PAIN related Q&A

[newguy]

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?

[chiguy]

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.

[jackp]

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

[Woodman]

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

[Iceman]

woodman - have you tried pentox??

[George999]

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

[newguy]

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.

[ducard]

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  

[chiguy]

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.

[elysianfields]

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!

[cowboyfood]

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.

[newguy]

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.  

[elysianfields]

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!  

[Fred22]

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

[Fred22]

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

[Fred22]

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

Fred

[elysianfields]

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  

[newguy]

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.

[Fred22]

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

[Old Man]

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

[elysianfields]

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?

[Fred22]

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

[Fred22]

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.

[newguy]

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.

[Woodman]

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

[Fred22]

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

[newguy]

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.
 

[elysianfields]

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.

[Skjaldborg]

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

[Fred22]

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

[newguy]

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.

[LWillisjr]

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.

[newguy]

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.  

[Skjaldborg]

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

[Woodman]

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.

[Woodman]

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

[Fred22]

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  

[Old Man]

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

[Fred22]

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

[newguy]

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.  

[elysianfields]

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.

[Fred22]

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

[elysianfields]

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.

[Bertie]

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.

[MikeSmith]

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.

[Old Man]

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

[Lennyman]

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

[MikeSmith]

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.

[LWillisjr]

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.

[MikeSmith]

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.