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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: My progression with some ups and downs PIC WARNING  (Read 1887 times)

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omla

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My progression with some ups and downs PIC WARNING
« on: May 05, 2021, 07:12:22 PM »

Hi everyone

I’ve been wanting to share the most recent part of my journey with you for a while, so here goes. I do this in the hope of providing some info on the potential progression of this disease, alongside some minor anecdotal evidence of improvement/worsening and a few pictures. I also do this as I would like some advice, if possible, on what my next options might be, from your experiences.

In my intro you can find details from start to end-Feb. https://www.peyroniesforum.net/index.php/topic,15172.msg135507.html#msg135507
So I’m going to pick up from there more or less. I have been keeping a daily diary since then, and continuing to take regular pictures, and this has really helped. I refer back to these things now, to create this post.
Sorry it’s stupidly long.


Mid-Jan to end-Feb

During this time, there was a real feeling and sensation that things were flaring up again in terms of inflammation – something that had been stable since the pain during erections had ceased in December. For a few weeks, things were definitely taking a turn for the worse, which actually led to me writing on this forum in the first place. My penis definitely didn’t feel or look healthy overall, and there was a sense that the penis and the nodule on my dorsal shaft were tender and inflamed. Photos were increasingly worrying, with my existing 25/30 degree curve possibly worsening.

Supplements: I started taking CoQ10 and L-Arginine but below the minimum suggested (I was being ultra-cautious, having never had supplements of any kind before).

Manual Traction: Following Neo’s videos mostly (thank you), I gave MT a try for the first time. At this point I was only doing 4/5 mins a handful of times per day, in the morning mainly and occasionally when going for a piss.

I did this traction on and off, taking breaks for 2 or 3 days at times as I occasionally felt some minor sudden jolts of pain when I was evidently tugging too much. There were periods of lingering dull pain, building up to a sensation of irritation, a feeling similar perhaps to cystitis.


Mid to end-March

Supplements: About 3 weeks after starting, I reached the “minimum” as per the survival guide.

MT: As before, doing very insignificant sessions.

Intermittent fasting: I decided to give this a try also, based on things I’d read here and independent research. I aimed to do 18 hours per day, at least 3/4 a week.

The feeling of inflammation quite quickly improved and gradually went away, possibly coinciding with the start of the fasting and the increase in the supplements. I still had moments of pain occasionally (either post-traction or just on its own, mainly when flaccid) but things began to feel a lot “healthier”. In particular, I was constantly monitoring the nodule, how it felt in the mornings, in the evenings, in the shower. I got the impression that, along with the inflammation reducing, the size of the nodule was too. And the photos showing the curve seemed to be more similar to photos prior to the new inflammation.


Early to mid-April

Supplements: Again about 3 weeks later, I got to 300mg of Q10 and 200mg or L-Arg. Higher than the minimum but not the maximum.

MT: I also increased the frequency and intensity of traction. I started doing sessions of 20/30 minutes which got me feeling extremely flexible, with great elasticity. I upped this again by doing 30 minutes in the evenings too. My penis started looking really healthy when in flaccid state, hanging low and quite thick.

IF: I maintained the 18:6 target 3/4 times per week, and once or twice did fasts that were just over 24 hours but never more than that.


Mid-April to now

I am still doing the 3 things above, though I’ve definitely become less strict with fasting, unfortunately. I was/am losing quite a bit of weight and I need to find a system to try to maintain that and do the fasting.

It may all be in my head (the daily diary does help me to be absolutely certain about some things), but during periods when I wasn’t fasting for a whole week I sometimes felt the nodule was getting thicker again. Similarly, during the fasts, things were healthy and less inflamed.

Overall, I am indeed convinced that the nodule has reduced in size. When I do traction and I try the counter-bend move, the shaft is quite flat against my fingers and there are times when the nodule is hardly noticeable. When I randomly go pee and have a feel, again it’s definitely not like it used to be. I know where it is and I can find it, but I now believe someone else just touching my penis wouldn’t feel it at all – something which definitely would not have been the case in these last months.

Unfortunately, however, during this same period a new nodule (or perhaps even two small ones) has/have appeared on the left-hand side of my shaft. Could this be because of the traction? Have I caused further damage/trauma? I doubt it, but who knows. These new ones started off as very shallow-feeling “flakes”, almost, which I felt I could move around a little, but now feel harder and are objectively more noticeable than the original dorsal lump.


Conclusions
Long story short, between end-Jan and now I have been on a rollercoaster of not just emotions but also palpable (literally) changes, both good and bad.

Things were getting bad when I first posted, and rapidly deteriorating, and I think I have reversed that, to some extent.
-   I am convinced, and the daily updates of written thoughts and feelings assist with this, that my nodule on the dorsal shaft has significantly reduced. I think a combination of supplements, manual traction and fasting have caused this improvement.
-   In terms of curvature, I believe that during the re-inflammation phase things were deteriorating quickly, but I perhaps similarly reversed this when I started upping my game with the trio of supplements, traction and IF.
-   The overall health of the penis has greatly improved, especially visible when flaccid.
-   At the same time, I have felt a new bump (or possibly two, even) forming on the left-hand side of the shaft, which is of course very worrying.
-   Lastly, whereas the curve has been stable and the nodule stable/reduced, I have noticed some bad hourglassing/wasting (not sure which is right term) which has gradually gotten worse and now is as bad as it has ever been. This is hugely visible in the semi erect state and has been for a while, and is now showing also during full erections.

The before/after (5 months apart) of the hourglassing, if that’s what it’s called: https://imgur.com/9tWvQ3T speaks for itself

And here are pictures (4 months apart) of the situation with the curve/overall state at the end of Jan, next to a more recent pic in which I believe I have perhaps reversed that deterioration, even if slightly. If not, the curve is definitely stable/has not gotten worse, after managing to reduce inflammation. https://imgur.com/30GsAod

I share the above photos to give you an idea of these conclusions and the situation overall – and perhaps this is where I can ask you: what next?

If it is indeed true that the nodule is decreasing, that the overall health of the penis is improving, that any deterioration is stabilising or being reversed even, surely I should keep doing what is working? The new nodules are obviously a blow to this perspective.

And, even more so, what about the hourglassing – my attempts have clearly had zero impact on this aspect of the disease which has gradually gotten worse and worse. Unlike the curve, this does not seem to be stabilising and the indentations/loss of girth could continue to deteriorate.

Thank you for your time (if you got this far!!) and if you have any questions do let me know. All the best and thanks for any responses.
Logged
Injury June '20
Pain lasted 6m
25° curve formed after, has remained stable
From March '21 bad hourglassing, deterioration before improvement 6m+ later
Using VED but not consistently
Taking L-Arg, CoQ10 and Tadalafil daily

Benraycamp0

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Re: My progression with some ups and downs PIC WARNING
« Reply #1 on: May 06, 2021, 12:04:28 AM »

Great update!

I'd consider looking into device traction (RestoreX or PMP) along with adding Pentox and Cialis. Other than that, I think you just continue the therapies and hopefully you'll continue to see improvements.
Logged
26 years old. 20 degree upward curve with slight clockwise twist. Symptoms onset Dec 20.
Dr. Levine says it's not Peyronie's Disease but a slow healing wound. Saw him Mar 21 and May 21.
Traction (PMP) and supplements per Dr. Levine's recommendation.

Mikel7

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Re: My progression with some ups and downs PIC WARNING
« Reply #2 on: May 06, 2021, 06:19:11 AM »

Great update!

I'd consider looking into device traction (RestoreX or PMP) along with adding Pentox and Cialis. Other than that, I think you just continue the therapies and hopefully you'll continue to see improvements.

This sounds like a great addition plus adding in a VED.  Keep your emotions in check and don't get carried off with gloom an doom thoughts.
Logged
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

Hawk

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Re: My progression with some ups and downs PIC WARNING
« Reply #3 on: May 06, 2021, 09:14:22 AM »

Just for clarification which photo is the most recent the one on the right with the white bedspread or the one on the lelft?
Logged
Prostatectomy 2004, radiation 2009, currently 70 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

omla

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Re: My progression with some ups and downs PIC WARNING
« Reply #4 on: May 06, 2021, 09:33:48 AM »

@Hawk sadly the 'before' is on the left, taken in December, the 'after' is on the right with the white bedspread. This was just a few nights ago.
Logged
Injury June '20
Pain lasted 6m
25° curve formed after, has remained stable
From March '21 bad hourglassing, deterioration before improvement 6m+ later
Using VED but not consistently
Taking L-Arg, CoQ10 and Tadalafil daily

Kobegianna

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Re: My progression with some ups and downs PIC WARNING
« Reply #5 on: May 06, 2021, 10:08:09 AM »

Have you seen any improvements in the hourglassing/wasting since you stared ved And manual traction?  My case look almost identical as your except in the beginning stages. I have a huge dent right below the head on the dorsal side and ventral side. I have no idea if manual traction made it worse or stopped the progress. I stop traction as of now but I am not sure what to do. I don’t want to make it worse but I also don’t know if I don’t do anything it may progress?
Logged
34 yrs Old, Healthy very active
Possibly injured penis or took too much Cialis
Symptoms starting January-February 2021
First dent seen April 4, 2021, painful erections

omla

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Re: My progression with some ups and downs PIC WARNING
« Reply #6 on: May 06, 2021, 11:59:15 AM »

@Kobe I have never done VED, it's what I will be doing next I think. Specifically in the hope of addressing the hourglassing.
The manual traction has definitely done nothing for the hourglassing, which has been gradually worsening in the last months. I don't think the traction has caused it, and I feel overall that I have benefitted from the traction.


Logged
Injury June '20
Pain lasted 6m
25° curve formed after, has remained stable
From March '21 bad hourglassing, deterioration before improvement 6m+ later
Using VED but not consistently
Taking L-Arg, CoQ10 and Tadalafil daily

Paul80

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Re: My progression with some ups and downs PIC WARNING
« Reply #7 on: July 04, 2022, 03:17:30 PM »

Hello, how is the progress? started using ved? how are you doing
Logged
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

Bud luck

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Re: My progression with some ups and downs PIC WARNING
« Reply #8 on: July 04, 2022, 05:15:29 PM »

Dr Trost is against the use of the VED, he said that makes the hourglass or dents worse
Logged
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

Mikel7

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Re: My progression with some ups and downs PIC WARNING
« Reply #9 on: July 05, 2022, 05:16:34 AM »

You may want to try and eliminate the manual traction and invest in a device which will give you a more steady supply of constant tension. There is no way you can gauge your level of pulling forces with manual traction. Also how long can you sit still and pull on your penis?
Logged
Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.

cdub

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Re: My progression with some ups and downs PIC WARNING
« Reply #10 on: July 06, 2022, 12:16:22 AM »

Manual traction can work.  Just be very gentle.  Also you don't have to hold the stretch for minutes at a time.  Right now I stretch 1 minute on, 1 minute off.  And a light stretch!  I am reapplying the stretch after stretching for a minute, stopping for a minute and relaxing then stretching again. Watch Neo's videos on youtube for more specific advice and recommendations for manual stretching, but BE CAREFUL!  Remember you are injured, be gentle with yourself!
Logged
Age: 42
Large Indentation 3/16/20, lead to Penile Microfracture on 6/26/21.  Still suffering from large indentation, some wasting on other side of penis and large nodule when erect in center of penis (dorsal). Penis is straight & erections are good

omla

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Re: My progression with some ups and downs PIC WARNING
« Reply #11 on: August 08, 2022, 11:46:55 AM »

Hello, how is the progress? started using ved? how are you doing

Hey, thanks for asking!

I came on here to provide an update and have only just seen your post. I've been visiting the site and reading lots since I posted in May 2021, so I'm surprised I missed the comments on this thread, sorry about that! So here's the update (less detailed but hopefully of some use):

Let's start with a picture: https://imgur.com/rKL0mX8
The first two photos within the picture I posted previously. Alongside them are two more taken since, to show progress.
The four photos were taken in: December 2020; May 2021; October 2021; June 2022, respectively.

The deformity/difference with the first picture is still more than visible, but I believe there has been considerable improvement in the hourglassing.

What I've been doing since the last post:

Fasting: I completely abandoned this. I'm not against it, and I stand by the fact that it definitely helped during phases of (re)inflamation, I simply haven't felt the feeling of inflammation since, I'm happy to report. If it started up again I would probably consider fasting, but only for limited periods of time in the hope of immediate impact, rather than a longterm plan for improvement. But maybe that's just me.

Manual Traction: Although I do think it can be beneficial, and I agree with some of the comments above, I have not done this since.

Supplements: I have continued as above with 300mg Q10 and 200mg L-Argenine pretty much every day.

VED: So this was the new thing I hadn't tried before. I started in mid-June 2021, which fits nicely into the narrative of improvement based on when the pictures above were taken, but I admit that I have not been very good or consistent with the VED. I did it quite meticulously, following the protocol on here, until November-ish (so for about 4/5 months), then did it inconsistently until January 2022 - not deliberately, just, life was getting in the way - and I haven't really touched it since.
In my opinion, the biggest improvement, referring once again to the pictures, appears to be October '21 to June '22 (i.e., photo 3 --> photo 4) - which is when I was using it way less/not at all - more so than May '21 to October '21 (i.e., photo 2 --> photo 3), when I used it all the time. I liked the VED, I was very careful with it and could feel areas been stretched or pulled or in any case that something was happening. After finishing I often felt an odd kind of warmth. Been meaning to start again.

Tadalafil: I was prescribed Tadalafil in July 2021 and this instantly improved my erection quality and frequency, getting regular (but not every day) morning erections, for example. I do feel sometimes that my glans is not inflating as much as it used to, so this deterioration worries me. I have taken the Tadalafil pretty much daily now for over a year, and continue to do so.

So. Has the VED helped with the hourglassing, contrary to most accounts on here? Or is it a coincidence in terms of timeline, and is it the Tadalafil that has in fact made the real differece?

My plan is to absolutely continue with the supplements and the Tadalafil, and perhaps to start the VED again and try another regular stint to address the soft glans issue and possibly build on the hourglassing improvement. My bend has remained consistent and has not improved or deteriorated. I am able to have regular sex without any problems, other than being ultra aware in my head of what's happening and of being careful to avoid new injuries.

Thanks for reading and any comments/suggestions/advice you may have. All the best :)
Logged
Injury June '20
Pain lasted 6m
25° curve formed after, has remained stable
From March '21 bad hourglassing, deterioration before improvement 6m+ later
Using VED but not consistently
Taking L-Arg, CoQ10 and Tadalafil daily

Sonic

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Re: My progression with some ups and downs PIC WARNING
« Reply #12 on: August 10, 2022, 09:15:36 PM »

You can definitely see a big improvement on the narrowing on that last pic.

Do you take the tadalafil before bed?
Logged
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.

omla

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Re: My progression with some ups and downs PIC WARNING
« Reply #13 on: August 13, 2022, 06:25:36 AM »

Do you take the tadalafil before bed?

Doc said the time doesn't matter too much, main thing is to take it at consistently the same time every day. I always take it at 6/7pm.
Logged
Injury June '20
Pain lasted 6m
25° curve formed after, has remained stable
From March '21 bad hourglassing, deterioration before improvement 6m+ later
Using VED but not consistently
Taking L-Arg, CoQ10 and Tadalafil daily

Sonic

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Re: My progression with some ups and downs PIC WARNING
« Reply #14 on: August 17, 2022, 03:14:11 PM »

Doc said the time doesn't matter too much, main thing is to take it at consistently the same time every day. I always take it at 6/7pm.

I see.. Well, I have to say based on those recent pics congratulations to you for those very good results. You can clearly see on the first hour glassing pic that it was quite severe then gradually got more filled out and on the last pic you can really see a big difference from the first pic. It's much more filled out.

Those are probably the best picture proof results I've seen on here when it comes to hourglassing.

What VED did you use sir?
Logged
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.
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