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kovasis

Hello @All
Iam new to this Forum and also to this damn desease (i suppose) because all Dr.'s i went to  are not sure even the so called specialists.
It is very weird to read here that most of the people faces the same respond from their Urogolist as i did here in Germany like "wait and see" - "Try to go on - we only should do something if intercourse is not possibe anymore" and so on.

The Sory so far:
Iam 46 now and in June this year i noticed a kind of knob at the right shaft (right there were it comes out of the body - at the bottom) - from that knob there was a slight palpabel cord realy short in lenght which seemed to increased to the left side of the shaft.

No bend no curve or something (expect that what i had my whole live - (a dorsal curve in direction to my belly))

First Urologist said maybe a venous Thrombose and gives me a Heparin salve .
Because i was not convinced i went to another Urogolist who supposed it could be a lymphangities --> Doxyciclin for three weeks.

Nothing changed and the litte cord was incresed again a bit to the left direction of my shaft (at that time about 1/3 on the way).

That was in July this year  and this was the first time i heard from pyronies desease - because the Antibiotica did not work the Second Urogolist supposed it could be Peyronies Disease (they call it IPP here).
His advice to deal with this ? - Yes - wait and see...

I was shocked after i read about it and spent many hours with investigation - all seemed to  end up in Horror with that Desease so i consult a third Urogolist who felt the knob and said : "i dont know what this could be" which makes me laugh cause this was the first time one of those Dr.s said the truth.

Ok he send me to have an MRT which i had another two weeks later .

They discovered a small scarve at the right shaft exactly where i could feel the knob - but nothing else.
The scarve could be a result of an accident i had in my teens which broke my penis on that side...
This i immediatly rmembered when they showed me the MRT Picture.

So went back to the Third Uro who told me it is not Peyronies Disease its just that scarve.
Ok I said but what is about that cord and the knob at all? why does it develope since a scarve should not change anyway?
He doesnt really answered that and only pointed out this could be a thickened vain or something...

Ok I went to the Fourth Uro who also is educated at andrologie and called himself an Peyronies Disease Specialist.
He palpated a bit (no Sono or something) and said well it could be a Peyronies Disease but i should dont worry about it - just wait and see and try to have as many sex as i could ...
I asked him if it is not necessary to treat this desease with kind of medies suppost to help in that situation - No

To not get anyone bored by reading this - i jump to the present because my other consultations i had was pretty similar to the others.

The Cord is growed and has finally reached the left side of my shaft so it feels like a buckle now - the knob itself is a bit thicker now and i often has pain when the penis is not erected.

The Cord also becomes thicker than bevore and i discovered another small cord on the dorsal left side of my penis.

My next Try to finaly have a diagnose (even if i had no doubt about what it is) is an universyty Clinic where i have a appointment next Month.

I had convinced one of the URO's to describe me Potaba (three Weeks ago) and cialis 5mg (one Month ago)
I also use L-Carnitin (1g) and L-Arginin (3g) per day.

I'am completly down since a couple of weeks because no one really helps here and Iam afraid that it maybe is cancer instead of Peyronies Disease.
And if not Peyronies Disease is almost like Cancer to me because i have a frequently high and active sex life - just a couple of Month in a new relationship which iam afraid to loose because of Peyronies Disease.
Acrually there seemed to be a slight curve at the upper dorsal side of my penis (that was definitly  not always there ) but still no Pain during Sex - ED Problems -> Yes But i faced them also prior the Peyronies Disease - work fine with Sildenafil (50 mg) .

Doese anyone have a similar formation of that sort i described above?
What else can i do to beat against this desease ?
I dont believe it but is it possible that this is something close to Peyronies Disease but actually not the same?

Thank you so far - writing down things already help a bit with that Psychological Drama this desease  also causes
and here in Germany the Forum is kind of Dead - no one Really shares Information (not at the present at least)  like you guys do here i really apreciate that .

many Regards
kovasis





Age 51
First onset of Pyronnies  June 2016
Indurations under the glans and at the base.
4 Years Stable
Daily use of 5 mg Cialis and 300 mg Pentox

LWillisjr

kovasis,
Welcome to the forum. Hopefully anyone with similar experience will post here. From what you are explaining so far I am not so sure that this is Peyronies disease or some inflammation of some sort. It is disappointing some of the responses we get from doctors and real understanding of our problem.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Jonbinspain

I'd agree with L. Willis. It doesn't sound like Peyronies.

I can only suggest that you try to find a Urologist who can give you a definitive diagnosis.

kovasis

@Jonbinspain, LWillisjr

Thank you for Your Respond.

Since i consider the Opinion of most people who are in Contact here with each other  and frequently wrote Posts related to their own Situation in comparison to the others - i really think that you guys are kind of specialists.

Taking care of each others problems and sharing the expierence in treatment of this desease (even if every case seemed to be different concerning the improvemnet and positive results) is as important as to find a real specialist who really cares and has the abillity to help (so far as help could be provided ).

As i mentioned hopefully the appointment next Month will give me a conclusion of  it -  if this is  Peyronies Disease or not.
I also have another MRT next Month (which i had forced the URO on my last consultation to prescribe to me) to see if there is any Progression concerning that scarve they had detected previously.

By the Way - Do you have any Idea what else this could be?
To me all indicators of Peyronies Disease are given

- An Old Scarve that maybe developed to increase by some sort of Micro violation issue during Sex (would match the timeline because i had those Situation in the beginning of this Year (january/February)).
- The Apearance of a Knob at the location where the scarve supposed to be
- A Corde / Rope that Developed fast in lenght and bigness (coveres the whole base from Right to left dorsal at the shaft of the penis and has the consistence of gristle like elastic cartilage with little grains on it (i can feel them when i touch the surface of the rope)
- Another little rope (that slides from left and right by touching it but is not moveable together with the Skin) hurts slighly when get touched but seemd to have another consistence than the rope at the shaft (maybe a venous Thrombose?)
- infalmmation feeling (slight pain) in not erceted penis and slight pain during sex.

Only thing is missing by now is a dent / curve - even if i noticed a slight dieference between my already curved penis (called congenital right?) - But that maybe occure in another couple of Days / Weeks...

I read many Posts here who gives me a picture of what need to be done to really dignosting the Desease.
So far as i understand it they should take a Sonographie btw. at least a kind of Ultrasound doppler  right?

So i guess this time i need to force them to do this ...

Since this seemed to be a rare and difficult to traet Desaese it may also difficult to even diagnose it?

What indicators have to be given (from your experienced  view of this desease) to be more sure if it is Peyronies Disease or not ?

Even the last "Expert - URO" i saw said that he dont believe this is Peyronies Disease (but only palpated for Diagnosis and saw the MRT Report).

I aksed him what esle could it be - since all Symptoms seemd to point to Peyronies Disease.
He thinks it could be a progression of the Old scarve - thus wanted to see me in 6 Weeks and compare the MRT Reports (I will get another one (MRT) prior to my appointment with him next Month).

I can see no difference in prozessing of an old scarve and Peyronies Disease performing fibrosis with feeling of inflammation and growing fast - maybe i'am a case where the developement of the Desease is very fast?

Of course cancer is also not impossible - even if they say that it is very rare and in my case not assumed...

Sorry for my - i guess kind of weird english - its about 10 Years ago when i was working for a American Company here in Germany so its a bit rusty know.

I look forward to hear from you - meanwhile i try to read more in this Forum and maybe have the opportunity to help  others with questions  that i can give an answer to ...










Age 51
First onset of Pyronnies  June 2016
Indurations under the glans and at the base.
4 Years Stable
Daily use of 5 mg Cialis and 300 mg Pentox

NeoV

That is very alarming and I'm sorry about your symptoms.
Now would be a good time to research everything here on the forums and doing everything possible to improve your overall penile and vascular health. There may not be an easy answer but we're all here to help you figure it out. Even without a bend, it certainly could be Peyronie's.

The issue is that if you aren't bending, how can your urologist operate? It's messy business and with no curve he may be hesitant to tell you you have "Peyronie's."

If you do have any scar tissue on your penis at all, that is Peyronie's if you ask me, and it should be treated as such.

kovasis

@NeoV
Thank You for your Reply.
I already  started treating it the Way that it should be treated - at least to avoid more damage or an worst outcome (if this is possible) with many advices i read on this Forum and elsewhere.


I have also read that the over all health of the Body is important - therefore  i had  forced my GP to do many Blood tests and check if iam Diabetic of some kind (Diabetic 1 or 2).

- checked PSA, Testosteron and all other urologostic related blood investigations
- Checked the Blood for cancer markers
- checked the Blood Presure by a 24 Hours test.
- had an intestinal and  stomach inspection.

All this investigations does not have showed any kind of problem at least no big problem (Bloodpreasure is sometimes high).

Only wierd things i can discover (looking back at the past 12 Month for example ) are that my right testicel is damaged - kind of atrophia (of course as usually - no one can explain why)
and at the begin of this Year (around March) i lost more than 6 Kilo weight in a couple of weeks without any obvisously reason.

There was and is private stress and stress at my business as well so i already developed a Depression which now is even more present.

because when i look at all the Stories here they (almost all) have a common thing - the Peyronies Disease seemed not to be able to cure in any way and each case is different from the other.

This is really pretty good stuff for psychothriller and Drama - it's like a nighmare that not began when you are sleeping (if you able to get some) but immediatly starts when you are awake.

This is why i think this Forum is very important and i'am glad to be here.

Thank you
Age 51
First onset of Pyronnies  June 2016
Indurations under the glans and at the base.
4 Years Stable
Daily use of 5 mg Cialis and 300 mg Pentox

kovasis

So here is my update .
Saw Specialist at Urologie Clinic --> Confirmed PDS by Sonographie --> No of course nothing they can do about it...

gave me threem Options - it may be stable for the next 40 Years , it may progress at any time , it may disappear / Remissioning on its own.

No other Plaques so far - but i doubt if he really look close enough - anyway all in all besides my "own" traetment i have to hope that nothing will get worse.

I have to say that many things I've read on this Forum at first makes me kind of depressiv - but there also many things that provide kind of hope because at least one is not that helpless than  i thought at the beginning .

I will order an VED (prescribed from the Andrologist) and will also may compare it to a one that I will look for with the help from Old Man.

I will also add Ubiquinol (Q10) to my regiment and yes still consider the possibillity to have an Implant if evrything fails.

Thank you guys - this is not a really happy place to be - but kind of bearable since one can provide each others opinions and experience which gives me the feeling of mnot beeing alone with this crap...

mG
Kovasis
Age 51
First onset of Pyronnies  June 2016
Indurations under the glans and at the base.
4 Years Stable
Daily use of 5 mg Cialis and 300 mg Pentox