I started last year with very small "distal" spot and not much curve. This got a little worse by moving to the other side just under the glans, hard "cords on either side of urethra, and pain went away. And then a couple of months ago it became a lot bigger area further down the penis that I can only describe as a swollen area that sort of increases the girth just below the glans, and seems to make the head less likely to become erect. Almost like I got hit with a hammer. It is no longer a small hard area but fills the whole penis with a "denser" area near the end. A slight downward bend upon erections, hourglassing, hard flaccid, in short, things seem to have gotten a lot worse fairly quickly. Overall I don't seem to have lost more than maybe 1/4" in length and the curve is still minor as I see it. The shape is getting oddly swollen but I don't think it would scare anyone just yet. Since this last progression, the pain has also come back. It's not excrutiating and is ok until a partner is "levering" for their own pleasure or angling or rotating their hips, etc.
I take citrulline, arginine, co-Q-10, ALC, Cialis, and stopped taking Pentox as what I'd read indicated it's unlikely to help, and it made me feel sick and get headaches. I use a VED about 3 times a week and sometimes wonder if I should stop, or if that's made things worse. I am very gentle with it and don't feel pain or notice broken capillaries or anything.
So it appears I'm going to keep getting worse, and at this point don't really want to know what comes next. I can still get erections, but for various reasons including the description above, sex with women has become less pleasurable and mostly just an anxious experience. Probably will ask that question in a different thread.
Once you know things are getting worse, do people start considering xiaflex or other options as a way to avoid it becoming completely deformed or unusable? So far what I've read seems to indicate Verapimil and Xiaflex both seem fairly ineffective for a lot of patients. Any advice? My depression and overall life quality has gotten dramatically worse since this began, I feel like my life has a very limited future if this continues. I have a uniquely isolated existence with no support system. But I continue to just try not to think about it and hope it stops getting worse. Seems like to survive it I have to ignore it, as the thought process often includes a nagging sense that I will one day give up, if that makes sense.
Sorry you're dealing with this. If I could ask, what did you read that gave you to believe Pentox is unlikely to help? I think you're missing one of the best tools we've got in this fight.
Nemo
Have you seen a "good" uro?
You have support here hang in there.
BF
I've seen the most "specialist" uro in the area for Peyronies, he was willing to prescribe Pentox, he explained the science on it was pretty unconvincing, but had said some patients "believed" they'd had some results. If there is a study I could read that shows how it helps, I might consider taking it again. I already take a blood thinner and Cialis so in my estimation the Pentox might not be doing much more, but it's such speculation. The potential side effects and long-term implications of this med aren't what I'd call trivial, I experienced headaches, stomach problems and joint aches that got pretty bad.
I admit don't believe in taking things that might cause more detriment than benefit if there just isn't any compelling evidence.
Ralph
Regarding Pentox:
Smith et al. 2011, Pentox treatment and penile calcifications in men - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,2070.0.html)
Pentox study from Iran - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,1004.0.html)
Pentox - Dr. Lue Case Study / Levine mentions his use of Pentox - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,772.0.html)
Online review article by Tom Lue - excellent (Has good Pentox support for your - Peyronies Society Forums (https://www.peyroniesforum.net/index.php/topic,723.0.html)
Regarding VED, I don't think that 3 times a week is enough. In my opinion 6 to 7 days a week during a long period will give results.
Can I know who is your good urologist/specialist?
James
So what is VED for? Seems to me if inflammation is a problem, inflating the tissue may not be a good way to help it? Is VED mainly for straightening? Or for stoping more inflammation? If I am getting erections, and curve isn't the biggest problem yet, why is VED necessary?
Pentox makes my feet tingle, stomach hurt, joints hurt. I noticed things got worse in terms of mass size when I took it, but we have no way to know what's causing things to improve or worsen if we aren't doing a study.
I guess what I mean with all this is how can anyone tell if something is working? And why are the uros so sure nothing works? I see one locally that's on the list. I'd rather not disclose my location as this board is open to the public eye. Like I said he didn't seem too convinced pentox works but that a few patients thought it might have. I'll bring a study to him and see what his response is but i can't see why these guys would be so reluctant to believe there's any treatment... Just makes you never want to go back.
Ralph
You are asking questions, but from your posting can understand (I maybe wrong) that you are not reading the answers.
James
Yeah, maybe I don't see these studies as answers. As I understand it these are small sample sizes, a single case study, and not US studies. Is there any proper US/FDA study? Sorry if that's a bad question, but many doctors consider these types of studies cited here to be inconclusive. One uro I've seen has seen a lot of these reports and has seen all kinds of claims come and go over his 30 year practice. I want to believe there are hopes, but I also believe these kinds of things *can* make you worse, or worsen quality of life with side effects, so I'm trying to get solid scientific information. My experience with doctors over the years has been that the experienced ones tend to see fads come and go, and don't always believe in the latest new trick. That said, I really want to know if there is a verifiable reason to try these kinds of therapies other than "it can't hurt" because like I've said I believe it's possible that it *can* hurt, just as any med or injection or surgery can.
I'm also asking if anyone knows what the use of a VED is really aimed at, reducing curvature/maintaining length or keeping plaque from advancing? And how anyone can tell if any of these chosen therapies are working.
Ralph, there just aren't any large studies on Pentox and Peyronie's, primarily because so few men (comparatively) suffer with it and there's not a lot of research directed at it in general.
Bottom line is if you're suspicious of or worried about Pentox, or just don't like pink pills, don't take it. It's your call. If it's a fad, it's one that's gaining momentum over the years, not losing it. Seven years ago when I tried to get a GP to prescribe it, he did so only really guardedly, then changed his mind and wouldn't refill the prescription (scared from a liability standpoint of using a drug off-label, I'm sure. He mentioned the Phen-Phen controversy.)
But in 2015, both my GP and the Uro he sent me too agreed to prescribe Pentox and felt it was the best prescription available. To me, combined with what I see here, it's much more accessible these days, and I think that's good. The science behind it is much more convincing than Vitamin E, which used to be all we really had.
Use your judgement. The studies posted here are about the only ones I know of. If it's not for you, it's not for you.
Nemo
Ralph
I understand that Dr. Tom Lue and Dr Levine are not US doctors in your eyes. :(
So from where they are?
James
Sorry, I guess the issue is sensitive. I was wondering about studies because foreign studies appear for all kinds of drugs all the time and I just don't know if I personally trust these kinds of things. Sorry if I offended anyone. Thanks for the responses.
Ralph, your interpretation of my answer is wrong!!!
Dr. Tom Lue and Dr Levine are two of the leading Peyronies specialists!!
I suppose you really don't read the answers to your posts and if yes, very superficially.
Personally, I will not bother myself anymore to understand your posts and to answer to you.
James
Hey Ralph,
The U.S. is the leading country on Peyronie's research, Lue and Levine are in the US and their research can be found with ease, on traction, Pentox, etc.
That being said, we have stated it many times but I'll say it again, every man responds differently to different treatments. Do not use Pentox if you are bothered by it, I don't take it and some others don't either.
It's important to understand (and you probably do), that knowledge regarding any disease is backed purely by studies, moreover very limited studies. They are not answers, but they are all we have and all we will continue to have.
I only take Pentox sporadically too. I avoid it, especially in winter time, because it has been shown to be an immune system suppressant, which I don't want with all the colds and flu around at this time of year.
There are other side effects too. Some people experience increased anxiety symptoms. Others gastric problems. Personally, it has helped with pain and has certainly stopped the disease from progressing. It is one of the better weapons that we currently have to fight this with, but if it's not for you........
Thanks Jonbisinpain, I have had the immune response, just recently. And stomach issues. Actually just about every side effect listed I ended up with in some form it seemed. Anyway that's not science just a hunch. I keep trying to go back on as I feel like I don't want to not take something that can help this, as it does seem to just get worse and worse. James1947 I'm sorry you think I'm not reading responses. Several of the studies available are not studies with real sample size or substantial data but some are even single case studies, and some do come from outside US. I was just asking if there were FDA studies. I realize it's a relatively rare condition but yes, I really do hope better research is funded in the future.