Long term pain poll

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Curvekiller94

Hi all,
This is a poll to see how peyornies pain is long term greater than 2 years. For me I still have pain that I was told it will go away in about a year it's been two years now. My doc assured me peyronies pain always goes away, but as I'm headed into rehab first quarter of the third year it seems unlikely but try  to believe it will go away.

Answer With a yes or no, if there is need to explain please explain below your yes or no.

Do you have had penile pain lasting longer than a year and a half?

Did your penile pain go away ever after more than 2 years?
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

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 :)

Sonic

No, pain for me only lasted 5-7 days.
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.

nemo

I'm about a year and a half into this current Peyronies Disease flair (I've had a few over the years), and the achy feeling around the scar when fully erect and for a while after is still present. Really wish it would go away as it always makes me nervous and stresses me out.

nemo
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.

Curvekiller94

Thank you all who have posted the more posts the better
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

FrankPD

I'm 13 months in.  My feeling now is discomfort once in a while where my main plaque is and only lasts about 4 seconds.  Pain was only the first month.
I have a girlfriend
Age 47, No injury
Diagnosis January 2022  
Six plaques
Hourglassing when flaccid and semi-erect
Only have my congenital curve
Massaging with vitamin E cream twice a day 
5mg Tadalafil, Healthy diet
Discomfort/aching sometimes

orriw

yep 5 years, i think you recognize me

What i believe is, me and you and some others with chronic pain dont have Peyronies Disease, Dr. trost agrees or says that could be true, also because we are to young to have Peyronies Disease

Maybe we are more sensitive people than average, and feel what others dont, i dont know.

I read you want to do surgery, before you do that i would recommend you try pain therapy by a pain specialist. They teach you exercises, psychological dealing and give you medications. I would try this before surgery
26y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

Curvekiller94

Orriw yes I agree. I just wish I could find the root cause as I'm sure you do to. It is hard to know what is the proper step to take. On one hand my erections aren't suitable for sex but on the other hand if I wasn't in pain the whole time I think I would have a fighting chance.

I suppose process of elimination. It's a difficult task to eliminate this type of thing when you cannot see the problem(other than an indent and curvature).

Do you know what type of pain doctor I should see? Every doctor I go to seems to be the wrong category. The only one that was close was a pelvic floor therapy but that was because they validated my pain it didn't actually help. I'm 2 pretty strong pain killers I take tramadol around the clock and Vicodin as needed(aka when ever I am "active")
Tramadol is great for daily pain and I feel little side effects. Vicodin is definitely a narcotic I would be lying if I didn't enjoy the way it feels, but I only get a weeks worth

But at the end of the day you are right and coincidence do happen. When I was an electrician there was a fire in the house a week after we were working in a completely different part of the home. The home owner called and yelled at us and we were investigated. After the investigation it was found to be a coincidence and there was no relation to the electrical work & the fire. My point being just because we have peyronies it may not be the source of our pain. I'm sorry you are going through it too as this is a more bothersome symptom.

I think I will still go to see dr. Eid but I'll tell him my concerns and maybe he will have a suggestion. If he doesn't I plan to find one of the best internists  in New York City and go to them with groin and penile pain and not call it peyronies and see where they send me. There is only so much more waiting around I want to do.  I  guess the time spent is only worth it if they find the problem. I'm sorry you are go in through this too if I find anything helpful I will relay the message. This is exhausting i better run I got a 14 hour day of work + school ahead of me. At least my Vicodin was renewed yesterday lol

 
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

orriw

Go to a well rated urologist and ask them for pain therapy and they may recommend you some that know about the pelvic  floor and maybe penis. But i guess the pain specialists wont touch your penis anyway.

Also dont rule out Pudendal Neuralgia and Hard Flaccid syndrome. I for example noticed that some stretched like deep squat that are not recommended with PN can flare up my symtptoms. But not always. My condition is also very strange, after all this time i still can not tell what really causes it and why there is sometimes sudden relief

Do you often flex your glutes unconsciously ? I do this very often, sitting, standing, unconsciously. I  am not sure if this is just a natural defense reaction to the pain or if it is part of the problem or even root. So i try to relax it whenever i remember
26y, injured at 21 :/

Reinjured late 2019 when having sex with weak errection.
No curvature, but rotation of the base to the left about 30degrees
Main problem: chronic flaccid pain.

Trying different stuff now

Curvekiller94


"Do you often flex your glutes unconsciously ? I do this very often, sitting, standing, unconsciously. I  am not sure if this is just a natural defense reaction to the pain or if it is part of the problem or even root. So i try to relax it whenever i remember"

Yes I do! I think it may be in reaction to the pain. But I am trying to relax those muscles often. I think it could be a mixture.

Maybe it is our body's reaction from soreness, then we clinch and it turns into a vicious cycle. Regardless we will be pain free one day we just need to figure out more.
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

Sonic

Your sig says sciatic pain radiating to the penis makes me wonder if somehow some nerve in your back may be involved here. Have you ever done an MRI on your back?
30 years. Sudden rightwards curve detected in June 2020
Narrowing on right side and about a 20° curve to the right.
ED + instability due to narrowing.