Just diagnosed, very sad. hope to find help here

[justo]

Hi Everyone. I ran across this forum and have been really pouring over everything. This whole thing is really depressing for me and I hope i don't sound like an idiot but...well...its sad.
I have a lump in the shaft of my penis and it seems to get smaller then bigger the smaller etc. I have a dent in the upper part of my penis and I am noticing that perhaps i am getting an hour glass shape happening. What a total drag. I never thought this kind of thing would happen to me.

So i am using potaba, Vitamin e and Cialis. What my urologist recommended. I am based in Germany at the moment and it was a German Doctor. He said basically ...there is nothing i can do. No cure , take this stuff it MIGHT help. But just get used to it because its incurable. Some people get cured spontaneously for some reason but no one knows why.

So ...here i am...dealing with it. I hope I can talk to some of the experienced guys here and see what can be done. Soon I will run out of medicine and i have no health insurance or money to pay for more cialis and the rest. I have read about the heating treatments and may start experimenting with that.
Greetings to all and thank you for this forum. very much
J

[LWillisjr]

Sounds like you are getting the standard response. Many urologists don't specialize  in treating Peyronies Disease. There is a lot of information on this site to get started, which may be a little overwhelming. Read the FAQs on VEDs and traction devices for starters.

[justo]

Thank you for the kind response. I should add probably that i am 48.
I was curious about the traction stuff. Do you think that helps with hour glass situation?
thank you in advanced.
J

[fubar]

Justo

Sorry this has happened to you.Yes there is hope and life is not over.There is alot of information here to go over.Take your time dont panic.Feel free to ask anyone anything we all know how it feels to have tbis suddenly and the weight of it all.

Pentox,  ubiquinol and cialis seem to work best.Then there is the Ved and traction therapies you might be interested in.In my opion these things do help.Will they cure you? Maybe not but tbey will give you a fighting chance.

You mentioned money is tight for you at the moment.There are online pharmacies that sell cialis pretty cheap.

Welcome to the forum you are not alone.


Fubar

[justo]

Thank you kindly Fubar.

You think these are reliable sources and the Cialis is real?  

[Skjaldborg]

I got this at age 29. I thought my life was over due to hourglass deformity and significant pain during erection. I got on pentoxyfylline (Trental) and the pain went away in a matter of weeks. My wife got pregnant with our first baby (meaning everything still works down there) and over the last 2 years the scar tissue has shrunk to almost nothing. The hourglass deformity is still there during erection but it has improved. The wife says she wouldn't know something was wrong down there unless I pointed it out. Take this as an opportunity to get yourself stronger and in better health; it's free after all. Pentox is cheap too and available online. This is not the end. Hang in there.

Best,

Skjaldborg

[justo]

I got this at age 29. I thought my life was over due to hourglass deformity and significant pain during erection. I got on pentoxyfylline (Trental) and the pain went away in a matter of weeks. My wife got pregnant with our first baby (meaning everything still works down there) and over the last 2 years the scar tissue has shrunk to almost nothing. The hourglass deformity is still there during erection but it has improved. The wife says she wouldn't know something was wrong down there unless I pointed it out. Take this as an opportunity to get yourself stronger and in better health; it's free after all. Pentox is cheap too and available online. This is not the end. Hang in there.

Best,

Skjaldborg

Wow thanks Skjaldborg. That is very encouraging. I am very grateful for the reply. This whole thing is destroying my mind. So this is very nice!
You guys have experience with meds!! Thats great!! Should i stop the Potaba? I am not sure its doing anything and its not cheap here in Europe. Cialis is great for keeping the erections going. I was so depressed when i discovered the lumps that i had no sex drive at ALL.

But does it actually do anything outside of that?
J

[Skjaldborg]

I have not taken Cialis, but it is supposed to slow down the TGF-beta process, which causes the formation of scar tissue. It also helps with erections, obviously, and can be beneficial if you are "psyching" yourself out of being able to have an erection. A number of people on the forum use low-dose Cialis.

Pentox tends to shrink scar tissue but it is not a cure. It did work reasonable well for me though. Not 100% but I can't complain.

The mental aspect is the toughest part of this disease. Eating right and exercising can have a big boost on mood. You can't control Peyronie's but you can control how far you run and how many push ups you can do.

-Skjaldborg

[james1947]

Justo
From what I understand the best combination that may help is Pentox, L-Arginine and Cialis (or Viagra instead of Cialis). You will find a lot of information on the forum about them.
I begin Pentox one month ago (2*400mg daily with food and have no any side effects), too short time to have effect on Peyronie's but my flaccid state is more full. In mean time, helped me with small blue veins on my face and feet. They almost disappear. I am in the Far East and Pentox here is $1.2 per pill, that's very expensive, I don't have health insurance here.
Be aware with the Pentox, is a mild immune system suppressor, so if you get sick (flue fro example) stop until healthy again.
I find https://www.riverpharmacy.ca/drug/trental on the forum and is much cheaper.
I am also taking daily 12.5mg Viagra (cutting the 100mg in 8 pcs), I have strong side effects with Cialis.
I am also proposing you to use VED, it helped many on the forum and helping me also.
Don't give up as people told you already. I am proposing you to concentrate also in reading the forum have huge information regarding treatments.
James

[Luciano]

Hey justo.
As you are based in germany, there are 3 advices I can give you:
First:
There is 1 great Peyronies Disease specialist  in hamburg, he also participates in the xiaflex trials etc... etc...
his name is: Dr. Hartmut Porst

Here is his homepage ( the part about Peyronies Disease) you will find the contact there also.
http://porst-hamburg.de/spezielle-andrologie/peniserkrankungen/induratio-penis-plastica.html

He says there, that only very few of his 5000 Peyronies patients needed surgery.
And he also explains that he treats Peyronies Disease with:
Pentox and Cialis or with Xiaflex (but I think he is not recruiting any more for the study).
He also recomends  Andropenis (which is THE traction device used in Europe)

So before spending money on various docs, he would be The first choice. (Concerning Peyronies Disease, he is in Germany, what "Levine" is in the USA - And in his publications he also quotes the pentox studies by Tom Lue)

Second: If you are looking for cialis in germany, DO NOT USE AMERICAN SHOPS or shops outside of the EU. The letters, parcels will be blocked by german customs. Try this forum: http://menshelp.cc/viewtopic.php?f=12&t=110
The people there explain to you where and how to order within the european union, and also discuss the quality of the different shops and of the different generic products. And also they update regularly on the ones that make it through german customs etc.... (its in german of course)

As for pentox i did not find any online pharmacies that would sell you trental online inside the EU. Same here, ordering online from outside the EU will get the parcel through customs and you have a 99% chance it will be confiscated and you will be fined. But as stated by james it is not very expensive. AND european docs are not as opposed to it like american docs are. So I think seeing a general doc in germany, showing him the porst homepage, explaining him the situation, he will not have any problems prescribing it to you (Just dont tell him you plan to take 3 a day! - The majority thinks that 2 a day is ok). At least its worth a try. It will cost you around €14 for 50 tablets in pharmacy.

Third: As you say you do not have any sex-drive, get your testosterone levels tested. Doctors say, that Peyronies Disease patients often have low bio available testosterone levels. Allthough getting them to normal level will not cure your Peyronies Disease, it can help with your sex-drive. (As money is an issue, what I did and it worked fine was: i go to a general doc, and have him write me a prescription for blood test for sugar, telling him I also need testosterone, bio available testosterone, SHBG and PSA because i dont want to go to the laborytory twice. Then i go and see the urologist with the results (if they are low). The general doc when he only writes a prescription is usually much cheaper than the urologist. And this way you dont have to pay the urologist twice)

Hope that helps.

Luc

[justo]

wow guys thank you so much. The support is really very valuable to me and I am grateful. I will look into all these things and especially the doctor in Hamburg. Thats a great connection!

One question....is it acetyl l arginine I should take or regular l arginine?

Very kind all of you
J

[justo]

HI All! Just wondering ...is it acetyl l arginine i should take or just regular L arginine?
As of today...potaba has run out. Still 14 cialis left. I will be cutting them last longer. But does this reduce the efficiency?

I have no money to replace the potaba. But maybe these options? I tea potaba is sketchy at best anyway with results

:-(

[james1947]

Justo
As I understand from the forum is L-Arginine. I am not taking yet, in my age (64) prefere to do things gradually
Regarding replacing Potaba, as you say it is not helping you, replace it with Pentox.
What is the Cialis dosage you are taking? I read on the forum that some people takes 2.5mg or 5mg every other day.
Luciano stated that the Pentox price is Euro 14 per 50 pills. If you begin with two daily, it makes almost one month.
James

[justo]

jeez my spell check really screwed me on that last post :-D

Anyway thank you bro. I will look into pentox. Sounds like a good alternative and A  loooooot less expensive. I think these doctors love top prescribe expensive stuff!
ufffff

Thanks again
J

[justo]

Hi guys...i guess no response. Just trying again. It seems i cannot get L arginine in Germany??? This is strange!!

Also...any ideas how i can get Pentox here? Is it through Doctor only?
Thx in advanced
J

[james1947]

I am not in Germany, just google it and find:
http://safedrugstock.com/bestellung-trental-online-de.html/?a=46783
It seems expensive compared to the US. More like here in the Far East. Try some more googleing, maybe you will find more.
James

[Luciano]

Hi guys...i guess no response. Just trying again. It seems i cannot get L arginine in Germany??? This is strange!!

Also...any ideas how i can get Pentox here? Is it through Doctor only?
Thx in advanced
J

In germany you will get L-Arginine over the internet or in body building shops. Body-builders take up to 5mg just before their workout. That is far to much for Peyronies Disease 1 to 2 mg per day is largely enough.
As to pentox its prescription only. You will need a doctor. but it can be a general practitian.
As I wrote before on this page. If you get a prescription it will be much cheaper in pharmacy than over the net.
Trental (=Pentox) is around €15 for 50 pills if you buy it in pharmacy without medical insurance.

Luc

[justo]

ahaaa great guys! Thank you so much!
J

[Buckeye]

Hi Luciano,

Are the dosage amounts in your post correct for the L'arginine? I'm not home to check on mine but I believe the tablets I take are 1000mg (1gm) and I take them twice a day per other recommendations on the forum.

Buckeye  

[Luciano]

Luciano
Thanks for clarifying the daily L-Arginine dosage
James

Wait !!! that is wrong my mistake...
its I think 1 gram, not miligram... I am all confused now.. you better check in the oral treatment section...
all I remember is not 5+ but 1 to 2... not sure if it is gram or miligram...
But its easy.. if they come in 1000 mg capsules its gram.

[james1947]

Luciano
Thanks, I will check out. Regarding the timing, should be taken morning, noon or evening?
James

[Luciano]

I take 1 in the morning.. i read some taking 2 take one morning one evening..
Actually I dont know what is the best.

[LauRenT]

In my case i take 2 grams of L-arginine with 150mg of Pycnogenol 1 hour before sleep. I don't know if it's the best or not, but i'm happy with that.

[justo]

Does cialis eliminate the need for L arginine? Are they kind of serving the same purpose?

[Skjaldborg]

L-Arginine is an amino acid that plays a role in synthesizing (creating) nitric oxide, a chemical that is important in the erectile process. L-Arginine is produced by the body and supplementation is not always necessary.

Cialis inhibits (stops) PDE5, an enzyme that breaks down cGMP, a chemical which is important in the erectile process. This is a different function than L-Arginine.

While these two do serve the purpose of encouraging good erectile function, they do it in very different ways.

-Skjaldborg

[justo]

I see...but if i take cialis there is no point in taking l arginine because they are both help with erectile function and not reducing the lumps. Is this correct?
What should I take for reducing the lump size?

Cialis is doing a great job with erections and I have little side effects. Or none.

So is Potaba the good thing for reducing the lump?

Thx for the info bro!
J

[james1947]

Pentox is softening scar tissues and reducing lumps.
James

[justo]

my uro here in germany just told me Potaba is more effective then pentox. Just passing the info along. He says he was talking to another professor out here that has been doing more and more research.
I don't know....:-(

[james1947]

Justo
Try reading on the forum as much as you can regarding Pentox and Potaba before you are deciding what you want to do.
I do believe from my own experience and from what I read on the forum that the information on the forum is much more than most of the uro's knowledge.
My own opinion.
James  

[justo]

Justo
Try reading on the forum as much as you can regarding Pentox and Potaba before you are deciding what you want to do.
I do believe from my own experience and from what I read on the forum that the information on the forum is much more than most of the uro's knowledge.
My own opinion.
James

Thank you James!! Will do!
J

[justo]

sheez...this thing is getting bigger and its starting to hurt. My deformity is not that bad though...it looks like dents. i hope it doesnt turn into hour glass deformity. What a drag.

I am taking the cialis and potaba religiously. but nothing. Warm baths seem to help. Makes the pain subside ...but...What a drag this whole thing.

[james1947]

Don't give up Justo.
It's like you are still in the acute stage of the Peyronie's. My private opinion is that if you was not doing nothing it was worst.
What about VED? I think it may help also.
Myself I did not made nothing in the acute stage and it was a BIG BIG mistake.
I am not taking Potaba, taking Pentox and Viagra instead if Ciallis, Ciallis make me too much side effects.
James

[justo]

thanks bro. It seems many guys here prefer pentox. I wonder. Potaba is $$$$$$$$$$$ also wow

[Noway]

Justo your lucky the first urologist I seen grab my balls really hard and said there is nothing wrong with you I almost choked her. I was I think about 17 or 18 I went to see her about my problems and I had no clue about this and I thought that it was normal. All she said was at your age this cant  be happening looked at me weird and so on then she told me to take off my pants and all she did was grab my balls real hard and push below them. Im like what are you doing? Shes like I got to check. I never went to see that bitch again.

[justo]

Hi Guys ....well ...just a little note here. I notice that when i DONT massage or masturbate...the indentation gets worse. It seem that the more the blood is in the penis the better it is for the deformity. It may help to lessen it. Could it be that the tissues in the penis are "moldable" to a certain degree?
I am still taking Potaba and cialis. 2.5 mg cialis.

Still doing the hot baths, A LOT of green tea, and peppermint tea. Water as I can.
stance this whole thing. The Tumor or falsification goes up and down...one day bigger the next smaller...ufff.

[justo]

Hi Guys ....well ...just a little note here. I notice that when i DONT massage or masturbate...the indentation gets worse. It seem that the more the blood is in the penis the better it is for the deformity. It may help to lessen it. Could it be that the tissues in the penis are "moldable" to a certain degree?
I am still taking Potaba and cialis. 2.5 mg cialis.

Still doing the hot baths, A LOT of green tea, and peppermint tea. Water as I can.
stance this whole thing. The Tumor or falsification goes up and down...one day bigger the next smaller...ufff.

Well....nothing is changing much...the shape gets better and worse. Who knows what to do.

[james1947]

justo
Try to add VED to your treatment. VED is inducing blood flow to the penis. It helped many on the forum.
L-Arginine addition to the therapy helped also many.
Also don't expect that things will improve fast, this kind of treatment is a marathon, not sprint.
James  

[justo]

justo
Try to add VED to your treatment. VED is inducing blood flow to the penis. It helped many on the forum.
L-Arginine addition to the therapy helped also many.
Also don't expect that things will improve fast, this kind of treatment is a marathon, not sprint.
James

Thank you for the encouragment James. highly appreciated. I thought it was Acetyl L arginine that I should take?  

[james1947]

As I understand is L-Arginine at 1000mg daily.
Body builders are taking 5000mg daily and even more. I want to add also L-Arginine to my treatment (VED, 2*400mg Trental/Pentox, approximately 17mg Viagra, I am not tolerating Cialis) but I don't succeed to find it here in the Far East. I will have to ask my sister in the US to buy and send to me as she had done with the Pentox. The Pentox here is 10 time more expensive than at River Pharmacy, at $1.5 per pill.
James

[justo]

As I understand is L-Arginine at 1000mg daily.
Body builders are taking 5000mg daily and even more. I want to add also L-Arginine to my treatment (VED, 2*400mg Trental/Pentox, approximately 17mg Viagra, I am not tolerating Cialis) but I don't succeed to find it here in the Far East. I will have to ask my sister in the US to buy and send to me as she had done with the Pentox. The Pentox here is 10 time more expensive than at River Pharmacy, at $1.5 per pill.
James

Wow ...its such a drag how greed interferes with people getting better:-((((

[goodluck]

Thank you for the encouragment James. highly appreciated. I thought it was Acetyl L arginine that I should take?
[/quote]

I think you mean acetyl L carnitine or ALC.

[james1947]

Some using acetyl L carnitine but most using L-Arginine

James

[justo]

well friends...i was taking potaba at the high dosage reccomended and i starting having chest pains. It says that is what one of the side effects can be. I stopped right away. Its better now....but...what t do.

Also i notice when i dont massage or masturbate...the dent i have going becomes more apparent and when i do the massage it gets less. Does this sound right to you guys?

I have not tried the pump...im a bit scared of that. Afriad it might make it worse.
:-(

[justo]

Hi folks ...today i started with L arginine. In place of Potaba. Lets hope it works!  

[justo]

um....does anyone know why rings have appeared under the skin my penis? It looks like veins but it goes around the penis....2 rings! Scary!
please advise

[justo]

Folks wow...I am so worried....Feels like i am loosing sensation...I stopped the potaba and the deformity got worse in just a few days. Im back on it and L arginine. And cialis. Am i killing my body?

[james1947]

justo

You have written that the Potaba made you chest pain, so I don't think is a good idea to begin with it again.

Maybe better to replace the Potaba with Pentox.
I think also that you have to give more time for the medications to see an effect.

James  

[justo]

have you ever experienced loss of sensation? It seems my penis is cold also. Could it be that the circulation is being cut off?  

[james1947]

Yes, I lost much sensation because of the Peyronie's. Can't masturbate for long time.
Regarding cold penis, I have sometimes, much much less after I begin Pentox and VED.
Your penis may be cold because the blood circulation is much less than before. If you can have erection, the circulation is not cut off.

I am proposing you to begin VED, it will force blood circulation to the penis. And also Pentox.

You have to see a doctor regarding your penis if all the time is cold!!!

James

[justo]

thank you for your time james. Very much appreciated.