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[James884]

I've been living with pain at the scar site whilst flaccid for years now. I know there's a few guys out there in a very similar position to me. We all know how greatly this impacts on our lives.

It would be nice if some of us in this situation try to come up with things that have helped in the past (any sign of improvement no matter how small) basically for us all just to share our knowledge. I know I'm clutching at straws here haha.

I have no pain when erect. Just when flaccid. I injured my penis drunk through sex but all was fine afterwards. Then a year later I had a priapism due to prescription drugs. This is when my problems really started. It flared up the original injury. I had an MRI and this confirmed I had indeed suffered from a fracture/trauma in the past. I've been told I don't have peyronies because the scar is soft. However I have a dent/narrowing/hourglassing on my right side when my penis is flaccid and cold. Will try to include some pics.


I wish I could of done a few things different from the start after my injury. I wish I'd of kept the area warm. I wish I'd of tried to get my cardiovascular system working better by jogging and exercising. I think this would of helped massively.

Do you think we could be deficient in a vitamin, that keeps our wound/scar from healing? Personally I think it's healed all it's going to and this is the final outcome.  I'd just love to know what it is what is causing the pain. Nerve? Scar tissue that's just not as flexible as the healthy tissue?

I work in a temperature controlled environment that is set at 0° I believe this doesn't help at all. I put on 3 pairs of boxer shorts some days haha. I do suffer with cold hands/feet quite a lot. Maybe my poor circulation is the problem.

God I'm just desperate. Anyone else with any theories, or even just to share their own experiences with flaccid pain.

Cheers guys

[Mikel7]

So it was confirmed through the MRI that you don't have peyronies but you only have pain when flaccid? 
I wonder if you have some slight nerve damage or other muscle/pelvic disorders contributing to it? Nerves can take a long time to heal up. Your erection looks normal.  Did you have your circulation checked in your penis when they did the MRI?  Ultrasounds will clearly show the blood circulation and if there is a problem. I believe the cold temps do not help things out either.  Do you exercise or walk regularly?  Do you have healthy eating habits or smoke? Just some things to consider.

[chemistry]

I havent been diagnosed with Peyronie’s yet (though I highly suspect I have it at this point) but I found heat has been the most helpful so far for pain. Anytime the tissues there are scrunched up either from being cold or tightening up the pelvic floor that seems to trigger or worsen pain (i assume due to the scar tissue pressing up against the healthy tissue but i have no idea or if that makes any sense).
So yeah so far heat, keeping the penis hanging low by not clenching the pelvic floor, and NSAIDS help for me

[James884]

So it was confirmed through the MRI that you don't have peyronies but you only have pain when flaccid? 
I wonder if you have some slight nerve damage or other muscle/pelvic disorders contributing to it? Nerves can take a long time to heal up. Your erection looks normal.  Did you have your circulation checked in your penis when they did the MRI?  Ultrasounds will clearly show the blood circulation and if there is a problem. I believe the cold temps do not help things out either.  Do you exercise or walk regularly?  Do you have healthy eating habits or smoke? Just some things to consider.

Hi Mikel. Yes the urologist told me it's not peyronies. Said there is no hard plaque, just scar tissue. It's all soft to touch, no hard lumps. The scar is quite easily visable mind. Said it is from a previous fracture what has healed 'nicely'... not nice being in constant pain! Because it works and looks straight on erect they're simply not bothered.

No they never checked anything about my circulation, no ultrasound. Just the MRI.

For years I've never really exercised. I sometimes go for a jog now, but I'm not strict with it. It does feel better (not perfect but better) then It always returns as bad. I can be guilty of being a bit lazy. I really need to stick to it. It's difficult at times. Would love a running machine so then I don't have to leave the house lol.
Yes I've tried to improve my diet too and have never smoked. I do have asthma though. This has been worse because of some black mould/mold in my house. (I am moving soon) I often get low oxygen readings on an oximeter. Between 92-95% on average. I think I've not healed as good as I could of because of the poor circulation and low oxygen levels. I dunno it healed fine with the original fractue/trauma, just the priapism really did the damage to that scar... I need to try to exercise more but I think the damage has been done after 3 years, and no amount of exercise is going reverse the damage now. Who knows. Thanks for the reply.

[Hazelboy98]

James, exercising and squats have made a huge difference in how much pain I feel. Yeah for me it also eventually returns to the same irritableness I had before exercising but for a few hours I can feel pretty close to normal, it's almost as if it resets my pain, works everytime. And hey getting fit is just a bonus

Also leaving my job that required me to walk around and be on my feet for more than 8 hours a day and switching to sitting down the entire time. Walking hurts me which is bizarre since exercise does the opposite but I know I couldn't bear to have to pull another grueling 9 hour shift lifting people to and off toilets (I was a CNA and nursing student, those ambitions are over now)

Some other random things that relieve pain for me -

- pooping

- sitting on the toilet with my face buried into my knees

- drinking caffeine

- waking up from a nap or sleep always seems to reset the pain

- Watching really good anime

I have no idea what's causing the pain for me since they didn't even find inflammation or damage on my MRI but I suspect it's some kind of invisible scar tissue science hasn't discovered yet

Good luck finding relief from your pain!

[James884]

Hazelboy98 I can honestly relate to the just after waking up and feeling hardly no pain at all. Also the pooping bizarrely. Will keep up with the exercise and squats cheers.

And to the user Chemistry, I definitely agree with the heat thing. Don't think I've done myself any favours by working in the cold. The last few days I've wore a heat patch between two layers of boxer shorts. Can you imagine. It certainly helps though in stopping my penis shrinking up into that horrible hourglass bent shape when it's freezing cold. Need to change jobs. There's not much work in a small seaside town though. When it's normal room temperature it has a relatively normal shape to it. I remember being at work a few months after the priapism and every now and then I could feel an abnormal sensation down there. Felt like my penis was being bent into a U shape at the scar site. It would only last for a split second then go. I bet that was the scar tissue forming/healing.

[James884]

Hazelboy98 does your pain also go when erect? Thanks

[Hazelboy98]

Hazelboy98 does your pain also go when erect? Thanks

It goes away when I'm erect, I mostly only have pain when I'm flaccid and walking around.

Urologists are useless at figuring out why that is and prefer to call me crazy

[James884]

It goes away when I'm erect, I mostly only have pain when I'm flaccid and walking around.

Urologists are useless at figuring out why that is and prefer to call me crazy

Wow you're symptoms are incredibly similar.

I have found with the urologist they really aren't bothered. If you can still achieve an erection they really don't care, pain or no pain.
If you ever find anything that helps please let me know, and vice versa.

Sorry for the questions but after your injury did you still carry on masturbatung and having sex? I believe this is also another factor in why I have pain because I never left it long enough to heal initially.

[Hazelboy98]

Sorry for the questions but after your injury did you still carry on masturbatung and having sex? I believe this is also another factor in why I have pain because I never left it long enough to heal initially.

I tried my best to not touch it for the first month after I realized I did something wrong. Then I would try not to touch it for at least a week in between for a while and occasionally attempt to not touch it for a month again when I started getting desperate, I stopped wearing underwear and pants after that injury and now exclusively wear baggy basketball shorts whenever I need to go out in public. I never felt too different in regards to pain going on those long no touching periods though. But I also don't know how things would've turned out had I continued masturbating for hours on end every day after the injury. I might of ended up a lot worse possibly.

I'm at a point now where I can safely masturbate 5 to 10 minutes once every other day right before bed, I wake up feeling normal. No idea what sex would be like but I'm glad I at least have a somewhat consistent routine of masturbation, having to withhold orgasms during the first year of this injury was so utterly miserable. Even then though I still hate how structured my masturbation/sex habits need to be, I can't just randomly decide I want to orgasm when I feel like it, I have to wait right before going to bed every other night to do that or else it gets risky. Having the freedom to masturbate/orgasm whenever someone wants to is probably the greatest privilege everyone takes for granted until they lose it, I can't believe I didn't understand the luxury and convenient comforts I had before this injury would take over my life, I mean life was actually a dream to me until I had to deal with this pain and paranoia

Like it's amazing how beautiful this world is and then this pain just makes it all seem so trivial and meaningless since the only true thing I desire now is liberation from pain in the most sacred part of my body

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