AcmeEric's Journey

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AcmeEric

I'm 47 now but my issue with Peyronies started when I was 41. I have no health issues whatsoever. I workout and run daily. I eat fairly clean. I have no high blood pressure, cholesterol or diabetes. I'm just a normal 47 year old. It seemed like overnight my penis developed a hard curve to the right. There was no "event" that caused the curve but it was extremely embarrassing to even show my wife of 15 years. I like most everyone on this forum googled what the issue could be and discovered that Peyronies was most likely the culprit. I scheduled an appointment with a urologist and hoped for the best.

My first meeting with a urologist resulted in him telling me I should take a bunch of vitamin E and give it a year or two. He said it may go away on its own. I'd like to know the percentage of Peyronies that goes away on its own but I bet that number is extremely low. Any way, I did what he said and it seemed the problem only got worse. Keep in mind that I am embarrassed of my new deformity so my wife and I are no longer having sex. That led to a LOT of other issues I won't go in to here but I will say, if I had it to do over again I would be more aggressive in fixing this problem just for that reason. A little tidbit about me, I own part of and run a company that deals in the engineering, design and manufacturing of aviation parts. I HATE when I give someone a solution and they tell me how it won't work so I tend to just listen to and go along with people in a different profession that is telling me what I should do in their field. Looking back it didn't work out for me this time.

After two years I sought the opinion of another doctor in the area that specializes in Peyronies and ED. She suggested Xiaflex to break up the plaque. I read the statistics and decided to give it a shot even though I didn't expect my penis to ever be back the way it was. Anything was better than nothing at the time. I went through the Xiaflex treatment and me personally, I would rather run through hell with gasoline underwear on than to do that again. The second to last round of injections, something busted and I seriously thought my penis was going to explode. I called the after-hours line at the urologist and I was sitting in the parking lot of the ER when they called back. I was told that the ER wouldn't know what to do, that this happens sometimes with Xiaflex and that it will be OK. So, I went home, my penis didn't explode but when the dust settled I now had narrowing around the base of my penis. I am convinced that the reaction I had to the Xiaflex that last injection caused more plaque to build so now I had not only the curve to the right but the narrowing, hinge effect at the base.

I took a break at that point and almost resigned to the fact that my issue was here to stay. Fortunately I found this forum and started doing some reading. I went back to my urologist and asked if surgery was an option. Whether it be a graft or implant I didn't care. I just wanted to be done. She suggested one more round of Xiaflex. About that time I reached out to Dr. Lentz and scheduled an appointment. I saw him this past February and we agreed that an implant was going to be the best option. Of course initially he was hesitant because I could still get an erection. The problem was, the erection wasn't stiff enough to overcome the hinge I'd developed.

So here we are. I go in for an implant tomorrow morning. Dr. Lentz from Duke will be doing my implant. Up to this point he has been absolutely amazing. He's very knowledgeable and takes the time to talk through any and all questions I have. If I have any advice for "younger" healthy men going through this I would say be aggressive. You have to advocate for you. This forum is a GREAT place to gain info from guys going through the same stuff. I man with an experience trumps a man with an argument all day long. The doctors out there are good but it's best to talk to actual people going through it.  
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

Indenialguy

Good luck buddy, I hope everything goes well for you. Make sure you update regularly, but don't obsess, healing takes time with anything.

You got thisb👍
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

AcmeEric

Post Op Day 1:

Everything went well. I have to start by saying that everyone at Duke was great. From the admitting team to the RN that got me ready they were all fantastic. For me it was a tough surgery any way. I've had a bunch of different surgeries for torn rotator cuffs and a broken foot and none of those effected me mentally like this surgery did. The decision to go with an implant is final so that weighed on me heavily. I said all of that to say, the staff at Duke helped ease that anxiety.

After the procedure Dr Lentz told my wife it was definitely the right decision to go with the implant. He used a 22cm Titan which honestly doesn't mean a whole lot to me. When I first started my research I read that you never get your length back so I kinda just stopped reading anything about that so as not to enact in expectations. My only desire is to have a penis that is not deformed and works. Dr. Lentz says we accomplished that.

I was also extremely worried about the 3 hours car ride home after the procedure but even that was easy. We stopped and got Chic-fil-a and I even went in to the bathroom with my bandaged penis protruding like an erection. I had to go though! I ate in the car and we made it home.

The pain so far has been very mild. I've alternated Meloxicam and Acetaminophen during the day and at night I took an Oxycodone. I don't like the way Oxycodone makes me feel so I do that at night to sleep. I've actually been answering emails and jumped on a conference call today all while laying in bed. From what I understand laying flat as much as possible sets the trajectory for recovery so I have been good to do everything I was told. I know the pain will come at some point but so far it hasn't been what I expected. Nowhere near how either of my shoulders hurt after those surgeries.

Now to the bad part. Peeing has been ROUGH. I imagine it has something to do with the catheter but it burns like crazy when I pee. I guess my penis is also swollen so it restricts the flow pretty bad. I pee in to the jug that they gave me and I wrap toilet paper around my bandages to hopefully catch anything that runs down to soak the bandages. Sometimes it works, sometimes it doesn't. By tomorrow when I can take the bandages off they are going to be pretty nasty. That's been the worst part which is honestly not that bad.

I've read numerous times on here that this is a marathon and I know I am at mile 1 and the hard part is ahead. But I will say as of right now I wish I would've done this years ago.  
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

JustAGuy2020

Hey Acme, my situation was a lot like yours (significant bend and hinging) but I went through a failed incision and grafting followed by implant a year later.  In retrospect I wish I had done the implant from the beginning.  Having been through the recovery it sounds like you are doing OK and I was going to suggest using the plastic urinal which it sounds like you are doing.  I am not familiar with Dr Lentz but have heard good things here on the forum.  Take it easy and follow your doctor's advice, after a few months things will be much better!
55 y/o, Peyronies Disease onset 2018, diag 2/19.
Pentox failed, Ref to U-Michigan, doppler showed 45D right curve and 80D dorsal w hinge effect.
Incision/grafting/plication at U-M 9/20 failed.
Implant / graft repair with Dr Levine (Chicago) 9/21, successful so far

jj21

Congrats, please keep us updated.

I noticed you said that most people don't gain their length back... I'v read plenty journals where people (with cycling) were able to at least have the length they went into surgery with... In some cases, pre-peyronies or close to length.

J
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

AcmeEric

JJ21,

I read some of those too. But then I read some case studies that stated that you couldn't get your length back so I honestly quit looking. Dr. Lentz did make the comment prior to surgery that he would try to maximize the device so I had the feeling he would try to get me as much length back as possible.

I will admit, I did read almost everywhere that you can expect some added girth which got me more excited than anything. From what I've read on here it will only get bigger from today. That's promising!
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

AcmeEric

Post Op Day 2:

I got to unbandage everything and take a "back shower" today! That's exciting for me because I am usually a 2 shower a day guy. Today is also the day that I get to move around a little more. I've done some of that just for a change of scenery but will admit that laying down with ice on my boys feels best.

After taking the bandages off I was surprised to see a slight curve to the right still. I imagine that will go away when I start to inflate and deflate in a few weeks. The craziest part was pulling the drain out. They had that bad boy wrapped all inside my sack and I felt every bit of it as it came out. Didn't hurt at all...just weird.

The pain is still very tolerable. I'm still just using Tylenol during the day mixed in with Meloxicam. The Oxycodone at night is key right now for me too as I don't usually sleep well at night so it's helped tremendously.

I'm not a huge fan of the jock strap they gave me to wear. It kinda digs in to my legs and I'm not wild about my but hanging out like that so I ditch them early in the day in favor of some bikini briefs I use for running. They're extremely supportive and keeps my semi-erect penis pointed at my belly button. From what I read that is the goal right now. If I'm doing it wrong please chime in. This, more than any surgery I ever had, I want to get right!
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

JustAGuy2020

Yeah, I stayed overnight in the hospital after my surgery and they pulled my drain and cath while I was there, definitely a strange feeling.  I would not worry about the slight curve you are seeing, its still early days and with cycling you should be able to straighten more.  My Dr. (Levine) told me before surgery that he would be happy with anything under 20 degrees after my procedure, and I am pretty straight (def much better than before).  It is best to keep it pointed north toward your belly button but honestly I was not able to do that very well and it didnt seem to make much difference.  
55 y/o, Peyronies Disease onset 2018, diag 2/19.
Pentox failed, Ref to U-Michigan, doppler showed 45D right curve and 80D dorsal w hinge effect.
Incision/grafting/plication at U-M 9/20 failed.
Implant / graft repair with Dr Levine (Chicago) 9/21, successful so far

jj21

AcmeEric, I agree, it seems to vary case by case. Hoping the best for you!
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Stepone

Just read your post.
Thanks for sharing.
Sounds like you are on the right track.
Keep us posted if your progress.
Congratulations
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

AcmeEric

Post Op Day 4:

Days 2 and 3 were basically me just laying around. I did get up and move around a bit but found that laying down felt better than anything else I did. So far the pain has been extremely manageable. I would say I was most sore yesterday but I was also the most active I've been. My daughter had a cheer competition and I've never missed one so I wasn't going to start now. Honestly, the walking and standing didn't bother me as much as my choice of pants. I wore jeans and a belt. Couple that with the new position that my only partially flaccid penis has to live in for the time being I feel like it put a lot of pressure on him. Had I worn sweats like I have been I think I would've been in better shape.

From a pain perspective, I feel like I got in to fight and my opponent only landed shots below the belt. There is just dull pain in the entire region where a little bruising is also prevalent. Yesterday I took Tylenol twice and Meloxicam once and it seems to do the trick. I also quit taking the narcotic pain medicine at night after day two. It is definitely nice to have that as back up but there hasn't been a need. I slept just as well the couple of nights I have only taken Tylenol before bed.

It hasn't all been rainbows and sunshine. It took a while to figure out the best underwear that felt good but also kept Sammy pointing towards my belly button. I couldn't do the old school jock strap that had my butt hanging out and felt like a burlap sack on my junk. I think I said it in a previous post but I went back to some supportive briefs that I had for when I run. I tried some other boxer briefs that had a separate compartment for my buddy but it didn't account for him to want to be at attention. The separate compartment is for if he's just hanging out. So I wouldn't suggest getting those for immediate post op. They may be great in the future. So long story short, I've found that nice supportive briefs do the trick for me.

Finally, as I expressed in an early post. I have been a little concerned about the shape and what I am feeling. I've read time and time again that this is a marathon and that patients is the key...BUT...that's easier said than done when we've all been dealing with some form of deformity or ED. We just want it to be right immediately. With that being said, I have been assured by people on here that I trust that it'll all sort itself out. That's the beauty of this forum and the great people on here. I said it before but a man with an experience trumps a man with an argument. I am simply a man with an argument right now and I get to hear from men with experience. It helps tremendously for instant gratification guys like me to hear the encouraging stories of men that have been there and done that. So I said all of that for anyone reading this down the line. Draw from the guys that have been through is and don't lean on yourself.  
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

AcmeEric

I have a question. I just watched a video from Dr. Eid that says it is important to start inflating as early as possible (as early as day 3) because the possibility of scar tissue forming. He states to get the best results and to keep the tubes from binding it's important to cycle early twice a day. I am not due for my follow up until Dec 16 at which time I am supposed to learn how to inflate and deflate. Which obviously means I won't inflate for another 12 days. Dr. Eid said this is like a shoulder surgery. You don't want the shoulder in a sling for weeks, you want it moving shortly after the surgery. So should I inflate it now?
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

LWillisjr

You will find enough doctors who will say things that contradict everything. It could have a lot to do with the surgical procedure, the implant type used. etc. etc. You can't just take 1 comment and off the internet without putting in into proper context. I would follow the instructions of the surgeon who did the procedure.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Indenialguy

Quote from: LWillisjr on December 05, 2022, 08:27:28 AM
You will find enough doctors who will say things that contradict everything. It could have a lot to do with the surgical procedure, the implant type used. etc. etc. You can't just take 1 comment and off the internet without putting in into proper context. I would follow the instructions of the surgeon who did the procedure.

100%, great advice.  
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

AcmeEric

Post Op Day 8:

I continue to feel great with very little pain. Honestly, I've had Xiaflex treatments that have been worse than this. I went back to work for a little while on Monday. Again, I chose the wrong pants and regretted my decision about an hour in to the day. So Tuesday I showed up to work in sweats and a pullover (I own the place so I can do that). I'm trying not to over do it but it's always been my MO to do more than I should.

I started warm baths last night and I feel like I've stumbled upon some amazing life hack. I laid in the bath with a book and no one bothered me. It was AMAZING. I think I am going to carry this little gem well past the time that I am fully healed. I was told to stretch and massage my buddy while in the bath which didn't hurt at all.

Mentally I am getting better. I don't know how many other men out there have fought the same mental issues I have with this but I think I can sum everything up in saying, this condition made me personally feel less like a man. I'm an Army veteran, I own a successful company, I love my family, and all three of my kids actually think I'm cool. From what a "man" is supposed to be I check most of the boxes. Then this came along and the shame I felt was worse than anything I've ever experienced. But I'll say it again, It is great to hear from so many on here that have been through it and have made it to the promise land. You won't ever know how much you've help me and many others just by being brave and talking about it. Thank you to everyone on here! With out this board I'd be a basket case right now.
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

jj21

Quote from: AcmeEric on December 07, 2022, 02:19:57 PM
Post Op Day 8:

I continue to feel great with very little pain. Honestly, I've had Xiaflex treatments that have been worse than this. I went back to work for a little while on Monday. Again, I chose the wrong pants and regretted my decision about an hour in to the day. So Tuesday I showed up to work in sweats and a pullover (I own the place so I can do that). I'm trying not to over do it but it's always been my MO to do more than I should.

I started warm baths last night and I feel like I've stumbled upon some amazing life hack. I laid in the bath with a book and no one bothered me. It was AMAZING. I think I am going to carry this little gem well past the time that I am fully healed. I was told to stretch and massage my buddy while in the bath which didn't hurt at all.

Mentally I am getting better. I don't know how many other men out there have fought the same mental issues I have with this but I think I can sum everything up in saying, this condition made me personally feel less like a man. I'm an Army veteran, I own a successful company, I love my family, and all three of my kids actually think I'm cool. From what a "man" is supposed to be I check most of the boxes. Then this came along and the shame I felt was worse than anything I've ever experienced. But I'll say it again, It is great to hear from so many on here that have been through it and have made it to the promise land. You won't ever know how much you've help me and many others just by being brave and talking about it. Thank you to everyone on here! With out this board I'd be a basket case right now.

So happy for you man, and so glad you have found peace and happiness after this disease!

Time to go enjoy life!
34 Years Old...Peyronies for 4 years. 20 Degree left and upwards curvature, major dents and narrowing, ED.

Implant + Tunica Expansion Procedure, 7th Feb 2023, Titan 22cm +1cm RTE, Partial revision 27th June 23 (fix pump, remove 10ml reservoir).

Indenialguy

Quote from: AcmeEric on December 07, 2022, 02:19:57 PM
Post Op Day 8:

I continue to feel great with very little pain. Honestly, I've had Xiaflex treatments that have been worse than this. I went back to work for a little while on Monday. Again, I chose the wrong pants and regretted my decision about an hour in to the day. So Tuesday I showed up to work in sweats and a pullover (I own the place so I can do that). I'm trying not to over do it but it's always been my MO to do more than I should.

I started warm baths last night and I feel like I've stumbled upon some amazing life hack. I laid in the bath with a book and no one bothered me. It was AMAZING. I think I am going to carry this little gem well past the time that I am fully healed. I was told to stretch and massage my buddy while in the bath which didn't hurt at all.

Mentally I am getting better. I don't know how many other men out there have fought the same mental issues I have with this but I think I can sum everything up in saying, this condition made me personally feel less like a man. I'm an Army veteran, I own a successful company, I love my family, and all three of my kids actually think I'm cool. From what a "man" is supposed to be I check most of the boxes. Then this came along and the shame I felt was worse than anything I've ever experienced. But I'll say it again, It is great to hear from so many on here that have been through it and have made it to the promise land. You won't ever know how much you've help me and many others just by being brave and talking about it. Thank you to everyone on here! With out this board I'd be a basket case right now.

Posts like this are so important man. I think a lot of people will resonate with the feelings of emasculation you describe, I know in my lowest points I've certainly felt like that.

I look forward to seeing your journey progress and it offers people like myself a light at the end of the tunnel if things progress badly for me in the future.

Keep going bud, you're doing amazingly!  
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

Stepone

Agreed!
If we are fortunate enough to get our penis fixed and it strengthens our relationship with our spouse and our selves, then go for it.
My implant has had tremendous improvement on my manhood.
I understand I was fortunate to get the implant and have it work so well. Some sadly can't get an implant and have to find other ways to improve themselves, but I say if we can.... Go for it!
Thanks for sharing and stay strong my friends.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Indenialguy

Quote from: Stepone on December 12, 2022, 01:32:42 PM
Agreed!
If we are fortunate enough to get our penis fixed and it strengthens our relationship with our spouse and our selves, then go for it.
My implant has had tremendous improvement on my manhood.
I understand I was fortunate to get the implant and have it work so well. Some sadly can't get an implant and have to find other ways to improve themselves, but I say if we can.... Go for it!
Thanks for sharing and stay strong my friends.
StepOne

Just out of curiosity, what determines a bad candidate for an implant? Who would be the people who can't get one etc?
Still quite new to all this so learning for the long term.  
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

Stepone

I can only speak for myself.
It was several reasons.
1. I could not sustain an erection to reach climax. I had venous leak.
2. My penis was hourglassing
3. I was losing length and girth
5. Medications including injections were not working.
6. The curve was becoming more prominent.

I seem to remember the surgeon said, the venous leak was the primary reason and the other problems would disappear after surgery.
Hope this helps
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

AcmeEric

Post Op Day 16:

It's hard to believe it's only been 16 days since my implant. I am figuring out that I am pretty sure Dr Lentz gave me a long acting numbing agent of some type. I know a lot of you are thinking right now, "why doesn't he know what they did to him?" That would be a valid question. The reason I don't know everything that went on is because I literally ask zero questions. I don't know if I freeze up because I would actually like to know things, or if I swing to far to the "let the professionals do what they do and I'll just be along for the ride" camp. Maybe it was also a little bit of knowing Dr. Lentz from high school and even back then he was a high integrity guy. Anyway. Back to the conclusion of the possible numbing agent. Well, the first indicator is, my dick has been numb and is slowly starting to not be numb. Rocket science...I know! That could have been from the swelling but other places are still a little swollen and just ache. The second indicator is, things were beginning to ache a little more. That has all pretty much subsided with the exception of internally above my penis and below my abdomen. From what I can tell this is where the reservoir was placed. That area is definitely still pretty tender. All in all though I'd say things are progressing well.

The way my body works is as things start to heal and the pain subsides those same places begin to itch and that's where I'm at now. Fortunately, where my sutures are does not itch (which I imagine would be an issue) but literally everywhere else. My sack...my shaft...the head...hell, even my legs around it itch. This happened with both of my shoulders and my foot when they were surgically repaired so I am not concerned. It's just annoying as hell to try to scratch your balls through your underwear and pants, in public while trying to not look like a freaking weirdo. Small price to pay I imagine.

Tomorrow is my first post op appointment. I never thought I would say this buy I am actually looking forward to hopefully not having to walk around with a semi-erect penis. I imagine we'll start the inflation and deflation process tomorrow which I hear is SUPER fun and pain-free! Jokes...I imagine this is going to suck. I'm looking forward to it though. It's the little milestones that keep you going.  
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

Stepone

Thanks for sharing.
Good luck tomorrow.
I guess you will receive instructions on pumping, etc.
I remember I had my first post op 7 days later and then was given the green light to start pumping and also told after 30 days I could have intercourse.
I waited 31 days, lol
It was a little painful, but all worth the wait.
Stay well.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

AcmeEric

First Post Op Appointment:

I saw Dr. Lentz's PA yesterday for my first post-op. He took the stitches out and then we got in to how to inflate and deflate. I'd seen quite a few videos and have felt around so I was familiar with what needed to happen. I was surprised at the force it took initially to compress the bulb but as I did, oddly enough, my penis started to grow. He said that anywhere from 10-60 pumps usually does it which I thought to be a pretty wide range. I tapped out at 10 yesterday. I then pressed the release valve to deflate it and give my penis a squeeze and it went back down. Pretty crazy. I imagine I have a little scar tissue or something near the release valve because it's a little sore on the back side to press but nothing I can't handle. It was pretty easy. I was in and out in 20 minutes.

Now...on to the real reason why people post their journey and why people subsequently read those posts. When I got home last night I started my inflation regimen. I squeezed 13 pumps and my penis was harder than Chinese math. To my disappointment though, my penis still had some of the hour glass shape at the shaft that started my down this road to begin with. I will say it wasn't as pronounced but it was extremely noticeable. I didn't say anything at the Dr's office because I figured I wasn't inflated enough and when I actually got home and got it to the point of it being painful it would "iron itself out". That wasn't the case. I sat there with it inflated for 30 minutes while a played a game of Call Of Duty and then deflated it and when on about my business.

I understand (due in large part to this forum) that things will change over time. This morning I inflated it for another 30 minutes while I laid in bed and watched a Pearl Harbor special. Obviously it looked the same with a kind weird curve up now. I imagine things will settle down and change the more I inflate. So I am not going to take a long walk off a short pier at this point. I am going to rely on those that have gone before me and trust the process. I'd also say that I am about .5-.75" shorter than I was pre-peyronies but from what I read that should change as well.

Moving on to some questions? I watched a video from a doctor from some place (I know that's super helpful, I'll dig it up and post it on here) who said they have found that men that inflate 2xDaily for an hour each time saw the greatest gains in length and girth. Does anyone have experience with this?

Also, the PA said that I couldn't have full penetrative intercourse until at least after my next follow-up in January. He then followed that up with, "but you can play with it and..." but he trailed off and never finished that sentence. I have a pretty vivid imagination and I live my life in the grey areas. To me, that means anything BUT full penetrative intercourse. I'd like to hear some other interpretations of that very broad statement.

Thanks everyone!
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

IwillbeatPD

Hey Acme,

Following this post for sure. My main issue is also Hourglassing and a IPP or ETG and the two options I have if this doesn't get better naturally. If I do go the implant route, I had the same concern as you, if it would fix the hour glassing. I've read a little, but not tons of info on that. I believe I read something from dr Trost that said when they implant someone with hourglass, they "disrupt" enough of the interior to make that fill out and stretch. It sounds like the hourglass should mostly improve but maybe not completely. It would make sense to me that the more you inflate and stretch the tissue, the better the hourglass would get. Not sure about your post op instructions but the more you inflate, it should create more girth and less hourglass over time? Makes sense in my head anyway. Anyway, the important thing is you can actually have sex again soon, so that must be exciting!

For the indentation, I guess if it never goes away you could do a filler? Or ETG would fix it but doubt you'd want to do another surgery. At this point it's just cosmetic for you though which is good. Prob zero issues with stability.  
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

Stepone

AcmeEric,
Glad you are moving forward.
My first question is are you pumping to maximum?
Over time I worked my pumping up to 60 minutes each day to get maximum girth and length.
You will know when you're pumping to maximum, when you can't squeeze the pump anymore.
I have noticed sometimes I pump to maximize and a few minutes later I can pump a few more pumps.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Stepone

Sorry I forgot.
The hour glassing seems to disappear over time. I think the stretching makes that happen, but I am curious what others say.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

AcmeEric

So I've started pumping until I can't squeeze anymore. I am getting around 16-20 pumps. It absolutely feels like my dick is going to explode. It's kinda odd but I would say that the hourglass isn't really there. It is almost like it's an "S" now. The left part of my shaft is indented and the right side of my shaft protrudes out. It takes a little left turn then turns back to the right towards the top. On the left side where my shaft meets my abdomen, just under my shaft and inside of of my abdomen I can feel the tube that I imagine goes to the reservoir. It's extremely hard and I am curious if that is normal or if that is maybe causing the intention on the left side.

I go back for my second follow up so I imagine I'll just keep pumping and see how it all plays out. I am curious if anyone on here has had to have a second surgery shortly after the first to correct issues. I haven't really found anything on here.

I will say, it definitely gets hard. I imagine you can make it too hard for actual intercourse. It's not time for that for me but am also curious if you inflate it until you can't squeeze anymore for sex or if you back off a bit.

Otherwise I feel good. I'm back to running and working out so that helps. If I don't wear the right underwear I find I am a little sore in the evening. I'm also still a little sore in my pelvis just under my shaft. Other than that everything is moving right along.  
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

Stepone

Interesting description.
I wonder if you are exaggerating a little in saying your penis is in the shape of an S.
Perhaps a photo would help us determine how good/bad it is?
I can only speak for myself, but my penis was misshapen at first too.
I didn't have a s shape, but it was a little curvy.
It's good you feel like it's going to explode.
That means you are stretching it. No pain is no gain!
Keep on pumping!
My spouse has never told me my penis is too hard.
The tube thing is normal or at least for me.  Just leave it alone.
It's hard to imagine, so again perhaps a picture would help if you think it's way out of whack.
I think you are doing great if you are only a little sore.
I was constantly trying to find underwear that didn't pull the pump and hurt like hell.
Stay in touch and send some pics.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

LWillisjr

You are never supposed to pump as much as you can. You are definitely over pumping and will cause damage to yourself.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

Stepone

My surgeon told me to pump as much as I could.
I am not sure where you received your information on pumping?
At first my surgeon told me to pump as much as I could until I couldn't stand the pain any longer, but try to over time pump until you can't pump anymore.
The pumps are designed so that once you reach the max, it won't allow you to pump more.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Sonic

Perhaps @LWillisjr mistook the pumping as in VED.
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.

LWillisjr

Yep, apologies. Forgot you are post op with an implant.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

AcmeEric

I'll post up a picture later today. I'm probably overreacting but it honestly looks a lot like it used to before I had the implant. I know it'll get better over time. I am able to squeeze more pumps each day. I won't be using it for the foreseeable future but I'd like for it to be ready to go when the time comes.

Thanks for all the help and I'll post a picture once I get all of these people out of my house and actually have a minute to myself.
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

AcmeEric

Ok, so see how it takes a left at the bottom of my shaft then a right towards the tip. It isn't an hourglass shape anymore but definitely curved twice. Maybe it'll work itself out?
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

Indenialguy

I can see what you're saying yes, I think you've mentioned in a previous post about it looking like an "S" and although it's not that bad, I can see why you'd be mentioning it.

From what I understand things do improve over time but hopefully others with implant experience can shed more light.  
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

Sonic

I've got limited experience regarding this subject but could someone with implant experience please chime in and give an opinion on that pic that @AcmeEric posted. It doesn't look normal at all. Hopefully it will resolve with time.
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.

IwillbeatPD

I'd def talk to your doctor.

I understand your concern, but I also wouldn't worry at this point-especially if you haven't fully inflated yet. I would imagine over time the device would work out any kinks.
Fit 37 year old athlete. Hinging and hourglass began Sep 2022. Tried VED, Restorex, tadalafil with no improvement. Implanted by Dr Hakky 11/28/23 with Titan touch XXL 26 cm no RTE's. Pre op 8.25Lx 5ish G. Post implant: 8.25 L x 5.5 G

Pfract

Quote from: Stepone on December 23, 2022, 09:05:39 PM
Interesting description.
I wonder if you are exaggerating a little in saying your penis is in the shape of an S.
Perhaps a photo would help us determine how good/bad it is?
I can only speak for myself, but my penis was misshapen at first too.
I didn't have a s shape, but it was a little curvy.
It's good you feel like it's going to explode.
That means you are stretching it. No pain is no gain!
Keep on pumping!
My spouse has never told me my penis is too hard.
The tube thing is normal or at least for me.  Just leave it alone.
It's hard to imagine, so again perhaps a picture would help if you think it's way out of whack.
I think you are doing great if you are only a little sore.
I was constantly trying to find underwear that didn't pull the pump and hurt like hell.
Stay in touch and send some pics.
StepOne

Hey Stepone!

AcmeEric actually came through and posted a picture of his penis, on a pdf file as an attachment. It does look concerning to me. Normally the penis is straight or with a slight curvature, but this looks like the implant was poorly installed and or the cylinders somehow shifted position... But if it straightens itself out almost fully during pumping, then i'm not sure. https://www.peyroniesforum.net/index.php/topic,18618.msg158083.html#msg158083

@AcmeEric: I would definitely get a second opinion from the Dr, or at least show him this picture. He could also schedule a video consultation with Dr. Eid to have it checked out.




Stepone

AcmeEric,
So thanks for sharing.
I am confused at your penis pic.
Is it fully inflated?
If it is fully inflated, I agree it definitely has a unique shape and I would definitely contact Dr Lentz.
I always thought Titans were so strong, they normally correct any curves.
The Titan did smooth and straighten out my penis.
If you haven't pumped to maximum yet, it will eventually straighten it out. Keep on pumping.
Let us know.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

AcmeEric

It is fully inflated. As far as I can tell. I mean, I can't squeeze the build anymore. I see Dr. Lentz January 11 so do you think I should just ride it out until then or is this something I should reach out sooner for?
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

Pfract

Quote from: AcmeEric on December 28, 2022, 01:01:38 PM
It is fully inflated. As far as I can tell. I mean, I can't squeeze the build anymore. I see Dr. Lentz January 11 so do you think I should just ride it out until then or is this something I should reach out sooner for?

If you are fully inflated and this is the shape that you are currently in, then definitely something is going on. I am sorry to tell you, but i think this is not normal. I have seen so many videos and the cases i've heard of similar situations are botched procedures in someway.

Please look at Dr. Eid's website for informative articles on the matter and also, check his youtube channel for a lot of videos on inflating, post surgery rehab protocol and also tips and tricks.

https://www.youtube.com/@JFrancoisEidMD

Stepone

AcmeEric,
Since you said it is fully inflated, I would definitely call and see if you can get a sooner appointment. I am so sorry you are going through this, I can't imagine how I would feel.I don't think I would go as far to say it is a botched surgery, as I am not a surgeon, but something definitely is wrong.
Please let us know what happens.
Big hugs and prayers for you.
StepOne  
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

Stepone

AcmeEric,
I looked at your pic again on my computer so I could really see much better.
I know you said it is fully pumped, how are the cylinders aligned? Are they right next to each other horizontally?
It doesn't make sense that Titans would be misshapen so much.
Again, please let us know what the doctor says.
I am sure the surgeon can figure this out, so stay strong.
StepOne
Nesbit surgery 2015, 66 years young, Titan Implant 4/25/19, 22cm, Dr. Lentz, Duke University NC

FrankPD

Quote from: AcmeEric on December 07, 2022, 02:19:57 PM
Post Op Day 8:

I continue to feel great with very little pain. Honestly, I've had Xiaflex treatments that have been worse than this. I went back to work for a little while on Monday. Again, I chose the wrong pants and regretted my decision about an hour in to the day. So Tuesday I showed up to work in sweats and a pullover (I own the place so I can do that). I'm trying not to over do it but it's always been my MO to do more than I should.

I started warm baths last night and I feel like I've stumbled upon some amazing life hack. I laid in the bath with a book and no one bothered me. It was AMAZING. I think I am going to carry this little gem well past the time that I am fully healed. I was told to stretch and massage my buddy while in the bath which didn't hurt at all.

Mentally I am getting better. I don't know how many other men out there have fought the same mental issues I have with this but I think I can sum everything up in saying, this condition made me personally feel less like a man. I'm an Army veteran, I own a successful company, I love my family, and all three of my kids actually think I'm cool. From what a "man" is supposed to be I check most of the boxes. Then this came along and the shame I felt was worse than anything I've ever experienced. But I'll say it again, It is great to hear from so many on here that have been through it and have made it to the promise land. You won't ever know how much you've help me and many others just by being brave and talking about it. Thank you to everyone on here! With out this board I'd be a basket case right now.


We know or had similar experiences with the mentality of it all.

The last three sentences sums it up for me.  Thankful for this safe space and the people here.

:)
I have a girlfriend
Age 47, No injury
Diagnosis January 2022  
Six plaques
Hourglassing when flaccid and semi-erect
Only have my congenital curve
Massaging with vitamin E cream twice a day 
5mg Tadalafil, Healthy diet
Discomfort/aching sometimes

AcmeEric

Ok, well at least I know now I'm not crazy (well, not about this). I shot my doctor a note. I'll also check out the stuff on Dr. Eid. Hopefully it's something that can be fixed or will work itself out. I'm going to keep pumping and see what happens. I'll keep y'all posted.
47 years old
6 years Peyronies
1 round of Xiaflex, had a bad reaction
Titan 22cm implant 11-29-22

Gerald12345

Any updates AcmeEric? Hope things improved and you are busy using it...
Peyronie's onset in 11/2021. Age 39
Two plaques under the glans. Minimal pain, only congenital curvature.
Tadalafil 2.5 - 5 mg per day + TRT