Today we're joined by Carolyn Hampton, a patient who had such severe overactive bladder that she was going to the bathroom urgently every hour of the day and night. Medication only did so much for her, but she found real, lasting relief through the InterStim system, a tiny implanted device that helped improve the communication between her brain and her bladder. Listen to learn more about what she was going through and the journey she took to drier days.
To learn more about InterStim systems by Medtronic, click here.
To learn more about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram, Twitter and Pinterest.
Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/
Say good-bye to leaks and pads and hello to confidence! Elitone® is the only FDA-cleared treatment for stress, mixed and urge incontinence. As an external, wearable treatment, it’s the easiest and most effective thing you can do to get back to a regaining control of bladder leaks. Go to www.elitone.com and use code NAFC24 for $25 off.
If you’ve been informed, inspired or encouraged by any of the guests and stories you’ve heard on this podcast, now is your chance to give back to the community by sharing your story. We’re looking for real people who’ve had real victories in the fight against incontinence to send us their best piece of advice for living a life without leaks. Please call 1-800-252-3337 – and leave your hint, tip or bit of help at the tone.
Today we're joined by Carolyn Hampton, a patient who had such severe overactive bladder that she was going to the bathroom urgently every hour of the day and night. Medication only did so much for her, but she found real, lasting relief through the InterStim system, a tiny implanted device that helped improve the communication between her brain and her bladder. Listen to learn more about what she was going through and the journey she took to drier days.
To learn more about InterStim systems by Medtronic, click here.
To learn more about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram, Twitter and Pinterest.
Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/
Say good-bye to leaks and pads and hello to confidence! Elitone® is the only FDA-cleared treatment for stress, mixed and urge incontinence. As an external, wearable treatment, it’s the easiest and most effective thing you can do to get back to a regaining control of bladder leaks. Go to www.elitone.com and use code NAFC24 for $25 off.
If you’ve been informed, inspired or encouraged by any of the guests and stories you’ve heard on this podcast, now is your chance to give back to the community by sharing your story. We’re looking for real people who’ve had real victories in the fight against incontinence to send us their best piece of advice for living a life without leaks. Please call 1-800-252-3337 – and leave your hint, tip or bit of help at the tone.
Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. 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. I'm your host, Bruce Kassover, and joining us again today is Steve Gregg, the Executive Director for the National Association for Continence. Thank you, Steve, for joining us. How you doing?
Steve Gregg: Now, I'm great, Bruce. You know, it's really exciting to have a real patient come and be willing to share their story with us. So I'm really looking forward to this today.
Bruce Kassover: Me too. I think that this is a story that's really going to resonate with an enormous number of people. Joining us today is Carolyn Hampton, who is going to be talking with us about her experience with overactive bladder and how she overcame it through a therapy called InterStim, which is from a company called Medtronic.
In fact, it's been so, so successful for her that she's become an ambassador for Medtronic talking with people about what InterStim is and how it may be a benefit to them. So thank you for joining us today, Carolyn.
Carolyn Hampton: Well, thank you so much for having me. I am looking forward to the conversation today.
Bruce Kassover: I understand that we're going to be talking a little bit about your treatment journey to find relief for your symptoms of overactive bladder. And before we actually get to the end, I'd like to start at the beginning. Can you tell us a little bit about how you first recognized you had a problem and what the symptoms were sort of like at the very beginning?
Carolyn Hampton: Oh, absolutely. In fact, I don't really think originally, I thought it was a problem. And it's really hard for me to people ask me that question. It's hard sometimes for me to say when I really said, “Oh, I have an issue,” because I seemed to always have had bathroom issues. Even as a kid, I was the one who always had to go to the bathroom more than others.
My mother always cautioned me, you know, later in the evening, “Don't drink so much, you know, that way you won't have to worry about going to the bathroom, especially at night.” Right. I attributed that to the fact that I had a tiny or a small bladder. In fact, as I got older, I kind of referred to that as “TBS,” tiny bladder syndrome, because on some level, my bladder issues were normal, or so I thought, at least.
Bruce Kassover: You know, that's actually something that we hear a lot of is that people don't really have a sense of what is normal and what's abnormal. And there's also a lot of mythology people believe that well, you're talking about having happening is at a younger age. But you know, for example, a lot of people think that, you know, as you get older it just happens, it's just something that that you can't avoid.
So there there is a lot of resistance to even recognizing that there's a problem. We know that, I mean, Steve, you can correct me, how many years do we know that it typically is before a person seeks help for their symptoms? It's years, isn't it?
Steve Gregg: Yeah, we've seen data that suggests from the onset of symptoms to the time, particularly a woman, seeks treatment or speaks up to a physician is on average about seven years.
Bruce Kassover: That's insane that people will literally suffer with a condition that is, for an enormous number of them, treatable – really, really treatable – for seven years. So you didn't even realize that there was necessarily a problem? What motivated you eventually to go try and find, seek help?
Carolyn Hampton: Well, continuing on with that line of thought, though, and you talked about the seven years, we think that it's normal, and it's also something that we don't talk about because it's taboo, because it's secret, and once you get to be past three years old, and you're potty trained, nobody thinks that there's really an issue at all. But for me, I still found that even though I was going to the bathroom more than other people, I still felt it was normal because I still wasn't using any kind of bladder control pads, right? I was just going to the bathroom a little bit more often than people. I didn't have an urgency issue, just a frequency one, that to me wasn't that bad. So I was managing it. Even when I got older, got pregnant and people said, “Oh, women, oh, you're going to have to go to the bathroom all the time now.”
I never found it to be any different. So it was well in my 40s that now I'm recognizing that, you know, this isn't right. This isn't normal because now I'm seeing an urgency issue along with the frequency issue. And that's when it kind of clicked in my head that, well, maybe it's not Tiny Bladder Syndrome. Maybe there really is something else going on. And that's when I started talking to my doctor about it.
Bruce Kassover: How easy was that? Was it, you talked about how it's taboo and it really is. I mean, people are ashamed, they're afraid of bringing it up. Are you one of those people who doesn't have a problem talking about that with a physician or did you find it difficult also?
Carolyn Hampton: I'm the kind of person that talks about everything, so it wasn't difficult for me, but I will also say I also had a relationship with my doctor who made talking to her about anything very easily. So, we had built this rapport with each other over the years that it made it simple for me to say, “Okay, Dr. Wilder-Dyer, I'm sorry. But I got to talk about this problem,” and she's like, “Okay, let's listen,” and so it made it easy for me because of who she was. I don't know if had been a new doctor or maybe even one that I just didn't have that relationship with that I would have brought it up because it's that secret-issue problem.
Bruce Kassover: I'm very happy to hear that you were able to talk with your doctor, but even recognizing that as somebody who's, somebody who's really able to be open about these things, knowing that there might be situations where you'd be a little more reluctant is, you know, is interesting because we know how many people really just refuse to mention it to family, to friends, to physicians. So I guess having that relationship is really important. That was, that's excellent. So you went to the doctor, you discussed the problem. What did you first do to try and address it?
Carolyn Hampton: Once we talked about the fact that, you know what, I really am going to the bathroom a lot more and I had started getting the bladder control pads. And in fact, By this time, I've got bladder control pads pretty much everywhere. They're in my office, they're in my purse. I've got extra underwear in the car. I'm ready for any type of accident that I might have. I'm prepared, I'm hoping I don't, but again, those are those things that are in the back of your mind that you're like, “Okay, I got to be ready for this.”
So after telling her what I was doing and what I was feeling, She said, okay, well, let's try a couple of things. We started with Detrol. Detrol was you know, a prescription medication. And I believe by this time, too, I had noticed, you know, drugs are being advertised on television. So I think that kind of helped me to go, “Hmm, maybe this is something I should talk to my doctor about and not just suck it up.”
So in talking to her, we ended up, she ended up putting me on Detrol. And that worked, sorta, kinda. Wasn't consistent, it would work and it was almost, for me, I felt like my body got used to it and then it stopped working, you know, it kind of got used to it and then it'd be like, all right, yeah, you can take that pill if you want to, but I'm still going to, you're still going to have this problem.
So I would take it, it would eliminate my issues for a little while, maybe a month or so, And then I'd go right back to where I was. So I'm going, well, if I'm going to have the problem, then I'm not going to take it because drugs are drugs are drugs. And I don't need to have any thing in my system if it's not going to work for me.
So I stopped, I'd stopped using it. And then I'd take it whenever I was going to go out of town. Like, okay, you need a little extra and it would work. It worked a little bit. So that became my mode of operation. Only take it when you're going to really need it. Don't take it all the time.
Bruce Kassover: I can understand that. That does make sense. I mean, when you were taking it regularly, did you have any issues keeping track of your medications? That's, you know, one of the things that a lot of people don't realize is that even if a medication works perfectly for you, it only works when you take it.
And my own example is if I've ever, you know, if I've been sick and the doctor prescribes me antibiotics and I have to take a course of antibiotics for like, you know, five days or something, I guarantee that on day three, I'm sitting there at about 11 o'clock saying, did I take my pill this morning?
And I have no idea if I did or didn't. Because taking medication as directed isn't always easy. And I'm wondering if that's something that you had an experience with or if you were fortunate enough to be really good in staying regimented that way.
Carolyn Hampton: I was pretty regimented, but again, I was younger. I'm probably in my forties then. So it was a little bit easier for me, but I would say now it would be, if I had to do that now, it would be very difficult for me because of course, now, as I'm older, I don't, I don't take a lot of medication. In fact, I don't take any prescription medication, but I take supplements. So I take the vitamin D and fish oil, vitamin C, I've got a multivitamin. I'm taking calcium and there are days I go, did you take that one? And I've got the little pill, little pill boxes with the days of the week on them. And sometimes you look at that and go, “Oh, I'm not sure I did.” And I was like, “I don't want to take it again.” So I don't take it. I can understand where people, especially at my age now would have a problem knowing for sure if they took it or if they didn't.
Bruce Kassover: Oh, you know, you said something that just reminded me, because I'm in the same boat, I have, you know, all of my, my supplements and medications and I, you know, I set up a little, little pillbox because otherwise I'm sitting there opening up, you know, 55 different jars a night, you know, and the folate and all that sort of stuff.
But I'll tell you what, having to find a pill box that holds everything, if you want to talk about feeling old every time you look at that pill box, it's like, “Oh my God, I feel like I'm George Burns all of a sudden.” So you found that you were, so you're taking the medication when you needed to, and was that, and that was working for you.
So did you decide at some point that you wanted to see if there was a different treatment or were you satisfied that this is just going to be the way that you go moving forward?
Carolyn Hampton: For a while I was, I was like, “Okay, this is, this is the hand you've been dealt. You got a situation with your body, with your bladder. So this is how you're managing it.”
And I was managing it and it seemed okay. But I noticed it got worse. And by what I mean by that is, I am now going to the bathroom almost every hour. 45 minutes to an hour, especially at night, no matter how much I drank or not drink at night.
Bruce Kassover: You were getting up hourly.
Carolyn Hampton: Yes. To the point that…
Bruce Kassover: You must have been a zombie.
Carolyn Hampton: Oh, oh, here are two things to the point that I would go to the bathroom, sit on the toilet and pee and put my head in my hand and go back to sleep because I knew I was going to have to go again. So I would just sit there. So I might do that a couple of times and then go back to bed.
And what that did, just like you said, I'm exhausted, right? Cause you're not getting that really good night's sleep. So that became a really big issue for me. And in fact, it's, it's interesting. You, you mentioned that because when it was time for me to get the InterStim device, having to go through the insurance and get it approved, they didn't approve it.
I wrote them this lovely little nasty letter to explain to them how the quality of my life was suffering because I could not sleep because I was getting up every hour to go to the bathroom. So that became a really big issue overall. And that was the catalyst I would say to make me go back to my doctor and say something.
And I really thought it wasn't so much the bladder. I'm a cancer survivor. Okay. So I'm thinking there's a tumor growing on this bladder somewhere. I've got something that's just growing and pressing against my bladder way to the point that now I can't, and I'm, I can't control it at all. I've got the urgency and the frequency is off the chart.
So that, like I said, I'm going to the bathroom just about, you know, 20 times a day, if you will. That was the catalyst for me to say, I have to go do something. I need to, I need to take this a step further and do something.
Bruce Kassover: Okay. Well, now there, there were so many things that you just said that I wanted to touch on. First of all, very happy to hear that you're cancer free, I'm assuming.
Carolyn Hampton: Yes. Yes. Yes.
Bruce Kassover: It was ovarian cancer. Is that what it was?
Carolyn Hampton: Ovarian cancer and then 8 years after that I got breast cancer, but caught early and I'm still here to tell that tale as well.
Bruce Kassover: Wow. I mean, I guess that's, that's a whole other podcast, but that's, so, yeah, I could definitely imagine why, why that would have come to mind is that, yeah, this is, this is not just a bladder issue.
It's, it's something even worse. Wow. Well, I'm sure you must have been relieved to discover that that wasn't the case at least.
Carolyn Hampton: Absolutely.
Bruce Kassover: Excellent. So now you went to the doctor though, because this absolutely is, you cannot continue, you know, literally going to the bathroom 24 times a day. So you went to the doctor and you mentioned InterStim which is a type of therapy that's, that's very different than medications. And so did the doctor introduced this to you? Was this something that you had no idea about beforehand?
Carolyn Hampton: I had no idea about it. In fact, at this stage and going to the bathroom as much as I was and knowing my history, and again, this goes back to the relationship that I had with my doctor, she knew my history, and at that point she said, “Okay, this is past my level of expertise. It's time for you to see a specialist.”
So I commend her for saying to me, “We're not going to just keep trying more drugs. Right. Listen, we're not going to do that. I'm going to get you to someone that can really concentrate on this specific area and find out what's going on.” So I, that's when I went to a urologist.
Bruce Kassover: Okay, very good. And so the urologist is the one who introduced you to the idea of InterStim therapy. Is that right?
Carolyn Hampton: Yes, but not the first urologist. The first doctor that I saw wanted to continue treatment with drugs. And we tried a couple of different things. I was willing to do that. We tried a combination of drugs. One I want to, I can't remember the name of the first one. And then we tried that in addition with something else. And at that point, he said. Because I didn't get any better. He said, “You know what? I need for you to meet with another doctor in the practice and discuss this a little bit further because I think it's more of a serious problem than what we're seeing.” And that's when I was introduced to InterSim.
Bruce Kassover: Well, you know, this sounds really great. I like the fact that you have doctors who are really working sort of collegially with each other to try and help you get the right outcome. And, you know, I guess, you know, medication may not have worked for you, but it does sort of make sense, and I think it sounds very, you know, plausible, good, reasonable that they would have tried, you know, different medication regimens because, you know, medications are great for many people.
A lot of them, you know, there's a reason they're out there, is that a lot of people have good results. You just happen to not be one of them. So, the doctor introduced you to InterStim, which is, as I said, it's a therapy, it's by a company called Medtronic, which is just about the world's largest, or one of the world's largest manufacturers of all sorts of medical devices.
So, you know, it's coming from people who really know what they're doing. But what is InterStim, you know, as a patient, what did they explain to you what InterStim was and how it works?
Carolyn Hampton: What they explained to me was that I had a disconnect between my brain and my bladder. The nerve that connects those two was misfiring.
So my bladder was getting mixed signals of when it was time for me to go to the bathroom. And it wasn't giving me the signal in enough time that I could leisurely take a nice stroll to the bathroom. So what I had to do was, when I got that signal that your brain says you need to go to the bathroom, it was “drop everything you're doing and go right that second.”
So if I'm frying chicken up, the chicken's going to burn. If I'm watching television, I can't wait for the commercial to come on to go to the bathroom. I want to see that play or that football play – I can't see that, I gotta, I gotta wait, I've got to go right now.
I can't be having the conversation with you right now.If I'm on the phone with you, I can't say, well, keep having that conversation with you and say, well, I'll be through with Bruce in a few minutes. I've got to say, “Bruce, I got to call you back and hang up the phone,” or “Bruce, hold on, I'll be right back,” and drop it run to the bathroom and.
And, my grandmother used to do this and I thought it was so funny, and then I started doing it myself: Start stripping on the way to the bathroom. Because when I got to the bathroom, I knew that I’d be able to sit on the toilet right then and go. I didn't have time to undress once I got in the bathroom. I had to do it on the way. That was a big thing for me, big thing.
Bruce Kassover: You know what amazes me is that you talk about how it's brain-bladder communication. Normally, I think that if you ask most people the way that they would describe, you know, having to go to the bathroom is that it's something that feels like it's pretty much under your control.
You know, sure. Your bladder gets full and you get the sensation and you go, “Okay, I'm going to go to the bathroom.” But this sort of reminds you of the fact that your body will do what it wants to do, whether or not you consciously want it to do it, you know there's just, there's, there's some sort of a misfiring or a miscommunication and you just don't have control. It's amazing.
Carolyn Hampton: Absolutely. And what this device does, it calms that nerve and gives you that signal when your bladder is almost full and says, “Okay, you need to think about going to the bathroom pretty soon.” So I can go, okay, you know, I'm going to watch this television show. Wait till the commercial comes on, or “Bruce, I'm going to continue my conversation with you.” Cause I know we're not going to talk for an hour. We're going to talk for a few more minutes. You know, you got something to say and I’ve got something to say and I’ll finish that and I’ll leisurely stroll to the bathroom, you know, or I'll finish cooking my meal and turn off everything. And then I'm going to go to the bathroom and that's what's going to happen.
Bruce Kassover: Which is good, because if you're, if you had to strip down while you're cooking, you know, you don't want to get splattered or anything because that's going to be very painful.
Carolyn Hampton: Exactly.
Bruce Kassover: Yes, and now you mentioned that it calms a nerve and you know, for the, for those people who are just being introduced to this, I did want to mention that there's this particular nerve, it's called the sacral nerve, and you know, you don't really need to know anatomy or anything, but the reason why I mentioned it is because this class of treatments is called “Sacral Neuromodulation,” which just means that it's, you know, addressing the sacral nerve, and InterStim is probably the most well-known, it's the oldest, most widely used form of sacral neuromodulation.
There are others out there, so, you know, people may have heard or received treatment that's been made by different manufacturers. But these, these sorts of approaches all try and address the same sort of thing. There are other nerves as well that can sometimes be addressed. There's the tibial nerve that there's some therapy that also is used to, to sort of reach similar sorts of results.
But, but yeah, it's really fascinating how by addressing a nerve that it really can change your entire life. So tell me how, what is the device, the InterStim device itself? I mean, it's, it's an implant, right?
Carolyn Hampton: It's an implant about the size, I don't know, maybe a quarter, fifty cent piece, somewhere in between there.
And my disclaimer is I'm not a doctor and I don't play one on TV, so my description is based on the conversation I've had with the doctor and what I experienced so, and the way they describe it to me so that it makes sense to me when I talk about the nerve and the calming of the nerve and then stimulation of the nerve and the communication that the nerve wasn't getting, my brain is not getting through that nerve, why I feel like I have to go to the bathroom all the time and I do.
I know there are some people that have the feeling and they don't have any urine. I have to go. There is urine there. So it's different for me, or every everyone is different. I should say everyone's bathroom issue is maybe a little different, but if it's relating to that nerve, this device seems to help with that.
Bruce Kassover: You know, I'm going to, I'm going to add the same sort of caveat that you just did because I am not a doctor and I don't play one on TV, nor do I play one on a podcast, so yeah, everything that we're saying is something that that patients definitely want to be talking with their doctors about to get a real, you know, with a trained physician’s perspective.
But that being said, so it's a, it's a tiny little implant essentially, and they put it in sort of like the, the right above your butt, right?
Carolyn Hampton: Yeah. Mine is on my upper right buttocks. So you're not sitting on it. You do lean back against it if you lean back in a chair or in your car or if you're in an airplane seat, but it's not poking you, it's not prodding you.
Bruce Kassover: That's cool because you're like the bionic woman at that point.
Carolyn Hampton: Absolutely. Yes. I like that idea. But now it is attached to a lead wire that is stimulating the nerve. And so I'm, I do feel, and what patients that have this feel, is a pulsation, a vibration, if you will. And for me, it's on my left vaginal wall. But it's not something that is that first of all, it doesn't poke or prod you. The device itself and the stimulation is not hard. It's very, very, very light. So you don't even notice it. It's in the very background of your life.
Bruce Kassover: So it's not that painful at all.
Carolyn Hampton: Oh no, not at all. You have the option to dial it up. Everybody's different. So your level of the vibration is going to be different than mine. So mine is maybe 1.2. Yours might be on 2.4. Everybody's different. But what, again, what my doctor said to me was you don't want it to be painful. So when I'm playing around with it, when I first get it and to make sure I get my setting correctly, I turn it to where I feel it, and then I turn it down one.
And if I'm still feeling it, I turn it down one more. And if I’m still feeling it, I go one more. Then if I, then if I don't feel it, I turn it back one. And that's where I have it very, very light.
Bruce Kassover: Oh, very good. Now, now when you got it, tell me if I'm, if I'm mistaken, before they even do the implant, don't they actually sort of do an in-office test so that you can make sure that it's delivering you the sort of relief that you're looking for?
Carolyn Hampton: Yes, they do a trial evaluation. And that's very important. And as an ambassador, when I'm talking to patients, prospective patients, I tell them that it's important to do. And it's a very restrictive evaluation. So bear with it, but it's so important because it will, number one, tell you whether the device is going to work for you, because if it's not going to work for you, then there's no reason to do the surgery, right?
So don't want to do that, but what it will give you is an idea of what you're going to be feeling with this. You'll know what that is. And it's restrictive because nothing is totally inside you at this point. So every time you walk, you move, you're active. You're going to move that wire a little farther away from the nerve. So if it's too far away from the nerve, the nerve is not going to be stimulated. So they want you to not be active for seven to 10 days.
So in fact, I remember when I got mine, he said he didn't want me to vacuum. And I was like, vacuum? No, because vacuuming meant you were going to be walking. So didn't want you to do any extra walking. So if you're someone that, you know, runs every day and plays tennis every day and goes and works out every day and walks the dog every day, you're going to have to curtail that for a short period of time, but once you get the device and everything is all healed up, you are free to do anything and everything you want to do.
Bruce Kassover: That’s fantastic. Now, you did raise a good point that that it really isn't for everybody. Like any other medicine, medical procedure, device, you know, not everybody is automatically a candidate. Not everybody's going to get benefit from it. I do know that it's been incredibly successful. There's like hundreds of thousands of people who've gotten it and who've gotten relief from it. So, you know, it sounds like there's a pretty good chance that this is something that really could be a benefit to you, but you do want to stress that, you know, you, it does make sense to go through that trial first to make sure that you're, you're one of those hundreds of thousands of people.
So you've you've gotten the implant. How quickly did you start to see it generate results for you? Almost
Carolyn Hampton: Immediately.
Bruce Kassover: Really?
Carolyn Hampton: Yes. It's, it's like night and day. Once that nerve is getting that stimulation, it, they, the doctor, as well as the, the rep from Medtronic Are in my recovery room and they turn it on and we find the setting and I go home.
I'm recovering from the surgery, which by the way, in my opinion, is a fairly easy surgery – it’s outpatient. Yeah. Outpatient. And you're groggy from the anesthesia and you're sore cause somebody cut your open, but you're not, you don't have to have someone come wait on you when like with some other surgeries that I have had.
So it was really, barely immediately once I got home, it's like, “Oh, I have to go to the bathroom. I haven't been to the bathroom in four hours, you know, and I've had stuff to drink and I haven't been to the bathroom.” And then you go to the bathroom and it's like, “Oh, I can walk to the bathroom. I don't have to run to the bathroom.” Totally night and day.
Bruce Kassover: What was it like waking up the first night that you didn't have to get up for, six or seven times?
Carolyn Hampton: Oh my goodness. That was scary. Because I didn't wake up and I wasn't wet when I woke up. So that was like, “Whoa.”
Bruce Kassover: Must have been very, very nice – yes, that's great.
Carolyn Hampton: Yes, that was, that was amazing.
Bruce Kassover: Excellent. Now, how long have you had the device implanted?
Carolyn Hampton: It'll be 10 years next month.
Bruce Kassover: Wow – 10 years. And it still continues to deliver relief, huh?
Carolyn Hampton: Yes, it is. Yes, it is. Now, in those 10 years, I have had to have the battery replaced, which I had the older model 10 years ago. So I had the battery replaced once. And the second time that the, started, the battery started to die, I now have the new upgraded version and I won't have to have the battery replaced for hopefully 15 years. So we're good.
Bruce Kassover: Wow, that's fantastic. Now, is it, can you tell when, when it was time for the battery to go? Is it like delivering… was it not working quite as well or?
Carolyn Hampton: Oh, yeah, it was your symptoms return.Yeah, it's like, “Wait a second. This isn't right.” Yeah, you dial it up, you dial it up because you think, “Okay, let me give some more, give some more power to that stimulator to hit that nerve.” And you know, that worked for a little while and then you got to do it again. It's like, nah, time to do it, to get the battery done.
Bruce Kassover: Yeah. So, and it's not just a double A or anything…
Carolyn Hampton: No, unfortunately, it does require to go back in and take it out and put a new put the new battery in. And so you back up, you know, another surgery.
Bruce Kassover: So you have one procedure that you say is an outpatient procedure that's not terribly, you know, difficult as far as these sorts of things go, and you have 15 years of relief. And you know that it's relief because you see when the batteries start to fail, it comes right back.
Carolyn Hampton: And I tell people this, I said, I have a choice. You know, they, do you, would you do it again? Okay, I have, I have a choice here. I can have a surgery, even the second surgery with the battery being replaced.
I can have that surgery, which surgery, surgery has risks involved. I will not tell anybody there isn't a risk involved. And even though I say for me, it was an easy surgery, so I can either do that or I can go back to going to the bathroom every hour for the rest of my life. Take your pick.
Bruce Kassover: It's not a, not a difficult decision.
Carolyn Hampton: There you go. There's one more thing I would like to add. As an example for your listeners of my life before and my life now, and I talked about the nighttime bathroom, but for example, if I were going to go out to a movie and dinner with friends, this is what would happen. I would go to bathroom before I left my house.
I go to the bathroom once I got into the movie theater, because I hopefully didn't want to go in the middle of the movie. Now, after the movie, before I leave the theater, I'm going to go again. Going to get to the restaurant, sit down, place our order. I'm going to go to the bathroom while the, once the order is placed.
Food comes, we eat, we chat. Before we leave, I'm going to go to the bathroom again. If we happen to stay there for a long time, then I might have to go to the bathroom prior to leaving, or probably during, during the middle of dinner, and then again before we leave. And then, when I get home, I'm going to go to the bathroom again.
So I've gone to the bathroom in that four or five hour stint five or six times. That's what I used to do. Now, I go to the bathroom before I leave my house. And I might go to the bathroom while we're in the restaurant, maybe before I leave the restaurant, depending upon what I've had to drink in the movie and in the restaurant.
And then when I get home, I'm probably home a couple hours before I go to the bathroom. So that's the big difference in my life then and now.
Steve Gregg: Carolyn, it is interesting to hear you say that. And particularly given the time of year in which we're recording this. So I don't know when exactly when it's going to come out, but we get so many comments coming to us around the holidays, because the holidays involve family travel, right? And multiple stops with friends, you know, to embrace all of the holiday seasons, which includes particularly food and a lot of beverages.
And we hear from a lot of women that you know, we're coming up on some of the busiest travel times of the year and many of them are petrified about flying, not because of the planes, but because where I sit. If I sit in the middle seat and I have to get up, and then I have to get to the bathroom, and then I have to get back. And they don't have that many bathrooms and somebody always goes in there for too long and by the way, they're traveling with family, which could be small kids or older, you know, their parents.
And so we really hear this frustration of, you know, how do I manage this awful condition during these times of festivity? So, I think your example is a really great one that, that there is a solution, there are solutions for you, and you need to go find somebody who can help you with this.
Carolyn Hampton: But you know, we’re very creative too, because I would take anybody's kid to the bathroom. They needed to go to the bathroom because that would be an excuse for me to go to the bathroom again. And then it wasn't known that I needed to go to the bathroom. I was just taking the kid to the bathroom, right? So I could have just gone and maybe half hour later, some other person says, Oh, dog, I gotta take my kid to the bathroom, and I’m, “Oh, no problem. I'll do that.”
Steve Gregg: That is a creative solution for sure.
Bruce Kassover: So I'm guessing that you would recommend people really consider this as an option if they find themselves in a similar situation.
Carolyn Hampton: I do. I highly recommend it. I do think everybody has to take into consideration all of what's going on with them because some people have other issues that they have to contend with, and they may not tolerate anesthesia well for surgery, so there's all kinds of other things that they may have to take into consideration. And those are things that they must address with their doctors to make sure that this is the right thing for them. But if all is good, then yes, go for it.
Bruce Kassover: Well, outstanding. That's really encouraging. I love hearing that it's delivered such an incredible amount of relief to you. And I'm hoping that others really take your words to heart and go out and find out if this is right for them too, because there's no reason why somebody who can be helped shouldn't be helped. So I really want to thank you for sharing your perspective and your experiences and opening up, because with any luck it's going to make a real difference for a lot of people's lives.
Carolyn Hampton: I certainly hope it does. And it's one of the reasons why I am an ambassador for the company is because I truly feel that this is such a taboo topic, this secret society. We don't talk about the bathroom issues. Like I mentioned earlier, once you’re potty trained, we throw that away and nobody wants to bring that up again.
But if you think about it, there's an entire aisle in the grocery store and in the drugstore for incontinence. So this really is an issue that's very prevalent amongst folks, but we just don't bring it out into the light. It's the shame and the embarrassment. But having this has given me such a freedom that I want to share that and let folks know that there is hope. There is definitely hope. out there. And if this doesn't work for you, then find something else that will.
Steve Gregg: Carolyn, it sounds like you found a really great set of doctors, both that talk to each other and talk to you. What advice do you have for women who oftentimes struggle trying to get to a primary care doctor who doesn't know anything about treatments, frankly, they don't know anything about incontinence, to be perfectly honest, and, and then it seemed like even after you went through the process and the procedure, you had an ongoing relationship with those great specialists. What advice do you have for our listeners about talking and finding the right kind of doctor?
Carolyn Hampton: You know, my doctor never heard of this. My primary care physician, she had never heard of this. So, and I found that to be very interesting. I'm like, “Well, don't you doctors talk to each other about stuff like this?” But it was news to her. And even though this product was not new, she did not know. So I think first of all, and I tell this to women, regardless of what that issue is, you have got to be your own best patient advocate.
You've got to advocate for yourself. I go into the doctor with a list of questions on a piece of paper, because if I don't, I'm going to forget something. And when I go with my mom or my uncle or my aunt, I kind of interview them before I go with them. And I'm there at the age now that it's like, “No, somebody has to go to the doctor with you because I, they need to hear everything, and you're not going to remember, and you need to hear everything and you're not going to remember what they said.”
So first and foremost, be your own best advocate or have an advocate with you. That's, that's number one. And number two, don't let the doctor blow you off. If you're not satisfied with the treatment that you're getting, the answer that you're getting, find another doctor. I really recommend that.
Steve Gregg: Yeah, I think that's really great advice. Writing down questions beforehand. We advocate that all the time and we keep hearing from a variety of doctors, which are you know, if you can't help me with my problem, I'll find a doctor who can. So I think that's really great advice.
Bruce Kassover: Now, you mentioned earlier about how you had to write a letter to your insurance company. I'm wondering, first of all, if you could tell us a little bit about whether or not your letter in particular was effective for you.
Carolyn Hampton: This was, this was 10 years ago, of course, but the scenario was this: They approved the trial evaluation. You know, you got to get the insurance company to approve it. So they did, It's a surgery. They approved it. But once the recommendation came back that, “Oh, this is going to work. Let's go forth with the surgery,” they denied it, saying that it wasn't necessary. I don't remember the exact term, but basically what they said was it wasn't necessary.
So I didn't understand how, if you didn't think it was necessary, number one, why did you approve the trial evaluation? That was a waste of time and money. You should have said, “No, you don't need that either.” And it wasn't a new product. It was something that had been on the market for years. So this wasn't some new product that they still were trying to see if it was going to work. There had already been studies. It was already working, so I didn't understand that either. So, yes, I wrote the letter and my doctors wrote a letter and it was effective. I, but I did have a 3-month gap in between my trial and the actual implant, which typically you would not have seen. Typically, I would have had that implant within another couple of weeks or maybe a month based on, you know, surgery schedules and all that.
But I ended up being 3 months, which is why I didn't get it till almost the end of the year in December when I started it in the fall.
Bruce Kassover: Well, I don’t know if that would have made me more frustrated or more infuriated, because as you were telling your story, that's exactly what I was thinking. I mean, why would they approve a trial if there's no possibility of them approving the actual therapy?
Carolyn Hampton: Right. Doesn’t make any sense.
Bruce Kassover: No, it doesn't. Wow. I'm glad you had, I'm glad that you did have that, and I think that that also speaks to your point earlier with Steve about how you need to advocate for yourself, that you have to take matters into your own hands sometimes. So I'm glad to hear that.
Carolyn Hampton: Don't suffer in silence for this secret, embarrassing issue that we are dealing with as an adult. No matter what your age is, I've talked to patients that are in their 20s and have the issue. I talked to a lot more older patients who do think, “Well, it's all, we're older now. And it's just the way it is.” Some of that is true, but a lot of it, there's a lot of relief to be had. Where you can get the control back in your life and have the freedom of being able to enjoy family, friends, outings that you were able to do before.
Bruce Kassover: That's really encouraging. And I'm really, really glad to hear you say that because, you know, a lot of what we talk about at The National Association for Continence is the fact that if you find the right therapy, it really can give you back your life.
You know, lately, what we've been saying is that, you know, you don't think of incontinence as a deadly disease the way that some other things are. But what we do say is that we may not save lives, but we do save life.
Carolyn Hampton: Absolutely.
Bruce Kassover: And that's really what this is all about. So I love hearing you say that and I really appreciate it. So thank you for joining us today.
Carolyn Hampton: You're most welcome. I'm glad I had the opportunity to share my story and I certainly hope if it helps even just one person, then that's good.
Bruce Kassover: 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 IntgerStim Systems, visit controlleaks.com.
Our music is Rainbows by Kevin MacLeod and can be found online at incompetech.com.