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[Guy_87]

My GP wants to do an ultrasound before Urologist referral. 

With COVID lockdown, I cannot see him for an examination so had to take pictures of swelling and minor bend (5-10 degrees).

So I have an ultrasound booked for end of July.

This ultrasound will just be done by a general technician in what I assume will be a flaccid state.  Is this still sufficient to pick up plaques, scar tissues, calcifications etc.?

I already found a Peyronies Specialist in my area who will see me but I need a referral.  Hence my GP wants to do an ultrasound to warrant a referral.

Can a general penis ultrasound miss plaques/fibrosis/calcifications?

There is still that glimmer of hope that this is a hematoma (someone on noFap said he had all the symptoms of Peyronie’s but turned out to be a hematoma) or a lymphocele (someone’s else on noFap again was convinced he had Peyronie’s but turned out to be a lymphocele with swelling and knobby bump).

I have a small, quarter of a pea sized rubbery bump, deep down that you cannot see on the skin surface but a lot of surface skin swelling.  Minor 5-10 degree curve to opposite side the bump and inflammation are on so not sure if the curve is due to swelling pushing head to the opposite side or if it is Peyronie’s and just curving to the opposite side of the bump/inflammation as an anomaly (curve usually pushes to same side of bump/fibrosis/calcification).

Sigh.

Btw, In 1 month, no change in curve (KNOCK LOUDLY ON WOOD!).  How many months (on average) can go by without an increase in curve before it will not likely get much worse? 

Thanks

[TonySa]

I’d say ultrasound is a good idea—esp if they find something else...knock on wood that’s it...

[peter123]

i had an ultra sound yesterday with an andrologist and he said there was nothing to see however he thinks I clearly have peyronies due to the curve and indentation and pain. he said he can palpate an accumulation of tissue where I experience the bend. he said this is not uncommon in the early stages of peyronies.  but literature suggests otherwise. bottom line is, nobody gives a [email protected]< about men who suffer from peyronies disease and there is no clear way to diagnosis even

[Guy_87]

I guess my only real hope is that they find something else...there is swelling.  Here is hoping.

Everything is so seemingly contradictory re: diagnosis.

[Guy_87]

i had an ultra sound yesterday with an andrologist and he said there was nothing to see however he thinks I clearly have peyronies due to the curve and indentation and pain. he said he can palpate an accumulation of tissue where I experience the bend. he said this is not uncommon in the early stages of peyronies.  but literature suggests otherwise. bottom line is, nobody gives a [email protected]< about men who suffer from peyronies disease and there is no clear way to diagnosis even

Peter, you may not have Peyronie’s.  I have been doing research and found the following regarding US (Ultrasound):

US (Ultrasound) is the primary imaging modality of choice due to its easy availability, low risk, and ability to image and quantify both calcified and soft tissue elements of Peyronies Disease.  US provides identification of smaller and non-palpable lesions and shows the extent of fibrosis.  Detection of calcifications within the plaque suggests stabilization of the disease and provides information useful to select patients for appropriate treatment.

Ultrasonography is performed due to its easy availability, low risk, and ability to image and quantify both calcified and soft tissue elements of Peyronies Disease.  Additionally, the vascular status can be assessed if it is indicated.  It also provides identification of smaller and non-palpable lesions and evaluates the extent of fibrosis.  This information has clinical relevance because sonography can show lesions that precede the formation of classic plaques.  Careful sonographic evaluation is needed in order to identify subtle forms of the condition.[/u]

So Peter, the part I underlined in the second paragraph should be of most relevance to you.  As it states then when done carefully, US can identify even subtle forms of the condition, even showing the lesions that form before the plaque.

From what I understand, you have seen 4 Doctors.  3 said Peyronie’s and 1 said not Peyronie’s.  You had an inconclusive US, meaning that the test did not show Peyronie’s via US imaging.

Maybe it is worth getting an additional Ultrasound from a new place with another Specialist?  I would definitely get a second opinion on the Ultrasound if it was ‘clear’ but you have 3 out of 4 Doctors diagnosing you with Peyronie’s.

[peter123]

When it comes to this crap a country like Germany is a third world country. I have 10 minute appointments and they'd much rather not do an ultra sound at all and just make me leave. That's the reality of socialized medicine. There is no specialist here. Their speciality is helpi g 80 year olds with urinary tract problems. Not one good paper ever came out of this country, they rarely do even for other diseases.

I had 3/4 say pe, ronies and the other said Form my description it sounds like it but he cannot say for sure based on the US. They all said that there is a palpable thickening of tissue at the spot of the bend and they agreed that the pictures have obvious curvature and indentation. My curve is over 20 degree what the heck else could produce this?

Another thing is I have to wait wverytime to get an appointment, the next one I can get in October. If I kill myself ill make a note and I will make sure to partially blame this f'~c<+d up system where you are completely left alone. I would love to spend a thousand bucks to get to Levine or Dr lue, see an actual doctor and who knows maybe they even care about the problem and your mental decline instead of just waiting it out and basically feeling insulted when a 2w year old has many questions. Maybe they'll just anweer them like non arrogant lunatics. Maybe. I even had the idea to threaten suicide so I can get another appointment but quicker. That's how desperate I am. That's how left alone you are in this rotten country.
You have to wait for everything. Even a psychiatry clinic for depression gave me a waiting time for half a year. As if I am still alive by that time.


I just don't get how something that is visable with the naked eye cannot be picked up by ultra sound. I truly don't.

All this arrogant andrologist did was tear me up even more. I was literally almost jumoign for a train after I left his office. That's how devastating his description has been. He also said that chronic phase is a myth, that often times peyronie's comes back and gets worse and worse 4 to 5 years later, that he has patients that have had this happen to them for years now and that one cannot say how bad it will get. That I'm long not over the fence, that I might require surgery and get severe hourglassing. He basically said I should prepare for anything. That completely destroyed my mentally. I have been living with clinical depression and body dysmorphia for almost 20 years now. Part of my dysmorphia focused on my dick. It's impossible to describe what it feels like to have your dick waste away by this disease when you have had a preoccupation with it in the first place. But with 4 inches, who would be surprised.

I want to life, I know life can be good int heory for many people. But I can't see a good path forward for me and I have been thinking about this non stop for years now, even before peyronie's I was suicidal and depressed but this got me destroyed completely. I don't know what to do anymore and I'd probably need to submit myself to a mental health clinic bc weekly sessions are not cutting it at all.


8 just needs someone who cares about this but I have lost hope that I'm. Ever going to find someone who can sit down and do an actually good examination, answer my burning questions but I also realize peyronie's to me is like getting malignant cancer, the big difference been that you'll get actual attention and this crap will get treated as aggressive as possible.. With peyronie's you see 4 docs and get 4 opinions and no help anyway

[Pfract]

So... ultrasound done by a general practitioner? what does he know about peyronies and urology in general? it's the first time that i am hearing that the GP wants to do an ultrasound. Yes, they do an examination to determine you need to see a Urologist. But an ultrasound? To me, having had one done by a GP in 2014 i will tell you straight up it's a waste of time. Not to mention, that is it going to be flaccid  or erect? because it makes a difference.

I am also in Canada, Ontario and on the several occasions i was referred to one i never needed a ultrasound. Seems very weird.

[peter123]

Mine was by an urologist specializing in peyronie's so

[Guy_87]

The GP referred me for an ultrasound which will be done at a clinic that does penis ultrasounds.  Then if there is something found on the ultrasound, he will refer me to the Urologist specializing in Peyronie’s.

I would have rather gone straight to the Uro but he wanted to do ultrasound first.  He couldn’t physically examine me because of lockdown.  Only virtual appointments using Zoom App.  The GP is not doing the ultrasound.

[TonySa]

Sounds like a solid plan guy!

[Guy_87]

That is what I do not understand Peter.  Especially since I was researching and studying some papers and it said that even subtle lesions that are precursors to plaque can be picked up by US when performed carefully.

I really think you should go to another Specialist and Clinic and have another ultrasound performed for another opinion.  Just my 2 cents.

[Guy_87]

Sounds like a solid plan guy!

Thanks Tony.  Best I can do atm with lockdown.  I would have preferred a physical examination but what can you do with COVID restrictions?  Just hoping it is something else...time will tell.

[Peyrat79]

When it comes to this crap a country like Germany is a third world country. I have 10 minute appointments and they'd much rather not do an ultra sound at all and just make me leave. That's the reality of socialized medicine. There is no specialist here. Their speciality is helpi g 80 year olds with urinary tract problems. Not one good paper ever came out of this country, they rarely do even for other diseases.

I had 3/4 say pe, ronies and the other said Form my description it sounds like it but he cannot say for sure based on the US. They all said that there is a palpable thickening of tissue at the spot of the bend and they agreed that the pictures have obvious curvature and indentation. My curve is over 20 degree what the heck else could produce this?

Another thing is I have to wait wverytime to get an appointment, the next one I can get in October. If I kill myself ill make a note and I will make sure to partially blame this f'~c<+d up system where you are completely left alone. I would love to spend a thousand bucks to get to Levine or Dr lue, see an actual doctor and who knows maybe they even care about the problem and your mental decline instead of just waiting it out and basically feeling insulted when a 2w year old has many questions. Maybe they'll just anweer them like non arrogant lunatics. Maybe. I even had the idea to threaten suicide so I can get another appointment but quicker. That's how desperate I am. That's how left alone you are in this rotten country.
You have to wait for everything. Even a psychiatry clinic for depression gave me a waiting time for half a year. As if I am still alive by that time.


I just don't get how something that is visable with the naked eye cannot be picked up by ultra sound. I truly don't.

All this arrogant andrologist did was tear me up even more. I was literally almost jumoign for a train after I left his office. That's how devastating his description has been. He also said that chronic phase is a myth, that often times peyronie's comes back and gets worse and worse 4 to 5 years later, that he has patients that have had this happen to them for years now and that one cannot say how bad it will get. That I'm long not over the fence, that I might require surgery and get severe hourglassing. He basically said I should prepare for anything. That completely destroyed my mentally. I have been living with clinical depression and body dysmorphia for almost 20 years now. Part of my dysmorphia focused on my dick. It's impossible to describe what it feels like to have your dick waste away by this disease when you have had a preoccupation with it in the first place. But with 4 inches, who would be surprised.

I want to life, I know life can be good int heory for many people. But I can't see a good path forward for me and I have been thinking about this non stop for years now, even before peyronie's I was suicidal and depressed but this got me destroyed completely. I don't know what to do anymore and I'd probably need to submit myself to a mental health clinic bc weekly sessions are not cutting it at all.


8 just needs someone who cares about this but I have lost hope that I'm. Ever going to find someone who can sit down and do an actually good examination, answer my burning questions but I also realize peyronie's to me is like getting malignant cancer, the big difference been that you'll get actual attention and this crap will get treated as aggressive as possible.. With peyronie's you see 4 docs and get 4 opinions and no help anyway

Hey Peter, similar were my experiences with the german doctors. This spring one "expert" damaged my dick with a intracavernosal injection, so it took me an odysee visiting 7 urologists/hospitals. I can recommend the universitary hospital in Giessen - but take care that you will see an "Oberarzt"/andrologist, because in my case there was only a young doctor (assistant physician). Another guy that was helpful is an andrologist in Bielefeld. He did a somewhat conclusive ultrasound and offers EMDA sessions. But in my case he was not very cooperative in handing out the diagnostic material (just gave me a lossy print out of the US and a very sparse report), so I had to "fight" for this, which felt so humilating. A friendly experience I lately made with an andrologist at the university hospital in Tübingen. I felt taken seriously and he at least offered a somewhat conclusive hypothesis of what might have happened in spring. But again - the print of the US is of low quality. I hope I can get a digital version. But probably they did not store it. That's truely the common state of peyronies treatment in Germany. I now search for a possibility to do an MRI, but without further intracavernosal injections...

[peter123]

Hey Peter, similar were my experiences with the german doctors. This spring one "expert" damaged my dick with a intracavernosal injection, so it took me an odysee visiting 7 urologists/hospitals. I can recommend the universitary hospital in Giessen - but take care that you will see an "Oberarzt"/andrologist, because in my case there was only a young doctor (assistant physician). Another guy that was helpful is an andrologist in Bielefeld (right in the center at the "old marcet place"). He did a somewhat conclusive ultrasound and offers EMDA sessions. But in my case he was not very cooperative in handing out the diagnostic material (just gave me a lossy print out of the US and a very sparse report), so I had to "fight" for this, which felt so humilating. A friendly experience I lately made with an andrologist at the university hospital in Tübingen. I felt taken seriously and he at least offered a somewhat conclusive hypothesis of what might have happened in spring. But again - the print of the US is of low quality. I hope I can get a digital version. But probably they did not store it. That's truely the common state of peyronies treatment in Germany. I now search for a possibility to do an MRI, but without further intracavernosal injections...

Hey Peyrar79,

Yes I will actually be in giessen in a couple of days and I'm seeing Oberarzt Dr hauptmann. They have an entire Sprechstunde for ipp patients. I'll also see Dr leiber in Freiburg who did the German trials for xiaflex and seems very knowledgeable int he areas of Erectile Dysfunction and peyronies disease. I also want to do an mri as I have cords in my penis and I need to find out what exactly they are and whether they will activate at some point like the one cord on the left.

The problem is many urologist in Germany haven't specialized int his and there is not making much money with it besides doing shock wave therapy and that's exactly what happens now, many clinics opening up as peyronies specialists and they do shock wave therapy which costs more than 100 euros per session and doesn't have any scientific benefit. But they do them anyway for pain as they say and to break up calcified plaque, on the latter there is no study on this even working. I hope to start some edma therapy in giessen though, doing something at least.


I am. Wondering though, is an mri more conclusive than US? Certainly. More expensive

[TonySa]

I understand an MRI may be a somewhat better diagnostic than ultrasound bit it’s too expensive to start w.

[Peyrat79]

Hey Peyrar79,

Yes I will actually be in giessen in a couple of days and I'm seeing Oberarzt Dr hauptmann. They have an entire Sprechstunde for ipp patients. I'll also see Dr leiber in Freiburg who did the German trials for xiaflex and seems very knowledgeable int he areas of Erectile Dysfunction and peyronies disease. I also want to do an mri as I have cords in my penis and I need to find out what exactly they are and whether they will activate at some point like the one cord on the left.

The problem is many urologist in Germany haven't specialized int his and there is not making much money with it besides doing shock wave therapy and that's exactly what happens now, many clinics opening up as peyronies specialists and they do shock wave therapy which costs more than 100 euros per session and doesn't have any scientific benefit. But they do them anyway for pain as they say and to break up calcified plaque, on the latter there is no study on this even working. I hope to start some edma therapy in giessen though, doing something at least.


I am. Wondering though, is an mri more conclusive than US? Certainly. More expensive

Exactly, they recommended me the shock waves in Tübingen while other urologists strongly warned me due to possible side effects. After 4 EMDA-sessions in Bielefeld I bought an italian device on my own, but I am not sure if the electrode is of the same quality than the vessel that the docotors have. But these are kind of expensive (more than 100€ for 10 applications if you have no private insurance)... About the MRI: if you do it with an injection it's probably more reliable than US what soft structures concerns, but not so for the calcified plaques. In my case I assume there is a (soft) scar resulting from a hematoma, so I guess an MRI would be worth the try. But there is not really data for doing it without an injection :-/ Good luck for your visit in Giessen! If you want so, keep me posted!

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