Interstitial Cystitis: Etiology, Diagnosis & Treatment

[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.
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[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.
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[Dr. Jocelyn Fitzgerald]
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.

[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.