do most peyronies sufferers have some flaccid discomfort?

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powderpowder

just asking because while I have a plaque and some hourglassing, I don't have pain when erect but sometimes when flaccid i get everything from aches near my plaque, stinging feelings sometimes, pinching feelings and burning sensations that could range from the plaque site to below my glans on the left side (not near my plaque)

Is this just some bumps in the peyronies road?  These feelings come and go and right now i've been having new burn/stingin feelings for the past couple days.  Hoping others have experienced this as well.  

UrsusMinor

Oh, yes! Yes yes yes. Especially for several hours after ejaculation. It tightens up and sulks and hurts. I've had all the sensations you mention, as well as oversensitive skin on my penis. And that isn't simply a sensation. The base of my glans on top actually got rubbed all purple and discolored for a while, even though it wasn't being abraded by anything more than my normal clothes.

Once a plaque was actually apparent, it felt as if a lot of the pain was radiating from the left edge of the plaque, as if it were sharp and cutting me. Often it feels as if things are moving around inside there. And I have pinching feelings, like a sharp needle, at the base of my glans. And a general achy, irritated, inflamed feeling.

I have pain on erection, too, but it isn't nearly as aggravating as the flaccid pain. And there is nothing like a really long plane ride to make flaccid pain almost intolerable.

Pain, whether flaccid or erect, seems to be quite common in the early stages. Some doctors associate the disappearance of pain with the transition from the acute to chronic phase of the disease. (Although there are plenty of people here who, for good reason, question whether these well-defined phases really exist.)

My pain has gotten gradually better, and it seems to be associated with how well my flaccid hang is doing. When I'm tightened down ('hard flaccid,' if there really is such a thing) it is more likely to hurt. When it's loose and floppy, I seldom have pain.

I have been doing so many things at once that I'm not sure exactly what has helped, but certainly the greatest pain relief for me has come from hot baths. VED use has helped, too, but I've been cautious about VED to the point of paranoia, because I am certain that overpumping would send my pain levels through the roof.

Maybe that's more than you wanted to know. The good news is that it suggests you are still in the early stages of the disease, where the body is trying to work out how to heal. At any rate, that's what I keep telling myself.  ;D  

NeoV

Yes we do, and it got worse over time.
For me I had bending and soreness after ejaculation for years until I became a chronic deformity affecting my flaccid penis. I still have discomfort but it's greatly reduced now that I'm much better.

Thisismyusername

I had pretty bad pain on my penis for about a year when peyronie's disease started.  For the past 4 months it's been pretty much gone but after masturbating about a week ago it's started up again and things feel just as bad as a year ago.  It's a constant aching, burning sensation in the left side of my penis around where my penis curves, with occasional pinching/shooting pains.  Erections have hurt a lot worse for the past week than they did before that.  I'm pretty sure this is all an indication of an inflammatory response and possibly additional scar tissue being created.  

I think this kind of thing is actually pretty uncommon for people with peyronie's disease.  I say this because most people on the board report pain only during erection.  In fact I have noticed a lot of people on the board have repeatedly brushed off people who are suffering from real chronic pain while flaccid.  I've been told repeatedly that this kind of pain is not a symptom of peyronie's disease.  It certainly is not a symptom of "classic" peyronie's disease, but really, how many people have "classic" peyronie's disease here?  Everyone's story is different.  For me I seem to have a lot of diffuse scar tissue and inflammation in my penis that is especially concentrated on the left side where my penis bends about 10 degrees during full erection.  My primary symptom is pain while flaccid, exacerbated from sexual activity.  Secondary for me are pain while erect, some relatively minor deformities including a 10 degree curve, and minor venous leakage.  

welshwales

I only experience pain while flacid. My Peyronies Disease deformity is such that it is evident even while flacid. It occurs during a new plaque formation, and for several months after. I sometimes get a distracting tightness while erect, but not real pain.

skunkworks

This is an emotionally destructive condition, we all have it, let's be nice to each other.

Review of current treatment options by Levine and Sherer]

NeoV

My edema has caused flaccid pain, shooting stinging in various parts of my penis. It's most likely from damaged lymph vessels and veins, and not related to peyronies though.

powderpowder

I am 9 months into peyronies since my injury and still in the "acute phase" i guess, ive been on pentox for 5 months now and these newer sensations started this past wednesday when i smoked marijuana :/ maybe the pot could have affected something but it feels much better today and it didnt hurt when i had an erection or sec yesterday....just venting here


For those who get pain on erection, do you guys occasionaly get flaccid pain/sensations also? And the guys who have chronic pain did a urologist confirm plaques and what do they do to try and treat it?  

Thisismyusername

My urologist did an MRI and did not see any scar tissue.  I never had an ultra sound.  I am sure I have scar tissue though, but probably not in sufficient concentrations to feel a lump or show up on an MRI.  

Urologists typically do nothing to treat pain and don't take it seriously.  Although I did get one to give me a shot of corticosteroid and it may have helped (it's hard to say because I was improving naturally at the time of the shot).  After 4 years with pain, how I recovered - Peyronies Society Forums

I doubt marijuana would affect your penis but it certainly might affect your perception of your penis.  I'd not smoke if it is causing you weird feelings or pain.  

UrsusMinor

Quote from: Thisismyusername on August 03, 2014, 08:45:15 AMIn fact I have noticed a lot of people on the board have repeatedly brushed off people who are suffering from real chronic pain while flaccid.  I've been told repeatedly that this kind of pain is not a symptom of peyronie's disease.

I hadn't noticed those sorts of 'brush-offs.' Before I came to this board, I had already read many articles on Peyronie's, and I was aware that pain while flaccid was common in the early stages--in fact, was often identified as a part of the 'acute phase.' To quote from an online article http://www.urologicalcare.com/reconstructive-urology/peyronies-disease/

Typically, an episode of Peyronie's disease is self-limiting, with the symptoms of pain resolving within 12-18 months. An acute or active phase during the first six months usually ends spontaneously. This phase involves pain of the flaccid penis, and pain with erection or intercourse. Curvature may be moderate, and the plaque or scar tissue may diminish or soften. After about eighteen months, no further deformity or scarring of the penis occurs, and usually the pain disappears.

So, because of many articles like that, I haven't thought my flaccid pain was at all unusual!

NeoV

The pain could also be from the initial injury, not necessarily from the plaque. I think any penile injuries take months and months to heal, if they ever heal at all.

UrsusMinor

Not to mention that the acute phase(s) of Peyronie's are an inflammatory state. Inflammation hurts.

Thisismyusername

UrsusMinor,

Most of the descriptions of peyronie's disease I have read did not include flaccid pain and I've had multiple urologists tell me that flaccid pain is not a symptom of peyronie's.  But I guess everyone has a different experience with urologists and in general.  Based on the link you provided it is at least recognized by some that flaccid pain can be part of peyronie's disease.  

When I say "brushed off" I am including things like people saying to take ibuprofen, or pentox, or CoQ10 for my flaccid pain.  And I don't mean to imply that these people did not mean well, because I'm sure they did, but I have tried all of those things and they did nothing to help at all.  I'm also including people telling me to keep having sex even though it made my pain a lot worse.   This includes every urologist I've talked to and multiple people on this board.  When someone makes that kind of suggestion I assume they don't understand the severity of the pain I had.  

I remember that I had to push for the creation of this section for coping with pain because it wasn't recognized as important enough to have it's own section when I joined this forum and I had to make posts about pain in the Open Questions and General Comments section.  (By the way I want to thank the moderators for creating this section, I don't mean to come across as ungrateful).

Anyways sorry if this is coming across as very negative.  Guess I'm not in the best mood right now and I've had a pretty rough experience with this all and a difficult time finding any real answers to my situation.  I don't mean to offend anyone who disagrees with me, because everyone has their own experience and different things work for different people.  I can just say that none of the standard advice has worked for me at all and I got a feeling that only a few people on the site understand my situation (and it was very difficult to get doctors to take the pain seriously).  I have met a few people on this board that were going through similar things that I have been going through and that has helped a lot.  

UrsusMinor

Hi, Thisismyusername--

How long have you had Peyronies Disease?

I guess I was expecting the pain, because of everything I'd read. And on other forums, I had read a lot of complaints about pain with hard flaccid, even from people without Peyronie's.

I even tell myself that the pain is good, because it means that I'm in the acute phase and pain means there is still hope for change for the better. I may be kidding myself, but it helps me cope. I find the pain extremely distracting, aggravating, and, like all chronic pain, ultimately a little depressing. (On the other hand, as few years ago I had a severe case of shingles, and what I'm experiencing with Peyronies Disease is nothing compared to that. So maybe my evaluation of pain levels has shifted.)

As to the sex issue, from the first time I looked through the boards here, I noticed that there was a big divide between the "use it or lose it" faction and the "give it a rest" crowd. The problem is that what we are coping with is so individualized.

For me, I found that sex made it worse, so I have stopped for a while, and it seems to have improved things. I think if you're in an actively inflamed state that sex is quite likely to make things worse. It's the same logic that makes doctors tell you to rest a sprained ankle.

On the other hand, once the inflammation has gone down, they encourage you to get some careful exercise. A sprained ankle isn't a perfect analogy, because the acute phase of Peyronie's can last more than a year. (And apparently can reactivate, according to some here.) But I can see that what's right in one circumstance might be bad advice in another. All I can do is try to listen to my body.

Thisismyusername

I've had it for 15 months.  For me flaccid pain lasted 11 months, erect pain never stopped.  I've had 4 months pain free while flaccid.  Lately after masturbating my flaccid pain has come back and has been bothering me again for a week or so now.  

I guess some people might view pain as good if it indicates the acute phase if they have relatively low pain and relatively major deformity, since they have hope that the deformity will be more treatable if treatment starts early, and they are confident their pain will disappear naturally.  But things couldn't have been more different for me.  I personally had pain for almost a year and yet after the first month or two had no significant change in deformity.  My pain was so bad and so destructive and lasted so long that I thought it might never go away.  My only truly damaging symptom is pain (the rest of my symptoms suck but ultimately wouldn't effect my sex life much if it weren't for the pain since they are mild).  Most people's primary symptom seems to be either deformity prohibiting sexual intercourse or major ED.  But neither of those applies to me.  

I definitely don't see any truth to the "use it or lose it" idea.  On one hand I think there are many people who are safely having sex with peyronie's disease and it isn't making them worse, and in that case, they should continue to do so.  But I don't see how not having sex or not masturbating is going to hurt your penis.  Never getting erections would be bad, but I get erections without having sex or masturbating, either by being naturally aroused or at having natural erections at night (although nighttime erections are a lot weaker and more sparse than before).  

I guess in my case because of how badly sex and masturbation have irritated my condition I think it's best for me to avoid both for as long as possible.  I don't know if it will eventually be safe again but probably not for years to come, if ever.  But I recognize that most people are not in this situation.  I would just be happy for the pain to go away and to be able to live a pain free active life again, even if I can't have sex.  Not having sex would be very, very hard, but when you've had serious pain every day for a year you realize that there are worse things.  There really is more to life than sex, even if sex is one of the best parts.  

Anyways, enough of my ramblings for today.  I've been talking too much.

melting

Never had flaccid pain but sometimes hard. I think big part is where the plague sits. If it hits a nerve then of course it will give pain.

I also agree with Ursus Minor. After caring extensivly about getting my plagues soft I experienced some minor pain which at least shows me something is happenening. But this is of course highly individual and could also mean worsening.
Daily Transdermals and Traction/VED solved my Peyronies Disease https://www.peyroniesforum.net/index.php/topic,12587.0.html (DMSO+X)

NeoV

Guess I should add,

Ever since Peyronie's started, I've had a slight sensation and pain in the tip of my urethra. It's nearly constant, and corresponds to any tension I have in my pelvic area. Now while I know that sounds a lot like prostate issues, I haven't had much prostate pain for quite a while. Strangely, if I touch my urethra where I suspect the plaque is, I can feel it there (mid shaft) and also at the tip of my penis. It seems that the plaque is hitting or compressing the main nerve in my penis. When my Peyronies Disease was worse, this sensation was really annoying, mostly mid shaft and just standing or sitting was hell.

Forum member alwaysreading reported the same phenomenon, where since getting Peyronies Disease touching the urethra mid shaft or at the base would cause a sensation in the tip of his penis. Hell, maybe this exists in all of us or maybe it's actually due to over vascularization of veins running over the urethra due to trauma. I have simply no idea, hoping the ultrasound will help.

Anyway, as far as bad sensations or pain goes, all I have now is that lingering pain or sensation in the tip of my penis, and slight pain in my low abdomen from a year old VED injury which still remains a mystery (Thanks Doctors!).

-V


powderpowder

Had emergency kidney stone surgery this past sunday to remove a stone. Ureteroscopy and laser lithotripsy.

Got my stent removed this past thursday, and a while after I was feeling great and masturbated to see if everything was still working smoothly, and no pain on erection everything seemed good.  But shortly after, almost every time when i urinate at the end of the urination i get a straining sensation above the left side of my penis and it radiates down the left side of my penis also.  now once or twice throughout the day i get a pretty bad aching sensation on the left side and the urge to urinate frequently with kidney pains as well.  I was looking all over the place and i can't find anything so i figured you guys may have some knowledge on kidney stones and such.

Did i go back to masturbating too fast? Is this a normal symptom of renal colic and post stent removal recovery? I know this isn't really peyronies related but since I do have peyronies its also scaring me being that i'm dealing with enough stuff.  Just praying this is part of the healing process and goes away soon  

UrsusMinor

I had a friend who developed a bad kidney stone problem. After surgery he reported all kinds of side effects related to urination, including false urgency, some degree of pain in surprising places, and some degree of incontinence. It took him a couple of months to get back to normal.  

Old Man

Powder:

Just my 2 cents worth FYI. I have had three large kidney stones broken up in the ''tub'' also. My uros (one man and one lady uro) told me definitely NOT TO DO ANY SEXUAL ACTIVITY'' while recovering from the tub trip. They stated that any sexual arousal and/or sexual activity would cause more inflamtation which could lead to problems.

So, I took them at their word and stayed off the sex for at least 10 days afterwards. I had no problems with any of the symptoms you state that you developed. IMHO, I believe that you did engage in sexual activity way too soon after having a stone broken up.

Old Man
Age 92. Peyronies Disease at age 24, Peyronies Disease after
stage four radical prostatectomy in 1995, Heart surgery 2004 with three bypasses/three stents.
Three more stents in 2016. Hiatal hernia surgery 2017 with 1/3 stomach reduction. Many other surgeries too.

UrsusMinor

Quote from: NeoV on August 06, 2014, 01:40:41 PM
Ever since Peyronie's started, I've had a slight sensation and pain in the tip of my urethra. It's nearly constant, and corresponds to any tension I have in my pelvic area.

Hey, Neo--have you tried the 'tennis ball' trick for pelvic tension? (Sitting, usually in a chair, with a tennis ball under your perineum, and allowing yourself to relax onto the ball. NOTE TO ALL: If you've never done this, take it slow and easy! Like a lot of things in that region of the body, from stretching to VED, something that is good can hurt you if it's overdone!)

I now keep a tennis ball on my desk. It gives me quite a bit of relief from involuntary internal 'clenching.'

29mUK

I do, constantly. To the point where I don't wear underwear & only very loose jogging bottoms/sweatpants, because any pressure just makes things unbearable. Not ideal in my suit & tie job, but luckily my boss allows me a degree of flexibility!!!

NeoV

Hey Ursus I've never tried putting any pressure on the area since I think I may have injured it biking as a kid. I might help if I'm careful though so I'll experiment.

UrsusMinor

Since you are the King of Manual Stretching, I am sure you are capable of trying it without overdoing it!

I now have a tennis ball on my desk--although my friend's dog thinks I really ought to give it to him.