Relieving the pain of interstitial cystitis: Advice from an expert who’s been there

Callie Krajcir says she can’t remember a time when it didn’t hurt to pee. 

“When I was a little girl, I just assumed that terrible burning sensation was normal,” she says. “It took years before I understood what was actually happening inside my bladder.” 

Now a registered dietitian who specializes in helping women with interstitial cystitis (IC), Callie recently spoke with the MyUTI team about nutrition, bladder pain and how to achieve lasting relief. 

Hi Callie! Thanks so much for taking time out to help us understand the interplay between nutrition and chronic bladder pain. 

Absolutely! In my practice, I’ve found there are so many things that women want to learn more about, especially if they haven’t come across a solution for all the discomfort they’re living with. 

Q: Before you entered the health profession, you experienced a lifetime of bladder pain. Can you tell us what that was like?

From a very early age, I felt a burning sensation when I went to the bathroom. Unfortunately, doctors didn’t know how to help me. In high school, I saw a urologist who did a hydrodistention, where the bladder is filled to the limit with water while the physician uses a scope to look inside. The treatment itself was excruciating, and afterward I needed to pee even more often, which only increased the pain I was living with. 

In college, I started seeing different specialists, who recommended invasive treatments – Botox, bladder instillations and even surgery. None of these procedures worked. I felt so defeated and alone.

I didn’t take a serious look at nutrition until I hit rock bottom. When I finally did, I realized that not one of the experts I had consulted had ever asked me about diet, stress, or any of the other factors that can make IC pain much worse. 

 Wow! That sounds like a long, agonizing journey. 

 It is – but sadly, it’s not an unusual one. Many women are walking the same road, which is why I decided to become a licensed dietitian and coach focusing on interstitial cystitis, one of several diagnoses that fall within the spectrum of painful bladder syndrome.

Q: When women come to you with chronic bladder pain, how do you help them? 

 I take a holistic approach with my clients, offering them as much knowledge as I can. We don’t yet know exactly what causes IC, but I begin with what we do know. IC is an inflammation of the bladder lining that is NOT caused by bacteria and other pathogens, so it’s different from a urinary tract infection. This can be confusing, because many clients have seen multiple doctors who have diagnosed them with chronic or recurring UTIs and perhaps given them rounds and rounds of antibiotics. 

Additionally, we now have access to comprehensive tests that may help rule out UTIs caused by bacteria or fungi. Modern testing, like the MyUTI Test, uses PCR technology. This allows us to identify the DNA of the most common symptom causing pathogens – the bad guys! This can be a useful tool to eliminate this as the cause, just as with an elimination diet. 

Q: What does IC pain feel like? 

The symptoms are very similar to what people feel with a UTI. There’s pain and pressure in the pelvic area around the bladder. It hurts to pee. And there’s that urgency of needing to go often, but the volume of urine is low. 

Q: How do the foods and drinks we consume add to IC pain? 

Many foods can cause IC pain to flare up. The goal is to find which ones are the “bad guys” for each individual. We want to avoid food fear, which can actually bring people to the brink of disordered eating. The goal is to gain confidence in knowing what’s harmful and simply avoiding it while not developing anxiety around ALL foods.

With all the summer cookouts, food can be stressful, so I also am offering an IC-Friendly Summer Eats E-Cookbook!  

Q: How do you identify trigger foods?

We use an elimination diet to identify foods that might aggravate a client’s IC symptoms. Many people are confused about how an elimination diet works, so we begin by getting clear on that. It starts with a baseline period, where we track what the client eats, what pain levels they are experiencing and how often they’re peeing. The second phase is elimination, where the client follows a bladder-friendly diet for several weeks, staying away from foods that often act as IC pain triggers. Third is the testing phase, where we start adding back any foods that were eliminated earlier. We add them back one at a time so that, if and when the pain returns, we have a good idea which food caused it.

Q: Which foods and drinks are known triggers for bladder pain? 

 What might cause problems for one person might be totally fine for another, so I don’t hand out long checklists that can get people worried about everything they’re putting in their mouths. Generally, IC pain triggers might include caffeine, alcohol, artificial sweeteners, sugar, dairy, citrus and spicy foods – but only an elimination diet will reveal what’s harmful for you and what is totally fine to consume. These can be the same triggers as a UTI, which is why working with a dietician and clinician focused on IC and chronic UTIs are key to navigating solutions.

 Q: Is it enough to identify individual triggers, or do people need other kinds of help? 

Since our culture is so food-focused, people need social support to find substantial relief from IC pain. I’ve developed a  treatment protocol that adds education and support groups to the mix. My clients get together regularly to share experiences and tips with one another. Learning in a caring, friendly group setting can make an amazing difference. 

It’s surprising how much shame and anxiety there can be around bladder pain. Most of my clients don’t have anyone in their lives who understands what they’re going through! Many have endured medical gaslighting, which makes them feel isolated and guilty. Since stressful feelings like these can aggravate IC pain, clients need ways to address the negative emotions they’ve been carrying around – often for years. 

All of this is specifically WHY I have introduced my program called Road To Remission. It is a 12-week program with lifetime access. Basically guiding people to identify their dietary and non-diet triggers as well as build confidence with eating.

 Q: What else can be done to help people living with IC?

Medical professionals need to know more about this condition. Misdiagnosis is more common than you might think. I also wish doctors would not hand people lists of “bad foods” without context and explanation. Patients get the impression they can’t ever eat those foods again, which is a recipe for anxiety and possibly even disordered eating. We need to take our time and give people the tools they need to adjust their eating habits one healthy step at a time. 

Q: Any other advice for women who’ve tried everything, without success?

Think of nutrition as one important piece of the puzzle. Stress reduction is another. For me, physical therapy focusing on the pelvic floor was also essential. Trying a combination of approaches is the best way to reduce your IC symptoms over time. 

HUGE THANKS TO Callie for all her support and time!

LEARN MORE about IC & nutrition through her Road to Remission Program

FOLLOW her on Instagram.