Have had Peyronies Disease for a little over a year now. Have flare ups of pain monthly. Is that just pain flare ups, or indication of disease worsening?
charlie44
It may be or not progression of Peyronies. You have to try to see if it is connected to something you are doing.
How long you have those monthly flare ups?
What is your treatment right now?
I also think that you should go to see your uro, he may understand what the problem is.
James
since this topic is about pain, i was wondering if anyone, besides myself, has pain free erections but near chronic pain in a flaccid state.
steamer
Steamer,
I have pain-free erections but when flaccid (particularly after sexual activity) there are two spots that become tender or even slightly painful when pushed or squeezed on. It has been this way the entire time I have had Peyronie's and I have not had any physical worsening (instead, I have had some improvement over the years). My guess is that there is some scar tissue right by a nerve that becomes stimulated when the scar tissue is "bunched up" while flaccid, but the stretching of the scar tissue during erection moves it away from the nerve.
I don't have any reason to believe that it is due to inflammation. The inflammatory pain I felt when I first got the disease after injury was very acidic and sharp and this feels more like a dull ache or pressure. Anyway, hope that helps.
Skjald
to me, that makes sense. most of the time it hurts while i'm sitting but not always. when it happens i have to adjust and wait for it to ease up because at times it's pretty sharp.
steamer
I think it depends on the origin of the pain. I recall that Dr Levine once told someone with peyronie's pain that lasted for a very long time that it might be nerve damage of some kind. No pain is never good news (since, well it's pain), though don't I think that it 100% correlates to a worsening of deformity. Whenever I felt pain I took a better safe than sorry approach though, and made sure that I was on pentox etc.
Unfortunatley, Pain is part of the deal. You have to learn how your disease is effecting you as there are many types and intensities of pain. Most folks here have some degree of pain. If your pain is intense or putting pressure on a nerve you should take an anti-inflamatory. I prefere herbals as they work for me and don't have the side effects iburprophin or other drugs have. I use topical herbal salves and oils like St. Johns Wort, Comfrey, and Solomon Seal.
I also use the enzyme based Wobenzym as needed. It is expensive but it works and does not eat up your digestive track or run you liver down.
I am not trying to sell anything but I realy think and believe this is a healthier and therefore better way to go. These are options most people don't know about. Most Doctors don't either. The kid working at the health food store may or may not know about these options.
Here is one idea to help you understand if you are progressing or going backwards.
Keep a daily log.
Rate you pain on a scale of 1-10. Also give it a description and frequency. i.e. burning, dull ache, sharp, radiating etc. Note when it happens and if some activity triggers it. Every now and them look back and reflect where you have been and how are you know in relation to when you started. Use this to help you make decissions and evaluate what you have tried.
This will help your evaluation be more objective.
Good Luck
Quote from: steamer on September 09, 2012, 07:42:43 PM
since this topic is about pain, i was wondering if anyone, besides myself, has pain free erections but near chronic pain in a flaccid state.
steamer
Me...
Sadly, I think pain its progression. I have had the worst flare up recently and its when my penis have developed more things, like this slight kink to the left and a very subtle indentation. So working hard in suppressing the pain its indeed working for suppressing progression in my opinion. When it hurts its because the penis its atrophying, deforming, bending, whatever. The process that leaves you with lumps or kinks or dephormities is the pain. Those changes that vessels, tissues etc undergo are painful. I think this is true in my personal case.
I have no definitive statement from a Peyronies Disease medical authority but I think logic only supports one conclusion, pain = progression. That logic would conclude that the pain is caused by inflammation and that the inflammation is the body focusing scar production activity on the penile tissue. This is very similar to what happens in the normal wound healing process only without the wound. All of this is referred to as the "active phase" or "acute phase" of Peyronies Disease.
Recently it feels as though my scar has begun to soften and become more fleshy. Pain on the whole is not too bad either when flaccid or erect, though curvature is still pretty bad and showing no real sign of going away.
The real change I've noticed though is that even the gentlest prod or examination of the plaque lasting just a few seconds will now lead to an extended period of aching pain and real discomfort usually lasting a couple hours or more. It's basically like a festering wound that is shouting don't touch me and I wondered if this is at all usual and what it means. During the period of pain the scar itself becomes more inflamed and less flexible but only calms down when left well alone. The scar itself is still pretty big.
What if pain was acute for a year say and then slowly goes away even after quitting the meds.
Does in such a case no more pain = no more progression??
This is a question I have as well. I also have pain mostly on erection but sometimes not. It hurts the worst when erect and almost every time. I have had the disease for over a year now and I stopped my meds recently (about three weeks) due to side effects (pentox, colchicine, alginine, enzymes, co-enzyme Q) and the pain on erection seems to be getting worse. I have the hour glass effect and a 10 degree bend to the left. I have lost significant length and girth also. I have taken break from the VED also. I started treatment relatively early, within three months of the diaganosis. I don't like the way the meds make me feel but I think I'll go back on them.
BigFish
Difficult to answer:
Quoteno more pain = no more progression??
Myself had no pain but the disease progressed slowly during three years.
Maybe I had no pain because the very slow progression so it may be right that "no progression=no pain"
James
I was hopeful at over a year with the disease the progression would be lessening but apparently not, at least in my case.
BF
I think pain can be a sign of worsening but not necessarily so. In my own case I have a flair up in pain after sexual activity but I in fact have not noticed any worsening of my condition for almost a year now. I wish I understand why my pain increases after sex. But I don't notice any "damage" being done to the shape of my penis, only increased pain, which could be as simple as my nerves are irritated (whatever that means...). So in this case, I don't think my flair ups in pain necessarily mean worsening of classical symptoms.
I was wondering if anyone else gets pain on the glans, more specifically around the meatus (the opening)? Mine is part purplish and often sensitive after erections. The feeling is similar to a warm inflamed sensation that hurts but doesnt sting. It is NOT pins and needles.
Is this part of peyronies? I do have a downward bend so I dont know if this is cutting off blood flow to the area? When I was younger my glans where nice and pink, and even red! Now they seem pale and darker.
I read that a bluish purple color is often a bruise or dieing tissue? Can anyone comment?
ryanchan
I don't know how old you are, you have not stated age in your profile, but slightly changes in the color it may be from ageing indeed.
I had in the past around the opening as you describe at the start of my Peyronies, but it's gone. It can be from Peyronies, can be also some kind of infection. If you will make an urine lab test you may see if it is an infection or "just" Peyronies symptom.
James