Peyronies Society Forums

Please login or register.

Login with username, password and session length
Pages: [1]   Go Down

Author Topic: Losing a full inch in 6 months?  (Read 5614 times)

0 Members and 1 Guest are viewing this topic.

MikeSmith

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 96
Losing a full inch in 6 months?
« on: June 11, 2010, 04:48:33 PM »

Between January and now, it seems like I lost about an inch of erect length.  It depends on erection quality, and it's hard to know when I am at 100% - but measuring it straight (unbending the curve) - there's 1" that seems to be missing.  The scar tissue is much harder and nodular than January as well - when it was initially just like a rubber band.  Is this a "phase" where the scar is contracting (I know Levine says it's "unstable" for a year or so) - so is this the end of that length for good then?  I had been using fast size too - on and off - to preserve the length (well, to make it longer since I already lost length prior to this), but I noticed I couldn't pull it all the way forward and removed some rods in the last few sessions.   This is seriously starting to get very depressing.  Not only is it much smaller, but the hourglassing is worse and it's bending to the left in addition to straight up.  It just seems to keep getting worse.  I am afraid to even look at it anymore in the erect state - it looks like a dog's chew toy at this point.

How invasive is an implant?  I seriously can't look at myself like this much longer.
Logged

Old Man

  • Senior Member - Major Contributor
  • *****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 2196
Re: Losing a full inch in 6 months?
« Reply #1 on: June 11, 2010, 07:31:57 PM »

MikeSmith:

You should send JackP an email to get his input about penile implant. He had a successful one back in 2008. I consider him the resident expert on this subject. IMHO, I think that you should exhaust some more options before considering an implant. Once done, they cannot be reversed and you then have to deal with what you were dealt, etc. Another thing thing, I consider implant surgery the "last resort" after everything else has failed.

Old Man
Logged
Age 92. Peyronies Disease at age 24, Peyronies Disease after radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction.
Many other surgeries in the last 10 years.

nemo

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 740
Re: Losing a full inch in 6 months?
« Reply #2 on: June 11, 2010, 11:39:44 PM »

Mike, I know you're freaking out, and I understand why.  But it's important that you avail yourself of every kind of anti-scarring help you can right now, like Vit. E, Pentox/Trental, etc. 

As to losing length, I can tell you from my personal experience, it was not permanent.  With Peyronies Disease, I lost a half inch quickly.  After a couple months the bend sort of released to a great degree, but the bloodflow past that point was diminished to the point that my glans never gets really hard anymore.  BUT ... I lived like that for a couple years, then got a VED.  After using the VED for a few weeks, I not only gained the half inch back, but even a little more - almost another half inch.  So, the net result is I'm actually longer than I was pre-Peyronies Disease, though I don't get the same "cat couldn't scratch it" type of glass cutting erection due to the scar tissue near the glans. 

So, don't abandon hope.  Do what you can now to mitigate the scar hardening.  Then you can work on regaining length later. It's NOT a lost cause, I assure you.

Take care,
Nemo
Logged
50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

SSmithe

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 56
Re: Losing a full inch in 6 months?
« Reply #3 on: June 12, 2010, 12:54:06 AM »

Hang in there Mike.  I hate like hell what is happening to you and the rest of us.  There will always be the implant option down the road.  You don't want to rush into things and have those "what if I waited" questions for the rest of your life.

As far as shrinkage, it is happening to me too.  I do know however that even in healthy males, an fearful mind brings a shriveled penis.  A calm and relaxed mind brings suppleness.  The old "hows it hanging" question has more truth than we may know.  Its may be easier said than done, but search for peace... it can only help.
SSmithe
Logged
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  Erectile Dysfunction.  Trying to stay positive.

MikeSmith

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 96
Re: Losing a full inch in 6 months?
« Reply #4 on: June 13, 2010, 12:35:36 AM »

Thanks everyone.   Nemo, that is really good news.  I am back on pentox - usually just 2 per day bc it makes me have insomnia.  I'm on pentox, arg, vit e, cialis or viagra, and tradozone at night.  I've had 5 VIs.  So, I'm thinking I am attackign the scar front as much as possible.

I used the VED a bit already - do you think it's better to wait on that?  I think a lot of people encouraged me to use it already on here.  Did you regain size permanently or do you have to use the VED continually to maintaint the size?

Nemo - how did the VED affect your girth?  Did you have hourglassing?  Did it work on that at all?  Just wondering cuz it sounds like Isort of  have the same type of erection you do - not very hard beyond the plaque.  The glans gets slightly hard but nothing like it used to. It's gotten worse since the onset.  Beyond the plaque, it is narrow and not very hard.  Before the plaque, it's ok...and the plauqes themselves are harder than anything - like marbles.  I have 3 clear ones now... i used to have a band but now there are 3 nodules.  

I won't think much more about the implant for now... I just sort of want to have the worst case scenario in mind & I am willing to jump though a few more hoops (a year with the VED, VIs, etc...) before considering surgery.  I have had some bad days where I just want them to go in & pull all this plaque crap out of me.
Logged

nemo

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 740
Re: Losing a full inch in 6 months?
« Reply #5 on: June 13, 2010, 03:04:52 PM »

Mike, I think using the VED now is probably a good idea - but follow Old Man's advice - be cautious and don't overdo it.  And yes, the gains I made were permanent - I rarely use the VED anymore.  As to girth, I never had hourglassing, just a bend, and the VED didn't really affect my girth that I could tell.  In essence, I think what the VED did for me was stretch out some tissue that contracted from the Peyronie's.  Once it was stretched out, it seemed to stay that way.  It didn't help me get better blood flow to the glans though, so I just have to live with that. 

It sounds like you're doing everything right.  Just don't fall into thinking that you're ruined, because as my experience, and many others will attest, you can see improvement.  You're benefitting from much more information than most of us had in the beginning too, so make use of it (things like Pentox/VED, etc.)

It'll be ok - you just have to play the hand you've been dealt and make the most of the available resources. 

Nemo
Logged
50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

SSmithe

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 56
Re: Losing a full inch in 6 months?
« Reply #6 on: June 13, 2010, 03:51:58 PM »

Mike,
You said
Quote
I have 3 clear ones now... i used to have a band but now there are 3 nodules. 
.
Has the band diminished and the three nodules remain?  Or is the band still there but with more prevalent nodules?

If the band has diminished, that may be a good sign...  I am interested as I too have a band.  It is hard to say, but it is defiineitely thicker in some parts and I wonder if a similar thing is happening to me.
SSmithe
Logged
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  Erectile Dysfunction.  Trying to stay positive.

MikeSmith

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 96
Re: Losing a full inch in 6 months?
« Reply #7 on: June 13, 2010, 10:30:30 PM »

Has the band diminished and the three nodules remain?  Or is the band still there but with more prevalent nodules?

If the band has diminished, that may be a good sign...  I am interested as I too have a band.  It is hard to say, but it is defiineitely thicker in some parts and I wonder if a similar thing is happening to me.
SSmithe


I don't think the band ever was truly a continuous semi-circle.  It probably always had some breaks, but I don't fully remember now.  Now, there is some "normal" tissue in between the 3 plaques I have (left, top, and right).  I think it may have always been this way but since the band wasn't so bad, I didn't perceive there to be anything normal between the 3 spots.  Then, as the 3 spots got worse and harder, I started to notice there is some normal tissue in between.  For example, on the left - what was the "thicker" side of the band is now like a big nodule that is larger & harder than the band ever was.  I think the band was a very early stage part of this. 
Logged

MikeSmith

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 96
Re: Losing a full inch in 6 months?
« Reply #8 on: June 13, 2010, 10:33:12 PM »

Nemo, thanks again for the info & the good news.  Definitely makes me feel better with all of the stuff going on.   I am going to start using the VED regularly - I need to just work it into my schedule in a fixed way.

I'm also in a phase where there is a lot more pain... so I am a little concerned about using anythign mechanical.  Then again, some docs say the devices decrease pain so maybe it is counterintuitive.

Mike, I think using the VED now is probably a good idea - but follow Old Man's advice - be cautious and don't overdo it.  And yes, the gains I made were permanent - I rarely use the VED anymore.  As to girth, I never had hourglassing, just a bend, and the VED didn't really affect my girth that I could tell.  In essence, I think what the VED did for me was stretch out some tissue that contracted from the Peyronie's.  Once it was stretched out, it seemed to stay that way.  It didn't help me get better blood flow to the glans though, so I just have to live with that. 

It sounds like you're doing everything right.  Just don't fall into thinking that you're ruined, because as my experience, and many others will attest, you can see improvement.  You're benefitting from much more information than most of us had in the beginning too, so make use of it (things like Pentox/VED, etc.)

It'll be ok - you just have to play the hand you've been dealt and make the most of the available resources. 

Nemo
Logged

nemo

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 740
Re: Losing a full inch in 6 months?
« Reply #9 on: June 14, 2010, 12:48:06 AM »

Buy some Acetyl L-Carnitine and try to get a prescription for Pentox/Trental or buy it over the internet (I used to use mexmeds4you.com).  Both these are supposed to help with the pain and the Pentox is an anti-fibrotic, so will address the scar tissue issue directly. 

Nemo
Logged
50 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred in 2013. Have now begun a third episode in 2021. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline.

BrooksBro

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 261
  • Houston TX, Peyronie's 2009, Dr. Larry Lipshultz
Re: Losing a full inch in 6 months?
« Reply #10 on: June 14, 2010, 05:36:19 AM »

I have noticed similar changes to the density of my plaque that MikeSmith described.  I found the FastSize to be reasonably effective in restoring length and girth (even my wife noticed the improvement), as long as I could wear it for 4+ hours a day (2 in am, 2 in pm).  Once I was barely doing 2-hours a day, I found I could no longer add spacers.  I even had some difficulty keeping it on with the maximum number of spacers I had been using.  I believe it is a highly time dependent therapy.  In my experience, if you cannot devote 4+ hours a day to it, every day, then it is not likely to be effective at either improving or even maintaining length.

I recently switched to twice-daily VED therapy, and I do not have any anecdotal information to share beyond what others have already posted.
Logged

MikeSmith

  • Voting Member
  • **
  • Offline Offline
  • Gender: Male
  • Posts: 96
Re: Losing a full inch in 6 months?
« Reply #11 on: June 14, 2010, 02:00:54 PM »

Brooks - yeah I agree the 4+ hours is the key... I have noticed much better results from longer use, though sometimes I had pain near the base after too many days of this.   Also, it's kind of annoying to keep on for that long.  I can't really go anywhere with it on (it's too obvious under pants and probably dangerous if I move in the wrong way, I'll end up doing some damage).    And there's no way to move around much - so I basically need a 4 hour block of TV (well, 4.5 with breaks) - which is a huge waste of time.  Unless I am really missing something... I don't know how some of those guys in the study used it for 8 hours.  Oh also if I walk around with it on, it falls off much more easily than if I am sitting.  Gravity isn't exactly in your favor with that thing.  I'll post this in that thread too & see what people think.

Nemo - thanks - I am on Pentox 2x per day because 3x per day affected my sleep negatively.  It just hasn't helped much, but then again - I don't know if these meds prevented worsening.  Even 2x per day is a little tough but I am trying to hit it with everything from the 5 VIs, the 2.5 mg cialis daily, trazodone for nighttime erections, vit e, l-arganine, and fish oil for inflammation.  Who knows... I am basically my own test tube at this point.  In a year from now, I'll probably be in the "stable" phase and know what all this stuff did... though it'll be hard to say what didn't work since I'm combining nearly everything.  So far though, I've only worsened...even with the entire arsenal above - though I haven't religiously taken the trazodone and cialis/viagra.  Traz makes me sleep too long & the cialis/viagra is expensive and makes me very hot - in the face - sort of uncomfortable.  Doesn't happen at 2.5 mg though.

In March, I had a small spot of calcification in the plaque - which was larger, so I am really hoping to prevent the rest of it from calcifying.  Then again, it seems like deformity and loss of size occurs whether it is calcified or not.

I haven't heard about l-carnitine but I'll check it out.  
Logged
Pages: [1]   Go Up
 

Related Topics

  Subject / Started by Replies Last post
2 Replies
1537 Views
Last post April 12, 2018, 01:55:49 PM
by JohnWright
17 Replies
2290 Views
Last post May 10, 2018, 03:32:24 AM
by WhatNext81
81 Replies
8562 Views
Last post July 27, 2020, 07:01:49 AM
by peter123