Agressive peyronies, multiple plaques

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bentoboy

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?  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

Sonic

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.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

bentoboy

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  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

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
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

Sonic

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.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

bentoboy

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  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

Sonic

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.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Bud luck

 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.
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 ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Curvekiller94

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.  
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

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  
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

 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
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 ED is getting worse
Had a PRP shot Aug 2021
I have a girlfriend
Age 46

Sonic

@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.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

bentoboy

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
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

ohnoohno

I agree it's definitely a shame we don't know what's working or what's making things worse...

I feel like mine got worse after taking cialis and VED for a while, so I kind of stopped and then it seems like it got worse then too so now I'm starting up again...

Did some VED and manual stimulation this morning to just get hard... It looked OK but I got up and pictured if I was about to have sex how would I do and I definitely turned flacid quick after no stimulation... Fantastic haha... All I can think of now is, I'm going to get an implant and just get this thing out the way and until then I will be open to meeting girls and just try pleasure them for the most part...

Little rant here this evening but I haven't told anyone in real life about this as I CBA for anything that comes with it... Thank god for this forum!

 
29 y/o diagnosed 13 Jun 22.

went from a slight 30dg bend at glans to whole thing being deformed/loss of length over a year.

trying to find a way out of this all

Sonic

Quote from: ohnoohno on February 13, 2023, 10:13:28 AMLittle rant here this evening but I haven't told anyone in real life about this as I CBA for anything that comes with it... Thank god for this forum!

Me neither. I really have no one to tell it to either except my dad or older bro and there's no way in hell I mention something of this subject to either. However, if I do reach a point of being implanted then I will have to tell...
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

LWillisjr

Quote from: ohnoohno on February 13, 2023, 10:13:28 AMDid some VED and manual stimulation this morning to just get hard... It looked OK but I got up and pictured if I was about to have sex how would I do and I definitely turned flacid quick after no stimulation... Fantastic haha... All I can think of now is, I'm going to get an implant and just get this thing out the way and until then I will be open to meeting girls and just try pleasure them for the most part...


Your mental state has a lot to do with your ability to achieve an erection and perform sexually. Don't know if you are struggling with anxiety or stress. An implant will keep you erect, but it won't solve anxiety and/or stress.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

ohnoohno

Likewise Sonic, I don't really want to have the convo with my brother... But if I did get a bionic penis I probably would yes but it'd almost be more positive convo than if I told them now that I just have a messed up pp, if I was getting the implant least I could say I was getting a bionic pp

LWillsJR before Peyronies I had no issue with any performance anxiety in getting it up etc, maybe my mental is messing with it now though... Hard to tell.. I did wake up with decent morning erect today, have been using ved and cialis so just going to keep doing it..

 
29 y/o diagnosed 13 Jun 22.

went from a slight 30dg bend at glans to whole thing being deformed/loss of length over a year.

trying to find a way out of this all

bentoboy

Hi there,

19 March update: to keep it short, I do not  think  the  anti-oxidant supplements changed anything. To the contrary, the only thing it did was to occasionally upset my stomach. The cream that I had ordered from the US also did not have any positive  effect on my condition. I used it for several months and to no avail.

I stopped taking most of the supplements mentioned above and just focused on traction and VED instead. I moved to a different country, to a new appartement (no flatmates), so can now  focus on traction a bit more.

Overall, I do not think much changed over the past year. I got a  new lump on the right side, but it does  not seem to be causing much trouble (maybe just a bit of narrowing - for now). Maybe there are a few potential issues:

1) The cord on the right side tightened substantially causing my penis to tilt to the right. I asked my urologist to do an ultrasound, he did  it but didn't see anything.  The fact is  that  the tightened cord causes some deviation. Not sure what  to do with  it, as there is  no visible  presence of  plaque, and I do not know what kind of therapy could  improve it. Maybe it is not even Peyronies but some other kind of a connective tissue disease? I also noticed that  the veins on the left side, close to the cord, also enlarged. Not sure whether  I should  be worried or  not  

2) In some areas, plaque became less dense and in others denser. Now I can clearly see some mild hourglassing  (maybe I am wrong but this is my observation).

Other observations:

-  I am not sure what a hard flaccid means but I suspect I might have it. From time to time, when my penis is flaccid, it is quite  hard and not  very flexible. If I put  it to the left side in my underwear (knowing that the cord pulls it  to the right) and keep it like that for  a  few hours, then penis looks almost like it's broken and  then gets back to 'normal' within a minute or so (if it makes sense).  

- I also re-started doing a heat therapy. I do not  have any pain whatsoever and can have sex, for your  information. Although, I noticed that heat makes  my penis more flexible and, I assume, softens the plaque, even if for a short  period of  time.  

- I don't have any pain but rather a mild discomfort, especially when I  wear something tight  like jeans. I think in  that case it makes my penis  bend, which causes some discomfort.

Regarding my mental state, I am holding up well. I have got a really good new job and moved to a different country, to a new city (which is quite beautiful), which really helps to keep my crap at bay. I also had sex a few  weeks ago (which does not happen often), and it was more or less fine. I really appreciated that the lady did not ask any questions and maybe not even noticed it (not sure about it though).

The only problem  is that I still have no confidence when it comes  to penetration (other things are fine). I have this constant anxiety, which does not  seem to  be affecting my libido though,  about not being capable to have as good  performance as  healthy men. All my life I have been  striving for excellency in all things (thanks perfectionism), but the fact that  I cannot be  excellent in bed really puts  me down and discourages from sexual encounters. I guess many of you have the same problem, don't  you?

I am also attaching a few pictures in case you are  interested what kind of deformity I have. All comments are appreciated.


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27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

Detlefi62

Hi I just want to give you some support. Looking at your pics. I don't think that this kind of curving should give you any anxiety or stress with women to have intercourse. If you can handle the pain( if you have it) during intercourse then you should be fine. it looks it is more upwards that is actually not such a bad thing ( g-spot). Mine is also very upward bending and my wife actually doesn't mind it at all. I understand that the change of your cock makes you way more uncomfortable than someone who looks at it and sees it the first or second time. However I hope issues improve. I hope mine too , but I am older and I can only hope that it is not getting worse or it goes away. Taking many supplements and doing daily VED currently , but have not seen any improvement. Will know more in a couple of month.    
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beaulieu1008

Hi Detlef
Could you describe your curve?
Thanks  
60 years old. Peyronie disease since 2020. Upward curve 30 degrees. Thick calcified plaque, dorsal, just beneath glans. 2cm wide, 1cm long. No ED. Except soft glans.

LWillisjr

I agree that your deformity is not bad, and should not cause any problems. I have to ask how long as your erection been this way? I mean how much of this could be congenital?
 
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Sonic

Your shaft is pretty much entirely straight. It's just your head that's curved. I would estimate it to around 10° curve.

Do you have ED? If not I would not worry about a thing. Keep going with the traction. There is a possibility it might straighten the bend of your head if you do it consistently for a long time.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

bentoboy

Thank you for your responses gentlemen, it's much appreciated

In  fact,  my  curvature used  to be much worse - about 30 degrees to the left (at  least). I'm not sure about it but I think  getting more plaque kind of helped it? My theory is that because I got lots of plaque on each side it kind of straightened the curvature  a little bit. Plus a combination of RestoreX, traction and VED maybe helped as well.

As of now, sex is completely fine. Recently, I even had a  bit rougher sex, which was not safe at all (in terms of  making Peyronies worse; on top position), but I managed it  quite well and I didn't have any pain or any problems whatsoever (the flame of passion got me blinded, khem). Anyway, it's a good idea to be  a bit more  careful of course...

@LWillisjr well, I have Peyronies almost for three years, I believe? Initially I had plaque only on left side which caused maybe 40 degree curvature but improved over time. And then I kept on getting more  and more plaque which caused nasty dents. In the last year, the condition  more or less stabilised in the sense that the curvature hasn't been worsening. However, I've been getting more  plaque and 'toughening' of the cord on the right  side, which doesn't cause  any problems as of  now (hopefully it stays  this  way).

@Sonic the dents  on the left side cause  this  curvature. They  are not that visible but still quite annoying (plus  it  used to be worse before). It depends on  what you mean by Erectile Dysfunction. I haven't had normal a morning wood for quite some time (for years), which is really concerning. However, my urologist said that it's completely fine and it doesn't mean anything (almost). With 5g tadafil, I have  great  sex and it's more than enough to have good time. However, I am yet to find out yet how good the erectile quality is without it. Masturbation is fine, I don't have any issues, and  the erectile quality is okay most of the time
 
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

There are only two really concerning things: first, the cord has been toughening more and more which also caused a bit of curvature and, second, the veins on my penis sometimes 'inflate' for  no reason. It looks fine when the penis  is erect but when it's flaccide, these expressively enlarged veins look so bizarre (I freaked out quite a few  times to be honest). I assume it might somehow be related to high pressure. Over the past few months I've occasionally had really red ears for some reason  (when I  do sports, when it's cold, when I drink, etc). So my assumption is that it might be high pressure (???) and maybe it inflated the veins on my penis too. If you have any ideas, it would be much appreciated  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

The condition has been worsening. Apart from lots of plaque on the left and top sides, I got a new lump on the right side last September. Lucky me it didn't cause any curvature or any other kind of deformity. Now I noticed that this lump has solidified and maybe even become bigger. And now I can see that there's some hourglassing... almost a year passed and only now it has started causing some deformity.

I also noticed that more tiny lumps started appearing in some places, especially next to some old plaque. It is horrendous and causes such a massive anxiety - like it is a disease with no chronic stage. Like all those articles about active and chronic stages are pure nonsense, and in my cases the disease will be progressing until I lose my genitalia.

Also, I have never had any propensity for suicidal thoughts or anything like this. Even now the idea doesn't appeal to me and I believe there are always solutions. Still, I have had occasional dreams about commiting suicide which is not a good sign at all... almost like my brain is considering this opiton unconciously.

Overall my erection is fine and I can have sex. However, with the old plague progressing, I am wodering whether I will be able to have sex in the future. To minimise the possibility of worsening of this developing hourglassing I have re-started doing traction, VED, Restorex and now going to start taking Tadafil again. We will see... I have also started doing monthly water fasting and going to do dry fasting late June, once I have some time.

The problem is also that I also have quite a few paralel issues - weak stomach, joint pain, kidney stones, some deficiencies, eye problems etc. - and I think they must be inter-connected. However, I have been struggling with this for 3 years already and I haven't found any connection, while doctors know nothing. Meanwhile Peyronie's is progressing.

I have been thinking about the possibility of getting an implant. In my case, it doesn't seem like I will have a 'stable' or 'chronic' phase at any point, and the condition seems to be worsening non-stop. So I thought that maybe I could get an implant at some point and have it until there's a legit treatment.

 
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

I have been trying to have a very healthy lifestyle with lots of sports and balanced diet. However, it seems that I keep developing plaque during these 'healthy' periods and when I go through 'unhealthy' periods - meaning excessive consumption of alcahol etc. - the condition does not seem to be worsening but sometimes even seems to improve.

I have developed so much plaque but still don't have any pain and erectyle quality doesn't seem to worsen. The only significant worsening is still emergin hourglassing which is very concerning.  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

July update: the condition is worsening. As of now, I have plaque/lumps/scarring on every side. If the lumps were causing some nasty dents on the left and top side before, now it is somewhat a similar thing on the bottom and right sides.

Bottom side: there is a small lump right in the middle. It is palpable and it is easy to find it, small-sized and quite hard. It causes slight deformity and even though the angle did not change one could see that the surface is not even but slighly bumpy. It should be fine as long as it does not cause erection problems.

Right side: in September 2022, I developed a bump on the right side all of a sudden. It did not cause any deformity but was there for a year, quite solid but not affecting anything. About a month ago, I realised that this lump caused a small bump (after a year!) so I started doing traction and VED, which maybe minimised the deformity to some extent? Apart from the lump, there also was hardening of the big cord on the right side. There were no lumps on it, it was just super solid causing a slilght tilt to the right. Now, I can feel some scarring on the cord and arround it. When I was doing VED recently, I realised that this hardening of the cord does cause a dent but on the bottom side (which I had not notice before). Plus this dent is mostly visible when I do VED. When I have sex and have 100% erection, it is not visible. Because my penis is 'twisting' to the left, I believe that this dent is not completely caused by lumps but rather by this twist (which is also caused by the lumps on the left side) accompanied by the recently developed scarring.

So, just a few months ago, I was happy that the condition did not affect the right side and I was hopeful that the condition had stabilised. This is not the case clearly. Now I have plaque pretty much everywhere and I expect that there could be some hour-glassing as a result. I do not have it for now and my erection is fine especially with Tadafil.

At this point, I do not really know what to do. Three years into this disease, and it keeps on worsening and worsening. It does not seem like there is anything to prevent me from developing new plaque. I did not have sex for two years - developing plaque, I was doing all available physical therappy and medications - still developing plaque, I started having sex - still developing plaque. I think once every inch of my penis will be covered with plaque, the new plaque will be growing on the old plaque, lol. Well, hopefully not

I am convinced that my Peyronies is related to my unknown underlying condition. I suspected that I might have had an autoimmune condition but it was not confirmed. Although, my doctors did say that knowing my symptoms I could have it or maybe I am developing it right now.

Apart from peyronies, I have nasty problems with my joints in other places (knees, elbows), which proved to be to persistent and no treatment helped so far. On top of this, my eyesight has been substantially worsening (going to have an appointment in a month) and my mental capacities are not as sharp as they used to be. At this point, I am just slowly developing an illness anxiety disorder (managing quite well though), believing that an autoimmune condition is the cause and I could even develop some brain issues unless I find a solution to the underlying condition (like multiple sclerosis or something like that).

In any case, I am not considering an implant at this stage. Even though the deformity is quite nasty, I can still have sex and my erection quality has not gone down. My concern is not with my current condition, my concern is that I will keep on developing more and more plaque until I lose my sexual function because it has been the trend so far. Three years into the disease, and it is not getting better but worsening. I had interminent stabilisation every maybe six months but it is a temporary thing. I can clearly see that the cycle repeats over and over again (early scarring, small lump, solidified hard lump, dent stage) even though I have no pain, inflammation, trauma, whatever. Even when I did not have sex for two years while also following a very healthy lifestyle + physical therapy + medication, the result was zero, the cycle still repeated.

If this substantial worsening happened in just three years, I am afraid to imagine what will happen in five years. Of course, there is no bloody way to know but the point is that this mere thought causes anxiety. And of course I cannot stop thinking about it as it directly affects my wellbeing.

Thank you  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

September update

Penimaster pro: I bought myself a penimaster pro believing that it might help with the new dents that I have developed recently. I use a strap to stretch the penis in the opposite direction of the newly appeared dents. It feels good but no change so far.

Recent blood tests: I did a full blood test last week and discovered something interesting - just like two years ago when my Peyronies was at its worst, I have low concrement C3 (but then C4 is fine), which means that I might have some form of an autoimmune disease, potentially. Also, my blood sugar levels seem to be fine but not perfect (just like two years ago - close to the upper threshold, so to speak). I suspect that I might have a mild insuline resistance (maybe).

I consulted a GP regarding the blood test results, and he said that it does not look to be too bad but a bit bizarre, as one does not often get low C3 but then more or less normal C4 (although it's close to the lower threshold). So I assume it's not inherited but both C3 and C4 are lower because some underlying conditions is causing it (C4 is within the normal range still).

Now I am planning to have an appointment with an immunologist to figure out why I have problems with the autoimmune markets. To be honest, the fact that I have emerging problems with glucose levels (upper threshold two years ago but somewhat better now) as well as with the mentioned markets would explain my Peyronies. Because before I developed Peyronies I had had problems with penile inflammation (which could not be diagnosed quickly and was unrelated to STDs), which also later caused problems with joints, harmone imbalances and chronic rhinitis. In any case, this would explain the fact that I have been in the chronic phase already for several years (although there were periods when worsening temporarily stopped).

Recent worsening: irrespective of the fasting and other things I have been doing over the past months, the condition worsened. I think it was especially worsened by an accident which happened a few months ago: I was doing traction with Restorex, and I opened the clamp by accident - so the penis rapidly contracted, and I assume it caused some damage as a result. There was no pain but I noticed new dents a few days afterwards.

The biggest problem is that there is this new dent at the base of the penis on the right side. Some time ago, the right side was completely unaffected (just a small lump in the middle section which didn't cause any problem though) but then Restorex reactivated it, which caused more deformity. Even though the right side wasn't affected, there was this so-called 'cord-tightening' on the right side, which caused mild curvature to the right, which I didn't really mind. But after the Restorex accident I noticed that there was some plaque ON THE CORD. I mean what the hell. Anyway, it caused a dent I believe. So now when I do VED exercises I can see that the area at the base on the right side doesn't fill out anymore.

I haven't measured my penis for months, but when looking at the recent pictures I can see that I have somewhat lost some penile size - which is quite unpleasant to say the least.

 
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

bentoboy

Also, I've just seen a comment by Dr Trost saying that he has had cases of people developing massive plaque covering most of their penile tissue (which is also calcified most of the time). I wonder whether I am going to be in a similar situation, as a substantial part of my penile tissue is covered with plaque - dents on each side, size wasting and plaque in multiple places.  
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

Sonic

Sorry about all you are going through it sounds like one of those very mysterious cases. Honestly based on what you have written I would scratch traction all together as I see you have done it for quite some time with no improvements and only worsening. It could be that you are one of those men who react bad to traction. I would get a pump with a pressure gauge if yours doesn't have one already and pump to the ''safe limits'' and follow the forums protocol.

At least by this way you are constantly filling the penis with blood which is crucial. Sadly traction is not for all. I have read many cases where a group of men sadly get bad reactions even when doing it ''lightly''

You could try get a more narrow cylinder in an effort to try straighten it out a bit with the pump as well.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

bentoboy

Quote from: Sonic on September 18, 2023, 07:55:07 AMSorry about all you are going through it sounds like one of those very mysterious cases. Honestly based on what you have written I would scratch traction all together as I see you have done it for quite some time with no improvements and only worsening. It could be that you are one of those men who react bad to traction. I would get a pump with a pressure gauge if yours doesn't have one already and pump to the ''safe limits'' and follow the forums protocol.

At least by this way you are constantly filling the penis with blood which is crucial. Sadly traction is not for all. I have read many cases where a group of men sadly get bad reactions even when doing it ''lightly''

You could try get a more narrow cylinder in an effort to try straighten it out a bit with the pump as well.

Hi there Sonic,

Thanks a lot for your support, it's much appreciated.

Honestly, I am not sure whether I should stop doing traction. Over the past months, I have been doing it only occassionally and I cannot say whether it affects me in any negative way. I've never had any pain or discomfort whatsoever. The only problem is when the penis 'slipps out', which, I assume, might cause some damage. But then again there is no way to measure it... How will I know that traction is actually not good for me? I have no clue.


Regarding VED, I have been using SOMA correct for quite some time. Recently, I've been using it ony for 15 minites every other night. I'd say I pump the penis to 100% but then never had any pain or problems (I know that many people advised against it, but in my case it doesn't do any damage).

Hm, I have been using the meddium cylinder so far. Not sure whether the narrow one will do but I will try.

Thanks for the advice
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.

Hopewell

Any news mate ?

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bentoboy

Update since September 2023

Auto-immune condition: I previously assumed that the main cause of my Peyronies was some sort of an autoimmune disease. Now it does not seem to be the case, as I recently had an appointment with an immunologist (who did a long list of various blood tests) who said that there were no signs of me having an autoimmune condition, at least for now. Plus, some of those inflammatory markers that were previously elevated seem to be normal now (I have been taking some supplements and normalised my diet - so maybe that is the reason). However it is a good thing, now it looks like I developed Peyronies and a bunch of other problems (problems with inflammatory markers; issues with joints; brain fog; blocked nose, etc.) at the same time.

New plaque and hourglassing: in September 2023, some plaque started to appear on the right side of my penis, which used to be intact, and the tissue was completely normal/flexible. Since September, it has been somewhat worsening with the recently formed plaque getting a bit bigger. As I have quite a lot of plaque on each side, this new plaque joined forces with the old plaque whereby causing some mild hourglass deformity.

Last week, I had an appointment with my urologist. He did an ultrasound and checked the old and new plaque. He confirmed that I had quite a bit of plaque everywhere - left side (the longest - 8mm), backside (4mm), frontside (quite a bit in multiple places), and then right side (one lump just for now).

Veins: in addition to the 'tightened cords', my veins on the front and right sides have enlarged substantially. Most of the time, you can see them being enlarged when the penis is flaccid. But then oh boy, sometimes they get quite big - almost to the point it looks almost like there is a new dent there (it looks so bizarre that you just start imagining things). My urologist said that the veins seem to be fine though, with no visible problems whatsoever.

Supplements: I have been taking Berberin 500 mg and NAC 600 (I also occasionally take gingo biloba) for about a month. For now, I cannot see any changes/effect or whatever. It neither affects me negatively in any way nor improves my condition.

Exercises: I stopped using VED, as the bloody thing broke down, and I do not have too much free money right now to order a new one. Instead, I have decided to do about 40-60 minute Restorex traction sessions with occasional bending sessions for about 20 minutes.
 
27 y. o. Peyronies since 2020: S curvature with the top part tilting to the left - 15*. Multiple nodules and scarring on each side, mild hourglassing. Getting worse every few months, losing width. Normal penile function. Enlarged veins.