TOPIC: Peyronie's Disease & PMMA Journal

Hey Everyone. I have read though many of the posts on here, and they have been really helpful for the past few months. I thought I would share all of this, even though it won't apply to most people. There is a Peyronie's Disease (PD) board out there, but there's not really a progress section there & they don't discuss reconstruction / PMMA / size restoration...and my posts (after today) will be about getting my size back (unless people have PD questions, I am happy to answer). I can't get PMMA for a few months until I am healed from surgery, but I definitely want to do it...and I will likely do traction to get back to where I started (or more if it's possible).

Before reading this board, I was not even sure I wanted to get surgery to fix the PD I had because I sort of thought my Dick was a lost cause. I was incredibly depressed over what Peyronie's disease did - and I never thought it was possible to get back to normal. This was one of the shittiest things that I've dealt with and I am surprised I am even posting about it in detail online bc of how sensitive of an issue it has been...but maybe there's value in this to some people. If Miracle8x7 hadn't posted what he did, I'd still be where I was a year ago - miserable w/ no hope of improvement. Every day, urologists tell people with PD that they have no hope of improvement...it's really not true. Though honestly, every treatment failed over a 4 year period, I did not want to risk surgery. After reading posts here, I realized I might actually have chance at some kind of meaningful recovery if I got things started with surgery like Miracle did.

Since I have a lot of pics - I'll walk through my back story in a couple of posts, so the pics are sort of "in-line" with what I'm talking about without getting too jumbled, hopefully.

Anyway, I started off with a reasonable penis - about 6.5 EL x 4.5. I always thought it was thin (well, it was thin) but it wasn't something I was that concerned about since the options at the time (fat, alloderm) weren't reliable and were very very expensive. This pics attached to this post were the starting point - before any PD symptoms. I had a curve (since puberty) of maybe 10 degrees. There was no plaque here - this is not PD yet.

Around 2008 - I noticed that I had a lot of Turtling...and I would be sitting and feel my Dick completely crawl up inside me. It was weird. I stopped waking up with morning wood. I only got 60-80% hard when masturbating. These were issues I should have paid attention to, but I wrote all of this up to stress, aging, and use of sleeping pills. The size and shape never started to change until 2010, when I noticed dents on either side, practically overnight. I also started to feel ridges...which I depicted in the pic below. Back then, I had no clue what PD was. I emailed these pics to a Urologist I saw on TV because Ithought I had a cosmetic case, and this Urologist was on Dr. 90210 (Dr. Alter) - I really just thought I developed some strange dents. He told me that was probably PD, and I should see a doctor in person.

You can get an idea of what Peyronie's did to me in about a year in the pic below. This was before any treatments.



Medical protocols are constantly changing, and most urologists insist that you need to wait a year before doing anything bc the disease can progress & treatments (like surgery) will have to be redone. Most people stabilize after a year. These days, they should give you trental to slow the inflammation and possibly reverse the disease, though it is not a miracle pill for anyone really. Since I had about a year of symptoms, I was able to start verapamil injections with a Urologist trained by one of the top PD specialists...though I do not think his technique was the same. Also, traction was recommended. I bought a traction device, and I was able to get back to about 6" (which I would repeatedly lose and gain back over 4 years - my tunica had thickened - as I was told after surgery - so that explained why traction wasn't as easy for me). I spent about 6 months getting verapamil injections, and I wanted to post pictures of the swelling because some of it (particularly the circ scar swelling) is similar to what some of you put in your PMMA journals. This was mostly just saline, but the penis responds similarly sometimes (and these injections were rough because they stab the plaque repeatedly). The photos are from different injection days over the 6 month period - not progress pics. I had no benefit from these treatments at all. Most people do not benefit. This is the protocol for the injections my doctor followed:A standardized dose of 10 mg of verapamil (5 mg/2 cc) diluted to 10 cc total volume with injectable saline is used. The solution is distributed throughout the Peyronie's plaque using a 5/8-Inch, 25-gauge needle on a standard 10 cc Luerlock syringe. A smaller gauge needle is not recommended, as this may increase the risk of needle fracture. Also, the 25-gauge needle allows for a large enough tract in which to deposit the drug. Prior to drug injection, a penile block is performed with 10 cc 0.5% bupivacaine without epinephrine. In some cases, a second penile block may be required. The plaque is grasped between index finger and thumb, and a single skin puncture is performed. The needle is then passed in and out of the plaque while leaving the drug within the needle tracts. In men with large plaques, the needle may be removed and the process repeated

At this point, verapamil had failed completely...and I was out of options other than surgery. I heard about the Xiaflex trial (collagenase enzyme to dissolve the plaque via injection), but it filled up with patients already. So, I thought I would wait for Xiaflex to be approved before risking surgery while using traction and taking Trental. During the 3 years I waited, my plaques virtually disappeared. However, my curve and narrowing got much worse. My ED got worse. My doctor also said I was no longer a candidate for xiaflex (there was nowhere to inject since the plaques were gone). The damage had been done by PD. PD destroys elastin too, and it can also scar your septum, where xiaflex cannot be injected... maybe if Xiaflex was already out in 2010, I could have been saved from surgery - but this was not an option. It was only available to plastic surgeons who did hand surgery - and they could not use it off label. It would have cost 26k to use it off label anyway (with no guarantee of success)...so I was not able to get it off label.

This is how the PD progressed up until the surgery. Psychologically, this messed with me pretty bad. Imagine 3.7" Girth...



There are 3 surgeries available to people with Peyronie's Disease. I had # 1.

1. Plication / Nesbit / Modified Nesbit / 16 Dot
These all have the same principle with slightly different approaches. They shorten the longer side. The damage in my penis was mostly on top...so the top shortened by PD to 5.2" but the bottom was still 6" or so. Hence, it curved. So, by tucking / cutting small ellipses of tissue from the bottom and suturing them together, you get a straight penis. You don't really risk ED or sensation loss. You do risk size loss. I lost 0.5 cm. I might be able to get it back with traction.

2. Grafting
This is what Miracle8x7 had. You need to have strong erections going into grafting surgery because the risk of ED is significant, and I did not have good erectile quality at all. Also, you need a well defined plaque to excise. Finally, you need a VERY good surgeon or you can risk sensation loss, size loss (it happens with grafting too) and ED. It's much more complicated than plication. It takes 2x as long in the operating room, at least. The other thing is that my damaged tissue was on top, right under the neurovascular bundle. This is the riskiest area of the penis to deal with - so doing grafting right below that risks sensation loss more than in other areas. This is the most common area for plaque, so surgeons know how to deal with the nerves...but it's still a bigger risk than plication.

3. Penile implant
This is the point of no return...once you do this, you can never have natural erections for the rest of your life. Since these need to be replaced every 10 years or so, I was looking at 3-5 implants for the rest of my life...and never having a natural Erection again. They do help fill out your Girth and restore some size, especially when combined with grafting...but it all depends on where your damage is and how bad it is. You could lose a lot of length with these too.

I went for plication for 2 main reasons. 1 - you can see my entire penis starts to get narrower in the entire shaft - over time. I did not have 1 localized narrow segment that could be repaired. A surgeon cannot remove tissue from the entire length of the penis without a huge chance of ED. There was a possibility that I may have had to have a very large excision. If I had grafting in 2011, it might have been successful at restoring Girth...though it's hard to say because my disease progressed. 2 - I had ED. I had a 5/10 Erection anytime I did not take viagra. In the last year, viagra only got me to 8/10. I am not happy I lost even more size, but fortunately it was limited to 0.5 cm. In a perfect world, I would have had grafting surgery and regained Girth and length, but the ED risk seemed too high. I still wonder if I did the wrong thing. Maybe I only had a small area of scar tissue (my last ultrasound showed a tiny plaque) - and if it was taken out - everything would be normal. My doctor didn't seem to agree...and he has done 100s of these cases. After reading this board & learning about PMMA, I figured I could just do plication and then get PMMA to get my Girth back. Traction may help with length.

Here's how things are now...by the way, this was the most painful experience I have ever gone through - and I broke my nose and jaw (and had surgery on both with screws in my jaw). No amount of norco even helped me. I started taking gabapentin with norco and soma and that seemed to at least make me somewhat ok...but I was basically in a constant state of feeling like my Dick was being skinned alive for a few days. It still hurts at the incision line, mostly. I know I get erections at night now because I wake up in some serious pain every time they happen. I have no sensation loss, and the swelling didn't linger too much past day 10, though it will take 4-6 weeks to be normal...and maybe 6 months not to have pain. I am scared that I will have pain on erections due to the internal knots, but I can't worry about it too much now. Here's the latest pic:



So...from here... I need to heal up and start using traction after 4-6 weeks post op. Then, in about 4-6 months, I can start PMMA.

Anyway, if you have any questions, I'd be happy to answer them. I've really gone through 4 years of hell and was stuck there until I started reading this board. It might sound like I am putting too much faith in PMMA - but it is the ONLY thing that offered any hope in the last 4 years of total misery & having every doctor tell me my Dick is "normal" and "average" - and just deal with it (which is bs - 4" Girth is not average). So anyway, this board makes me feel normal too - since some of you crazy dudes START with 5.5" Girth and want PMMA to be 7" but that's fine. I want a big(er) Dick again & that's why I'm here. The 4 year nightmare is over...I lost a huge chunk of my life (and Dick) and am still single because of it... and now it's time to get back to normal. Woo hoo. I feel like I just wrote a research paper.

Sounds like you've had a rough time of it. Thanks very much for sharing your story and I'm sure it will be useful to many of our members. I've got a similar curve due to scar tissue from Removal of fat, but mine is at the base, so it isn't so bad. I have a very high Erection angle because of it, but it's much better to have it there than at the end of the penis.

Good luck with your recovery.

hoddle i sent u a pm bro

Thanks hoodle. Have you been looking into getting rid of the bend or are u ok with it? Some bends will respond to traction and pentoxifyline, but it's not a magic bullet at all...sometimes it helps with EQ / ED and gives a little progress w/ the bend.

I really hope the story is useful (sorry it was so wordy)! It took a while to find all the pics, resize them / line them up, write the story - but it's worth it if it helps people in the same way Miracle's posts helped me. I PMed SkepticalOne that you guys are amazing at keeping trolls out - or I'd never ever post this kind of personal stuff. It's really a sensitive issue and I've been incredibly depressed over it...so thanks to you too!

I'll update when I'm further healed too...it's looking ok - the scab is stubbornly Hanging on, and I don't think any Sutures dissolved...and boners HURT - but it's still early days.

Restoration,

Sounds like you too have been through hell. I had grafting with Dr. Paulo Egydio and it restored my length and Girth. There are photos in my PR. So happy you're recovered and sharing your experience. Best wishes in achieving your goals.

M8

Thanks Miracle. I would not be here if it weren't for your posts and this board. I seriously had 0 hope of ever getting back to normal - and partly bc the docs would say "you won't look like you did before". Egydio gave you incredible results. You must have been so happy. I have a mild regret about not getting a graft, but the issue of ED was always raised when I mentioned grafting. So, plication was the only option left since I did not want an implant.

Now, I have perfectly fine erections (but it's supposedly altered during the post-op phase & things are more sensitive) so I really wonder if I could have gotten a graft. I should have asked my surgeon to go in and just make the decision when he was in full view the tissue. It was very hard to determine, in the office, just how much plaque I had vs. how much tunical thickening & inelasticity I had. My plaque was most present in the first 2 years & started to thin out to the point that we weren't sure there was enough to graft. It also went in the septum...we think.

How did you get so much length back?

Hey SmallJay - Sorry I didn't even notice your post until now. Thanks a lot for writing that. I really appreciate it - especially now that I just had some insane stuff happen today that I posted about in the love/lust forum - so my fortitude you mentioned was tested alot. We sorta did go through the same things. Miracle's posts had the same effect on me that SO's had on you...I was pretty much at the end before I read his stuff. Btw, when you mentioned stretching rather than traction - I actually didn't know there was a difference. Is stretching the same as the bib Hanger? They said I could do traction at 6 weeks but it hurt like a bitch so I stopped... and some size already came back on its own - just post op retraction that released...etc...Anyway, I wanted to post another update today because I took some post op pics. I'll take some better ones when my camera is charged fully (too hard to do with phone - need timer).

It looks like there was more shortening than there really was... because they took a lot of length off the bottom (the top had already been scarred about 1" I lost) - so it looks shorter. Miracle8 has similar pics posted in his log... his results are a little better on the length side because he had a graft, but I had ED and was not a candidate for a graft - they thought at the time. I question it now, but it's over with. Also, not everyone who gets a graft will regain size...it's a very odd disease.

Time will tell if I can get more length back - there are a lot of Sutures and knots under my Dick - so stretching suture material is probably impossible, though the tissue might still move. The tisuse on top is thickened from peyronie's (my doctor said post op) so that's partially why it won't stretch well. That doesn't mean it's hopeless...it just might take me 2x as long.

Anyway, here's a before and after - I'll take clearer ones soon. I have to use a timer to get the side view, and my camera never focuses right with that. I have some top ones I need to do side by side.

SmallJay - thanks a ton man - that was really helpful. I feel like an idiot for thinking stretching and traction were the same thing. Well, I definitely agree Girth is going to affect the perception of "size" - i mean nobody with 6.25 BPEL x 5.5 eg would be said to have "the smallest Dick I've ever seen in my life" - so yea, Girth was definitely an issue here. 4.25 is just way too small...i feel like I deserve to be done with all this for going through all the crap I did - but nope - back to square 1 really. Oddly enough, I had 4 years w/ the same size (AND major curve) - and nobody ran out of my place with an emotional breakdown...though this was someone in their 20s with limited experience w/ guys. Anyway, so I basically have to gain a full Inch of Girth from PMMA or even more. I guess that's possible from other posters experiences. It is just a long ass waiting period. Notsureyet & DWD have awesome journey threads - so yeah, there's definitely hope on the horizon. New1inch also did a good job....though like you said he's got more resilience there than either of us do probably. My Urologist wants to see me 4 months post, and hopefully he'll say everything is ok - then maybe i'll push up Dr. C a month. It's not like Dr. C can hurt anything to my knowledge - he's going on a different plane entirely (in the fascia - not on the tunica). It might aggravate the healing though to have all the swelling there again. Dr. C thought 3 months is fine.

The stretches you described are actually not even that different from the stretches my doctor asked me to do post op after 6 weeks. He is against JelQs and stuff, and he didn't say to use the ok grip (i did thunders beginner routine years ago - or maybe it was a peyronies routine i found on there) - but doing the different angles & making sure you gave it some time, etc... is all what he wanted so I didn't retract even more from the surgery. I still have swelling & pain, even this far out - so I'll be on the beginner's lightweight plan for now. Mild stretching is ok...they said traction at 6 weeks was ok even....but it hasn't been comfortable at all. Thanks for that link. I don't really have pain normally, but after an orgasm it can be annoying as hell for up to a full day. It's getting on my nerves this far post.

Here's a few other questions:

- Is there a infared lamp you'd recommend or PE guys use? I looked on amazon and the one that looks convenient is $100 because it has a base...but it's kinda expensive. Another set of lamps have bad reviews or are handheld which would be hard to use evenly while stretching. I think it could help w/ the healing process, so I'd definitely get one.
- Do you need lube for the stretches u described? (I kinda hate using lube cuz it's more of a mess).
- Are you supposed to be totally Flaccid or have a semi?

- I havent found a clear answer on the board & might need to make it a separate post, but is lengthening an option post PMMA via stretching? It looks like Miracle still got length after this. I can't figure it out if it would thin out the PMMA results or something. I assume a noose traction device would create a dent.

I want to reiterate what smalljay said about 'perceived size'. Before PMMA when I was at 7.5x4.75 or whatever I sheldom got comments that my Dick was big. It was above average in length yeah, but length is sorta pretty subjective to measure visually and 'feel', and since my Girth was on the low size it gave me a 'smaller' feel.

Now that my Flaccid Girth alone is pretty close to 6" my Dick has a huge fat look and feel before anything even gets started, it riles up the other person in a big Dick mindset and thats the perception of it after. As long as you're not below average in length I think the perception is just big and fat, not short and chubby. Additionally volume wise a thicker Dick is gonna often be bigger than a longer one.

Well, time flies. It's getting close.

I took some before pics. I might post everything later... with new pics bc these aren't great...and I don't like the way it looks. First, my curve came back 10-15 degrees which my doctor warned me about on day 1 anyway and said is normal. Nevertheless, it still hurts at the stupid plicaiton nodes (where they basically stitched the bottom of my Dick together so it wouldn't curve) mostly after orgasm...and there's no way to touch those nodes once I am post PMMA. I think I just have an ugly Dick... It looked good when it was 100% straight and still swollen from surgery and all uniform. Now it's thinner and curved again (which a lot of guys are - but it looked best straight and smoother). Maybe I'll feel better if the PMMA goes well.

I don't know what to do about this whole 10/30 thing. JimmyJames and JohnThomas both have journals that make me very concerned though BrunoXXX and Honzeee and oberc looked very good (though oberc did better after r2).

My measurements are a little hard to pin down depending on how I measure and the EQ (and some curve is back which adds to the complexity), but here's the latest.

On 10 mg Cialis:
Neck Girth (where peyronies damaged the tissue - you can feel it when Erect): 4 1/8"
Base Girth (where it feels normal): 4 1/2"
BPEL with ruler on top & penis curved: 6.0 -or- 6.5 if I bend it so the curve is gone. It's almost 7 if i put the ruler on the side, but I think that's the cheating way to do it. Regardless, all that matters is the change (if there even is one) - so I want to be consistent.
NBPEL measured from top left: 5.5-6.0 but I need to loose 15 lbs. This is measured w/o unbending the curve.

I might do all of these measurements again w/ viagra and centimeters... I don't know... I want more reliable stats.

Anyway...it's coming up... and I'm not quite "excited" - just kinda feeling like I did before other surgeries I've had...nervous isnt the right word - more like ... why am I in this ... why do I have to be in this damn ?

Btw - thanks for the above posts... I didn't notice this earlier. Yeah overall size/volume has so much to do with perceived size vs. just length.

It's done...26cc of 10%. Because of some of my anatomical issues (scar, very uneven Girth) and my goals (just 5" really) - we decided on 10. Wade and Dr. C both agreed. I was surprised 26 fit in there. You see the white line above the freckles on the left side (prior post)? That's where the PMMA won't stick...and we're trying to mold it in there. I have a little scar there from where I had a very odd sebaceous gland that I popped like 10 years ago. Weird weird....thats in the dermis...Dr c went right through the scar of my deglove...he didn't have to work around it.

I had a hell of a time trying to massage this thing on my own. I am going to let Wade work his magic hopefully tomorrow because it looks like a hot mess. I tried to fix it - and this took hours...bc part of my tissue isn't letting the PMMA in without a major fight (and without all of it bleeding out since the insertion points are still open). What is wrong w/ my Dick!?! FFS it would be easier to have a sex change at this point...and avoided the last 4 years.


Silicone sleeve removed 1 hour after

A few hours after massage



About 4 hours after minor massage (mostly trying to undo the folding)...not looking good. No clue why it's doing this. Peyronie's affects tissue below where Dr. C injected...shouldn't be related. My skin was also fine w them...not too tight or too loose.

Hey restoration,

That's great that they got so much product inside. Doesn't look too bad to me.

If you're concerned, check my thread during my first round. The appearance is similar but mine was a lot worse. I saw wade, he rearranged stuff and it was all good after that.

Fingers crossed he gets you sorted. And don't forget, most round 1 issues can be resolved next time round, no panic.

Keep us updated and take care of yourself

Hey. Thank you so much for posting that. Your pic was really pretty shocking back then! I am really impressed they got it back to being so normal. Wow. Did u wear the silicone sleeve or the esl40? What kept it from having that dented midline come back that we both have? I actually just wrapped the wider areas tight and the narrow areas loose and slept and it seems to have worked ok...still a little funky and instantly wanted to go back to
How it was when I took the wrap
Off. I put the sleeve back on now. I think wrapping is better in my case though well see.

Btw I have lumps at my base too and they're sore but I'll ask wade today what to do. It almost feels like a ring around the base. What did u do for your base? If it's hard to explain ill just ask him anyway. Thanks again for posting - it really helps to see. Your final outcome and story are great.