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Author Topic: Diagnosed yesterday  (Read 167 times)

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frad0me

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Diagnosed yesterday
« on: February 23, 2021, 01:50:08 PM »

Hi everyone,

About 2-3 months ago I started to notice I was have prolonged erections at night.  Obviously night erections are normal, but something felt off about them.  At first I would just fall back asleep, but I started to realize it was happening almost every time I woke up at night.  At first I wasn't overly concerned about it because I wasn't really experiencing any other symptoms.  After a week or so I started to feel some tenderness in the tip of my penis.  I thought I was suffering from a sort of priapism (the best I could determine based on my google searches).  I eventually noticed a lump near the head of my penis on the left side.  I immediately scheduled an appt with a urologist here in NYC - Dr. Kashanian, however, another month or so went by before I saw him.  In that time I also started to notice a bit of shrinkage and/or stiffening throughout the shaft of my penis, perhaps even the hourglass shape that seems to be another common symptom.  I knew something was wrong, but I was just driving myself crazy googling things.

I finally saw Dr. Kashanian yesterday, and after a quick physical examination he said I had early stage / acute / active peyronie's disease.  He said he could feel the scar tissue.  Peyronie's disease of course had come up in my google searches, but I just never thought that could be it - I don't have any curvature yet and that was the primary symptom as far as I could tell in my preliminary searches.  He prescribed me CoQ10 200mg and Tadalafil 5mg and said he wanted to see me again in 3 months.  He handed me a piece of paper with information on peyronie's but otherwise didn't say much else about what I can do about it.  I started taking CoQ10 yesterday because the Tadalafil prescription wasn't ready. 

At some point last night after some more anxious internet searching, I stumbled upon this forum and I have to say - I am so grateful.  Both for the information, but also to know I'm not alone.  I have so many questions right now, and I felt like I had nowhere to go with them.  Like, I'm still having nocturnal erections - why???  Can priapism lead to peyronie's???  Is there something else going on - could the scar tissue actually be triggering some sort of nerve that is causing me to have nocturnal erections?  Dr. Kashanian said that I am just noticing the norcturnal erections more because they are painful - but I'm not sure that's right.  They aren't super painful just yet, and I'm just waking up as one does during the middle of the night to find I have a full erection.  Has anyone else experienced this???  I'm not saying the diagnosis of peyronie's is wrong, I'm just unsure of what to make of all this as it's all so new.  But it does make me wonder if I should be taking Tadalafil (cialis) given I'm having these night erections.

I have only begun to peruse this forum, but it has already been super helpful.  Again, I have no curvature yet, but I'm terrified that I have to sit and wait for this to play out over the next 12-18 months.  I just got out of a 4 year relationship last year, and now I'm terrified that I'll not be able to find someone who will be patient and understand what I might be going through. 

I'm sorry for the somewhat rambling introduction.  It feels good to just get this off my chest.  If anyone has a recommendation for a specialist in New York City or Philadelphia, please let me know. 

Thanks.
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38 years old
Symptoms began in Dec 2020 / Diagnosed peyronie's Feb 2021
In acute phase with no notable curvature, but notable shrinkage while flaccid and hourglass formation while semi erect.

gaussrifle

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Re: Diagnosed yesterday
« Reply #1 on: February 23, 2021, 04:23:19 PM »

Please buy and get on restoreX traction ASAP. I can’t stress enough how important it is to stop the curve from worsening. It’s hard to reduce a curve but quite easy in my opinion to maintain what you have through traction. If you do traction, the new collagen that’s causing peyronies will form parallel to your penis and will not result in any curvature. If you do traction stretching it will prevent length loss as well. I can’t stress how important traction Restore X will be.
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26 year old. 45-50 degree downward curve. Hourglassing when semi erect, changes to indentation on one side only when erect. Currently doing restore x traction and taking coq10 supplement with daily cialis 5mg.

Hawk

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Re: Diagnosed yesterday
« Reply #2 on: February 23, 2021, 09:53:33 PM »

gaussrifle,  Is there any reason you don't furnish the most important piece of information that is the first thing a new member needs to read?  I would appreciate it if you would let new members know about the Peyronies Survival Guide we developed.  It is critical they get the information so they can take action as soon as possible.

Here is the link.  I suggest you read over it, so you are familiar with how critical it is to get this info to new members. https://www.peyroniesforum.net/index.php/topic,3180.0.html

Thanks
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Prostatectomy 2004, radiation 2009, currently 68 yrs old
After pills, injections, VED - Dr Eid, Titan 22cm implant 8/7/18
Hawk - Updated 10/27/18 - Peyronies Society Forums

NeoV

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Re: Diagnosed yesterday
« Reply #3 on: February 23, 2021, 10:31:11 PM »

Priaprism is strongly related to pre-diabetes and metabolic dysunfction, and Peyronie's seems to be in a number of studies as well.

matty1998

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Re: Diagnosed yesterday
« Reply #4 on: February 24, 2021, 12:47:06 AM »

Frad0me,

Sorry to hear of your predicament but you have come to a very good information and resource site for Peyroines. What I’ve learned here is how variable the disease is, in age, degree /severity,  from relatively minor cases reported to really major ones requiring aggressive management. It seems every case is different. I’ve had Peyroines for over 6 years now, essentially untreated except for taking pentox the first two years. I have no idea if the pentox helped. It’s possible, but I just dont know.  My Peyroines specialist offered a surgery within the first few months of diagnosis, but I declined it wanting Xiaflex instead. I was told Xiaflex was not appropriate for my case due to hourglassing, and plaque distribution on ultrasound. My case was rather textbook. At 56 i just woke up one morning with a penile bend, having previously been straight as an arrow,  and when it didn’t get better in a week I went in and  got a diagnosis. There was no prior penile trauma, nothing.  My dad had it is all I know.  But even though I did nothing (other than let this ruin a relationship- the psychological harm it causes is overwhelming) it got better on its own with time. I know it sounds odd, but the bend lessened and the hourglassing just disappeared. Length was lost but the bend went to less than 30 degrees. Fortunately I never suffered Erectile Dysfunction, like many.  Why, I have no idea. So, I guess the point is hang in there, be positive, and your condition could stabilize or even improve. This is a very odd and unpredictable disease. In a follow up visit with my Peyroines specialist 5 years later when the hoursglassing disappeared, I was told surgery was now not an option (which I actually wanted) due to the risk at my age of Erectile Dysfunction, but all of the sudden now, Xiaflex was the best treatment option. Go figure.  That was simply to straighten it (along with traction). So, don’t lose hope. This thing can even get better on its own with no treatment.

Good luck to you.
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60, had Peyroines 5 years ago with hourglassing curvature, loss of girth and length. Prescribed sildenafil, and Pentox. No treatment, but saw spontaneous improvement. Hourglassing disappeared, girth now normal size. Curve reduced, length improvement

Juan

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Re: Diagnosed yesterday
« Reply #5 on: February 24, 2021, 04:33:49 AM »

Welcome Frad0dome,

Your introduction remind me that weeks before my peyronie onset I also experienced hard nocturnal erections (not painful at all). That was weird to me, as for many years I wasn’t having nte (that I was aware) (didn’t know that not having nte was a bad sign either).
By that time I was obviously not taking cialis, pentox, nothing...
Don’t think that was what triggered my Peyronies Disease.

However currently I’m very worried about night priapism as I recently had a nte episode freaking me out if it could have been priapism.
So I really understand your worry about cialis. It should be safe but if you already have this concern be very careful. Maybe start with 2,5 and put an alarm at midnight to check. Don’t know...

@neov, is there a way to know if one is in a pre-diabetes stage?
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38 yo. Onset Oct/20. 25º upward bend 1cm before glans. High erection angle.
Pentoxifiline 400 2/d. Cialis 2,5. Vit E, Vit C, Propolis, Omega, Ubiquinol.
VED. Starting manual traction.

frad0me

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Re: Diagnosed yesterday
« Reply #6 on: February 24, 2021, 11:11:09 AM »

Thanks, Matty.  I really appreciate what you said and sharing your story.  It is a good example of what this forum can provide that most doctors will not - a thoughtful, personal response.  When I walked out of the urologists office, I honestly felt like I had no guidance other than a piece of paper and a prescription.  Now, maybe there was little else he could do in my current condition, but I was feeling very confused and alone until I found this forum.  And your point that this is an odd and unpredictable disease is noted - I feel like I'm just beginning to understand that, but I am grateful for a community to learn with.
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38 years old
Symptoms began in Dec 2020 / Diagnosed peyronie's Feb 2021
In acute phase with no notable curvature, but notable shrinkage while flaccid and hourglass formation while semi erect.

frad0me

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Re: Diagnosed yesterday
« Reply #7 on: February 24, 2021, 11:21:01 AM »

Juan, thanks for sharing.  That is very interesting that you had a similar experience prior to your onset.  I think it is "normal" to have nocturnal erections, but something was definitely different about these.  What started to concern me is that I would wake up with an erection, go back to sleep, and wake up (who knows how much later) and I would again/still have an erection.  Again, if it had happened one night, I would not think much of it.  But it happened for weeks.  As you said, it wasn't painful - and I think my urologist misunderstood me, as he seemed to think I was just waking up and noticing my "normal" nocturnal erections because they were painful.  But they weren't.  In fact, my personal experience right now is that I have more discomfort when flaccid than when erect.  I was a little frustrated that my urologist didn't hear me out on that. 

and to NeoV's point, I would like to get a complete blood panel as suggested in the Survival Guide, to see if there is any information there that can be leveraged for my treatment plan.  I am a generally healthy person, so diabetes would come as a complete shock - but then, it wouldn't be the first time.
Logged
38 years old
Symptoms began in Dec 2020 / Diagnosed peyronie's Feb 2021
In acute phase with no notable curvature, but notable shrinkage while flaccid and hourglass formation while semi erect.
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