Newly diagnosed - well this sucks!

[BravoMike]

Hi,

So here's what I'm doing about it:

Vit E (pure d-Alpha Tocopherol whatever that means) - 400IU 2x daily
Upiquinol (Jarrow - QH-absorb whatever that means) 100mg 2x daily
Argenine (Jarrow - phameceutical grade l-Argenine) 1000mg 2x daily
I have also bought a SomaCorrect 3 cylinder VED device and have started following their Peyronies treatment plan.

That's the positive action I'm taking but I am also a bit down about it. As a single man in his mid 50s - it's hard to imagine dating again until I've dealt with this psychologically.

I do have some questions :

1. Are the supplements above and the ved I have started on the right / best thing I can do right now? I would add Pentox to this list but it doesn't seem to be available in the UK.

2. I was under the impression that the acute phase lasted around 18 months (ie I'm already 18 months in so this is as bad as it's going to get) but it seems to be getting worse. Is there ever a point at which it stabilises to the extent that you can say that's it - your new dick - get used to it and live with it! Or is this ongoing with acute phases and further deformity occurring randomly throughout the rest of your life?

3. The testing, ultrasound, injections and other options I read about US urologists providing on these forums seem non existent in the UK. Does anyone know if this is the case or have I just got a badly informed GP and an ignorant urologist?

That's about it really - my Peronies seems to be progressing even 18 months after the initial symptoms which is more than a little upsetting but I'm very grateful for the information provided by the members of this forum and to be able to post here.

Thank you.

note: for anyone else from the uk reading this - 3 cylinder somacorrect ved bought from imedicare dot co dot uk

[james1947]

Shortly:
* The doctors are after money not after treating you
* Good you are starting VED, be careful
* Low dose Cialis will help
* Pentox is a must, hope some members from the UK will tell you how to get it there
* Vit E will not make you damage but will not help also
* 18 months Acute stage is a legend
*

As a single man in his mid 50s - it's hard to imagine dating again until I've dealt with this psychologically.

WRONG!!! There are many nice ladies out there that are interested in other things also, not just your dick

James

[kovasis]

@BravoMike
Welcome to this Board - unfortunately i'am also in about a couple of days now.
You can Read about my case at the introduce yourself  Board here.

I'am also concerned about the acute and the stable phase.

Since nothing about this F... Desease seemed to be for sure (except the fact that there isnt anything for sure) this is also a point where you can read contradiction opinions.

A professor (Prof.Dr.Porst) here in germany said there is no progression after it comes to the stable phase - many others disagree and so on.

It's the same about the Treatment - in Germany they (usually) prescribe Potaba in the US pentox (called Trental in germany)  seemed to be the preferred medicine - But as every case is individual there is no garantee if this succeed in any way - besides both medies only fight the Symptoms  and do not heal -  (Trental also reduces the pain if you have pain)

I can add many more examples but this would be useless and not helpful yet.

The Message is (and if you may read about the Desease and the Informations about it in this Forum or elsewhere you already know) there are some helpful treatments that could be done - there is actually no really Scientific / medicine way to heal this crap  and most of the Dr's even dont care about it -  WELCOME to 21th....

What is your condition at this time (Plaques / bent / Curves)  ?

@ james1947

"* 18 months Acute stage is a legend"

Does that mean you agree in the Theory that the progression never stops?
I would really like to know who spreads this information and what is the Scientific background for that Theory - since every - literaly every case (they say ) is different and this Desease is not fully understand nowadays - so who can say for sure whow long it lasts or if there is a certain point when it stops?

mG
Kovasis

[BravoMike]

Thanks james1947 & kovasis for your comments.

I share kovasis's concern on the acute phase and can't really see any answers here or elsewhere so would be really grateful for any info people have from their experience.

The official line is 18 months acute then stable. James calls this a myth. Anyone have any details - I mean is this really ongoing or is there a pattern - eg acute phase can last 3 years (not 18 months) or it can come back and get worse at any time, forever.

Kovasis - I first felt shooting pains about 18 months ago, not during arousal just walking around - from inner thigh to tip of penis - and ignored them.

A few months later I noticed the the last inch seemed narrower than before and again dismissed it as "just aging". A couple of months later I googled around and that was the first I heard of Peyronies Disease. By this time I the last inch was significantly narrower than the shaft and I had about a 20% upwards tilt in the same place.

No recollection of any trauma (haven't been sexually active for a couple of years) - it just seems to have happened.

Went to doctor, referred to urologist, diagnosis Peyronies Disease - recommendation vit E and comeback in six months when it's worse.

Currently have a tapered last inch and 45 degree up tilt - no real pain either flaccid or erect - but have a sort of conastant ache - like I am now permanently aware of my penis / feel it all the time. I don't remember having this "awareness" before - only felt it when using it.

According to urologist my plaque was too flexible to do anything about and frankly I couldn't feel it at all. I can now however - a hardening strip running up the top of my penis from base to head.

Compared to many I don't seem to have it too bad - at the moment. But it does seem to be progressing and who knows how long the acute phase will continue and where I'll end up.

The psychological impact of this is important for me - never been hugely confident and have been lucky enough not to have had any serious health issues before. My doctor is dismissive and the urologist was an in and out in 10 minutes consultation.

OK this isn't life threatening - but it is life changing and the lack of awareness, investment, knowledge is mind boggling. I can't help thinking that if this was a woman's sexual health issue I would have been scanned, blood tested, educated and counselled already.

All the best - mike

[kovasis]

@BravoMike
This sounds very familiar to me ( Your Experience with the Dr's).

The main advice at this point is to find anther URO and to be sure he is a specialist on Peyronies Disease.

The Problem is that this is  time intensive and sometimes even the so called specialists leave you with no satisfying explanations or even a proper investigation.

Most of the Part is up to you - like i mentioned in another Post of mine - it is really important to check the overall Health of your Body .

There are really good examples for what Blood tests have to be checked and other advices concerning that point here in this Forum and this can and should  even be done by your GP.

I have had done most of them and sometimes had to force my GP or the URO to perform  them - dismissive or not THEY HAVE TO DO THIS it is your Body and your Health.

You mentioned that you were out in about 10 Minutes - but how does the URO diagnose you to have Peyronies Disease?
That hardened String you describe (on my opinion) could also be a kind of thrombosed vessel ?

Only thing that seemed to certainly match is the curve about 45 degree and that kind of deforming you mentioned - this seemd to be a kind of visit card from Peyronies Disease.
But again is this really diagnosed to be Peyronies Disease?

I have seen about 5 URO's (two of them so called specialists) and no one could tell me for sure what it is - besides i'am currently see not really mentionable curve ( expect that one i've always had) .

Concerning the psychological impact i think this is why your attention / awareness is on that high level - I also couldnt help to palplate at the Plaque or what ever entered my shaft many time during the day - for me it's almost kind of obsession and you be aware of everything - maybe even on things that might not related to the Desease....

A woman's sexual health issue indeed seemed to be more popular and there seemed to be more public awareness - I dont know the health statistic of breast cancer in comparison to Peyronies Disease but i belive that the real reason as usually is the Money - If you can make a lot of money whith the Treating of a Desaese by dosents of medies - why should you find a way to heal it entirely ?

Pharmacie is interested in making Money - not interested in healing.

I wonder why there is so weak information of Peyronies Disease at all - i never heard of it until i searched via Internet  to see what matches my symptones....


mG
kovasis

[Jonbinspain]

Mike;

There is no timeline for the acute phase. 12-18 months is average. But it can be shorter or longer.

The time to act is now. Vit E and wait and see is BS!..

Too flexible?? This I don't understand. Does he want to wait for it to calcify? That's ten times harder to treat, believe me!  

Get onto traction asap. Try Pentox, low dose Cialis, ALC, and Citrulline Malate.

If you can afford it, book an appointment with London Andrology Clinic.  

[BravoMike]

Hey jonbinspain - thanks for the response.

I'll look into the ALC & Citrulline Malate which I have not heard of before.

Thanks also for the London Andrology Clinic tip - probably beyond my means but they have one of the better Peyronies Disease information pages I've yet come across.

[Paolo]

BravoMike, Try and get ALC with R-Lipoic Acid included, jonbinspain recently posted me about it, (R)-lipoic acid is a more biologically active form of ALA that offers greater antioxidant properties.

Good luck  

[BravoMike]

Will look into that - thanks Paulo.