Do I have Peyronies Disease?

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James9876

Hi

I came across this site because I have symptoms that are similar to Peyronies disease but also differ in some ways.  I was hoping that I could share what has happened to me to see if others have had similar experiences to myself and maybe help me to be more certain of whether or not I actually do have Peyronies.

My problem first started around 20 years ago when after lifting a heavy bag I noticed a sharp intense pain at the base of my penis on the right hand side.  The pain continued for a few weeks and then went away however around a month after the incident I did notice atrophy or what seemed like wasting on the left hand side of my penis, this was only really noticeable when I had an erection so it was difficult to explain to any doctors or convince any medical practitioners I had a problem.   This was obviously very worrying as I was only 22 at the time.  After seeing several different doctors I did eventually get to see an urologist in Harley Street in the UK who performed a Caverjet injection to induce an erection.  He then did observe the symptoms I was describing and diagnosed me with Peyronies.  I had a very slight bend to the right and what seemed like a relative small but noticeable reduction in girth of the penis mainly on the right side.  

After the diagnosis I was at least relieved that someone could give me an answer as to what was happening to me.  He advised that as it was over a year since the problem had first started that I was probably over the worst of things and that it should not get any worse. And he seemed to be right.  Throughout the rest of my 20s and most of my 30s I did not have any pain or have any increase in the bend, loss of girth or atrophy.

However around 4 years ago, (I am 42 now) the pain, atrophy and reduction in girth has slowly started to return.   The bend can now be seen when my penis is not erect and my penis feels in a strange way lighter and less dense.  The best way I can describe it is as though there has been a reduction of blood flow to that part of my body and that cells have started to die.   I am also in pain now almost constantly.  However the pain can manifest anywhere on the right hand side of my groin either in penis mainly at the base or in my right testicle and often my right leg.  The pain fluctuates from quite acute to often rather mild.

I have recently been to see an Urologist and also a Andrologist and have had an ultrasound and MRI scan with a Caverjet induced erection and the results came back that I have a very small dorsal plaque but that it was not thought to be the cause of any waste deformity.  My Andrologist however advised that he thought that the plaque was at least the cause of some of the problem and that I should start using mechanical straightening with a vacuum erection device, not done this yet

So that's where I am at the moment.  Currently even though what I have just written I am still in the situation that if things stopped getting worse right now I'd be relatively happy as I can still get and maintain an erection and I have probably only lost around about a quarter inch of girth through the atrophy mainly on the right hand side, however this is hard to judge as the process seems to have been very slow.

Just wondered if anyone can recognise any of my experience so far with Peyronies?  Also is there any thoughts on Pentoxifylline? I have read that It can have a positive effect on Peyronies but also it increases blood flow so may help me even if Peyronies isn't my problem.

Sorry about the long and rambling post and thanks if you read through it.

dever

James, very sorry to hear of it! Does the urologist you saw specialize in Peyronie's disease?

Tychy

Have you been checked out for inguinal hernias or protruded discs in your back?

James9876

Hi Dever,

Yes I original saw an Urologist who admitted to me he didn't have a great knowledge of Peyronies but he referred me to a Andrologist college who specializes in Peyronies.  However I wasn't really happy with his diagnosis he seemed to feel that the initial problem when I was 22 was not connected to the problem I am currently having.  It seems odd to me that I would have one problem and then the same issue start again 20 or so years later and it not be connected somehow.  Anyway I have good health cover so I am seeing another Andrologist to get a second opinion.  A Dr called David Ralph who has had a few good reviews I've noticed on this website.  On a side note do you have any thoughts on Pentoxifylline.  I've heard some positive information on this web site in regards to it?

James9876

Hi Tychy,

Strangely yes, My urologist checked me for hernias and he did feel that he noticed one after a cough and pulse test.  I had an ultrasound scan and they said I may have some small ones that may be helped with surgery.  My surgeon however advised that he does not think any of issues with the penis bend, atrophy or wasting has anything to do with a hernia, just possible the pain but he was hedging his bets and not promising any improvement if I have surgery to have the hernias repaired.  They are quite small if there at all and were not picked up by the MRI scan or my surgeon when he examined me, so I'm not sure what to do there really.

Tychy

I can only imagine impaired blood flow leading to fibrosis. Your onset symptoms speak for a hernia, unless you lifted whatever directly on your penis. Maybe you need an angio MRI (contrast display of veins in the body) to check for cut off.

I would at least suggest a Doppler colour ultrasound for flow checking. If everything there is okay, it's the plaque. Try pentox. It may help with flow (so does Cialis).  

James9876

Thanks Tychy,  I will review what you have said with my Andrologist and see if he thinks an angio MRI and/or a Doppler colour ultrasound would be beneficial.  I think I had a standard ultrasound and MRI which didn't pick much up.  I will also ask for Pentox but I expect I'll have a problem getting it.  In my experience Doctors in the UK often fail to take you seriously until they can actually see that you have a significant penile deformity, by which case its often too late to offer any significant help.

dever

James, I am just starting into this process but already I find that sometimes I need to help lead my doctor along a little bit. There is a LOT of good information on this site and many helpful people. I wish you luck! Also I sent you a PM.