Men’s Incontinence Challenges: Prostate Health, BPH, Mental Health & More.

Today’s episode of Life Without Leaks is the first of two parts discussing incontinence and related health issues in men. Our guest is Aleece Fosnight, a board-certified physician assistant specializing in sexual medicine, women’s health and urology, as well as a medical advisor for Aeroflow Urology.

In this episode, Aleece discusses some of the most common types of incontinence that men experience, prostate issues, BPH, prostatitis, and treatment methods, including medications and surgeries.

To learn more about Aleece, click here.

To learn about Aeroflow, an NAFC Trusted Partner, click here.

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. N AFC 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.

Welcome back to another episode of Life Without Leaks. I’m your host Bruce Kassover, and joining us today is Steve Gregg, the Executive Director for the National Association for Continence. Welcome, Steve.

Steve Gregg: Thank you Bruce. Glad to be here.

Bruce Kassover: Excellent. And with us today is Aleece Fosnight. She’s a board-certified physician assistant specializing in sexual medicine, women’s health and urology, and she’s also a medical advisor for Aeroflow Urology.

Welcome, Aleece!

Aleece Fosnight: Thank you so much for having me. I’m excited to be here.

Bruce Kassover: Excellent. We’re looking forward to it, we’re excited. Now, when I look at your bio, I see after your name, a whole lot of letters and abbreviations for things. That sounds very impressive. But I think that for me and for a lot of members of our audience, knowing that you’re an MSPS, PAS, PAC, those things aren’t necessarily intuitive.

Can you tell us a little bit about your background, your qualifications, and where you’re coming from?

Aleece Fosnight: Absolutely. I’d be happy to do that. So, yes, so after, after my name, it’s like an alphabet soup, but we’ll definitely talk about all of those. So I have a Master’s of Science in Physician Assistant studies.

I received that from the University of Kentucky in 2011. For the PAC, it means I’m certified, meaning that I have sat from my boards, I have continued with my continuing education. I have re-certified, and so that’s, C after P, it just means I’m, I’m certified. And then when you look at the CSCS, so I am a nationally certified sexuality counselor through AASECT.

The CSE is a certification in sexuality education, also through AASECT, which is the American Association for Sexuality Educators, Counselors and Therapists. There’s an IF, Which means I’m an ISWSH fellow ISWSH is the International Society for the Study of Women’s Sexual Health. Which means that I have done all of the qualifications and, and help, and help a lot with mentoring other individuals that are trying to get into the women’s sexual health field.

And then am NAMS certified, which is the, I’m a nationally certified menopause practitioner, so that’s through the North American Menopause Society. And then I’m not sure if we have the other additional letters, which is a HAES, which is H-A-E-S, and that’s Health At Every Size, meaning that I’m a weight-neutral provider. We don’t weigh our patients in the office. My main focus when you come in is not to focus on your weight as part of the concern that may be going on. And it may sound like I have a lot of specialties within women’s health, but I am currently the chair for our advanced practice providers for SMSNA, which is the Sexual Medicine Society of North America, where we have a huge focus on men’s sexual health and urology.

Bruce Kassover: Oh, well, I’m glad to hear this because certainly when it comes to the discussion of sexual health and the, the nexus between sexual health and incontinence, that’s something that, that people are always very, very interested in, so I’m sure that we’re going to want to have you back to talk a little bit more about that in detail.

But yes, today we really wanted to talk about men’s health and urology and incontinence as it relates to men, because, tell me if I’m crazy, but isn’t that a subject that seems to often play second fiddle when it comes to awareness of incontinence issues, especially compared to the, the focus on, on women’s incontinence issues?

Aleece Fosnight: Oh, absolutely. I mean, we know that women are three times more likely to have urinary incontinence than men, but about 25% of men do experience urinary incontinence, and I do feel that that is an under-estimated percentage. I know that I’m biased. I’m in the urology field and I see this all day long, but I do feel like it is a lot more common than what is reported. And a lot of that’s from embarrassment.

Bruce Kassover: Yeah. I think so. Actually that’s, that’s one of the things I really wanted to ask you about is how easy is it for men to, to open up and seek help when they notice that they’re starting to have symptoms?

Aleece Fosnight: Right. It’s not easy. You know, these are conversations that until typically healthcare providers open up that conversation, right, they don’t know that this is not uncommon. I think with the development of Viagra and having more conversations around erectile dysfunction, it has made the conversations easier for patients to bring it up, but we really haven’t seen someone come out who identifies as a male individual talking about their urinary incontinence.

And so, you know, we definitely look to Hollywood and the media and big, big, you know, key players in this, whether these are politicians or actors to really come out and kind of own it. And then it really opens the door for other folks to say, oh, I have that too, or I’m experiencing that as well.

And so until that happens, you know, typically this falls back on the healthcare provider. So I really push a lot of my family practice providers and colleagues to ask those questions at those annual follow-ups. The best way that you can open up that conversation as a healthcare provider is, is permission giving.

You know, I usually say, you know, I see a lot of men in, at the similar age that are experiencing some urinary incontinence. Is this happening with you too? Right. So they’re not alone. You’re opening up that door and you are the one that’s going to be asking, asking that. But I’m here to say for those that are patients that are listening to this, it’s common. It’s really common. And there is a lot of health concerns that can happen with urinary incontinence. And those sometimes can be key things for us to know what actually is going on. So could this be an enlarged prostate? Are you, are you having trauma to your nerves after you had a spinal surgery? So there’s lots of reasons why incontinence is an important screener for us and something that we should know.

Bruce Kassover: You know, something that you just said about finding some sort of a public advocate, somebody in Hollywood or somebody else, you know, a sports figure, a high profile person to sort of step up really resonates. I imagine that it’s got to be somebody who’s really very comfortable with their masculinity to do that, considering the sort of climate that men live in.

And I would imagine that in your experience also from the sexual health side you probably see a lot of that where people are just generally uncomfortable opening up about these things, these very sensitive topics.

Aleece Fosnight: Yep, absolutely. And because we know that urinary incontinence is more common in women, there’s a lot of conversation that happens around it, but it’s, it’s a normalizing, “Oh, I’ve had three babies, yeah, of course I pee in my pants.” Right. Without understanding that something can be common but not normal. And that kind of is the same thing in terms of men’s incontinence or a slower urinary stream, or you’ve got to get up three times at night to go to the bathroom. Although that may be common, it’s not normal.

And so I like to differentiate between those two things as well. I think that that’s really helpful in helping to understand, help my patients understand that this isn’t something that they just have to deal with and move on, that there’s things that we can do.

Bruce Kassover: So now what types of incontinence do men usually experience?

Aleece Fosnight: So typically what I have seen is more of an urge incontinence that’s happening along with a lot of urinary frequency. Most of the time, secondary to anatomy, that prostate just gets in the way because of prostatic hyperplasia, meaning that we have more cells of the prostate getting bigger and bigger and bigger.

It can narrow the urethra, which means that it weakens that urinary stream, which may take longer for folks to go to the bathroom. That prostate can grow up into the bladder, which displaces a lot of volume, so folks can’t hold as much in their bladder anymore. Or that the prostate can actually grow out and even put pressure on the rectum, and then that limits the ability to completely evacuate the bowels when you need to have a bowel movement. And so that leads to constipation, which puts more pressure on the prostate, which puts more pressure on the bladder, which makes you have more urgency. So I tend to find that my guys tend to have more of the urge incontinence, although they can have stress incontinence.

Typically that happens after somebody has a prostate surgery, whether they have had a resection of the prostate because of an enlarged prostate, and they’re not able to urinate as well, or they’re retaining. That can happen if somebody has a prostatectomy. The complete removal of a prostate, typically secondary to prostate cancer, that really limits the supporting structures in that area, so that folks then, typically those men would have stress incontinence, which is leaking of urine when coughing, sneezing exercise or movement. There can be functional incontinence too. We see this as folks age and there becomes a mental health component, whether it’s Alzheimer’s or dementia.

Even with Parkinson’s and multiple sclerosis individuals, that can happen as well with that functional incontinence, overflow incontinence, I see a lot, too, in my male individuals because of, again, that pesky prostate. It really makes it difficult to empty out the bladder completely.

And so when that happens, buddy, that bladder is like, “I’m only going to hold so much.” And so just like when you go to fill up your glasses at the sink and the glass only holds so much and then it overflows, once you re reach that top, that’s what’s going to happen with some of those folks. So it’s my job, right, when you come to see me and go, “Okay, Aleece, I have all of these things. Here’s what’s going on…” I’m going to ask some more questions so I can really home in on what type of incontinence is going on. Can you have all types of incontinence all at once? You betcha. It can definitely be overlapped as well.

Bruce Kassover: So one thing I’m wondering is, you’re talking a lot about the prostate, and it sounds like the prostate is sort of the root cause for an awful lot of the incontinence that people are experiencing out there. But what, what are some of the other causes that might be relevant also?

Aleece Fosnight: Yep. Absolutely. So we talked about constipation. I find that the typical US diet does not benefit good bowel movements. People don’t move as much as they need to. They don’t have as much fiber, they’re not drinking enough water. So constipation for sure can actually cause increased pressure and incontinence.

A high tone pelvic floor can do that too. And I know, I’m sure a lot of folks out there are going, “Aleece, what in the world is a pelvic floor?” We talk a lot about it with women, pelvic floor muscles in terms of pregnancy deliveries, babies, urinary incontinence and pelvic organ prolapse, but men have pelvic floors also.

The thing with pelvic floors for men is that they tend to be more shortened and tight. So rather than the pelvic floor muscles creating this nice hammock in your pelvis, those muscles attach to the pubic synthesis, which is the front part of the pelvis. They wrap around the urethra. They help to support the prostate, they support the penile structures. They wrap around the rectum and attach to the butt bone in the back, and then fan out to the sides.

Kind of like a basin or a bowl that sits in the pelvis. What happens is when it’s a nice resting area, those muscles support the prostate in the bladder right where they need to be. Once they get a little bit tight, right, you’re thinking about this hammock, you know, that hasn’t even been sat on yet.

That that really taut, that hammock, it really displaces that prostate in the bladder and actually moves it up a little bit. When that happens, that causes increased urgency in that area and displacement that makes those nerves of the bladder go, “wait, something’s happened, and I’m not sure what’s going on,” and that causes more urge incontinence to happen as well.

Bruce Kassover: Now let’s talk a little bit more about the prostate in particular, because that is so critical for so many people. What is the difference between different conditions like prostatitis and BPH? Yeah. And how can those different sorts of con and also we can talk about prostate cancer and how do those different sorts of conditions, how common are they and how do they influence urinary health?

Aleece Fosnight: Yeah, absolutely. So chronic prostatitis or acute prostatitis isn’t as common as some individuals would like to think. It definitely is getting more awareness as, again, we’re having more conversations about things. The American Urology Association has a patient-facing website that is great with so much information.

So I always recommend people going there to get some, some really good information as well. But when we think about prostatitis, that’s inflammation of the cells of the prostate themselves. And so this can happen because you’re sitting too long is the biggest thing. So it’s adding too much pressure there in the perineum up into that prostate.

So like my truck drivers that drive long distances, my cyclists that are sitting on those seats tend to have more chronic prostatitis. And then as folks get older and they’re not evacuating their prostate as much as through ejaculation, that prostate fluid can sit there stagnant and cause irritation and inflammation too.

There are also sexually transmitted infections that can cause prostatitis as well. So gonorrhea and chlamydia are going to be those two. So when we think about the difference between prostatitis, which again is inflammation of the cell of the prostate versus BPH or benign prostatic hyperplasia, which means that there’s more of those cells that have grown in, in that area to create more volume and more expansion of that prostate.

Now, when those cells get inflamed through prostatitis, they have a swelling experience that that can place increased volume in that area and make it feel very uncomfortable to sit, may cause you to go to the bathroom more frequently, more urgently, or even have a weaker stream because that swelling is narrowing that urethra that’s typically treated things would go back to, to what we call, like, kind-of normal in terms of decreasing that inflammation either through antibiotics, ibuprofen, ice to the area, pelvic floor exercises can be really helpful there. But BPH, again, is going to be, you’re multiplying the cells in that area.

Bruce Kassover: So for those people who are experiencing BPH, what sort of symptoms can they normally experience?

Aleece Fosnight: So, and the difference too between prostatitis and BPH, Prostatitis is going to acutely happen like within in days, like you’ll notice significant decrease. Stream strength, not being able to empty out your bladder. A lot more like pain and pressure in the pelvis versus BPH where it’s a lot more gradual, that prostate tends to start growing or that hyperplasia starts to happen around age of 40 and then continues to, to kind of go from there. Now, depending on folks’ genetics, anatomy and sometimes we just don’t even know.

I think BPH is still one of these medical mysteries that we wish that we would know a little bit more about, like why it happens, how we could stop it in the first place. Some of it can be testosterone dependent, secondary to testosterone, converting to dihydrotestosterone, which has been directly linked to prostate health, but can also be damaging. If you get too much of that conversion over that, that can encourage that prostate to grow. But again, I usually tell folks, you know, prostates can grow three different ways – grow in, up or out, and “in,” typically, it’s going to be the thing that causes the most difficulty because it narrows that urethra.

But “up” is definitely something that’s going to cause concern too. Just displacing the volume that you have there, in the bladder. So yes. So those would be the types of things that, this is kind of gradually what you’re seeing over years of that urinary stream starting to slow down. Maybe you’re feeling more pressure getting up at night to go to the bathroom, too, is another sign. And then some of this urgency as well is what we see.

Bruce Kassover: So how do you treat them, any of those?

Aleece Fosnight: Oh goodness. Yes. So typically, right, we’re trying to figure out why and what’s actually happening. So I like to do two diagnostic tests, a cystoscopy, which is a tube that has a light in a camera on the end of it that we insert through the urethra along with some nice lidocaine jelly so we can numb it up to make it easier and less uncomfortable for folks. But that gives me a really good idea. I get to look along the urethra and make sure that everything looks okay. Is everything open? And if there’s some narrowing, where is that narrowing coming from? Is this a stricture? Is this prostate enlargement?

Is this something at the bladder neck that we’re seeing? Is this a bladder stone that is blocking? Listen, there’s all sorts of things that could do that. So for me, I want to make sure you know exactly what’s going on, and then I compliment that and pair it with what’s called urodynamics. And urodynamics is just a fancy term for a bladder function test.

And what we do is we insert a catheter, teeny tiny, about the size of a spaghetti noodle, and it has a pressure electrode on the end of it, and that goes into the bladder when we. Fill the bladder up, we get a chance to see what’s the pressure in the bladder and if that pressure goes up and when that individual wants to urinate and the flow of the urine coming out is diminished along with that increased pressure in the bladder. That’s the recipe to say, oh, this is BPH going on here and let’s start talking about some medications kind of to start with, right? People like to take a pill to make this better. So for folks struggling with being able to open up their urethra too, right? So that’s going to be Flomax. Tamsulosin, Rapaflow, all of those medications to help to actually open up that middle of the urethra to allow almost like, not necessarily unclogging it, but just kind of opening it up.

I usually tell folks this is like if you had a garden hose, right? And you have your hand on the outside and you’re putting all of this pressure on it, it’s narrowing it, right? It’s not clogged. You’re just narrowing it. And so what that does with these medications is help to relax some of that tension that’s on the outside so that we can open up that urethra so you can empty out things a lot better. So these are typically going to be what we call, like, your alpha blockers. If we are concerned that the entire prostate is getting bigger, you can do that with a, like a prostate ultrasound to really get a good measurement, too.

So say, you know, we’ve put you on this medication to help open up things. That’s usually kind of first-line medications. If that’s not working as well, then what we can do is take some medications like Finasteride Dutasteride, which is like your Avodart. And what that does is it helps to shrink the meat of the prostate. So remember those when we talked about BPH and all of those cells that are swelling in that, in that area? That can definitely help to shrink some of those cells and stop that conversion of testosterone to DHT, which is that dihydrotestosterone. So those are going to be your medications that are what we call five alpha red reductase medications, acting at the meat of the prostate, trying to shrink it.

Can you do both? Absolutely. For my folks who are struggling with some erections also, Cialis also has an indication to help with BPH, too. So kind of a two-for-one special is very, very helpful there as well. So those are kinda like your kind of like, basic introductory ones.

I live in the Asheville area, so we have a lot of folks who want more natural, complementary alternative medicines. And saw palmetto has traditionally been something that a lot of people ask me about in terms of, does it work? What, what do the studies look like? And this is one that’s actually been fairly studied and has some promise. Just like I tell everybody, just like medications don’t always work for everybody.

You don’t come with a manual. For me to turn to page 34 to say, “Oh, this is the medication that you need.” Sometimes it’s a little trial and trial and error. So saw palmetto can be a really good one, too, and it’s commonly used. I like some saw palmetto, too. If we know that folks are starting to have some prostate concerns or some urinary stuff, it’s a great one to help slow down potentially that growth of the prostate. I am very much prevention-focused. That’s just how my brain works versus reactionary when a problem is happening. You know, I tell people, you know, we don’t wait for your, you know, first heart attack to happen before we prevent the next one, right? We want to prevent it in the first place. The majority of men will have some form of prostate enlargement at some point in their life. So when we talk about optimizing prostate health, supplements are a really good one to help. There’s been some promise with pumpkin seed too. That can be really helpful.

Stinging …sting…stinging nettle, I think is stinging nettle is the other one that has shown some promise as well. So those are the ones that I tend to look for in any kind of prosthetic supplement that can be really helpful for those folks as well.

Bruce Kassover: Why is it never the chili dog that’s the right supplement for these things?

Aleece Fosnight: You know? I know, right? Maybe we could just figure out how to put saw palmetto into the chili dog.

Bruce Kassover: Now, but I do want to, it sounds like there is a really broad range of therapies that are out there for people to try and, I know that there’s no one, you know, silver bullet, but I’m wondering if, you know, people start to go through and try some of the variety of options that are out there.

Can you talk a little bit about the success rate? I mean, if, if I’m a typical patient, maybe there’s no such thing as a typical patient, but you know, if I’m a typical patient and I’m going to a physician or I’m going to a, you know, a caregiver and we start to run through some of these options, is there generally a pretty decent prognosis?

Aleece Fosnight: I definitely say there definitely is. And sometimes we have to, oh, be a little bit aggressive, too, at some point. There’s been a handful of cases where some of my patients have seen the symptoms. Again, w’re just embarrassed to go, you know, talk, talk to somebody. So what happens is they, then their urinary system completely shuts down and they’re not able to urinate at all.

And these are, these are folks that struggle sometimes too, like what I said with constipation or this high tone pelvic floor. So it’s just this recipe for disaster. It’s all compounding on itself. So for those individuals, you know, sometimes we have to do a little bit of rehabilitation with their bladder, too, if it gets too stretched out for it to start working, working again, which is another reason why it’s so important to have these conversations early on, to protect the function of your lower urinary system. So overall, Flomax is a really good medication or a lot of these BPH medications can be really helpful. I would say, you know, the majority of the time my patients get some improvement, whether that’s 90%, maybe it’s 85%, somewhere around there. The thing about it too, though, is the prostate sometimes can outgrow, right, that Flomax, and there’s only so many receptors in that area that those medications can actually stimulate. So that’s why it’s important for follow-up, to continue to ask these questions to monitor what we call like a post-void residual, where we’re checking the bladder with an ultrasound to make sure that they’ve emptied out all the way.

And so there’s lots of things too, I just don’t, you know, we just don’t put people on medications and say, “See you back in a year.” I want to ask, “Is it working and are you having any side effects?” I mean, that’s the biggest one, too. When we talk about these alpha blockers, it can make folks kind of dizzy and lightheaded.

It’s a smooth muscle relaxer and that’s one of the reasons that it works in that regard. I usually have folks take it at bedtime. And, you know, again, these alpha blockers, because they work in the middle of the prostate, that’s where the ejaculatory ducts are. So retrograde ejaculation can happen also, if you don’t tell somebody that, oh my goodness, they get, there’s a, there’s a lot of concern, like, “Is something, is something wrong with me? What actually happened?” And especially our folks that are still trying to retain their fertility, that’s a really good conversation to have too, is that that seminal fluid is not getting out in the correct direction that it needs to.

Now on the side of our like five alpha red reductase medications, so Avidart, Dutasteride, Finasteride, Proscar, those types of medications. The thing about it is because we’re focusing on not just relaxing the muscle, but we’re trying to shrink the cell, is what we’re trying to do, and they do that by blocking that conversion to DHT in that area, which sometimes can lead to increased estrogen levels, so it may decrease libido. Sometimes some male breast development may happen. So it’s so, so important to have those conversations of what these medications are, yet it’s great, but side effects are going to be really important to you.

But for the most part, starting, starting guys that have some beginning stages of that prostate enlargement can be really helpful and successful. And sometimes we just don’t know how long it’s going to be. I’ve had lots of guys that, they were on it for years and years and years and it was working just well for them and they weren’t having any, any issues, but the problem is too, is if we wait too long and that prostate outgrows those medications, we need to start looking into other options and treatments that might be really helpful.

Bruce Kassover: I would imagine that knowing that these are generally helpful treatment methods is something that could encourage men who are reluctant or on the fence about going out and speaking up to actually go out and do it knowing, hey, you know what, I’m going to have to bite the bullet, but if it’s actually going to work, then you know, it’s worth a little bit of temporary embarrassment.

Aleece Fosnight: Absolutely. And these medications have been around for a long time. So the other thing that I always take into consideration with my patients is cost, right? You know, it’s great if this medication’s going to work, but are they even going to be able to access it? Is that going to be a barrier for them? So the majority of these medications have been around for quite some time. They work really well and most of the time insurance is going to cover a lot of these medications.

Bruce Kassover: That’s even better. Now, one thing we haven’t spoken about is prostate cancer and prostatectomies and things related to that. Maybe you can talk a little bit about that briefly.

Aleece Fosnight: Yep, absolutely. So we, when we take into consideration with our prostatectomy is something that would be an option for an individual, we think about how aggressive is that prostate cancer. Well, you may hear like the Gleason score and that’s going to be at the different areas of the cellular changes that have occurred with that prostate cancer.

How much involvement of that prostate cancer is in that prostate, right? This is just like a little focal area or is, you know, half the prostate involved? And then life expectancy is going to be a good one. We’re not going to do a prostatectomy on somebody in their late seventies when we might be able to manage it just fine with radiation and other types of like oral chemotherapies for prostate cancer, you know, down the road.

So somebody who is younger, but the problem for that being is they’re younger, right? They’re going to have to live with the fact that their prostate’s been removed for 20, 30, 40 years if that’s the case. So prostatectomy are great. We used to do them a lot in the past until we had better treatment modalities, like I said, radiation, chemotherapies, which it can be an oral chemotherapy, sometimes testosterone deprivation, Casodex or bicalutamide is one of those medications. But again, everything, everything comes with risks. And when you’re taking out a huge supporting factor, like the prostate is to the bladder, incontinence is almost always going to happen.

I will say that the majority of my patients post-prostatectomy having incontinence. And so, you know, understanding that at the beginning, right? I never want to falsify information to patients. I don’t want to get their hopes up, “Oh, maybe this will happen.” Or the way that somebody does their prostatectomies that, “Maybe this will it, it won’t happen to me,” but I will, I will tell you for the first four to six weeks, the majority of folks post prostatectomy will have incontinence.

And that it’s allowing the area, that bladder neck to heal and also those pelvic floor muscles have to engage in a different capacity also. So it’s just retraining how that, how that all works. So utilization of a pelvic floor physical therapist pre- and post-prostatectomy is so, so helpful. I think we underutilize our pelvic floor physical therapists a lot and a lot of pelvic floor physical therapists work with women, but few, unfortunately work with men, and so we’re trying to change that. And I’m, you know, very vocal about utilization of pelvic floor physical therapists. We have two here at our office that both work with men and everybody. If you have a pelvis, we will, they will work with you. Which is really, which is really nice, but there is, there is a lot of hope that’s associated with that, that prostatectomy and the incontinence that comes, comes with it.

I usually tell folks, right, this is, this is a stepping stone. This is just a small bump in the road. We know that this is going to happen. We’re going to make sure that we talk about the important incontinence products for folks to use during this whole process. And it’s really good to assess. Pre is what I tell people also, so that if you can go ahead and get set up with a physical therapist before you have your surgery, we know too if there are some discrepancies that are already there.

So what if you already have a high tone pelvic floor and you have some other things that are going on that you’re not having good core coordination? We can go ahead and work on those things ahead of time and almost like prep, prep a little bit more so that we can optimize how you’re going to heal afterwards, and those exercises that we want you to do, as well.

Bruce Kassover: So do you find that after a certain period of time, most men who’ve had a prostatectomy do return to being continent again? Or is it, are many of them left to deal with symptoms for a longer period of time?

Aleece Fosnight: I would say that the majority actually get a good portion of their incontinence resolved.

I tell folks all the time, I want you to have more good days than bad days. I can’t promise that you’re going to have a hundred percent resolution, but for the most part, we want, again, want you to have more good days than bad days. And I would say that the majority of that happens, I think. Men need to be motivated also to do those like Kegel exercises, pelvic floor exercises, post prostatectomy.

Also, you know, I have, I have some folks again, body habitus can make that, you know, really difficult if you have increased abdominal pressure that’s placed on your bladder and your pelvic floor. Sometimes it’s a little bit more difficult to engage those muscles and allow for more control to happen depending on the involvement of the prostatectomy also.

And if there is additional radiation that has to happen later down the road, so, so layered and so, so individual when it comes to these types of interventions. But I would say, yeah, for the most part, by a year in, after post prostatectomy the majority of patients that I have seen in the past are dry.

Steve Gregg: Now, you know, I think when women go into and talk to primary care, only about 62% of the time is she referred to a specialist, urologist. But 78% of the time when men address this issue, they seem to be referred to urologists sooner. That said, I’m not sure men are quite as adequately prepared.

We think the reason for the difference is because of questions that could arise around prostate cancer. That’s a hypothesis. We don’t know that for sure. I think we need to be doing more, particularly around if you have a total prostatectomy, you’re going to leak. And it may be transient or it may not be.

But we just did a webinar last week and half the men participating had had surgery and leaked and said, “Nobody ever told me this.” We know that’s most likely not true. They just didn’t hear it. But I think we need to do a better job with, “There’s a good chance you’re going to leak and here are your options…”

Would you agree with that?

Aleece Fosnight: Oh, wholeheartedly. And that’s, you know, that’s the thing, too, is, you know, I know so many of my colleagues talk about these sorts of things, and we talk about the side effects, but we are so used to letting it just roll off our tongue, right? So this is what’s going to happen and so X, Y, and Z and we’re going to choose set up and da, da, da, right?

That patient only hears one thing, and they’re going to hold onto the one thing that concerns them the most. And if it’s prostate cancer, it’s, “Am I going to live through this?” Right? “Am I going to be around to be with my partner, to be with my family, to be with my kids? What does that, what does that look like?” The incontinence piece is not always in the forefront of their brain.

So, you know, having like a nurse educator finding other groups of folks that have had prostate cancer, right? You want to talk to the people that have gone through it, I think is the most enlightening of like, this is real and these are real things that can happen, right? We have all of the stuff that, you know, research shows and clinical studies, whatever else, but clinically and real life, sometimes they’re two totally different things.

And so I think it’s really, really important to know that these things can happen. Because you’re right, I get that all the time. “Well, my provider never told me…”

Steve Gregg: Yeah. I think it’s we, we’ve heard stories with physicians saying, “I give the same speech 50 times a day and I’m sure it’s perfect.” Yeah. And then, and then they’ll look at you and go, “But I’m not sure that what I said is what they heard.” Mm-hmm. Particularly as they start to walk up close to cancer.

Aleece Fosnight: Yeah. Yep. Exactly. And I really encourage a lot of providers to do the pause method, like when you just said something really big to that person and get, we are in the room 20 times a day having the same conversation.

So we’re used to having this conversation. We’re in it all the time. They are not. Right. They’re, this is the first time that they’ve heard it. They’ve had to worry about it, whether a family member had it or they knew that their PSA was different or they had to go in for a prostate biopsy that’s on the table and that is super scary.

And again, sometimes they just, they just don’t know. So I like to take the pause and say, “I know this is a lot of information. We’re going to go over this a lot more,” and I tend to have protocols so that, and handouts and booklets and resources for folks to look at and go, “I hear you.”

I think the other thing, too, that can be really helpful for a lot of providers is creating YouTube or other type of video content that your, that your patients can go back and look at. I know that Urology Care Foundation is really good. Our Sexual Medicine Society of North America is really good.

We’re going to start amplifying a lot more patient-facing education. So then you can go back and listen to it over and over again so that you, you know, you don’t have to make an appointment or you don’t have to go searching for it. It’s right there. You’ve got it, got it in front of you. And then I always set folks up for pelvic floor physical therapy, and they always have a choice, but I usually say, we’re going to go ahead and send this referral now.

This is going to happen and that can help to, so that there is something that’s happening outside of that office visit, because they’re going to get a call from that pelvic floor physical therapy office and they’re going to go, “Oh yes, Aleece talked about this incontinence that’s going to happen. Okay, yes, I need to make this appointment.”

So it’s being able to also help, you know, aid through those types of things and those referrals. And there’s a lot of, I have a whole pelvic floor rehab program that I do with a lot of my prostate cancer patients afterwards too, so that they’re, and they’re meeting their team, also. So this is your social workers, this is mental health. This is a lot to take on in terms of that mental health capacity piece of it. We’re setting you up with the pelvic floor physical therapist. Maybe if we’re talking about other comorbidities that are going on, we get you set up with those folks. So I try to have a game plan in place to start with, and then we kind of build from there.

Steve Gregg: I would encourage you to look at some of our resources. Ours are really looking at patients and are written at the right kind of level. So we hear a lot of, “I actually understand what this means,” and we do an awful lot to help them both have a conversation with their doctor, so if they are able to prepare, you know, read in advance.

And in some cases it’s actually, and you’ve probably seen this, how to make sure the doctor hears you with your concerns. And, and then, “How do I translate what he just said to me?” So, “Okay. I understand what he said, but it doesn’t, I don’t know what any of that means.” Yeah, so we have some really nice resources that we’ve developed in response to patients going, “What do I do and where do I go and what the heck is this?”

Aleece Fosnight: Yes, I love your website and utilize it so, so often. So I, I’m very grateful to be able to send patients your way. Also, it’s very easy to get through, like you said, very intuitive. So it’s, it’s not having to shuffle through a lot of, you know, clicks to get to where you need.

Steve Gregg: You know, we created a forum. You have to sign up to participate. You don’t have to sign up to read. Because people came to us and said, “I want to talk to someone, yeah, yeah, yeah. You people are all really nice and there’s a really great amount of information. I want to talk to somebody like me.”

Yeah. And so they get to talk to somebody who’s, who’s done it now, they’re not allowed to provide medical advice. We don’t typically allow selling. So it’s unbiased information. And it’s monitored. So we watched that pretty closely to make sure that, you know, the community is well, the community’s really great at policing itself, but is really good at being encouraging, being inclusive, and guiding people to the right kinds of information.

Aleece Fosnight: It’s so, so important. We see this all across the board no matter what the condition is. If you have other folks that have gone through that same thing, right? It definitely is much more helpful to have a better understanding. You get a different point of view. There is definitely this level of trust.

And that other person, cause they’ve gone through it. “Here are these resources. This is what I found was helpful.” You know, we find this in like mom’s groups or breast cancer, you know groups queer communities. So yes, prostate cancer groups or any kind of just incontinence. It’s going to be really helpful to have that comradery with your peers.

Bruce Kassover: Coming up in the second half of our conversation with Aleece, we talk about how men can choose and use absorbent products to treat their symptoms along with how to manage the anxiety and mental challenges that so often come with the condition.

Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at NAFC.org.