PEG w/ Levine 8 weeks ago, mixed results

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Pablo429

I just got out of my 8 week post operative follow up with Dr. Levine. So far the results are kind of inconclusive. Some good, some bad, ultimately I'm going to have to put in a lot of the work on my own during rehab to get the best outcome and that is going to take another 6 months to a year and a half before I really know how satisfactory my surgery ended up being.

First of all, my condolences and respect to everyone going through this absolutely brutal disease. It's a complete physical and psychological nightmare of which there is really no comparison or preparation for something like this. Stay strong brothers, we'll get through it.  

My Peyronie's Onset:
In September of 2020 an overeager female partner basically grabbed my unhard johnson and shoved it inside her, bending it awkwardly and BOOM that was the Peyronie's kiss of death. I woke up the next morning with the tiniest of lump's in the left side of my shaft (about the size of a pebble) and without morning wood. I knew something was wrong. It was covid though, hard to see a doctor unless it wasn't an emergency. I went to an urgent care and they told me I was fine since there wasn't any noticeable deformity. In retrospect I should've seen a urologist right away but I had no idea what I was doing or what was wrong so a person in a white suit telling me I was ok was good enough for me at the time. I went a full year from that point without any symptoms at all. I had another relationship that lasted about a year, again no symptoms. Once that relationship ended, I took a break from masterbation for about a month and then finally went to masterbate and as I was lying supine, I brought myself to erection and wouldn't you know it but my shaft was now totally bent, falling over to the upper left, like it was completely bisected. I had a hinge defect for sure and slow wasting on the lower left side of my penis.

Treatment:
From this point on and by now it was Spring 2022 and I was desperate to do whatever to fix this. I saw a urologist finally and they all kinda shrugged. They said the plaque was too far down the shaft to do xialaflex (not that I wanted it) and that I should just do traction and take viagra. My issue was not erectile dysfunction however it was structural, so this was a frustrating remedy to an issue that I did not have while at the same time, not addressing the primary issue (hinge, half hour glass wasting on left side, bend).

Despite this they were all just like, "yeah take viagra and do traction and we'll see, Idk". I additionally got a Phoenix gainswave and I got a PRP injection. That in addition to the traction and viagra I was taking, along with using Gua Sha daily, I did this all excessively and religiously for two years but my hinge defect ended up getting slowly worse over time. The curve ended up not being that bad (about 33 degrees) but the hinge and wasting were worsening and this was destabilizing to the entire shaft. I could feel the plaque getting larger and when I moved back to Chicago recently, I looked up Dr. Levine who routinely comes up as the preeminent authority on plaque excision and grafting (which is what I already knew I needed). I had an appointment with Dr. Levine in September of 2024, he said I was a good candidate for the PEG procedure and I was booked on 11/18/24 to get it done.

Surgery and Post Op:
I went in for surgery, got put on the table took two deep breaths of whatever anasthesia they put over my mouth and the next thing I knew I was waking up and getting ready to leave. It was instantaneous. I had a huge dressing on my shaft on what looked to be a full boar erection size and length just not erect. It looked good and girthy and length was the same if not a tad more (I was at 6 3/4"-7" full boar erect prior to injury and it seemed that length post op). Being that I'm single and unmarried, the people that took me to the surgery were my parents and when I asked them what they said about how my surgery went and what they did, my parents could only say "they said it went great" not a ton of detail there. Basically they did the surgery then Levine and his associates dipped out. There was nobody there post-op to tell me what they did or how it went, which was disappointing. I definitely was very eager to know what happened and was not able to learn that.

I eventually removed my dressing after 3 days and I was surprised to see that the right side of my penis, now had a notch in it. Additionally, the area where the plaque was had no graft over it. The graft was above. This was disappointing as well because I was hoping to replace that plaque with graft tissue and now all that was there was skin and tunica. It still had the feeling of bisection but I was ultra disappointed that for some reason now, the righthand side of my penis which was seemingly perfectly healthy, had had some work done on it and this I was not prepared for. Later on that week I moved over slightly and felt such a rush of pain from the right side of my penis that I dared not move abruptly. It definitely seemed like I had been plicated on the right side of my penis and that there were stitches there. All of the above were extremely confusing and disappointing to experience.

I had no issues getting erections basically immediately which was a great sign but my major issue upon seeing my erections was the MASSIVE HOURGLASS
Peyronie's from sex injury in 2020, up and left curvature of 33 degrees with hinge/half hourglass,  traction/PRP/gainswave for several years without any improvement, eventually had PEG procedure with partial plication surgery with Dr. Levine 11/18/24

Pablo429

cont. So upon seeing this massive hourglass shape of my penis my natural and core response was..."What the F???" I had shown up with half an hour glass, and now had a full one. In addition to that, my penis was about an inch shorter. Was I straight? Yes. Was I able to get hard? Yes. But my shape was unacceptable and naturally I completely freaked out. My freak out was not abated at all by Levine's office either because nobody really explained to me what in the heck procedure was done to me, and nobody had any of the operative notes. Additionally to make matters worse, I had an allergic reaction to the antiinfection ointment they wanted me to put on incision site and I had full blown dermatitis on my penis and genitals for a week which was miserable.

Again, that all could've been pre-empted but it wasn't. It had to get so bad that they were like, "huh maybe you should stop taking the bacitracin" and in my mind I was like "watch they're gonna say take benadryl" and sure enough they were like, "you should probably take benadryl" lol!

About 6 weeks in, I finally got so overwhelmingly horny that I just had to masterbate. I honestly couldn't take it anymore. This was two weeks ago and the orgasm was an 11/10 and absolutely I'm super straight and hard but my shape is non-uniform and hourglassed which I was 100% not prepared to see or experience. I was prepared to lose some length but I had no idea girth loss and new deformity of this nature was a possibility to this extreme.

In week 6 as well, which was approximately two weeks ago, I started doing about 2-4 hours per day of traction in addtion to bringing myself to erection for 5 minutes a time about 3-4 times daily. I have to get used to the new hardware of course.

So today, I finally saw Levine and he stated they had to remove a 5 centimeter piece of plaque that was causing my hinge and deformity. He ultimately had to plicate the healthy side of my dick for additional "caliber" (whatever that means) but to basically make sure I'm ultra straight. To address my hourglass deformity, Levine thinks I should start using a Vaccuum Erection Device 3 times a day. This should help fill out my shaft and help bring me to uniform circumfrence in addition to doing the traction daily.

I'm going to stick with this plan and....we'll see. I have no true answers right now and I'd be lying if that wasn't frustrating to deal with, still being in the dark on all this and how it's ultimately gonna go. I have a follow up in 6 months to see where I'm at and at that point I'll appropriately update this thread. I'll do the same thing again a year from now, and then a year and a half from now. Quite honestly, I don't care about my length loss. I should get some of it back with traction, no big deal.

My main and only gripe is just the narrowing and hourglass shaping of my penis post surgery. If the girth that I have in the top portion of my penis is somehow able to become uniform throughout, I could possibly have an even better penis than I had pre-peyronie's. However it's gonna be a long haul.

My greatest fear at this point is that my shape will never fill out and that in a year to a year and a half, I'm going to need an extra tunical graft to shape out my penis finally and I'll once and for all be done dealing with this miserable nightmare. I am indeed still deep in the process and am nowhere near out of the woods even 2 months post surgery. I'm prepared to do traction and VED daily for the next year to year and a half. The last thing I want is ANOTHER surgery (the surgery and subsequent weeks after are absolutely brutal) but I am willing to do one more pass under the knife if it will mean I have final uniformity and stability in my penis.

My question to anyone reading this: Have you had a second surgery to fix any new deformity from your first surgery? Does anyone have any experience in receiving an ETG after having a PEG procedure with plication? I am going to keep my options open. I finally got my operative notes back and will shop them to other surgeons over the next year as I'm not sure I will or would want Levine to do the ETG if I need a second surgery. I'm keeping my fingers crossed I won't need a second surgery and hopefully consistent traction and VED will fill me out over the next year. We shall see!

Peyronie's from sex injury in 2020, up and left curvature of 33 degrees with hinge/half hourglass,  traction/PRP/gainswave for several years without any improvement, eventually had PEG procedure with partial plication surgery with Dr. Levine 11/18/24

Sonic

Wow that really sucks. You were basically promised PEG surgery, seems like that is what you had agreed upon however during the operation you were also plicated on without consent, am I understanding this correctly? I understand how that makes you feel so dissappointed and rightfully so. Well based on what you are saying it seems you are very straight now but suffer from narrowing..

I do not know how much of a difference traction would do when you are already straight and I doubt traction does very much for narrowing, I would only recommend sticking to the VED but you do whatever feels best for you.

You already mentioned it but extra tunical grafting is always there as an option, however... Just remember, the more surgeries you have downstairs it will only cause more issues and potential problems.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

Stepone

I had a surgery to fix my 45 degree angle, hourglass, and hinge, where I broke my penis.
It worked, except it left me with a reduction in length and girth. I was not happy. My surgeon lied to me, as he said I would not lose length or girth.
Several years later, I got an implant which restored and increased my girth, but only recovered about an inch in length.
I don't know if you have any other issues.
But needless to say, I wished I had not waited for the implant, nor do I wish I had the first surgery.
STepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC