What happens when a 15-year-old is handed a diagnosis she's never heard of — and told to just deal with it? In this episode of "Read. Talk. Grow.," host Dr. Denise Millstine sits down with "New York Times" bestselling author Maya Van Wagenen and Mayo Clinic urologist Dr. Aqsa Khan to explore interstitial cystitis through the lens of Maya's award-winning YA novel, "Chronically Dolores." Maya opens up about how her own teenage diagnosis inspired the story of Dolores Mendoza — a girl navigating chronic bladder pain alongside the everyday chaos of adolescence, family stress, and fractured friendships. Dr. Khan brings the medical perspective, breaking down what IC actually is, why it's so often misunderstood, and the real treatments available beyond the restrictive diets and dismissive advice many patients receive. Together, the three unpack the emotional weight of living with an invisible chronic illness — the isolation, the humor as a survival tool, and the critical role that curiosity, support, and hope play in building a meaningful life when a condition isn't going away. It's a conversation that's equal parts funny, heartfelt, and eye-opening, and a powerful case for why stories like Dolores's belong on every bookshelf.
Chronically Dolores — Interstitial Cystitis, Invisible Illness & the Power of Storytelling
Dr. Denise Millstine is joined by NYT bestselling author Maya Van Wagenen and Mayo Clinic urologist Dr. Aqsa Khan for a conversation about interstitial cystitis — a chronic bladder condition that's widely misunderstood and often dismissed. Maya shares the personal experience behind her award-winning YA novel Chronically Dolores, while Dr. Khan breaks down the medical realities of IC, from diagnosis challenges to treatment options. Together, they explore what it means to live with an invisible illness, the emotional toll of feeling unseen, and why representation in fiction matters for patients of all ages.
This episode was made possible by the generous support of Ken Stevens.
We talked with:
Purchase Chronically Dolores:
Got feedback?
Dr. Denise Millstine
Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic is interstitial cystitis, and our book is “Chronically Dolores” by Maya Van Wagenen. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine. I'm so excited about my guests today.
Maya Van Wagenen lives in the Atlanta area with her fiancée and their pets. When she’s not writing, she enjoys quilting, knitting, costume design, reading, and binge-watching detective procedural dramas. At fifteen, Maya became a “New York Times” bestselling author after Penguin Dutton published her eighth-grade journal, “Popular.” The book went on to win the American Library Association’s YALSA award for excellence in nonfiction, making her the youngest author and first memoirist to receive this honor. Maya’s second book and first novel, “Chronically Dolores,”which won the American Library Association's Schneider Family Book Award for disability representation in young adult literature.
Maya, welcome to the show and congratulations.
Maya Van Wagenen
Thank you. I'm so excited to be here.
Dr. Denise Millstine
Dr. Aqsa Khan is an Assistant Professor of Urology and a consultant in Surgical Urology at Mayo Clinic Arizona, where she specializes in women’s urologic health. In addition to her clinical practice, Dr. Khan is deeply committed to medical education and physician well-being. She serves as the Urology Residency Associate Program Director and the Director of Student Wellbeing at the Mayo Clinic Alix School of Medicine. Her clinical and educational work focuses on benign lower urinary tract conditions in both men and women, such as urinary incontinence, prolapse, neurogenic bladder, and complex reconstruction.
Aqsa, welcome to the show.
Dr. Aqsa Khan
Thank you so much for having me.
Dr. Denise Millstine
“Chronically Dolores” is a YA (young adult) novel about Dolores Mendoza, who’s a teenager navigating chronic bladder discomfort that’s been diagnosed as interstitial cystitis. Dolores has been embarrassed by a catastrophic accident that she had – which has impacted her social life and her friendship with her best friend. Between dealing with family stress and financial strain and several pressures from her family, Dolores makes a quirky new friend with whom she hatches a plan to get her socially back on track.
So, Maya, I came to know about this book on one of my travels where I tend to visit indie bookshops. This time it was in Topeka, Kansas, where I went to Round Table Bookstore and was talking to the owner about “Read. Talk. Grow.,” and he quickly went to the shelf, pulled off “Chronically Dolores” and was like, you absolutely have to read this. I just read it with my book club, and we had such a great discussion about a condition I wasn't familiar with, and I was like, that is perfect for the podcast. I quickly read it. Thought immediately about Dr. Khan, whose work I am so impressed by, and so I wanted to talk to the two of you about this book and this condition. Can you tell us, Maya, your inspiration for “Chronically Dolores?”
Maya Van Wagenen
Yeah, well, Dolores’ diagnosis journey is very similar to my own. I was diagnosed only a couple of years later. I was 15, and it was not a condition I'd ever heard of. It's not a condition that anyone in my family was familiar with. And getting that news was very confusing and unsettling, and I didn't really know what it meant. There's not a lot of representation in young adult literature for things like chronic illnesses, as opposed to acute or life-threatening illnesses, which tend to have a lot of books written about them for teenagers and young adults. Whereas you're not going to necessarily find a whole lot of books about endometriosis or Crohn's or any of the other many, many conditions that teenagers are diagnosed with, that are, they're told, this is incurable. You'll have it for the rest of your life, but it's not going to kill you. So it's not really like, a big deal. You'll just have to figure out how to work with it.
And oftentimes that's like all of the support that you're given. And so to be a teenager when everything already feels very like embarrassing and everyone's looking at you, you know, that's the feeling to then have that added pressure of a condition that requires you to talk about your bladder is really a strange experience. And so I've lived my entire adult life with interstitial cystitis. When I was a teenager, I didn't know what my life was going to look like because I was 15. So I, I'm like, I know it's going to impact me down the line, but I'm not totally sure how because I haven't had a life yet. So I really wanted to write a book that dealt with some of those, like, really big questions while approaching the topic of chronic pain.
Dr. Denise Millstine
I love this, and I love how you mentioned that, because ironically, acne, for example, is so prevalent in teenagers and yet you never see it in romance novels. And like, they've always got these, you know, smokey eye and angelic skin. And yet the reality is most teenagers have at least some level of acne. So it's part of why we do what we do, because there are authors like you that include things that are more common and are less dramatic, and not necessarily the point of the story, but are a thread in the story which is important and is actually more representative of real life. So thank you for that. Aqsa, tell us your reaction to the book.
Dr. Aqsa Khan
Yeah, first I want to really applaud you for one, the story, but two, the section at the very end where you then brought up your experience and you know that you paired you that your life and how it tied into the book because now all of a sudden you really get that this wasn't just somebody writing about something that they heard of, like you're living from experience. And so I think the actual experiences throughout the book do make you wonder, oh my gosh, was this something that Maya went through? Oh my goodness, that sounds horrible and terrible. And I sort of have a face to the condition. I kept envisioning you through the book, actually, and making a new friend and the experience at the ice cream shop and all this stuff.
And so it's not easy to share anything about ourselves. And on something on such a personal level, and you sort of be the face to it, I think is a lot of applaud to you for that. But my reaction to the book was of many emotions. Comical in so many ways. And, you know, it's really funny. I there's both so many times I actually laughed out loud, I think you're so funny. But the undertone of it all, I was really sad because there's so many themes like you've touched on the (inaudible) of it, the hopelessness for the future, the avoidance of so many things, the lack of motivation to even do things because you sort of feel like, well, whatever, like is going to be my life. Like, I just don't want to have hope for other things.
There's a lack of hope and intermingled with not just like the medical condition, but within all the lack of support, in all the ways that a teenager needs her best friend, her parents, and even a new friend, the medical system, etc. but what I found, and I love that you did, is that you did bring hope into it. You found you talked about how the resilience of teenagers and how you found a new friend, you understood the meaning of a friend and a friendship and what that should represent. And even the priest for example, finding some way to have an outlet that can kind of give you just a part of what you need, you know, in a way that maybe traditionally you wouldn't have.
I just really found so many beautiful themes through it. And being someone who retreats, this is one of many conditions that people suffer with silently a lot of times. And, it's a very tough one. And I was sad. I was sad, and I would I don't even know if this is appropriate to ask, but I hope you've been able to get some help going forward now, I do wonder 15-year-old Maya too, or Dolores, you know, did she finally ever get some of the help that she needed, and I hope so.
Maya Van Wagenen
Yeah. I think one of the when I started writing this book and I wanted to approach writing a novel about a condition that the condition itself is not the arc of the story, in that she starts the book with interstitial cystitis, and there was an option to potentially, like, have her go into remission. Right. Some people do go into remission, but that had not been, you know, my experience. She starts the novel with interstitial cystitis, and she ends the novel with interstitial cystitis, and she's symptomatic the whole way through. So her character arc is not fixing or solving this condition. It's how she is approaching it. And it was very cathartic to be able to put some of my own experiences in there and to frame it within this lens of humor, which was a really important part of selling this story to my editor when she's like, you're going to write a story about a bladder illness. And I was like, yes, but I promise it's going to be funny.
And so that's how I got the go ahead and it was really important to me to have her arc be something that she could actually control, because the condition was not something within her power to fix. And so her journey is coming to terms with it and also what it means to be given a, a condition like a diagnosis that will impact what her future looks like and what her plans are and things like that, but also for her to come to the realization that this is still my life and I can still build a good and meaningful life with people who love me and who I love. And that was, you know, very affirming to be able to write as an adult looking back on the condition and is a, I think, a lifelong journey for most people with a chronic illness, is figuring out how to accept and work within the realm and the scope of it to build that, like really meaningful life.
Dr. Denise Millstine
I love that, and I love the reality of it, because we do often see these kinds of fairytale arcs where the characters are kind of sold on this, well, if you just fix your diet and start exercising, this chronic condition will just magically disappear. And it's not reality that all conditions can sort of just be brought to that type of end.
But before we get too far into the story, Aqsa, maybe you'll tell our listeners what interstitial cystitis or bladder pain syndromes, even what's the current terminology that's being used for those conditions.
Dr. Aqsa Khan
Thank you. Yeah, so the American Neurologic Association and the Society of Urodynamics and Female Urology defines it as a chronic pain condition. So within urologic symptoms there's so many things that people can feel if you will. It can be like I've got to run to the bathroom or, you know, but under the umbrella of pain, which would be pain at rest, like while you're restoring your bladder or pain with at the time of urination or following urination, it's coded to last, you know, about six weeks at least or longer or so, and it's not associated with other conditions that could explain the pain, most commonly something like urinary tract infections. But Maya has mentioned endometriosis. Could there be some GI pathology, something that we feel is really contributing to the pain of the bladder. And it's often associated with frequency, urgency, and we're having to wake up at nighttime to use the restroom.
So, this ends up being often times a diagnosis of exclusion, and rule all the other stuff out. And for years, I think people are they have pain and they'll see somebody and they'll say, well, here's a course of antibiotics. See you later. Call me if it doesn't go away. And maybe with some placebo effect or whatever is going on, people might have like ups and downs and, and then they'll get kind of punted around. I think there's a lot of lack of education, even within all the providers, really, if you will, that people just get kind of just punted along, punted along, punted along, might not get the appropriate treatments. But we do have very clear guidelines.
There has been therapies in the past that have actually been foo foo’d now. They were harmful. They're not helpful to patients. Things like potassium installations into the bladder to try to diagnose. These are not we don't do that anymore. We have a lot more science around it. And not to take too much time in the discussion of it, but, you know, interstitial cystitis, it is a diagnosis of exclusion. But I would say I think most people who treat this would say that there's really two main domains within this condition. And it is also now supposed to be called painful bladder syndrome or bladder pain. But it really most people do refer to as interstitial cystitis or IC.
But you have people who have like kind of perfect bladders, if you will, and in pain, and then you have people who are actually bad bladders, like the bladder itself isn't good. You'll hear words like Hunner’s ulcers or all sort of interstitial cystitis. You hear things like go, my relations or whatever it is. You'll have some people who get these chronic, fibrotic, small bladders that can actually damage their kidneys. So in a way, they actually are probably two different things, but they do fall under the umbrella of this condition we call interstitial cystitis. Maya, in your book, you had mentioned that someone had showed you pictures and it was red. Did they ever biopsy or do anything of that to kind of confirm the pathology there?
Maya Van Wagenen
I assume so. Gosh, it was so many years ago. But in my author's note, I do talk about seeing the pictures of what the inside of my bladder looked like and being told like, oh, these marks that you see are not supposed to be there. And there was this moment of like, oh, and that felt very validating. But that's not everyone's experience with IC, because there are plenty of people, like you said, who don't have any kind of visual cues that show up on a scope. But that was something that I found very validating, and I kept a picture of that, my bladder on my bookshelf, framed for a really long time because it was just this reminder of like, yes, this is this thing that I have, and it's there and it's real. And it's also one aspect of what's going on in my life and who I am. And so like kind of being able to hold space for it and to be appreciate that, like, yes, this is real. I'm not making this up. I am, you know, not being dramatic when I feel like it's that it's a heavy thing to deal with sometimes, but also being able to step back and see it in the broader scope of my life, which was what was so fun about being able to write Dolores’ story, because yes, she has interstitial cystitis, but she also has stuff going on with her family and in her friendships and all of that. And so the stress exacerbates symptoms, but it's always there in the background. But there's more to what's going on for her as well.
Dr. Denise Millstine
I just want to pause for one second, because I think you both have said some very critically important things about this condition that I want to highlight for our listeners who maybe haven't heard about this. And one is what you said, Aqsa, about the pain, which is not always what we think of in terms of pain. Like, for example, if you fall down and break your arm, like we all can picture what that pain is like. But bladder pain is often more broadly discomfort, irritation, urgency, pressure. So people who are experiencing those symptoms should understand that that falls under the umbrella of this syndrome.
And then I also want to highlight what you both just talked about in terms of the appearance of the bladder. So for our listeners who aren't aware, as a urologist, Dr. Khan literally takes a scope which allows her to go inside the bladder and see the lining of the bladder to directly visualize that. And where you said, sometimes that tissue appears just like a normal bladder, meaning a bladder that doesn't have any symptoms that are going on, versus another category where you visualize there is something that doesn't appear like the normal tissue would appear, but that both are part of this umbrella of chronic bladder pain syndrome, and both are very real.
Meaning, Maya, you explained that you had a picture of your bladder, which did show some changes and that was very validating. But my hope is that our readers might be very much like Dolores, who actually doesn't know what the inside of her bladder looks like. And it is still a very real syndrome, meaning you still have real symptoms and there still is options for treatment for you. So I just want to make sure we're clear about that.
Dr. Aqsa Khan
Yeah and then thank you for clarifying that. When I say pain, we even describe it as pain, pressure or discomfort, something that's noxious, something that it's just so distracting because it just doesn't feel right and we believe it to be related to the bladder. And so, you know, there is I think it is important to know that when we see lesions in the bladder and thank you, we put a small camera. It's oftentimes an in-office procedure that takes about 30 seconds to do, but we get an enormous amount of information about the health of the bladder. And when we see lesions, we can actually treat those. And I would say those are the patients. I think there's a lot of hope in that. I know I with a lot of certainty that I'm probably going to make you feel better, at least for some good period of time.
It's a little tougher when you have a perfect bladder, because now we're going to do a lot of trial and error therapies. However, the knowledge is really helpful.
A lot of times when we look into the bladder and if something doesn't look right, if I see a red area, what I tell my patients is redness in the bladder is going to fall under, you know, a couple categories. So it's going to be either cancer, which, you know, in a 15-year-old, the likelihood of that is almost zero. Or it's going to be inflammation. And the inflammation is either from an infection, so that's where the culture data and stuff is helpful or non-infectious. And so when we kind of again process of elimination, if you have, let's say a lot of times what you're going to do is try to do a little sampling of that just to get some information. And then based off of that information, you can feel comfortable to go ahead with that of other therapies related to the abnormal finding that you found.
And I think we'll probably delve into this a little bit later about your experience with your health care provider. But, you know, I do think that the photo that you were given, it validated you. But I don't know, things were then taken to treat the abnormal lesions, which there's when you can kind of say like, oh, okay, we found something. And just like with anything, like if someone had lab work and their hemoglobin, their sugar level was crazy, then the provider would say, look this isn't normal, okay, X, Y, Z, can be done. And I just feel like completely off. And we can go into that a little bit later because that's where we're headed.
Dr. Denise Millstine
Hey listeners, we hope you're enjoying this episode of “Read. Talk. Grow.” If you find our discussions helpful and insightful, please take a moment to subscribe to and rate “Read. Talk. Grow.” on your preferred podcast platform and don't forget to tell your friends to listen. Your support will help us reach more readers and those eager to learn about health through books. As always, feel free to drop us a line at readtalkgrow@mayo.edu with suggestions for books, topics or any comments. Thanks for listening.
Do you want to talk about that, Maya? Because I think Dr. Khan's struggle is like she wants to jump in the novel and be like, wait Dolores, I have treatments for you.
Maya Van Wagenen
I know and what is funny, so, you know, one of the things that I got to do with the book is Dolores will have these sort of like telenovela dramatic reenactments in her head of some of her memories. And so one of them is the time that she, you know, when she's diagnosed, when she's sitting in the office with her mom and there's a urologist on a rolling chair who never stands up and just rolls around the room and word for word, that was my experience when, yeah, when I was diagnosed. And, you know, I remember my mom, just like you said, cancer is one of those things that you think about in the back of your mind. And so my mom, when she heard what it was, she was just like, oh my gosh, this is such a relief. I thought it was something serious. And I remember the urologist being like, no, it's nothing serious, it's nothing life threatening.
And I remember being like, okay, sure. But, you know, being a teenager, I'm like, but it is threatening the kind of life that I would like to have. And so the justification given at the time, which I now know is not true, was that it was very, very, very unusual for a young woman to be diagnosed with interstitial cystitis and that it was something that you saw in middle aged people and older, exclusively. And so they weren't going to do any treatment. They were going to have me manage it through diet. I got a little pamphlet or whatever, and I took that home. And, you know, my parents naturally, like took their cues from the doctor and were like, okay, this is how you live now, and you know, you're going to have to figure out how to deal with that. And, you know, I think that's the experience of a lot of people who are diagnosed with a chronic illness is like, all right now it's your job to not inconvenience anyone around you because the thinking is like, oh, this is going to be forever. So it's not like we can just show up and support you and then you get over this and it's done. So this is on you kind of to handle forever.
Dr. Aqsa Khan
Until you're middle aged.
Maya Van Wagenen
Yes. So it was a really bizarre experience because I would, and this is something Dolores does in the book, I remember kind of vividly googling some of the statistics about the employment and relationships and marriage and children and disability and all of these things and quality of life. And as a little 15-year-old, I was like, oh, this is terrifying. But with about, you know, over a decade now of experience, those numbers are a lot. They aren't representative of actual like lived experiences of each individual person is so different. And the way it impacts them is so different. And even people with the same set of symptoms have different responses to it, and it impacts their lives in different ways based on their goals, based on the things that they want to accomplish. And it's even as an adult seeking sort of like continued treatment with IC, it's still terrible trying to find someone who will even discuss it. And I asked a Urogynecologist about it and he said that it was kind of a bummer of a treatment, of a condition to treat. And so that's why no one would see me.
And, you know, and this is in Atlanta. So like, I'm like in a big city, I have access to way more resources than so many other people do. But it was very interesting to be able to kind of hear that and reflect on the way that this condition is probably talked about by people who approach it from the medical perspective only as opposed to these kind of like lived experiences. And that was what was so fun about Dolores is she is a real fictional person who you can see how it impacts, and you get to sort of slip into what it feels like to be thinking about your bladder all the time, and what was like so affirming for me when I wrote this book is I had I sent it to someone who also had IC and she said, I want to give this book to everyone in my family and be like this, this is what the experience is like. And I felt just so grateful that, like, it could be a tool to talk about condition that really doesn't get talked about a lot. And so to hear that it's being picked up at book clubs or things like that, it just makes me so happy.
Dr. Aqsa Khan
I just love what you said about, how did you meet somebody else with IC? How did you make this friend? (inaudible)
Maya Van Wagenen
Well, online communities are great and there are lots of resources online. And I was you know, able to do a podcast even with the Interstitial Cystitis Association talking about Dolores and things like that. So there are lots of resources and information and you can make those connections online.
Dr. Aqsa Khan
Yeah. Because I think that, you know, for the aloneness of it and that feeling completely isolated and there's no one else that understands. I think I have thought the same exact thing about your book is that this is, it's such a beautiful window into the lived experience of somebody going through it. And when nobody else really understands it. I think that's such a nice depiction of that. So I love that suggestion to give this book to family members so they really can kind of start to get the compassion for it. So I thought that's a beautiful comment.
Dr. Denise Millstine
And this is the whole reason Read. Talk. Grow. exists.
Dr. Aqsa Khan
Well, you know, and to your point, I think if we go to the data, it does say that this tends to get diagnosed in people older than 40, in men and in women, women get diagnosed more. Men tend to have Hunner’s ulcers more often than women. But that doesn't mean that children can't have it. And I think that the what and I'm sorry for separating on it, but I did just read a girl, young girl, she's 17 and she had a condition that started, you know, started off feeling like IC, but she has something called eosinophilic cystitis and it wasn't unless she had biopsies and stuff that kind of prove that. But like, there are things that can inflame the bladder and it can make it. They all feel the same, inflammation, all the stuff that I just described it manifest the symptoms. And the bladder is a strange organ. We call it an unreliable witness. It's because the sensory component of the bladder in a regular, young person who didn't really struggle, they should be like, okay, I don't really have any awareness of my bladder. And then there's maybe a hint like, yes, okay, I could go to the bathroom, but you should be able to sort of, you know, just finish up whatever you're doing. Go on your own terms. This is after we potty train, you know, after age two or three. And then when you go to the bathroom, you pee, it shouldn't hurt. It just comes out and then you're done. And you shouldn't have any feeling that there's anything left. You get back to your day.
But once the plumbing goes wrong, for whatever reason, it manifests the symptoms. And the thing with the bladder that's difficult is that because unlike bowel movements, for example, we're kind of we think that people tend to go maybe once a day or once every two days or something, like we pee or should be peeing several times throughout the day. So there is if it's not going well or there's a problem with it, there's this constant reminder of it because it's there's so much frequency, not urinary frequency, but like, there's so much need to have to empty the waste product throughout the day. And so when people start to have conditions related to the bladder, it does take over major domains of their life. And it can impact all the things that you touched on and then even fringing into work.
You know, I've had people who they've had to have exceptions to have their work unit as close to a bathroom as possible because of the number times they have to. And this is, you know, I tried a lot of them, a lot of urinary condition. They have symptoms and conditions that paint, whether it's pain, whether it's urgency worse than continence, whatever it is like, people have to really modify their lives to be able to manage this and live too. So I think that I'm so glad that you've found some resources to get educated.
I think that the struggle here is that the internet is a very scary place, and I've had so many people who have come in and they've been devastated by things that they've read because it paints a really hopeless picture. Depends on what resources you happen to click into. And, you know, I'm really fascinated with all these algorithms and AI’s and all the stuff that gets fed to you. You know, you click on one thing and all of a sudden you're going to start getting a slew of one of some sort of information. We think we have control over it, but I don't know, there's things that we might not be able we get access to whether we want it to or not.
So I think it's so important that know what resources are vetted within the medical community and public to treat any and all of these conditions so that we you're getting proper education. So that and I think we might touch on it in a bit, but like you talk about the dietary restrictions, for example. Well, let's go to the science. Like what is the science say on it? What do we know? What studies have actually been done. So can we give some real counseling on that. So I think that's it. So on one hand it's a double-edged sword like you've been you I'm so glad to hear that you've been able to find a community that you can talk with. People really understand what you're going through. Truly, I think that the peer support is stronger than almost any other support we can ever get. People who are going through the same thing that you're going through, but then you've also found some good organizations that have very good information, and they care. The people that are part of that, they really care. Versus sometimes you have to go and get into some kind of a chat group or something like that, or and it's really a lot of just really hopeless commentary. I mean, I had people come in, they're just eating like rice and like plain chicken with no seasoning. And I mean, the most boring of food and living this really restricted life because they heard from X, Y, Z, or they read this blog post and they just they took it all as science. So I would say, I'm glad that you've gotten some better resources.
Dr. Denise Millstine
Well, and it sounds like Dolores was on pause with just this diet manipulation. And the one-time Mayo Clinic is mentioned in the novel is when her new friend Terpsichore. Did I say it right? Terpsichore researches interstitial cystitis because she's curious about her friend's condition and comes back and says, you know, the data on diet is pretty scant.
Maya Van Wagenen
Aha, and I remember signing that out and being just so surprised because I was like, you know, my whole high school identity people knew me. It's like the person who like ate really, really boring food. So bringing my lunch in high school was mortifying. But I was like, well, this is the thing that I do, and it helps me. And then figuring it out later that, oh, these are based on anecdotal experiences of people. That's how this diet was compiled, asking people what they felt like caused their flares. And then anything that was on there is on the list of, you know, maybe avoid or this might be a high risk.
So in adulthood, I found that like by far my worst trigger is stress. And the stress of trying to follow that intense of a diet. I also have celiac disease, so adding that pressure on top of it was just making everything so much worse. And so generally, like with the exception of like a couple foods that I know definitely aren't feel great, I pretty much don't follow any kind of IC diet, and that information was just held up as like, this is the thing. And so to be able to look up resources that have medical backing and, you know, you can see what's going on beyond all of us who have it, who are just kind of trying in the dark to see what works and sharing what they feel like might be beneficial, to be able to actually like, look at the evidence based research. And that's just been such a game changer as an adult. And it was fun to have Terpsichore actually bring that up. And she's, you know, very research-oriented person. And that…
Dr. Aqsa Khan
Whatever she's allowed to research.
Maya Van Wagenen
Yes, exactly. Anytime she gets access to it. Yeah. It was a really kind of fun way to have that as a piece of dialog. Yeah. So I definitely approach the condition differently than I did, which was much closer to Dolores, how she is trying to navigate that. And so to be able to sort of like drop hints that like, you know, this is probably not the forever solution was really fun as well as to be able to show through Dolores is family and community, the different ways that people might respond to a chronic illness diagnosis, from just being like, awkward and not asking questions and sort of ignoring it, to just wanting to act like everything's normal, everything's perfect. You know, this isn't a big deal. It's totally fine.
And then on the other hand, Dolores has an aunt who is basically just trying to faith heal her, which I've definitely had experiences with people who are like, yes, this is what's going to be helpful for you. You hear a lot of that from people. Sometimes, you know, whether it's a supplement or whatever. It's like, this is the thing that's going to fix it. And it comes from this place of deeply wanting to help, but being able to write about how Dolores feels about someone coming up to her and saying that, I hope, helpful to people on the outside who don't know how to approach a loved one with a chronic illness diagnosis, to be able to see from Dolores perspective, what are the things that people do that are really helpful. And what are the things that people do or say that are really unhelpful. And you get to add a lot of humor in that as an author.
But there are also, I think, some really lovely, heartfelt moments. And one of them is when Dolores is older brother asks her a question and it's like, it's like, oh, are you in pain? And she realizes that, like, he's never really asked her question about that. And it opens up this sort of dialog where she gets to actually talk about how she feels because we're in her head. Right? She's our narrator. So we understand how she feels. But you get to see that there's a lack of understanding with her family members. And so for her to have the space to kind of talk about it with her older brother was a moment that I felt like was really important to put in there, to show, yeah, it's okay to ask this question and that that can actually be, you know, coming in from a place that's very curious and open is probably one of the most helpful things you can do.
Dr. Aqsa Khan
Yeah, absolutely. I mean, I think you touched on so many great things with (unclear). I think, just kind of going back to the experience, I think we as healthcare providers often forget that sometimes we can say one thing. It takes us two minutes in the visit and it's taken as not the word of God. But I mean, patients take that for everything. And, you know, for example, just like, let's just treat this with dietary modification. Good luck. See it until you're middle age. And it's it. There was no, question of even questioning that. Right. Like we, we you trust that you went to someone who's an expert in the condition and that they are giving you with the best of intentions, and I'm sure there's good intentions, but maybe I don't know. I don't know what's happening there, but they we have to remember that as providers, what we say is taken extremely seriously. So we hope that we're keeping ourselves educated and we're abreast of all the stuff. So when we give information and recommendations, it's coming from a place that is really founded and the best evidence that we have, etc., etc..
And then I think with regards to you had also touched on, someone had mentioned this IC or painful bladder syndrome is a bummer of a condition to treat, and I want to do touch on that. And I think with this goes to probably any chronic condition. You know, I do benign diseases versus my colleagues who are let's say they’re the urologic oncologist, and this is not black and white, but, you know, if you have the renal mass, how can you cut it out? And yes, there's no variants of it. Okay. Like, great. You and your four hours you're done is cut out like move on versus something that's going to and this happens with like I mentioned overactive bladder incontinence there. They're all different things. But there's all these long, long, long term things that go on for a long time. So in surgical fields, for example, I think people get uncomfortable with that. This isn't like treating somebody's diabetes. And you're going to be my patient for forever. We're not so used to that, if you will. I'm not saying it's not a bummer, but I think another struggle with that, though, and that one, research in this has been lagging behind a lot of our other conditions for a really long time, really kind of punted to the size. I've mentioned some of the stuff that had been done in the past. That's like, now we realized that was like so detrimental. Two, I think when it comes to pain, that's tough because where we need a lot of time to have those discussions and understand and of form that connection with patients and with the landscape of medicine as it is and this constant need to go, go, go go go go go. Health care providers don't have the time that they need to have with patients, so we sort of hope that the other support is there because that's really necessary.
You mentioned stress exacerbates your symptoms and you know, when you look at I see research I see is correlated with a lot of kind of other unknown, unknown, causality conditions, things like fibromyalgia, things like irritable bowel syndrome. There's a lot of people who kind of components of all of these things together. And what's the underlying thing, what's happening there. But they all need a lot of the kind of resource intensive. A lot of people need physical therapy, pelvic floor, physical therapy. So you gotta find a good therapist that understands that work. You have access to them. You social support you need maybe actually therapy. Some people actually should be going to a therapist. We should be, yes. You might have sometimes where things are bad with relation to diet, drink, etcetera. But then, you know, there's ups and downs that ebbs and flows. But how do you have a family or a partner or somebody who will sort of understand that and modify their life around it? Dolores is home environment with the one single bathroom that all the family shares. I love the bathroom stories, but, I mean, you can see how important the home environment. And so all of those pieces of the puzzle sort of need to fit in there, to have a holistic care of all of these conditions. And the health care team is kind of a big chunk of that puzzle, if you will. But I think that the bummer part of the condition is often that that puzzle piece, which is already kind of has the strains of all the time and all the people breathing down our necks to keep going, going, going, etc. If we don't have all the other puzzle pieces, we're sort of all also left dangling in the wind.
And yet at the end of the day, you have a patient who's not getting what they need and they come back with pain. And it's. And the other thing about pain is that if you're not someone who's going through pain, pressure or discomfort, whatever it is, you're not going to understand it. You could say like, oh, I got a paper cut, but this isn't the same thing. It's a totally different feeling. And like I mentioned, it's not like it's you put a Band-Aid on it and next week it's going to be gone. It's there all the time. And so family members or loved ones or whoever or partners, you know, it's different than cancer, where you can have that everlasting sympathy because somebody has this really tragic diagnosis. When someone has pain, you can sort of it. Yeah. That I imagine that feels bad. And then at some point they're probably like, well, I don't know what to tell you. Like how what can I do for you? Like, here's a med like go do something about it because I just can't understand it anymore. And I'm just using pain as an example. I think to your point, it goes with lots of chronic conditions, just generally whether it's diarrhea for some or whatever it is.
But this is where I think the support is so critical and the talking about it and, and letting family members or whoever's in your circle really understand, this is why I think your book is a great gift to give to people who are have family members with IC, just to get a sense like, hey, this is what life is like. I can't wear seatbelts because it presses on my bladder. I can't sleep at night because I'm awoken with discomfort and pain, so I'm not rested. I mean, so just start starting the conversation to say, this is how my life is impacted. I'm modifying. I'm trying to be the person that so you don't have to deal with me complaining, etc. but like, this is what I deal with and this is my reality. And I think that that just hopefully makes it takes that stress of the lack of support down. You know.
Dr. Denise Millstine
I think this has been such an amazing conversation about a condition that maybe many of our listeners won't have heard of before. If you each had one small piece of advice for somebody listening who's thinking, oh, I wonder if I might have IC or somebody I care about might have IC, what would that piece of advice be? Maya, do you want to go first?
Maya Van Wagenen
Yeah, absolutely. I think probably, you know, the it is better to know. And it is better to even if it sounds scary. And even if you've sort of told yourself, you know, it's probably not a big deal, like, I'm sure it's fine. Everyone has to pee sometimes. I think that it is. You know, it might seem scarier to have a name behind the symptoms. It really is better to know and find out and to be able to talk through it with doctors and see the resources and the research and find yourself within that and that that is, even while it is potentially very scary to go face what seems like a forever diagnosis, right? You're already living the day to day of it like, and that's the hardest part anyway. So like you're already doing that. So just go ahead and have that conversation with someone and go see the urologist. And yeah, it's very much worth finding it out.
Dr. Aqsa Khan
But I completely agree. I mean, I think that there are resources out there. There are very vetted treatments that we can be we can go to very extreme treatments if we needed to in order to keep people safe and to try our best to give them quality of life. I think education is everything. I think there's now really good resources. I'm going to put a plug out there for our Urology Care Foundation. They have a really wonderful book that can be accessed online that it's like 20 pages, but it speaks in a language is very understandable to just anybody going through diagnosis, different testing. What are all the therapies that are available, whether it's medications, whether it's office procedures, whether it's in the O.R. procedures. There is a whole smorgasbord of treatments, if you will, that are out there. You don't have to just suffer. That's not a life that anybody would wish for anybody to have to do. If you're not finding that the needle is moving for you. I mean, any urology person can probably do the evaluation to rule out all the bad stuff, but if they're not comfortable, then going on to do other additional treatments as recommended again by your guidelines. And our organizations, then ask that personally to get you on with somebody that is and say, look, you know, you're fantastic, thank you so much for making sure I don't have a massive tumor on my bladder or whatever it is. But who do you recommend? Or where can I find somebody that is more versed in treating these and get to that care sooner rather than later. Because like I said, there are things that can be done out there.
Dr. Denise Millstine
Fantastic. This has been such an enlightening conversation. I want to thank you both for talking about interstitial cystitis, for talking about chronic bladder pain syndrome through the novel “Chronically Dolores” by Maya Van Wagenen. Thank you both.
Dr. Aqsa Khan
Thank you so much.
Maya Van Wagenen
Thank you.
Dr. Denise Millstine
“Read. Talk. Grow.” is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
Visit our show notes to see the books discussed today and for links to other health education materials. Follow us on social media like Instagram and Facebook or reach out directly to our email readtalkgrow@mayo.edu with suggestions for books or topic ideas. We'd love to hear from you.
This podcast is for informational purposes only and is not designed to replace a physician's medical assessment and judgment. Information presented should not be relied on as medical advice. Please contact a health care professional for medical assistance if needed for questions pertaining to your own health.
Keep reading everyone!