14 months of Peyronies Disease, maybe

[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.

[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

[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?

[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

[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

[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.

[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 

[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

[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

[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!

[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. 

[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.

[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!