Navigating a New IC Diagnosis
IC You Podcast Episode 21
Hosted By: Callie Krajcir
Featuring: Angie Kent
(Callie) Welcome back to IC You. I have Angie Kent with me who, up until five minutes ago I didn't know, was on the bachelorette in Australia. I thought you could start off with taking me through your health journey and how you got diagnosed.
(Angie) So I always had issues with my period. They would come, they would go and I always had really bad disordered eating, I'd messed up my cycle due to my eating disorder. It started from as soon as I got my period, I was about 12, and then I didn't really start to look into it fully until I was 25 when my adult acne came back. So I saw my doctor and she was like, let's put you on the pill for this and it'll help with your period. And it kind of did help, but I was still having really bad periods. And then she was like, you know what? I think you might have endometriosis. And she was like, let's get you into surgery anyway, because your symptoms are so bad. I had my first laparoscopy and yes, I did have endometriosis and that's all that I knew that I had. My first laparoscopy was so bad. I didn't know my surgeon, I just felt like I was butchered. So it left me with a lot of fear and uncertainty and no follow up on how to look after myself post-surgery or how to live with endometriosis. It wasn't until 2020 that I got a really good surgeon and started seeing a naturopath. Thats when I had my second surgery and then found out how severe everything was, but it wasn't until last year I found out I had polycystic ovaries and then this year I found out I had Interstitial Cystitis after my third laparoscopy. So it was quite a journey for me to find out that I had all of these things. I also have fibroids and adenomyosis as well. You go through a stage where you feel like a bit of a victim, especially when there's not much support and help around you mentally and emotionally for these types of conditions. I'm not IC, I'm not endo, I'm not adeno, I just experienced them. And that itself has provided me so much more relief to want to heal my own body.
(Callie) I love that. I feel like we all go through a grieving period when we get diagnosed with probably any illness. But with IC, I feel like it's a whole other category in itself because most of us have never heard of it before in our lives. We've heard of endometriosis. We've heard of PCOS. It's like you have this illness you've never heard of, and most doctors tell you, now you have to stop eating and drinking everything that you love. Everything just changes in one doctor's visit.Is that how you felt?
(Angie) Yeah. I was told that I had IC and then it was kind of like, here is an app that shows you the food you can and can't eat and off you go. I guess it got announced that I had IC or something because next thing I knew I had a bunch of people reach out and that's when I learned more about it.
(Callie) Were surprised that that happened, I was like, oh my gosh, she didn't even know that they were breaking this story.
(Angie) No, no idea. Cuz I had you and I had a few different people from across the globe say, I've just seen you been diagnosed with IC. And I was like, what? How did you know that? Everybody started reaching out and I realized there's like a whole community of people that are suffering with this, but haven't really been held and supported or educated on it.
(Callie) Not at all, and I think what that comes down to is a lot of people feel uncomfortable talking about it. There's a bit of a taboo on the topic and I think that in order for us to get more awareness and more research and support, people need to start talking about it, even though it is uncomfortable.
(Angie) A lot of the time we're just told we have UTIs though. I was always told that I peed so much because I was an anxious person and that every time I had sex, I got a UTI. So they just put me on antibiotics and all the pain I thought I had was endo. I just feel like I have learned everything relatively the hard way and I talk about it because I don't want people to have to go through what I went through and if they can learn a little bit through me or get diagnosed a little bit earlier than what I did, then that would be worth it for me. I would love to be able to help others and point them in the right direction.
(Callie) Absolutely. Based on what you told me in our conversation before, the level of care in Australia for IC just isn't up to par yet. What did the diagnosis process look like for you?
(Angie) My gyno ended up saying that he reckons that I've had this forever and I just didn't get diagnosed with it. We removed two polycystic ovaries, endo was looking good i kept mine at bay with natural remedies and diet. Then he got rid of my fibroids and said, by the way you have Interstitial Cystitis. He said it was one of the worst he's ever seen. I'd go in and see my gyno at the hospital for installations, it was just so traumatizing and so triggering. And I was then getting trauma flares and anxiety flares. With having all these new diagnoses, it can be so overwhelming to know where to start and what to look into. Luckily I work with a really great women's health specialist who works in natural medicine also. So I do acupuncture every week and he also has put me on these Chinese herbs that are great for inflammation. I notice that my flare ups happen the most when I'm stressed. It's exhausting because when you're hurting down there, you just feel so down. You feel really tired and you don't really wanna go out because you're sore. You think nobody gets me, and then you get into this spiral effect and then that just makes it worse. So I'm learning to pick myself back up and be like, you can heal your body with your thoughts and your diet. Iit wasn't until my pelvic floor physio was like you going to feel safe within your new diagnosis. Let's work on your pelvic floor. Let's work on your anxiety.
(Callie) I love that approach. I think there is a huge mindset piece to this, and sometimes we underestimate the power of our mind in causing flares and rejecting certain treatments. It's like your mind is just trying to protect you from this pain that it's perceiving.
(Angie) Yes. That's so true, isn't it? And you can choose to be a victim of that pain, which you have every right to do. So it can be so overwhelming and so debilitating, but you do have the choice to be a victim, or you do have the choice to be like, look, I'm experiencing this, this will never go away completely, but you can monitor it and live a relatively still pain free life. Because no two bodies experience anything the same and I would hate to scare anybody away from anything. I try to say to people with IC, I don't know enough yet, but whenever I learn something, I will post about it.
(Callie) How many of your followers have reached out that they have IC or they think they have IC?
(Angie) So many, hundreds. The amount of women that just reached out to me being like, how did you go with this or who do you talk to? It was hundreds and hundreds of them. It's so overwhelming because I wanna hold space for all these people, but at the same time, every day I have to work on myself, getting up and being positive and praying that I don't have a flare up. So what are the main symptoms that women or people with vaginas experience to look out for IC.
(Callie) Right. I just want to point out that men also do get IC. Our current statistics in the US is 4 to 8 million women have IC and 1 to 3 million men. And they think that there's a lot of misdiagnosed. Common symptoms would include frequency, urgency,, pressure/pain in the pelvic area, burning before, during or after urination, painful sex. It presents differently in everyone. So for example, I only have one symptom which is burning with urination. Other people have a mix of frequency and pain, or a lot of people experience this feeling of pressure or pain that radiates down their legs. There isn't one classic case of IC. It's so interesting how variable we all are. There was a doctor in the United States named Christopher Payne who came out with a theory on different subtypes for IC. So he proposed five different subtypes that go into different root causes, so for example, one of them would be central sensitization. For someone in this subtype, they would commonly experience other nervous system issues like anxiety or IBS or conditions that are made worse by stress or anything that has to do with the nervous system. A lot of people say they have a mix of maybe one or two. There is some more research emerging or at least being done on these subtypes because that's one way to explain how we all have one condition, but it presents in different ways and we all respond differently to different treatments.
(Angie) Say if somebody thinks that they might have Interstital Cystitis, what would you tell them to do, what would you recommend the first steps be if they don't wanna dive into that hardcore medicine?
(Callie) So IC is a diagnosis of exclusion. A doctor's gonna want to rule everything else out before they give you that diagnosis. I would recommend going to see a gynecologist/urogynecologist/urologist. The doctor will likely want to do a cystoscopy, so that's taking a camera, putting it through the urethra and into the bladder to actually look at the bladder wall because they wanna make sure you don't have anything else going on like cancer. They could also see if you have any lesions or if it is visibly irritated, and for the majority of us our bladders look perfectly healthy, they don't even look irritated. My point is that you don't have to have something show up on your cystoscopy to have IC. You could always try to make some diet changes, do a mini elimination diet where you stop consuming the common bladder triggers like alcohol, caffeine, citrus, tomatoes, chocolate for two to three weeks, and if you get better during that time, then that could be an indicator that it is IC. I would also say work on managing stress because as we both know, that is a huge trigger and that's something that you can kind of take into your hands or control. I want people to know it's not necessary to go right into these invasive methods. It's usually a combination of different treatments.
(Angie) Why do they instantly throw us on these really hardcore medicines like Elmiron?
(Callie) It's because that's what they were trained to do. That's what they perceive as being the best option to help you. This is a drug that we know is causing a lot of issues and there are lawsuits and it shouldn't be considered until you've exhausted other options. Most doctors don't have a lot of education in terms of nutrition or even management for stress and anxiety. They just go into what they know, which is throwing medications at it or invasive procedures. They're not there for you when you're having your flare up, let's just put it that way. There are a lot of different side effects that could happen with any medications, but doctors don't always have the time to discuss those side effects. That's another thing they don't have the time to properly educate people on the diet or that you shouldn't be following the IC diet for the rest of your life. These are conversations that should be had in order to prevent a whole lot of other issues that stem from that, which should be the stress and anxiety that could surround eating. I see a lot of food fear coming out of that initial visit where you're diagnosed and handed the IC diet. I feel like there's more that can be done, they just don't have the time.
(Angie) A lot of the time, these types of chronic invisible illnesses can cause disordered eating, and if you've already had an eating disorder, it's very triggering to then be handed over another diet. I have polycystic ovary syndrome as well and its like, oh you've got to eat this food otherwise this happens. Then with endometriosis i'm gonna avoid this.That can really trigger me, and then I won't eat at all, but that's not gonna help either. So it can be really overwhelming.
(Callie) I have a handful of clients right now who have histories of eating disorders. It's definitely a tough road to learning your dietary triggers and learning your other triggers as well. I feel like there are so many of us with histories of eating disorders or disordered eating that it can be triggering to be handed this diet list or if you have multiple conditions that are overlapping, it's like, well, which diet do you follow? I have a couple clients with both IC and IBS and the diets are pretty different. These are things that people are facing on a daily basis.
(Angie) Yeah. There's not a lot of support for that. I find after you are diagnosed by a medical professional, it is kind of like, you've got this, here's your diet. They have no idea about your disordered eating or your anxiety with it. I have some questions from my people in Australia who are wanting to learn. So what is the best way to help the pain before and during peeing.
(Callie) So for example, if I'm about to have a painful pee, I know ahead of time my bladder is not happy. I make sure that I'm in a comfortable space, like in my house. I will drink a lot of water, at least an 8 ounce glass. If it was a really bad pain during the pee, I will take Azo or Pyridium. You can gut it both over the counter and prescription here, but it numbs the bladder wall and it's not supposed to be taken every day, so I only use it when I'm in a really bad flare. Another thing that I think helps me with burning is I have a product that has peppermint oil in it, which gives that cooling sensation and I'll put it all around the outside of my vagina and it is so wonderful. I know people who will put ice packs down there, that could help. There are other people who find that they prefer a heating pad or something that's warm, so you could go either way. It just depends on what works best for you.
(Angie) Okay great next question. How do you relax the bladder or minimize the constant urgency?
(Callie) I would say if you can try to do something like a meditation or guided relaxation beforehand, you could do some breathing. I would recommend following a couple pelvic floor physical therapists on sites like Instagram or TikTok. There are some really fantastic tips that I see different colleagues putting out, and I think they're fantastic. That would be helpful for somebody who has the urgency. You could try taking a pumpkin seed oil supplement that could potentially help, ask your doctor. Managing stress I think is the biggest thing that can help with any of these symptoms. If you're somebody who has a really small bladder, you might benefit from getting your bladder stretched through a hydro distension. But if you're somebody who has a regular size bladder and you have a lot of frequency, then it might help to do bladder training, which could retrain the nerves in your bladder to know when is the proper time to urinate.
(Angie) So how is this diagnosed and separated from other similar conditions?
(Callie) Like I said earlier, it's a diagnosis of exclusion, so they wanna exclude everything else. Make sure you don't have anything else going on. IC and overactive bladder can have similar symptoms, so urgency and frequency. The other condition that crosses over a lot with IC is pelvic floor dysfunction, you can have pelvic floor dysfunction and not have IC, but there's so many of us that have both so it's hard to know what's causing your symptoms. It's very difficult to determine what the root of the problem is. It's kind of an individual case by case scenario. Interstitial Cystitis can also go by painful bladder syndrome, I've also seen bladder pain syndrome, lots of different terms for it. It is a chronic bladder condition, we have no known cause, no known cure. The theory is that your bladder has a mucosal lining to protect it from all of the potential irritants that are in your pee. Your kidneys are filtering your blood and it takes all of those toxins or waste products out of your body and they end up in the bladder and then you urinate them out. So that mucosal layer, we call it the GAG layer as an abbreviation. The theory is that it is damaged in people with IC. So that's why foods, beverages that are more on the acidic side can be triggering because if they go through these holes it's like acid on an open wound. That's kind of a simplified version of what could be going on. We don't know for sure what's going on, but that medication Elmiron that you mentioned, the aim of that medication is to rebuild that bladder lining. Same with the Aloe Vera, that also aims to do the same thing. We don't have any solid proof of what's going on. For a lot of people, it does get worse at night. That is a common thing. You can have good days where you don't really have any symptoms, but you can also have flares or an increase in your symptoms. There are people who go into remission, basically your symptoms can go away. We don't know who is able to go into remission. It's kind of a gray area. There's a thing called IC belly, it's basically a severe bloat that accompanies a flare and we really don't know a whole lot about what the cause is, but I have a couple theories in my head. So there could potentially be some IBS going on, maybe a sensitivity to a certain food like gluten or dairy products that can cause gas and bloating. Endometriosis I've heard can cause a similar phenomenon.
(Angie) Yeah it does seem like IC and Endometriosis can go hand and hand. Having these conversations is great because not a lot of people are having them and we need it so that people don't feel so alone and frightened and end up taking the wrong thing for them.