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Author Topic: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES  (Read 2296 times)

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zman.sage@gmail.com

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MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« on: December 21, 2016, 02:10:54 PM »

DEAR ALL-

I HAVE HAD PEYRONIES FOR ALMOST TWO YEARS.  I JUST STARTED WITH XIAFLEX ONE WEEK AGO, TWO INJECTIONS WITHIN THREE DAYS WITH DR SAFIR IN SHERMAN OAKS CALIFORNIA.  IM HAPPY TO PROVIDE FEEDBACK BUT ITS TOO SOON TO MENTION THE RESULTS.  IT DOES HURT, DURING AND AFTER, ESPECIALLY AFTER THE 2ND ONE.  3AM NIGHT AFTER THE SECOND, I EXPERIENCED SUDDEN AND SHARP PAID(FELT LIKE TEARING) RIGHT AT THE PLAQUE LOCATION.  IM HOPEFUL THIS IS A GOOD THING.  LOTS OF BRUISING.  I DON'T REALLY CARE ABOTU THE PAIN OR BRUISING IF IT WORKS.

NOW TO THE ACTUAL SUBJECT OF MY POST.  PRIOR TO PEYRONIES, I HAD A 9" ERECT PENIS.  I WOULD ESTIMATE A GIRTH OF 3-3.5".  I HAD A BIG PENIS MY WHOLE LIFE.  SO DOES MY DAD AND MY BROTHERS.  NOW, ALMOST TWO YEARS LATER, WHEN ERECT, I HAVE LOST 3.5" IN LENGTH AND ABOUT 1/2 MY GIRTH.  WHEN ERECT, THERE IS A LARGE AMOUNT OF LOOSE SKIN AND A BUBBLE OF BLOOD/FLUID ON THE TOP OF THE UNDERSIDE OF MY SHAFT, JUST BELOW THE HEAD.  MY PEYRONIES HAS RESULTED IN FIRST RIGHT THEN LEFT SIDE CURVATURE, NOW HEAVY HOURGLASSING, BASICALLY IT HAS BACKED UP LIKE A CAR, TWISTING ONE WAY THEN ANOTHER.

MY QUESTION IS REGARDING THE XIAFLEX TREATMENT AND IF THE BREAKING UP OF THE MULTIPLE PLAQUES WILL HELP GIVE MY PENIS THE ABILITY TO FILL OUT THE REMAINING SKIN.  WITHOUT THAT, I HAVE AN ERECT INNER PENIS WITH A SLEEVE OF SKIN, MAKING SEX PRETTY LAME.
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mischa

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #1 on: December 21, 2016, 05:34:50 PM »

Dude, sorry bout your situation, loss of length and all. I do not have experience enough to answer your question. I would just hope you can regain some of what you lost. For guys like me starting with a 5.5 inch dick,  loss of 3\4" so far is devistating plus hardons not worth a damn. Have you talked to your doc about possible surgery down the road to tighten things up?
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Mischa😕

QuackAttack

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #2 on: December 21, 2016, 11:03:57 PM »

Zman,

At your next cycle, have your doctor give you a roll of Coflex and padded gauze and keep your penis wrapped the entire time between the first and second injection, then keep it wrapped for 3-4 days after the second injection. This will keep the swelling down. My Dr. started doing this with several of his patients in October/November and it is now standard protocol for him. My first cycle I didn't wrap more than 8 hours between injections and I had a lot of swelling, but I got Coflex after the second injection and my swelling was reduced. You are still going to have bruising. You should get length back if Xiaflex works for you, maybe not all, but enough to be satisfied.
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zman.sage@gmail.com

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #3 on: December 30, 2016, 11:47:19 AM »

Thanks.  i kept it wrapped for 2-3 hours as he told me to but ill keep it wrapped longer.  The pain after the second injection is way worse than the first.  as far as surgey goes, all i know is there is alot of crazy stuff out there and i think a full prosthesis is not something im ready to consider until i go through a year of xiaflex.  i have thought abotu looking into someone who can remove all the excess skin as now that i have shrunk considerably, i have alot of loose skin during erections so it doesnt really work.  im encouraged by the xiaflex and hopeful.  i think we all have to probably understand that in the best case, it will never be what it once was.  has had a serious impact on my marriage.  rough days...
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mischa

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #4 on: December 30, 2016, 01:52:23 PM »

Zman, sure sorry. I've only just begin this mess 3-4 months ago and already have lost 3/4" and girth in the dents and didn't start out large anyway (5.5). And the turtling has driven me mad in how itt feels. Not looking forward too the process. I see a urologist next Wednesday. Hoping for knowledgeable direction. I sure will pray for you.
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Mischa😕

pfract

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #5 on: December 31, 2016, 02:37:54 AM »

Hey... How are your erections after that sharp pain? You do know about the risk of a penile fracture? What did your doctor said in that regard? What support did he offered?
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popopo

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #6 on: January 01, 2017, 01:35:30 PM »

I'm sorry for you man. We need a solution dammit.. I felt small at 6/7 inch but since getting smaller I'm a f'^+'ing depressed psycho growing crazier with every meaningless day I manage to survive. Knowing how it feels to have a big dick it must be an even bigger shock in contrast.
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mischa

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #7 on: January 01, 2017, 03:26:22 PM »

popopo.... I whole heartedly agree! But I'm sorry I can't help saying. For those of us with "smaller" dicks, 6/7 would be like winning the pecker lottery! Starting at 5.5 with shrinkage is devistating. How much length or girth have you lost? If what a lot of guys are saying on here is true without the need for surgery, returning to or regaining some length is entirely posible. We can both hope. It's easy to get obsessed about it I know. I find myself stroking to hardon, such as it is, and measuring constantly. Driving me crazy!
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james1947

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #8 on: January 03, 2017, 06:45:48 AM »

Quote
...measuring constantly. Driving me crazy!
Stop doing that. Will not help you, just bring you depression!!!
Done it myself every day in the past. I was 7", lost more that 2", lost half of the girth. Got back 1/2" and some girth so now on 5"+, learned to live with it!
My biggest problem is ED, but still with 50 mg Viagra can have sex. Even I am 69, I am very active sexually and it helps me not to remember every minute what I have lost :)

James
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Kahuna31

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #9 on: January 16, 2017, 07:29:44 PM »

Started the program 2 months ago I've had 4 shots and use the VED once daily.  This seems to be working as I have gained back about 1/2 inch from my 5.5 but still curve I'm working on.  I'd say the Xiaflex works as the cartilage seems to be softer now than it was before treatments and have gain some length
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Kahuna31

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #10 on: February 20, 2017, 01:40:55 PM »

I have had the same problem........I did have 6 sessions with the XIAFLEX and has helped.  I have also used the VED which I think has stopped the shrinking.  I was told to now start  traction which is to help in recovering the length and girth.  I'm not sure what type of device to use thought.......any help out there?
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QuackAttack

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #11 on: February 21, 2017, 07:37:38 AM »

Kahuna,

I suggest getting a Penimaster Pro. It combines the stretch of all rod traction devices and the comfort of the Phallosan Forte.
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curved

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #12 on: February 21, 2017, 04:14:01 PM »

I haven't posted much but thought I would share my experience thus far with Xiaflex and share my side effects.  For context I was diagnosed with Peyronies in March of 2016 with an approximate 40 degree curvature downward and too the left.  Two palpable plaques could be felt, one on the left and one on the right side roughly half way down the shaft.  The plaques were most likely caused during intercourse where my wife was on top.  During my first visit to the urologist we discussed Xiaflex and he indicated we had to wait 6 months to ensure I was out of the acute phase.  During those 6 months I took the usual Vitamin E, Potaba (stopped after 3 months due to the expense and very limited data on efficacy), Pentox, L-Arginine, serrapatese, curcumin,etc. Even went as far as to start putting all kinds of vitamin E cream, castor oil, DMSO (word of caution ...don't go past 70% concentrate), etc. on my penis.

My first injection was mid August and was tolerable.  The needle is very thin and lidocaine was not recommended. The urologist applied pressure to the injection site with his hand for approximately 30 seconds and instructed me to go home and start the manual stretches. Stretch the penis by holding the base and pulling the head 3x day for 90 seconds.  Any NTE were to be gently pulled in the opposite direction of the bend.  I had my second injection 2 days later with no ill effects.  No sexual activity for minimum of 14 days.  No noticeable improvement after first 6 weeks.  Started traction the final 2 weeks of September per research done on this board.

The first week of October I had my 1st injection of my second cycle. Started modeling a couple of hours later.  Approximately 12 hours later I woke up in the middle of the night with a NTE and incredible sharp pain at the injection site (similar to the experience Gman was describing). The pain lasted approximately 60 seconds and was intense. It was pretty clear I suffered a hematoma (while I never had one before I had read this was a potential side effect).  I had an emergent appointment with my urologist later that morning and he confirmed a hematoma.  He indicated that a hematoma will form if a blood vessel has been "nicked" while extracting the needle.  No stretching or 2nd injection until hematoma went away and bruising subsided. 2nd shot of 2nd cycle took place 3rd week of October without any significant side effects (typical bruising). Continued traction after 3 days after 2nd injection. There was an approximate 6 degree improvement after cycle 2.  My wife reported that one slight indentention that I had at one of the plaque sites was not detectable at all. Had to wait until early January for start of the 3rd cycle due to scheduling and travel.

First week of January had 1st injection of cycle 3 with no ill effects. However I was a bit sore from the injection so I did not do any modeling between the first and second shots. Returned two days later and had 2nd injection and was instructed to start modeling right away which I did.  Approximately 5 hours after the 2nd injection I had the incredible sharp pain again and I immediately realized I was going to have another hematoma.  Additionally i had 4 more episodes, each lasting 60-90 seconds approximately 1 hour apart.  This was a incredibly difficult night.  The pain is drop to your knees, clench your teeth, start sweating stuff..... or maybe I have a very low pain tolerance... either way... it was scary for me.   The hematoma was much more pronounced this time and took just over 3 weeks to dissipate. I am unsure whether I will do a 4th cycle. I am speaking with my urologist next week to see if there is anything we can do to limit the possible occurrence of a hematoma.  Too date I have lost 12 degrees of my curvature and am now approximately 28 degrees.... indicating an approximate 30 percent improvement thus far.

My urologist has indicated that he sees the best improvement during cycles 3 and 4 so I will have to weigh the risk (hematoma) against possible improvement.

In my view there are certainly possible pros for Xiaflex ("possible" because results will vary):
1-bottom line you can get significant curvature reduction 30+ percent improvement

There are also significant risks:
1- hematomas suck and are scary... your penis looks like an eggplant
2- the shots can be uncomfortable.... i started using a prescribed lidocaine cream which helped a tiny bit
3- my penis is also darker now.... not drastic...but definitely noticeable

I went as far as to speak to someone at US Biosciences which is the company (or at least one of them) that distributes Xiaflex and got some concerning feedback:
1- There is no "one" protocol for administering Xiaflex....each urologist may be slightly different (e.g. some wrap the penis after injection and tell patients not to model for 2 days, some (mine) only apply pressure to injection site for 30 seconds to minimize possibility of hematoma (btw...that doesn't work too well); some prescribe 3x day stretching for 90 seconds, some prescribe 10x day for 30 seconds; some recommend traction or VED and others don't.
2- Hematoma will occur approximately 60% of the time. I couldn't help but deduce that both times I developed a hematoma was when I started modeling/stretching immediately or shortly after an injection.  I wonder if the immediate stretching could have caused, or exacerbated the hematoma and is this why some docs say to wait 2-3 days after injection to start modeling. I would think you would want to model as soon as possible to get the full effect of the collaganese but not at the expense of a hematoma which prohibits stretching for several weeks.

My advice is to investigate but make sure you go to someone who is certified by Xiaflex (mine was and I still had issues).... and if possible go to one of the docs mentioned on the board at the leading edge of holistic peyronies treatments (e.g. Lue, etc.).

Happy to answer any questions.
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QuackAttack

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #13 on: February 21, 2017, 09:31:16 PM »

Curved,

I start my 4th cycle on Friday. My URO actually has me wait for 2 weeks for modeling. I think he is being very conservative. I have been waiting one week. My URO has also sent me home with a roll of Coflex wrap and that helps with the swelling. Keep your package wrapped for 3-4 days and you will greatly reduce your swelling. You could also take 800 MG of Advil to help with swelling.
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curved

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #14 on: February 22, 2017, 09:27:22 AM »

Thanks QuackAttack.... appreciate the advice.  I am definitely going to ask for the Coflex wrap during my consult next week prior to the 4th cycle. Good luck to all.
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QuackAttack

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #15 on: February 22, 2017, 09:36:57 PM »

Curved,

Make sure to keep it wrapped and use a pen to mark where the tape ends or you will have a tough time getting it off. Also make sure to have a some cotton gauze to place between the Coflex and your package or you will be ripping wax off of hair if you know what I mean.
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curved

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #16 on: February 24, 2017, 10:50:13 AM »

Quack- Thanks for the advice.  Quick question on the coflex. Do you think the coflex wrap helps prevent a hematoma forming? I don't mind the swelling as much as the incredible pain from the hematomas forming which has happened each of my last cycles.  Thanks.
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QuackAttack

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #17 on: February 25, 2017, 09:16:09 PM »

If your URO nicks a blood vessel, no it won't. My last cycle I had a hematoma and it took two weeks to get completely normal even with Coflex on for four days. That was the only time I had any pain during my 1st three cycles. Just started my 4th and so far so good.
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curved

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #18 on: February 27, 2017, 09:36:50 AM »

Thanks Quack!  Best of luck with the remainder of the cycle.
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Rotis

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #19 on: March 07, 2017, 05:31:22 PM »

Quote deleted by moderator!!! Read the forum rules regarding quotes!!!
Answer by Reply button and not Quote button
Some of your posts were removed!!!

I have done mor or less extreme treatment compared to what I read here, I had 10 injections, first two times rounds of two, then my doctor said he believes one or two makes no difference so he continued in giving one at a time with 3-4 weeks in between. I have now had 10 shots and am really satisfied. Peyronies reduced my erectile length by 4 cm and I have now gained 3 back. Every shot gave a small almost not noticeable difference but together they made a huge difference. The side effects are ugly with swelling and purple coloring due to internal bleeding but that goes over within a week. After four shots I started to massage the soft tissue at the place of the injection heavily while stretching . I think that made a big difference. I strongly recommend you to try. The doctor I visited have been treating 4 patients and he says that all of them have had progress. I have some hourglassing still but the last shot made my glands fill with blood again.
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Tsanchez12369

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #20 on: August 07, 2017, 11:35:25 PM »

If one has plaques on both sides, will there be two sets of xiaflex injections each visit?
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QuackAttack

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Re: MASSIVE LOSS OF LENGTH AND GIRTH DUE TO PEYRONIES
« Reply #21 on: August 08, 2017, 11:02:43 PM »

Tsanchez,

No, your URO will do one of two things. Attack the primary plaque and spread it out across the entire injection or he will do the same thing but along both plaques. My URO concentrated on one plaque for the first four cycles, this cycle, my URO hit another plaque in the fifth cycle and spread it across the entire length of the plaque.
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