Introduction, slightly atypical case of peryonies

[blex]

Hey all,
I have read quietly for a while, finally got kinda diagnosed.

So here is my history:

In July 21 I had a reddened glans for a week, after that pain while urinating.

In August I decided I propably had some kind of UTI and went to the general doctor.
Got transfered to the urologist who tested me (all neg) and subscribed antibiotics.

In September other symptoms became more notable. I found a nodule near the glans, which was painful to touch and with erections.
Fearing I might have a stricture, I got a  cystoscopy done. Nothing was found, but after that I had a UTI for real with fever and pain for a week (antibiotics again)

In October I visited a center for STDs, the doctor there told me having one was not plausible, I should get an US to look at the nodule.
I started looking up symptoms online again, and finally remembered having an injury earlier in June/July which I somehow repressed. Found this forum.

In November the uro reluctantly did the US and finally found a calcified 3x3mm lump sitting right below the glans between the two corpus cavernosa.
He didnt mention peyronies or IPP specifically. Only that he hasnt seen something like this before and couldnt really help me beyond recommending painkillers.

Where I am now:

I have a painful nodule in my septum below the glans from an injury 4 months ago, which already calcified.
I dont have the typical symptoms as of now, no curve, shortening or hourglassing.
The nodule is palpable and feels more disc-like than what I saw on the US, so I guess there is some non calcified scarring above and below.
It causes discomfort while flaccid and is very painful to touch and while erect, mostly from dorsal and ventral, almost no pain lateral.
Pain while uriniating seems to come from the nodule applying pressure to the urethra or nerves.

Next up will be an MRI and a visit to a clinic, might also get another opinion from another doctor, who knows more about peyronies.
Will also start tadalafil 2.5mg daily next week.
Might try ESWT for the pain in the future, since that is the main problem so far.

From what I have read here, this might not be "real" or "narrowly defined" peyronies but more like a scar after a traumatic injury?
But this doesnt seem to change  the treatment much or does it?

Thank you for your support so far!
Regards,
blex

tl;dr:

Age?
36

What did your medical doctor conclude?
3x3mm calcified nodule in septum near glans

How long have you had symptoms?
July 21 (4 months)

What are your symptoms?
Flaccid discomfort, painful erections, nodule painful to the touch, no curve, no loss of length/girth so far

What treatments have you tried and what were the results?
1 month L-Arginine, L-Carnitine, Vit-E, Q10, Curcumine - None so far

Do you have insurance or means to get medical treatment?
statutory health insurance - everything but supplements and tadalafil is covered, the latter costing about 1$/5mg

where are you in dealing with the psychological aspects of Peyronies Disease?
Scared mostly, dark thoughts from time to time, angry because the uros told me to wait over and over, none even looking at the nodule I described, for months

Are you in a relationship?
Happily married to an understanding and patient wife

[zaranin]

Hi blex!
I have similarily located, partly calcified scar, undrer bottom right of the glans. Nearly two weeks ago, 2 months after first noticeable symptoms, it was 0.48 cm wide. Now I think it is bigger and grows downwards. My first URO ordered only nonsteroidal inflamatory oral agent with Diclofenac and vitamin E. Second one did not give me any treatment. I went to the third, who prescribed POTABA 4x 3g and Tadalafil 5g at night. Thanks to this forum I added Q10 (Ubiquinol) and Acetyl L-Carnitine. Next time I will ask my current URO about Pentox. My nodule almost doesn't hurt, only during stronger erection. However, I am almost sure that after any such slight pain feeling I had little more scar deposit the next day and I think I must abstain for some weeks.. So as You can see, my treatment seems preety the same like in "true Peyronie". I'm only concerned about possibility of future surgery. I think it can be difficult and risky in case of possible ED development. Nevertheless, I have to wait for some months, which drives me crazy. I started taking anxiolytic and antidepressant drugs.

[blex]

Update:

My situation did not improve so far, in fact I am now certain I have another more typical plaque dorsal (15x15mm) and a small one lateral (5x5mm).
Have visited another doctor today (recommandation from another forum member), who confirmed IPP/Peyronies and also could palpate the plaques.

He prescribed me Potaba for now and I will have ESWT beginning next week.
Told me it might help with pain but is expensive at 80€ per session not covered by statutory insurance.
Will report after that. He also promised me to look into pentox.

@zaranin
thanks for your input, hope you are keeping up!

[Bud luck]

Be careful with Wave Therapy, is not FDA approved and nobody knows if will help or not. I did the P-shot and it was one of the biggest mistakes of my life, since then I stop experimenting with unproven "therapies".

[blex]

Another Update, 7 months in:

1st ESWT session was painful, not the ESWT itself, but the Doctor was rough. Treatment did not help at all.
He imho used the wrong applicator (that one is low energy density and for ED, not Peyronies/IPP) and treated the whole shaft, not the spot of the plaque.

The same day I finally visited the Urologie am Ring in Cologne.
Doctor was really knowledgable, calm and friendly.
He did another US and found that my "new" dorsal plague is also calcified by now (basically looked exactly like google images when you search "peyronies ultrasound")
Calcifications are rather small (4mm), and not really dense or thick, but it sucks that they are clearly progressing while following the survival guide.

He agreed to prescribe me PTX BID (20€/100) and again recommended me ESWT for the pain.
Will report after 3 more sessions.

Still 24/7 pain 3/10, erections hurt more, slight tilt upward/right  

[damnthatdent]

Thank you for the update! Keeping my fingers crossed. I also promised to give an update, but unfortunately probably not much knowledge that is helpful for you.
https://www.peyroniesforum.net/index.php/topic,17551.msg151025.html#msg151025  

[damnthatdent]

I was at Dr. Hatzichristodoulou in Nürnberg this week. He was probably the best Dr. I have had so far, very kind and he knows his stuff, he is really knowledgeable and it seemed to me that he is active in the scientific community(knows papers and seems up to date) (I also saw he also publishes papers on Peyronies and is taking part on writing the european guidelines). In my case he said, since I don't have any real problems I should wait. He was very skeptical about Potaba, he said it has been there for a long time and the gathered data in that time is not really make a great point. He said Tadalafil might be helpful, looking at animal studies that have been done, but the data on humans is not really there yet and he would say its a case by case decision. In my case he would not recommend EWST, because the real upside is only pain relief. Just in case any of the germans live in that area, I would recommend him.

[Gerald12345]

Thanks for sharing your experience. Was it hard to get an appointment with him? Nürnberg is not close to my place but manageable to go both ways in one day. Does he do implants as well. Currently figuring out options in case my ed is getting worse. I'll be having an appointment at an hospital in Frankfurt which claims to be a Peyronie's excellence center. Waiting time for an appointment is 6 months.

[damnthatdent]

I did not talk to him about that, but from what I read about him, I think he is doing that. Also I called the Technical University in Munich and they told me to go to him, because he worked at TUM before. I think if his former hospital recommends him, that is a good sign. But I can't tell you for sure obviously since I did not get a surgery by him yet and hopefully never will, but I guess he would be at least on the list to consider.
Appointment was quite hard yes. I had to wait 3 months and since he is the "Chefarzt" you know the typical drill in germany (only privat patients, or "Selbstzahler"). I have to pay by myself and its gonna be between 100 -180, but lets wait for the bill.

https://www.mri.tum.de/pressemeldungen/zentrum-f%25C3%25BCr-penis-erkrankungen
https://www.ukw.de/aktuelle-meldungen/detail/news/uniklinikum-wuerzburg-fuer-hohe-expertise-bei-penisprothesen-ausgezeichnet/

FYI his pubmed
https://pubmed.ncbi.nlm.nih.gov/?term=Hatzichristodoulou+G&cauthor_id=26953837

[blex]

You are kind of highjacking my introduction thread

So last update here before it gets closed:

I had 1+3 sessions eswt done now, 2 months pentox, 3 months potaba and so far zero improvement.
Next appointment in two weeks, another ultrasound.

Dr. Hatzichristodoulou is the German Peyronie's Surgeon.
He was also recommended by Dr. Fröhlich from Krefeld, who is an experienced surgeon himself, active in the German induratio forum and on onmeda.

If all else fails, these two will be my last hope.