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Welcome to Dr. Landon Trost - Directly answering member questions in the "Medical Professionals" section below the Treatment boards. https://www.peyroniesforum.net/index.php/topic,16512.0.html

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Author Topic: Newly diagnosed - feeling sad but determined  (Read 132 times)

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thejoshua

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Newly diagnosed - feeling sad but determined
« on: August 07, 2022, 07:43:46 PM »

Hi new friends, I'm 44 years old, married for 22 of those years, have three kids, and am newly diagnosed as of last week. Grateful to have found this board and community, it's already been immensely helpful for me in finding answers to my questions and other people going through similar things as me. Makes me feel far less alone, for certain.

Not sure where to start, so I'll just give some background. I'm honestly not sure how I ended up with Peyronie's. Unlike some on the board, I don't have a distinct memory of a penile trauma that I can pinpoint. The only thing that comes to mind is a cystoscopy that I had about a year or so ago that definitely hurt for several days afterward, but there is no way to directly attribute my Peyronie's to that. I guess causation doesn't matter so much - I have this, no matter what caused it :-)

I definitely noticed some penile shrinkage, particularly in the flaccid state, over the last year or so, but I had attributed that originally to weight gain (which can also make the penis appear smaller). The odd thing to me wasn't so much that it was smaller, it was how significantly smaller - often "turtling," I suppose is the best way to describe it.

My original urologist consultation that led to the cystoscopy was for a weak urine stream, which we never really did get to the bottom of. At the time, the scope showed no obstructions or anything that should be causing the high pressure / low flow symptoms that we diagnosed. The only significant finding was a very mildly enlarged prostate - barely enough to register.

Recently, though, I started to notice a dull ache in my penis and testicles that I originally thought was prostate oriented. It wasn't bad, and I had no pain during erections, so I attributed it to the prostate stuff and just kept going with my life.

Then, about two or three weeks ago, the painful erections started. I played "Dr. Google" to try to understand what could be happening in my body, and arrived at priapism and Peyronie's. I ruled out both in my head (the erections weren't prolonged, so it wasn't priapism, and I hadn't noticed a bend in my penis, so it couldn't be Peyronie's.)

A few days later, I googled Peyronie's again and read about the plague, so I felt around my flaccid penis and easily identified what felt like an area of plaque on the top of the shaft, near the middle, beneath the glans. So I went to the urologist, they performed a scan, and they found two sections of plaque — one appx. 2mm, and one 7mm.

The urologist was a major letdown, though. The NP seemed uncomfortable explaining the diagnosis to me, and sent me on my way with a prescription for Transdermal Verapamil 15% Gel from Peyronies Disease Labs, 2.5 mg of generic Cialis daily,  and a brochure about some form of shockwave therapy they offer that was going to cost $5,000 for 12 sessions. I never saw the actual doctor, never received a copy of my lab scans, and declined to fill the Verapamil prescription based on decisions I made after researching here on the forum. That was it. She told me to come back in a year.

Here's the (maybe) good news in all of this: I know not to wait a year to get started on a better treatment plan. I may have begin developing a slight bit of curvature, but it is minor if prevalent so far. I think this is the time to start tackling whatever I can. I've researched and found a different urologist in town that seems more knowledgeable about things like pentoxifylline (I don't know how calcified my plaque is at this point), traction devices, etc. so I plan to make an appointment this week. Based on my reading here, I did decide to fill the Cialis prescription and am taking the 2.5 mg with positive results — I've only been on it for 3 days, and while the pain still persists, I am happy that the increased blood flow has already made my flaccid penis look a bit more normal in size.

I have also ordered (on Friday, to be delivered Monday), the following:
Ubiquinol
Acetyl L-Carnitine
L-arginine

Considering adding Vitamin E to the mix as well.

That's my intro. I'm still processing this diagnosis and have felt a bit sad, a bit overwhelmed, a bit depressed, a bit hopeful. . . and while I know I will talk to my therapist about this at some point, I'm not there yet. I think I still need a few weeks of processing, appointment scheduling, and acceptance to be ready to talk to anyone outside of this forum and my wife. I'm not embarrassed, just uncomfortable if that makes sense.

Thanks for being here, looking forward to getting to know many of you and contributing to the knowledge here. Already so grateful for what so many of you have shared.

-Joshua









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Married, 44 years old
Diagnosed in July 2022
In acute phase feeling pain
Upward curvature forming near glans
L-arginine, L-acetyl Carnitine, Ubiquinol, Vitamin E
Started VED and Restorex 8/22

nemo

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Re: Newly diagnosed - feeling sad but determined
« Reply #1 on: August 08, 2022, 01:06:53 AM »

Hey Joshua, welcome. Sorry you're in need of joining this forum, but glad you found it.

Yes, your initial urologist sounds like a waste of time: topical verapamil and shockwave - both are considered of no use around these parts. Frankly, I'm surprised Peyronies Disease Labs (topical verapamil) is even around anymore.

Sounds like you're on the right track. I know it's difficult to come to grips with, but also understand that there are millions of men living with peyronie's and it doesn't ruin there sex life one bit. The odds are in your favor that you'll be the same. So, don't give into worst case scenario thinking.

Best of luck to you,
nemo
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51 yrs. old, multiple auto-immune conditions. First episode of Peyronies Disease in 2002. Recurred a couple times since. Over the years I have tried Topical Verapamil, Iontophoresis, all the supps and Cialis + Pentoxifylline. Still functional, always worried.

Mikel7

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Re: Newly diagnosed - feeling sad but determined
« Reply #2 on: August 08, 2022, 05:17:57 AM »

Welcome Thejoshua to the forum. The first thing you should do is to fill out your signature line -->https://www.peyroniesforum.net/index.php/topic,10819.0.html . This is a quick snapshot that other members can read at a glance about your current status. 
 It also looks like you have read the survival guide -->https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057 . This is an excellent source of info regarding peyronies and it's different treatments.

I agree with what nemo said. You should definitely look for another Dr and forget the shockwave and verapamil.  If you can fine a peyronies Dr then that is the best way to go for a correct diagnosis.

Getting a game plan and following it is your first best choice. VED and traction therapy is a must and it can prevent further damage and help you regain back that which was lost.  I also recommend heat therapy a lot because of how it really helped me in regards to pain and healing. The supplements can be helpful along with a healthy lifestyle too. Cialis type drugs bring fresh oxygenated blood into your penis and also helps with inflammation and preventing shrinking.  Remember though that you must develop the mindset that this is a marathon and not a sprint.

Congrats on 22 years and 3 kids! Having your wife involved is a plus plus too. It helps alleviate a lot of the mental burden that you are not in this alone! You also are not embarrassed about this as this is just a part of our bodies that needs physical healing and attention. You definitely have a good mental foundation and will make it through this. Do not let your mind take you down the negativity road as some have gone. Yes we all will have a bad day here or there but don't stay there. Work your plan and remember that you are not alone in this as there are a lot of us guys here who have trodden down your same path.  :)  Mikel7
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Lump April 2020, age 61 , Dr Levine 6-26-20,
Dorsal Curve 11-1-20 , Peyronies
Vit E400mg, COQ10, ALCAR, Heat Therapy, Penimaster, Pentox, Cialis, Restorex
had SNHL 7-31-20 - Stopped all Meds because ototoxicity  Heat/traction/VED are working.
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