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002: All About OAB – Part 1

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Summary

Overactive Bladder – also known as OAB – affects roughly 33 million Americans. While it may not be life-threatening, it can be life-altering. It’s symptoms include a frequent and urgent need to use the restroom, waking up several times at night to urinate, and sometimes leakage. It’s most common in women, but OAB can also affect men.

The good news is that OAB can be treated, and in this 2-part series, we discuss causes, treatments and management of the condition with Steve Gregg, the executive director for the National Association for Continence.

Resources

Overactive Bladder Resource Center

Bladder Diary

Overactive Bladder Downloadable Brochure

NAFC Newsletter

NAFC Message Boards

Transcript

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: Welcome to life without leaks a podcast by the national association for confidence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers, all available at NAFC.org. This podcast is supported by our sponsor partner, Medtronic, maker of InterStim systems for bladder and bowel control. To learn more about InterStim therapy, visit controlleaks.com.

Welcome back to another episode of life without leaks. The podcast brought to you by the national association for continence discussing all sorts of issues related to bladder and bowel disorders. And with us again, today is Steve Greg, executive director for the National Association for Continence.

Welcome Steve, how are you doing?

Steve Gregg: I’m great. It’s good to be back.

Bruce Kassover: Excellent. Then also with us is Robin Stern who has been working with the national association for confidence for a number of years. Welcome Robin, how are you?

Robin Sterne: I’m great, and I’m really excited for today’s show because we have so many interesting things to talk about.

Bruce Kassover: We do, we’re going to be talking about overactive bladder or OAB, which is one of the most common conditions that people encounter when they first develop symptoms of incontinence. So Steve, maybe you could tell us, what exactly is overactive bladder.

Steve Gregg: Overactive bladder is another way of referring to what is called urge incontinence. Urge incontinence is when you have to go, you have to go right away and oftentimes characterized by the inability to hold urine. And so the stories we hear about people that suffer from overactive bladder are usually pretty tragic. I can’t get to the bathroom in time. I have to run. I’ve had an accident in public. So, when you gotta go, you gotta go right now. And if you can’t get to a bathroom, that tends to be a real person.

Bruce Kassover: So Steve, can you tell us a little bit about the prevalence of OMB and the demographics? Are there any particular groups that seem to be more affected than others and how common is it in general?

Steve Gregg: You know, Bruce, what’s interesting is that NAFC has taken the position of making sure that we’re supporting women gain access to care, particularly around this problem. But if you look at the prevalence, it’s nearly equal, more or less, 49% male, 51% female. And so it affects the population about equally. When I say that we tend to focus more on females is that there is some evidence, particularly in midlife and older population, that if you want to talk about his health, the way to reach him is through a partner or spouse, because he’s less likely to make those decisions.

And so we tend to, to encourage her, to encourage him to go in and find solutions for his health. Males are also a little more interesting from a problematic standpoint, because we think that any change in urinating, either the sudden urge to need to urinate more, the inability to urinate, the feeling of urgency but yet nothing happens is oftentimes related to prostate health.

And so we are inclined to when a male speaks up about having urinary problems, we believe that first inclination is not whether it’s overactive bladder, it’s whether it’s something more serious, like prostate cancer, which is completely appropriate. And so we’re, we’re very delighted that they oftentimes find help quickly.

Unfortunately, that’s not typically the issue with women. And so when they bring the issue up, it’s often somewhat dismissed again, either because of childbirth or potentially because of aging. Again, both those are drivers for incontinence related issues, but it can be solvable. So we want to get them in to see the right kind of physician to get the care they need.

Bruce Kassover: So while there may be some association with aging, it’s not a normal part of the aging process, though is it?

Steve Gregg: It is not necessarily a normal part of aging. And what we’re seeing is that we, we go out and talk to men and women about feelings of incontinence when it occurred. And our very first research project, we found an awful lot of people that had begun to suffer some form of leaking or urgency as early as 18 or 19 years old. So it can actually occur really early in.

Bruce Kassover: Wow, that’s surprising, and I guess when you consider that a can start earlier than you might think, and we also do have an aging population in general… I mean, how many people overall do you think this affects?

Steve Gregg: You know, when I look at the numbers, we have about 35 million symptomatic Americans for overactive bladder. We have about 30 or so million Americans that are symptomatic for stress urinary incontinence.

And then there’s a, there’s a famous group, sort of mixed, both, so then let’s add some more on. And then if you look at some of the bowel related issues that probably ranks anywhere between 10 and 15 million Americans, and I’m not necessarily talking about some of the GI issues like IBS or IBD, I’m actually talking about bowel incontinence, you know, we’re probably at 80 million Americans, adult Americans. So in some ways, it’s the single largest health issue facing America. The good news is that rarely does anybody die from incontinence. The bad news is that it tends to be dismissed, either as part of the aging population, there’s nothing that I can do about it, and that’s just not true. There’s a lot that folks can do about.

Bruce Kassover: Can you talk a little bit about what sort of symptoms somebody might expect to see, especially if they’re just developing the condition, so it’s something that they’re not really aware of or something that sort of taking them by surprise?

Steve Gregg: Yeah. We, as humans seem to do a pretty good job of understanding or knowing when I’m going to have to go to the bathroom. But usually there’s a fair amount of time, right? So you’re in a meeting, you’re traveling, you’re at home with loved ones who are doing stuff. And it’s like, you know, I think I’m going to have to go to the bathroom.

So feeling that your bladder’s a little full, but almost always, when that occurs, you have a significant amount of time. As that urgency or that feeling of urgency occurs greater and greater, then a couple of things happen. One is,  become more acutely aware that when I feel like I need to get to the bathroom, I need to know where there is.

So it’s not one of those things I can take my time towards that creates a fair amount of anxiety. And then as it gets worse, I know that the amount of time from when I first feel it to the time I can get to the bathroom has shortened. We think that all of this is because the nerves that actually control the feeling of bladder fullness are just, frankly, overactive. And so one of the ways this tends to be treated is, “I’ve got to get those nerves to calm down.”

Bruce Kassover: That makes sense. That makes a lot of sense. Tell me about frequency of urination. Does somebody who finds that they have to go more often than they normally do, is that a symptom of this as well, or is that a separate condition?

Steve Gregg: Well, it can be both, but yes, it is a symptom of this. So typically, we as adults, we urinate anywhere between six and eight times a day, something to that nature. And as we’ve said in previous episodes, if you’re not going that much, that’s a problem. And if you’re going a whole lot more, that’s also a problem. And so oftentimes physicians will ask patients to fill in what’s called a “bladder diary.” Bladder diaries are a really good way of understanding how often I go, how much of an urgency did I feel when I ran to go, and then about how much volume did I void?

And that way the doctor is actually working off a little bit of data going, “this is not just a recall – because we tend to get really confused about things like that – but I have a little bit of data.” W hen we see men and women that come in that are voiding 14, 16, 18 times a day, doctors are pretty sure that’s a problem because the amount of time between each void would be getting shorter.

It also allows the doctor to look at things like medication, because as we know, a lot of the adult population in America could be on any kind of medication, particularly the diuretics for a heart-related issues that both encourage urination and encourage a lot more volume voiding.

And so what a doctor wants to make sure that he’s doing is, before I start prescribing or trying to fix overactive bladder, I need to determine the extent of how serious your condition actually is.

Bruce Kassover: What about waking up during the night? Is that also a symptom of OAB?

Steve Gregg: Well, it could be, but that’s really complicated.

And what you’re talking about is what’s referred to as nocturia, and there are a couple of things that can happen. And then there’s a really important negative consequence of this. It is not uncommon to get up and void once or twice during the night. If you’re avoiding four to six times a night, that’s a real problem. That could also be because of overactive bladder, but it could also be because of the result of – they don’t typically use this term – but the kidneys are doing more to produce urine because you’re laying down.

And so there’s a whole new set of drugs that are designed specifically to effect on the kidneys. But nevertheless, that’s a real issue. The reason I mentioned as an issue is the leading cause of death in older Americans is falls. And the majority of falls occur in the bathroom at night. And so if a man or woman is sleeping, wakes up and has to get up and run to the bathroom, blood pressure can be a problem… Falling from blacking out can be a problem… Tripping, stepping over, this sense of urgency creates an emergency attitude that oftentimes leads to negative consequences like falls. So it’s actually a really serious condition that you want to have discussed with your friends.

Bruce Kassover: That’s really interesting. It’s a hidden consequence. I don’t think a lot of people even realize. Now this one may be splitting hairs, but tell me, is there a difference between just having an urge to urinate and actually having leakage, or does that all fall under the umbrella of OAB?

Steve Gregg: It can be a little bit of both. There are essentially three categories of bladder leakage. One is stress urinary incontinence – cough, sneeze, lift something, in particular you see women lifting small children. Oftentimes as a consequence of childbirth you get a little bit of leakage that you can’t control, but you don’t necessarily have this sudden urge to go to the bathroom.

At the other end of the spectrum is urge related incontinence. We’ve been talking about OAB where if I got to go, I got to go now. And then just to make everything really fun for folks, there’s actually a mix. So a mix is you can actually have a little bit of leaking when you cough or sneeze and then you might have urge related incontinence.

We don’t know whether those that are symptomatic for SUI – stress incontinence – automatically leads to urge, but it’s one of those things that once you start being aware of leakage, then you’re really sure you’re making sure you’re covered should an accident.

Robin Sterne: Steve, we’ve been talking about a lot about symptoms and about the danger of the people when they have to urinate several times during the night, can you explain to us a few of the, of the common triggers that can produce an episode of having to urinate urgently?

Steve Gregg: So Robin, I’m not exactly sure, I can answer that question, but here’s some of the things that we do know: As an individual begins to recognize that they are symptomatic for having some form of bladder problem, we talked about doing a bladder diary. The other piece that we’ve started to look at is making sure that people understand, what are you doing on a regular basis from a diet and nutrition standpoint? And one of the things that I think a lot of people love is, are there supplements I can take to make this stop?

You know, most of those comments are never evaluated by the FDA. We haven’t found anything from a supplement standpoint that would actually help. There don’t seem to be things that we could eat or drink that would almost from a pharmacy calendrical standpoint, help. We know that there are certain foods that are bladder irritants, and there are foods and beverages that actually stimulate urine production, if you will.

And we all know that’s true because that’s alcohol. And so one of the things that doctors really do like to understand is, when you tell me what your bladder diary is like, tell me a little bit about your nutritional habits. The common joke we hear from a lot of urologists is our, you know, Bruce, if you’re going to the bathroom four times a night, maybe we ought to back off those three martinis after 10 o’clock, which would produce more urine.

So as long as some of the things that we’re doing are, to minimize bladder irritants and bladder usage, if you will, then we can get to how big a problem there is. And again, nocturia is a little different because it could be a variety of things that we’re just really beginning to understand.

Bruce Kassover: What about caffeine? You know, people do love their coffee…

Steve Gregg: They do love their coffee and tea and soft drinks. And almost all of those are bladder irritants. And that’s not to say you can’t have those as part of your diet, but if you’re starting to suffer from symptoms of overactive bladder in particular, you want to make sure that you’re managing that as best possible.

So if you find out that by having my nice 24 ounces of coffee in the morning, and right after that, I’m going to have to run to the bathroom, you either want to cut back on the coffee, cut back on the caffeine, or manage your day in such a way that I know, when I do my caffeine, I’m going to have to find the bathroom very quickly.

That’s a choice. As the population ages and some of the speed to get to bathrooms becomes a little more difficult, then you want to start looking at maybe instead of the 24 ounce cup of coffee, you know, maybe something, a little more appropriate sized and maybe even decaffeinated coffee.

Robin Sterne: It brings to mind a story that actually happened to me.

I was going on a flight to Europe and I was a little nervous. It was a over a 10 hour flight, and I hadn’t done it before, and I am getting a little bit older, and. I was a bit nervous about the flight. So I actually tried to control how much I drank for the entire day leading up to the night flight, going to Europe, just having sips of water and only having a few sips of water for the entire flight.

Can you explain to us a little bit about things that you can do when you have this kind of problem?

Steve Gregg: You know, Robin, that’s an interesting question. And it’s one of those that’s a real challenge. And that is, particularly on flights of long duration, while we think the plane is acclimatized to sea level, it’s actually acclimatized to fairly high altitudes, 6,500, 7,500 feet, something like that.

And because the air is recirculated, it tends to be pretty dry. And so what the airlines have learned, I think through advice of a lot of medical professionals, is we we’d like you to actually stay pretty hydrated. So they want you to drink water and those kinds of things. The problem with when you stay hydrated or over a hydrate is to your point: Now I’m going to have to walk more frequently to the restroom. And then depending on those long flights, number of bathrooms, space, difficulty getting in, disruption of circadian rhythms overnight, it can be a real challenge. The other piece that we hear a lot of conversation around is, it’s not so much the people that are drinking a fair amount of or a reasonable amount of water on an overnight flight, it’s the alcohol consumption. So now I’m at altitude I’m dehydrating, and instead of replacing fluids, I’m putting more alcohol in because I’m either going on holiday or on a business trip, and there are people that are still nervous about flying. And so we tend to make that issue a little bit worse. I think the general recommendation is to, particularly as we get older, to avoid as much alcohol as possible.

It’s not to say you can’t have a drink on the plane or before the plane, but we should really minimize that amount of alcohol consumption. When you’re looking at fluid replacement, as Bruce mentioned, we should probably avoid caffeinated beverages. I don’t think the cola’s, coffee, and tea are the ones to go with. And so just general, water’s a pretty good substitute. The simple way to make sure – which is slightly aside from OARB – is when people worry about, “I’m going to limit my fluid, then I’m dehydrated…” A lot of people don’t know what dehydration looks like. We may know what it feels like, but what does it look like?

And the easiest way to look and understand whether you’re hydrated is to actually look at your urine. It should be very light colored, should be almost odorless, kind of a light green, yellow color. If your urine is orange and particularly a deep orange, and it has a strong scent to it, that’s a good indication of dehydration. So if, if your urine looks like that on the flight, you probably haven’t had enough water.

Bruce Kassover: You know, Steve, what you said reminds me, so I guess it’s a little counterintuitive, but you know, I suppose most people’s natural reaction would be like Robin was saying, and like you were discussing, to limit the amount of water, right, but you really should actually be drinking an adequate amount of water. You should not stop drinking water because that can be counterproductive. Is that correct?

Steve Gregg: Yeah, I think it’s one of those things that we start to see in older populations, you know, as they start to find that the way they void, the amount they void, the urgency with which they need to void becomes more significant in their lives, they start cutting fluid out, and in the older population, that can – not always – but it could certainly lead to things like a drop in blood pressure. And again, now you have an older population that tends to be a little less stable on their feet, often because it’s just what we see in America, the medications that people are using to manage all kinds of health-related issues, and now I’m dehydrated and I have an urgency to void, I’ve sort of set up a situation for disaster. And so we want to avoid all of that, right? So we want to avoid that by making sure you’re protected for when this urge occurs. Now, we would like to go in and have you talk to a urogynecologist or urologist to talk about the severity of the problem, the length you’ve had the problem and what your treatment options would be.

And a really good urologist or urogynecologist is perfectly equipped to do that. In fact, they love talking about pee and poop – it’s one of the reasons we love them so much. And then as you start to understand the severity of your condition, you can start to make some decisions. For example, we do know that even those that have managed overactive bladder will oftentimes, particularly with female population, will use pads.

Pads are there from a really good standpoint to provide some protection from a modest amount of leaking. If you have real significant overactive bladder and you void a lot, a pad is not enough, and you’re going to have to move to something different, but if I’ve managed my overactive bladder, then I can maybe use some additional products to make sure that I’ve either given myself some more time to get to the bathroom or I’ve got a little more confidence to know that I’m protected when I need the protection the most.

Bruce Kassover: So beyond pads, what sort of treatments are available? You mentioned already about dietary changes and fluid management, but are there other treatments? I’m sure that there may be things like medications or even surgical treatments, but first are there other new behavior modifications that people can do to try and alleviate some of their symptoms?

Steve Gregg: Yes, Bruce, you know, the American Neurological Association and group called SUFU – they’re the surgeons – got together and created several years ago what’s called the “Care Continuum” for overactive bladder, and the Care Continuum outlines the steps that a patient should go through from a, “Hey, Doc, I think I have a problem…” all the way through the treatment options as well as the amount of time one would stay within those treatments.

And so the first thing is just as you suspect, Bruce, it’s “let’s gain awareness of what I’m doing and how big a problem I have.” So diet, fluid intake, beverage consumption, those kinds of things, and then a bladder diary to find out how often and how severe the problem is. And oftentimes patients then want to move into something that is non-invasive and we love them… there are about 2,000 pelvic floor-trained physical therapy specialists that are really good at helping train those muscles in the pelvic floor to strengthen those. Think Kegel exercises, and to some degree Kegel exercises on the Olympian nature, right? Let’s choose those up. Apparently Kegels, sometimes our muscles need to be strengthened and sometimes they need to be loosened, but in the hands of a really qualified physical therapist, you can make great progress.

The other reason we’d love physical therapists, is they recognize that if they can’t help you enough, they will be sure to make sure that you are referred on to the appropriate physician that actually may be able to help you. Most of us in America oftentimes have to go through our primary care physician, and most primary cares are really taxed from the amount of time that they can spend with a patient and the breadth of conditions that they talk about. Cholesterol, blood pressure, weight, anxiety, all of those things, with a limited amount of time. And so what we hope for is that either the primary care physician’s knowledgeable about incontinence or refers them onto a urologist or a urogynecologist. At that point, the physician can then talk about what oral medications would be available, and then, if oral medications aren’t enough, are there advanced treatment options – like Botox, for example – and, which is completely appropriate for some patients, there are surgical interventions for things like SUI that have been around for a long time as gold standards. So there’s a wide range of treatment options. And this pathway that is now being clinically defined, so it’s not just some nebulous, “someday, somewhere we’ll come ashore…” We can actually move you along to get you to a positive outcome that is satisfactory for the patient and the physician.

Bruce Kassover: So you talked about oral medications, what sort of oral medications are out there and are they really effective?

Steve Gregg: Yeah. There’s some older medications that have around for a long time. They’re called anticholinergics. And there is some discussion now about whether those are appropriate for older populations. So if you are in that age group and you’re taking this medications, it’s one of those things that you might want to talk to your physician.

There are some newer medications, two, particularly. One’s from the pharmaceutical company Astellas, and then there’s a second from a company called Urovant. And these newer medications typically have dual mechanisms of action, which means they tend to work a little better. More importantly, some of the old side effects – dry mouth, for example – have all been eliminated, so they tend to work pretty well.

Following those medications, there are things like nerve stimulation, sacral nerve stimulation, for example, or Botox, which is designed really to make nerves less active, that work really, really well.

Robin Sterne: Steve, I’m really interested to understand how Botox has been used. You know, Botox is almost a common word that we use nowadays. I’m surprised that it actually can work for bladder and bladder control. And I think that a lot of people might be definitely more inclined to try it because it’s kind of a mainstream word right now.

Steve Gregg: Botox is one of those therapies considered third line, and often that’s because of the way that payers, health insurance companies look at it.

So let’s go back and talk about the overactive bladder population. There are roughly 33 million Americans, I think it’s actually 35 million Americans that are symptomatic, but my math works up a little better if I do 33. Of those 33 million Americans, only about one in three ever seeks treatment for help. That is, the majority of those, that is 22 million people, are finding solutions on their own.

And that can range from disposable absorbent products that I can buy at any retailer or online. Or multiple pairs of underwear, feminine hygiene products… So there’s a wide range. So of that 33 million, only 11 ever get in to see a physician to actually be treated for overactive bladder. Almost all of those are started on some form of oral medication and, if you look at those that stay on medication for a year, the numbers are really pretty small. And so these advanced therapies like Botox exist because they’re very specific for the need of that patient. There are less than, probably, a million people that ever get into a valuable conversation about third line options.

So why Botox is incredibly well-known and incredibly efficacious – it works really well in the hands of a skilled physician – people are not having that conversation. And one of our challenges is to make sure people to know there are a variety of very successful treatment options, and it would be best for you to have that conversation with a very qualified doctor to find out what’s right for you.

Bruce Kassover: And you mentioned the sacral nerve stimulation, what does that involve?

Steve Gregg: You know, we have a nerve that runs down the back of our leg and that nerve is attached to other nerves, and it’s a way that they can actually provide some little teeny stimulation that makes the nerve calm down. And so those overactive bladder nerves, we want them to be less active.We don’t want them to be off; we just want them to be less active.

Bruce Kassover:Is that related to biofeedback at all or is that something separate?

Steve Gregg: Biofeedback is something entirely separate. So by our feedback is trying to learn a little bit about how you manage your muscle tone and control yourself, sort of a Kegel awareness, if you will, to make sure that when I feel, when I feel like this, if I work these muscles, I can give myself a little more time.

Bruce Kassover: And did I hear, you mentioned also that surgery is an option in some cases?

Steve Gregg: Oh, for sure. Surgery has been, very successful, particularly related to stress urinary incontinence. And oftentimes that’s because of anatomical problems post childbirth, anatomical problems post aging. You know, we laugh tragically that, you know, as we get older, and I’m certainly in this category, everything I have that used to be around my shoulders is now around my knees.

And so there are things that could be better supported and that’s what surgery does. Again, we are big advocates of surgical interventions for appropriate patients, but we really recommend doing your research and understanding what that surgery will look like. And then talking to a really qualified physician.

Bruce Kassover: Now, Steve, you’re talking about a lot of different treatment options, and I’m assuming that one of the reasons why there are so many is that they don’t always work for everybody. And I’m wondering, what do you tell people when they’ve tried to find some solutions and they’re not having a lot of success? What are the next steps?

Steve Gregg: So, Bruce, actually, you know, the, the issue is, it’s a little, teeny bit different. And by that, I mean, historically, we have found both men and women have really been challenged having a conversation with a doctor who’s knowledgeable, and we’ve seen that mostly at the primary care level.

So I go in and I talked to my doctor and again, the doctor’s limited on amount of time, I don’t have enough time to talk to you, make another appointment, come back. Well, this is a really difficult conversation. And so I’ve mustered the nerve to talk to you, and I didn’t get anywhere. And unfortunately for a long time, we’ve told women that it’s consequences of aging and there’s nothing they can do, and, and it’s related to childbirth and there’s nothing they can do. And, and both of those are incorrect. And so what we want to do is encourage people to have a meaningful conversation with their doctor. Now there’s a couple of parts of that that are really difficult. So one is, I need to think about the conversation with my doctor prior to the conversation.

And I need to think about it in terms that I want him to hear me, or she to hear me, when I say I have a problem and don’t allow a physician either because of time or whatever, to sort of dismiss that it’s not a big problem, because if it’s a problem for you, it’s a big problem. And as we talked about before and in other podcasts, it goes on every day, multiple times.

So, “Hey doc, I have a problem. I want to talk to you. Yeah. I’ve looked at it like this. This is what I think. And I need your help to understand this,” and force the conversation. Primary cares have limited amount of time. And so that’s often more difficult conversation, but if you can get to a specialist – a urogyn or a urologist – they love talking about it and will talk about it in great detail to understand how much of a problem it is for you, what’s your perception of the problem, what have you tried to do to fix it? So you’ve got to really understand that here’s a moment where I have to be my own advocate and say, “Hey, doc, here’s what I think’s going on…”

You don’t have to diagnose it. You just have to say, “Here are my symptoms, here’s how long it’s been bothering me, what can we do about it?” And don’t take no for an answer.

Bruce Kassover: Well, this has been a fascinating discussion. I want to thank you, Steve. There’s a lot more to talk about with OAB that we’ll be following up on in subsequent podcasts, but I really appreciate your time, so thank you for joining us today.

Steve Gregg: Oh, it’s my pleasure. I’m so thankful that we have a opportunity to talk about a problem that mostly is never really spoken out loud. And as they say in the south where I am right now, you know, this is not something we talk about in mixed company…But we need to talk about it in mixed company, and there are solutions to this that are not impossible to find and can easily help improve the quality of life of both younger and older.

Bruce Kassover: Well, thank you, Steve. For more information about overactive bladder and a full range of bladder and bowel conditions, visit NAFC.org. You’ll find free tools and resources, including things like bladder diaries and brochures and guides that can help you manage your condition, along with a doctor finder to help you find a specialist in your.

Life Without Leaks has been brought to you by the National Association for Continence.

This podcast was supported by our sponsor partner, Medtronic, makers of the InterStim systems for bladder and bowel control. To learn more about the InterStim systems, visit controlleaks.com.

Our music is “Rainbows” by Kevin MacLeod and can be found online at incompetech.com.

Check out Part 2 of our OAB discussion here!

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