Not the project I wanted at this stage in life

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Dent-n-curve

Well, hello everyone.

I've tried to make a signature that encapsulates things, but .. here I am.  I'm in my early-mid 50s, otherwise fairly healthy and eat a high fiber/primarily veg diet.  

And so, there I was, minding my own business, when out of nowhere, a familiar story begins

  • Probably in the summer of 2022, erections start off feeling sore.

  • After keeping track of that for a bit, I find that seemingly out of nowhere, my d**k looks dented, on the side, and near the base

  • Go to my urologist, who I like, but, I think it's fair to say he likes to talk more than listen, which could be of use, but he's not always on topic.  He feels me up (down?) and says "oh yeah–Peyronie's" pointing at the places where he feels plaque (which at this point was largely one spot which would otherwise be appearing as dent near the base if I were erect at the time).  He tells me to take a vitamin E and 5mg Tadalafil daily, stretch it a little (="modeling"?) and come back in 6 weeks.

  • Six weeks later, more curving toward the dent, plus denting on the other side and some upward curving, largely from this "band" across the base, but also along the top/dorsal plane in general.  He starts the process for Xiaflex/CVS specialty pharmacy, and also mentions Dr. Carrion.  I make an appointment with Carrion.

  • Carrion seems a good guy. He pulls pretty hard on my flaccid friend in the exam (ow!), feels the plaques and agrees it's Peyronie's.  Puts me on Pentox (400 2xDay) and L-Arginine, says to stop the vit. E, can keep going on CoQ10 (which I take anyway), refers me to a company for getting a VED and schedules me some months out for a followup and doppler

That followup and doppler appt. with Dr. Carrion is coming up toward the end of this month.

My d**k still sorta works.  It can get hard, give and feel pleasure, but I have only had a few non-masturbatory sexual experiences with it in this condition, and found it's not amenable to all angles of sex, and my confidence in both its studliness and sturdiness is definitely undermined.  

Soreness is improved but it still feels just a little sore at erection onset, and I think things have stayed the same or possibly gotten even a wee bit worse in terms of dent(s) and curve during the month or so I've been on the Pentox/Arginine/Tadalafil/VED. Difficult to know for sure, as it's possible it's the lens of my attention to it now.

The VED is not much fun. (this is probably not news to most of you)

(side note: is the uncensored Richard nickname acceptable language in this forum? It takes some of the clinical intimidation out of talking about this to be able to refer to it that way instead of "penis")

It's honestly difficult to reconcile this whole experience, and I realize I'm still at the beginning of the process, less than a year into things.  This forum has been a source of both inspiration and horror -- I really don't know what to expect from my processes ahead, but I surely anticipate there to be pain, and a fair chance of some disappointment.

I'll try to contribute anything I can along the way.  If such a thing is possible or within the spirit of the forum,  I'd even be open to the possibility of meeting up with guys in the area who have been through this (or are enduring) to be able to share frank conversations about the process with others who are really the only ones who could understand. (I just realized "frank conversations" has some potential as a truly terrible pun in this setting, in a "Something About Mary" zipper-scene way).  


 
Early 50s, Peyronie began mid 2022 as pain, dent near base, curve toward dent, then became waisting/hinging into upward curve. Currently on Pentox/Cialis/Arginine, + Restorex.  Seeing Dr. Carrion, Xiaflex round 1 completed on 7/12/23

gsc55

Welcome to the 'left-hook' crowd...well, that is where mine points now!

All kidding aside, you are discovering, as I have, that this is a very complex medical condition with no 'silver bullets'. There are no quick fixes and this is not a sprint, but a marathon/journey.

I was diagnosed almost 2 years ago with both ED & PyD, I'm just now starting a treatment journey that, as of this date, I'm not sure what direction it will go. My first visit to a P.A. in a Urology group near where I live wanted to start Xiaflex treatments (injections) almost right away. He was not going to perform an ultrasound, or a blood test, just jab away by "feel". No thank you; I didn't go back. I tried finding another Urologist in my general area that is very knowledgeable about PyD and I hit a brick wall. So, I did my best to put it out of my mind, I discussed all of this with my wife of 30 years, and I was pretty much resigned to the fact that like a light switch, my sex life was over with.

Well, I found out about a clinic in Atlanta that specializes in all problems with male sexuality, including Peyronie's. It still took me 6 months to make an appointment. I think the thought of injections and/or surgery on my johnson was not at all palatable. Anyway, I had my first appointment last week and was given a script to give blood at a Quest lab. Testosterone and other tests were on that request. On 3/21, I will be having an ultrasound (he injects the penis to get an erection) to see how extensive, and/or calcified my plaque is.

Anyway, I do not yet know what my overall treatment plan is.

I did not mean to go on so much about me other than to share you are not alone. The claim is that 15% of all adult males have this condition.

Keep us all posted on how things go. What worked; what didn't. I'll do the same.  
Age: 67
ED & Peyronies Disease. Diagnosed by urologist of Peyronie's disease, Sep 2021. Problems started Nov 2020. Significant left curve @ 90°.
Feb 2023 - 1st appointment at Morganstern Urology clinic in Atlanta, GA

Dent-n-curve

I appreciate the reply!  And it seems we're somewhat synchronous with regard to upcoming ultrasound appointments.

Keeping you all "posted" on how things go is something I plan to do, and also something I can't help noticing as yet another unfortunate entendre.  
Early 50s, Peyronie began mid 2022 as pain, dent near base, curve toward dent, then became waisting/hinging into upward curve. Currently on Pentox/Cialis/Arginine, + Restorex.  Seeing Dr. Carrion, Xiaflex round 1 completed on 7/12/23

thegreycat

Quote from: Dent-n-curve on March 03, 2023, 10:03:52 AMThe VED is not much fun. (this is probably not news to most of you)
Truer words were never spoken! I have actual nightmare dreams where my dick explodes inside the VED. The whole thing is terrifying and stretching for 10s at a time also feels fairly pointless. Still, I keep on.

Welcome to the forum, you're among friends here. Keep us updated.
35. No injury. Lump Feb 22.
Pain, dent, left & upward bend ~50deg. Bad EQ.
Cialis Dac 22 - ear issues.
Diagnosed Feb 23.
VED Oct 22. PMP Feb 23.
Lump reduced May 23, dent remains, angle a little better. EQ improved.

Supportive partner, depression.

Dent-n-curve

Quote from: thegreycat on March 03, 2023, 11:18:04 AMTruer words were never spoken! I have actual nightmare dreams where my dick explodes inside the VED. The whole thing is terrifying and stretching for 10s at a time also feels fairly pointless. Still, I keep on.
OMG. Yep.

And 10 seconds at the hopefully right amount of vac in the VED?  My instructions are to hold for 1 min at a time, release and repeat 10 times for 10-15min worth.  

Regardless, it's both scary and unpleasant, but I'll forgive that if it helps.

Quote from: thegreycat on March 03, 2023, 11:18:04 AMWelcome to the forum, you're among friends here. Keep us updated.
Thank you! I appreciate it.

 
Early 50s, Peyronie began mid 2022 as pain, dent near base, curve toward dent, then became waisting/hinging into upward curve. Currently on Pentox/Cialis/Arginine, + Restorex.  Seeing Dr. Carrion, Xiaflex round 1 completed on 7/12/23

thegreycat

Quote from: Dent-n-curve on March 03, 2023, 01:08:40 PMMy instructions are to hold for 1 min at a time, release and repeat 10 times for 10-15min worth.
Is that from a urologist? I see a lot of this and it flies in the face of the forum protocols. I'm assuming 1 min at comfortable/full erection, deflate for X seconds and repeat?

I've always felt the forum protocol doesn't allow enough time for the tissues to stretch, it's 10 seconds and deflate, 10 times.
35. No injury. Lump Feb 22.
Pain, dent, left & upward bend ~50deg. Bad EQ.
Cialis Dac 22 - ear issues.
Diagnosed Feb 23.
VED Oct 22. PMP Feb 23.
Lump reduced May 23, dent remains, angle a little better. EQ improved.

Supportive partner, depression.

Mikel7

Welcome Dent-n-curve to the forum! Sorry about your situation and let me offer you some hope that for a lot of us here things do improve. I cannot tell you that things will go back to your original state, but this forum is the best and most informative one on the planet. There are a great bunch of guys here and a few wonderful women who support their men in this journey.

I say to study and read the forum because knowledge is power and most urologists do not possess this one important fact. They just want your $$$ and are not humble enough to tell you that they are not knowledgeable regarding peyronies. You need to to get a mindset that this is a marathon and not a sprint. Remember also that we have on board here DR Trost and Dr Eid here to personally address your questions. In my opinion they are two of the most humble and caring Dr's in regards to peyronies and they are experts in their field.

    Mikel7 :)
Lump 4/2020, age 62 , Dr Levine 6-26-20, Dors Curve 11/2020, Peyronies
Vit E400mg, COQ10, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
SNHL 7/2020 - Stopped all Meds because ototoxicity  Heat/traction/VED are working. CPPS Diagnosis - Stable :)

Dent-n-curve

Early 50s, Peyronie began mid 2022 as pain, dent near base, curve toward dent, then became waisting/hinging into upward curve. Currently on Pentox/Cialis/Arginine, + Restorex.  Seeing Dr. Carrion, Xiaflex round 1 completed on 7/12/23

Douglas62

Dent-n-curve, thank you so much for writing your post as it seems to have channeled my exact thought stream and viewpoint on the topic.  SOOOOO frustrated to be in this situation but don't know what to do.  Keep posting as it seems we have almost exact situation and I am looking for guidance in the dark
54 male, Peyronies onset Nov 2021, Loss of 2 in+ , painful buildup at base

Dent-n-curve



Thanks, Douglas!  I'll start a new thread in the appropriate spot after anything I learn in my upcoming Doppler appointment

 
Early 50s, Peyronie began mid 2022 as pain, dent near base, curve toward dent, then became waisting/hinging into upward curve. Currently on Pentox/Cialis/Arginine, + Restorex.  Seeing Dr. Carrion, Xiaflex round 1 completed on 7/12/23