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Other Peyronies Disease Discussion Boards => Coping with the pain caused by Peyronies => Topic started by: mrmarkdog666 on September 27, 2022, 06:38:58 PM

Title: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: mrmarkdog666 on September 27, 2022, 06:38:58 PM
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?

Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: LWillisjr on September 27, 2022, 07:52:50 PM
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.
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: thegreycat on September 28, 2022, 08:45:55 AM
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.
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: Indenialguy on November 20, 2022, 06:30:17 AM
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.
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: mrmarkdog666 on November 26, 2022, 11:36:46 AM
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.

Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: thegreycat on January 05, 2023, 04:16:00 AM
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?
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: mrmarkdog666 on January 25, 2023, 05:15:38 PM
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
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: thegreycat on January 26, 2023, 04:05:30 AM
I use the SomaCorrect - it's a medical grade VED.
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: Curvekiller94 on February 04, 2023, 11:24:16 AM
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
Title: Re: NTE Pain - Sometimes Hourly - Acute phase Part II?
Post by: Twilli81 on February 08, 2023, 08:31:33 AM
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.