Hello everyone. Recently diagnosed.

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coastalpete

Hi there. I was diagnosed about a month ago, though I've noticed the deformity for about two. My urologist explained in detail as much as he knew of the disease but for me, the really depressing thing is the speed of bending. When I saw the doctor with my photographs, we estimated the angle to be about 25 degrees. It is now about 35. I'm sure I am not alone in wishing to myself that it would just stop! I was offered no immediate treatment but am taking Vitamin E and trying to massage the area of the plaque when flaccid.

Anyhow. Hoping to get more help via this forum.
Coastalpete. :)

Dan2

Hi Pete,
I've been wanting to post something here for a while by way of a hello as well.
I had been living with this trouble for a really long time without going to a doctor about it.
No excuses really,just not wanting to face an awkward moment at the doctor's etc.

About 5 years ago,after a particularly heavy period of sexual activity I noticed 2 pea sized lumps in the side of my penis, about half way down,specifically where the tips of my fingers grip it while masturbating.
Wondered about it but did nothing to find out more.
About a month later I noticed these now had a kind of dent around them,then came a reduction of erection ability,I was about 45 at the time and have always had a high sex drive with regular erections and sex.I also got the bend everyone mentions.( the dents and lumps were on the left and my penis bent to the left.) I also lost about an inch in length an some in girth.Very very alarming.
I eventually got to a doctor at my sexual health clinic at St Thomas's in London.
He  diagnosed Peyronies Disease but did'nt really offer much help except to say that it would get slightly better as the phase moved from active to stable...
I left it at that,and bought some vitamin E which had no noticeable effect either way.

About a year ago,having accepted that I now had a smaller,thinner penis and thinking I had to just get used to this life changing difference, i felt that it was all starting again!
I had lost an inch in length, I couldn't really afford to loose any more!

I went back to St Thomas's and was more determined to seek practical help this time.
The situation was now to alarming to allow for the luxury of embarrassment...
I was given an appointment with a urologist at Guy's Hospital in London.( i forget his name,but will find it and post it up.)
He sent me to Paul Hegarty at Guy's whom he said is the expert in Peyronies and how to treat it.
I would reccommend that you get a referral to this excellent urologist as soon as possible.
He has told me about a trial which will have been completed in about 11 months' time, using clagenase to disolve hard plaques in the penis. They are very hopeful from existing results that this will help Peyronies Disease patients.If successful it will disolve the lumps,giving back original shape and length.
Sounds too good to be true perhaps but I believe it will work,from what has already been found on trials in similar conditions of the hand.( duypetrens contractures).

More good news came in the shape of a prescription for a Vacuum Erectile Device ( VED)  ( single cylinder),which I now have and have been using for 10 days as directed in the manual and also taking advice from the very complete directions for use available on this forum.
I can say that I have already lost the dent I had had for at least 6 years,I have also now got my penis back to being quite fat,even when in its flacid state. I don't have problems with getting an erection when aroused, and it looks like it did before all of this happened except for the loss of about an inch,which I think is also being slowly reversed.

I can hardly believe it myself,but regular( morning and evening) and proper measured use of this device has, after only 10 days, given me back my sense of manhood, confidence,increased libido,and all that comes with this!

I will continue to use this device as directed on this forum.
I believe JackP has a good set of instructions for the single cylinder device.
I will also read up more about what medicines,vitamines,etc might help in conjunction with this therapy.
I have used Cialis20mg on and off for a couple of years without the device just for better sex without worrying about loosing my erection.
I will continue to use this as now I read that it may also help in disolving the hard plaques.

Don,t hesitate to send me a personal message if you would like to have more info on my progress so far and where to get help.
I see that you ae also in the UK.

Best
Dan2012

Then about a year

coastalpete

Thanks so much for your interesting story, Dan. I have made a note of some of your suggestions.  :)

james1947

coastalpete

Welcome to the forum.
You are just in the beginning of this disease and this is the best time to treat it with good results.
Don't wait for long time as me and others like Dan2012 has waited.
You have to see a specialist as son as you can and begin treatment.
My daily treatment is:
2*400mg Pentox (Trental), if don't have side effects 3*400mg is better.
4mg Cialis (cutting the 20mg in 5 pcs)
2*1000mg L-Arginine
2*100mg Ubiquinol, if younger than 40 may use 2*100mg CoQ10, much cheaper
VED, 20 minutes
You can expect improvements after six months or more, some people have faster improvement. Consistency is the key of this treatment.

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

coastalpete

Thanks James. I am going to look into the treatments you mention. My urologist wants to see me in six months time but it is clear from what you all say that I need to be dealing with it now and not just waiting to see how bad it gets.  

james1947

coastalpete

The worst thing is to wait. For the doctor is easy to say just wait, he have no Peyronies.
You have to treat it NOW, don't wait.

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