NTE Pain - Sometimes Hourly - Acute phase Part II?

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mrmarkdog666

Hi All,

New poster but I really need a community to speak with. I developed this disease out of the blue just over a year ago. At first, some very slight pain during an almost hook-up alerted me to the situation. At first, I chalked it up to just feeling a more intense throbbing with an erection. My heart sank later in the first month when I noticed a change in the shape of my penis and a slight upward curve developing.

Flash forward, I've been frozen by answers of what to and not to do. As everyone experiences, urologists are a hi and goodbye visit where they essentially say it could get better, get worse, or not at all. Come back when you want me to bill your insurance.

My newest symptom is nightly painful erections. On a good night I will wake up 2-3 times with a painful erection and the only relief is to try and use the bathroom. On bad nights as soon as I drift into sleep again I will wake up 30min later with pain and this cycle will repeat.

Has anyone dealt with this type of pain, or found a way to manage for peaceful nights?

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LWillisjr

Welcome to the forum, and sorry for the symptoms you are experiencing. You will find much help and advice here. We encourage all new members to update their signature block with some basic information about yourself (look at the bottom of my post).

In the acute phase I also had some pain when I achieved an erection (voluntarily or not). But it wasn't that severe for me and after a few months it subsided, leaving a 75 degree upward bend behind.
Developed peyronies 2007 - 70 degree dorsal curve
Traction/MEDs/Injections/Surgery 2008 16 years Peyronies free now
My History

thegreycat

Painful NTE are horrific for me too at the moment. I'll have a couple of weeks here and there where they're not as bad, but last night for example they were absolutely awful.

7 months in so far with a new nodule a couple of weeks ago and no reduction in pain, beginning to wonder if I'll ever leave the chronic phase.

Keep your head up friend.
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.

Indenialguy

Is the pain local to a specific area or pain throughout the penis?

I get nocturnal erection pain also, although sometimes I wonder how much of it is in my head. if I'm lucky enough to get an erection in the day time and I'm more with it, I notice it doesn't seem to hurt.

Its all so crazy and hard to know what is what.  
32 yo UK
Engaged with two young children
Injured 2017, healed
RE injured Sept 2022
Chronic flaccid pain since 2nd injury
Starting 5mg cialis daily, trying to obtain pentox online

Possible hard flaccid, possible Peyronie's, possible nerve damage

mrmarkdog666

Is the pain local to a specific area or pain throughout the penis?

I get nocturnal erection pain also, although sometimes I wonder how much of it is in my head. if I'm lucky enough to get an erection in the day time and I'm more with it, I notice it doesn't seem to hurt.

Its all so crazy and hard to know what is what.

----

I have been debating that point as well. Since my post, this issue has been constant. I've tracked it to basically two-hour intervals, where I fall asleep and then wake up with an uncomfortable erection. I will have to pay closer attention to a specific point for pain.

I do have an upcoming Uro appointment. I don't expect it to be overly helpful but I am going to look into treating this more seriously as a sleep/anxiety issue and hopefully have some success with meds on that front.

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thegreycat

Hey mrmarkdog666
Just wanted to update from my previous reply - my NTE pain has resolved through use of a VED. Is that something you're doing?
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.

mrmarkdog666

Hi thegreycat -

That is good to hear. I have continued to fight through it without much improvement. Some nights are worse than others. I believe I am slowly developing a new plaque that is causing my NTE issues.

I've been long hesitant about Traction or VED therapy thinking I don't want to make anything worse but I need to re-evaluate. I'm in the US but was there any brand in particular that you would recommend/had a good experience with? Thanks
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thegreycat

I use the SomaCorrect - it's a medical grade VED.
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.

Curvekiller94

Unfortunately for me the only way to manage these nights are to take pain pills prescription. It is hard because doctors protect these pills but it is the only thing that worked for me I had to beg for them from many doctors finally a rheumatologist gave me a prescription of Vicodin and one of tramadol Vicodin is only when really needed tramadol is taken daily  
28 y/o
sex injury - gradually got worse
Hard flaccid, Indentation bottom left close to my body,  mild twist left
28° up 28° Left
official diagnosed @26 peyronies w/pain
Pentox, cialis, NSAID, tramadol(as needed)
Sciatic  pain radiates penis to foo

Twilli81

So I had the same thing 12 years ago when I first got Peyronies. They finally dissapeared for a long time, then started back again a few months ago due to reinjuring myself. I wish I could tell you exactly what helped me the first time. I'd immediately try a cocktail of advil (if you can take it without stomach issues), viatmin e, colchicine (have to get that from your doctor), omega 3, and arginine to see if this helps you. Id also abstain from masterbation as much if you do it a lot. Scale back on it. There also some other prescription meds that can help with scarring, Id ask a urologist for those. Identify a doctor in your area who specifically treats Peyronies, dont go to a general urologist, they wont help you at all.  
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