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[bustedchubb]

My Story Started Here. https://www.peyroniesforum.net/index.php/topic,13179.0.html

It has been a little while and wanted to give an update on the progression of Peyronies Disease and other complications that have developed since I introduced. Hopefully, this information will help others, as well as myself.   Starting in late February, my pain had increased significantly and was spread to my rectal, perinanal, and throughout the penis.  It hurt to sit, urination was rather uncomfortable and had constant issues with urination.  As part of my Peyronies Disease progression, I have trouble with left-angulated urination and reduced stream / increased voiding pressure.   This in turn triggered a nice flare up of Prostatitis, which I never had before, and I have been battling with that over the last month.  I finally am getting it under better control with rest, avoiding all triggers, and pelvic floor stretches. 

I seen my urologist before the COVID-19 breakout, and he wants to do a cytoscopy to see if I have any scarring in the urethra to rule that out.  My peyronie's disease has progressed not so much in my curve to the left of 10 degrees or so, but the wasting and loss of girth and length.  I'm losing erectile capabilities as well.  All very disturbing, but I have to get the urethral issues sorted out first so I can be in less pain.  The pain I'm dealing with may be mostly from this inflammation and pain from prostatitis or just the fact that I haven't pissed right since December 2019.   

On the positive note, I did finally order my restoreX before I lose another nanometer of my already busted and shrinking chubb.  I will take it slow and steady as not to further damage things, but enough to get the job done. 

[TonySa]

Sounds like a good plan.

[bustedchubb]

May 14th, 2020: My urologist postponed the scheduled Cystoscopy due to me having made some progress with pelvic floor stretching and exercises.  I wasn't all busted up from that at the time due to how terrified of the procedure I was and the fact that I really did not care for his approach or attitude towards my case in general.  He could care less about the advancement of my Peyronies Disease and was content to do nothing.  A week later I switched to the doctor that I should have been seeing since day 1.

On June 2, 2020, I had my first visit with my new Urologist, which is a Peyronie's specialist and a reconstructive urologist.  (Paul Rusilko, DO, UPMC Mercy)  He took a long time to listen to all the symptoms and was in no hurry to run out and give me lip service.  After examining me he determined that I had a large 2cm x 1.5 cm plaque mid to upper dorsal shaft and that it definitely needed evaluated with a injection/scan so that he could formulate the best course of action.  He is not a huge fan of Xiaflex, but will use it if he feels it makes sense for the case, he mentioned that he uses varapimil at times, too.  For the prostatitis and urinary symptoms : After a prostate exam, which was PAINLESS!, he didn't feel anything off there but noted that my pelvic floor was spastic and dysfunctional.  He prescribed me to pelvic floor physio therapy and suggested that I get the cystoscopy at some point if there wasn't a resolution of symptoms.  At this time I had a 15 degree left bend and a 50 degree dorsal up bend.

June 4th to Present: Daily VED sessions using forum main VED protocol.  1 - 15 minute session daily. 20/30/50% erection with 3 tube Somaerect device.  Manual traction daily.  @Monty, I have a very similar deformity to what you had and am hoping to replicate your success story.

June 29th to Present: Weekly Pelvic floor physio therapy.  Sessions weren't that uncomfortable, I had some folks PM me about most therapists being female and that being a possible problem.  I can say in my case, it was not and the process is as modest as it possibly can be.  You go in, undress from waist down (just like the ol cystoscopy) and put a sheet over your junk.  They come in you bend your knees laying in your back and she goes up the rear that way.  Just make sure you are breathing good in and out long breaths.  Old man on the forums gave me that tip and it was great advise for this as well as cystoscopy.  My hard flaccid, prostatitis symptoms are mostly resolved minus the odd minor flare up here and there.  The therapy is a Godsend.  I have always suffered from difficult crapping my whole life, and now 43 years in, I am finally near normal in that department.  Urination issues still have persisted, but have lessened in intensity.

August 20th: Cystoscopy performed by Dr. Rusilko.   No strictures found, and bladder is in perfect shape.  As suspected, pelvic floor / urinary sphincter is to blame for my remaining symptoms.  There is a minor external abnormality that traces down my corpus spongiosum that could explain the voiding issues otherwise.  So really its the chicken and egg scenario.  NeoV pointed this out to me and is on the money as to it being the cause. It would also explain my improvement happening as my lateral curve is correcting. 

August 21: Recovering VERY well from cystoscopy.  No razorblade pissing and no issues beyond what I went in with for the most part.  Left curvature is now mostly gone, < 5 degrees.  Upward dorsal stands at 60-70 degrees.

Starting 9/1 - Slowwwwwwwly adding RestoreX back in while maintaining all other actions.

[Pfract]

hey chubb.... if only more doctors were like yours to listen to their patients and offer them proper treatment. Good luck on your journey.

[bustedchubb]

@pfract: You are totally right, way more need to be like my doctor.  It is the reason he is as busy as he is and people are coming as far as they are to see him.

[bustedchubb]

October 11, 2020 to present - Completed 145 days of RestorX traction at 90 (3 x 30 minute) minutes per day.   Dorsal curvature has been reduced from 80 degrees to 50-60 degrees.  Penile health has improved greatly.  Pain has 95% or more resolved.  No real improvement on hourglassing / narrowing across upper shaft.  Post urination burning and crinkle feeling has mostly resolved.  Pelvic floor dysfunction is nearly cured.  I will be maintaining pelvic floor therapy on a once per month basis until totally resolved.

Feb 9, 2021 - Had tele-appointment with Dr. Brian Christine to discuss Plication with Extra Tunical grafting surgery.  He is a very personable doctor who actually listens and gets to know your situation.  He was alot better than my current uro.  Scheduled appointment to go to his office in early April to do injection and doppler study.

Feb 23, 2021 - Had appointment with Dr. Paul J Rusilko, gave updates and got more information on the types of surgery he does.  He does not do Plication with ETG.  However, does do all the rest of the standard procedures.  Plications, Incision/Excision and grafting, and penile prosthesis (implant).   

[Melox]

My Story Started Here. https://www.peyroniesforum.net/index.php/topic,13179.0.html

It has been a little while and wanted to give an update on the progression of Peyronies Disease and other complications that have developed since I introduced. Hopefully, this information will help others, as well as myself.   Starting in late February, my pain had increased significantly and was spread to my rectal, perinanal, and throughout the penis.  It hurt to sit, urination was rather uncomfortable and had constant issues with urination.  As part of my Peyronies Disease progression, I have trouble with left-angulated urination and reduced stream / increased voiding pressure.   This in turn triggered a nice flare up of Prostatitis, which I never had before, and I have been battling with that over the last month.  I finally am getting it under better control with rest, avoiding all triggers, and pelvic floor stretches. 

I seen my urologist before the COVID-19 breakout, and he wants to do a cytoscopy to see if I have any scarring in the urethra to rule that out.  My peyronie's disease has progressed not so much in my curve to the left of 10 degrees or so, but the wasting and loss of girth and length.  I'm losing erectile capabilities as well.  All very disturbing, but I have to get the urethral issues sorted out first so I can be in less pain.  The pain I'm dealing with may be mostly from this inflammation and pain from prostatitis or just the fact that I haven't pissed right since December 2019.   

On the positive note, I did finally order my restoreX before I lose another nanometer of my already busted and shrinking chubb.  I will take it slow and steady as not to further damage things, but enough to get the job done.

I have the same issues!!!Pain when i urinate, discomfort in the perineum area...and peyronie.

[bustedchubb]

April 9, 2021 - Travelled from Pittsburgh, PA to Birmingham, AL for my in office visit with Dr. Brian Christine for my injection/doppler test and evaluation.  He was every bits a great in person as he was over the phone and his videos.  Deterimined that max curvature was about 45-50 degrees dorsal with minor to moderate hourglassing at upper mid shaft.  He didn't think my case was too severe and nothing was calcified.  He commended me on the traction dedication and it definitely helped to remodel some of my plaque.  Plication with possible tunical grafting was the solution that we agreed on and I'm scheduled for surgery at the 3rd week of June. 

[GaussRifle]

Hi bustedchubb, I have a similar degree of curvature in the opposite direction. Can you tell me why dr Brian Christine and you decided on plication without trying Xiaflex first ?

[bustedchubb]

Dr. Christine is one of the top high volume Peyronies Disease surgeons in the country.  He was trained in part by Dr. Tom Lue and trains other surgeons across the country.  Also, another forum member, benjamin62, had posted his surgery video and was a great option for situations like ours.   Xiaflex was not a good option for me due to where the plaque was and would most likely have ended up badly with a hematoma and or fracture like Tdix had happen to him.  I would strongly encourage folks to look at all the info on xiaflex. It is not anywhere as good as they make it sound in the literature and initial studies. Does it work, yes it can, but it has to be done right and by the right person.

[postrocker]

buster, your pelvic floor stretching and exercises can be done at home?
if so, which ones are you doing? could you please share?

[bustedchubb]

Yes, I do them daily.  Here is a link to the majority of what I do, and I suggest watching Uptown Mike's content on youtube.  Here is a link to his stretches, as well.

Stretches:

https://www.pelvicpain.org.au/easy-stretches-to-relax-the-pelvis-men/?v=ef10366317f4

Video:

https://www.youtube.com/watch?v=NpQtX5qM7nM
https://www.youtube.com/watch?v=J6tueuGlo1Q

[postrocker]

thanks!!

[bustedchubb]

June 17, 2021 - Underwent Penile Plication with Dr. Brian Christine from the Urology Centers of Alabama.  Arrived at 5AM for 7 AM surgery.  Spoke with Dr. Christine the night before and the morning of the surgery.  He went over everything with my wife and I that we could expect with the surgery and the recovery.  I woke up around 9:45 AM in the recovery room and in some pain.  Mostly burning around the cicrcumcisional incision that was done for degloving.  Extra tunical grafting was not needed once plication was done. 

Got back home and began a laying down regiment with a 30 min ice on / 30 min ice off during the waking hours.  Was given Hydrocodone + Tylenol combo along with Bactrim (antibiotic).  Taking the antibiotic twice a day, but just switched over to Tylenol for day 2.

Got some swelling that makes peeing a little tricky, trust me when you read others surgical summaries, when they have to sit down and pee.  There's a good chance you will too when your meatus gets all puffed out.

I take off the dressing Saturday June 19th and am definitely scared of seeing what i got under that bandage... whew.   I will post further updates as healing progresses.

[bustedchubb]

June 19th, Day 3 post surgery : Removed dressing in AM and showered.  Was not as bad of a horror show as I was expecting, but mostly swelling throughout the penis and mild bruising here and there.  Also, uretheral meatus swelling subsided some and allowed more controllable urination, but still deflecting right and left at beginning and end.  Pain totally manageable with a 500mg Tylenol here and there.

June 20th, Day 4 post surgery : Swelling and bruising increased slightly but still no real pain or issues.  Woke up in the morning with some minor bleeding from dorsal stitch from a nocturnal erection.  I had no pain nor was woken by it.  Bleeding stopped and scabbed up soon as it went back down.

June 21st, Day 5 post surgery : You guessed it, swelling still unchanged but no worse.  No spotty bleeding at all last night and wounds are all looking better and better.  Going to be a long haul still but I'm way better off than I thought I'd be.  Urination deflection still in play but meatus swelling is definitely going down.

[Kobegianna]

What did he don’t address the hourglassing if he didn’t place any extra tunica grafts?

[bustedchubb]

The indentation was pulled out enough due to the massive amount of traction and VED that I been doing over the last year.  It actually wasn't that bad anymore and once straightened was barely even noticeable so no need to patch.

[bustedchubb]

June 22nd to July 1, Day 6-15 post surgery :  Meatus and Glans still swollen but SLOWLY resolving.   Only have one little spot of leakage from a ventral suture.   Still peeing in a cup but by day 14, I'm almost in full control of stream.  Pain is no more than some wierd pulling and stretching sensations from the incision during the day.  Sleeping has been the biggest challenge yet.  I get about 2-3 hours of sleep before getting woken by a painful nocturnal erection.  The pain is from mostly where the plication stitches are, but do get some burning and stinging pain when you auto-kegel from the incision points.  I'll get up, piss, it goes back down, I may get another hour before repeating cycle over again until I wake up.  Penis is definitely sore and painful ventrally after I wake up.  I have been sleeping without underwear per another forum member's suggestion in his detailed write up.   By day 13, I have stopped all pain medication over the counter and otherwise.

July 2nd to July 3rd : Day 15-16 - Sleeping is improving due to erectile pain lessening.  I can get about 4 hours consecutively now, and then 1-2 per following erectile cycle.  Still peeing in cup, but meatus is almost back to normal, glans tip is still swollen and sensitive but definitely close to being back to normal. 

[bustedchubb]

July 4th to July 9th: Day 17 to 22 - Swelling is very slowly resolving.  There has been very little to no flaccid pain, just some pinchy stretch feeling around the incision.  Sleeping has improved to me being able to get 1 hour, then 3-4 hours, then another 1-2, vs getting up every hour before.   Erectile pain has gotten better, but still has a bit to go before resolution.  I am set to have my follow up appointment with Dr. Christine on Tuesday, 7/13 and will update next then.

[bustedchubb]

July 13, 2021 - Follow up appointment with Dr. Christine in Birmingham, AL.  I was examined by Dr. Christine and his new fellow that is training for Peyronies Disease specialty and will be practicing in the Boston area I believe after she is done.  Both concurred that I was healing wonderfully, and removed some dissolvable stitches that were ready to fall out but left some in that weren't quite ready to yet.  Wasn't hardly any pain to removing them, almost felt like pulling a small splinter out of your finger, but your junk....  He did give me the all clear to resume use of mr. wiener, but I am holding the line yet as there's healing definitely left to be done.

July 14-July 17 2021 - Just started day 31 of recovery.  Swelling continues to slowwllly go down around the dorsal stitch site, which is the last place to go down per Dr. Christine and other patients I talked to.  I no longer have to pee in a cup as meatal swelling is about gone.  I am almost able to sleep through the night now as erectile pain has dramatically decreased over the last 7-10 days.  Still holding out for another week or so before attempting usage.

[bustedchubb]

July 18 - August 2nd : Days 32 to 46 days of recovery.  Most of the incision has been fused together at this point.  Small amount of swelling remains by the dorsal incision.  One small spot on the right side incision still not quite sealed, but almost there.   Erectile pain totally gone, however nocturnal erections that last a while get a bit pinchy around the incision lines underneath still.   Still not using it yet.  Going to wait until the incision line is fully fused.

[bustedchubb]

August 3rd to August 25th: Days 47 to 69 of recovery.   Almost to 10 weeks post surgery and I am about fully recovered.  All suture lines have fully sealed and there is no discernable pinching or pain from them upon palpation.  I still get some burning/stinging pain if I have a long lasting nocturnal erection where the plicating sutures are, but it doesn't last long and isn't that bad. No other erectile pain at this point.  The incision line is visible and is slightly indented all the way around when erect.  Otherwise you cannot tell where the line is when flaccid.  Test fired the unit several times so far and ejaculation has been closer to what it was before Peyronies Disease (probably because it isn't traversing a 45 degree bent hose), while urination issues remains about the same as they were pre-surgery, but definitely is fine enough.   Will be using it for action CAREFULLY within a week.

[Lostandsad]

Thank you for the consistent updates. Hope you recover 100%.

Did you ask about the urinary issues? Absolutely nothing that could be done about that? 

[bustedchubb]

I have asked about it, but not one urologist takes it seriously due to the fact that I had a cystoscopy and have no stricture or at least one severe enough to detect.  They kind of have a line in the sand about urination.  If you can empty your bladder and don't get UTIs, you're good enough for them.  I have talked to 3 uros in total and that's been the consensus so far.  I think if I would go to see Dr. Gelman out in California, they'd get to the bottom of where the crimp is.  But I honestly don't think its bad enough to go through all that and another invasive surgery. 

[Lostandsad]

Aw man, that’s depressing. You think showing them a video of your urination stream would help? I’m about to do that for my next urologist visit. My stream starts twisting in a weird way mid urination as well. I believe the scar tissue/plaques are constricting the urethra and messing up our urine streams.

[bustedchubb]

That's one heck of a good idea. I wish I thought of that.  If you do and it works out, please post about it.

[Lostandsad]

Unfortunately last time I went and I showed them the video, they don’t know what’s the cause, especially with the scope showing no stricture. He just prescribed me overactive bladder meds to try, and those didn’t work, made it worse actually.

I think I need a voiding cystourethrogram or something to see what’s really going on but not many places even do this type of test.

[68andbent]

Bustedchub, are you back in business yet.  My first placation did take a while to heal.  My only problem with my first was the swelling as you state and I did have a blood pocket leak that made the side of the shaft blow up like a baloon.  I finally send a picture to the Dr. and I had to go and have the blood drained. I must have had a leak from one of the placation stitches.  I now need a second placation and I am totally scared.  I am going to see Dr. Christine.
I hope he can help.

[bustedchubb]

Sorry to hear that, man.  You are definitely in good hands with Dr. Christine.  Tell him you heard about him from the forums and the guy from Pittsburgh and Boston recommened him.  He'll know who we are for sure.

Yeah, I am back in business, but because of my small indentation, I am a bit gun shy that I'm going to injure myself again, probably just mental as it is stable for use.  I do have some pinching / burning pain at max erection occasionally but other than that its definitely way better now than before surgery.   I will be posting a final update to my thread here shortly.

[GaussRifle]

Busted chub, good to see you are doing better after surgery. You do not mention your pre op and post op length after surgey ? Hlwhat was the length loss as a result of plication ?Are you happy with length, how much circumference did you gain with ETG ?

[bustedchubb]

Pre-op, I was just under 5 inches, after 4.75 inches.   I did not have ETG, Dr. Christine did not need to do it after they tied off the straightening stitches.  The indentation wasn't severe enough to warrant it.  I am satisfied with the length, but would probably have opted to have the graft just for my own peace of mind and for appearance, but after using it several times was not an issue.  I think anyone that undergoes surgery has to realize that you wont get back your pre-peyronie's penis.  I was very well warned of that and that it wouldn't be perfectly straight.   Given I had a severe upbend and some left bend, he did a great job.   

I rarely have any further discomfort from erections, but you do sometimes get this small sensation that the stitches are holding back the curve at max erection / pre-ejaculation. 

So in the end, was it worth it?  Yes!   

Would you have liked to been more like you were pre-peyronie's?  Yes, but it is totally manageable.

Was the recovery easy and eventless?  Yes and Yes.  Plication (non-Nesbitt) is very solid and safe solution to some cases of Peyronies Disease. 

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