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damnthatdent

As promised I wanted to give an update, in my introduction in case someone is interested. I visited a huge university hospital.
They were super friendly and diligent but not really helpful. They examined it and said there is a very small calcification there, but as long as it does not progress I should not think about it. They told me Potaba might help to stop the progression, but for many people it also does nothing. So if I don't have an issue I can keep taking it, but a lot of patients have strong side effects. I'm actually doing fine at the moment, in my subjective opinon the plaque is growing a bit and maybe the dent got a bit deeper, but its really hard to prove or measure. But I have a firm erection and almost no pain (only like once a month, when I have erection). So far I'm just hoping that it does not get worse and potaba does it's "job" of preventing any further damage. I try to not over-interpret the dent as I can't really measure it and also not see it, it only drives me crazy when I think/ overexamine it. As long as it does not affect, I will try to ignore it.
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

damnthatdent

Hello everyone,
Super depressed. I was not here for a while. All went super good last weeks. It felt like the dent was disappearing, since all docs told me potaba is not worth the trouble I stopped taking it. All was great, now I came back from vacation out of nowhere new second plaque. WTF where how why?! It's pretty massive and a small dent is clearly feelable during the Errection. The plauque is again mostly going straight vertically in the penis, like the septum. This thing is a curse. I don't know what to do really. I will start potaba again and then try to organize some appointments again. Will this ever stop ? I ate a lot of meat last week; wondering if this could be the case and also had a alcohol which I usually don't. Strong vegan diet, no sugar, no alcohol -> supplements and potaba that's my plan for now. It's just horrific watching your penis degrade and just helplessly watching
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

damnthatdent

It's getting worse by the day now. The dent is getting deeper and deeper. I don't know how to handle it. All doctors are booked out for weeks. So depressing
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

Gerald12345

Was für ein Mist. You are taking Tadalafil? At least in my case the number of plaques hasn't increased. Don't know if Tadalafil helped with that. But you could try it at a low dose 2.5 or 5 mg per day. You could easily order it online in Germany.
Peyronie's onset in 11/2021. Age 39
Two plaques under the glans. Minimal pain, only congenital curvature.
Tadalafil 2.5 - 5 mg per day + TRT

damnthatdent

Thank you for the heads up! I have not tried tadalafil yet. I want a doctor to tell me if i can take it with potaba at the same time. I'm glad yours is staying stable, fingers crossed for you!! Is there any good doctor you can recommend in Germany?
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

blex

Mist indeed...
My worst changes in number of plaques and shape came when I tried Keto/IF, so I personally don't worry about diet too much anymore.
I was told to take Tadalafil/Potaba at the same time by one doctor, another told me to add pentox, a third one said Tadalfil only...
36 years old, married
---
Symptoms since trauma in July 21:
First calcified nodule in septum near glans
Multiple calcified plaques developed on top
Pain (flaccid/erect), 75° upwards curvature, hourglassing
---
Nothing helped, looking for surgery now

Gerald12345

Quote from: damnthatdent on June 19, 2022, 01:08:59 PM
Thank you for the heads up! I have not tried tadalafil yet. I want a doctor to tell me if i can take it with potaba at the same time. I'm glad yours is staying stable, fingers crossed for you!! Is there any good doctor you can recommend in Germany?

Can't really help with a recommendation for a good doctor. I think they can't really help. Only in case the curve or ED gets that bad that you need a surgery or an implant they might be able to help. I will stick to Tadalafil for now and do nothing else...
Peyronie's onset in 11/2021. Age 39
Two plaques under the glans. Minimal pain, only congenital curvature.
Tadalafil 2.5 - 5 mg per day + TRT

damnthatdent

Have an update here.
https://www.peyroniesforum.net/index.php/topic,10913.msg160373.html#msg160373. Whenever I feel like this nightmare is over it comes right back. I'm not even 30. Now waiting for an appointment thinking of trying Restorex
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

Mikel7

I can say that you need to give the Restorex a try. I read your update where you are and yes peyronies can come and go. It is a mysterious beast. Mine has ceased and it stopped at the 18 month time frame.  I can say though that during the acute stage I did do traction daily with the PMP and Restorex. I took breaks and also used heat therapy. I also incorporated better eating and eliminating a lot of junk sweets. I have never used potaba as I have read about it's mixed reviews.

Mikel7 :)
Lump 4/2020, age 63 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

damnthatdent

Thank you for the empathy. I emailed the sales team but they don't ship to Europe yet as they are waiting since 1.5y for CE approval , which is something I don't get they could ship it as a non medical equipment. Literally I work in R&D in software and our robotics guys can get CE approvals within 6 weeks as long as you can prove basic safety(sorry for ranting). Any idea how people can ship it ?
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

damnthatdent

Now I got an other lump. And the dent gets deeper. Don't even know what's the point anymore. I'm now pretty much 18 months in still new lumps appear and still stuff changing. So the literature seems to be wrong or at least not cover my case. Is this my life from now on 😞 it's just hard for me to say goodbye to the idea of having family and so on. I will not find a wife like that. I'm really trying to befriend the idea that I just will just be on my own for the rest of my life. To be fair it could be worse I have a stable job etc, I can do sports, I can do pretty much everything except sex. It's kinda pathetic that this drains all my joy and energy.
I don't know why I write it here, tbh I think because I have no one that I can talk to about this.
Sorry for the rant.
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

thegreycat

Quote from: damnthatdent on May 21, 2023, 04:52:35 PMI don't know why I write it here, tbh I think because I have no one that I can talk to about this.
Sorry for the rant.

Hey friend.

I just came across your post here - I'm sorry you're going through such a tough time with this. These feelings you talk about are feelings that everyone here can 100% understand, so please don't apologise for ranting.

It's good to get things down, and while like many of us (myself included) you may not be able to talk to anyone about this in "real life", you absolutely have a space space to get your thoughts down here among friends. If it wasn't for my partner, I'd have nobody in the world to talk about this to. This forum has been an absolute godsend from that perspective.

Oral therapies are a non starter unfortunately. What I would suggest, is that you look into start some kind of physical therapy. VED or Traction. If nothing else, it will give you a feeling of "moving forward" with potential treatment. VEDs can be very beneficial when it comes to dents, and there are plenty of positive anecdotal accounts on the forum here.

Stay strong, head up. All the best.
35. No injury. Lump Feb 22.
Pain, dent, left & upward bend ~50deg. Bad EQ.
Cialis Dac 22 - ear issues.
Diagnosed Feb 23.
VED Oct 22. PMP Feb 23.
Lump reduced May 23, dent remains, angle a little better. EQ improved.

Supportive partner, depression.

damnthatdent

Thanks for the heads up, much appreciated! Just came back here after a year. And actually I got lucky the dents disappeared now and knock on wood things are looking normal again. Reason I'm writing here is to let others know there are also cases where things get better. Right now I don't even think about the disease anymore, so my hopes are that its gone for good.
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while

pauli

How come? What do you think helped?

31 yrs old; in a supportiv relationship
first symptoms and diagnosed in february 2018
severe progression since spring 2020
several plaque/indentations and currently 40° up curve

Mikel7

It has been observed that in some men peyronies does heal itself and things return to somewhat normal. Mind you that this is very few men so I would still stick to some kind of a treatment plan.
Lump 4/2020, age 63 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

damnthatdent

@pauli As mentioned above by Mikel, sadly, I cannot pinpoint anything specific. Saying what helped is difficult, and it might be that I'm just lucky so far. I did stop eating anything that spiked my blood sugar (or at least reduced) For couple of months I cut sugar completely. Maybe it was also the potaba or the Citrullin. However, correlation and causality are tricky to establish and hard to draw from the experience of just one person. Statistics is a bitch. It's like the famous pirate and global climate change example https://towardsdatascience.com/hilarious-graphs-and-pirates-prove-that-correlation-is-not-causation-667838af4159. I think really the best chance besides luck is to find a doctor that is up to date with research and that you trust. I had a really good experience with Prof. Hatzichristodoulou, but mainly because he listened and told why which treatmend made sense for me or not. He told me to wait with any treatment in my case back then. I can still feel the knotes but they don't take any effects as of now, so I forgot about it really.. My fingers are crossed for everyone here. This disease is rough. Hang in there.
1 knot in the penis septum since end of 11/2021
No pain, no curve, small dent but not visible, hardly can feel the dent, could be there before Peyronies Disease.
First not calcified, now visible
Meds:Potaba & Citrullin
Diet:Plant based but meat & fish once a while