should arrive this week and I'll order the bathmate VED today. I don't have a strong bend, but it hurts and it is deformed,thick, thin, hourglass..

I can still get hard ad have Sex, but I have to be on top and my errection is not as hard as before and goes away faster..


UPDATE ON PENIS LENGTH:

flaccid   14cm

errected  19.5cm

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james1947

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #3 on: August 25, 2014, 06:10:55 PM »

east side swiss

Your uro is a Humbug, not the medications/supplements.
You must start Pentox, low dose Cialis and CoQ10 in addition to the VED. This is my opinion.
I didn't treat my Peyronies for three years from the onset and I am erected 13 cm long from 18 and lost half of my girth.
The above treatment eliminated 3 hourglasses and softened my calcified plaques.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #4 on: August 27, 2014, 11:36:12 AM »

wednesday aug27, 2014

the ordered hydromax x40 arrived today and I used it gently for the first time. there is not much to report yet, except that is easy to use and you can do it with warm water which is a nice extra.
right after usage the hourglass effect on the left side of the penis seemed to have strongly decreased which  I take as a temporal effect.

I also bought a creme to use afterwards, that is made of "grünöl and binsenkraut" have to google the English names. the creme is called Kelosoft and is used for scar treatment.

I will also do some more research and self testing about the silicone patches I referred to in another topic.


have a good day everyone and never give up!
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UrsusMinor

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #5 on: August 27, 2014, 10:32:21 PM »

Most of the supplements you mention are good for you even if they don't affect your Peyronie's, so they fall into the category of 'No regrets." But your urologist apparently isn't very familiar with the scientific literature.

And, coconut oil has never been the subject of a study for this disease...but I use it, too!

It may seem silly, but if you are going to measure your penis, you have to get systematic about it. "Flaccid" of course means nothing, since a flaccid penis can vary by several centimeters in a matter of a minute.

So you may want to standardize. The most common ways are BPSFL (Bone-Pressed Stretched Flaccid Length) and BPEL (Bone-Pressed Erect Length), which have been used for decades by sexologists.

Here's how you do them: Get a ruler, press it into the flesh at the base of you penis, on the top (dorsal) side.

In the case of stretched length, gently pull it out to full length. This can take some time, and I'm not sure it means much.

In the case of erect length, it's obvious.

The reasons this protocol was settled on is because 1) Weight loss or gain can otherwise affect length, and 2) There is no logical consistent way to measure the penis from underneath.

Girth is more straightforward, but you should measure at more than one point. I have only lost about 0.6 cm (for you Europeans--a quarter inch for Americans) in girth near the base, but I have lost a full 2.5 cm (1 inch) in girth an inch back from my glans, where the curvature is most severe. So a single measurement point may not tell you what is going on across time.

I can't tell how much of my length has been "lost to the curve" and how much has been lost to contracture. On a BPEL basis, I lost about 1.5 inches (3.8 cm). If the curve suddenly vanished tomorrow and it laid down flat, I think I'd still be about 0.75 inches (1.5 cm) shorter than before.

It seems silly to get all lab science about penis measurements, but if you want to track this disease, you have to get consistent about the techniques...even if it makes you laugh sometimes!
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LWillisjr

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #6 on: August 28, 2014, 09:23:38 PM »

east side swiss,

Use this as a guide for measuring yourself. It is important you start making measurements now and keep track of any changes.

http://www.peyroniesforum.net/index.php/topic,4760.0.html
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Les - 10 yrs Peyronies Disease free
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east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #7 on: August 29, 2014, 10:33:55 AM »

thx ursus and willis.

will try my best. gotta get a ruler then i guess..
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UrsusMinor

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #8 on: August 29, 2014, 01:01:31 PM »

Nowadays getting a ruler is the tricky part! You need to have one that isn't sharp (a lot of plastic and metal ones don't qualify), and one where the rulings start right at the beginning of the ruler, with no empty border before the zero mark. It took me quite a bit of looking!

I can't figure out what "grünöl and binsenkraut" are, but "bilsenkraut" is henbane.

I thought henbane was mainly used by witches ("Hexen")!
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james1947

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #9 on: August 29, 2014, 05:05:31 PM »

I bought a simple plastic ruler, cut at the "zero" mark and rounded the sharp "zero" end with sanding paper.
It was 10 minutes of work.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #10 on: August 30, 2014, 10:30:39 AM »

grünöl seems to be called "straight run" (kind of a coinsidence U d'say) or "vacuum gas oil"
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east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #11 on: September 01, 2014, 10:33:37 AM »

monday, september 1th:

I have been using the VED everyday except for sunday.
I start to get comfortable with it by now. I had sex in different ways and noticed less pain overall.
Hourglassing is reduced everytime after VED.
still pain when errected but less harsh.

enzyme supplements arrive tomorrow.

sex seems to be helpfull in my case,  reduces pain and tension in penis.

have a good day everyone:::
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east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #12 on: September 04, 2014, 07:22:50 PM »

thursday, september 4th:

so I complete my diet since three days with

650mg acetyl L-carnitine

750mg L-Arginine

100-200mg CoQ-10

I used DMSO for the first time today in combination with coconutoil.. I wonder if it d be possible to use L-arginine with DMSO. anyone has experience?

my condition seems stabile for now. Still able to "perform", sometimes with bend, sometimes not too much. the hourglass remains though. And the pain and the supersensitivity..

I also observe that sex is no problem, is even soothing, but masturbation on the other end seems to worsen the pain symptoms..

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james1947

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #13 on: September 06, 2014, 06:37:42 PM »

east side swiss

From your posts I understand that you can see some positive outcome from your treatment, wish you to progress further.
I was adding Pentox, it helped me and many others.

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

UrsusMinor

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #14 on: September 07, 2014, 03:16:53 AM »

Agree with James that Pentox seems like a good idea...if you can hack it.

Feel free to go to higher CoQ10 dosages. I take 400 mg/day of Ubiquinol, which is roughly the equivalent of 650 mg of CoQ10.

Some of us would probably recommend citrulline malate over arginine. Weirdly enough, citrulline malate results in higher blood levels of arginine than taking arginine does. (See my note here: http://www.peyroniesforum.net/index.php/topic,5299.msg59386.html#msg59386 )

I recommend that citrulline or arginine be cycled (a few days on, a few days off), as the body downregulates its response to both of them quite rapidly. Also, 750 mg isn't much arginine. People who are serious about arginine measure it in grams, not mg.
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east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #15 on: September 11, 2014, 10:28:18 AM »

hi guys,
so I doubled the dose on arginin and ALC, thing is, it is kind of expensive :-/

appreciate your advice and support, thanks so much.

for now it seems like the progress of the symptoms have stopped, also it feels like VED really helps. all in all it is difficult to get a hold of it and judge after such a short period.

bent is still there, also hourglass thing, but it seems better and the pain lessens more and more.
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east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #16 on: October 21, 2014, 03:15:29 AM »

update: so my condition stabilized and i have had no pain since i started VED and supplements
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james1947

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #17 on: October 23, 2014, 12:21:46 AM »

Good to hear Swiss

What about bend and hourglass?

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

east side swiss

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #18 on: October 24, 2014, 03:53:26 AM »

hi james,

bend and hourglass are reduced. I feel it is mainly because of the VED. not sure though. penis is still not as stiff as before when errected but I feel like I am getting there.

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james1947

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #19 on: October 24, 2014, 05:24:12 AM »

Hi Swiss

I had my hourglasses disappeared, mainly by using VED.
Unfortunately, it not helped (together with the other treatment elements) to reduce the bend.
Wish you continue with the improvements

James
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Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe Erectile Dysfunction.
Lost 2" length and a lot of girth. Late start, still VED, Cialis & Pentox helped. Prostate surgery 2014.
Got amazing support on the forum

skunkworks

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Re: starting my protocoll here. (food suplements, coconut oil, massage etc)
« Reply #20 on: October 24, 2014, 10:38:05 PM »

Man I've got to bust out the VED again. I've had huge improvements in basically all areas from traction, but there is still some minimal hourglassing.
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