Mild peyronies - advice and support

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Happaslarry84

Hi all

I've been looking at messages on this forum for over 6 months now but thought I'd introduce myself.  I was masturbating last June and noticed a sharp pain - from then on whenever I pressed my penis there was a slight pain although erections were fine and no curvature.  I saw a specialist in the UK and he diagnosed me with 'mild peyronies'.

I have had slight dull pains when flaccid and erect although I can get fully erect - I guess this is the scar tissue being stretched?  Its almost a year and still no sign of ending the 'acute' phase.  I guess its the sporadic pain that's most annoying - not debilitating enough to take pain killers or prevent me from my daily activities but not subtle enough for me not to think of pain daily and whether or not it will go.  The andrologist has assured me it will go and to 'be strong' and suggested that if its still there in a few months then to start on Verapamil injections but these are costly (£6000 for 6 shots over 12 weeks).

Has anyone experienced something similar?  Appreciate your thoughts...

Regards

Harry (from London)

Jonbinspain

Mild Peyronies??  All I can say is, Peyronie's is Peyronies.  Mild it may be right now, but that can change!  

What have they recommended apart from wait and "if it's still there?"  You can bet it will still be there. I'd suggest finding another Urologist ASAP, but I know that in the UK that's easier said than done. Be aware! Spontaneous resolution of this condition is extremely rare. I'm not trying to scared you, but you need to understand what you're up against here. Your Urologist clearly doesn't, or doesn't care. You need to start treating this now! Many of the supplements, such as ALC, Citrulline Malate, CoQ10 are available to buy.

Read all you can on this forum. There is more accumulated knowledge about this diseease here than is possessed by most Uro's - certainly far more than the one you've seen.

Ma

Happaslarry84

Hi Jonbinspain

Thank you for your thoughts.  The urologist I am using is actually an andrologist with a speciality in Peyronies and one of 6 or 7 specialists in the UK.  He has conducted research and written academic papers alongside the likes of Mr David Ralph and Mr SUkhs Minas.  I am seeing him in a private capacity and hence paying a considerable amount every time I visit him!!  This was following an experience with an NHS Urologist (national health service in UK is free) that didn't have a clue after waiting 3 months for an appointment - at least this consultant I can see within 3 days of calling his secretary as long as you can pay his £175 fee per appointment!

I saw him last night and he examined me both flaccid and erect and stated that there was still thickening on left side (plaque/scar) but right side was fine - this thickening in his view was no more than that when I saw him 3 months ago.  My erections were straight and normal.  I am still in acute stage given that it has been 12 months since onset but it could be another 6 months before I reach chronic stage.  I should have mentioned my current cocktail for the last 7 months has been:

C0 Q10 200mg
Vitamin E 400mg
L-Arginine
L-Carnatine

I am starting the Acetyl L Carnitine (powder form) today and I was prescribed Pentox 400 mg x thrice daily by the consultant for next 3 months to see if this helps with pain.

I think this is the best thing and hopefully I can end the acute phase in peace...lets see what happens.  I may see another top peyronies consultant for a second opinion but have faith in my guy at the moment.

Regards

Harry

james1947

Happaslarry84

In my opinion you are doing everything you can to fight this disease, except using VED and adding 2.5 mg Cialis daily.
Hope the treatment will stop the progression of the disease :)

James
Age 71, Peyronies from Jan 2009 following penis fracture during sex. Severe ED.
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

Hi Happaslarry84,

Have to agree with Jonbinspain that mild can turn into something worse, and early treatment even when it is considered 'mild' is the absolute best thing.

Looks like your andrologist has you on the important things, pentox, coq10 and ALC. As James1947 mentioned, low dose daily or every other day Cialis would be the only oral treatment missing right now.

One thing I would like to say, the time frames mentioned re chronic/active vary hugely from person to person. In my experience there is no such thing as a reliable timeline for Peyronie's, to the point that even saying 'average' time till stabilisation would be hugely misleading. We've seen people here who still have pain after years, others who think it has stabilised then years later things progress even further, people who stabilise in 6 months and it never changes after that etc.



 
This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]