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Welcome to J Francois Eid, MD - Directly answering member questions in the "Medical Professionals" section below the Treatment boards.
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Author Topic: Agressive peyronies / multiple plaques / autoimmune disease?  (Read 833 times)

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bentoboy

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Agressive peyronies / multiple plaques / autoimmune disease?
« on: February 05, 2022, 03:11:17 PM »

Hi there,

My story started at the beginning of 2020 when I started having some inflammation of my penis glans. There were some dark red spots/patches randomly located on my glans - no pain, no problems with erection or anything like this. Of course, I was very concerned so went to a number of urologists, each of whom was confused and lost. As a result, I was prescribed different creams, antibiotics, and other pills to treat the conditions. At some point, I was even diagnosed with trichomoniasis (only third test came back positive, and the doctor who took it was a bit shady so I'm not sure if I actually had it). I treated it with quite strong antibiotics for about 10 days but to no avail.

So, the last option of treatment was to have circumcision. I had a circumcision, and the inflammation went away, but some barely perceptible lesions remained (not too bad). I was still concerned that this condition could be serious so I visited several dermatologists to make sure it was not lichen sclerosis or something like this. One of my doctors suggested to do a biopsy, which I showily did, and which came back negative. Well, it came back negative for LS but the diagnosis was - chronic balanitis.

About at the same time as inflammation occurred, I started having some other issues: very loud popping in my joints and chronic rhinitis (constantly blocked nose and collection of mucus in my throat). Alright I thought, it might be an infection that causes numerous symptoms. So I did tens or probably almost a hundred of different blood, urine and other tests - all of them fine and with no signs of something bad.

• but there were some problems that are not necessarily related (low ceruloplasmine, vitamine D deficiency, a bit low monocytes and a bit high lymphocytes) + plus I had a low-grade fever from time to time (about C 37.1 - 37.2); almost low SHBG and as a result high free testosterone)

A few weeks after circumcision, I noticed a 40-50 degree curve in placid penis (but more or less alright when erect), so I became even more concerned when noticed this. I went to the urologist who had conducted the first circumcision and asked him about this problem: he told me it was not Peyronies but some kind of connective tissue disease (hahaha, what an idiot). He suggested that I should do some penile vacuum therapy (or whatever it is called) and this is exactly what I did for about 2-3 months - no result.

Also, because the quality of circumcision was not very great, I suggested that it might have caused the curve (there were no lumps or anything back then). So, I told the doctor to conduct another circumcision to make sure that I don't have too much or too little skin left on the side. He said that it wouldn't help the curve but would make the penis look a bit better (I was stupid enough to agree). So, I had a second circumcision which made it look much better (with no excessive skin on the sides) but didn't make the curve better.

Later I noticed a small lump on the left side (quite dense) which was causing this curvature. I moved to Belgium to continue my studies and, while labouring on my academic papers, found a urologist. He injected something into the shaft to cause an erection and then checked for plaques - Peyronies was confirmed. I was a bit relieved thinking that alright one plaque not too bad - I'll manage it. The guy suggested that there are 3 last shots of Xiapex available in the country costing only 600 dollars. Of course, I agreed. The two first shots were fine, no pain or bruising or anything. But the third one proved to be a pain in the neck. One week after the shot, I tried to masturbate. The plaque broke and blood collected under the skin as a result. I freaked out at first but then decided to stay calm because it wouldn't help. I called the doctor saying that the plaque broke and now I have a blood bubble or something. Briefly, I massaged the bubble away and it helped. The interesting thing is that the curve substantially improved and it seemed I didn't have any indentation on the left side anymore. I was happy at first but then the plaque solidified a few days later and the indentation came back. Oh well. The curve was about 30 degrees back then.

Apart from getting me Xiapex shots, the doctor was quite useless because he didn't believe in traction and didn't think any other medication would help. So, I decided to do it on my own and bough a penile traction device which I used for about 3 months 5-7 hours daily. Not sure if it improved the indentation but lengths and girth improved. Concerning my curve it remained pretty much the same, I don't think the device was of much help in this respect.

Then, a month after having had Xiapex shots, I noticed that two new plaques emerged at the bottom of my penis (about August 2020). I had mild pain when flaccid but not too bad; it didn't cause any curvature at the beginning but then I noticed about 30-40 degree curvature upwards (occasional! sometimes more or less normal). Late December 2020, I noticed that another plaque emerged just below the glans, in the middle. It doesn't cause curvature yet but it's quite solid and might cause some in the future (I'm afraid).

- treatment used since December 2020: shockwave therapy - 10 days (felt good but no result); diaper - 3 shots (you know the story); vitamin A, Q10 300mg, Boswellia, pentox (a month), L carnitine (a month); penile traction device (3 months - ongoing), RestoreX (2 weeks - ongoing).

Anyway, I've been trying to find the reason for why I got Peyronies. As I had a number of health issues, I suspected that I might have an autoimmune disease like RA or something like this (because I have joint pain from time to time, red eyes, digestive issues). So I went to a rheumatologist and did a number of blood tests. Most of the tests came back negative but protein C3 was one point lower than the norm. So, I definitely don't have RA but the doctor suggested that I still can have Behcet disease even though almost all test results came back negative.

- Now: I've been having quite bad digestive issues (bloating, stool issues) and vitamine deficiencies over the past two years. So, now I planning to visit a good gastroenterologist to check if everything is alright (had chronic gastritis in my childhood). Perhaps my digestive issues somehow affect my petronius - I don't know but we'll see.

Please tell me if you need more info concerning all this. I got a lot of info but definitely don't want to mention to many details.

I also attached a drawing that indicated where my plaques are located. And [CAREFUL] also attached a picture that I took recently so that you can see the curvature.

Also, for those who are concerned about my mental state, it's quite bad and it's particularly challenging to manage this while doing my studies and knowing that the condition is getting worse and worse. However, I have taught myself to persist whatever happens (perhaps thanks to my Russian and Polish origin, lol) and I think that we already have too much misery and pain all around us. So, let's try to do everything possible to tackle this.

Besides, even if our penises are not as good as they used to be, even if we remain alone until the rest of our days, or whatever else happens, it is still a decent thing to do to persist and keep on living, which is already an act of courage. Plus, this experience is not only a curse but also a blessing (in a way). If you go through it and survive, become stronger, this is exactly what will make you a man - not your penis or any other thing.

Thanks for reading until the end, much appreciated.

Cyril

https://file.io/4iAE1C4kGi7V

https://file.io/jUqgfEMZ1apj

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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #1 on: February 09, 2022, 08:35:21 AM »

Follow-up: had an appointment with one of the best urologists in Belgium. He said that I have about 30 degree curvature to the left, no calcification. He said although my case is quite unfortunate it's still not too bad compared to some other patients. So, he suggested that I should not have a plication surgery but should focus on traction instead.

He was quite sceptical about Pentox and other supplements but said that traction might be a solution, so I'm going to keep on using RestoreX and a traction device (for at least a few hours daily).

I'm quite concerned about the latest plaque that appeared late December, just below the glans. it used to be barely perceptible but now is quite solid and noticeable. well, hopefully Restorex will help to soften it, and it will not cause further curvature (now i have about 30-40 upward curvature).
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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #2 on: February 15, 2022, 02:50:38 PM »

Follow-up : today I ordered the SomaCorrect vacuum penile device and hopefully going to get it somtime next week. Having read some posts about the VED therapy, I got quite curious if it could help to improve the indentation that I have on the left side.

Also, now I am pretty much positive that there is another plaque slowly solidifying (bloody hell). A few weeks ago, I noticed some mild pain just below the glans on the dorsal side - thought it was nothing serious because I couldn't feel any plaque or anything. Now I can definitely feel something, and it seems it is a plaque (almost 100% sure about it).

In addition, yesterday I paid a visit to my gastroenterologist. I had a colonoscopy (plus biopsy), a few blood and other tests to check if there's anything going on. For some reason, I think that my Peyronies and autoimmune problem might be related to my gut issues. So, I'll try to treat my stomach issues and then will see if it improves my other symptoms/diseases, as a result.
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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #3 on: February 23, 2022, 04:03:22 AM »

Update: now I clearly have two new plaques - on dorsal and ventral sides, just below the glans. The plaques are quite solid and I can feel them easily. Also, I think I'm slowly developing an hourglassing because of these two plaques (perhaps?) or may be because of some other plaques in the area that haven't appeared yet. I mean, I check it every single day but cannot feel anything as of today but it still feels quite bizarre and not completely normal (paranoid perhaps?).

This whole thing really drives me crazy. That's fine to have one plaque, two plaques, alright three plaques, but for [email protected]< sake why am I getting new plaques over and over again? I just don't get it. I've been taking medication (not everything from the forum recommendations though) and have been doing traction and counter-bending almost religiously. There's not much improvement so far, even with Restorex (although this kind of stretching feels good, damn).

Sometimes my penis looks more or less fine, acceptable. But sometimes I wake up and it's just a crooked piece of meat which is trying to do some form of a diabolic dance. For [email protected]< sake, I came to the point when I periodically have dreams about worsening of my curve and more and more plaques emerging (almost like slow petrification or something).

The problem is also that I'm a student and I've been doing my masters at a very specific kind of institution. Here, students don't cook but go to the uni canteen three times a day, and apparently I can't just ask the canteen stuff to cook me something compliant with keto diet. And I think I will be able to have a diet that I need (low-carb, keto or whatever) only in 5-6 months. And as far as my experience is concerned, I can easily get a few more plaques in this time period. 

I have ordered penimaster pro and VED to try to improve the indentation that I have and perhaps avoid this hourglassing that is slowly developing. But I'm just not sure if it isn't just a waste of money and time because I've tried quite a lot of things so far and nothing really helping.

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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #4 on: April 01, 2022, 05:22:55 PM »

[Update]

• Having been using RestoreX for already three months, there is no change whatsoever. Even though it gives me a very nice stretch, and the plaques become much softer (temporarily), overall I can't see any reduction in curvature or in my left-side indentation. Well, it is really disappointing as I had quite a lot of hope for it...

Question: do you think I should keep on using it? Just to see if there's any improvement once I hit the 6-month period.

P.S. I'm not sure if I should keep on using it because there's something that really concerns me. After every time I use it to strench my left-side plaques for at least 15 minutes, the right side looks really bizarre - RestoreX puts some pressure on the right side and then it looks like there's some kind of indentation/hourglassing (not sure how to explain it, hopefully you got it.

• I have been using Soma VED for a bit more than a month, and it's incredible. It feels really good and it gives a really good stretch. Also, last week when I took a picture for my "Peyronie diary", I noticed that both curvature and indentation somewhat improved (I can easily see a difference when comparing pictures)

==> so, I'm going to keep on using it, for sure. A few days ago, I came across a post by some guy here on the forum saying that he used the devide twice every day (15 minutes each session) and it helped him to completely get rid of the curvature and indentaion. Currently, I'm using the device once a day, 20 minute session. What do you think about it?

• Recently, I also visited a gastroenterologist (did a colonoscopy) and a rheumotologist (for my Behcet disease suspicion). Concerning the former, the colonoscopy didn't show any abnormalities - I'm completely normal. In the case of the latter, a group of rheumatologists examined me and came to a conclusion that the symptoms that I have could be an early sign of some form of an autoimmune condition but it's impossible to tell at this point.

• the plaque on the right side, just below the glans, has become somewhat harder and so more visible. I'm afraid that there's still some inflammation that causes more and more plaques. The problem is that I don't know how to stop this inflammation (doctors don't know as well). Do you have any ideas by any chance?

Medication that I currently use:

- Coq10 400 (once a day)
- L-argenine 1000 (once a day)
- extract Boswellia (once a day)
- probiotic complex (Hey nutrition; 2 a day)
- Ginger and turmeric 300 each (once a day)
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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

Asphyxia

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #5 on: April 02, 2022, 09:12:38 AM »

I also have digestive issues and from my understanding autoimmune diseases and inflammation are connected to gut health, things like intestinal permeability, SIBO, sifo, candida overgrowth, food intolerances, parasites h.pylori, dysbiosis etc,

There are many type of tests for each condition, colonoscopy isnt always enough to diagnose digestive issues

I would try to treat it in order to reduce overall inflammation
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Age:23. Onset of symptoms: september 2020.
Curve mostly semi erect about 60 degrees, slight pain
Tried short & prolonged fasts, keto,carnivore, traction and most of the supplements.
Severe digestive issues, probably an autoimmune disorder

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #6 on: June 23, 2022, 03:05:54 PM »

Hi there,

Here is a quick update on my situation three months after my latest post.

What I have been doing:

• daily traction (at least 1-2 hours daily)

VED therapy (20 minutes every day)

• supplements (amino acids: Lysine, Leucine, Phenylalanine, Valine, Metheonine, Histidine, Isoleucine, Threonine <=== 1 month; probiotic complex: 20 bn CFU per serving <=== 2 months); collagen <=== 1 month)

• Heparine (contatubex) <=== 1 month twice a day

• occasional drinking and smoking (as I'm about to graduate, there have been quite a lot of events so it's really hard not to attend. It doesn't seem to affect my Peyronies though)

Shortly speaking, I have visited a few more rheumatologists, trying to figure out whether I have a systematic disease or not. All of them concluded that even though some of my symptoms are common to some systematic disease, it is still not enough to conclude that I have a RA or any other diseases of this kind (Peyronies as an independent problem from this perspective).

Overall, the situation has improved and worsened at the same time. On the one hand, I have noticed that the curvature to the left has improved and is not as visible as before. On the other hand, it is not because the curvature has improved but actually because it has worsened. I have noticed that the long cord on the right side has become quite dense/tightened (no plaque for now?). Because of this tightening of the cord, the penis tilts to the right a the base and then tilts to the left at the top (if it makes sense???). As a result, I do not know whether I should be happy or sad. Something is definitely going on with the cord on the right side and I'm super paranoid about getting another plaque (I check it every single day).But then the curvature looks different now - not sure if better but very different. In fact penis looks quite skewed... I can share pictures if you want (provided the moderators approve it).

Well, as you can imagine, this whole story has substantially affected my sexual life and life overall. There is no way to speak of any sexual confidence anymore, it is just debilitating. In any case, I might be a bit embarassed but it's fine to speak about it being in this kind of situation - I'm sure you understand. So, I bought one of those 'realistic masturbators' whatever they call it to see if the curvature is going to affect sexual intercorse in any way. To my surprise, it was completely fine. Erection is quite alright even though I have multiple plaques on every side of the penis and tightening of long cords on two sides, at least. Erection is fine and penetration doesn't seem to be too bad. So, it has boosted my sexual confidence a little bit but then I'm a bit anxious about getting used to it a bit too much (becoming dependent on it) and potentially getting a injury (because I use it more often, at least twice a week as there is no inflammation or any problems afterwards).

In any case, the supplements I mentioned didn't help at all. I think the only thing that was really useful and helped in some ways was VED therapy. But now I'm a bit scared that VED might've improved curvature but then caused the tightening of the cord on the right side that I mentioned (highly unlikely in my opinion but I cannot rule it out).

I'm still totaly convinced that the rash that I've had over the past two years must be related to the cause of my Peyronies (I'm about 95% sure about it). For this reason, I have made an appointment with a dermatologist and going to have a second skin biopsy in early August. Hopefully, the biopsy will indicate the underlying problem (might be just a skin condition, infection or something else).

I will keep you updated
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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #7 on: July 19, 2022, 07:44:04 AM »

Hi there,

A short update here.

I had an appointment with my urologist a few days ago, we discussed my current situation and what I should do next. First, he told me that based on the pictures that I showed him there has been some good progress in reducing the curvature, even though there has been some worsening in other aspects. He insisted that even though I have multiple plaques and there is still some deformation, I should not abstain from sexual activity and should try again to have a relationship. Well, it's easier to tell than to do. In any case, he suggested that I should stop using Pentox (because it has not helped me that much and it doesn't seem to be very affective in the long-term, as per him) and instead could try Tadafil - to promote erections and boost confidence (especially because I've been having troubles with morning erections).

For this reason, I have been using Tadafil 5 mg daily before going to bed already for 10 days, which has promoted morning erections as well as erections thought the day. To be honest, it makes me feel good, in a way. We will see if the effect stays after I stop using it in a few weeks.

Second, I have stopped using quite a few of supplements (Pentox, Coq10, Vit E) and now going to focus just on Tadafil and perhaps L-carnitine and vitamin D. The reason for why I stopped using the mentioned supplements is because I do not see much progress. Even though I haven't developed new plaques (but perhaps there has been some new scarring? hard to tell), the cord on the right side has tightened causing curvature to the right, and the supplements don't seem to affect it in any way.

It's so bloody bizarre. There is some curvature to the right at the bottom of the penis and then some curvature to the left closer to the top + indentation. It looks almost comical, lol.

Finally, on August 3rd, I'm having an appointment with a dermatologist to have a second penile biopsy. I might be wrong but I believe that the penile skin condition that I have (which resembles lichen sclerosis to some extent) has caused or at least has contributed to me developing Peyronies. So, I want to get a definitive diagnosis on my skin condition and then perhaps try to treat it. Who knows, perhaps it will somehow affect my Peyronies. I do understand that it might be a bit of wishful thinking but, well, there is no way you could refute this logic anyway, first, and, second, I don't think second biopsy will kill me (i've already experienced the worst and another biopsy is just a mosquito bite).
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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

Paul80

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #8 on: July 22, 2022, 09:35:08 PM »

Hello, I have read that you have a plate just below the glans and that you use the traction device. no one told you that's not good because the traction device has the grip right where you feel the plate. And one question, have you ever had an ultrasound or an MRI to see exactly where you have the lesions?
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injury during sex in January 2022. note like a needle stick. result fibrosis nodule 7mm by 5mm oval. dorsal curvature 20 degrees, hourglass narrowing. currently cialis 5mg, pentox 400 once a day, and Ved therapy

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #9 on: July 23, 2022, 03:39:51 AM »

Well, the nodules are a bit below the place where the traction device grips. I think it’s more like scarring/hardening just below the glans. To be honest; I don’t think traction overall made it any worse but sometimes penis can slip which could potentially cause trauma. Even so, I’ve never had any pain or discomfort after doing traction so I’m not sure whether there’s connection between doing traction and the plaque/nodules below the glans.

Of course, my urologist did an ultrasound several times. Some scarring/hardening/nodules were visible in some areas but couldn’t be seen in some other areas. It’s not surprising as doing an ultrasound for Peyronies isn’t very accurate and quite often you can’t see the affected areas.
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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

bentoboy

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #10 on: August 29, 2022, 04:31:44 AM »

[Update August 29]

Regarding the second penile biopsy that I mentioned previously, I eventually got one. Two weeks ago I had an appointment with my dermatologist, who after a series of doubts and hesitations, decided to conduct a penile biopsy because there was a suspicious lesion close to the urethra (which might have potentially been a sign of LS or some other skin condition). Not sure if I should be happy or sad but the laboratory didn't find any problem with the tissue sample. Yes, there's some excessive collagen in some areas, yes, there's something else somewhere else but overall no obvious signs of any specific skin condition. Oh well, no solution found and now there's a black X mark next to the urethra (hopefully this bright red and sometimes even black colour will go away eventually). If any of the ladies ask about it, I'll tell that I belong to a secret society, lol.

Apart from the penile biopsy, I've recently started a combination of Restorex and VED treatment (Restores 15 minutes right-side bending + 15 minutes dorsal bending + 15 minutes Soma correct <=== repeat twice a day, in the morning and in the evening). As of today, I can't say there's any progress but I'm going to follow this routine for about a month. The reason for why I decided to follow this treatment is that I've recently discovered that I lost some girth (around 1 cm) since May 2022. It actually coincides with when I stopped doing traction and VED so now I want to restart this routine to see whether I will regain my precious girth or not.

P.S I have also started taking new supplements: milk thistle (twice a day) and glucosamine, chondrotine & MSM (for my joints; also twice a day).

On the bright side: I've recently bought an electronic piano to regain my lost skill (used to play for a few years years ago) also hoping that it would boost my mental health and help to focus on something else but my genitalia. I should say that it was a good decision to make as it has really improved my mental health and gave me some feeling of purpose, so to speak.

Also, I've started reading My autobiography by Charlie Chaplin and would definitely recommend this book not only to anyone interested in the history of cinema but also to anyone struggling here. I find it really interesting and inspiring that the man also went trough some tough life experience (not really an illness like in our case but still quite debilitating), with ups and downs, successes and failures, but then persisted anyway. I like how he sees all human lives, irrespective of the specific circumstances, as intrinsically meaningless, miserable and painful in some ways but then it's our role to persist and keep on going whatever sad fate there is destined for us (sorry for the dramatic part). The point is that I find all these autobiographies and philosophy very soothing and calming (in some ways) as every human being goes through this pain and suffering at some point in his life and the objective is to do your best to accept this suffering because there's no way out of it (provided you accept the premise that suffering is part of the human condition)

I really like this Chaplin's quote: “LIFE IS A TRAGEDY WHEN SEEN IN CLOSE-UP, BUT A COMEDY IN LONG-SHOT.”

This one is quite good as well: “LIFE LAUGHS AT YOU WHEN YOU ARE UNHAPPY. LIFE SMILES AT YOU WHEN YOU ARE HAPPY. BUT LIFE SALUTES YOU WHEN YOU MAKE OTHERS HAPPY.”

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26 y. o. Peyronie since 2020: upward congenital curvature from the bottom - 20*; twist and curve to the left - 25*; two visible dents on the left side; multiple plaques everywhere; no pain

Vitamins; Tadafil; traction/bending; VED - nothing worked

LWillisjr

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Re: Agressive peyronies / multiple plaques / autoimmune disease?
« Reply #11 on: September 01, 2022, 10:08:39 AM »

This thread has reached its limit of 10 posts as an introductory post. Please feel free to continue posts or discussions in other respective boards on the forum.
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Developed peyronies 2007 - 70 degree dorsal
Traction/MEDs/Injections/Surgery 2008
66y/o  14 years Peyronies free
My History
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