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Author Topic: The Painful Journey.. Continued  (Read 1223 times)

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bustedchubb

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The Painful Journey.. Continued
« on: March 27, 2020, 07:52:16 PM »

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. 

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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

TonySa

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Re: The Painful Journey.. Continued
« Reply #1 on: March 27, 2020, 09:08:07 PM »

Sounds like a good plan.
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PxD 2 yrs 9/16.  Failed all treatment. 9/11/18: excision, grafting & implant Dr Karpman MtnView Ca, AMS CX 18cm + 3-1cm RTEs.
Pump failed.  2/11/20 Dr Karpman installed Titan 22cm +1cm RTE.

bustedchubb

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Re: The Painful Journey.. Continued
« Reply #2 on: August 21, 2020, 07:36:22 AM »

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.
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

Pfract

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Re: The Painful Journey.. Continued
« Reply #3 on: August 21, 2020, 05:53:21 PM »

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

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Re: The Painful Journey.. Continued
« Reply #4 on: August 22, 2020, 07:58:45 AM »

@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.
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

bustedchubb

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Re: The Painful Journey.. Continued
« Reply #5 on: March 03, 2021, 08:28:57 AM »

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).   
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

Melox

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Re: The Painful Journey.. Continued
« Reply #6 on: March 15, 2021, 09:32:15 AM »

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.
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bustedchubb

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Re: The Painful Journey.. Continued
« Reply #7 on: April 22, 2021, 01:37:20 PM »

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. 
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

GaussRifle

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Re: The Painful Journey.. Continued
« Reply #8 on: April 22, 2021, 03:00:20 PM »

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 ?
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26 year old
45-50 degree downward curve with an indentation on one side when erect.
Using RestoreX and Xiaflex injections
Taking coq10 with daily Cialis 5mg.

bustedchubb

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Re: The Painful Journey.. Continued
« Reply #9 on: April 23, 2021, 11:39:01 AM »

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.
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

postrocker

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Re: The Painful Journey.. Continued
« Reply #10 on: April 23, 2021, 12:08:09 PM »

buster, your pelvic floor stretching and exercises can be done at home?
if so, which ones are you doing? could you please share?
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34yo
Congenital curvature plus injury during sex - dec.2019
Curve to the left increase plus pain ~35degrees - nov.2020
Pentox (400mgx3) + Cialis (2.5mg/day) + supplements - dec.2020
Traction - jan.2021

bustedchubb

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Re: The Painful Journey.. Continued
« Reply #11 on: April 24, 2021, 09:04:07 AM »

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
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy

postrocker

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Re: The Painful Journey.. Continued
« Reply #12 on: April 24, 2021, 10:08:22 AM »

thanks!!
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34yo
Congenital curvature plus injury during sex - dec.2019
Curve to the left increase plus pain ~35degrees - nov.2020
Pentox (400mgx3) + Cialis (2.5mg/day) + supplements - dec.2020
Traction - jan.2021

bustedchubb

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Re: The Painful Journey.. Continued
« Reply #13 on: Yesterday at 04:46:43 PM »

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.
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43 Yrs old, Peyronies Disease Onset 11/2019, Stabilized 6/2020.

Dent/Hourglassing distal and dorsal side, ~50 deg bend up, lost length and girth top half (hourglassing).

Propolis, L-Citrulline/L-Arganine, RestoreX > 110days,  VED, Pelvic Floor Therapy
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