Peyronies Society Forums

Please login or register.

Login with username, password and session length
Advanced search  

News:

We offer our most sincere condolences to Old Man who lost his wife of 59 years on Monday night to Pancreatic Cancer.   
He is in our sincere thoughts and prayers.

Pages: [1]   Go Down

Author Topic: Xiaflex Length Loss / Gain ?  (Read 1326 times)

0 Members and 1 Guest are viewing this topic.

GaussRifle

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 514
Xiaflex Length Loss / Gain ?
« on: July 13, 2021, 03:34:57 PM »
I am down with 2 rounds of xiaflex and my penis after the second round seems 0.5 inches shorter. Has anyone undergone the treatment tell me if this is temporary and will I gain it back ? Any experienced members can share their stories about how much they lost or gained after xiaflex ?
Logged
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

wtrenton

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 22
Re: Xiaflex Length Loss / Gain ?
« Reply #1 on: July 13, 2021, 05:15:20 PM »
I have had Peyronies Disease for 8-9 months. I’ve had one round (2 injections) of Xiaflex so far. Fully erect I’ve lost nearly 2 inches—a little more than 1-3/4. Flaccid is harder to tell but it shrinks down much, much more than it used to. I don’t know enough about any of this so far to know if the loss of length is because of the disease itself and the plaque, or because of the Xiaflex treatment. My next 2 injections aren’t until mid August.
Logged
43 y/o
Peyronies Disease diagnosis Dec 2020
Numerous plaques; curve up&left combnd. 30 deg.
7 mos of Pentox did nothing
Completed 10 Xiaflex injections w/ Dr. Lue, Feb 2022
RestoreX limited use
Curve almost entirely gone
Lost length 1-3/4" still trying to restore

GaussRifle

  • Major Contributor
  • ****
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 514
Re: Xiaflex Length Loss / Gain ?
« Reply #2 on: July 13, 2021, 05:38:50 PM »
If your next 2 injections aren't until mid August, it means you got your first round less than 2 weeks ago ? Losing almost 2 inches sounds ridiculous to me. I'm guessing after xiaflex the body treats it like an injury and the lenis contracts and doesn't expand as much ? I'm hoping over time... everything returns.
Logged
26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

porterrobinson

  • Solid Contributor
  • ***
  • Country: england
  • Offline Offline
  • Gender: Male
  • Posts: 134
Re: Xiaflex Length Loss / Gain ?
« Reply #3 on: July 13, 2021, 06:53:24 PM »
studies dont support a loss of length with xiaflex. on this forum everyone appears to have a significant abovr average penis and losing more than the highest outliniers in the studies. very strange. i wonder if people who claim to lose two inches which is down right ridiculous actually measured
Logged
single, mid 20
diagnosed early 2020
indentation 20 degree bent to left, recurrence with new indentation below glans
tried vacuum device with no success

wtrenton

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 22
Re: Xiaflex Length Loss / Gain ?
« Reply #4 on: July 13, 2021, 10:09:37 PM »
Quote from: GaussRifle on July 13, 2021, 05:38:50 PM
If your next 2 injections aren't until mid August, it means you got your first round less than 2 weeks ago ? Losing almost 2 inches sounds ridiculous to me. I'm guessing after xiaflex the body treats it like an injury and the lenis contracts and doesn't expand as much ? I'm hoping over time... everything returns.

Correct. Dr. Lue in San Francisco started my Xiaflex  in the last couple weeks. I stupidly didn’t really measure it right before, but visually even my wife has noticed it was clearly shorter fully erect than before Peyronies Disease. But it shrinks much more now, so I assume the loss in length is probably a function of both disease and treatment side effects but I don’t know for sure.

Like you, hoping for the best.
Logged
43 y/o
Peyronies Disease diagnosis Dec 2020
Numerous plaques; curve up&left combnd. 30 deg.
7 mos of Pentox did nothing
Completed 10 Xiaflex injections w/ Dr. Lue, Feb 2022
RestoreX limited use
Curve almost entirely gone
Lost length 1-3/4" still trying to restore

wtrenton

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 22
Re: Xiaflex Length Loss / Gain ?
« Reply #5 on: July 13, 2021, 10:11:41 PM »
Quote from: porterrobinson on July 13, 2021, 06:53:24 PM
studies dont support a loss of length with xiaflex. on this forum everyone appears to have a significant abovr average penis and losing more than the highest outliniers in the studies. very strange. i wonder if people who claim to lose two inches which is down right ridiculous actually measured

Try reading my post again. I didn’t attribute it to Xiaflex. I said I didn’t know what was causing the length—the underlying disease or the Xiaflex.

And yes. I’ve measured.
Logged
43 y/o
Peyronies Disease diagnosis Dec 2020
Numerous plaques; curve up&left combnd. 30 deg.
7 mos of Pentox did nothing
Completed 10 Xiaflex injections w/ Dr. Lue, Feb 2022
RestoreX limited use
Curve almost entirely gone
Lost length 1-3/4" still trying to restore

BrettC

  • Solid Contributor
  • ***
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 109
Re: Xiaflex Length Loss / Gain ?
« Reply #6 on: July 17, 2021, 05:54:17 PM »
I noticed a significant loss in length mainly due to the actual Peyronie's curve and not the Xiaflex.  Sort of a cruel joke too, I have noticed i got a lot thicker.  So lost length, but you can tell the tissue and such are still there just packed in more tightly so to speak.  I joke that I am built like a curved traffic cone, but it seems apt. 

Hoping that with further treatment, Restorex, and pumping things improve.   
Logged
50 years old
Diagnosed just over a year and a half with 40-45 degree upward bend after starting with 60-65 degrees.
Completed one full round of treatments with Xiaflex (8 injections) 
Using Restorex and oral medications as well (Pentox, Cialis)

Lefty83

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 7
Re: Xiaflex Length Loss / Gain ?
« Reply #7 on: July 22, 2021, 08:36:31 AM »
Quote from: wtrenton on July 13, 2021, 05:15:20 PM
I have had Peyronies Disease for 8-9 months. I’ve had one round (2 injections) of Xiaflex so far. Fully erect I’ve lost nearly 2 inches—a little more than 1-3/4. Flaccid is harder to tell but it shrinks down much, much more than it used to. I don’t know enough about any of this so far to know if the loss of length is because of the disease itself and the plaque, or because of the Xiaflex treatment. My next 2 injections aren’t until mid August.

same.   im REALLY hoping before my next round (in mid august for me as well) ill see if the first round did anything to help or restore any length lost.
Logged
38
45degree Left Curve
Xiaflex, first round

pen fifteen

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 14
Re: Xiaflex Length Loss / Gain ?
« Reply #8 on: July 23, 2021, 10:34:15 AM »
3 rounds of xiaflex for me. no length lost or gained. I've heard of guys losing length but 2 inches sounds like an incredible amount lost. Also I think the loss of length is due to Peyronies itself and not Xiaflex.
Logged
31 y/o. 30 degree upward, and slightly leftward curve. 3 rounds of Xiaflex completed and praying I don't have to do anymore.

Caseyjones01

  • Voting Member
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 78
  • 37 years old
Re: Xiaflex Length Loss / Gain ?
« Reply #9 on: January 25, 2022, 01:29:12 AM »
No, I lost about an inch to peyronies. Immediately after xiaflex, over a period of months pain resumed and penile shortening and more curving occurred, it is definitely from the injection, it is buckling at the injection site. So 2 inches from a 5.3inch penis with 60° downward left curve from 30°. I had hematoma and significant pain and tenderness constantly and was told not to use restorex if I had pain. Although it has come to my attention though that using restorex might have helped stop shrinkage even if I felt it was too painful to use, maybe so but the extra inch lost for me was definitely a result of the injection.
Logged
37 Years Old
April 2019; pop sound from BJ
Diagnosed Sept 2019. Possible 2nd injury
Have 2 very large plaques and loss of size and girth
Pain for 2 years
Tried VED, Traction, Xiaflex
Pentox 3 times 2.5 mg Cialis daily started Colchicine 2/17/20

Caseyjones01

  • Voting Member
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 78
  • 37 years old
Re: Xiaflex Length Loss / Gain ?
« Reply #10 on: January 25, 2022, 01:32:25 AM »
My above response was for pen15

Quote from: pen fifteen on July 23, 2021, 10:34:15 AM
3 rounds of xiaflex for me. no length lost or gained. I've heard of guys losing length but 2 inches sounds like an incredible amount lost. Also I think the loss of length is due to Peyronies itself and not Xiaflex.
Logged
37 Years Old
April 2019; pop sound from BJ
Diagnosed Sept 2019. Possible 2nd injury
Have 2 very large plaques and loss of size and girth
Pain for 2 years
Tried VED, Traction, Xiaflex
Pentox 3 times 2.5 mg Cialis daily started Colchicine 2/17/20

pen fifteen

  • Voting Member
  • **
  • Country: us
  • Offline Offline
  • Gender: Male
  • Posts: 14
Re: Xiaflex Length Loss / Gain ?
« Reply #11 on: January 30, 2022, 11:51:57 AM »
Quote from: Caseyjones01 on January 25, 2022, 01:29:12 AM
No, I lost about an inch to peyronies. Immediately after xiaflex, over a period of months pain resumed and penile shortening and more curving occurred, it is definitely from the injection, it is buckling at the injection site. So 2 inches from a 5.3inch penis with 60° downward left curve from 30°. I had hematoma and significant pain and tenderness constantly and was told not to use restorex if I had pain. Although it has come to my attention though that using restorex might have helped stop shrinkage even if I felt it was too painful to use, maybe so but the extra inch lost for me was definitely a result of the injection.
Really sorry to hear that. I am not sure how to explain that because my uro told me there's no risk of length loss with xiaflex. My best advice is to consult your uro and keep at it with the penile modeling.
Logged
31 y/o. 30 degree upward, and slightly leftward curve. 3 rounds of Xiaflex completed and praying I don't have to do anymore.

Caseyjones01

  • Voting Member
  • **
  • Country: ca
  • Offline Offline
  • Gender: Male
  • Posts: 78
  • 37 years old
Re: Xiaflex Length Loss / Gain ?
« Reply #12 on: February 14, 2022, 10:34:43 PM »
My uro has told me all kinds of things, even contradicting himself. The fact is they do not pay attention to detail because ur disease is the least of their concerns. Injecting into a penis you can injure the tunica and cause more fibrosis and that means replacing the tissue with scar tissue which doesn't stretch and will cause shortening, maybe continual stretching will help decrease it, but once there is damage scar tissue will start to form. Had I been explained this I would have not taken it. I was thinking that the side affects were risk of fracture, hematoma which would resolve and bruising of the penis that could last for along time, that's it.
Logged
37 Years Old
April 2019; pop sound from BJ
Diagnosed Sept 2019. Possible 2nd injury
Have 2 very large plaques and loss of size and girth
Pain for 2 years
Tried VED, Traction, Xiaflex
Pentox 3 times 2.5 mg Cialis daily started Colchicine 2/17/20
Pages: [1]   Go Up
« previous next »
 

Related Topics

  Subject / Started by Replies Last post
3 Replies
4420 Views 		Last post March 26, 2011, 10:43:53 AM
by jackp
2 Replies
4206 Views 		Last post April 13, 2011, 12:51:59 PM
by Luciano
10 Replies
1056 Views 		Last post November 04, 2020, 04:44:31 PM
by Pixie1002