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Interviewer: Peyronie's disease is a very treatable condition, but you have to seek help in order to get that treatment. Up to about 13 percent of men might have it. And those numbers might even be higher because a lot of men just don't even talk about it. Urologist, Dr. Alex Pastuszak is an expert on Peyronie's disease, also called PD, and has received an NIH grant to investigate the genetics and molecular mechanisms of the condition.

So let's talk about this disease because I did a quick internet search. Five minutes later, I was in the black hole. There's a lot of stuff out there. Let's clear up the misconceptions. Let's get the good information. So a couple of issues first, acknowledging that a man has it and then getting help for it. Those are kind of the two big things.

Dr. Pastuszak: Yeah. I think one of the big things with Peyronie's disease that brings guys out of the eaves really is knowing that it's highly treatable and knowing that a lot of other men actually have it, and that they really shouldn't be ashamed to see somebody about it because there are a lot of us that can actually treat it.

Interviewer: Yeah. It comes to shame, you think, is why men don't seek help? Because you've told me that a lot of men don't seek help, even though it's a very painful condition and not much fun.

What Is Peyronie's Disease

Dr. Pastuszak: So I'm going to nerd out just for a second, but up to 50 percent of guys with Peyronie's disease can actually have clinical depression because of it. So it's not just shame, but there's a lot of psychological issues that can come with having just what somebody can consider penile curvature.

Interviewer: Okay. So, first, acknowledge that you have it, realize that you have it. Do you find most men that have it actually do know, so we don't really have to talk a lot about what the symptoms are? Is that worth going into?

Peyronie's Disease Symptoms

Dr. Pastuszak: Yeah. That's actually a great question. So most men who have started to get curvature, know that they have it. Soon as they have an erection, they have curvature, they're like, "Wow. That's different than it was X time ago." There are some guys who'll come and see you and say, "You know, Doc, I have some pain in my penis, either when I have an erection or without that." And then you tell them that they need to be on the lookout for it, but they may not have it by definition yet.

Interviewer: Okay. So it sounds like there are two kinds of things to look for. A curvature, how severe is the curvature?

Dr. Pastuszak: It can be just not normal for the guy. That's all you need.

Interviewer: All right, and pain. Does pain always accompany the condition?

Dr. Pastuszak: No. It doesn't always accompany it. And the other thing to look for is sometimes guys find like "a knot" in their penis, a lump. So lump, bump, or curve is sometimes how we refer to it. And they find that troubling. They think, "Oh, wow, you know, hey, I've . . . Oh, shoot, you know, maybe I have penile cancer," and they come running. So those three things really are what bring men into the clinic.

Interviewer: And it's usually men around 50, 55?

Dr. Pastuszak: So the average age is 55. That's nationally. But there are plenty of younger men who have that and plenty of older men as well. I see men as young as in their 20s who have it.

What Causes Peyronie's Disease?

Interviewer: All right. And it's caused by scar tissue building up?

Dr. Pastuszak: That's right. By and large, technically, it's an abnormal scar tissue formation in the penis.

Interviewer: And that's that lump or bump that you start to feel initially?

Dr. Pastuszak: That's exactly right. And then that can sometimes increase in size and that curvature can stay the same, get better or get worse.

Interviewer: All right. And is it something that most men do . . . And we kind of did touch on this, but does this progress pretty quickly, generally, the curving, or is it so slow that you might just one day go, "Look at that, that's not right"?

Dr. Pastuszak: So everybody's a little different when it comes to how quickly they progress. I've had guys come in and say that, you know, within two weeks of feeling pain or getting a bump on their penis, or whatnot, they had really bad curvature. And there are other guys who come in and say that it's been months or years, and it continues to get worse or has been the same for a long time.

Interviewer: So, when you start noticing those initial symptoms, is it pretty important to get in right away, or is it something you can kind of sit on for a bit?

Dr. Pastuszak: So I think it really depends on how important it is to you as the patient, because a big part of what defines what we as doctors end up doing in terms of treatment and treatment recommendations is how much it actually bothers you.

Interviewer: Okay. So if the guy's not feeling any pain and it doesn't bother him, then it's not something you necessarily recommend a patient come in for, or is it going to cause problems eventually?

Dr. Pastuszak: So that's probably going to be the million-dollar question today, to some extent because we don't know, definitively, whether it causes other problems. Some of my research has suggested that it can cause other problems, but we haven't linked it causally to the problem yet so we don't know for sure.

Interviewer: If you seek treatment more quickly, is it more likely you're going to have a successful treatment?

When Should You Get Treatment?

Dr. Pastuszak: Ultimately, you need to seek treatment or the best time to seek treatment is when your curvature is no longer getting worse because that's what's considered the stable phase of the condition. And that can take anywhere from six to 18 months to get to, at least based on the research that we have right now. So, you know, if you're treated when you're stable, great. There's a little bit more of a risk that you take if you're treated when you're in what we call the active or developing phase.

Interviewer: Oh, okay. All right, let's talk about treatments. There are four different categories, you told me. Let's just go ahead and go on down through those.

Peyronie's Disease Treatment

Dr. Pastuszak: Okay. I'm going to go ahead and start with traction therapy. So, to take a step back, the four categories are:

1. traction therapy,
2. oral therapies,
3. injection therapies, and
4. surgery.

Home Treatment

Okay? So with traction therapy, this is something that men can do at home. And I'll tell them upfront, "If you don't want a doctor involved in your treatment right now, then I'll tell you where to get this device. You can go get it online, and then you can start your traction therapy." In terms of efficacy, we don't know exactly how effective it is. There are some early studies now that show that it can help improve curvature, but the jury's still out.

Interviewer: Yeah. I'm looking at one of these devices right now. They don't look fun. It looks like a torture device kind of.

Dr. Pastuszak: So you're probably looking at RestoreX or what's called the Andro-Penis. These things have great names.

Interviewer: Of course, they do, right?

Dr. Pastuszak: The one I actually probably recommend the most to my patients is called the Penimaster PRO. That's right, you can stop and giggle. It's okay.

Interviewer: Well, I mean, come on. This is an embarrassing enough situation and some company named it that?

Dr. Pastuszak: Well, yeah. Except the bottom line is that the thing works.

Interviewer: Okay. Well, you just have to get over . . . Okay.

Oral Therapies

Dr. Pastuszak: But they can be effective. All right. Moving on to oral therapies. So I actually don't use oral therapies very much, and we don't use them very much in our practice here in Utah because our professional society, the American Urological Association, in 2015, came out with guidance that they don't really work. Well, let me back that up, that there's no evidence that they work right now. That doesn't mean that some of these don't work, it's just that we can't prove it.

Interviewer: Got you.

Dr. Pastuszak: Okay? So I would just caution men who may be considering oral therapies, because some of these can be nutraceutical stuff you get over the counter, to think twice before they use it just based on the evidence that we have.

Interviewer: Are there some side effects that you're worried about? Because I would consider, you know, there's no evidence to show that they work, but maybe there's in some cases they do, then I have to look at, "Well, what are the drawbacks if I do take this?" Are there some drawbacks to these oral therapies if a man did decide to try them?

Dr. Pastuszak: So, ultimately, anything you take, that has drug potential, can have side effects, so that's another thing to consider. It's a good point.

Injections

Interviewer: All right. Number three is injections.

Dr. Pastuszak: Yeah. So injection therapies are drugs that we inject directly into this scar tissue that can either help dissolve it or prevent more of it from forming. And there are three, in particular, that have good clinical evidence that they work, and we offer those here at the University of Utah and at other major centers.

Surgery

Interviewer: All right, number four is surgery.

Dr. Pastuszak: So surgery, there are numerous surgical options. And this is probably a conversation best had with your urologist, particularly a urologist who has done this a lot because the surgeries can get somewhat complicated.

And the right option should be really an intimate discussion between you and your urologist. But these are highly, highly effective, and you can be pretty much straight coming out of the operating room.

Interviewer: If you're counseling a patient on these options, what's your hierarchy of where do you start? Where do you end up? Do you start right at surgery, or do you try injections first?

Dr. Pastuszak: No. So I think shared decision-making is the way to go. You need to talk to your patient and figure out how much they want treatment, and how quickly and, you know, ultimately how much time they're willing to devote to treatment, and how aggressive they want to get will help determine what they end up doing.

Interviewer: All right, so it sounds like, if you're serious, you really should see a urologist, take a look at injections or surgery, probably, are your two best options. That's what I gathered out of this conversation.

Dr. Pastuszak: Yeah. And I think the traction therapies are really good options for guys who don't want to seek help from a physician right now. But, you know, I would encourage guys to come in, at least have a discussion because that way you can know what the evidence is, one way or another, and make your decision based on a level playing field.

Interviewer: And my final question is, a lot of times when you do a search on the internet, you'll see people that have a condition and they say, "I've been to all sorts of doctors and nothing is working." What if a man has seen a urologist and it's just not getting better? What do you do at that point?

Dr. Pastuszak: So I think if a man is seeing a urologist, that's already a step very much in the right direction, but not all urologists are created equal. There are definitely subspecialties within urology. And so, if a man has not seen a male sexual dysfunction specialist, so somebody who is specifically trained in managing these types of conditions, and there are a handful of us across the country, then they should seek someone out like that.

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