Painful flaccid penis! When will the pain stop?

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Worried Guy

I'm now 4 and a half months into peyronie's and I'm still getting pain throughout the day.  It started mid December and was so painful I found it hard to sit in a car due to vibrations and sometimes even sleep.  I ended up applying ibuprofen gel and taking ibuprofen tablets.  I started taking pentox and Coq10 6 weeks a go and this may have helped but It's hard to tell as it could just be natural progression. The ibuprofen gel caused me to develop eczema on my penis so I had to stop that. The pain now comes and goes.  Some days I hardly notice it but like today it is back with some vengeance.  I'm not sure if I'm doing anything to cause this.  Should I be avoiding gentle sex?  My curvature is not severe and does not impede intercourse.  I have a 1 cm plaque on the left and slight hardening on the right.  It is this 1 cm lump which is causing me so much pain.  How can such a small lump ache so much.

When I told my doctor that my pain was flaccid he looked surprised.  I told the two different Uro's the same thing and they both looked puzzled.  They assumed my pain was when erect but actually I have no pain then whatsoever.

Any suggestions on what I can do to tackle this? The pain is a constant reminder of this horrible situation.  

Luciano

Stupid question: did you have an ultrasound made to see exactly what it was. You might have peyronies on one side and maybe something else on the other.
I had a lump that was worrying me on my neck and when they made an ultrasound they told me it was just some fat sourrounded by fiber (so called lipofibrom)
I had never thought of that.
So maybe the flacid pain comes from something else completely different and in addition to that you have peyronies.
(Just a guess) but ultrasound should give you some info.
Luc

Worried Guy

I've not had an ultrasound but I'm pretty sure (99%) I have peyronies.  Well I've been told I have.

Luciano

Quote from: Worried Guy on April 21, 2011, 03:21:47 PM
I've not had an ultrasound but I'm pretty sure (99%) I have peyronies.  Well I've been told I have.

No !!! I meant something else.

You could  have peyronies plaque  PLUS (in addition) something else that causes the pain in flacid penis.

thats what I meant.

You  should have an ultrasound to check that out.

L.
But this is just a guess.

Worried Guy

Yeah I would like to have an ultrasound to get a better idea of the true extent of the damage anyway.  I know what you are saying, I just don't know what else it would be.  When I first went to the docs it was a junior and he said it could be a cyst.  He gave me antibiotics but then it did not go away and he said it was peyronie's.  

rd

I'm almost at the 8 month mark after being diagnosed with peyronies, my pain is when flaccid. I have no curve just a dent. I keep hearing that the pain will go away but it hasn't in almost 8 months. When I asked the peyronie's expert I saw at John Hopkins when I should expect the pain to go away all he could say was eventually. Where does one even get a ultrasound done? Can it be done while flaccid? All I have had done was a mri which showed nothing and doctors physically examining the lump/plaque.

Worried Guy

Rd, i'm the same as you.  The head is curved 10 degrees and I have a dent above the lump which is about 2/3 up.  I feel lucky because I don't have a bad curvature which is stopping me from having sex.  The dent is also annoying but it is also not going to stop it working.  What is hardest is the pain and knowing i'm still in the early phase and this could get worse.  The pain today is better than yesterday probably because i've been wearing shorts but who knows how it will be tomorrow.

rd

Yeah we are almost in the same boat. I don't fill up above the lump properly, its on the right side of my shaft about a thumbs width down from the buttom of the head. I can still have sex and have twice in the begining since the onset of this but have stopped because it hurts after sex is done. I've chosen not to have sex for a while because it isn't enjoyable to me if I'm in pain after. I keep hoping it will resolve but sometimes I wonder why they haven't done a ultrasound to see if its inflamation or scar tissue and does it even really matter between the two. I also wonder if it could be something else. I went to brazil a month before the onset of this which I mentioned to the doctors but they didn't seem to care.

chefcasey

I'm surprised that they did not give you an ultrasound at Johns Hopkins.  Even my local uro(who wasn't very good) gave one to me just to make sure there wasn't any serious damage done.  Basically, they scan the wand over your flaccid penis in all directions and take pictures, if they want to check your blood flow and erectile function, then they also perform one erect.  The technician let me look at the screen and showed me where my scar tissue was.  It shows up as little breaks in the tunica, where it should be flat, so it expands like an accordion instead of a balloon and thus we get the dents, or curve

rd

Yeah well the guy at john hopkins was a joke. I waited 3 months for my appointment another 2-3 hours in the waiting room. Just to walk in and have him not even examin me and say well from what you described it sounds like peyronies. Your local uro got it right. He wasn't even going to examine me. I told him I waited this long and would like him to confirm it. So he examined me for 30 seconds and confirmed and told me nothing has been proven to treat it so I won't give you a rx for anything and the pain should go away eventually. I might request a ultra sound when i got in for a follow up with my local uro next month.

chefcasey

There was probably no worse day in my life, than when I had waited a month to see my first urologist, only to hear the words "You have Peyronies Disease, and there's nothing we can do about it".  Then I asked him, "does it ever go away on it's own?"  As I watched his eyes shift back and forth, he replied "Uh yea, it can change over time".  My only hope is that one day I'll be all better and I can laugh about days like that, oh well.

Worried Guy

Hardly any pain at the weekend and now it is really aching whilst flaccid.  What's with this?  I've had to take 4 ibuprofen today.  My plaque feels bigger and harder also.  I am starting to lose hope with this.  I spent tonight looking at penile implants because I can't see light at the end of the tunnel and want to know everything there is to know.  I know my situation is not that bad but this dent keeps getting bigger and with the pain like it is I can only see this going in the wrong direction.

chefcasey

I had the same problem for some time.  I would feel good for a while and then all of a sudden, bam....back to the hardened, inflexible, painful flaccid.  It does get better though.  It took about 6 months for me, and stopping all the ved or traction stuff, as well as cutting back on the loads and loads of pills I was taking.  I thought if I stacked every treatment known to man, that I would have a better chance at beating it, but I was wrong.  All it did was give me diarrhea and a thin wallet.  I've just kept it simple since, pentox and arginine and that's it, just like Dr. Levine told me.  I'm a little skeptical about stacking all these treatments, since none of them have been tested synergistically, so I don't know if they could possibly interfere with each other.  This is something Dr. Lue has said, and it's why he only suggests pentox and nothing else.

But don't go thinking that an implant is going to make you better off...As much as this thing sucks right now, I would still take a little curve and some annoying pain over having to use a pump in my nutsack to get an erection lol.  I used to never see light at the end of the tunnel, I still truly don't, but this thing has stabilized for me finally, and at least I no longer feel doomed anymore.  This thing will stabilize, especially since you're young and it's not that bad.  In a year or so, if xiaflex is approved, that's really the route I want to try, something that eats away the plaque.  I'm only 27 and I think you're about the same age, so I'm fully prepared to suffer with a crappy  sex life for ages 27-28 if everything age 29 and after is good.

Worried Guy

After getting pretty depressed yesterday with pain I've had my best day in 4 months today.  I can't really understand it!  I woke up this morning and could not feel a thing.  Thought to myself that the pain would start in a few hours after working.  (I'm a surveyor so spend lots of the day walking around building sites etc) I think the movement of walking does not help.  The pain never materialised and I've been pain free all day.  Fingers crossed that tomorrow will be the same.  I just don't understand it at all.  Got myself 6 weeks worth of pentox today so will carry on the same route.  I have my VED appointment a week today so we will see what that brings.  People say differing things on here about when to start.  Some say wait for things to heal whilst others say start now to stop progression.   :'(

Chef, I cut out Vit E and ALC and am now just taking petox, l arginine and Coq10.  It was a financial choice as well as the fact i was taking so many tablets.

I don't think that an implant is a cure and I'm far from needing one at the moment but you must have gone over it in your head?  Lets say my dent gets worse (nobody can tell how this will pan out) and I keep thinking about the worse case scenario.  It is hard not to when the uro can't really tell you anything either way.  I've still got so far to go with this if you believe the 12-18 month timescale. So the dent gets bigger and I end up with a buckle or hinge.  I then have to have the Lue procedure or something similar.  The surgeon will tell you before you have this op that you may end up with ED after.  So you end up with ED and the only choice is an implant at 30.  The implant will last 15 or so years and then you have to have another operation.  I'm sorry for being down about it but is really hard to be positive and I keep going over it in my head.  

Xiaflex is a hope of mine but don't you have dents also?  They don't offer it to people with hour glass deformities.  I've tried to ask people about the chance of Xiaflex making girth worse but got told not to post stuff like that because people don't want to hear that stuff.  I was asking an honest question but nobody wants to tell me or they just don't honestly know.  I guess that is why it is a trial.  Perhaps the uro's don't even know!

chefcasey

I did go over what an implant would be like, and realized that the consequences would be far greater than what I currently live with.  I realized that unless you have ED and a curvature so bad as to not be able to have sex, that no one would even perform implant surgery in the first place.  Once someone ops for surgery, that is the last stand, there's no going back after that.  I would just not even think about it unless all other options have been tried and exhausted.  I personally believe that one should stabilize before using anything like ved or traction.  My reasoning is just my personal experience, being that I tried them, and believe me I took it slow and cautiously, but it did not get better or stabilize, in fact it hurt worse.  That being said, I'll probably wait another month or so just to be sure the inflammation is gone and then maybe try ved again to gain back what I've lost.

As far as xiaflex goes, they don't offer it for guys with hourglass deformity in the study, but not because it doesn't work, but because theirs no way to measure improvement.  Remember, this company's goal is to pass this drug through the FDA, therefore, they're going to use the simplest and easiest criteria possible to get the best results, meaning curvature improvement.  Hourglass deformity, curvature, and dents are ALL caused by the same thing, scar tissue  in the tunica.  A dent is caused by scar tissue in one spot but not severe enough to cause a curve, if it were, it wouldn't be able to stretch at all and that's what causes the curve.  Hourglass deformity is just scar tissue on 2 or more sides.  What I'm trying to say though is that the principle is the same.  Xiaflex breaks down collagen fibers in scar tissue, whatever form that may come in, so as long as it passes the trial, I'm pretty sure urologists will offer it for everything.  As far as it making girth worse...I think you might be confused.  The risk is that it can make the lining of your tunica thinner, not necessarily your penis thinner. What determines your penis girth is the erectile tissue's ability to expand the tunica.  If the tunica becomes thinner, your erectile chambers will still expand the same, except the tunica takes the risk of not being as strong. That is a risk if it is injected into healthy tissue instead of scar tissue.  However, its very small and no one so far has reported anything like it.  I hope this helps a little

ronners


crashbandit

Quote from: chefcasey on April 26, 2011, 07:42:50 PM
I had the same problem for some time.  I would feel good for a while and then all of a sudden, bam....back to the hardened, inflexible, painful flaccid.  It does get better though.  It took about 6 months for me, and stopping all the ved or traction stuff, as well as cutting back on the loads and loads of pills I was taking.  I thought if I stacked every treatment known to man, that I would have a better chance at beating it, but I was wrong.  All it did was give me diarrhea and a thin wallet.  I've just kept it simple since, pentox and arginine and that's it, just like Dr. Levine told me.  I'm a little skeptical about stacking all these treatments, since none of them have been tested synergistically, so I don't know if they could possibly interfere with each other.  This is something Dr. Lue has said, and it's why he only suggests pentox and nothing else.

I agree, the simpler the treatment, the better. Too many pills is not the way to go.

Have you thought about taking cialis chef? I'd try adding some Astaxanthin for the pain too. I think I'm finding some help with 6mg a day of astaxanthin. I take pentox, astaxanthin and fish oil all three times a day together. Then low-dose cialis every 48 hours. I wouldn't want to add anymore then then and if I did, I'll drop something. The only thing that has remained consistant with my regime is the fish oil and pentox.

Quote from: chefcasey on April 26, 2011, 07:42:50 PM
But don't go thinking that an implant is going to make you better off...As much as this thing sucks right now, I would still take a little curve and some annoying pain over having to use a pump in my nutsack to get an erection lol.  

No offence to the pumpers out there but I couldn't stop laughing for about 5 minutes after reading that, lol.

Cheers

Worried Guy

Guys, firstly collegense breaks down collagen and not other tissue.  If you remove the scar what is left in its place is what I'm suggesting.  That is why the tunica could be thinner right.  The scar is part of the tunica now and once gone what takes its place?  Does the scar tissue revert back to normal tissue once the collagen is dissolved? Possible but I don't see how.  So there is nothing in place of the scar causing a thinning.  This is what Lue suggested in his video.  If too much scar tissue is dissolved!!!  It would be like doing an incision and grafting operation with just the incising and not bothering to place a graft.

I wish I could laugh but I actually feel like crying.  I'm crapping myself and I know you probably are also.  If we are like this at this age what are we going to be like in 20 years?  I don't want a pump and this would be my last choice but if you develop ED, which I'm worried about, it probably is your only choice.  Unless you want to inject yourself in the dick and end up with worse peyronies than before.  I don't have ED and yes I'm not that bad at the moment but the not knowing how this is going to develop is causing me some distress.

chefcasey

Crash:

I have seen the cialis study and it does look appealing, but after talking to Levine's nurse, they decided it wasn't necessary and weren't really convinced that it had the resolution effect that it seemed to show in the one study.  I truly believe that I am stable now as the pain and progression has stopped.  I did however get a script from Levine for celebrex and that works great for pain for me even though I don't need it anymore.  I'm not yet satisfied because I haven't had any reversal yet, but I feel much safer now.  I am watching closely the posts on guys taking cialis and the guys doubling their doses of pentox via Dr. Lue.  If I hear any good news I'll discuss it with Levine when I see him again in July,

p.s.  It wasn't my intention to be comical about the implant thing, but I do feel like others and myself included get so frustrated with this disease that we forget how much worse it can be and my point was to highlight the absurdity of thinking the implant route if everything still works down there.  I took my penis before Peyronies Disease for granted and I still do in some ways like the ability to get an erection, have sex, ejaculate, urinate without any trouble.  There really are many guys on here who cannot get an erection, so I do try and think more in perspective.

Worriedguy:

You are right, it does target collagen, but as I understand it, it doesn't discriminate between good collagen in your healthy tissue and "bad" collagen from the scar.  If it dissolves the bad collagen, then elastin is left over. Now does the body generate new cells and create new "good" collagen afterwards?  I'm not quite sure about this.  There are some very technical writings out there, but I'm not a doctor and don't understand a great deal of it.  I don't entirely understand how verapamil works either, but just from reading replies on the board, xiaflex seems to be much safer than that.  I know there aren't a lot of good studies on Peyronies Disease treatments, but looking at the trials being conducted right now, it actually looks like one of the best conducted studies for a treatment I've seen yet.  Nevertheless, there is still another 9 months or so left in the study I think, so hopefully we'll know more by then.

On the ED note...You need to get a duplex ultrasound performed to check if your veins are closing properly and bloodflow is normal.  I was terrified of this before as you were, only to find out once I got the ultrasound that not only was everything working properly, but I had some of the best penile bloodflow the doctor had ever seen!  Once you get that out of the way, that should ease some of your fears.  If everything is working fine, then you cannot get ED unless you somehow injure things much worse.


cs65

Peyronie's for 4 years now with persistent pain when flaccid.  Also too much pain to have intercourse.  No curvature. Been to two doctors at Johns Hopkins and I agree they were both worthless.  Said to wait it out, and that surgery is only performed in cases of curvature.  At this point, I've given up hope of having intercourse again.  I just wish I could find something to help with the flaccid pain, as it's very debilitating.

fubar

Cs65

Have you tried any of the remedy on this forum.I ask this only because you regesterd in 2007.Many things are helpful to some.Are you preforming any therapy recommended by those on this forum? If you are doing nothing I would strongly recommend you make a decision and try.

Fubar  

Worried Guy

Now 4 days pain free.  No pain whilst flaccid or erect just a small amount when examining plaque. I managed to wear jeans all day without any  problems so does this mean I am entering the chronic stage?  What should I expect from the next 6 months?  A worsening of curvature?  Onset of weaker erections?  

Worried Guy

cs65.  That really sucks about the pain.  It is stupid to say you have to wait it out for 4 years!  Have you thought that it could be nerve damage?

newguy

Quote from: cs65 on April 29, 2011, 11:09:06 PM
Peyronie's for 4 years now with persistent pain when flaccid.  Also too much pain to have intercourse.  No curvature. Been to two doctors at Johns Hopkins and I agree they were both worthless.  Said to wait it out, and that surgery is only performed in cases of curvature.  At this point, I've given up hope of having intercourse again.  I just wish I could find something to help with the flaccid pain, as it's very debilitating.

I think it was Levine who said that sometimes those suffring for pain for years possibly have some kind of nerve damage. It might not be peyronie's pain as such. Maybe there are nerve pain medications that you could try? I mean, since curvature hasn't changed in all this time, it does make me wonder if someone else is the cause.

cs65

Thanks for the suggestions and the support.  I've tried many of the oral therapies mentioned on the site for several years now - potaba, vitamin e, gingko, l-arginine, alc, colchicine, tamoxifen.  I've been on pentox for two years now with no improvement.  I attempted ved therapy a couple of times.  While there was no pain during the ved sessions, I had severe pain for a few days afterward, so I did not continue.  Never tried verapamil injections.

Flying to Chicago to see Dr. Levine later this month.  We'll see what he says.

Woodman

cs65- I too have had Peyronies for 4 years now with constant pain from very bad to constantly irritating. It completely has a mind of its own. I ve tryed a lot of things suggested and stuff on my own. There were times I couldn't wear pants or jeans sometimes I would have to just wear lose shorts with no underwear. In the begining I didn't wear jeans or pants for about 8 months for a while I had to walk bow legged.

I too have the same problem with the VED use it for a few days then have pain for several days afterwards. When I was active I would hurt for one to three days after I used it. I could only use it once in about 2 to 3 days then I would pay the pain price. It really was a bummer.

Right now its real bad for some reason I don't know why usually it would happen from useage or trying the VED etc. I am with you I just want the pain to stop. Four years is a long time, sometimes I have to think really hard to remember normal.

Things that helped me along the way is Celebrex its helped me the most. I had to quit taking it for a week cause I got sick. I think by stopping it it made the pain kickin it was working pretty well before hand. Also taking ALC, L Arginine & CoQ10. The Coq10 and the celebrex seem to work pretty good if you stay on them on a constant basis. I sleep on my back if I don't I sleep with a pillow between my legs to keep my weight off my crouch. It may sound funny but falling asleep on it all night and especally getting night time erections make the pain worse!  I sleep in loose shorts with no underwear pressure on it and no room for expansion hurt it too! I know it sounds funny but I ve tryed soo many things and adjustments to try making the pain improve. When its real bad too I sit in a hot tub and it helps also used an ice pack just depending on how it feels.

Hope this might help a bit sorry for it being long winded. Just seen you were in the same boat as I am and wanted to let you know another person is rowing the same boat.

Please let us know what Dr. Levine tells you about the pain. I went to see him in August of 2009 and I didn't get much from him. He kinda skirted me on the subject. He did tell me that the pain could still be there and even get worse if I had surgery.

Best of luck with your visit to Chicago.


George999

For you guys that are dealing with long term pain, I have to question as to where all that inflammation is coming from.  This is a question I had to ask myself.  Here we are taking boatloads of anti-inflammatories to no avail.  What is going on?  I came to really two conclusions.  1)  Vitamin D is the MASTER anti-inflammatory component in the body.  If vitamin D blood levels are too low, that can be part of the problem.  Healthy vitamin D blood levels should be in the neighborhood of 50ng/ml.  2) The two most powerful inflammatory substances in the body are are serum glucose and serum insulin.  I had mine checked and my serum insulin was fine BUT my serum glucose is way to high.  Fasting serum insulin should be no more than 5uUI/mL.   Fasting serum glucose should be no more than around 86mg/dL, the lower the better.  Mine was 103mg/dL, way too high.  I am now working to get that down and am seeing benefit with my Peyronie's issues.  I am now off of Pentoxifylline which I stopped to deal with other issues, but I am having zero pain and zero regression.  I have also been able to discontinue one of my two blood pressure medications with no rebound in blood pressure and my blood pressure remains within healthy limits and is declining.  So these are factors that you might get a lot of mileage out of if you take the time to consider them carefully.  - George

Woodman

George you bring up a very interesting idea. I ve been thinking for a little while now to go to my primary physician and ask him if theres something he could test for to try and find out why Iam having such a problem with all the inflammation. I am 38 yrs old and since July of 2007 I got Peyronies, August of 2007 found out I had Achalasia & September of 2009 got Carpal Tunnel in both hands pretty bad too. I do not know for sure if any or all of these factor into one another but it all happened in a short period of time and I ve never been the same since. In July of 2008 I had to have a Heller myotomy for the Achalasia.

Can my regular MD have the blood test done to check all of my vitamin D levels? Also, can you suggest any other test or medicines etc. that I could bring up to my doctor that might help? I am really lost and not super well versed in the ins and outs of the inflammatory process and the root causes of it. I do understand it in layman's terms.

Thanks for bring the subject up and for your input.

George999

Your primary physician can check all of these if you can convince him or her to do it.  I see the three following as being crucial in terms of controlling inflammation.

1)  Vitamin D - at least 50ng/ml min  (see http://www.grassrootshealth.net for more info)

2)  Insulin - no more than 5uUI/mL max

3)  Fasting Glucose - no more than 86mg/dL max (there was a recent study that discovered that an extreme low carb diet could actually CURE end stage kidney disease in lab rodents, imagine that!)

I have no doubt that getting these levels right can make us healthier.  The problem in the past on the serum glucose side has been that radical diets like Atkins have created as many problems as they solve been inducing people to eat far too much protein which carries its own health dangers.  The solution is to keep a balance of carbs/fats/proteins by increasing FIBER.  Konjac fiber is very very useful in this regard.  There are two major suppliers for konjac.  They are konjacfoods.com and miraclenoodle.com.  Guys your age should NOT be struggling with inflammation to this degree.  Even guys my age (60s) should not have these kinds of problems with inflammation.  The problem is, I believe, linked to the massive amounts of refined carbs that have become the cornerstone of our diet.  - George

SSmithe

George,
Thanks for posting your thoughts about refined carbs.  I too have been looking into that as a reason for excessive inflammation.  I have been trying to reduce my gluten intake and while I cant yet tell its effect on my peyronies, my overall energy levels are more consistent and I feel less sleepy yet still full after meals.  
Im going to try to cut almost all refined flours and sugars for a month to see how I feel.  Will keep you posted when I do it.
SSmithe
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

George999

SSmithe,  I would encourage you to look at the konjac product.  It has been very helpful in filling me up without adding a single calorie to my diet.  I am using it for my evening meal and it really easily cuts total calories in half while leaving me feeling fuller than ever.  I have been using the "made in China" product from Konjac Foods, but my wife just tried the slightly more expensive USA made Miracle Noodle product and likes it better.  They both contain the same active ingredient and should both work equally well.  - George

rd

This is interesting, I started to cut them as well. I had always complained to my doctor of being tired and having no energy all the time. I work out a lot and even took 3 weeks off and still felt tired. I couldn't concentrate well and could never remember anything. I eat a ton too to keep on weight because my metabolism is crazy fast. I walk around at 3.9 percent body fat even when eating junk foods. I've been cutting the carbs and eating more fatty cuts of meat, since this was mentioned on here not to long ago. I already feel a little better in the short time I have been doing this, and my memory seems to be a bit sharper as well. I still eat a ton but do feel a bit fuller after consuming more of the fatter foods and less carbs.

SSmithe

George,
I will look into that Konjac project, thanks. I find it difficult to get full when avoiding the carbs and sugars, but when I do I feel better.

RD,
I have a similar situation as you.  I could eat like a horse and still not put on a single pound as I too have a zooming metabolism.  How it relates to Peyronies im not sure, but I am leaning toward a metabolic / inflammation cause as I know I am already in a unique situation regarding my metabolism.  

Thanks for the input,
SSmithe

 
32 years old.  Peyronies since 22. Stabilized peyronies plaque.  ED.  Trying to stay positive.

George999

I would add here that I think it is important to know your numbers on glucose and insulin.  If your insulin and glucose numbers are low, then this is not where your problem lies and you could be wasting your time and money in attacking them.  Its like vitamin D, the only way to really know is to know where your numbers are and to go from there.  - George

Worried Guy

Pain has officially stopped.  I guess i'm following the text book pattern.  Will my curvature progress in the next 6 months?  This could be a long year!!!

Farinthesouth

Quote from: Worried Guy on June 02, 2011, 11:47:41 AM
Pain has officially stopped.  I guess i'm following the text book pattern.  Will my curvature progress in the next 6 months?  This could be a long year!!!

Excellent notice !!! Congratulations. I´m still on pain in flaccid penis after 2 years. I do know what you felt.


George999

Quote from: Worried Guy on June 02, 2011, 11:47:41 AM
Pain has officially stopped.  I guess i'm following the text book pattern.  Will my curvature progress in the next 6 months?  This could be a long year!!!

Nobody knows at this point.  The best thing you can do is stay the course with the Pentox and the CoQ10 as they will help to avert progression.  - George

newguy

Quote from: Worried Guy on June 02, 2011, 11:47:41 AM
Pain has officially stopped.  I guess i'm following the text book pattern.  Will my curvature progress in the next 6 months?  This could be a long year!!!

Really happy for you. Stay on the oral treatments though. Pain can sometimes ebb and flow. Also, be sure to stay on oral treatments throughout the healing progress - for instance, if its deemed as an average that healing can take a year+, I would personally say that staying on oral treatments for that entirely time is a very good idea.  

whattodo

I also had pain (still have sometimes) in the flaccid state, but my uro (Mulhall) said it was probably chronic pelvic pain disorder or some nerve issue. I did have a varicocele surgery at some point and have some stress/anxiety issues. However, I noticed that if I make a conscious effort to relax and tune out the pain, I can make the pain subside, and things loosen up a bit down there. Not saying this will be the case for everyone, but worth a shot.

There are two variants of CPPD, as far as I'm aware. One is an actual bacterial infection; the other is due to unknown causes. One of the possible symptoms is a burning sensation in your member, which I used to confuse with Peyronie's inflammation.

Bandit

Hi,

I also have pain when my penis is flaccid much like you guys.   I dont have any pain during erections, only when I am flaccid.   My sex life has pretty much been put on hold.  If I do have sex I pay a price.  Sometimes I get inflamed and stay inflamed for months.  It can be very painful.   So I feel your pain.   Im just hoping that at some point I can get this pain to go away.  

I went to Dr. Lue, and have been going to see him for the last year.   I had a fractured penis repaired.  There was then some scar tissue and a bit of plaque that developed.    I have a very small curvature with the plaque.  

Dr. Lue believes that my pain is due to the scar tissue rubbing against nerves in my penis.   He has been treating me with small doses of corticosteroids to help flatten the scar tissue and to help stop the pain.   He says that in 90% of his patients he is able to get the pain to go way forever with this treatment.   So far it has helped sometimes and made it worse others.   For about 6 months or so he really did get it to go away.    But it might be something worth looking into for you guys.   Other urologist I talked to said it will hopefully just go away.  Which somehow I doubt.  So far Dr. Lue has been a great doctor.   He sometimes is very very busy when you go in to see him, and other times he doesnt seem to have much time to explain his mind.   But as far as my condition goes I dont think there is another doctor i would trust.   Not to mention he is just a great guy.

From what Ive read if the pain goes for a long time, as it has for me, it can often times be a nerve condition.  

One last thing, I tried out dr. Herazy's peyronies treatment when I first started to go through this on the peyronies disease help website.   I only tried the products for about maybe 3 months, and honestly they did help with the pain.  I think the nattokinase did a great job of thinning my blood.  And i think a lot of time this pain or nerve damage is from lack of blood flow and hypoxia to the nerve due to the scar tissue.  

Anyways thanks for all the great information guys I appreciate it.

Woodman

Wow Banned, thats very interesting Dr. Lues pain treatment. Please keep us updated with your results from it. If there was a way to turn off the pain it would really change the quality of our lifes for us who have long term constant pain issues.

George999

Just so amazing how Dr Lue seems to stay out ahead of the pack on all this stuff.  He is certainly a huge asset to our Peyronie's community.  - George

Fredca

Just wondering if the flaccid penis pain is also related to how it looks like? I still have sometimes what I would call a unflexible flaccid penis, its not soft but hardened some way even when flaccid. Mostly but not always this goes accompanied with swelling of the testicles as well.
When your pain went away Worried guy, was this also shown by the penis getting more 'soft' in the flaccid state so to say?

This is the biggest problem I still have with the disease, the constant fear of it returning and have inflammation again and not be so lucky this time. The random occurance of swelling unflexible flaccid thing isnt helping and feels very wrong.  

CaptainCrooked

Hi there,
My pain is also worse when flaccid. When pain is most intense, spidery veins on top of penis are prominent and redness exists where pain is most noticeable. It could be that I have Mondor's disease as well...
Ice seems to help at times...
Although I don't recommend it to anyone on this forum, I have felt the most relief while on Adderall or LSD (even the day after). It might have something to do with dopamine levels. Decreased levels of dopamine have been associated with painful symptoms connected to neurological conditions. It could be that some of us have damaged nerves. I thought I should share as I know how terrible it is to go day in and day out without any relief. I have been suffering for well over a year now and have shifted to a celibate lifestyle, which seems to be helping psychologically.
Anyway, Love and Light to everyone. I wish you all the very best!

McChicken94

I hate to agree with helpme... :( Cause yeah, I have been on testosterone, cialis, pentox, L-citrulline, tried VED (MADE ME WORSE!!), got shredded, currently trying a peptide called TB500 and still hopefull it helps cause it promotes overall healing, bloodvessel development, seems to help people get rid of chronic nagging injuries after a short cycle, so yeah it basically gives you super healing properties for a while. If it doesn't stop the constant progression and inflammation in my penis IDK what else I'll do. Probably try more peptides, maybe even human growth hormone. If it doesn't help my dck I will at least improve even more athletically and benefit from a couple weeks of super fast recovery. That said, deep down I just hope my dck will heal. But no, nobody can tell you it will ever end and despite what the literature says I now know A LOT of guys get worse way after the 2 year mark where everything is supposed to be stabilized. In my opinion if the damage is severe enough it will forever remain a weak point waiting to get damaged again.
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