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Author Topic: Significant decline of my peyronies  (Read 520 times)

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Stratt_mat1

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Significant decline of my peyronies
« on: August 05, 2020, 10:42:20 AM »

Damn, just making a post again after a very inactive time from these boards. Unfortunately its not the greatest news. I first was diagnosed and developed symptoms of peyronies in August of 2019.

I started having extremely painful elections that woke me up at night and in the middle of the day. When I finally examined my dick I  noticed my elections were shorter and for some odd reason i had a large dent in the top of the penis right below the head. Came to this forum sometime in September I believe. After reading all the tips and advice here I hoped on the pentox, cialis, arginine combo almost immediately and diligently stuck with these treatments the entire year since. I also took coq10, vitamin E, as well as penis traction everyday. I have a low carb diet consisting only of added complex carbs of sweet potatoes along with a lot of fats and protein.

 Perfect health and fitness and only 29 years old when diagnosed. No diabetes issues and perfect blood work. I had high hopes that with my early treatment and all I was doing with suggestions here and lifestyle habits that I would turn things around quickly.

I had no changes to my penis for six to eight months which was a good thing cause no decline happened, albeit no improvement either. But after eight months things got worse out of nowhere. The pain mostly stopped which I'm extremely thankful for but around the same time that dent at the top of my penis under the head turned into the entire top third of my penis now being significantly thinner than the rest.

As if I can still retain my old thickness in the bottom of my penis but towards the middle things taper to a thinner circumference and the entire rest is basically the same size as my flaccid penis. It even stays like this when I am flaccid now too.

This alone wouldn't be a huge deal to me as I know a surgery could fix me right up and things would be fine if I ever needed to go that route. But the other big issue I noticed was signicant shortening. I was kind of in denial about this at first and kept trying to rationalize it. But finally recently I said screw it and pulled out a measuring stick.

Well sure enough I went from 8 inches which was well above average and women always loved it. A huge source of confidence for me when I did have it, and now I'm literally a tad over 6 inches and probably going to shrink more from here ongoingly.

This is beyond frustrating to me because I felt like I did everything right and took all the proper advice and feedback and had a massive amount of discipline with everything I did. As well as spent quite a bit on all the supplements, drugs, and doctors. It just feels like it was  a wasted time and effort if this was going to happen either way.

It seems obvious to me that the scarring is probably just taking place now and that's what caused all these changes of course. But my question with it is couldn't I return to my old penis girth and length if they just did a grafting to replace my scar tissue with healthy tissue along with getting an implant? That way that scarring that was preventing my normal girth would be gone then I shouldn't have any issues having my pre scarring penis size right?

I really feel disheartened and have doubts that I'm gonna be able to restore an entire 2 whole inches from doing manual traction with my hands, the pentox gives me crappy  side effects, and the supplements seem like a waste of money at this point. Keep in mind with this narrowing I can't even have normal sex anymore  even with all the cialis I can take. My penis lacks the stability to even penetrate a woman properly without significant risk of further damage because of the state of narrowing stability issues. There's definitely worse problems I could have than this. But it annoys the crap out of me that I have to have a broken dick when I'm barely 30 years old now.
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30 yrs old, peyronies diagnosis Aug 2019. Daily pentox, cialis, arginine, traction therapies. Started with dent and pain, top half penis thinned. Upward curve from pre peyronies natural left curve.  2 inch loss of length. 8 in to 6 inches. Nightmare.

TonySa

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Re: Significant decline of my peyronies
« Reply #1 on: August 05, 2020, 12:08:16 PM »

I’m sorry to hear this bad news.  I would immediately consider traction (a device-not just manual) for recovering length, and VED for girth and low dose nightly generic cialis (2.5-5mg) all to remodel plaque to healthy tissue.  Since it’s recently flared up a doc prob wouldn’t consider any surgery until you’re in the stable phase (usually at least 12 months).  Hang in there and keep us posted.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Stratt_mat1

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Re: Significant decline of my peyronies
« Reply #2 on: August 05, 2020, 12:33:21 PM »

I’m sorry to hear this bad news.  I would immediately consider traction (a device-not just manual) for recovering length, and VED for girth and low dose nightly generic cialis (2.5-5mg) all to remodel plaque to healthy tissue.  Since it’s recently flared up a doc prob wouldn’t consider any surgery until you’re in the stable phase (usually at least 12 months).  Hang in there and keep us posted.

I don't think it flaired as much as the actual deformity from scar build up that was happening during and post inflammation stage finally set in and this is the end result. I can get the traction and ved device and am already using the cialis, but do you really think I can gain that much back easily?

 Its a significant amount of girth loss on half my penis, no stability in upper half and 2 inches shortening, additionally I always had a very slight left curving penis but along with these narrowing of girth and shortening issues my penis also now has a curve upward at the last third. And weirdly enough the left curve disappeared completely.

I'm in no rush to do surgery right now anyways because I can't afford it. I just wanted to know if doing a grafting of the damaged area I have along with a sliding implant would correct all the issues and restore my old size when I am able to? My understanding is that grafting will cause Erectile Dysfunction but get rid of the scarring which doesn't matter since its done at the same time as an implant anyways.
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30 yrs old, peyronies diagnosis Aug 2019. Daily pentox, cialis, arginine, traction therapies. Started with dent and pain, top half penis thinned. Upward curve from pre peyronies natural left curve.  2 inch loss of length. 8 in to 6 inches. Nightmare.

Caseyjones01

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Re: Significant decline of my peyronies
« Reply #3 on: August 05, 2020, 09:52:56 PM »

This is concerning. I am now 37 and got peyronies last year too. I tried early treatments and they weren't really promising for me either. There have been periods of lessening pain for me as well and then abrupt sudden change. Right now i dont have anymore constant dull pain its seems to have subsided, but just before this, i felt alot of pinching and then one day woke up and my dick was about .5 inches shorter possibly more. I still get some pain, and it still feels very tight when i have an erection. Before it was too painful for me to do traction, but now i feel like i can. I recently did another ultrasound and the gp said my calcium disappeared and he couldnt see anything. I for sure have 3 plaques, i guess the pentox helped with the calcium.
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Incident late April 2019; pop sound from BJ and loss of erection; Diagnosed sept 2019. Suffered from untreated psychological Erectile Dysfunction for quite sometime. Upward curve 30-35° listing to the left 20° 2 plaques

Pentox 3 times 2.5 mg cialis daily

TonySa

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Re: Significant decline of my peyronies
« Reply #4 on: August 05, 2020, 10:02:14 PM »

It’s pretty amazing pentox can address calcification...also see survival guide re pentoxhttps://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Stratt_mat1

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Re: Significant decline of my peyronies
« Reply #5 on: August 06, 2020, 01:24:39 AM »

It’s pretty amazing pentox can address calcification...also see survival guide re pentoxhttps://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057

I'm sure the drugs work very well but what confuses me is how I had such a worsening condition doing literally all the right things. I thought being on pentox was supposed to prevent my condition from worsening? Or is this only in someone's stable phase after scarring already settled down?
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30 yrs old, peyronies diagnosis Aug 2019. Daily pentox, cialis, arginine, traction therapies. Started with dent and pain, top half penis thinned. Upward curve from pre peyronies natural left curve.  2 inch loss of length. 8 in to 6 inches. Nightmare.

Hawk

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Re: Significant decline of my peyronies
« Reply #6 on: August 06, 2020, 09:22:25 AM »

The nature of Peyronies Disease is that it is unpredictable.  That in part is what makes small studies less reliable because it is difficult to know if change is a result of treatment or part of that individual's natural progression.

I am not sure of your age or your ability to have intercourse but to me there is one solution that makes all of it history and that is an implant by a top surgeon.  That is more likely the best solution when you are older but many men in their 20's have had them.  It is also more likely a solution when you have some Erectile Dysfunction along with the Peyronies Disease but men with good erections and greater than a 90 degree bend have had them.  It is difficult to find a man with an implant by a great surgeon who does not wish they had made the decision much sooner.

I suggest you fill in your signature line.  It will be much less typing asking questions and you will get better answers.  Here are instructions https://www.peyroniesforum.net/index.php/topic,10819.0.html
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Stratt_mat1

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Re: Significant decline of my peyronies
« Reply #7 on: August 06, 2020, 03:56:27 PM »

The nature of Peyronies Disease is that it is unpredictable.  That in part is what makes small studies less reliable because it is difficult to know if change is a result of treatment or part of that individual's natural progression.

I am not sure of your age or your ability to have intercourse but to me there is one solution that makes all of it history and that is an implant by a top surgeon.  That is more likely the best solution when you are older but many men in their 20's have had them.  It is also more likely a solution when you have some Erectile Dysfunction along with the Peyronies Disease but men with good erections and greater than a 90 degree bend have had them.  It is difficult to find a man with an implant by a great surgeon who does not wish they had made the decision much sooner.

I suggest you fill in your signature line.  It will be much less typing asking questions and you will get better answers.  Here are instructions https://www.peyroniesforum.net/index.php/topic,10819.0.html

Thank you Hawk. I have added a signature with more detail now. Also I am looking into implants but will take me a while to save, also I would like to figure out fixing this length loss first. Unless a graft plus surgery at same time would fix that.
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30 yrs old, peyronies diagnosis Aug 2019. Daily pentox, cialis, arginine, traction therapies. Started with dent and pain, top half penis thinned. Upward curve from pre peyronies natural left curve.  2 inch loss of length. 8 in to 6 inches. Nightmare.

projectpd

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Re: Significant decline of my peyronies
« Reply #8 on: August 06, 2020, 04:40:47 PM »

thats one of the frustrating things, we don't really know if we still have all or most of the original expansive tissue that's just ready to function normally, but it's can't only because it's adhered to some inelastic scar tissue that is "cramping its style", and if so how to release its potential, or, on the other hand, is the main issue that we have lost expansive tissue, then we just have to slowly grow more of it I guess. 
it might be a bit hasty to look into implants just yet, as there are other possibilities that people here have used e.g. VED (pumping) and there are ancient /rare  reports on iontophoresis and DMSO. and heat. if there is an active excess inflammatory process, using anti inflammatories.
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projectpd

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Re: Significant decline of my peyronies
« Reply #9 on: August 06, 2020, 04:50:46 PM »

I suppose it is more likely the tunica which is mainly compromised and most of  the expansive tissue remains, it just needs gradual elongation of the tunica healthy and/or fibrotic/scarred issue
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Stratt_mat1

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Re: Significant decline of my peyronies
« Reply #10 on: August 06, 2020, 05:05:12 PM »

thats one of the frustrating things, we don't really know if we still have all or most of the original expansive tissue that's just ready to function normally, but it's can't only because it's adhered to some inelastic scar tissue that is "cramping its style", and if so how to release its potential, or, on the other hand, is the main issue that we have lost expansive tissue, then we just have to slowly grow more of it I guess. 
it might be a bit hasty to look into implants just yet, as there are other possibilities that people here have used e.g. VED (pumping) and there are ancient /rare  reports on iontophoresis and DMSO. and heat. if there is an active excess inflammatory process, using anti inflammatories.

I can't afford an implant right now and it wouldn't be covered under my insurance anyways. So better or worse its out if the picture for at least a couple years. I understand what you are saying there. I assumed it was just the inelastic scar tissue preventing regular flow and stretch. I dont know how I could have tissue just atrophy though if I can still get regular elections and have healthy blood flow albeit deformed junk due to the damage. I wouldn't want to try having sex right now with this current instability risking worse damage but I definitely feel like I still have good health otherwise.

I'm still keeping my faith in the tractiin and will pick up a ved device and continue the pentox for as long as a doctor will still prescribe me,  cialis, arginine , coq10, vitamin E etc. I follow a lot of neoV advice but it's just really frustrating that this sudden worsening still happened months after doing all the therapies correctly since the very early stage. I have to suck up having a crap sex life for a bit. But I hope some newer therapies will come soon that might be a more effective treatment to restore old function and tissue which seems to be jn works. I guess that's just a matter of how patient a person can be and are willing to wait. I dont mind the idea of an implant I just don't want to pay that much until I can find some way to  garuntee first to get my old size back. From there if I still have Erectile Dysfunction issues the implant will fix that. But there's no going back from that. So I don't want to do it and risk being forever at my current size after.
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30 yrs old, peyronies diagnosis Aug 2019. Daily pentox, cialis, arginine, traction therapies. Started with dent and pain, top half penis thinned. Upward curve from pre peyronies natural left curve.  2 inch loss of length. 8 in to 6 inches. Nightmare.

Tortão Pra Direita

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Re: Significant decline of my peyronies
« Reply #11 on: August 06, 2020, 07:07:03 PM »

I'm confused
Why is OP considering an implant?
I mean... is it mandatory if you need grafting?
I'm still using meds but I think I need a surgery to straighten my penis. I'd never consider putting a plastic in my penis, though.
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Symptoms started something like september 2019. Peyronies Disease developed quickly. After one complete year, pain is almost gone. Currently regimen: VED 2x day, Pentox 1x day, Cialis every week. Excellent erections, but a 70º degree (approximately).

Stratt_mat1

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Re: Significant decline of my peyronies
« Reply #12 on: August 06, 2020, 08:08:41 PM »

I'm confused
Why is OP considering an implant?
I mean... is it mandatory if you need grafting?
I'm still using meds but I think I need a surgery to straighten my penis. I'd never consider putting a plastic in my penis, though.

Grafting is notorious for causing erectile dysfunction after. Of which is hard to manage even with cialis or viagra. I already have Erectile Dysfunction so grafting will more than likely only make that worse.

People that can get grafts without the implant might have a form of peyronies that causes deformjty but doesn't have issues with Erectile Dysfunction. Thats why it's often done side by side with the implant in one combined surgery. Alternatively you could get the grafts and not the implant and then see how that works out and if the Erectile Dysfunction becomes unmanageable later than get the implant then. But as of now an implant is the only effective "cure" of peyronies that will completely stop any more disease process from happening and help people to have fully functionally normal sex lives again and no longer need all the drugs and supplements, traction etc.
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30 yrs old, peyronies diagnosis Aug 2019. Daily pentox, cialis, arginine, traction therapies. Started with dent and pain, top half penis thinned. Upward curve from pre peyronies natural left curve.  2 inch loss of length. 8 in to 6 inches. Nightmare.

TonySa

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Re: Significant decline of my peyronies
« Reply #13 on: August 06, 2020, 08:10:47 PM »

Traction, VED and nightly generic low dose cialis can help you regain your lost length.  Have you read the survival guide?  https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

Hawk

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Re: Significant decline of my peyronies
« Reply #14 on: August 06, 2020, 09:12:09 PM »

I think it is rare that grafting is appropriate with an implant.  It increases your chances of infection many times.  Still low but not low enough for me since it is  a disaster.  There is no deformity of the shaft that an implant, hand remodeling, and maybe some plaque incision will not fix and that includes almost 180 degree curves.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

Hawk

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Re: Significant decline of my peyronies
« Reply #15 on: August 06, 2020, 09:13:46 PM »

This topic is now locked because it has exceeded the 10 post limit imposed on Introductory Topics.

Please continue to post on the appropriate boards on the forum.
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums
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