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Author Topic: Agressive peyronies, multiple plaques  (Read 577 times)

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bentoboy

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Agressive peyronies, multiple plaques
« on: September 27, 2022, 06:43:14 PM »

This is just a continuation of this thread ===> https://www.peyroniesforum.net/index.php/topic,17403.0.html

September 23, 2022: Six months after getting my last plaque, I have recently developed another one (this is my 7th one perhaps?). To put it short, I have been doing 1 hour Restorex sessions (30 minutes - morning / evening) combined with Somacorrect VED (15 minutes - morning/evening) plus occasional traction (either Restorex or extender) over the past month (just to see if this combination of treatments could help somehow). I had no pain, no discomfort whatsoever - both counter-bending and VED felt good when stretching the tissues. However, just a day before my birthday (*noises of irony*) I noticed that there was something wrong with the penile tissue somewhere in the middle part of the penis (dorsal part). The following day I could easily feel a small bump under the skin, which didn't hurt or anything. Oh well... The problem is that there's no way to know what caused it: it can be one of the therapies or it could be something else.

[Joke] At this point, it's really hard to surprise me – if I wake up tomorrow's morning and there will be a Russian military base on my genitalia, I wouldn't be surprised.

That's super bizarre that exactly the same thing happened to me last year when I developed one of the biggest bumps which now causes a dent on the left side. It appeared out of thin air: I had a very healthy lifestyle, no mastrubation/no sex; no bad habits except for an occasional glass of wine on Fridays - and then you get quite a solid plaque that causes quite a substantial deformity. It just doesn't make any sense.

On the bright side, the following day after discovering the recent bump (which doesn't cause any further deformity as of now, plus I hope that Restorex + tadafil will help to minimise any potential deformity) I went to France with a lady for the holidays. To be completely honest with you, it was the first time I had sex since 2018, the year when I had got serious health issues and consequently had developed Peyronies (I had had a pretty bad case of depression and so was trying to abstain from sexual intercouse at least for some time). Surprisingly, my deformity doesn't seem to be affecting my sex life that much. I'm really surprised as I have developed quite a few bumps and a lot of plaque on each side of my penis but some of it doesn't seem to be affecting my sexual ability at all.

I was quite happy to discover that I can still have sex and my deformity doesn't seem to be a big bother to the lady. However, I'm quite concerned that my deformity might worsen over time (no pain whatsoever) because, well, at some point she was on top of me and sometimes the penis occasionally turned and twisted (especilly when losing firmness of erection), I was trying to be extremely careful realising that this position is the worst one in terms of Peyronies (but it went quite well; no pain). I mean I still have this fear of sex as a potential trigger for worsening of my penile condition. Knowing that I have so much plaque and also bumps, every uncareful movement might cause inflammation and thus more problems.

Need a piece of advice: even before developing Peyronies I had occasional problems with my erections. I mean it's completely fine overall, my erections are quite strong (even without Tadafil) but every time when I move, change positions or have to move my penis (for example when a lady is on top and then I need to 'direct' my genitalia) I gradually lose my erection. Honestly, I cannot figure out whether it's because of some anxiety, anatomical features or some form of "partial Erectile Dysfunction' (venous leak or something like that). Have you experienced the same problem?
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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

Sonic

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Re: Agressive peyronies, multiple plaques
« Reply #1 on: September 27, 2022, 06:57:52 PM »

You should perhaps do an erect US if you havn't already to rule out any possible problems with blood flow.

Be very careful with girl on top. It's of great importance you do it in positions where you are in control.

Perhaps it would be wise to also cut down a little on the traction and VED or possibly just use one of them. Letting the penis rest maybe will help you more, honestly idk. One thing I can give advice on though, you said you are worried it might get worse the deformity.

Live in the now my friend. If it gets worse you can go for surgery, I know that's not ideal but it's always there as an option when things get so bad there's no other choice. For now just be careful and assess day by day.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

bentoboy

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Re: Agressive peyronies, multiple plaques
« Reply #2 on: September 28, 2022, 08:41:18 AM »

Hi there Sonic,

Many thanks for the response.

Yes, I think it's a good idea to do another ultrasound just to rule out any possibility of venous leak or any other problems that I might have. The only concern is that the doctor will have to do an injection which might potentially cause more damage (hopefully not).

I also share this viewpoint and thus I've recently stopped doing VED and focused on RestoreX and traction instead (just a bit of traction though). I might restart VED once the newly appeared plaque stabilises.

Thanks for your advice, it's much appreciated! I don't worry too much about it anymore but it'd be nice to have some kind of 'stability' (without new lumps appearing every now and then)

Cheers
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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
« Reply #3 on: November 07, 2022, 05:06:54 PM »

Honestly, I am so tired of all this crap. I just do not understand where it is going. One day the curve does not look to be too bad, and some other days it is just completely twisted, curved in two opposite directions at the same time. It does not make any sense whatsoever.

I have been almost three years into this disease, and there is no F^@$!ng stabilisation. I just keep on getting more and more plaque, while the dick just gets curved in two opposite directions at the same time, lol.

Recently i had sex for the first time in three years, and you know what? I do not enjoy it anymore. Even though sex is possible, there's always anxiety. Plus it just does not feel as it used to.

Moreover, you do all this hard work to improve the condition - traction, bending, VED, medication, hand traction, fasting, etc and it does not do crap. it's much easier to cut one's dick off and go to a monastery ffs.

If in my mid-20s the condition is getting so bad, I can imagine how much I will struggle in 20 years, being left alone and miserable with this stupid condition which does not make any sense whatsoever.

Instead of focusing on hobbies, studies, relationships, you just think about for how many minutes you will do all those therapies today
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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

Sonic

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Re: Agressive peyronies, multiple plaques
« Reply #4 on: November 07, 2022, 06:48:53 PM »

Sounds like I am reading something I wrote myself.  ;D

Seriously, same thing happens to me. One day you look at a full erection and think, hey that's not so bad, in fact it looks improved and the day after it looks like someone is standing on the other side pulling on your dick with an invisible rope it's bending that bad...

For me it will be 3 years in the upcoming summer. Over 2 years ago I got it and it has not stabilized for me either, I was 26 when I got it, never heard about the disease prior to getting it, had zero knowledge about the thing even existing. I thought the only penile injury a man could get was fractures.

Never once did I know there was a disease that suddenly makes your penis eat itself up. It's affected me really bad too but have no choice but to keep on fighting and going on with life because much worse things have happened in my life so I've learned that life sucks but you gotta keep going.

For me it's not the disease that's the worst, it's the fact that there is practically jack crap the medical industry can do about it and very few options of self rehabilitation that are strongly proven to work. It's 2022 and the most operated procedure it still plication. A dreadful "solution" imo. Permanently ruining and shortening the HEALTHY side of the penis to match the SCARRED side...

Other option (excision and graft) gives Erectile Dysfunction. What a great option. I seriously hope they one day can find a good alternative cure for this because as it seems right now an implant from a top surgeon seems the most reliable option but thats a very complicated procedure.

Visited 2 "Peyronies experts" in my home country and I've gotten far more help from random men on here..

At first when I joined this forum it was to get help, gain more knowledge about the disease and find different treatments. Now my main goal is to try help others, especially new young men who have gotten diagnosed and joined the forum to not go down the same route as me. Draining yourself mentally like I did will only make things worse.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

bentoboy

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Re: Agressive peyronies, multiple plaques
« Reply #5 on: November 08, 2022, 04:57:35 AM »

Hi there Sonic,

Thanks for your response, your insight is much appreciated.

It just does not make sense that in some people Peyronies never really stabilises, getting worse or better depending on some unknown factors. There’s this common opinion among urologists that the condition stabilises within a year and then you’re good to go - although it’s not the case for many people, unfortunately.

Initially, before my Peyronies started, I had had  this fear that I might’ve had Lichen sclerosis. It was quite scary but then I thought to myself, “oh, well, at least it’s not Peyronies, it’s not too bad as of now”. And then I basically get Peyronies, lol (*ironic noises*)

It’s the same thing for me. I don’t mind Peyronies as long as there’s some treatment, anything I could do to improve it. But when you learn that there’s nothing to do about it, you just despair

And your contribution to the forum is very valuable. Many young people here do require some help and assistance, and it might substantially help not only psychologically but perhaps even physically. If I had joined the forum and started the treatments much earlier, who knows perhaps my condition would have been completely different.

I don’t despair but I’m so angry sometimes. It’s just so unfair and so unjust to have people go through this nightmare, experience all this nonsense. It’s just cruel
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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

Sonic

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Re: Agressive peyronies, multiple plaques
« Reply #6 on: November 08, 2022, 05:27:07 AM »

You can take comfort in the fact that you can sign in here anytime you want, a place where men all across the world with this condition have gathered to talk. I do not know if I am just extremely unlucky but I have gotten a lot more knowledge and help from people on this forum than the urologist visits.

It took me nearly 2 years to go seek medical help and after all my medical visits it was like I never got any help in the first place and had already gotten all the info I needed from this place. Perhaps the problem lies with the garbage doctors here, I hope other people across the world had better experiences than me.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

Bud luck

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Re: Agressive peyronies, multiple plaques
« Reply #7 on: November 08, 2022, 11:45:49 AM »

 Sonic, I went to top 'Peroynes experts' in the USA and Spain and they didn't help at all, our condition is not top priority for the Urologists, we are on our own.
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My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Curvekiller94

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Re: Agressive peyronies, multiple plaques
« Reply #8 on: November 13, 2022, 01:23:28 PM »

Yeah the specialists I’ve seen are far from “specialists”. I think it’s an oxymoron to call yourself a specialist in a disease Where there is so much unknown. It’s like saying you’re the worlds best time traveler when no one can travel in time. I don’t know how to actually travel in time, but I’ve studied it the most… okay great?

Me: So you cannot fix me?
“Specialist”: nope but I can do an experimental injection with “successo rates” nearing 50%it’s like a coin flip might make it better might make it worse.
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28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Curvekiller94

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Re: Agressive peyronies, multiple plaques
« Reply #9 on: November 13, 2022, 01:27:12 PM »

The only hope I have unless my dick miraculously one day recovers. Is an implant however that doesn’t fix my penis pain there is just a hunch it will it could make it worse.

I still will likely get one I am losing my sanity by the week once my employee health insurance kicks in I will be continuing to speak with dr. Eid this time for an in person consultation. He has been the only person who has actually offered me a solution not something that will garuntee make your dick shorter and isn’t garunteed to prevent future curving
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28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Bud luck

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Re: Agressive peyronies, multiple plaques
« Reply #10 on: November 13, 2022, 04:34:34 PM »

 You are right, the only thing that does something is an implant, it is what it is, but I just can't have plastic tubes in my penis, I'm just accepting my hard reality
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My first symptoms started early in 2019
I tried Traction device, Pentofixiline, Q10, TRT, L-Argenine, cialis
I have narrowing/dent/hinge on the left side of my shaft
My Erectile Dysfunction is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Sonic

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Re: Agressive peyronies, multiple plaques
« Reply #11 on: November 14, 2022, 10:47:22 AM »

@Curvekiller

If you live in the states and have access to Dr Eid then honestly go for it. I have not heard anything but positive opinions about him. I think he's the most experienced implant surgeron in the world especially when it comes to Peyronies patients. If I lived in the states and had the money I would without a doubt want to do the implant surgery by him. I think you would be very satisfied if you did so, and regain confidence.
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28 years. Started to develop a rightwards curve in June 2020.
narrowing on right side and about a 20-25° curve to the right.
Weakened erections and instability due to narrowing.

bentoboy

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Re: Agressive peyronies, multiple plaques
« Reply #12 on: January 08, 2023, 02:28:27 PM »

It's been long time since my last update, and I've finally found some time to write another post.

First of all, happy new year and happy holidays everyone! I hope this year there will be more progress in battling this condition, and there wil be more people who will finally be free of this terrible disease. Let's have some hope and try to be a bit more optimistic and persistent this year.

September 2022: I had sex for the first time in about three years, since I developed the condition. As you can imagine, I was quite happy about it and even relieved that I can still have sex even though my penis is skewed, twisted etc. However, it was a bit more complicated than just having sex and enjoying my time. A day before I had sex, the nodule on the right side of my penis had enlarged, expanded for some reason. It basically became bigger and more solidified - maybe even calcified (I am having an appointment with my urologist in February to find out). Even though it is quite big and solid, it doesn't seem to be causing more curvature. Nevertheless, I suspect that it slowly shrinks the top part of my penis. Why? Because there's also some plaque on the left side and on the top side. I think that the plaque, nodules on the sides are slowly coming together, joining, merging - whatever you call it. 

December 2022: apart from continuing my usual rutine (VED, traction, various creams + supplements), I start taking daily cialis to improve my erections and stretch the tissues. Honestly, from all medications that I have used over the past years, Cialis has proved to be the most useful one - promoting good erections (which also contributes to mental health) and stretches tissues very well.

I also decided to do some form of an antioxidant therapy by taking propolis, ginkgo biloba, omega-3 and milk thistle. I have been taking them for a few weeks so far. I do not know whether they have improved my condition in any way but at least I don't have any side effects. We will see how it goes.

To be honest, it is still hard to know what helps and what makes my condition worse. Sometimes my penis looks quite good, and the plaque is quite  soft and more flexible. But sometimes the penis looks more twisted than usual, for some reason.

I also ordered a cream from the US, which consists of the following ingredients:

Shea Butter ……..1g
Coconut Oil …..1 g
Hyaluronic Acid …………..400mcg
Vitamin E………………….400mcg
Copper Peptide GH-CKU …….50 mcg
Body Safe Fragrance
DSMO …………………………. .5ml
Glycine ………………………… 400mcg
L-Arginine……………………400 mg

I have been using it for a few weeks and cannot say whether it has helped me in any way. The only thing I can say is that I have been using it twice a day and it may potentially help with inflammation. It feels good to apply it after masturbation but of course I'm incapable of finding out whether it actually reduces inflammation or not (just assuming). I will keep you posted on the results as I'm planning to use this cream for two more months.

That's it for now, thanks for reading
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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
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