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BackTable / OBGYN / Podcast / Transcript #38
Podcast Transcript: Painful Bladder Syndrome
with Dr. Jocelyn Fitzgerald
In this episode, hosts Dr. Mark Hoffman and Dr. Amy Park invite Dr. Jocelyn Fitzgerald to discuss the relationships among chronic inflammatory pelvic diseases, focusing on painful bladder syndrome / interstitial cystitis (IC) and endometriosis. Dr. Fitzgerald is a urogynecologist at Magee Women’s Hospital in Pittsburgh, PA. You can read the full transcript below and listen to this episode here on BackTable.com.
Table of Contents
(1) Dr. Fitzgerald’s Journey in UROGYN
(2) Interstitial Cystitis Etiology
(3) The Importance of Clinical Counseling
(4) Treatment Protocols for Interstitial Cystitis
(5) Sex Differences & Hormonal Influences in Interstitial Cystitis
(6) Referred Pain & Central Sensitization in Interstitial Cystitis
(7) Interspecialty Debate on Endometriosis Best Practices
(8) The Interdisciplinary Approach to Long-Term Interstitial Cystitis Patient Care
(9) The Future of UROGYN: Recognition, Innovation & Social Media
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[Dr. Mark Hoffman]
Hello, everyone, and welcome to The BackTable OBGYN Podcast, your source for all things obstetrics and gynecology. You can find all previous episodes of our podcast on Spotify, Apple Podcasts, and on backtable.com. All right, and welcome back to another episode of BackTable OBGYN. I've got my partner here, Dr. Amy Park. Amy, how are you?
[Dr. Amy Park]
Great. How are you?
[Dr. Mark Hoffman]
Good. Clinic, OR, what'd you have today?
[Dr. Amy Park]
I had a mix of admin and meetings and things like that, so it was good.
[Dr. Mark Hoffman]
I feel like I go into my meeting days excited that it's something different, and by the end, I'm like, I got to go back to clinical stuff. Some meetings are better than others. We have another great guest, friend of ours, and social media star as well. We have Dr. Jocelyn Fitzgerald. Jocelyn, how are you?
[Dr. Jocelyn Fitzgerald]
I'm great. How are you?
[Dr. Mark Hoffman]
Good. Thanks for coming on the show.
[Dr. Jocelyn Fitzgerald]
Thank you for having me. I'm very excited.
(1) Dr. Fitzgerald’s Journey in UROGYN
[Dr. Mark Hoffman]
Jocelyn is a urogynecologist at Magee-Womens Hospital in Pittsburgh. She's an assistant professor in the Department of Obstetrics, Gynecology & Reproductive Sciences in the Division of Urogyn. We want to talk today about interstitial cystitis, painful bladder syndrome. It's a topic that a lot of us would love to know more about. I know I do. As we do in most episodes, we want our listeners to get to know who our guests are. Before we get into the meat of it all, though, tell us a little bit about yourself, your career, how you got to be doing what you're doing.
[Dr. Jocelyn Fitzgerald]
First of all, thank you both for having me. You're two of my favorite people and I love this podcast. I'm very excited to be here. I work at Magee-Womens Hospital where I was born in Pittsburgh, Pennsylvania. I guess that's where it all started. I'm the oldest of eight kids. My mom and dad spent a lot of time at Magee when I was a kid. I was in and out of there all the time. I think that probably is where my interest in women's health started, going in and out of that hospital so many times as a child to visit my mom postpartum. That stuck with me.
My parents are both very community-involved and politically active people. I remember talking about women's health just a lot around the dinner table. My mom is also the oldest in her family of seven girls. I have six aunts. It's just like women's health was always a topic of discussion, but it wasn't always very, not intelligent because everyone in my family is very intelligent, but there was a lot of missing information in what was being discussed. That was very interesting to me. I also grew up in a very, I would say progressive environment. Reproductive rights were also something that was talked about all the time and it made me very interested in OBGYN.
When I went to college, I went to Penn State and I was in the honors program where you have to write a thesis. I double majored in neurobiology and women's studies. Penn State is a big enough school that they actually had a bachelor of science in women's studies. I took lots of women's health classes. My thesis advisor was a woman named Phyllis Mansfield. She was a menopause scholar. She was like a population health researcher in menopause. She had dual appointments in the Department of Biobehavioral Health and also Women's Studies.
I wrote my thesis on the backlash of the women's health initiative working with her, which I think is probably pretty unusual in 2008, that a college kid would be interested in menopause. That intersection between my women's health classes that were taught with this feminist scholarship perspective and my neurobiology classes gave me a lot of perspective. I got very interested in pain and women's pain specifically, and women's pain. I knew even in college as I was writing this thesis that women's pain, women's discomfort was not really taken seriously.
I didn't have as much terminology for it then, but now people will call it medical gaslighting, women's symptoms not being believed. That was the crux of my college thesis and what I got really interested in. I knew from having great mentorship there that I was interested in OBGYN and I was also interested in basic science. It was like, how does one become a basic scientist and a feminist, I guess, at the same time? Then I went back to Pitt for med school and I was in the PSTP program, which is the physician scientist training program. It's one extra year of med school where you work in a basic science lab. It's to keep MDs engaged in basic science without having to do a full PhD. I worked in a lab and this is where I think I'll probably spend a lot of time talking about today, in a lab with a mentor, his name's Chet deGroat.
If you're ever reading any UROGYN textbook, the first couple of chapters where they talk about basically the autonomic control of the bladder, he pretty much discovered all of that. He was in his 80s when I was in his lab and I worked with him and actually a gastroenterologist on a basic science project using rats. We looked at cross-sensitization between visceral hollow pelvic organs and how that upregulates all this neurogenic inflammation, things like endometriosis, IC, and IBS, and how those three things work together.
Anyway, from there, I guess I'll just quickly wrap up and say that was where my interest in pain came from. Then they tried really hard to get me to go into urology, but I didn't, I was just not that interested in men's health. I was very interested in women's health. I chose to go into UROGYN from the GYN side and then went to Hopkins for residency and then Georgetown MedStar for fellowship where Dr. Park was my attending.
That was a really interesting place to train to, and I'll pick up on this again I'm sure at some point, but as Dr. Park knows, when I was there, the MIGS division and the urogyn division were under one umbrella. I was constantly in endometriosis cases, seeing chronic pelvic pain patients, all at the same time I was learning about pelvic floor anatomy and urogynecologic surgery, which is really where my clinical time is now still spent, at the edge of MIGS and urogyn and IC.
[Dr. Mark Hoffman]
You still call her Dr. Park?
[Dr. Amy Park]
No, I switched to Dr. Park when I came to Cleveland Clinic. I was Amy at the time.
We're pretty cazh in my old job, and here, it's definitely more formal, but I'm so proud of Jocelyn and all that she's done. I just want to point out a couple of things. First of all, congratulations on your Magee-Womens Research Award for being an advocate. I know you're super active. I also want to say that she downplays the role her family plays in Pittsburgh. Her dad is the ultimate Yinzer. He's the Allegheny County Executive, Rich Fitzgerald.
[Dr. Jocelyn Fitzgerald]
Oh, thank you. He's the Pittsburgh dad.
[Dr. Amy Park]
Yes, and she's definitely well-connected in Pittsburgh politics. Yes, it's a lot of kids.
[Dr. Jocelyn Fitzgerald]
Everyone knows us. I can't go anywhere.
[Dr. Amy Park]
I love the saying that Jocelyn's mom would always tell them, "I gave you life and I could take it away."
[Dr. Jocelyn Fitzgerald]
My parents ran a very tight ship with the eight of us, in a good way. My brothers and sisters, that's a whole other podcast, are so successful and so interesting. I learned so much from them.
(2) Interstitial Cystitis Etiology
[Dr. Amy Park]
I do want to just pick up on that, what you said about MIGS and urogyn. We are the yin and the yang, two opposite sides of the same coin of benign gynecology. We're better together. We're natural allies. There's no space between us. In my old job, we took, it was great, one in seven calls. Additionally, there's just a lot of overlap and it was just hand in glove. There's no static. Here at the clinic also, we have a very symbiotic relationship. I think it's super important.
I do think it's hilarious because I personally didn't do a lot of pelvic pain, but the fact that you were exposed to that in Vadim and Jim's-- Vadim Morozov and Jim Robinson's clinic is fascinating. I know you've carried that collaborative spirit forward in your clinic with Nicole Donnellan.
[Dr. Jocelyn Fitzgerald]
Yes, and I did a lot of IC chronic pelvic pain research at Hopkins with Tola Fashokun. I did a randomized control trial with her on IC and pelvic pain. You're right, that at MedStar, the urogyns didn't see a ton of it, but I always knew I wanted that to be a part of my practice. I just got such good training in endometriosis with the MIGS people at Hopkins and the MIGS people at Georgetown MedStar that it's just like, it's really, I think, given me this very unique perspective on how to approach interstitial cystitis, painful bladder syndrome, that plus my basic science background in that disease.
I really do think I am trying very hard to create a paradigm shift. I use social media a lot for how people think about IC, painful bladder syndrome. I really truly believe in my heart of hearts that, especially in young reproductive-aged women and probably a little bit postmenopausal women, that's a little bit of a discussion for another day. When you have that "recurrent UTI" patient with negative cultures, IC symptoms, all this other pelvic pain. They're usually in their 20s, usually have seen a bajillion doctors by the time they get to you. I'd say 85% of those patients have endometriosis. That's really like the root of their bladder pain is neurogenic inflammation that is sensitizing their bladder afferents. That's what all the basic science shows is often the pathophysiology of that. I go to the OR with Nicole Donnellan, with Sarah Allen, with Suketu Mansuria, and I do cystos on these people at the same time. I'm doing pelvic floor injections. I go to the OR with them and wait and see these people's pelvis. These are patients that came to see me first as a urogyn for urinary symptoms. In the end, what they have is endometriosis. There's just a lot of research, I think, still to be done.
[Dr. Amy Park]
It's interesting that you say about 85% because I actually didn't think that or know that because I'm always looking for an infectious etiology. I try and think of, obviously, urine culture is a little hanging fruit, but I also look at urethritis, like gonorrhea and chlamydia and HSV, and then ureaplasma and mycoplasma. I definitely checked the most ureaplasma and mycoplasma in my whole group in DC. The people that it helped, and I don't think there's good research on this, but it helps younger patients who have a relatively recent onset of symptoms and have dysuria. If you find it in the older patients who've had it for years, I don't think it really helps them as much.
[Dr. Mark Hoffman]
How do you test for that? Is that a specific test?
[Dr. Amy Park]
Yes, you have to send it. It's a special send out.
[Dr. Jocelyn Fitzgerald]
I was doing it just similar to you when I came to McGee. Then shortly after I started, Lenore Ackerman, who's great and is giving a talk on IC this year. She's urology, ephemeris, I believe is her training. Don't quote me on that, give us a talk on microbiome and mycoplasma ureaplasma. I can't quote exactly what it was, the data she presented to us, but basically convinced me to stop sending mycoplasma ureaplasma all the time because she made it seem like it was not that helpful of a practice. I'm curious to see what she says at her talk on IC this year. I was just looking at the program today. I don't send as much of that as I used to, but maybe I should.
[Dr. Amy Park]
Maybe if you weren't finding much of it, then I don't think it would be helpful. My practice changed once I came to Cleveland, but there's definitely a very specific subset of patients. The reason why I bring up the infectious etiology is that I do think there's absolutely endometriosis as an etiologic agent, but then I always wonder about the microbiome viral or bacterial activation, just like HPV and chronic inflammation or some sort of reflex sympathetic.
[Dr. Mark Hoffman]
We talked about that with Ian on the microbiome episode because he was talking about the urinary microbiome. I said, "What about the reproductive microbiome?" He was like, "What do you mean?" I was like, "It's all connected. Why wouldn't there be one? There's bacteria that goes up through the cervix and the uterus and the fallopian tubes, it's patent. We know that because people are made. Why wouldn't there be some?" He was just like, "Oh." Then I started reading about it after our show. I wasn't the first person to think about it, but there were some people looking at it now.
There's some very, very, very early data to suggest there may be an infectious etiology, which we'll talk about endo another day. To me, it just did not make sense. None of the theories made any sense. It's just retrograde menstruation. It doesn't make sense. That was the other thing, is between IC and endometriosis and IBS, I think they called him the three-headed monster when we were in fellowship because at Michigan we did tons of pain. They are doing really advanced stuff, way, way above my head. Most of what she does is way above my head.
A lot of this neurogenic stuff, really thinking about pain in ways that I don't think most of us don't really have any idea about. That's why it's exciting to have you on to teach us a little bit more about this.
[Dr. Jocelyn Fitzgerald]
There's a lot that I don't know, but I think, to Dr. Park's point, and I'm calling her Dr. Park because we're on a podcast and people are listening.
[Dr. Amy Park]
You can call me Amy. It's fine. It's casual.
[Dr. Mark Hoffman]
One of the things about this show though, is this is a physician facing show. We're all trying to talk in a way that if we were all sitting around chatting and so yes, I agree with you though. I hear what you're saying, but.
[Dr. Jocelyn Fitzgerald]
Yes. I don't want to untitle Dr. Park, she trained me.
What a great memory. Oh, my God. To Amy's point, painful bladder syndrome, there's so many different phenotypes and there's so many different, I think, probably like the two-hit hypothesis that we talk about with cancer probably also applies to pain conditions. It's probably not just like one UTI. It's probably not just a little bit of endo. It's probably a little bit of both or it's probably a little bit of autoimmune or it's probably a little bit of a trauma or probably a little bit of psych.
I think most patients have all of these things that come together and create this perfect storm of neurogenic inflammation, other inflammation, hormonal things that sends off this real spectrum disorder of urinary symptoms that are not just bread and butter, like frequency urgency. It's this really horrible visceral pain. I will admit that I think that I probably have a little bit of IC myself, which is another reason this is very interesting to me. Not terrible, but like I've always had a very sensitive bladder. I absolutely cannot drink diet drinks, coffee very sparingly. I think viral things have a lot to do with it.
I got some virus last winter and had truly what I thought was like an IC flare for months. It was awful. I have tried almost every med that I recommend to my patients and it really is a very different thing than being like, "Oh, I have to pee all the time." It's just a totally horrible feeling. I feel much better now. I have a lot of empathy for my patients with this condition because I've had some flares in my life that feel a lot like what I think IC probably is.
[Dr. Amy Park]
That's interesting. I do think that you're right about hormones, though, and there's a lot of pathways that will lead to overactive bladder. Or we have PALM-COEIN to talk about all the different pathways that cause heavy bleeding or painful bleeding. We don't have a lot of it's hard to try and treat yet the phenotype for OAB. It doesn't even make that much of a difference because by the time we get there, we treat it the same for a lot of normal uterine bleeding. We treat it the same too. Yes, if it's ovulatory is different from its fibroids or polyp or something. I think that the IC painful bladder story still has yet to be elucidated. I'm sure you saw a lot in Susie's clinic.
[Dr. Mark Hoffman]
Oh, yes, tons, right? That was one of the bigger challenges, I think it was defined by urologists and they don't see it.
[Dr. Jocelyn Fitzgerald]
I'm really on a crusade to have them put out some IC guidelines of their own.
[Dr. Mark Hoffman]
I've been in places where the Department of Urology sends a letter out to the entire hospital saying we are no longer seeing IC. I'm like, 'Wait a second. You can't do that. You can't just say we're not seeing anymore. You define the thing and you guys take care of bladders." The idea that they're, and I've talked to chairs working, billing, coding over the years like it's not profitable to be in clinic talking to patients about their bladders for a long time when they want you to be operating. It's absolutely how we value financially specific causes.
Again, it's a whole other episode. Yet, it's something that for many reasons, I think whether you're a urologist or whether you're a gynecologist, it's not something many people spend a lot of time and training on. That's why it's exciting for us to have you here. Just at a very basic level, how do we define painful bladder syndrome, IC? Are we just using both terms all the time? Is it one of the others? What's the official name?
[Dr. Amy Park]
I don't even know. I look this up all the time. This also on social media, people get very triggered by the way you describe it. I usually say, "IC/painful bladder syndrome," so people know I'm talking about both.
[Dr. Mark Hoffman]
When I emailed you every time, it was painful bladder syndrome/IC because I didn't know.
[Dr. Amy Park]
No, that's what most people say because no one knows what it is and no one knows how to define it. The AOA does give some formal criteria. I'm going to embarrass myself, but I believe it's bothersome urinary symptoms lasting more than six weeks without other identifiable cause.
(3) The Importance of Clinical Counseling
[Dr. Mark Hoffman]
It's like IBS, right? It's a diagnosis of exclusion. We've ruled out other stuff. I guess we'll call it IC.
[Dr. Jocelyn Fitzgerald]
Negative cultures, blood in your urine. There are so many other things that, I guess, you could rule out.
[Dr. Mark Hoffman]
Hunner's ulcers used to be a part of the diagnosis. Now, not. Is that correct?
[Dr. Jocelyn Fitzgerald]
They still are. Cystoscopy is not like you don't absolutely need to, that's not how it's diagnosed. If someone is not getting better and you suspect they might have a Hunner ulcer, which is a very distinct phenotype of IC. That's probably the type of IC that is best understood as a bladder-centric IC that you go into someone's bladder and they legitimately-- I tell my patients it's like, "Oh, look, it's like you have a canker sore in your bladder. This is what's causing your pain." We know that those respond to fulguration or Kenalog or steroid injections.
They tend to get better. 85% of them really do get better and they can stay that way for up to a year. Sometimes people need them to be repeated. When I find Hunner lesions, I'm excited. I'm like, "Oh, I can treat this. This is something I can do something about." That is part of the diagnosis if that's what you have. Most IC is treated first and foremost with a symptom, survey with listening to the patient and starting off with basic things like behavioral modifications and seeing if you have dietary triggers, screening them. Making sure you, of course, have ruled out UTIs, some other type of organic pathology, like a diverticulum or pelvic floor spasm, obviously screening them for endometriosis-like symptoms, history of sexual trauma, and then going from there.
The AOA does have an algorithm. It was updated in 2022, thank goodness, because prior to that, it hadn't been updated since 2015. They really had this very stepwise approach and IC really responds best to a real multimodal treatment, not just trying one thing at a time. Long story long, cystoscopy. It's not diagnosed with a potassium test anymore or with a cystoscopy because often the cystoscopies are very normal looking.
(4) Treatment Protocols for Interstitial Cystitis
[Dr. Mark Hoffman]
When we've made the diagnosis, we think we can't find anything else out. We're just going to call it IC. We didn't see Hunner's ulcers. We didn't see any obvious other source. We're going to call it IC. Then what? Now we have patients that are having pain with a full bladder. What are our options for treatment?
[Dr. Jocelyn Fitzgerald]
This is where I think that I start to treat people maybe a little bit different than the average because I really am, have such a heightened awareness that many of these patients have endometriosis that I think has been missed to the tune of the fact that I'm doing a randomized control trial right now at Pitt on randomizing people to usual IC care versus a bundled approach to IC care, almost like an infectious bundle. I'm doing an IC bundle for them and I can go through all the parts of the treatment algorithm that are in that bundle.
One of the exclusion criteria for the study is the patient meets, and this is not-- There isn't a distinctive checklist for endometriosis, but has symptoms of endometriosis and would presumably meet the criteria to warrant at least a discussion with MIGS and maybe being offered a diagnostic laparoscopy and endo excision. I cannot tell you how many patients my partners have sent to be talked to by the research coordinators to be enrolled in this study.
After talking to them more, you find out that they have GI symptoms, pain with sex, painful periods, or they had painful periods and they were put on OCPs when they were a teenager. Since then they've gotten a little better. They have pain in their back or down their legs, like other cyclic symptoms. I'm like, "You know what? Before we go just treating your IC, you probably deserve to have a MIGS consult. These are the patients that I find overwhelmingly, they have endo when you go in there, but if they aren't, don't fall into that bucket and we enroll them in the study.
I do use the AOA guidelines, so I use them all at one time. I put them on a whole slew of meds in addition to the behavioral modifications that I mentioned. For any physician who's listening who doesn't know this, anything that's delicious to drink is probably not good for your IC. Alcohol, coffee, tea, soda, diet soda, pop, where I come from, spicy things. I always joke that the worst thing you could probably ever drink would be a diet spicy margarita would be the worst drink you could possibly have if you have IC.
Let's see, what else? Acidic things are also terrible. If you've tried all that, then I put patients on, I leave a little bit of this up to them, but I'll put them on some neurogenic med like amitriptyline or gabapentin. A lot of them have been on OCPs for a long time and have a little bit of, I think, microbiome dysbiosis going on. I actually put a lot of even young patients on vaginal estrogen, which I think helps them. I put them on Pyridium, scheduled for Pyridium, which a lot of people think you can't take for more than three days, but that's not true.
You can actually take Pyridium for quite a long time. I check their creatinine to make sure it's normal, but Pyridium gets a bad rap and it's honestly the only urinary analgesic that we have. I put people on that. I put people on Hiprex because there's some pretty good data that methenamine actually is, not only prevents UTIs, which a lot of these patients get a lot of UTIs, but it can help with bladder inflammation and bladder healing. I put them on aloe vera tablets, like Desert Harvest. Let's see what else. I offer them bladder installations. I offer them pelvic floor injections. I always offer them pelvic floor PT, universally.
[Dr. Mark Hoffman]
When you say pelvic floor injections, where are you injecting? What are you injecting?
[Dr. Jocelyn Fitzgerald]
I'm usually injecting a combination of bupivacaine and Kenalog and I'll usually do it in the levators and the pudendal nerves. That's a standard injection, but a lot of people have obturator spasm or some of them have piriformis syndrome. It depends on what I find on their exam. I don't offer injections to everyone. We do bladder installations in our practice, like a Whitmore cocktail. For people who don't know what that is, it's basically also a combination of heparin, lidocaine, bicarbonate, did I say Kenalog, a steroid, and plus or minus gentamicin. We don't always put that in there.
There have been some studies that show that the triamcinolone or the Kenalog is not actually that helpful. Olivia Cardenas-Trowers did an RCT on that, so you could take or leave that. Then I sometimes will take them to the OR for an operative cysto to look for a Hunner lesion. Sometimes I will even look before, but I find that in a lot of these patients, they have a very inflamed trigone. Their trigone is often extremely red.
They have a lot of squamous metaplasia, which no one exactly really knows what to do with that, but I extrapolate sometimes some data from what we do know in post-menopausal patients with recurrent UTIs who have a lot of lymphocytic infiltrate that's been identified in some recent papers in their trigone. Sometimes if they have a lot of that. I'm taking a little bit of a shot in the dark, but I'll fulgurate that off. It's almost like it's a biofilm or an inflammatory sediment.
[Dr. Mark Hoffman]
Buzzing on top of the trigone?
[Dr. Jocelyn Fitzgerald]
Yes, right on the trigone. If they have this squamous metaplasia and all this erythema, something that's fulguratable, I will give that a go. I've had some success.
(5) Sex Differences & Hormonal Influences in Interstitial Cystitis
[Dr. Mark Hoffman]
Can I ask a dumb question?
[Dr. Jocelyn Fitzgerald]
Yes.
[Dr. Mark Hoffman]
Do guys get IC?
[Dr. Jocelyn Fitzgerald]
Men do get IC, but it's a nine to one ratio. Not nearly as many.
[Dr. Mark Hoffman]
Is it similar in its presentation? Is it just completely different?
[Dr. Jocelyn Fitzgerald]
That's a great question for a urologist.
[Dr. Mark Hoffman]
I guess you're probably not seeing much of it.
[Dr. Jocelyn Fitzgerald]
I don't.
[Dr. Mark Hoffman]
Just when you think about pathophysiology, right, we're talking about hormones.
[Dr. Jocelyn Fitzgerald]
Yes.
[Dr. Mark Hoffman]
It just seems like if it's that overwhelmingly found in a female population, there's got to be something going on there.
[Dr. Jocelyn Fitzgerald]
That's what makes me think that the majority of it is actually endometriosis. I know that chronic prostatitis, the crosstalk between the afferent nerves between the prostate and the bladder, obviously, are very tightly knit. Same thing with the female pelvis. That's the research that I did when I was a med student. We would literally, now I'm going to talk about the colon, but we would inflame the colon. We'd give basically these rats a chemically induced IBS or really IBD. These poor rats, they had terrible diarrhea.
Then we would take their bladders out six weeks later and they would have all of these molecular markers of IC. They basically worked as an IC model, but we never touched their bladders. We just horribly inflamed their colons.
Then they would get all of this mast cell recruitment and they'd get all these pain receptor upregulation and they would recruit all these A-delta and C-fiber, upregulatory things and their bladders would have all these other markers of IC. We'd even put them in these little wells and like to see how often they contracted and we'd measure how often these rats urinated. Anyway, they basically all got IC from having a viscous organ with inflammation nearby. A very similar thing happens in a rat model of endometriosis or a rat model of prostatitis. They end up with a lot of really inflamed urinary things.
[Dr. Mark Hoffman]
That's how I explain it to my patients too when I talk to them. I'm like, "Endometriosis, IC, IBS, these are three chronic pelvic inflammatory conditions of unknown etiology." We know that when you have IBS or IC and you treat their endometriosis a lot with birth control pills or an implant, oftentimes their IC and their IBS can get better. Is it just because there's less inflammation not pissing off the neighbors as much? Is there truly a hormonal component to it?
Again, but like we know it's related and it can't just simply be, again, with endometriosis and it's not just the lesions. It's not just those little nodules. It's so much more. That's where the surgical approach to endometriosis came from. Obviously, there's a role for surgery, but as a primary tool for managing endometriosis, it's everywhere. You can't complete excision. It's not a thing. It can't be, there's no way.
(6) Referred Pain & Central Sensitization in Interstitial Cystitis
[Dr. Amy Park]
I've heard of the somatic referred pain, but I've never heard of this visceral referred pain and this crosstalk. How does it work? Does it go to the ganglia?
[Dr. Mark Hoffman]
Dumb it down for the listeners like me.
[Dr. Amy Park]
I've heard Susie's talk about central sensitization. I know that they run together in terms of the IC, IBS, vulvodynia, all these disorders, but how does it not affect the rest of your body? Does it just go into your pelvic nerves and the ganglia there?
[Dr. Jocelyn Fitzgerald]
That's exactly what happens. This is how I knew I was not built to be a lab researcher when I was in med school. Again, my two mentors-- Pam Moalli was one of my great mentors. She's a very famous urogynecologist for anyone who's listening and currently my boss. I did research with a gastroenterologist and a urologist in order to study female pelvic pain.
We would inject these radio-fluorescent markers into the colon. It was blue. I remember it was a blue luminescent dye and it would get taken up by the afferent nerves in the colon and then we would inject yellow dye into the bladder and then we would-- This was so insane, this dissection we would do to get out the dorsal ganglia of the lumbosacral [chuckles] nerve roots of these rats. It was so small.
Then slice them up and then look at them and look and see where the dye tracker had gone. We would find that a really large number of these ganglion neuron roots had both blue and yellow dye in them. They synapsed literally on the same exact nerve root. Then they would look and see is now this message from the colon, this inflammation that's telling all the afferent nerves in the colon like, "We're on fire. Help us."
It would go back to the spinal cord and then it would, in these shared neurons, send out this inflammatory signal that would affect the neighboring organs that shared the same nerve supply, and then those nerve endings we would also do all these histologic slices of it, would recruit all these mast cells to the nerve endings specifically that had the crosstalk happening.
The nerves that are shared with the other angry organ summon all this-- It puts out all this TNF alpha and all these mast cells and just brings all this angry inflammation to its little endings and then it starts to upregulate all these other signaling pathways that makes your bladder very overactive and painful. It also kicks and makes the urothelium very leaky because the mast cells are releasing all these triptases and they're making all of the junctional proteins go to crap and then all of a sudden the bladder is a mess and in tatters and it's very susceptible to other irritants when it fills but also from its lamina propria side.
It just has all these mast cells in it now and they're going crazy and all of the afference that feel pain, like A-delta and C-fibers get really upregulated.
[Dr. Amy Park]
I find that fascinating because it's really not part of what is taught in medical schools. We all hear about referred pain and the diaphragmatic irritation causing shoulder pain and those kinds of things but we don't hear about the visceral aspect of the autonomic fibers, which I find fascinating.
[Dr. Jocelyn Fitzgerald]
So interesting. I can't even explain it well.
[Dr. Mark Hoffman]
It's not well understood? Is it that it's new? Is it that no one cares? All the above?
[Dr. Jocelyn Fitzgerald]
I think that it actually is understood fairly well. I did this research over a decade ago and worked with all these really brilliant people who were like, "Oh, yes, this is the thing." It's a pretty well-known mechanism of visceral hyperalgesia and crosstalk. There's a few different mechanisms for it, but it's a pretty well-established thing. I think it's just that no one knows how to reverse it.
Once the horse has left the barn, how do you downregulate these mast cells, how do you downregulate all these pain receptors that have suddenly come to the surface? How do you reverse central sensitization? I don't think we know how to do that because that is also so closely tied to the emotional stress that has been triggered in real people who experience these symptoms.
What starts out maybe as an infection or maybe an autoimmune condition or maybe another disease in another organ, suddenly you have these real-world symptoms, you have distress over it, which probably kicks up your cortisol or who knows what else. Then all of a sudden, your whole body is programmed to feel pain and it's like, how do you put that horse back in the barn? That's why they try drugs like Lyrica and all this other stuff, but it becomes a full-body disease. Endometriosis, when it's a painful disease, is not just like a gynecologist's disease. It is like a full-body thing. I think that's why we've just not been very successful at treating it.
(7) Interspecialty Debate on Endometriosis Best Practices
[Dr. Amy Park]
It's frustrating when I hear from our MIGS surgeons that some oncologists are teaching the residents endometriosis isn't a real disease. At McGee, I know when I trained, the oncologists definitely respected and hated endometriosis because there are hard cases. They're like ovarian cancer cases.
[Dr. Mark Hoffman]
Except Endo doesn't respect surgical planes. It's like a lot of those safe spaces are no longer safe spaces in surgery. The other big thing for me is talking about oncologists taking care of endo is like, it's not the surgery. That's not the only piece of it. It's the hours and hours in clinic before and the education and understanding and the medical management and pre and preparing for the post-op medical management.
The number of patients I see that have endo that the ovaries left behind and they weren't suppressed at all afterwards or there's no discussion of post-op management. It's like once the surgery done, I've ended my management, and with endometriosis, that's not how it's managed. It's like not following a cancer patient afterwards.
[Dr. Jocelyn Fitzgerald]
Yes. I'm like, "You have to go get PT. You need to have chronic pain management." This is one piece of it, but this is a lifelong disease. It is like cancer that doesn't kill you. You still need multidisciplinary care to manage it afterwards. That makes me crazy.
[Dr. Amy Park]
What do you say about people who are excision only? Because there are a lot of those people out there.
[Dr. Mark Hoffman]
Careful, how many comments on social media do you want to get?
Some people are passionate about it. I say that jokingly, but what are your thoughts on that?
[Dr. Jocelyn Fitzgerald]
Even though I was trained as a MIGS surgeon at MedStar, I don't currently excise. I don't want to be like, "Oh, it's so easy to do, just excise." You have to be a really talented surgeon with a lot of training to excise endometriosis because as you said, those pelvises are a hot mess. You could be in there for an hour, you could be in there for eight hours. I guess let me be clear about what you're asking.
I think that if somebody is going into a pelvis looking for endometriosis, they better have the surgical skills to completely excise it. I do think that complete excision is the surgical gold standard. I do believe that it is just a piece of the treatment of endometriosis and that we over-hype it in terms of how much pain relief specifically a patient can expect from complete excision.
[Dr. Mark Hoffman]
What do you mean by complete excision?
[Dr. Jocelyn Fitzgerald]
That's a great question too. I don't know if we've even defined that.
[Dr. Mark Hoffman]
You're not taking everything out unless you're taking the peritoneal services of every organ in the belly, then you're not completely excising anything.
[Dr. Jocelyn Fitzgerald]
I'm sure there's microscopic endo visible lesions, I guess.
[Dr. Mark Hoffman]
Again, serosal layers on the uterus. Again, you take out the ovarian fossa, you're taking out this bladder peritoneum, but there are areas that you're leaving behind. We don't even know what causes it, so why wouldn't it recur? Things again, guys like Frank Tube talked about how we're not even thinking about the new nerve growth as reperitonealization occurs.
All the damage that's been done to take those lesions out, there's no literature on how regrowth of the peritoneal lining and the nerve regrowth and how that impacts the future anyway. It is more than that. Yes, excision is important and if you have a focal lesion and nodules, those things for sure and they're hard cases, but I just don't think that's it. I think it's what you're saying.
[Dr. Jocelyn Fitzgerald]
No chance. That's all it. I had a long conversation the other day with a cancer oncologist, a basic scientist who was like, "I feel like if you put a team of cancer researchers on endometriosis, they could figure it out in six months." He wasn't saying that to be pompous. He was just like, "It's appalling that no one has taken the tools that we have in oncology and applied them to this disease yet. What is stopping people from doing that?" He's not wrong. He's like, "There's so many things, so many ways we know to study how cancer cells move and do things and find their targets that have never been done in this disease."
[Dr. Mark Hoffman]
It did take a century though for people to think of cancer more than just a surgical disease too though. That's the other thing. A lot's happening now, very little happened for the prior century with cancer care. I think there's a good opportunity for that for sure. We talked about MIGS a lot, but I want to talk about your multidisciplinary clinic because I do think that's something that is tough to do in some ways. We've done that a little bit where I am in different spaces. When they work, man, is it fun? But they can be tough. Tell me about what you're doing in Pittsburgh.
(8) The Interdisciplinary Approach to Long-Term Interstitial Cystitis Patient Care
[Dr. Jocelyn Fitzgerald]
We actually had this clinic today. The endometriosis center at Pitt was already established when I showed up being run by MIGS and they were seeing patients alongside pelvic floor PT at the same time plus or minus behavioral health, a psych piece. I am obviously very passionate about adding my urogyn expertise and bladder pain expertise and so I really wanted to be involved with the help of Nicole Donnellan, who you should probably have come on here because she's brilliant and awesome. I said, "Can I be a part of the endo center as a urogyn?"
She was super excited. She's a real mentor and sponsor to me and she said, "You can take it away. I'll support you however you want." We basically were like, "Where clinically are we seeing patients that we also have physical therapy that we can find, carve out a time where we can all be there together?" It's actually very cool. UPMC has a sports medicine center that also has OBGYN built-in. It's called the Lemieux Center, after Mario Lemieux. It's also the Penguins practice facility. It's a really [chuckles] interesting clinic that has an ice ring in the middle of it and PT right across the hall from OBGYN and then the ortho offices are downstairs. Anyway, twice a month, we split the clinic in half.
Dr. Donnellan's template is in the morning, my template is in the afternoon. In the morning, I have administrative time, but any patients that would benefit from me seeing them for a consultation for their bladder or for pelvic floor trigger point injections, I will go in and see that patient after she has seen them alongside pelvic floor physical therapy. They see the patient together and if the patient wants to get physical therapy that day without having to have multiple exams. We all have a discussion about the patient, they go across the hall to the physical therapy offices and they have physical therapy right then and there.
Sometimes I will even do pelvic floor trigger point injections, and then they'll go get PT immediately after their injection, which a really interesting paper came out last year showing that patients actually do have an improved response to PT if they have injections right beforehand.
[Dr. Mark Hoffman]
Before each visit?
[Dr. Jocelyn Fitzgerald]
Not each visit, but depending on the patient. If there's someone who just is not tolerating PT really well, I don't know, their pain is in a really specific area, we work with PT. PT often will see the patient first and then say, "I think this would be somebody that would respond really well to an injection before their visit," or, "If you could do injections first and then send them back to us instead of the other way around." I leave that to the PT's judgment. They're really good and they know when someone is not just going to cold turkey, be able to handle physical therapy day one.
[Dr. Mark Hoffman]
It's such an important part of it to be able to have PT, to have that relationship. I'm very lucky that our PTs are downstairs from where we are. I was part of bringing pelvic floor PT to UK because it was such a big deal at Michigan where I trained. People were using it, it wasn't like I brought it, but it was something that I was part of building it where it was because there was so much demand. They're right downstairs and the letters they write and we can communicate. Managing patients together is wonderful. It's amazing you've got them across the hall, though, and in the same visit.
[Dr. Jocelyn Fitzgerald]
Yes, same visit. It's awesome. Then in the middle of the day at lunch, we have a multidisciplinary meeting with behavioral health about patients that, in particular, need extra. It's almost like a tumor board where we are all part virtual, part in-person. We had it today and talked about some really challenging patients. That has been really great. There's still pieces that we're trying to add. We're trying to recruit a GI person. That's a whole other podcast, like how little training GI gets in gynecology and female pelvic medicine. We interviewed and are really trying to recruit someone who's interested in doing that from a GI perspective.
[Dr. Mark Hoffman]
GI, colorectal surgery, both?
[Dr. Jocelyn Fitzgerald]
Mostly GI. For really bad endo lesions maybe, but I really think on the medical side, you really need a good GI person who knows a lot about motility, understands how IBS and endometriosis interact, understand defecatory disorders and pelvic floor spasm, puborectalis spasm, dyssynergic defecation, that kind of thing. That's really helpful. They're not in the clinic, but we do have people from pain medicine, also some internal medicine people who are super close with PM&R. I have an emergency medicine doc who helps me make complex care plans for these patients, very similar to as if they were a sickle cell patient.
We have regular meetings where we talk about when they come to the ER with a flare, what are we giving them. Then our chronic pain specialist helps in those meetings as well, coming up with those plans. We have a lot of friends in the pot. We're still working on it but that's what I spend my time doing in that clinic, coordinating that care for these patients who have a lot of medical PTSD from just not being believed and going from doctor to doctor to doctor or you aren't talking to each other. My role is to talk to them, all for them. I write a lot of notes and messages and emails, but I think it helps.
[Dr. Mark Hoffman]
It's incredible. It's not an easy thing. Having people buy into what you're doing is, I think, my favorite part of this job, is getting people who are equally excited as you are trying to solve complicated problems. Being in a university seems to attract some of those. Some of us who like solving hard problems, doing hard puzzles, but finding other colleagues. I've got a colorectal surgery colleague who I do all my tough endo cases with and it's just my favorite days. In my fiber program, we build an IR doc, just like catching up. Imaging is a whole other thing. I don't know if you guys do much with that with radiology, but we've been very lucky too to do that.
Just having these partners solve these hard problems, but what can it do for patients to have that buy-in? I plea for docs out there with skills and ability to reach out and think about how you can contribute to women's health and these complex diseases that need more time, more energy, more effort outside of your own little wheelhouse. That's where I've had the most fun and had the most success, I think. Kudos to you and your group over there.
[Dr. Jocelyn Fitzgerald]
Oh, thank you. I really think those colorectal surgeons, all these specialists, I always tell them, I'm like, "This is an area, do you want to become famous in your field? Go back to your meetings with your colleagues and talk about how you manage this." There is nothing in the GI literature about how to manage IBS caused by endometriosis. That is not a thing in their IBS guidelines. It's probably like [chuckles] the majority of IBS in women is probably related to endo in some way or some huge piece of it and they don't even think about it. It doesn't even cross their mind.
When I tell them, their mind is blown. I'm like, "You could become really famous really fast in your field for basically writing guidelines that don't exist." The last thing I want to say is people who care, I don't want to undersell how important it has been to have administrators in our department who care deeply about women's health, people who have literally masters in healthcare administration. Most of our administrators are women, and they went into healthcare administration to help do women's health from that angle.
That is one of the most powerful things I've ever witnessed because we go into their office and say, "This is a population of patients who are suffering and they're falling between the cracks. We need you to help us set up pathways between psych, between the ER, between GI." They work on those things behind the scenes so that we can actually have resources and be profitable.
It's been shown in studies that you can generate a lot of new business for your healthcare system if you have these clinics set up. They have a lot of buy-in with us too and they phone in actually to our multidisciplinary meetings as administrators to see how they can support the clinic. That is the reason the clinic exists is because they are so devoted.
[Dr. Mark Hoffman]
It sounds like you've got a great team there. It sounds like you've got great support. I think it is tough when you don't have that. It is tough to understand all the different people it takes to put together. Because I know that Nicole and I were fellows at the same time. I've known her for a long time, and yes, she's absolutely incredible. I wonder what I was thinking, but leaving a place like Michigan to go to Kentucky and start something, it really does. It all starts with that one partner, that one nurse who's like, "All right, I'll do it with you." "You? Really? Okay, let's do it." Then people see how much fun you're having and see the cool things you're doing and then they want to join in.
It really is just be excited and be nice and find partners and give them a chance to do something, find people who are excited about the same thing as you are and those things can build. As much as I look at places like Pitt, I'm just like, "I don't even know where to begin." It does oftentimes just take that one person, that one partner who can help you work towards that. They had their thing, but you coming in brought a whole new angle to it with the urogyn perspective on what they were doing.
Each having that small program, each time you find one new person to bring in, elevates it to that next thing. It's fun to watch and it's inspiring for those of us who are still continuing to build where we are. All right, your clinic is trying to rethink IC management, Endo, and all that. We've talked a little bit about this, but what's the future? What are the exciting research discoveries on the horizon that you think this is where we're headed and this is where the answer lies?
(9) The Future of UROGYN: Recognition, Innovation & Social Media
[Dr. Jocelyn Fitzgerald]
I think a lot of what we talked about already, like the recognition of other inflammatory disorders, especially in women, and how they affect end organs like the bladder. I think that's getting a lot of recognition.
[Dr. Mark Hoffman]
Autoimmune?
[Dr. Jocelyn Fitzgerald]
Autoimmune.
[Dr. Mark Hoffman]
Infectious?
[Dr. Jocelyn Fitzgerald]
Infectious. I think that honestly, COVID research and long COVID, the things we're learning about the mechanisms of that, I think are going to be helpful for unraveling IC. How does an infectious insult lead to all this dysregulation? I don't know if you see patients, but I see a lot of patients with mast cell activation syndrome, like MCAS and POTS, that community is very, very vocal on social media.
That's part of the reason I like being on social media trying to figure out what's going on. In the patient community, COVID has unmasked a lot of POTS and MCAS in patients. These are patients who are routinely being dismissed in the ERs. They tend to also overlap with this IC endo population. I think we're going to learn a lot more about mast cells, in particular, and how from COVID and how that might relate to other biological processes. I think that is one thing that's interesting and happening.
[Dr. Amy Park]
COVID is a total inflammatory disease.
[Dr. Jocelyn Fitzgerald]
100%.
[Dr. Amy Park]
Like a multi-organ inflammatory disease.
[Dr. Jocelyn Fitzgerald]
Correct, and so is endometriosis.
[Dr. Amy Park]
It's interesting that you say that, does it unmask it or is it the etiology? I feel like who knows?
[Dr. Jocelyn Fitzgerald]
There's a lot, I think, we're going to learn about inflammation from COVID and long COVID syndromes that is going to help us with IC and with endo. Maybe that's not-- Certainly not a blessing, but if there's any silver lining, that might be it. It's spurned a lot of basic science that maybe could be applied. Then there are some other therapeutics that I think are pretty interesting. There's a lot of talk about PRP injections for IC that have shown some promise. I've read a few good papers that I think were done in China that showed that PRP was helpful.
These immune, again, powerful anti-inflammatory things. There's still a lot we don't know that might be very interesting. There's some interesting studies on cannabis. That's more for endo on the endo side, but that cannabis actually has been shown in rats to regress endo lesions and they've actually gotten smaller through various cannabinoid pathways. There are a lot of interesting things that I think if we could just get a little more funding, a little more interest to help anyone who's listening, any med students, PhD students that are looking for a basic science route, there's a lot to do.
[Dr. Mark Hoffman]
I appreciate you coming on. I appreciate your time. You're clearly very busy. You talked about your journey, all the folks you met along the way that have just built with each step from your birth in labor and delivery, where you work all the way through your mentors through undergrad and beyond to help build this career you've had for yourself, which is so impressive at such a early part of your career. That's the other thing. We're talking about the future of endo and IC and those things is where that's coming from. I feel like I'm looking at it right now. At least a piece of it, it ain't coming from me.
I'm glad people like you are working on it and advocating and recruiting others, not just here today, but in your everyday life with your social media and how active you are and really speaking out about these things. We need to shine a greater light on these things and turn up the volume so more people like you who are talented and hardworking and brilliant and focused on solving these complex problems, I think that's, you're doing all the things. I know your patients are grateful. I'm very grateful that you're doing such good work and that you made time for our little show.
[Dr. Jocelyn Fitzgerald]
Not a little show. It's a very popular show. I'm very honored that you had me. You're both awesome. Dr. Park is awesome. She's my inspiration for being on social media. I tell people all the time, it's not every day that you're a fellow and you have attendings that are like encouraging you to talk on social media. A lot of times it's the opposite. I give her all the credits for making me feel brave.
[Dr. Amy Park]
Actually, I just laughed because Jocelun inspired me. I was so skeptical. Then I just distinctly remember Jocelyn was my fellow and we're trying to crack into the top 10 SGS influencers. Jocelyn was like, "My fingers hurt." I was trying so hard.
[Dr. Mark Hoffman]
To get carpal tunnel syndrome.
[Dr. Jocelyn Fitzgerald]
With sore thumbs.
[Dr. Amy Park]
Yes, sore thumbs, this syndrome, they have it in Korea, I guess.
[Dr. Mark Hoffman]
The Nintendo thumb. We used to call it as kids.
[Dr. Amy Park]
I think about that all the time. Then Jocelyn had this viral tweet and then she all of a sudden got 25,000 followers.
[Dr. Mark Hoffman]
Were you mad? Were you furious that she did better than you, Amy, that she was like that?
[Dr. Amy Park]
No, I'm happy for her. I like it.
[Dr. Jocelyn Fitzgerald]
A rising tide lifts all ships or whatever, you know?
[Dr. Amy Park]
I always like her tweets and she likes mine and it's like totally-- Listen, this is not a contest about followers.
[Dr. Jocelyn Fitzgerald]
The more OBGYNs on social media, the better.
[Dr. Amy Park]
Yes. Also, I have more of a physician facing profile and Jocelyn has more of a patient facing, like public facing profile. In terms of contents, mine is open obviously. Now, it's all moved to TikTok.
[Dr. Mark Hoffman]
I can’t do TikTok. I'm barely still on Twitter right now with all the nonsense.
[Dr. Jocelyn Fitzgerald]
It's hobbling along, I know.
[Dr. Mark Hoffman]
I know, but it is how I met a lot of people and how I got to become friends with a lot of people in our field. I'm very grateful for the social media part. I'm not as active. My thumbs are not as toned as the two of you. You guys have great looking thumbs from all your tweeting.
[Dr. Jocelyn Fitzgerald]
We'll do a thumb war at SGS.
[Dr. Mark Hoffman]
I wouldn't dare challenge you. I know better, but it is work. That's something I think I've learned from a lot of you guys about social media and the value and the power of reaching. I think about being a celebrity or an athlete now or before, it was always this mysterious cloak. Now, everybody has direct access. You can just message somebody almost directly. It's mind blowing to think about that. It's physicians to have a reach that is beyond your clinic. That's something that I think is pretty revolutionary. A lot of people are looking for answers. When folks like you are out there doing it, I know it means a lot. Just like this show, it's the wide international reach that we have. It's only just beginning. I think in the spirit of trying to educate and trying to solve these hard problems, we appreciate all you're doing. We really appreciate you coming on the show.
[Dr. Amy Park]
Thank you, Jocelyn.
[Dr. Jocelyn Fitzgerald]
Again, thank you for having me. It was so fun. Thank you for giving up your evening to do this.
Podcast Contributors
Dr. Jocelyn Fitzgerald
Dr. Jocelyn Fitzgerald is a urogynecologist and pelvic reconstructive surgeon and an assistant professor at University of Pittsburgh Medical Center in Pennsylvania.
Dr. Amy Park
Dr. Amy Park is the Section Head of Female Pelvic Medicine & Reconstructive Surgery at the Cleveland Clinic, and a co-host of the BackTable OBGYN Podcast.
Dr. Mark Hoffman
Dr. Mark Hoffman is a minimally invasive gynecologic surgeon at the University of Kentucky.
Cite This Podcast
BackTable, LLC (Producer). (2023, November 9). Ep. 38 – Painful Bladder Syndrome [Audio podcast]. Retrieved from https://www.backtable.com
Disclaimer: The Materials available on BackTable.com are for informational and educational purposes only and are not a substitute for the professional judgment of a healthcare professional in diagnosing and treating patients. The opinions expressed by participants of the BackTable Podcast belong solely to the participants, and do not necessarily reflect the views of BackTable.
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