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001: Let’s Talk About Incontinence

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Summary

In this episode of Life Without Leaks, we discuss the state of incontinence management and treatment today with Steve Gregg, the executive director of the National Association for Incontinence. In this episode you will learn:

  • How many people suffer from Urinary Incontinence in the US

  • Why people don’t talk about it

  • What types of doctors and treatments are available

  • What NAFC can offer to those suffering from Urinary Incontinence

Resources

Bladder Diary

Managing Urinary Incontinence At Home eBook

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: Life Without Leaks is brought to you by the National Association for Continence. NAFC is America’s leading advocate for patients with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians and caregivers, all available at NAFC.org.

Welcome to Life Without Leaks. This is a podcast that’s aimed at the incontinence community, trying to discuss some of the solutions that are available to them, discuss some of the challenges that people face, give people a comfortable and welcoming environment where they can discuss solutions and approach to try and help live a better life despite incontinence or overcome the challenges on incontinence.

So with us today we have Steve Greg, Steve is the executive director of the National Association for Continence. Welcome, Steve, how are you doing?

Steve Gregg: I’m fine. Thank you. Pleasure to be here.

Bruce Kassover: And also joining us is Robin Sterne and Robin has been, been working with the National Association for Continence for, wow, a number of years now, and really has a sense of what the organization does and some of the challenges also from a personal perspective, you know, not just, just looking at it as an organization. Hello Robin, how are you?

Robin Sterne: Hi, so glad to be here. And so glad to be able to discuss something that people don’t really like to discuss, and people are kind of ashamed of discussing, and we just want to make it mainstream and be able to come up with ideas and discuss things that we can do to help you.

Steve Gregg: You know, in Western society to apparently we don’t talk about bodily habits. It’s just not something that we do. There are other countries that do a really nice job, Australia, for example. But what is odd is if you think about things that humans do every day, we do three things every day.

You have to take in some food and beverage, right? You have to have some form of nutrition and it’s processed and you need to pee and poop. All of us. And there is no exception. And by the way, if you don’t pee or poop, that’s a bigger problem. We all do it. But we don’t like to talk about it.

Bruce Kassover: Yeah, the only thing I think the only time people are comfortable talking about is making jokes and it is, so it’s something either, or it’s so intensely personal that they’re, everybody’s afraid to, or it just becomes something that people laugh at, and neither one of those is really productive when it comes to addressing problems. I mean, because this is, this is a pretty big problem area for a lot of people. I mean, I mean, how many people do suffer from some form of incontinence? What, what are we looking at?

Steve Gregg: So the numbers are astronomical. So if you look at overactive bladder, which is just another name for urge incontinence, which means when I have to go, I have to go right this minute, right now, I can’t wait, there are probably 35 million symptomatic Americans. When you look at stress urinary incontinence, which is you leak a little bit when you laugh sneeze, cough, pick up a baby, there are probably another 35 symptomatic Americans. So that’s 70. And then you add in bowel-related issues. You know, it’s probably another 10 to 20 million people.

So roughly 70 to 90 million Americans, adult Americans are challenged by this, which makes it the largest problem facing the American population today. And nobody talks about it.

Bruce Kassover: That’s unbelievable. I mean, even just trying to think of the numbers, it’s like 325 million Americans, so we’re talking about something on the order of one out three people if we, assuming that there’s no overlap. But even if it’s not that, we’re still talking about one of, you know, one out of four, one of the five people who have some sort of issue… that’s, it’s like shockingly surprising how big a problem it really is.

Steve Gregg: Well, the rule of thumb is that one in three women over 18 will experience leakage problems in their life. And so the way to think about that is if you remember back to freshmen chemistry class, you know, when they said, look to your right, look to your left and at the end of the semester, two of those people won’t be here. So if you’re a woman that’s over 18, you look to the right, you look to the left and if neither of them leak, it doesn’t look good for you.

Bruce Kassover: That’s true, I suppose.

Robin Sterne: I think a really important point to discuss and is it’s very similar to mental illness, because as in mental illness, you don’t want to talk about it, and in incontinence, you don’t want to talk about it either. And look at the problems that we’ve had because of not talking about it.

So I’d like to showcase the fact that this is a problem. This is a national problem. It’s a problem we don’t discuss, and there are solutions and there are treatments and we want to make people aware of them.

Bruce Kassover: You know, that is another thing – that’s, that’s a pretty important point actually, I mean, do you get the sense, Steve – you work every day with, with, with patients, with physicians – do people just not understand that there are real actual solutions that are out there for them, and that this is a condition that really can be addressed?

Steve Gregg: Yeah, no, that’s actually a really big problem. Um, when people come to NAFC.org, they come to us, they typically ask a series of questions. You know, “What is this?” They often ask, “Why is it happening to me?” And that’s a question we can never really answer.

“What can I do about it?” And we do have recommendations on that. And then, “Who do I talk to who can help me with that?” So if you think of those three questions, “what is this? What can I do about it? And who do I talk to?” We start trying to push them into a variety of treatment options and management solutions.

Bruce Kassover: Is there such a thing as a typical patient? I mean, I, I guess considering the fact that there are, there’s a whole range of different conditions that people can have, but you know, if we look at, say, for example, overactive bladder, is there sort of a typical patient profile and a series of relatively common sorts of therapies that they might, might be presented with?

Steve Gregg: Well they’re mostly unique, but for overactive bladder, to add a little more depressing statistics against this, from the onset of symptoms to the time they seek treatment is on, on average, about seven years. So people are trying to find their own solution and suffering through this. And what is even more depressing is, it is usually some type of catastrophic event that occurs that forces them in to see their doctor.

The one we hear most often is, “I was at my daughter’s wedding and I wet myself in the front of my dress.” And I can’t think of anything that would be more tragic than that, but it’s still seven years. And then sadly, of those that are symptomatic, only one in three typically ever seeks treatment. So they’re either using home remedies, which are not particularly good for you, right? Which could be double underwear, paper towels, sometimes it’s feminine hygiene products, or they move to things that you can buy over-the-counter, so it would be pads, pull-ups, guards, shields, those kinds of things, but rarely do they go in and talk to a doctor about it.

We are seeing to our delight more and more men and women are actually raising it with their doctors. So that’s the good news. The bad news is they’re actually raising it mostly with things like primary care who have very limited time and very limited understanding of incontinence. And so the solutions haven’t been great coming out of primary care.

Bruce Kassover: To go back for a second, one of the things you were saying that I think is encouraging I suppose, is that we’re seeing a lot more advertising for absorbent products and for other sorts of solutions and, and, you know, I mean, nobody really likes to be marketed to or advertised to, but I do think that just hearing it more often probably is really helpful because it normalizes it, makes people realize that they don’t have to be uncomfortable talking about it. They don’t have to be uncomfortable trying to find a product that works for them. I mean, do you, are you seeing that that’s the case, that the taboo is starting to fall away?

Steve Gregg: I think that some of the television advertising, if there were a variety of treatments and treatment options would go to that, right? Disease awareness, go in and talk to your doctor. I joined an NAFC in 2014 and in that time there has been one new pharmacological product brought to market.

It costs on average about two and a half-billion dollars to bring a product to market these days, and so the return has to be significant. So that said, in that same time, since I joined NAFC, there have been approximately 14 new diabetes type two diabetes drugs, and we actually know what causes type two diabetes and what some of the treatment options are. There hasn’t been enough investment in this space, to raise awareness that there are new and effective treatment options.

Bruce Kassover: It’s amazing when you consider the size of the market that there hasn’t been more investment into research and development, is there a reason for that?

Steve Gregg: No, I don’t know specifically. What we have heard for a long time is that it’s primarily a woman’s problem. That actually is not true. And what women have been told historically is, first there’s nothing we can do about this, and that’s not true, or you shouldn’t have had those babies, because those babies are a large reason why some of this occurs… I can’t believe somebody would actually say that in the 2020s, but we still hear that… So they’ve been told this sort of is something you’ve got to suffer with and get over. Men, on the other hand, when they raise the issue of leaking or control, we see them being sent to a specialist, a urologist, much quicker, which we think is largely due to a concern about prostate health. So men sort of get a very different path to treatment than women do.

Bruce Kassover: Is there truly a greater prevalence among women or is it just that men for whatever reason, don’t seem to get any attention?

Steve Gregg: The numbers are pretty close together. I mean, when we see it and we do survey work, we see sort of 65% women, 35% men. I think the literature says that things like stress urinary incontinence is close to 50-50. It’s 52-48 percent, something like that.

The other piece that’s actually interesting is, we have seen data that suggests that in a family, when she has her first baby, he becomes the largest child in the house. That is, men typically give up the right to their health care because she solves the baby’s problems and his problems.

So largely what we’re seeing is that when men talk to a doctor about this, it’s because of encouragement from a spouse, a partner, a loved one that actually forces him in to actually seek care. She’s a little more proactive in trying to figure this out.

Bruce Kassover: That’s interesting. I guess that that sort of fits into that stereotype of, the woman is the nurturer and the man is a rugged individualist, so unless… she’s, she’s the one who recognizes this problem and goes out and helps others, and he just sort of is a little too macho for his own good until he’s compelled to go, I suppose. That’s interesting.

Robin Sterne: I think it is very important to raise awareness of the problem and make it not a stigma anymore. It is such a big problem and we have so many diseases and so many issues in the country right now that this doesn’t get enough attention.

Steve Gregg: Yeah, Robin, I wouldn’t be surprised that if you went to a gathering of some of your female friends, dinner or something like that, or a glass of wine, and you stood there long enough, somebody would make a comment about it. Either, “have any of you have the same experience,” or “what the hell is this?” Or “why didn’t anybody tell me as I got older?”

Robin Sterne: “Don’t make me laugh – I’ll have to run to the bathroom,” for example.

Steve Gregg: They tend to talk a little more to each other, and we haven’t been able to crack how to get them to talk to each other and then have somebody say, you know, organizations like NAFC, you know, they can answer some of those questions honestly, appropriately, and then maybe give you something you can try on your own before you have to see a physician.But then how do you find the right physician? And then how do you have a meaningful conversation with that physician?

Bruce Kassover: Yeah, there is a ton of misinformation and misunderstanding out there, isn’t there?

Steve Gregg: You know, there is. I was recently at a place watching something on television and a lot of the supplement stuff is not regulated by the FDA.

And I was listening to, you know, sort of a direct ad about some supplement that would cure all your bladder related issues. And what we’ve seen recently is there is a population of those individuals that truly believe that as the problem gets worse, they are no longer in control of their life. They’re not trying to be controlling, but it’s like, my body’s letting me down, I don’t know how to control this, and they’re willing to try almost anything: Supplements, exercises to see if they can get back to some degree of what they would consider normality. And some of it they can do, but some of it, they’re just wasting money and time, but they’re desperate for a solution…

Bruce Kassover: …but not desperate enough to go to a physician who has real proven solutions necessarily.

Steve Gregg: Yeah, but again, if they go in to see a primary care – and not all primary cares, but a lot of primary cares – the research we saw from 2010 was, primary care sees the patients every eight minutes. And so if you come into my office and we talk about your blood pressure and we talk about your vitals, right? So cholesterol, how you’re doing, maybe your weight, not typical, my eight minutes is about up. And then when you say, gee, I’m starting to have some problem with incontinence, that’s a really big conversation that they’re oftentimes not prepared for. So one of two things happen: The lucky ones are referred on to a specialist, an incontinence specialist, or they get a prescription for some medication, usually – more often than not – an older medication that has side effects.

And if she goes away and never calls back, the doctor says, “I did a great job cause I gave her a script,” and she’s happy, and we know she’s not on medication in three weeks.

Bruce Kassover: So what would be the best course of action if somebody is trying to find a legitimate solution to that problem?

Steve Gregg: So they’re really two big groups. There are the urogynecologists, and they tend to be more focused on women’s pelvic floor health. Problem is there are only about 2,500 of those in America. And then the urologists are a really a good source, to talk to a good urologist. Within the urologists there are some that are very focused on female pelvic health – there’s actually a specialty for that. So it’s not just traditional old fashioned urology. They’re pretty good at knowing all of the treatment options. And there’s a really, really good institutions. The problems are, you know, if you live in rural America, Or you live in places that are not very populated, it’s oftentimes really difficult, like in all professions, medical professions, to find somebody who’s really qualified.

Bruce Kassover: Do you think that nowadays with telehealth becoming more commonplace and easier to access that that might be making a difference for, people who don’t necessarily have direct access?

Steve Gregg: You know, we’re really hopeful that telehealth makes a difference. One of the things, there are only 10,000 urologists, so oftentimes when she wants to get in to see one, the wait times are really long. And if telehealth does nothing else other than getting them in to have their initial conversation and lay out a treatment plan, here’s what we’re going to do from step-to-step at this kind of time, then at least she has an idea of what she’s going to do. The first steps are typically behavioral modifications, so you can imagine, Bruce, if you and I went in and started talking to a doctor and started talking about things and he said, “well, you know, Bruce, maybe you shouldn’t have those three martinis after nine o’clock at night, and then you wouldn’t be getting up all night, going to the bathroom.” Once you eliminate those kinds of things. And then you start doing things like pelvic floor exercises, both for men and women, now you’re making progress and they can get to, “okay, now this is a real serious problem,” and it’s given them enough time to evaluate how serious the problem typically is.

Bruce Kassover: So now where does physical therapy fit into this?

Steve Gregg: You know, it’s a really great first start. There are about 2,500 pelvic floor physical therapy specialists. And if you can find one of them and you can find them through their website, the American Physical Therapy association, APTA, if you can find one of them, they’re oftentimes really great.

And what I like about them, besides them being able to help specific, immediate symptoms, is they’re really good at identifying when you really do need to go see a doctor. It’s like, “if I can’t help you, I know where to send you.”

Bruce Kassover: And they can – and they’re the ones who can really be helpful, I suppose, a physician also, but a PT is really good for things like helping you with pelvic floor exercises and things of that nature that can make a real difference also.

Steve Gregg: Yeah. We have a number of partners that create devices. Apparently one of the hard things with Kegel exercises, pelvic floor exercises, and Robin, you probably hear this with your girlfriends too, is, you know, I’m doing these exercises, but nothing’s happening.

And the way that we hear physical therapists talk about is if you look at somebody and they got this crunched up face, they look at them immediately and go, “they’re not doing it right.” Also sometimes it’s loosening muscles and sometimes it’s strengthening muscles. So having somebody who can help you do it correctly, the thing we love about some of our friends is, you know, this digital world is, they use devices and the devices measure pressure. So if you’re strengthening those muscles, we know what the force is and we know whether you’re getting better and you can see improvement. So it’s not like the old days where you just sit and do these exercises. They actually can give you feedback to make sure you’re doing them both correctly and you’re making progress.

Bruce Kassover: Well, that’s very cool. That’s helpful, I could imagine. I guess it’s one of those things where, once you learn how to do it and you know that you’re doing it right, then you can just continue to do it yourself without the need that sort of feedback or instruction.

Steve Gregg: It’s sort of that old adage, right? When people used to say practice makes perfect and those athletes would say, no, perfect practice makes perfect.

Bruce Kassover: That’s right. That makes perfect sense. Yeah. You know, you practice doing something wrong and all you’re doing is reinforcing the wrong thing. Now, so tell me that. So, so what is, what do you see as, as NFC’s role? Maybe tell me a little bit about the organization and what you see as NAFC offering to people who are part of the community.

Steve Gregg: We are a national nonprofit. We were founded in 1983 in Spartanburg, South Carolina, by a woman who was way ahead of her time, recognizing that those individuals with incontinence needed help and resources to find out how to get the care they needed.

We are focused almost exclusively on bladder and bowel dysfunction. We loosely say we focus on belly button to knees, cover men and women through the entire life stage, so we also know that women will have incontinence or leaking related problems prior to childbirth, between children, midlife and then perimenopause and menopause.

And then men often will have stress urinary incontinence or incontinence-related problems, and then post-prostectomy, incontinence can be a real issue. It can be such an issue that we’re actually having occasionally men contact us and say, I’d never would have had prostate cancer surgery, if I had known about the level of incontinence that I was going to have, and we think that’s tragic.

It should have been made aware, or there should have been a treatment plan available, but it tells you how significant that kind of problem is. What we do is we make sure that they understand what the conditions are and then who to talk to and how to talk to them. And then with our doctor locator and that kind of thing, we try to get them into somebody who can take care of them.

Bruce Kassover: Well, so I can actually, I can go and find the doctor, you know, you, you’re talking about how it’s not always easy to find somebody who’s really qualified, so, so you can help me, help me do that then. Yes. Excellent. Well, that’s awesome. So, you said that you’re a non-profit… how do you guys, how do you survive?

Steve Gregg: We work with most of the industry partners in this space, all of them. So both pharma, med device, therapies, so we essentially work with everybody. And by that, we make sure that there is no dominant voice other than ours. So we make sure that we are completely non-biased, but we are informative across the spectrum.

We rely on the kindness of strangers, those that either have had a problem… It’s funny, Bruce, now, when you think about, am I doing a good job and are we making success, a couple of times a year, I will get a letter or a note. And the note may be very simple and say something like, thank you very much because you helped me at a time when I was having a hard time managing my mother’s health-related issues. And that heartfelt thanks means a great deal to us.

So we are delighted to hear that we’re helping those people. We don’t always know, but we’d like to know, we’d like to believe that we’re helping more people than not.

Bruce Kassover: And I suppose that because you have this, this really, really powerful presence online, there’s a ton of resources available at NAFC.org, all sorts of education and free downloads with brochures and trackers and bladder diaries and things of that nature, and being able to find all these things with the anonymity of the internet probably makes it easier for people to make use of everything you offer.

Steve Gregg: Yeah, we, we hope so. We do a lot on social media, which is primarily around awareness, to Robin’s point. How do you raise awareness that this is a problem that we all need to address and that there are solutions available. And then we have resources, tips, guides, a plethora of information at NAFC.org. And then we have a small but very robust community that people join, because it turns out, not surprisingly, what happens is people say, you know, “I got this problem, now you’ve told me we can do, can I talk to somebody like me?”

And that is a forum. It is monitored. It is carefully reviewed. So there’s no selling going on. Nobody’s going to sell you a supplement. There’s no yohimbe bark going to be offered and those kinds of things. And you get both streams that come from us about topics to let people talk about it, and we will often, if somebody goes down a rabbit hole that’s incorrect, we will make sure that we provide the right kind of advice. We don’t provide medical advice, but we can provide information that would help them go in and have a meaningful conversation with a physician.

Bruce Kassover: The idea of community has got to be really powerful because, you know, incontinence can be so isolating, I suppose, people don’t, they’re ashamed to tell anybody, they feel like they can’t go out anywhere, it really is life limiting, isn’t it?

Steve Gregg: You know, one of the things that we’ve just started looking at based on a new research project is we’re starting to look at ageism, this idea that when you get older, you’re not as vital or important anymore. And that drives isolation. And I’ve recently seen some numbers that, isolation and aging populations can dramatically shorten the length of their life, because they’re not part of a community and some of the things that we do when we’re younger. And one of the things we know for sure is incontinence drives isolation. To make matters worse, this affects all socioeconomic groups. And so when you look at those that struggle, and we worried about this tremendously during the first year of the pandemic, they don’t have money for supplies, pads, pull-ups, those kinds of things.

They’re making decisions that a lot of households make, but they’re balancing, “Do I buy food? Do I buy medication? Do I buy incontinence products? Do I pay rent? Or do I pay utilities?” And so you have families that are making very hard decisions. And right now there’s not a way to particularly help them.

There is a little money set aside for Medicaid to help some folks provide products. But we were asked recently if this is a medical problem, then why isn’t it treated as a medical problem? And why can’t people get some form of reimbursement? And I think that goes to Robin’s point is people just don’t think it’s a really big deal, right? You know, just go to the bathroom more often. That’s not the answer.

Robin Sterne: And that stigma that’s attached to it really should not be there at all. There should be no stigma attached to having a problem like this. And that’s why I think that why we were putting together a podcast like this, to be able to showcase the problem, to be able to make it more mainstream and not as much of a stigma and that there are treatments and solutions available and people just don’t know about them.

You know, we see things with AARP and other organizations that send you emails all the time with webinars, and they’re always the same subject: Social Security, Medicare, and they never cover subjects like this, which absolutely should be covered, and we rarely see them.

Steve Gregg: You know, I think this, first, the boomer population started some of this conversation, and that is, when you hear them described, they’re really clear that we’re not going gentle into the good night. So as I get older, I have no intention of my great grandfather’s retirement, which is a rocking chair sitting on the front porch.

And some folks want to do that and they should do that because that’s great for them. But the number of men and women that are starting businesses at 50 or 60 or 70, they’re changing careers. They’re doing things. Our population is really vital. It’s really active and they don’t want to be seen as really old. So then why do you treat me like I’m really old, right?

I need to find an incontinence solution that allows me to live life to the fullest extent. And I get to determine that, not anybody else. And so it’s one of those areas where we are hopeful. We are optimistic, but it’s moving very slowly. This is not just a problem in the elderly. And by the way, we start to see people as young as 18 years old, contacting us saying, you know, I have this bladder problem. I leak. The number of people that suffer with bedwetting issues as adults, and some of those are really tragic, we got a correspondence from a young woman that said I’m 18 years old, I’ve been suffering from bedwetting for the last three years, and I’ll never have a relationship my entire life. And you want to, it’s anonymous, but you want to go, “We can help with solutions for this… call us, you know, I’ll find you a doctor,” so we’re hopeful, but it’s moving way too slowly.

Bruce Kassover: So what do you see as the future? You talk about how there really haven’t been a lot of new therapies that have been introduced and you say that it’s moving too slowly. Where do you, where do you see the incontinence care community in say 5 or 10 years from now?

Steve Gregg: You know, what I would love to see is that, since I get to make this up, I’d love to see that in a medical school, there is a moment or two, or at least a lecture dedicated to incontinence for all medical students.

So if you have a primary care, other pieces, they at least have some general understanding of what these problems could be and then encourage to either refer them on or what that looks like. So that more people that say, “I have a problem,” somebody sits up and goes, “Okay, you’ve raised your hand, and I think we need to do something about this.” It doesn’t mean everybody has to do everything, but I could get them into the care of somebody who’s focused on that. I think that would be great.

Secondly, if we start having this conversation that, I’m sorry, peeing and pooping, we all do it every day, even the queen does it, we start recognizing that if it gets out of whack, there’s something we need to do. Waiting and hoping it’s going to get better is not an answer. We had hoped when I started in 2014 that if we could raise awareness of this, get people into care, we could potentially put ourselves out of business. Unfortunately, doesn’t look like that’s going to happen.

Bruce Kassover: But you can keep on trying!

Steve Gregg: You know, if there’s a way that we could let people know that they don’t need to suffer, and they certainly don’t need to suffer in silence, and that they can live the life that they would like to live to their fullest, if we can help direct them to some of that, it’s great. Now here’s the best part. What we want them to do is have a meaningful conversation with a doctor, with a nurse, with a physical therapist, what the treatment option that patient is offered is not really important to us, other than it could be efficacious, it should be safe, it should be well-known. But what that patient and doctor decide is specific to that individual. And so we just want them to get it done.

Bruce Kassover: Excellent. Well, I guess that that’s the biggest challenge then, is motivating people to take action. You know, there really are solutions that are out there. So you know what, Steve, I think that on that note, that we have a hopeful future of people just start to advocate for themselves. We appreciate you spending the time talking with us and, and, you know, giving us insight into the National Association for Continence and anybody who is interested, you can find them online NAFC.org – that’s NAFC.org.

And, we look forward to speaking with you and other people who are involved with the organization in the near future, including physicians, including patients, caregivers, therapists, and, you know, learning more about just how treatable of a family of conditions these are. So thank you, Steve.

Steve Gregg: It’s my pleasure.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is “Rainbows” by Kevin MacLeod. More information about NFC is available online@nafc.org.

Comments

One Response

  1. Thank you for making this available. I’ve had urge incontinence for many years. I have been helped by a urologist and continue to have PTNS treatments every 6 weeks. Medications have not worked. I’ve had PT as well. It’s so good to know you’re here for support! It’s an ongoing issue socially and I continue to be open minded about new treatments. I so appreciate you!

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