IC You Pod Ep 22
Hosted By: Callie Krajcir
Featuring: Jill Osborne
(Callie) All right, everyone. Welcome back to another episode of IC You. I have the legendary Jill Osborne with me. The American Urological Association just updated their guidelines for diagnosing and treating Interstitial Cystitis and I figured let's have Jill come on and share her thoughts about it.
(Jill) It's always a thrill to see what the new things are gonna be. It's always a little scary. We as patients want to make sure that our physicians are using the latest information as they're working with us. So the AUA guidelines are literally the latest information and they are based on science. So this is a careful, thoughtful review of as much research as they could find. They look for the most reliable information, evidence based. The downside of it being evidence based is we might lose some nuance and we might lose some practical kind of doctor, patient relationship stuff that has to happen as patients seek care. So the guidelines have some wonderful new things, but it also has one huge flaw. The single most important thing that these guidelines do is they say that IC is a chronic pelvic pain syndrome. They specifically say it is not a bladder disease anymore. They're looking at this as a chronic pain syndrome and this is thrilling for us because we as patients certainly know the diversity in this patient population that everybody responds to bladder therapies. Now the AUA says no, it's really not a bladder disease, it's a chronic pain syndrome and we need to start looking at it as a chronic pain syndrome, because one treatment doesn't work for everybody. Number two is they now acknowledge subtypes. They validated Chris Payne's approach because they talk about three fundamental subtypes. Number one, bladder wall driven. So bladder wall driven includes Hunner’s lesions, estrogen atrophy, chemo. Number two is pelvic floor driven. So these are the patients who would benefit the most from pelvic floor physical therapies. Number three is chronic overlapping pain conditions. So these are the patients who have IC, IBS, we're looking at central nervous system dysfunction as being the connection between those diseases or those conditions. One of the things that they've always emphasized in these guidelines from the day they were first released in 2011, is they don't want patients pursuing treatments that are not working. They say if you've given it a reasonable period of time, three months, six months, and it's not working for you, it's time to stop, take a step back and revisit the diagnosis. If you were to read the guidelines, there is this whole background area, and it is in this background area that they talk about the subtypes. Unfortunately they don't bring the subtypes into their treatment discussion. I was like, this is very vague in the recommendations and if there is no step by step recommendation for doctors it could potentially be a train wreck in my mind.[00:07:00] They got rid of the six step treatment protocol. So the old guidelines said, start at step one do everything in step one, then go to step two do everything in step two, then go to step three, the steps were arranged with respect to the risk of adverse events. They didn't want you to do bladder surgery until you had done diet modification. So it was kind of an intuitive tool that helped patients understand the context of therapies and risk versus benefits of therapies. In the new guidelines, now they are saying they are relying on doctors to educate patients about the risk versus the benefits, and that treatment selection is really based upon patient education and what the patient wants to do. The fundamental flaw with that is you couldn't do that in an hour. You're lucky to get five to 10 minutes of FaceTime with your physician. They have no time to talk about risks and benefits, but they also don't even have the time to educate on diet and stress management and the importance of those things. The value of the guidelines is consistency. It basically is helping doctors and patients be consistent in their therapy so that if you start in Florida and you end up in California, you're gonna be treated the same. I think we're gonna lose some of that consistency in favor of doctor preferences simply because there is not enough time in an appointment for a doctor to do what the AUA wants them to do. The thing about the research community is that they love research. They love the nature of research. They wanna know specifics of how the bladder functions. The guidelines are grounded in research, in good research, bu they're not grounded in day to day, clinical time and care. I think the patient is gonna be more stuck with the whims of that physician, rather than getting a fair assessment of all of their options at any given time. Now they have to walk in with a really good set of knowledge and a really good set of questions so that they don't get pulled into a doctor's personal preferences. Now they've got self-help separate and then they start there first. They're basically saying muscle should be assessed at the very first appointment, and if there is any sign of pelvic floor hypertonicity, also known as tight muscles, that patient should be immediately referred to pelvic floor physical therapy, and that is the highest recommendation. Another thing that they say in the guidelines is if the physician suspects Hunner’s Lesions, especially if they're over the age of 50, they say recommend the cystoscopy. If we see lesions, let's treat them quickly. It is a sad reality that there are many patients out there who had hydrodistentions. The doctors found Hunner’s Lesions, but they never treated them. That is almost medical malpractice in my opinion. If they find lesions, they should be treated immediately at the time that they find the lesions and lesions are treated in two ways. In these guidelines, they're treated with either laser heat therapy, or they're treated with steroid injection. And that too is a very clear recommendation. The patient quality of life is massively better. We wanna make sure the patient is well hydrated. We wanna make sure that the patient isn't under massive levels of stress, because we certainly know that when you're stressed and you're [00:15:00] in fight or flight, your brain is gonna intensify that pain. So we always have to take a moment and look at our psychosocial aspects. They also recommend the use of over the counter supplements like Prelief, and that's important because so many patients simply cannot afford the other treatments that they're gonna talk about.
(Callie) I recently did this whole social media post about how Prelief is an amazing [00:16:00] tool for people who have gone through an elimination diet and know what their triggers are. I know so many people in the IC community who just have Prelief with every meal and they don't know what their triggers are. So I always find it's important to say that and to actually conduct an elimination diet and learn those triggers. And then once you know those triggers, that's when you use Prelief, it's not just a bandaid to get you through every single meal.
(Jill) It's understanding cause and effect, and that's something that we always have to reinforce to IC patients. The symptom is the effect. We have to understand the underlying cause. It all comes back to these different groups, so we can't make a hundred percent statements about anything. The theme of the guidelines has been a very clear minimization of trauma. We are acknowledging the different presentations of patients. In the end it's a good update except for the fundamental flaw that it's now relying on doctors to educate patients about risks. What the guidelines are saying is start the patients with oral medications. [00:24:00] So the first oral medication is amitriptyline, and they argue in research studies that it is effective at reducing pain or reducing discomfort in higher doses, but they also acknowledge that side effects are huge. I think 80% of patients who use amitriptyline suffer with really significant side effects like dry mouth, dry eyes, weight gain, in my case changes in the rhythm of my heart that lasted for years. I only took amitriptyline for three months. They also mentioned Elmiron and they have [00:25:00] that other guideline after it saying that the risks should be discussed. They do mention the FDA warning now about the use of Elmiron for causing retinal change, so they recommend that retinal exams be done in the first six months of the use of Elmiron. I think it's [00:30:00] for us as patient groups to try to explain the context a little bit more.
(Callie) The fact that they highlighted the value of referring out to other practitioners like registered dieticians or physical therapists or psychologists, I thought that was really awesome, but I think they said if it's a complex case you should refer out or something along the lines of that. And I was like, I feel like referring out for everyone is helpful. I don't feel like it should necessarily be a complex case.
(Jill) And we have to ask ourselves, what about the patient who can't afford physical therapy? What about the patient whose insurance won't cover their physical therapy, what are their options? Generally what I tell [00:34:00] patients is if you can go once, save up your money, go once, have that proper pelvic floor assessment, and so at least we know the muscles and then you can come back six months later or a year later. We want them to use that first appointment to understand their body more, get some good tips and strategies, and then bring that home and apply those for several months. The worst thing that a patient can do is just start doing kegels, that will only make it worse. Then we get to bladder installations and cystoscopy. They acknowledge in these guidelines, that particular hemorrhaging happens in normal patients who have hydrodistention, that it is in in fact, potentially a byproduct of just stretching the bladder and that there's no correlation between the presence of particular [00:36:00] hemorrhages and treatment response. They go over the basic bladder installations and they give the evidence on that. They mention Botox is an option. Maybe Botox may be administered if other treatments have not provided adequate improvement of symptoms. They're still kind of wanting patients to start with the least invasive therapies before they go to the more invasive therapies. Then they also talk fairly in depth about major surgery. The point that they make in major surgery is that patient selection is the predictor of how that patient is gonna do. If a patient has a very small bladder capacity as compared to a large capacity, if a patient is very reactive to food, if a patient's bladder symptoms are numbed by an anesthetic cocktail, then that tells us that their bladder wall is significantly compromised. That creates a case for potentially bladder removal. Whereas if that patient has a large bladder capacity, if that patient is not sensitive to food, if that patient does not have Hunner’s Lesions, if that patient has pelvic floor tension, if that patient has pain beyond the bladder, into their pelvis, then it doesn't make sense. So if that patient has chronic overlapping pain syndrome, they're really not a candidate for bladder removal because their problem isn't with their bladder. It's a central nervous system issue. We can remove the bladder, but you're still gonna have issues. And they talk about that.
(Callie) That's really important for people to know, because I see a lot of people in the support groups that are like, I just want my doctor to take it out. And it's like, okay, is this even an appropriate option for you?
(Jill) That's where online support groups are their most dangerous because people online are not medical authorities that can give you personal medical advice. We have to be a little bit more grounded in medical facts. This is about understanding your symptoms, understanding context, and understanding your doctor's recommendations. It's a lot more complex than people may think. It's rarely done in IC, extremely rarely done. Patients should not assume they're gonna end up needing to have their bladder removed. The only context is somebody with really severe bladder injury, we don't wanna scare people. I don't wanna scare people about that. They talk about how at that first appointment, that UTI should be ruled out. They're gonna look at urine culture results, but once they're negative, they walk away. The unnecessary use of antibiotics over long periods of time has created a tremendous antibiotic resistance problem, but that goes right in the face of those people who believe that their IC could be the result of chronic infection. We're gonna have another big international IC [00:47:00] meeting in June. AUA is kind of the gold standard, they're the largest urology association in the world, but they're also one of the most conservative. The European society for the study of bladder pain syndrome is a bit more dynamic, more responsive, but I don't even think they've made a statement about chronic infection. But if there's a theme here with these guidelines and a theme in the IC community, it's diversity, we're not all the [00:50:00] same. We have to understand and treat that unique patient. Not with preconceptions. We don't want the patient to fit the treatment. We want the treatment to fit the patient. Doctors were asked to evaluate patients on six characteristics. What does their bladder look like? Do they have tight muscles? Do they have [00:56:00] any other neurologically related conditions? What are their symptoms? Do they have anxiety catastrophizing symptoms, and is there any sign of infection? It's beyond the bladder. So we're not doing the bladder coding for [00:57:00] everybody now, we're moving way past that to evaluating the entire patient.Just to kind of sum this up for patients, understand that you are unique. Understand that your case is different from my case. It is you and your doctor's responsibility to try to study your body, to study your anatomy, to try to understand the underlying cause of what could be triggering this. You can't just focus on [00:58:00] treating those symptoms. We always wanna be taking a step back and trying to understand the underlying anatomy of those symptoms. It's not a one treatment fits all approach. It's about understanding your unique case and treating whatever we're finding. We can't just focus on pain care. We have to try to understand what is driving the pain and try to treat that pain. I'm not a doctor. We do not give medical advice, but my job is to educate and empower patients. I want you to know that you're not alone.