Peyronies Society Forums

I remember a thread on here from a while back, where someone mentioned that Dr Levine had stated that he could/should consider going ahead with surgery , despite being in pain. The pain had been ongoing for quite some time, and Levine considered, accorder to the poster, that this might be down to nerve damage rather than a bout of peyronie's.

Looking through the My History thread is occured to me that really it's not unheard of, or even dramatically uncommon for people to have pain issues for 1,2 years + because deformity sets in. Do you feel that this subset of sufferers is not really (or fully) recognised by the top peyronie's surgeons?

I think it may have been George999. Not positive though, but I too remember the post. One of the other posters said he had chronic pain over 2 or 3 years. Maybe it does have something to do with plaque pressing on the nerves.

Has anyone ever experienced pain with the scar tissue when it contracts?

In my case, the pain was due to inflammation, which has since virtually disappeared through a variety of treatments including prednisone, alleve, and finally pentox.

newguy

This is a copy and paste from my one year post op visit with Dr. Milam.

I asked about pain with peyronies for another gentleman. He has been having pain with erections and other urinary symptoms. They know Dr. Levine and his work. They disagree with not doing any surgery for peyronies if you have pain.  They did not get specific as to what they prescribe for pain only different men have different symptoms and they prescribe different things, and they also occasionally recommend surgery for the pain.  They also recommended a second opinion on the urinary symptoms and said they would be glad to help him with that

Jackp

I believe you guys are referring to my post from last year in reguards to chronic pain and Dr. Levines thoughts. I ve pretty much have had constant and chronic pain from my Peyronies for two and a half years now. I ve experienced pain since my first bout of Peyronies in July 07.

When I asked him about the pain and what might be causing it inflammation and or just pain from the plaques being there, He ansewered me in kinda a diagnostic fashion of well it maybe nerve pain or something else. When he got to explaining what he offered me in the terms of surgical correcton IE plication in two or more places. He said that I was outside the 6-18 month stabilization window so he said my Peyronies should be stable and that it would be ok to do the procedure if I wanted with the pain.

I asked him about the pain if I had surgery. He said it would still be there and it could even get worse afterwards if I had the surgery.

I ve had pain from the scar tissue contracting. It makes one side of my penis very tight. It kinda feels like a pulled muscle with a dull to burning ache. I ve been taking Celebrex for about a month now to help with the pain over all it has helped with it.

I do not think that most of the Uros really recognize the pain aspect thats gos along with the condition in my experience. I had to really press for the celebrex from my Uro and hes pretty well versed in the Peyronies Disease field.

Jackp-  "They did not get specific as to what they prescribe for pain only different men have different symptoms and they prescribe different things"  This is the first time I ve ever heard a doctor come out and say they do treat there patents for the pain assiocated with there Peyronies. Most doctors skate around the subject.

From all that I ve heard and read about Dr. Milam he sounds like a doc with a real heart that takes time with his patents. I hope I can speak to him soon I think he might have my ansewers I need.

Sorry if I went off topic a little bit.

Woodman

woodman - have you tried pentox??

ALC got rid of the pain for me until I could not take it anymore.  Soon as I stopped taking ALC the nasty pain came back.  I ended up in desperation for Pentox and my uro agreed to refer me to Dr Lue.  After an 8 hr bus ride, I saw Dr Lue and had a prescription for Pentox.  Pentox killed the pain in no time and it has never come back since.  - George

Quote from: Woodman on January 18, 2010, 12:05:32 AM
I believe you guys are referring to my post from last year in reguards to chronic pain and Dr. Levines thoughts. I ve pretty much have had constant and chronic pain from my Peyronies for two and a half years now. I ve experienced pain since my first bout of Peyronies in July 07.

When I asked him about the pain and what might be causing it inflammation and or just pain from the plaques being there, He ansewered me in kinda a diagnostic fashion of well it maybe nerve pain or something else. When he got to explaining what he offered me in the terms of surgical correcton IE plication in two or more places. He said that I was outside the 6-18 month stabilization window so he said my Peyronies should be stable and that it would be ok to do the procedure if I wanted with the pain.

I asked him about the pain if I had surgery. He said it would still be there and it could even get worse afterwards if I had the surgery.

Sorry if I went off topic a little bit.

Woodman

Not off topic at all Woodman. I'm in a similiar position. On one hand there's the positive, that my curve is not as bad as it used to be (through a combination of treatments, though I believe that long term Pentox use is the primary reason), on the other an injury caused during this prcocess of attempting to improve my condition (during traction), still appears to have not completely gone away. It's coming up to two years since this happens, and I still go around with a bit of a dark cloud looming over me, thinking that this could be an ongoing and damaging problem that may put me right back to square one. I really have been pleasantly surprised that pentox use and regular erection, even in recent months appears to have resulted in noticable improvements in curvature (even recently). Don't get me wrong, it's still not ideal, but it's now borderline acceptable. This pain is an ongoing concern though. It's no longer 'very' painful, but it is there, and always in the same area. By taking pentox I'm sure that if there are negative consequences I'm doing all I can, but i'm a bit uneasy about the situation.

It concerns me that at the top urologists don't seem to have an answer for this. Their view doesn't quite tally with the experiences of men as detailed in the Our Histories section.

Having had Peyronies Disease for three years .I have seen two urologists. One incompassionate SOB,just said "no cure,your depression in normal,deal with it" and left. The second was more compassionate but said Peyronies Disease was beyond
his expertise and recommended I see a specialist.Problem is here in SoCal the so-called specialists want hundreds just for a consultation and thousands to treat. To compound the matter is being unemployed and
losing my income and insurance and doctors. I have been taking acetyl-l carnitine and L arginine, 2-3 grams per day with no improved. Worse besides incapable to have sex with my wife for three years because of the pain, which wakes me each night from the nocturnal erection, I have to take Vicodin each night for the pain.
Motrin,Advil doesn't work and have become dependent on the Vicodin(I get the Vicodin my sister-in law MD in a foreign country :'().
She also gave me anti-depressants that have eased the suicidal ideation. Still unemployed, tough to find work in my late 50's. Life can be cruel. Anyone else have a solution for nightly pain besides opioids?
Thanks

What concerns me is that you still have pain after three years, assuming you do have peyronie's. My suggestion is that if your insurance coverage is still valid, go get a penile doppler ultrasound. This will detect the problem and can give you solutions. Normally the pain subsides after 12-18 months, though other people do experience pain for longer.

Erections are a good thing, so you need to keep them coming. Unfortunately, most anti depressents are erection killers.

Pentox is a relatively inexpensive monthly prescription. You might want to visit a urologist who can prescribe pentox. L-arginine supplements at the drug store cost $4.00 for 50 pills. At 4 a day that lasts almost two weeks.

Hang in there let us know if you have further questions.

I've really benefited from the info on this site and would like to share my progress (or lack of!)

I've had a curve (30 degree or so to the left) for as long as I can remember, I'm 44. Thankfully it was never an issue as far as functionality. My partners may have thought it was a little off to the left but they never said anything and sex was always great.

That was until about 14 months ago when I felt a small lump just below the head of my penis when erect. No pain and everything was working as normal. Then one night I woke up with what felt like a bruise on the right side of my penis (when erect). I figured I'd bust a blood vessel and it would heal up. The next few days/weeks I noticed that the pain was present even when I wasn't erect. I left it alone for maybe a month and then one night the pain seemed to move to the same spot where the lump had been. I was the kind of pain where you hard a hard time falling asleep. Finally I went to see my PC Doc, he scratched his head, thought it was a bust blood vessel.

A month or so later the pain had not subsided in fact it had got much worse so I went to see a Uro. Again no idea what it was, back to the PC Doc who advised a second Uro opinion. Ended up at the local teaching hospital's Uro dept where after an initial visit I got a doppler scan which showed that there was indeed plaque. (this is maybe 6 months or so after the onset of pain). The advice was VitE and come back and us if it doesn't improve. I went back for a follow up a couple of month later and the pain was reduced but still very much present. The decision was to hold off on V injections as the Doc wasn't 100% sure it was Peyronies as I'd had the curve most of my life.

So its 14 months since the onset. I just started taking Pentox and L-Arg along with the Vit E. Pain is still there almost all the time but its maybe down to a 2 from the high of 9/10 from a year ago. Its much worse when I'm sitting vs standing, and exercising isn't as much fun as it used to be. I can still have sex but the urge to do it isn't as strong when you are dealing with a constant discomfort. However, I'm lucky in that when I do have an erection the pain is hardly noticeable...

My plan is to give the Pentox 3-6 months and if the pain is still there back to the Uro. (A new one as I'm moving to NYC) and we'll try the V injections.

I guess I'm really lucky that the bend doesn't seem to have got any worse (there maybe a slight twist now? and there is definitely some narrowing of the last inch of my penis when flacid. But when erect its about the same as it was for before. For me this is all about pain management so here's hoping that as time goes on Pentox will help and that will subside.

Only advise I can give is that if you have gone from 0 to 30degrees with no pain and that's it, don't worry about what your partner may be thinking I NEVER had any complaints!

Best of luck to all my fellow PDers!

Quote from: elysianfields on March 04, 2010, 01:37:17 PM

Only advise I can give is that if you have gone from 0 to 30degrees with no pain and that's it, don't worry about what your partner may be thinking I NEVER had any complaints!

Thanks for your perspective, I'm sure it will help many on the forum.

Welcome to the forum elysianfields. I like the optimistic/realistic tone of your message. May I ask, does your pain get worse when you engage in sexual activity, or does that not appear to impact your Peyronies Disease?

If I can make one suggestion, it is to not view Pentox as such a short term treatment. The pentox studies in totality  (in relation to Peyronies Disease and other conditions) suggest to me that setting the minimum time to take it to a year wouldn't be a bad move. 

Thanks newguy. Point taken on the Pentox. I'll keep going with it until the pain subsides. I'm buying it via mail order from Canada, which makes it a very affordable option.

As fas a sexual performance:
Months 1 and 2 it was more of an annoyance. The pain was like having a small bruise maybe an inch around on the right side of my penis. Provided I didn't apply pressure there everything was ok. Oddly I remember the pain was always worse when I was in a stressful situation, that really made it hard at work.

Months 3-4 it got much worse in terms of pain and sensitivity. Wearing bike short and close fitting underwear was painful, as such my sex life became less of a priority (I'm single). The pain seemed to move to a smaller location on the top of the shaft at the sulcus. My penis was very sensitive to movement which created pain. Maybe an 8/10? Erections were still not a problem but the pain would be there at that location.There would still be the odd day or 2 where I'd think the pain was gone, only to reappear. Sex (infrequent as it was) was still ok, the pain wasn't too noticeable during sex, but it came back afterwards and yes maybe it was more intense? I can remember it was at times hard to fall asleep afterwards as it was sensitive.

Months 5-today. Pain is mostly when I'm sitting. When I get an erection the pain is much less noticeable. So for me its a case of trying to ignore the pain until erection. Its hard to compare to how things were 6 months ago but they aren't any worse and maybe its slightly better at times ?!?

During this time I've had 2 relationships. Didn't tell either of them what was going on as there really wasn't anything that they could do to help.. other than have sex with me so I could see if things were better/worse?!?

Again I do consider myself to be "lucky", I'm just dealing with annoying pain. My penis is still working, it feels good when I have sex and as stated 30degrees has never been a problem for anyone I've been with, in fact with the right position I think it can even be a plus!

I've spent some time on reading all the helpful posts here and for me it would be good if there was a "pain management" section, I'm not interested in having a straight penis, it served me well enough for 44 years the way it is!

Quote from: elysianfields on March 06, 2010, 11:20:30 AM
Thanks newguy. Point taken on the Pentox. I'll keep going with it until the pain subsides. I'm buying it via mail order from Canada, which makes it a very affordable option.

As fas a sexual performance:
Months 1 and 2 it was more of an annoyance. The pain was like having a small bruise maybe an inch around on the right side of my penis. Provided I didn't apply pressure there everything was ok. Oddly I remember the pain was always worse when I was in a stressful situation, that really made it hard at work.

Months 3-4 it got much worse in terms of pain and sensitivity. Wearing bike short and close fitting underwear was painful, as such my sex life became less of a priority (I'm single). The pain seemed to move to a smaller location on the top of the shaft at the sulcus. My penis was very sensitive to movement which created pain. Maybe an 8/10? Erections were still not a problem but the pain would be there at that location.There would still be the odd day or 2 where I'd think the pain was gone, only to reappear. Sex (infrequent as it was) was still ok, the pain wasn't too noticeable during sex, but it came back afterwards and yes maybe it was more intense? I can remember it was at times hard to fall asleep afterwards as it was sensitive.

Months 5-today. Pain is mostly when I'm sitting. When I get an erection the pain is much less noticeable. So for me its a case of trying to ignore the pain until erection. Its hard to compare to how things were 6 months ago but they aren't any worse and maybe its slightly better at times ?!?

During this time I've had 2 relationships. Didn't tell either of them what was going on as there really wasn't anything that they could do to help.. other than have sex with me so I could see if things were better/worse?!?

Again I do consider myself to be "lucky", I'm just dealing with annoying pain. My penis is still working, it feels good when I have sex and as stated 30degrees has never been a problem for anyone I've been with, in fact with the right position I think it can even be a plus!

I've spent some time on reading all the helpful posts here and for me it would be good if there was a "pain management" section, I'm not interested in having a straight penis, it served me well enough for 44 years the way it is!

I agree that we need a "pain management" section here. From reading many posts it seems to me that many (maybe most) experience little or no pain, but for many of us pain is the major issue.  In my case I've experienced varying degrees of pain for almost 4 years now.  I got a VED recently, but can't really get into the therapy due to pain.  All I'm taking now is Vit. E, D3, B complex, fish oil, vit. C.  I've been taking 800 mg. ibuprofen 2x per day for the last few days, but it doesn't help much.

Fred

Quote from: ducard on February 21, 2010, 02:38:53 PM
Having had Peyronies Disease for three years .I have seen two urologists. One incompassionate SOB,just said "no cure,your depression in normal,deal with it" and left. The second was more compassionate but said Peyronies Disease was beyond
his expertise and recommended I see a specialist.Problem is here in SoCal the so-called specialists want hundreds just for a consultation and thousands to treat. To compound the matter is being unemployed and
losing my income and insurance and doctors. I have been taking acetyl-l carnitine and L arginine, 2-3 grams per day with no improved. Worse besides incapable to have sex with my wife for three years because of the pain, which wakes me each night from the nocturnal erection, I have to take Vicodin each night for the pain.
Motrin,Advil doesn't work and have become dependent on the Vicodin(I get the Vicodin my sister-in law MD in a foreign country :'().
She also gave me anti-depressants that have eased the suicidal ideation. Still unemployed, tough to find work in my late 50's. Life can be cruel. Anyone else have a solution for nightly pain besides opioids?
Thanks

Ducard,

Glad to see we've started this pain management thread.  I'm basically in the same boat as you.  I do have good insurance, but doesn't help much since uros in my area are clueless.  Wish I could get Vicodin for times when the pain gets really bad.

Fred

I had missed it before I posted, but there is a new thread on pain management in this forum...right above this thread.

Fred

Thanks Fred. Read that post but I think a topic devoted to pain wouldn't be a bad idea?

Have you tried Pentox and V injections? Is the pain constant or just with erections? Mine is odd in that it subsides with erections, seems that for most its the opposite, again another reason for me to be optimistic! Hope you get a break soon... this is such a tough thing to deal with but it does make you feeel as though you can get through anything else that life throws you once you are pain free  :-\

Fredd22 - I am certainly going to contribute to the pain thread in the coming weeks. I continue to suffer some pain in relation to my second bout of peyronie's, and it impact my mindset somewhat. Hopefully there will be a day when we are all pain free.

elysianfields - The logic behind continuing pentox use, is that some sufferers experience curvature changes quite some time after the initial injury/pain. Pentox is known to stop progession in many individuals, and reverse it in some. It's important to use all tools at our disposal to combat peyronie's.

Quote from: elysianfields on March 07, 2010, 12:48:27 PM
Thanks Fred. Read that post but I think a topic devoted to pain wouldn't be a bad idea?

Have you tried Pentox and V injections? Is the pain constant or just with erections? Mine is odd in that it subsides with erections, seems that for most its the opposite, again another reason for me to be optimistic! Hope you get a break soon... this is such a tough thing to deal with but it does make you feeel as though you can get through anything else that life throws you once you are pain free  :-\

elysianfields,

I have not tried pentox only because my uro would not prescribe it.  I'm looking for someone who will.  I wouldn't do any type of injection for fear of causing further scarring (with the exception perhaps of Xiaflex if that pans out).  I almost always have some degree of pain.  Right now I'm going through a "burning" sensation episode.  I'm taking 800mg ibuprofen 2x a day and it doesn't seem to be helping at all.  Other times it's a dull ache.  I've had pain for going on 4 years and it's almost always there to some degree.  Although at times it does subside.  It just seems to have a "mind of its own".  I can be virtually pain free and shift positions and the pain will return.  My pain does not increase with erections and, in fact, does sometimes subside when erect.  It's unpredictable though.  I sometimes feel relief after ejaculation but then the pain returns afterwards.  You're right about your last statement.  I feel like I could "conquer the world" if I could just be pain free!  Feel free to PM me and I'll give you my private e-mail.

Fred

Fred22:

Just thought that I would give you a heads up on the cost of Xiaflex. Recently I saw my hand surgeon who did my Dupuytren's contractures surgery last year. He and I have been talking about Xiaflex for DC as well as Peyronies Disease.

He stated that he had been in contact with the company about using Xiaflex for his patients for DC. They quoted him a cost of in excess of $3,250.00 for one small bottle, about enough for maybe one or two injections. After adding their administrative costs to it, the cost would be over $4,000.00 for one treatment at one visit to his office.

I don't think that I am going to be a candidate for using it on my DC!!!!

Old Man

Thanks for the info Fredd22. Always good to know you are not alone!

Agree.. the pain does seem to have a mind of its own. I feel much better today, almost no pain when I'm standing. Always a chance it could be the meds finally kicking in, again we'll see. I'm really fortunate that I have a very close friend who is a Uro Dr who wrote me the prescription for Pentox without having to go back to my regular Uro Dr. You could try asking your PC Doc as Pentox is a very safe drug.

My Uro also wanted to hold off on the injections and that was maybe 4 months ago. Again I'm going to give the Pentox 3-6 months before going back for another Doppler.

And like yourself iburprofen dose not help, have you tried acetaminophen?

Quote from: Old Man on March 08, 2010, 03:38:20 PM
Fred22:

Just thought that I would give you a heads up on the cost of Xiaflex. Recently I saw my hand surgeon who did my Dupuytren's contractures surgery last year. He and I have been talking about Xiaflex for DC as well as Peyronies Disease.

He stated that he had been in contact with the company about using Xiaflex for his patients for DC. They quoted him a cost of in excess of $3,250.00 for one small bottle, about enough for maybe one or two injections. After adding their administrative costs to it, the cost would be over $4,000.00 for one treatment at one visit to his office.

I don't think that I am going to be a candidate for using it on my DC!!!!

Old Man

If it's approved by the FDA I would think insurance should eventually pay, but this might take a long time.

Fred

Quote from: elysianfields on March 08, 2010, 03:58:46 PM
Thanks for the info Fredd22. Always good to know you are not alone!

Agree.. the pain does seem to have a mind of its own. I feel much better today, almost no pain when I'm standing. Always a chance it could be the meds finally kicking in, again we'll see. I'm really fortunate that I have a very close friend who is a Uro Dr who wrote me the prescription for Pentox without having to go back to my regular Uro Dr. You could try asking your PC Doc as Pentox is a very safe drug.

My Uro also wanted to hold off on the injections and that was maybe 4 months ago. Again I'm going to give the Pentox 3-6 months before going back for another Doppler.

And like yourself iburprofen dose not help, have you tried acetaminophen?

Acetaminophen doesn't do a thing for me. Won't even knock out a mild headache.  Also it's not an anti-inflammatory and from what I've read, most think Peyronie's pain is a result of inflammation.  I'm starting to think, however, that some of mine might be neuropathic.  I'm thinking about seeing a neuro or pain management specialist.

I'm interested in this area of pain management if there is a consensus between the length or time pain occurs, and the potential for more deformity. I scanned through the 'my history' psts ages ago, and there appeared to be a few categories:

- those who woke up one morning and had experienced curvature
- those who suffered pain for a short time (a few months) and experienced curavture
- those who expeienced pain for an extended period of time (12 months +) and experienced curvature

of course that's a simplification, but I'm wondering when peple knw that they are 'out of the woods' in terms of deformity and solely have a pain issue to deal with (which does seem true, or a small subset of peyronie's sufferers). Dr Levine seems to view the 12-18 months period as the window for physical changes, telling one person beyond that that he would operate, because the pain is likely due to damaged nerves. This is quite a bold attitude really, and you'd think he'd need to be fairly sure of his conclusion, else if changes ccured months after surgery it would be a complete waste. It suggests that he doesn't see many physical changes in the many patients he see's after that period of time. Could this be due because such changes do not typically happen, or perhaps it is due to the treatment regimens he starts people on once they are his patients.

For me, pain/discomfort management is the physical issue, and the psychological issue is wondering if it is purely an issue of pain? For those of you in pain for extended periods of time (let's say beyond 18 months), do you not worry that the pain may lead onto further physical changes? For me, that is my ongoing concern.

Newguy- Yes I one that worries / concerns for having long term pain and wondering if its leading to more or long term damage. I am almost at the three year mark with Peyronies Disease with three diffrent episodes of it under my duration.

Lately, one of my major concerns is shrinkage. I have not noticed large changes in cuvature recently just in the shrinkage department. Now for the past 4 months I ve been taking celebrex and switch from the VED to the Fastsize. I had a lot of problems with pain with using the VED. I think its the plaque location of one of my scars. Iam tending to believe its thru or around a nerve.

Since I started using the celebrex " it takes a little time to kick in" and switched from the VED to the Fastsize it has helped me in the pain department considerably. Ive also noticed in creased erections that are firmer then normal or when using the VED.

The celebrex is helping me with the pain. Its not gone but its helping alot and the fast size isnt making me hurt the way the VED did in my experance. I bought the fast size cause I knew I had to try something again to fight this shrinkage issue. I wish in my experiance with pain my uro would of recommended the fastsize instead of the VED at the time I mite of had a chance to stop some progression but o well its impossable to learn everything about Peyronies Disease in your 1 st or 2 nd go at it.

I hope this mite help someone out there a little bit. My uro first prescribed me the celebrex for 30 days after I just about told him I needed something and I wasnt going to let down until he listened to me. After that I asked my MD about the long term effects etc. about it and he said its not too bad if its helping then he would write me a prescription for it. Its expensive here cause of no generic so I order it on line. They sell generic celebrex out of the US and its a lot more affordable.

Woodman

Quote from: newguy on March 10, 2010, 09:39:34 PM
I'm interested in this area of pain management if there is a consensus between the length or time pain occurs, and the potential for more deformity. I scanned through the 'my history' psts ages ago, and there appeared to be a few categories:

- those who woke up one morning and had experienced curvature
- those who suffered pain for a short time (a few months) and experienced curavture
- those who expeienced pain for an extended period of time (12 months +) and experienced curvature

of course that's a simplification, but I'm wondering when peple knw that they are 'out of the woods' in terms of deformity and solely have a pain issue to deal with (which does seem true, or a small subset of peyronie's sufferers). Dr Levine seems to view the 12-18 months period as the window for physical changes, telling one person beyond that that he would operate, because the pain is likely due to damaged nerves. This is quite a bold attitude really, and you'd think he'd need to be fairly sure of his conclusion, else if changes ccured months after surgery it would be a complete waste. It suggests that he doesn't see many physical changes in the many patients he see's after that period of time. Could this be due because such changes do not typically happen, or perhaps it is due to the treatment regimens he starts people on once they are his patients.

For me, pain/discomfort management is the physical issue, and the psychological issue is wondering if it is purely an issue of pain? For those of you in pain for extended periods of time (let's say beyond 18 months), do you not worry that the pain may lead onto further physical changes? For me, that is my ongoing concern.

Newguy,

Yes I share your concern and wish I could get some concrete answers.  Unfortunately in the case ofthis condition answers seem to be few and far between!

Fred

Fred22 - Woodman - I'm glad I'm not alone n this issue. I do feel like, from a psychological point of view, I deal with peyronie's pretty well. That said, it is this sticking point, this pain/discomfort that is a constant concern. If I woke up tomorrow, and my curvature was worse, but the pain had gone (and didn't return), I could at least think "right, I can possibly go ahead with surgery" and there would be a logical next step. Where pain remains, but other changes do not/have not occured, or are minor, it's very difficult to move forward.

Treatment wise, of course there are avenues to persue. I've been taking pentox now for 2 years, and I am happy with that decision. There are also other oral options that I have taken advantage of, and clean diet, exercise etc. There's still the issue of not quite knowing what is happening though, and the slightly worrying realisation that even Levine and co aren't quite sure what to make of people in pain for this length of time.

Hopefully, with this thread, we can at least keep track of any developments in those suffering long term pain/discomfort, and eventually come to a conclusion about what it might mean for us, and if it's something that will eventually go away, or remain, and any changes to physical condition etc.

All thanks for keeping this thread going...

Woodman I'm interested in how you are using the Celebrex? Just when there are flare ups or on a regular basis. Any idea of how much it takes the pain down on a 1-10 scale?

Pain is all I'm dealing with, I have had a curve all my life. Duration for me is about 16 months. Its not as intense as it was in months 3-5, but its constant or stable, I guess.

For the record:

I have had Peyronie's for almost exactly 1 year now (Happy Anniversary?). In the first three months of the disease (after injury) I experienced pain during erection and pain during urology visits (during palpation), hourglassing, and minor curvature. I was on pentox for a total of 9 months. The pain was 90% gone in 4-5 months on pentox. I have since stopped taking pentox because my pain is completely gone. I still take L-arginine and vitamin D because they have no side effects and they can't hurt. Pentox was definitely a big help though. If I notice any further negative changes I will get back on it.

Newguy: good point about pain and the psychological factor. I started doing much better all around as the pain went away, even though the deformity is still "noticeable." I know that the size changes can be devastating but it's the pain that makes sex unpleasant. After awhile, I just got used to my "new look" down there and the wife says that although she can see the changes that I'm referring to, everything feels great where it counts. I wish urologists would focus more on the pain management aspect instead of just saying, "the pain will probably go away." When I was in pain, I just kept thinking about how wrong everything must be and how diseased I was. Now I just look a little strange but I feel pretty close to normal.

If it gets worse, more pentox and eventually, surgery.

-Skjald

Quote from: newguy on March 11, 2010, 02:32:13 PM
Fred22 - Woodman - I'm glad I'm not alone n this issue. I do feel like, from a psychological point of view, I deal with peyronie's pretty well. That said, it is this sticking point, this pain/discomfort that is a constant concern. If I woke up tomorrow, and my curvature was worse, but the pain had gone (and didn't return), I could at least think "right, I can possibly go ahead with surgery" and there would be a logical next step. Where pain remains, but other changes do not/have not occured, or are minor, it's very difficult to move forward.

Treatment wise, of course there are avenues to persue. I've been taking pentox now for 2 years, and I am happy with that decision. There are also other oral options that I have taken advantage of, and clean diet, exercise etc. There's still the issue of not quite knowing what is happening though, and the slightly worrying realisation that even Levine and co aren't quite sure what to make of people in pain for this length of time.

Hopefully, with this thread, we can at least keep track of any developments in those suffering long term pain/discomfort, and eventually come to a conclusion about what it might mean for us, and if it's something that will eventually go away, or remain, and any changes to physical condition etc.

Newguy,

Glad we've started this thread if, for no other reason, so that those of us with long term pain at least realize we are not alone.  I may have missed it, but how long have you been experiencing pain?  Reading that you've been on pentox for 2 years and still experiencing pain is a little discouraging.  It's really a mystery why this condition effects all of us in different ways.  Some never experience pain while with others, pain is the primary issue.  If I could get rid of the pain which I've had for 4 years now I know I could stop constantly obsessing about Peyronie's, plus being able to resume a normal sexual relationship with my beautiful wife would mean so much!

Fred

Quote from: Fred22 on March 12, 2010, 02:17:12 PM
I may have missed it, but how long have you been experiencing pain?  Reading that you've been on pentox for 2 years and still experiencing pain is a little discouraging.  It's really a mystery why this condition effects all of us in different ways.  Some never experience pain while with others, pain is the primary issue.  If I could get rid of the pain which I've had for 4 years now I know I could stop constantly obsessing about Peyronie's, plus being able to resume a normal sexual relationship with my beautiful wife would mean so much!

Fred

I had a bout of peyronie's years ago, and this more recent injury came as I was on the road to treating this condition (during traction - two years ago). I restarted on pentox immediately. The positive is that, all in all my curvature has been reduced due to my efforts, but the injury has been a setback. It seems to go in cycles, sometimes it'll appear to be getting better, then it will hurt again. It doesn't appear to be directly tied to anything I do, or it is is, there is a delay significant enough to mean that I don't understand why it gets better or worse. I might go see another urologist in a few months if the situation remains the same. 

I do lapse very occasinally, in terms of diet, supplement regimen etc. I really do want to make sure I'm doing all that I can at all times. This month I'm going to try something new. I will get erections (as I think there is sound logic to that, and little logic to the opposite) but will not engage in any sexual activity of any kind (including masturbation). I just want to see if that allows the healing process to better work itself through. Aside from this, I really can't think of any other angle to try that I haven't already. I have told urologists that I am not willing to go down the injections route at this time. It just seems like a bad move.

There have been 'slight' changes to my physical condition over the months (aside from the general improvement that I have experienced and which seem to have levelled out). A few months back a small hard nodule appeared on my penis,and i mentined it on here at the time. Since that time, it was completely disappeared, and left no trace. This may or not not be because of the supplements i'm taking. Also, on the top underside of my penis a sore area and slight bump (not a nodule though, just sore) appeared a few months back. This has now gone and has left a very slight indentation. It is insignificant though. The bulk of the pain/discomfort is always at the bottom left on my penis. No changes have occured there thus far.

I do believe that the supps i am taking, and my healthy lifestsyle are helping me. I half wonder whether, trying to get on top of this situation as it develops, has resulted in a kind of to-and-fro, where some healing takes place, and then some damage is done, and this is repeated over and over. Who knows. It would clearly be a mistake to stop taking pentox at this stage. I have been very busy of late, and try to put these things to the back of my mind, but I'll likely try to get some more profession input on this. Maybe I'll pay for a telephne consultation with levine if he still does that.

Quote from: Skjaldborg on March 11, 2010, 11:41:56 PM
For the record:

If it gets worse, more pentox and eventually, surgery.

-Skjald

Skjald,
Don't count on surgery to relieve any pain. Surgery is generally used to correct extreme curvature.

Quote from: lwillisjr on March 12, 2010, 11:17:51 PM

Quote from: Skjaldborg on March 11, 2010, 11:41:56 PM
For the record:

If it gets worse, more pentox and eventually, surgery.

-Skjald

Skjald,
Don't count on surgery to relieve any pain. Surgery is generally used to correct extreme curvature.

Perhaps the 'eventually' referes to a time when pain is gone, and curvature is stable. Hard o tell of course.

I dod totally agree on this pain point though. I understand that on occasion Levine has offered to operate on those with long term pain, on the assumption that their damage is likely nerve related. H could be right, but it's one hell of a risk to take should his assumption turn out to be wrong.

I was referring to worsening curvature, not pain. Surgery would be an option for me if I experienced more deformity.
-Skjald

elysianfields - I take the celebrex everyday. I take it in the morning after I get up and eat something. If the pain is real bad sometimes I take one in the evening too around bed time after I have eaten dinner.

It helps some days better then others. I would say it knocks down the pain 3 to 4 points on the pain scale. I did something wrong with the fastsize about 5 days ago so I am really hurting now but I was doing pretty well on it before hand. Iam crossing my fingers I havent done more damage to my condition.

It seems reading on the forum for over a year now that people that have constant and chronic pain have problems with the VED & Fastsize therapies. I also notice a good portion of guys using the VED and a few using the fast size have little to no pain issues and they seem to have the best outcomes from using the devices.

I wanted to ask how many of you guys have experianced more pain problems during or after the use of these devices?

Personnally myself I ve never gotten further then two weeks with the VED and almost the same with the Fastsize. I think with the fast size I stretched too much a little to quick but I didnt realize anything to be wrong until the next day. Iam crossing my fingers the pain subsides and I didnt do further permanant damage. This all concerns me bacause if I cant figure out how to manage one of these devices regularly with out experiancing pain I think Iam just about out of options. We dont really have a lot to start with from the get go.

Look forward to hearing everyones input.

Woodman

Quote from: Woodman on March 17, 2010, 12:54:52 AM
It seems reading on the forum for over a year now that people that have constant and chronic pain have problems with the VED & Fastsize therapies. I also notice a good portion of guys using the VED and a few using the fast size have little to no pain issues and they seem to have the best outcomes from using the devices.

I wanted to ask how many of you guys have experianced more pain problems during or after the use of these devices?

Personnally myself I ve never gotten further then two weeks with the VED and almost the same with the Fastsize. I think with the fast size I stretched too much a little to quick but I didnt realize anything to be wrong until the next day. Iam crossing my fingers the pain subsides and I didnt do further permanant damage. This all concerns me bacause if I cant figure out how to manage one of these devices regularly with out experiancing pain I think Iam just about out of options. We dont really have a lot to start with from the get go.

Look forward to hearing everyones input.

Woodman

Woodman,

We've discussed my experience with pain, but I'll add my experience RE VED usage here.  You've got me beat if you've been able to get 2 weeks of VED therapy without being forced to stop because of pain.  I think maybe 3 or 4 days in succession is all I've been able to get in so far.  I plan to try again if my pain subsides.  I've been taking 800 mg ibuprofen 2x per day, but it doesn't help much (if at all).  I hope others will join in this discussion, perhaps offering some suggestions regarding pain. Those of us with chronic long term pain seem to be in the minority and I'd welcome any theories from anyone who has ideas as to why some have pain and others none, and suggestions regarding pain management.

Fred

Fred22:

Been keeping up with your VED therapy as you have reported it here. Here are some suggestions that you might try to see if it helps:

1. Try doing the VED therapy every other day instead of daily.

2. Reduce the amount of vacuum you are presently using and work slower with the pumping cycles. And, do not hold the pumped up pressure more than a few seconds before releasing. Use trial and error method of determining how much  pressure you can stand without getting pain or discomfort with or after each session.

3. Make sure that you are using plenty of lube to provide a good slippery surface on the penile shaft skin. Lack of lube can and will contribute to penile pain after pumping sessions.


Try the above to see it will help. Some guys in the past have found that it worked better for them by not doing the exercises daily. Let me know what if any success you have.

Old Man

Quote from: Old Man on March 17, 2010, 04:44:57 PM
Fred22:

Been keeping up with your VED therapy as you have reported it here. Here are some suggestions that you might try to see if it helps:

1. Try doing the VED therapy every other day instead of daily.

2. Reduce the amount of vacuum you are presently using and work slower with the pumping cycles. And, do not hold the pumped up pressure more than a few seconds before releasing. Use trial and error method of determining how much  pressure you can stand without getting pain or discomfort with or after each session.

3. Make sure that you are using plenty of lube to provide a good slippery surface on the penile shaft skin. Lack of lube can and will contribute to penile pain after pumping sessions.


Try the above to see it will help. Some guys in the past have found that it worked better for them by not doing the exercises daily. Let me know what if any success you have.

Old Man

Thanks, Old Man.  Will do.

Fred

Quote from: Woodman on March 17, 2010, 12:54:52 AM
I wanted to ask how many of you guys have experienced more pain problems during or after the use of these devices?

I tend to think that used correctly the vast majority of men won't have issues with these devices. It's hard to put a figure on it, but from my time here I'd say that 95% of people, using the VED correctly do not expience many problems. I think the figure is less for traction use (perhaps due to the length of time it has to be worn for), but it's still high.

Unfortunately, there will always be some individuals who follow instructions to the letter, but just aren't suited to a device. Whether it's the positioning of a scar, or a certain weakness that doesn't take much to aggrevate, who knows, but it does seem like a situation that applies to some. It's definitely worth trying though (many men try neither VED, or traction), to see if progess can be made.

Quick update on Pentox. I'm about a 2 months into taking it (3xper day). Pain has subsided noticeably now. It still bothers me a little when sitting but for the most part I don't notice it. I'll post monthly updates. Thanks for the info guys.

Quote from: elysianfields on March 28, 2010, 09:07:16 AM
Quick update on Pentox. I'm about a 2 months into taking it (3xper day). Pain has subsided noticeably now. It still bothers me a little when sitting but for the most part I don't notice it. I'll post monthly updates. Thanks for the info guys.

Any noticable side effects?

Fred

No side effects.. although the pain has now come back again.. but most likely due to the fact that I'm sitting most of the day now which seems to make things worse ...arghh  :-[ still overall things are better than they were a year ago. Just don't know how much the Pentox is helping at this point.. Just have to hope better days ahead.

Having had Peyronies Disease since late 2008 I went through a rather painful "inflammation" stage. My penis was painful even while flaccid. That particular pain has now more or less disappeared. However when my penis is erect - if you can call it that given that my penis has lost about a third of its length - my penis is still rather painful. It's partiularly noticeable on the side where the "plaque/hardness" is. Will this pain/discomfort ever go away? I have come, more or less, to accept that my penis will be "bent" for the rest of my life. However, the thought of erectile pain (something that would have been incomprehesible in my youth) really gets me down. Can anyone else "out there" give me some advice/thoughts on how long this "phase" might last? Is there any solution? Help please.

I have developed pain at the base of my penis... beneath the pubic hair area.  It almost feels like 2 tendons are being stretched.  I wonder if fastsize is adding to this problem... also, I switched from Viagra to Cialis and have been having constant erections and nighttime erections...

Anyway, what exactly connects the penis to the body on the inside - are there really 2 tendons in here that are sore?  I've never had soreness in there before... i've had it just about everywhere else.

MikeSmith:

Mike, there are basically two tendons that hold the penis intact with the body and help with erections. They extend all the way from the base of the pelvic area on out to the point where the shaft joins the body. If they are overstretched you will experience severe pain in most cases.

It is possible the the penile stretcher you are using put too much pressure on the body where these tendons attach, etc. I would suggest that you cease the stretching device for a few days to determine if the pain goes away. Also, if you are using the VED therapy, the mouth of the VED tube may be pressing too hard in the same spot that the stretcher device is resting when in use.

Try several things like the above and last of all, but not least, cease the VED and the stretcher for a week to see if your body returns to normal again. If it does not, I would recommend seeing a Uri for a consultation about the problem.

Old Man

Mike, they are the suspensory ligaments, not muscles.  You have damaged them with the extender. Ive never heard of anything but damage done with the extender(well except for a few who had surgery). I would stick to the ved.  Id like to see the same doctors who promote and make a buck off the extender use it on themselves.  Lenny

Yeah... i think the instructions are way too intense from Dr. Levine's office. They want you to start 2 cm past your stretched length (base to the start of the head - not full length) which is way too much pressure, especially on the base...in my opinion. 

Also, I do think the cialis & some extra/unexpected sex may have contributed to this.  Going from having about 60 minutes of an erection in 1 week (cumulative) to several hours over two days was probably not the best idea - plus I just had the VI 4 days earlier (the black & blue was gone).   Too much going on.   However, in the past - the idea of ANY pain in this area would've been a joke (literally). 

I ended up taking regular bayer aspirin.  I added back the pentox for a few days since everyone says it helps pain there & has few side efects... and then I put some ice on the ligament area for about 20 min (total - just in case ice wasn't the right way to go).  I think ice is not good past 48 hrs.  So, the pain is about 50% today of what it was yesterday (when it was hard to shift from sitting to standing, honestly).   

I think the VI is made the curve worse yet again - though I have not taken pictures to be certain....I practically ejaculated backwards.  However, the hourglass on the right side appeared to have filled in a little bit - where it was also extremely black & blue after the VI.  I know it's too soon for VI to have technically worked - but perhaps all the needle-stabbing at the scar tissue broke it up a little bit?  I just hope it doesn't re-form 2x as bad & calcify...which scar tissue would tend to do...I guess that's part of why they want you to keep stretching it.

I'm sure that over doing either the traction or VED could cause some pain.

Mikesmith, what instructions are you referring too from Dr. Levine. He always told me to wear it to a comfortable stretch and not over do it. Much to the same that Old Man emphasizes not to over pump the VED.

There's a handout they gave me in hard copy that says to stretch it to 2 cm past your flacid length "to start" - and then to increase it after that.  I still haven't even gotten 2 cm past my flacid length.  That's quite a stretch.

I can make a PDF of this document later on.  

I think there was  a combo of factors lately... I just wish the pain would go away. I think the pain at the base is goign away but there's soreness in the shaft still.   Maybe I never fully recovered from the VI pain.  I am takin aspirin, pentox, vit e, fish oil, but it's not helping that much.  Maybe a few days of medrol will help from my GP.

I would be interested in a copy. I would guess they assume most men would be able to easily tolerate 2 cm beyond flacid length. But if you are not able then certainly back off to something more comfortable. Everyone is different and I think we all are better judges of our limits. Whether traction or VED..... don't over do it.

No prob... I scanned it & sent it to your email.  Since I got it during the office visit, I feel a little weird posting it openly on the web w/o his permission - but I think email is ok...plus you're his pt anyway.

Hi - I am now about 5-6 months into this, and I've had VIs.  I've used fastsize on and off... and just used the VED a few times.  I only took pentox for a month.

Anyway, I am having a lot of pain - even when flaccid. There is also increased sensitivity - in a bad way.  In the shower, if water hits it (particularly the head) - there is just searing pain.  I have no idea what is going on.  

The pain feels like I had sex 15 times in 1 day & then woke up the next day - but of course I have barely done anything in reality.  I think the VIs have made the pain worse...or is this normal at the 5-6 month stage?  I am implicating the VIs because the pain was severe after the lidocaine wore off & the pain I have now is like 10% of what that pain was.

I am scheduled for a VI next week but I think I will just go in and talk to my doctor about the pain instead.   Something bad is happening in general because I also seem to have lost a 1/2 inch of length from when this all started... I don't know if the scar is contracting or what... but I do know what is going on is not normal for me.

Thanks for any advice.

I think it'd be a good idea to get back on pentox, and to take a break from VED and traction until the pain decreases. It's certainly not beyond the realms of possibility that the injections are connected to this pain. I'm not sure that I'd like to comment on whether it's a good idea or not to continue with that treatment. Maybe others can contribute?  

Perhaps you can contact Levine. You mentioned elsewhere that he wanted to see you after 6 injections. If you explain the level of pain and how it made you black and blue previously, maybe he will have a view of whether you should continue?

Agree that you need to discuss with your Doc. He may have had patients with a similar experience or you might be the first So is hard to say what is a "normal" reaction here. Just because you are scheduled for the next injection doesn't mean you have to do it. Let the nurse know you want to discuss your symptoms with the doc first before she shoots you with the Lidocaine.

Les

Hi,  Thanks for the replies.  Yeah, I re-started pentox a few days ago since I heard a lot of positive things about it for pain on this board.

At the next appt, I am going to ask my doc about this pain .  I also now have nodules instead of just a "band" of scar tissue.  The nodules formed exactly where the plaque was...the area is just harder and rounder now.

 At this point, I think the plaque has gotten harder and there may be a new lump from where the needle went in that has not hardened (yet).  

Hi All, feel very happy finding this site to share common desease sypthoms. My short story: I felt 12 months ago some" roughness" in the dorsal shaft side close to glans. No other sympthom. 7 months ago I begun to fell pain inthe penis tip (meathus), simultaneously I was diagnosed with Bacterial Prostatitis. I´m taking dutasteride and Serecur ( Serenoa Rapens), the pain now is more noticeable, not only at the tip but the glans too, lots of disconfort. I have an apointment with my urologyst next week, and I´ll refer him about my concern of having Peyronie¨s desease. Tha pain is on a "all day basis" except when at bed. Some sort of "hard Tissue" can be felt alongside of middle of shaft. I´ve read a lot of post here, but I would like to have some recommendation about "Pain Management" from previous experiences. Also I noticed two months ago a bent upwards very close to glans.

Thanks in advance for any reply,

P.S Sorry for my English

Can you share some more details regarding the pain you are feeling. For example is it only during urination (since you mentioned the meatus), is it during a particular time like during and erection, etc.

Bacterial prostatitis would present itself similar to a urninary tract infection and could explain some of the pain. A recent bend that has devleoped could be indicative of peyronies.

Thanks for your answer and interest Iwillisjr, no during urination I do not feel pain. Pain is located at the meatus, and in the left top of glans. Is felt when is touch or when rubs with the underwear, or when sit.At the inicial stage of pain, some association with prostatitis was made due to the fact that is sometimes this desease has this symthom. Pain is when not erected. Also a discomfort in the glans is felt. If peyronie´s, is there any effective method of reducing pain? Laser ? etc?
Thanks again

To give an update, my dr. injected kenalog (steroid) for the pain.  There is a published paper that steroids do not help for Peyronies Disease itself but they do help for the pain.  They shouldn't be used a lot, he said - but once a month is probably ok (every other VI).  He did it with the VI numbing solution (20 min before the VI) and I have noticed much less swelling with he VI too.   Hard to tell if I am in pain because I'm still post-VI where everything feels odd...but I'll edit this post & update in a week.   I do think I'm in less pain than before - but I also started back on Pentox last week. 

Mike - thanks for the post. I'm almost 20months into this from the first onset of pain. I have been taking Pentox 3x a day for about 5 months. Hard to tell if its had any effect other than things are certainly no worse than they were 5 months ago. My pain is now what can best be described as "discomfort" ranging from a 1-3 on a 10 scale. Always there when flacid, more so when sitting vs standing. But thankfully the pain is much less noticeable when erect..

The pain you are describing matches where I was at months 2-6, maybe a 8-9. Like you state even a shower can hurt or simply walking. I had to push hard to keep working out at its worst. I haven't worn briefs since the onset.

There were times from 6 months onwards where it almost went away only to come back. I finally got to see a good Uro around 8 months in but other than a Dopler decided not to do anything as my curve is Congenital (has it since a teenager) and around 30 degrees.

I'm going to stick with Pentox for a full year and hope for the best. Hang in there the pain should ease off as time goes on.

So here's a little update on the pain situation.   First, what's weird is the lack of consistency -- sometimes I have pain when erect, sometimes not...sometimes only after an orgasm...sometimes not...and sometimes when flacid, sometimes not. 

I have stopped trying to prevent it, but I think now that I am 2-3 weeks into the VED protocol and stopped the VIs a month ago, the pain has gone down.  I actually had an extended period of sexual activity (I wouldn't call it "sex" per se thanks to the degree of curve) - and very little pain the next day to my surprise.  I had used the VED that day & in that week.  I don't know if other posters have noticed the VED cuts down pain - or how that could even work... but it seems like it might be having a positive effect.  If not that, then stopping the VIs has helped with the pain. 

The pain didn't improve much right after the kenalog but he only gave me a little bit to start.  I'm not sure if the kenalog had an effect on me, but it is published to have effects (though a different  doc w/ 30+ yrs of practice -- not in urology -- said kenalog causes calcification and I should've used celestone...so that's just an FYI for people on here).

I am also on 5 mg cialis every other day + arginine.  I stopped pentox (again) due to the return of sleep problems.  It seems that this drug doesn't agree w/ my system.   My nighttime erections (when I have them - usually on day 1 of cialis) are not painful really...so that's good.  I think the more of those, the better...as another poster mentioned too.

Sleep problems - I seem to have improved the length and quality of my sleep by taking my last Pentox of the day earlier, with a very small snack, instead of with supper (usually right before bed).  No problem going to sleep, just sleeping long enough.  I am very early with this change, but encouraging so far.

I tried 10 mg Ambien (non-CR) for a week, and it helped me go to sleep, but not stay asleep later in the morning.  It was no better than benadryl.

Quote from: MikeSmith on July 08, 2010, 12:10:07 AM

I stopped pentox (again) due to the return of sleep problems. 

MikeSmith - I agree with your comment about the lack of consistency with the pain driver! I have the same situation. In fact for me the pain is much less when I'm erect which thankfully means that sex is good, its just getting there that's not easy! And the last time I had sex the next day the pain was no worse than before.

The ONLY thing that is consistent for me is the pain is constant at a 2/3 out of 10 and sitting is more uncomfortable than standing.. so maybe that's something that I need to figure out i.e. sitting my penis is retracting and standing its lengthening? (As noted I've been on Pentox and all the supplements for about 6 months now with no improvement/worsening.) I also have less pain when I wake up and can sleep through it no problem.

I think the next step for me the the VED (although I'm not looking to correct my 30 degree left curve). If nothing else I'm hoping that as its consistent with what causes my discomfort to be reduced it may help as a long term solution. I'm taking a trip in a couple of weeks but will start with the protocol upon my return and see how things work out. Keep us posted on how you are progressing.

Are regular nighttime erections an issue?  I think that may have been one of the contributing factors... cialis + arginine seem to have helped w/ that - and there has been less pain (i think... but it's hard to say what is causing what) & i dont overdo anything sexually.

Trazadone gives u a major nighttime erection w/ cialis...but I got worried i was hard all night...which I dont think is healthy.   

MikeSmith:

According to the information that I get from my uros and other sources, any erection lasting longer than 4 hours is definitely not healthy. Permanent damage to the erectile tissue can and will be done if an erection of that length is not ''relieved'' as quickly as possible. In some cases, it has required a trip to an emergency room to have the blood pressure in the penis taken out.

So, I strongly recommend that you find out what is causing the long erections and stop them immediately. You might want to get off your meds for a while to let your body stabilize before resuming them. You could then add one of the meds back at a time to find out which one causes the long erection problem. However, it could be that two or more in combination is the problem.

Anyway, you should take some action ASAP to get to the bottom of this.

Old Man

Mikesmith,I was prescribed Trazadone to help me sleep by my doctor. Used it until it ran out it did help me a little.Later visiting a psychologists I asked him about Trazadone because I heard it helped bring nighttime erections.He told me Trazadone could cause priapism. He said he had a patient who went to the hospital to get help for his painful erection that would not go away on its own.

After hearing this I declined to use the drug! Cialis has worked well for nightime erections. So I think, i don't need more than one drug to accomplish nighttime erections.Besides we all know erections lasting more than four hours can and will cause damage to the penis.

Fubar

Oh yeah I should've mentioned I meant I didn't think it was healthy to have a full-night erection, so I don't take them all together anymore (trazodone, arganine, cialis) - just arganinie and cialis.  I had taken all 3 together once or twice and both times I kept waking up erect all night. I don't think I had a true priaprism or anything but I was worried that was a little abnormal.  it doesn't happen w/ cialis alone or w/ arganine.  Just no cialis + trazodone together (for me...for others maybe its ok).  Trazodone alone also didn't do too much for nighttime erections.    

Hi, I am new here. My name is Mike. For the past 7 months of my life I have been dealing with awful penile pain in the head that gets worse when sitting or ejaculating. I can tell that my penis is starting to bend to the left. I feel like I am losing size, and it is difficult to maintain erections unless I am constantly stimulated or turned on. I am currently on nerve medication (lyrica) because no doctor knows what to do with me. The bend is getting more substantial. I know I was born with a slight bend, but I never noticed it before until now. There is also a little piece of skin that feels somewhat harder (urologists dont feel it as a lump, but can see it). When I am erect this area does get harder and pop out a bit (its located about 3/4 of the way up my penis on the left side of the shaft. Another thing which brings pain is bowel movements. The pain I feel constantly is like a sharp, burning pain at the tip of my penis. You can even see that there is redness and inflammation around the meatus. I have been through every test in the book. Some doctors think it could be pudendal neuralgia, though I do not fit the bill since I have not had a trauma to the area. The other pain I feel when it gets very bad is almost like the feeling of a foreign object in the head of my penis, almost like I have urine left in their but really do not. My urination has changed too and varies all the time from pain to frequency to urgency. Every STD and prostatis has been ruled out. When I am not erect and the pain is at its worse my penis feels hard and tight even though it is flaccid and not erect. Has anyone else experienced any kind of pain along these lines? I am a 25 year old male and I am losing my mind with this. By the way I have no pain when erect, it feels a little sore sometimes almost like I have been having sex for a while, but nothing like the burning pain I feel when I am flaccid. Sometimes I have tingling at the tip when it is erect. Also, when I ejaculate it does not shoot out like it used to, its more of a dribble now, even though same volume. Any help or recommendations would be greatly appreciated. I live in the Boston area, and we have some of the best doctors in the country here, and I am not ready to just settle for this being my life day in day out, with nothing to control the pain.

Thanks,

Mike

Mike some of your pain could be due to your pelvic floor muscle being in a constant contracted state due to either stress or some other reason . I have cronic pelvic pain that does indeed cause pain and irritation problems.  For ejaculation strength you can try doing kegels, although I am not sure what effect it has on men with Peyronies Disease so you may want to ask some of the vets.  The kegels can help with the pain possibly.  Also the loss of size could just be mental, I measured myself a while back before injuring myself and then at some times I would get paranoid and think I'm losing size due to the disease but measurements show that it's mostly mental for right now.

I recall one or two other members who posted once about symptoms. They stated that when flaccid that just the head (glans) of the penis just brushing in their underwear caused pain. I do not recall them posting what they did or if they were able to find a treatment.

Heres a piece of what I was talking about.

Pelvic Floor - In every day life, your pelvic muscles contract and release with every thought.  These muscles are extremely connected with your brains thoughts and emotions.  As your brain processes thoughts, your pelvic muscles either relaxes or contracts.  Even in your sleep.

Tip Of The Penis Pain - When your Lavator Ani muscle    (a muscle that is in your pelvic floor next to the prostate)    is in a constant state of tension, it irritates your prostate.  Your prostate is close to a large bundle of nerves.  One of the nerves is called the Pudendal nerve.  This nerve runs from your anus to the tip of your penis.  When there is constant contraction and tension by your Pudendal nerve, it sends direct pain signals to your penis tip.  This is what causes Penile Pain at the tip of the penis.  It can also lead to you having pain around your rear end, making it very hard to sit.

Kegels - When I was doing the Kegel exercises, I over worked my Levator Ani muscle, thus  causing my pelvic floor to be in a constant state of contraction.  This tense and tender Lavator Ani muscle irritated my pudendal nerve and thus caused referred pain to the tip of my penis.


So apparently Kegels may not be the answer, but it may help.  You can try placing heat and massaging the muscle between the anus and testicles to see if that helps also.

Well, I finally got a date and visited my uro. He said that pain that I feel at the tip of penis and upper glans, may be due to the plaque pressing (Up) the dorsal penis nerve. I´m doing now Laser and ultrasound, but no pain improvement so far. He told me that Laser is quite effective, but same was a very slow process and that it could take more than 20 sessions to achive any relieve. ( I´m on the 13 th now) My pain is similar to what was explained by Mike except I dont feel it when urinating or erect. Pain was present also for the last 7/8 months. It´s really frustrating
Regards

Nerve Pain

The usual treatment for nerve pain is Neurontin. My wife had some nerve ending pains and that is what her doctor prescribed. Worked like a charm.

Jackp

Quote from: bertie67 on April 09, 2010, 04:29:52 AM
Will this pain/discomfort ever go away? I have come, more or less, to accept that my penis will be "bent" for the rest of my life. However, the thought of erectile pain (something that would have been incomprehesible in my youth) really gets me down. Can anyone else "out there" give me some advice/thoughts on how long this "phase" might last? Is there any solution? Help please.

This differs from person to person. It did not go away for me, and the only solution (after trying the vitamins and the injections) was to finally have the surgery last month. I know lots of guys have concerns about loss of length or hardness, but my main concern has been and still is the question of pain. No point having lots of inches if it hurts to use it!

The pain was also a problem for my wife - who did not like the thought that our lovemaking was hurting me. Everything ground to a halt. Fortunately we have a very solid and communicative relationship, so we're still good.

Quote from: MikeSmith on July 08, 2010, 12:10:07 AM
 I don't know if other posters have noticed the VED cuts down pain - or how that could even work... but it seems like it might be having a positive effect.  

I talked with Chris Spivey at Urology Centers of Alabama about VED use and pain reduction.  She said that VED therapy could be useful if you have plaque trapping a nerve....that over time the stretching could pull the plaque away from the nerve, resulting in a decrease of pain.  Take that for what it's worth. Fred

Quote from: Fred22 on August 24, 2010, 03:44:54 PM

Quote from: MikeSmith on July 08, 2010, 12:10:07 AM
 I don't know if other posters have noticed the VED cuts down pain - or how that could even work... but it seems like it might be having a positive effect.  

I talked with Chris Spivey at Urology Centers of Alabama about VED use and pain reduction.  She said that VED therapy could be useful if you have plaque trapping a nerve....that over time the stretching could pull the plaque away from the nerve, resulting in a decrease of pain.  Take that for what it's worth. Fred

I was under the impression that Chris Spivey was quite elusive. I wonder if she can provide some kind of update or further insight into the VED protocol. It would be good to know if she has anything further to contribute that could be of value to us. As for VED cutting down pain, I do tend to agree that it's something I've noticed too.

Quote from: newguy on August 24, 2010, 04:15:28 PM

Quote from: Fred22 on August 24, 2010, 03:44:54 PM

Quote from: MikeSmith on July 08, 2010, 12:10:07 AM
 I don't know if other posters have noticed the VED cuts down pain - or how that could even work... but it seems like it might be having a positive effect.  

I talked with Chris Spivey at Urology Centers of Alabama about VED use and pain reduction.  She said that VED therapy could be useful if you have plaque trapping a nerve....that over time the stretching could pull the plaque away from the nerve, resulting in a decrease of pain.  Take that for what it's worth. Fred

I was under the impression that Chris Spivey was quite elusive. I wonder if she can provide some kind of update or further insight into the VED protocol. It would be good to know if she has anything further to contribute that could be of value to us. As for VED cutting down pain, I do tend to agree that it's something I've noticed too.

Here's how I happened to get in touch with Ms. Spivey.  I clicked on the UCA e-mail link somewhere on this forum, provided a very short description of my experience with Peyronie's, and the next day a very nice lady named Sherry from UCA called me and discussed my condition.  She then said she would see if Dr. Christine (the head surgeon) was still in the building (it was around 5:30 in the afternoon) and after a short wait she said that he had left the building, but she would check to see if Chris Spivey was still around.  Afew minutes later Ms. Spivey was on the phone and we had a good discussion of their treatment options, etc.  She said that the first thing they address at UCA is the pain issue and get that resolved before exploring other options.  Sherry also told me that she would have Dr. Christine call me and then called me back a couple of days later to ask if he had called.  She said he "promised her faithfully" that he would call me.  She even tried to locate him.  I still haven't heard from Dr. Christine, but I'm not that interested in talking with him as I don't think I'm a candidate for surgery since I've been in pain for over 4 years.  I was told by Dr. Milam's assistant at Vanderbilt that they might opt to perform surgery but we'd have to have a serious discussion regarding the fact that surgery could possibly make the pain even worse.  (Not what I wanted to hear).  If I do hear from Dr. Christine, I'll post any information I receive.

Fred 

Dr. Brian Christine from UCA called me yesterday and we had a good discussion regarding pain, which is my major issue.  He told me the same thing that Dr. Milam's assistant had said; that surgery could actually end up making it worse.  In fact, he left me with the impression that if you go into surgery with pain, you'll likely come out of surgery still in pain.  He also said they had had some good results with Trental (pentox), which I tried and had to stop because it spiked my anxiety level.
Fred

Quote from: Fred22 on August 27, 2010, 10:44:39 AM
In fact, he left me with the impression that if you go into surgery with pain, you'll likely come out of surgery still in pain.  

This is the only positive change I have noticed since my surgery just over a month ago - less pain. I am thankful for this, because any stimulation at all caused pain before. Now I am not really getting much happening in terms of erections, but at least what I DO have is much less painful. So it seems this issue - like so many Peyronies Disease issues - may be widely variable and depend on the individual.

I've had penis pain for 1 month now, consistantly. It sucks. I'm hoping this goes away eventually. How long did or has your penis pain lasted for?

My most severe pain lasted a couple of months.  30-days of prescription ibuprofen reduced the pain to a tolerable level, but not completely.

Mine was only when I had arousal. A couple of years. Surgery seems to have fixed it for now.

Quote from: Brightdog on October 11, 2010, 12:27:56 PM
Mine was only when I had arousal. A couple of years. Surgery seems to have fixed it for now.

That's the exact opposite for me. Erections feel good with very little pain but after I ejaculate then my penis feels very achy and tired on the one side.

brooks, it was that painful eh? what kind of pain was it? You still have pain now?

Early on, my erections were VERY painful.  After about 6-8 months, the discomfort became tolerable.  Since then, no "pain," just some discomfort when fully erect.

My erections have had pain for over 4 years now... after sex it is definitely ibuprofen for me.

crashbandit - Just to point out, pain lasting mutliple years does not appear to be a common occurence. It certainly does happen, but I don't want you to assume it will happen to you by default.

Quote from: newguy on October 12, 2010, 11:58:45 AM
crashbandit - Just to point out, pain lasting mutliple years does not appear to be a common occurence. It certainly does happen, but I don't want you to assume it will happen to you by default.

God I freakin hope nope not, and no offence to the guys that have experienced this. I should just get on pentox, it sounds really safe.

As soon as I get stressed out, my penis pain seems to intensify. My penis is weak or damaged along the left side and gets increasingly achy during stressful times.

Does anyone else notice this? What are some possible reasons for this aching reaction?

Bandit

Sounds like nerve pain. See your doctor and if it is nerve pain a prescription for neurontin could help.

Jackp

I was thinking about getting lyrica at one time for possible nerve issues with my Peyronies Disease but didn't.

How long for this nerve medicine to work? Is lyrica the same stuff, maybe better for Peyronies Disease?

Quote from: crashbandit on November 07, 2010, 01:33:34 AM
As soon as I get stressed out, my penis pain seems to intensify. My penis is weak or damaged along the left side and gets increasingly achy during stressful times.

Does anyone else notice this? What are some possible reasons for this aching reaction?

Yes...my pain often increases with stress.  My pain has been long term (4 1/2 years) so I suspect there is neurological involvement.

Quote from: crashbandit on October 11, 2010, 03:38:32 AM
I've had penis pain for 1 month now, consistantly. It sucks. I'm hoping this goes away eventually. How long did or has your penis pain lasted for?

4 1/2 years and counting....but this is not typical.....Fred

Bandit

I do not know about lyrica. I know that neurontin will also help anxiety. It should help within about a week.

Jackp

Thanks jack,

Im going to talk to my doctor about trying this for abit. If it dosent work within a short period, like a month, I'll just stop taking it.

It's kindov scary when you read the information on Neurotin and it says, "Side effects can be mild or sever, temporary or permanent." I hate seeing that word permanent, although I'm sure the chances are very small.

Bandit

My wife takes 100mg twice a day for vulva pains. It stopped the pains within a week. She is very sensitive to medicine but has had no problems with neurontin.

Jackp

I did a drug interaction between the trental, trazodone and the new comer, neurontin. It seems theses a moderate interaction between trazodone and neurontin. Something about CNS/respiratory depression but it says to monitor it. I don't really understand what this is saying, can I still take these drugs together but with caution and monitoring? I only take the trazodone at night and not always and just 25mg.

http://www.drugs.com/interactions-check.php?drug_list=2228-0,1147-677,1826-1179

Yes, there's no call for being alarmed, despite the more extreme examples of what can happen. Typically pain lasts months, but gradually improves over that time.

Mine will hurt more too when I am stressed, get upset over something, or being sleep deprived.

Quote from: Woodman on November 08, 2010, 09:43:54 PM
Mine will hurt more too when I am stressed, get upset over something, or being sleep deprived.

How long has this discomfort been going on for you woodman? And can you describe the pain you experience during these stressful periods? How is the pain when your relaxed and not high strung?

Quote from: crashbandit on November 08, 2010, 11:40:55 AM
I did a drug interaction between the trental, trazodone and the new comer, neurontin. It seems theses a moderate interaction between trazodone and neurontin. Something about CNS/respiratory depression but it says to monitor it. I don't really understand what this is saying, can I still take these drugs together but with caution and monitoring? I only take the trazodone at night and not always and just 25mg.

http://www.drugs.com/interactions-check.php?drug_list=2228-0,1147-677,1826-1179

It's just that both have a sedative effect but 25 mg. trazodone is a very small dose...maximum dosage is 600 mg. if I remember correctly...Fred

Bandit - I am in the minority in the pain dept. like Fred. I ve experianced long term pain with my condition. I ve had it since day one its now been almost 3 1/2 yrs. Its gos from very bad down to annoying it has a mind of its own. So I am not a good candidate to use to determine pain factors far as duration. The vast majority of guys do not have long term pain it usually dies out over time.

When I am all wound up the pain will come on. Its hard to discribe.......its usually a burning aching pain sometimes with sharper pains on top of it. I get the pain in the areas where the plaque is I have 3 plaques.

I get the same pains in diffrent levels normally, but stress will bring them on and will make them worse. I try to stay calm and keep my stress low as possable.

Quote from: Woodman on November 10, 2010, 12:23:10 AM
Bandit - I am in the minority in the pain dept. like Fred. I ve experianced long term pain with my condition. I ve had it since day one its now been almost 3 1/2 yrs. Its gos from very bad down to annoying it has a mind of its own. So I am not a good candidate to use to determine pain factors far as duration. The vast majority of guys do not have long term pain it usually dies out over time.

When I am all wound up the pain will come on. Its hard to discribe.......its usually a burning aching pain sometimes with sharper pains on top of it. I get the pain in the areas where the plaque is I have 3 plaques.

I get the same pains in diffrent levels normally, but stress will bring them on and will make them worse. I try to stay calm and keep my stress low as possable.

Thanks for the feedback woodman and fred.

woodman - I got the burning and aching thing going on too but I have no plaque. Did your plaque develope before the pain or did the plaque develope after the pain?

Bandit- The pain started before the plaques developed and continued once they where present.

Dang.... I had a feeling you were going to say that. Can you give me an ETA on when the plaques arrived after the pain first started?

My first plaque the doctor was able to feel it on exam in approx. 6 months from my original injury. I am not sure if it developed faster cause I was still new to the whole condition and not as well educated as in the later 2 instances. Also, it is deeper in the tissue near the base on the left side. The second plaque developed after a reinjury due to not being use to the new curve and ignorance. It took exactly one month to pop up. It came up literally over night. Woke up one morning wasnt there layed down to take a nap felt something diffrent looked down there it had appeared. The third plaque came up about 4 months later after the pain started. The jurys still out how that one developed.......I think it was part of the second reinjury and it just needed that next little push to tilt it over to develop a plaque.

Although our symtoms have things in common I would not use my experiances as a bench mark for what may happen to you. I ve learned that this condition manifest itself in many many diffrent ways.

There is a new study out on Pelvic Floor Pain:

http://consumer.healthday.com/Article.asp?AID=648497 (http://consumer.healthday.com/Article.asp?AID=648497)

MikeSmith:

I was curious about your " glandular" pain :  "Anyway, I am having a lot of pain - even when flaccid. There is also increased sensitivity - in a bad way.  In the shower, if water hits it (particularly the head) - there is just searing pain.  I have no idea what is going on." I also am experiencing this lately. I injured the shaft very near the glands and the sometimes the head feels super sensitive. did the pain you experienced around the head  occur subsequent to VI or was it somehow related to one of your plaques?

Many Thanks George for this very interesting article.

It's been about 6 mos since that post... and I think all the excess pain was due to the VI shots and also the fact that I was in the active phase at the time.  I think I am in the more stable phase now.   I do not have that level of pain anymore thankfully... it was really not a good summer... ubiquinol and penoxifiline have helped people w/ pain on this board.

I have had Peyronies for about five months now. When I was first diagnosed in February, it felt like I had "sprained" my penis, for lack of a better word; whenever I would push it past a certain point, there would be a sharp pain in the base and center of my penis, but otherwise it was normal (no ever-present pain, curvature, etc).

My doctor put me on Pentox, l-Arginine, and vitamin E. I'm not sure what exactly did the trick, but about one week after I started taking the meds my pain had completely subsided. About a month and a half ago, having not seen any symptoms for a while and having consulted my doctor, I decided to stop taking my medication and see what would happen.

I was still fine until about two weeks ago when I started getting pain in my penis again. However, the nature of the pain is very different now: it feels like the aching pain that spreads through the whole penis when you have a super-hard erection. At first it was mild and would only appear sporadically, in the mornings or if I was extremely aroused. Now, though, it has started increasing in intensity and frequency, and for the last two days my penis has ached throughout the day, regardless of whether or not I have an erection. This has been very painful and distressing in general, but it is also making sexual activity very difficult. As of the beginning of July, I have resumed my medication, but so far with no signs of improvement.

Does this sound familiar to anyone? Does anyone have any advice or stories to share that might be relevant? Is there anything I can do or do I just have to be patient and wait it out? I have tried browsing the forum for information, but have so far not been able to find anything definitive besides what I've already been trying. Thanks.

What stopped your pain was Pentoxifylline.  Stopping it in a situation such as yours is not good.  You can drop the Vitamin E for sure.  It is next to useless.  L-Arginine will not help your pain at all but can improve your erections.  My advice at this point would be to add CoQ10/Ubiquinol to the mix.  I *can* help with pain.  CoQ10 works for younger guys, Ubiquinol tends to be better for those of us over 40.  I would also recommend Celebrex.  Multiple guys around here are finding Celebrex helpful with pain.  - George

I think vitamin E is the cause, somehow. I stopped using it anyway because of this reason. If you read the description on vit. E you can see it can also cause some sort of infection in the veins. Maybe thats it.

I have pain which feels very similar to yours. I also have no curve or ED problems, just pain and discomfort and the "sprained" feeling. My pain has flare ups for about 2 weeks of canstant pain (expecially after ejaculation), where it is really bad (5 out of 10).

Then it turns into a mild constant discomfort (2 out of 10). During the flare up, my flaccid twisting (to the left) is much worse, and the penis shrinkage is worse as well. There is also a cold type sensation in the glan as well.

Since my penis pain started 1 year ago, these periods of pain and discomfort have completely dissipated for 2-3 month periods, which I would feel completely normal. My pain is only on the left side and moves around from base to glan and towards the underneath as well.

It's amazing how the pain can move around so much. An area that hurt one day won't hurt in the same place the next. Wierd eh!

Recently I battled through a flare up and found relief with celebrex. I would recommend you try Celebrex for your pain.

Oral strategies for peyronie's disease really aren't what you'd call short term. I'd say at a bare minimum pentox should be used for six months. Maybe in one month some positive changes are taking place (this could perhpas explain the pain reduction - either that or co-incidence), but stopping at that time really is a bad idea. You can potentially save yourself a llot of problems by sticking with it at this point, so I really do hope you're taking it again. Any chance of an update on your situation?

Hey guys,

My pain has not ceased.  It seems to have been getting progressively worse and worse.  I talked with my urologist a while back, have been taking pentox for a month and no relief.  My deformity has also been getting quite a bit worse in the past month or so, wheras before there was a slight dent now there is actual disfigurement.

Any other advice you can give me?  I am about 6 months into this, I'm really hoping this gets better.

Ox5555

For me the first 6 months were the worst.  Curvature went from almost nothing to almost 90 degrees.  The pain stopped at my 3rd Verapamil shots--my doctor had told me that if nothing else the shots stop the pain.  I also started taking pentox and ubiquinol at this time and either this (or the V) stopped the pain.  Curvature started decreasing at about the 9 month mark (by 15th months was about 45 degrees).

But I wonder if the thing that helped most was decreasing my stress level.  I had been stressed out of my mind in an impossible job situation.  Eventually I was laid off at my own request--and I've been seeing a counselor to work on a variety of techniques for dealing with stress.  I got a complete work up by a naturopath/md who also helped me regulate some things he thought were out of line.  I think all this coincided with making progress.

Not that anyone's experience will be the same as mine--I think we are all too aware of that. 

And I'm sorry.  This is a hard thing to deal with.

KAC

Sorry it's hard. 

Hi, my guy is on month 8 and the pain hasn't subsided yet. He's been on Pentox for about 2-3 months. He says the pain varies, but feels worse sometimes. A new lump seems to have formed too, but we have decided that in the acute stage, things are bound to be changeable, so we are holding on tight in this journey and trying to stay positive.

We are hopeful that the pain issue will begin to get better soon.

Lots of luck to everyone. x

I appreciate the responses.  I can deal with the change in appearance but it's the thought of lifelong pain that's really getting me down.  It does make me feel a bit better to know I'm not unusual to still be experiencing some pain even this far into noticing the problem.

Quote from: 0x5555 on December 09, 2011, 05:48:48 PM
I appreciate the responses.  I can deal with the change in appearance but it's the thought of lifelong pain that's really getting me down.  It does make me feel a bit better to know I'm not unusual to still be experiencing some pain even this far into noticing the problem.

I have pain as well, and its been 15 months I did however discover that if I leave the plaque area alone and when I say alone I mean not touching the area at all the pain is almost non existent. Even when I go to the bathroom I make sure not to touch the area as well. It seems anytime I touch the plaque area I start to feel a increase in pain and discomfort.

My pain was never terrible but I can still imagine what you must be experiencing.

I found ALC to help with pain in my case.  I took 500mg 3 times a day.

Good Luck

Guys are you talking about pain whilst flaccid or hard?  Most of my pain was whilst flaccid for about 6 months.  It really disrupted my sleep and I found the vibration of car journeys nearly unbearable.  I tried using ibuprofen gel directly on the plaque which helped.  The doctor said there was no harm in doing it.  The problem is that I have very sensitive skin and it caused me to develop eczema there.  I started taking ibuprofen tablets instead and this would keep the pain away for a few hours.  I have two plaques.  One ached and the other didn't.  The one that was causing the pain has now disappeared over a period of 12 months. 

I must chime in too.  I've got pain over 18 months.  If I don't touch or have erections the pain becomes less slowly over time until I have another erection.  There does remain sensitivity while flaccid that tends to wax and wane probably from when I have more blood flow, nocturnal rigidity, or mechanical stress from physical movement.  I'm essentially walking around on eggshells and don't exert myself.
When you get past 2 years of pain the question is what will they do with us?

Nothing but inactivity helps my symptoms.

What's the longest you've gone without an erection?  I'm going to wait a looonngg time and see if that helps things heal.  I figure everytime it stretches I am doing more damage (hence the pain) so if I give it some time hopefully it will get better.  I'm exactly the same as you - a few hours after an erection it's terrible pain.  Leaving it alone seems to be OK.

My pain is while flaccid on the same day I get an erection.

Pain in varying degrees for going on 6 years....sometimes manageable, sometimes excruciating.  Also recently had surgery for prostate cancer (successful thank God) and have some pain from that, so at this point it's hard to sort it all out. Then there are guys who never have any pain.  A strange condition that I wish I had never gotten...

I've been having pretty bad penile pain since my prostate surgery in September.  It's pretty hard to sort out whether the pain is due to Peyronie's or after effect of the surgery or a combination of both.  I saw my surgeon yesterday and he gave me a prescription for Mobic (meloxicam...generic name).  It's a prescription NSAID.  Just wondering if anyone here has tried it and what were your results or your opinion on this drug.  I took one last night with dinner and starting around 9:00 up until the present time (2:19), I don't seem to be producing as much urine as usual. I'm drinking lots of water, but so far today it hasn't seemed to help.  I just read that the half life of Modic is about 20 hours, so hopefully it will be out of my system soon.  I also got very little sleep last night, which is another listed side effect (difficult sleeping).  This drug seems to have a lot of side effects and I'm leaving it off tonight to see if things get back to normal.  If you have any knowledge of this drug please post.  Thanks. Fred..

Fred:

OK, I have used Mobic (meloxicam) for several years for relief of osteo arthritis. My ortho surgeon prescribed it after some knee surgery that has lingered on until now. Recently, I quit taking the Mobic due to a stomach acid reflux problem.

My gastro doc said that Mobic had caused the stomach flare up and it would take time to heal. He put me on an acid reflux med which did absolutely nothing toward helping the problem. I am now taking another acid reflux med to see if it will reverse some of the problems.

Anyway, I am relating the above in order to point out that Mobic/meloxicam can and will cause several side effects. I was instructed to take it in the morning before breakfast in order to have a food buffer between time of taking and eating, etc. This is supposed to cut down on the reflux problem.

Another item that I need to relate is that I am also taking Lasix after open heart surgery. This provides many urinations during the day and kind of offsets the "dryness" problem with the Mobic.

The above may or may be of value to you in taking the Mobic. You should ask the doctor who RXd the Mobic about changing the time of day taking it in order to relieve the urination problem.

Old Man

Quote from: Old Man on January 10, 2012, 04:00:14 PM
Fred:

OK, I have used Mobic (meloxicam) for several years for relief of osteo arthritis. My ortho surgeon prescribed it after some knee surgery that has lingered on until now. Recently, I quit taking the Mobic due to a stomach acid reflux problem.

My gastro doc said that Mobic had caused the stomach flare up and it would take time to heal. He put me on an acid reflux med which did absolutely nothing toward helping the problem. I am now taking another acid reflux med to see if it will reverse some of the problems.

Anyway, I am relating the above in order to point out that Mobic/meloxicam can and will cause several side effects. I was instructed to take it in the morning before breakfast in order to have a food buffer between time of taking and eating, etc. This is supposed to cut down on the reflux problem.

Another item that I need to relate is that I am also taking Lasix after open heart surgery. This provides many urinations during the day and kind of offsets the "dryness" problem with the Mobic.

The above may or may be of value to you in taking the Mobic. You should ask the doctor who RXd the Mobic about changing the time of day taking it in order to relieve the urination problem.

Old Man

Hi Old Man....Yes, I just took the one and had mild indigestion and the urine production problem....not going to take it any more. Thanks for the info.....Fred

I was diagnosed with Peyronies in August, but have had symptoms since May, so I am at least 8 months into the disease. I had pain for about six weeks, then it went away. It came back in November for a couple weeks, and then was gone till about a week ago. Now, after an erection/sex, there is some pain and tenderness afterwards for a day or two. So two questions on this;

Does experiencing pain mean I am still in the acute phase?....

Since I am now feeling pain, does that mean the disease is still getting worse 8 months in, i.e...more plaque being formed?

Thanks for any insight and guidance.

In my opinion, yes, you are still in the acute phase. In my case, more plagues continue being formed up to 24 months from the first Peyronie's symptoms.
James

James, thanks for the feedback. May I ask what treatment or meds were you taking during your 24 month acute phase?

Unfortunately and badly I just waited for a miracle (that don't come). I am sure my bad situation is because I have just waited. Don't wait, and don't wait to much for the doctors. Have many thinks to do like taking vitamin E and supplements, if you will search the forum you will get to conclusion what is best for you.
What other symptoms do you have except the pain>
James

James, I was fortunate to have a Peyronies specialist at a nearby hospital. I saw him 4 months into the symptoms, and have been on Pentox since. I have Verapamil injections coming up soon as well. I am 8-9 months into having the disease. Right now I have plaque on the sides, so I have some hourglassing. Not extreme yet, but will be if the disease progression continues.

I was not fortunate to find a Peyronie's specialist even in a near country. All the answers to my emails was that I need a fist visit to see what I have at around $US 1,000, just ultrasound $250 when here locally I can make for $25!!! All are "specialists" in degloving and cutting.
My actual uro is going with me and learning the subject.
Good luck with the Verapamil injections. What your doctor think about the Verapamil success?
James

James, regarding Verapamil, the doctor said it might work or might not, but that it would not make things worse. So it's worth trying. I will post on this board (under the Verapamil topic) any results. I get shots this week.

Good luck to you as well.

Charlie44:

Suggest that you read more posts about this subject on the many that are included in the verapamil board. The jury is still out as to whether or not these shots do help or make things worse.

In my personal case after 12 of the injections there was absolutely no positive action, only negative. Each and every one of the shots caused more nodules, bruising that took weeks to go away and in general were bad overall. This may or may not be the outcome for every individual though.

The above is just my considered 2 cents about the subject!!

Old Man

Old Man, yes, I've read the Verapamil threads and know that there is mixed results on VI. That is why the first question I asked the Uro was "can this make things worse?"....he said no. Now, I know he can say whatever he wants, but maybe also some of the results are due to the doctors skill in administering the shots, etc...who knows. I do know that the one big success story by the poster "Ek, I think is his board name" is by the same doctor I have (Carson). So to me, it's worth me trying this procedure....otherwise, I am not left with any other path besides Pentox which hasn't done anything so far.

As we all know with Peyronies, nothing is guaranteed, and there is risk in a lot that we do. I will post and update people results from my shots in the Verapamil thread.

Charlie44:

Touche'. I tried.

Old Man

Am I crazy to think that the injections sound a lot like fractures - like you're puncturing the corpus cavernosum, blood leaks out and the resulting nodules are from scar tissue that forms. 

I know that when I scar it's usually a keloid (having moles removed for example), I suspect that is how my scar formed in my penis.  I can only assume that punctures from a needle might scar the same way.

0x5555
No, you are not crazy, is a logic thinking, but if we think like that, any injection therapy including Xiaflex an any surgery will do the same damage.
Your scar in your penis formed following an injection therapy?
James

No, I it was an injury from trauma.  I didn't have classical symptoms of a fracture but I think that's what happened.

Ok this was just weird. I recently found a way to have masturbation without pain (OR SO I THOUGHT)
because today i did it successfully using a sex toy and then i thought that great "I didn't get any pain this time"
and yeah i didn't get any pain.

but then after taking a shower...and 20 minutes after the masturbation..I was sitting down flaccid and started getting sudden sharp pains. This is actually the first time i get pain while flaccide. It usually just happens when i get hurt while masturbating with an erect penis.

It was pretty painful so
But oh well. I took a hot bath and took advil to try to relieve it . It seems it calmed down a bit cause i haven't had pain in a few hours but i'm still worried i could get pain.

My question is , once you get a hard pain from masturbation....is it good after a while, to induce slight erections to try to at least placebo yourself to feel better. Because if it doesn't hurt when erect, at least you feel good and you start forgetting the pain.

That's how i've usually done it. I get sudden pains from mastrubation and then they last a while.. i use Adult DVD's to get erections and then it makes me feel better cause the blood flow makes me feel like it gets a bit healed/patched.

I've been hearing from many websties, that there's no solution so Is creating erections the only way to cope?
But at the same time i worry cause if i was hurt, then erections may create pain too.

I have flaccid pain, the that has shortened the pain time after sex is to sleep on my back or in a recliner. Sleeping on your side will aggravate the plaques by having your penis on it's side or squeezed by your legs. Absolutely do not lay on your sides or stomach!

There are options for pain: pentox, ibuprofen, diclofenac sodium gel, etc.  be sure to check out the survival guide:  Peyronies Survival Guide - Information for New Members - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,3180.msg44057.html#msg44057)

I've had painful erections going on 3 years now. Very noticeable hourglass on the left side and large indents, especially after I masturbate. My penis looks completely deformed sometimes. I could live with the hourglass but the pain is so annoying and irritating. Getting an erection.... something that is supposed to be fun and enjoyable is now just a constant reminder of this miserable F^@$!ng disease. Someone described it as a tight rubber band around your dick and thats exactly how my pain feels, only on one side though. At my wits end with that crap.