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Author Topic: Peyronies for about 10 months now - need treatment plan advice  (Read 6131 times)

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hopeful_one

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Peyronies for about 10 months now - need treatment plan advice
« on: February 20, 2011, 07:03:02 PM »

I've had Peyronie's for about 10 months now. Below is my timeline of progression and some questions. I would really appreciate any insight and feedback you all can give me. I'm 40 and very physically fit and healthy except for this horrible condition that I now have.

4/7/10 – Sharp throbbing pain during erection starts. I don’t have any pain when flaccid at this point. I don’t remember any injury that may have caused this, but had been going through unprecedented levels of stress in my life for a few months at this point.

10/12/10 - Sharp pain during erection stops

10/16/10 – Slight burning pain while flaccid starts

10/26/10 - Have a 1 minute long ultrasound at the Cleveland Clinic in south florida that only determined that blood flow is good. I was pretty dissapointed that they didn't examine any scars or inflammation but I think the plan was to get me out of there as quickly as possible.

10/26/10 – at this point I have no major deformity, just a slight dent a ½ inch before the glans on the left side. 2 Peyronie's spacialists tell me that I should get out of this pretty much unscathed.

I've been super stressed for several months at this point and take time off from all sex, masturbation, etc.

12/15/10 – During erection I notice significant distal tapering. My two original scars are causing this: 1) runs circumferentially from top (0 degrees) to the right (90 degrees) about ½ inch before the glans and 2) runs circumferentially from top (0 degrees) to the left (about - 45 degrees)  also about ½ inch before the glans. It's time to freak out again!

12/26/10 – Start taking Pentox, Arginine and Viagra when I can tolerate it as it usually leads to pain the next day.

At this point can have an erection without much pain. Pain is more felt while flaccid, or next day after using v at night.

1/15/11 - Notice new scars?/inflammation? Left and right, about 1 inch before the glans closer to the body from the original scars.  Also, I notice another scar?/inflammation? near the base, left side. All scars/inflammation are now much more noticeable. I’m not sure if they are much more inflamed, or if I’m much better at noticing them, probably both. Distal tapering combined with more swelling before the tapering.

At this point can have an erection without much pain. Pain is more felt while flaccid and after masturbation, or next day after using v at night. When flaccid and changes state slightly filling with a little blood, I have some pain.

2/13/11 – Little or no pain during the day when not using VED or V. Still have pain when there is any contact with anything.


2/20/11 – moderate burning pain during the day when using V after two nights in a row. Pain when using VED

So, to summarize, I’m 10 months into this. At this point I have 2 definite major scars that are causing distal tapering starting a half inch before the glans, more on the right side as that scar is larger. I also have 3 other points of either inflammation and/or scarring on both sides. I probably lost at least a half inch of length at this point if not more. I don’t have much if any curvature that I didn’t have before this all started, but I have scars on both sides on multiple locations that I feel are pulling on each other and causing more progressively more damage. This has me very freaked out as I don’t know when or if I can exit the acute stage and reach some stability.

My meds/supplements/diet are:
Pentox (400 mg x 3) started 7 weeks ago
Arginine (1 g x 3) started 7 weeks ago
Ubiquinol (100 mg x 3) started 1 week ago
Fish Oil / Omega 3 (1 g x 3)
Vitamin D3
Curcumin with bioperine 875 mg x 2
Extreme anti-inflammatory diet (all organic)

Question: does my supplement plan above look right? Is there anything I should add to it?

I’m taking Viagra when I can tolerate it but I usually end up having pain during the day after a couple nights in a row of this as my blood flow is very good and erections are strong. The pain during the day after Viagra usage is a burning pain sort of like a UTI.

I have the VED and tried very gently with the protocol but also notice pain later in the day when I do that. The pain during the day after VED usage is a burning pain sort of like a UTI.

Concern: I’m not sure if it’s a good idea to continue taking Viagra or using the VED if it causes pain during the acute stage. It doesn’t feel right to me. It feels like I may be damaging things further. I have multiple areas of infllamation on both sides and it seems like they are battle against each other, pulling and tugging away.

I was much more positive a few weeks ago when I came up with my user name hopeful_one but now after taking Pentox, and living on such a radically healthy diet for 7 weeks running and still continuing with progression in inflammation and pain I’m feeling pretty despondent and depressed right now. I don’t feel like working, going outside, talking to people or doing much of anything lately. I really need some good news soon.

Question: how long does Pentox usually take to begin showing results in the way of moving towards stabilization of Peyronie’s and reduction in plaque?

Sorry for the long post! Thanks for any input you guys can give me!
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George999

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #1 on: February 20, 2011, 08:08:56 PM »

You are certainly doing all of the right things.  If you are continuing to have pain, I think I would hold off on the VED for a while until things stabilize.  When that will happen is really not predictable, since every case is different.  Other than that, If you stay the course, you should eventually get relief.  Seven weeks is but a moment in time in terms of Peyronie's.  So keep up the good work and it will eventually pay off.  - George
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newguy

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #2 on: February 21, 2011, 10:17:53 AM »

It may be somewhere along the line that there was slight reinjury. It's difficult/impossible to say really. You really do appear to be doing your very best in a bad situation and I can appreciate why it would result in you feeling the way that you do, right now. Adding Ubiquinol was a great idea, and who knows, maybe over the coming weeks it will result in improvements in the pain etc. I echo your thoughts about pentox, it typically is a treatment that works over many months to combat these processes, so whatever you do stick with it. I think you're doing everything right in terms of oral treatments, as you you haven't been taking Ubiquinol or pentox for long, it may be that progress is a little further down the line.

If you feel that particular treatments are resulting in a worseing of your pain, then maybe you're at too delicate a stage for them to be helpful for you. VED has helped many men, but Iif you do feel that it's causing pain whenever you use it, however gently, maybe taking a break from it isn't a bad idea. As for viagra, how are your erections without it?
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hopeful_one

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #3 on: February 21, 2011, 10:18:38 AM »

You are certainly doing all of the right things.  If you are continuing to have pain, I think I would hold off on the VED for a while until things stabilize.  When that will happen is really not predictable, since every case is different.  Other than that, If you stay the course, you should eventually get relief.  Seven weeks is but a moment in time in terms of Peyronie's.  So keep up the good work and it will eventually pay off.  - George

Thanks George! Since none of these Peyronies specific treatments nor the anti-inflammatory diet are kicking in yet and helping with the pain and inflammation, should I rely on a good old fashioned NSAID like ibuprofen? If so, how much and how often per day? I'm worried about continued inflammation causing further damage so my goal is to exit the acute stage as soon as possible, and then work on gaining back size/shape later with the VED, viagra, etc.

hopeful_one
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GS

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #4 on: February 21, 2011, 10:19:18 AM »

hopeful_one

The problem with Peyronies Disease is that it can happen overnight, but it can take forever to go away.  That old saying about patience being a virtue must of been originated by a Peyronies Disease sufferer.

As George says, you are doing all the right things.  Maybe take some aspirin for a while to help with pain and inflammation.  I have had Peyronies Disease for 2 1/2 years now and pain was an issue for the first year or so with me.  It did finally go away.

When you are in pain, it is very hard to be positive, so don't be too hard on yourself about getting depressed.

GS
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hopeful_one

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #5 on: February 21, 2011, 10:51:37 AM »

It may be somewhere along the line that there was slight reinjury. It's difficult/impossible to say really. You really do appear to be doing your very best in a bad situation and I can appreciate why it would result in you feeling the way that you do, right now. Adding Ubiquinol was a great idea, and who knows, maybe over the coming weeks it will result in improvements in the pain etc. I echo your thoughts about pentox, it typically is a treatment that works over many months to combat these processes, so whatever you do stick with it. I think you're doing everything right in terms of oral treatments, as you you haven't been taking Ubiquinol or pentox for long, it may be that progress is a little further down the line.

If you feel that particular treatments are resulting in a worseing of your pain, then maybe you're at too delicate a stage for them to be helpful for you. VED has helped many men, but Iif you do feel that it's causing pain whenever you use it, however gently, maybe taking a break from it isn't a bad idea. As for viagra, how are your erections without it?

Hi newguy,

Yeah, Im thinking there was probably a reinjury in September that made itself know later, too bad for that. Nocturnal erections are very strong with 8 mg of viagra (I take a 50mg and split in 6). They are probably too strong as I have to get up a couple times at night to use the bathroom and make sure the erection goes down. I was thinking about taking a break from Viagra for another week and then maybe trying a mini dosage of cialis. Maybe it would have less of a big impact during the night and more of a spread out impact over the entire day. Please let me know what you think about that idea. Thanks!!

hopeful_one
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hopeful_one

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #6 on: February 21, 2011, 10:53:18 AM »

hopeful_one

The problem with Peyronies Disease is that it can happen overnight, but it can take forever to go away.  That old saying about patience being a virtue must of been originated by a Peyronies Disease sufferer.

As George says, you are doing all the right things.  Maybe take some aspirin for a while to help with pain and inflammation.  I have had Peyronies Disease for 2 1/2 years now and pain was an issue for the first year or so with me.  It did finally go away.

When you are in pain, it is very hard to be positive, so don't be too hard on yourself about getting depressed.

GS

Hi GS,

I'm concerned about the future. I hear that pain usually goes away after 12 - 18 months but what typically happens after that? Do people usually reach a comfortable point of stability? I can't even wear jeans right now because they result in pain during the day when sitting down. Will that sort of delicateness eventually go away also, sometime after the pain is gone? Once again, I'm talking about in most cases, not the worst cases. Thanks for your support!

hopeful_one
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newguy

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #7 on: February 21, 2011, 11:31:28 AM »


It can be dangerous to have erections that last for hours on end (priapism). Not that I'm saying that yours are like that, rather that if they are difficult to get rid of, it might suggest that you should reduce your dosage, or stop taking it entirely if you feel that your erections are strong enough on their own.
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elysianfields

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #8 on: February 21, 2011, 12:14:35 PM »

hang in there.. you are taking the right approach. I'm 2+ years in and still dealing with pain but at a much lower level than at its peak that you describe (contact with clothing being painful, not being able to sit, work out etc) I pushed through all that pain.. and today its still there but "manageable". The only addition I'd recommend as other have is Ubiquinol. It took about a month to kick in but now its the only thing I'm taking 3x a day. I wish I'd known this 2 years ago!

As for the depression. You are not alone. I had to be unbelievably strong to get through this. I have only discussed it with one friend bc she is a Dr. Otherwise I didn't see the point in telling anyone as really they couldn't help take the pain away.. but it has got better to the point where I have a great sex life with my current girlfriend. Some days its not the 1st thing on my mind, maybe its 2 or 3.. but I do feel that it will not be with me forever.. and you shouldnt either..
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George999

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #9 on: February 21, 2011, 12:40:42 PM »

I would echo newguy on the Viagra.  You may need to cut back on it or drop it completely.  You NEED TO HAVE ERECTIONS at night, but not necessarily extreme ones.  So if you NEED the Viagra just to achieve erections, fine.  But if you are taking it ONLY because it is part of the legendary PAV cocktail, personally, I would drop it.  I have never taken Viagra and I dropped the herbal analog, Horny Goat Weed, years ago.  Another thing I would look at closely if I were you is your serum glucose and insulin levels.  If your fasting serum glucose level is over 86mg/dL and/or your fasting serum insulin level is over 5µUI/ml, that is an inflammatory factor.  I realize that you have a great diet going on, but even so, the numbers tell all, and sometimes everything isn't what it seems to be.  - George
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blackseal

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #10 on: February 21, 2011, 10:18:45 PM »

Hi Hopeful_one.  I'm at about the same stage, though I just noticed my Peyronies Disease oct 2010.  Am taking a similar cocktail of drugs as you are.  I tried viagra and hated it.  I switched to cialis and it works great for me.  I take a 20mg pill and cut it into 5-6 pieces, taking about 3mg-4mg a day in the morning.  the only pain I noticed a few times was lower back pain, but an alleve took that away quickly.  And have not had that after the first week or two.  So I would try the switch from viagra to cialis.  Also since it is longer acting, it conceivably could offer "continual" improvement....Good luck!!
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hopeful_one

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #11 on: February 21, 2011, 11:00:02 PM »

newguy and George:
What you guys say makes sense, I'm dropping the viagra for now and may replace it in a week or so with a mini dose of cialis during the day to eliminate the risk of priapsim at night while I'm sleeping. Thanks!

elysianfields:
Yeah, I just started Ubiquinol a month ago. It's a relief to hear that you're able to have great sex now after dealing with Peyronies. I was starting to think that I may never have that again and that's really a miserable thought to have in your mind. Yesterday was a meltdown day for me, but today I took some ibuprofen and pain was pretty minimal so my mood was much better. Of course, the minimal pain today came with wearing really comfortable pants and working from my sofa with a laptop. Thanks for the support!

blackseal:
Yes, I'm going to drop Viagra and try a small dose of Cialis in a week or so. I like the idea of Cialis not being as intense as Viagra, but having an effect spread throughout the day. Thanks for the advice!
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hopeful_one

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #12 on: February 22, 2011, 12:22:51 PM »

George:

I'll be going to see a primary care doctor soon. Is there anything I should be tested for other than serum glucose and insulin levels? Thanks!

hopeful_one
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George999

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #13 on: February 22, 2011, 08:48:25 PM »

From an inflammation perspective, Vitamin D levels would be the other one I would get checked.  They should be 50-70ng/mL.  The doc will be happy with far less than that, but the research shows that over 50 is where you want it.  - George
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hopeful_one

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Re: Peyronies for about 10 months now - need treatment plan advice
« Reply #14 on: February 23, 2011, 11:37:14 AM »

From an inflammation perspective, Vitamin D levels would be the other one I would get checked.  They should be 50-70ng/mL.  The doc will be happy with far less than that, but the research shows that over 50 is where you want it.  - George

thanks for the info George, I'll add that to my list of things to get checked
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