Meet Breanne Rodgers. Breanne is 21 years old and from Huntsville, Alabama. Recently, she went mega viral on TikTok when she posted a video of her experience trying to get what felt like “constant UTIs” diagnosed and treated. More than a year and multiple doctors later, she was finally able to get an accurate diagnosis — and it wasn’t chronic urinary tract infections at all.
Instead, it was interstitial cystitis — also commonly referred to as “painful bladder syndrome” — which, despite affecting millions of people, can often be dismissed or misdiagnosed.
In the video posted to her TikTok account — which has since been viewed over a million times — Breanne can be seen discussing her experience with what felt like "constant UTIs," despite "having no reason [she] could think of to have a UTI." She goes on to explain that cranberry juice and antibiotics, two avenues commonly pursued in the treatment of urinary tract infections, had no impact on the discomfort she was feeling, and actually ended up making her feel worse. It was a struggle to find an answer for what was going on with her body before she was finally told she was living with interstitial cystitis.
And based on the comments section on Breanne's TikTok, there's even more evidence that this is more common than we may think.
BuzzFeed caught up with Breanne to ask her more about her experience, and she told us, "I had been experiencing this incredible pain that disguised itself as a urinary tract infection. Every time I would tell my friends and mom about my symptoms, they would point out how often I was experiencing this and vocalize that they could not relate. I felt so alone and like something must be wrong with me."
In order to get more information about this relatively common but misunderstood condition, we spoke with some experts in the field: Dr. Emily C. Von Bargen, a urogynecologist and medical adviser to vaginal health brand Cheeky Bonsai; Stephanie A. Prendergast, MPT, an all-around expert on pelvic health with the Pelvic Health and Rehabilitation Center; and Krystal Thomas-White, PhD, a senior scientist at vaginal health brand Evvy.
First: What exactly is interstitial cystitis? Also commonly referred to as painful bladder syndrome, this condition is identified most commonly by chronic pelvic pain.
And while this condition is not as uncommon as it may seem, diagnosis remains somewhat tricky because, as Thomas-White pointed out to BuzzFeed, interstitial cystitis/painful bladder syndrome is a diagnosis of exclusion. "That means that it doesn’t have a known cause. People diagnosed with IC/PBS must have all other possible diagnoses excluded, from UTIs to cancer. If you don’t fit into one of the medically defined boxes that we know causes pelvic pain, then you get placed into the IC/PBS category."
But in those patients who do appear to have IC/PBS, there are few widely accessible treatment options, and no known cure at this stage. Thomas-White told BuzzFeed that while there has been a lot of research done to try to identify the cause of IC/PBS, the culprit has yet to be found. Bacterial, viral, and fungal infections have all been looked at, and all show some promise, Thomas-White said. But nothing has come up as the obvious cause. Therefore, she added, "It is likely that people living with IC/painful bladder syndrome come about their symptoms in different ways."
And while there are some treatment options available for this condition, there is still a lot that we don't know. In her video, Breanne mentioned being put on something that is commonly referred to as the "IC diet." Oftentimes, people living with this painful condition can find that their pain is made worse with certain "trigger foods," like coffee, spicy seasonings, and acidic substances (like cranberry juice!) But as with many chronic pain conditions, while there are some avenues of treatment, nothing has been proved to be 100% effective for all patients living with this condition.
Stephanie Prendergast often sees IC or painful bladder syndrome in her practice. "The general medical community does not understand this condition. This is a limitation to effective treatment plans. Many patients are told they have an incurable disease by underinformed doctors, and may be handed a ‘one size fits all’ approach of prescription medication and bladder instillations from purported ‘experts.'"
Another reason people continue to suffer, Prendergast said, is that there is no one-size-fits-all approach to management of this condition, and a lack of truly informed doctors and physical therapists is an added barrier to care. She added that she has had tremendous success in her own practice by using critical reasoning and an interdisciplinary network to help her patients resolve their symptoms.
Studies show that over 90% of people with IC also have pelvic floor dysfunction, but, Prendergast said, they need to see a pelvic floor physical therapist skilled in managing pelvic pain. The number of pelvic floor PTs who are available to treat pain is even less than the small number of PTs who can treat other types of pelvic floor dysfunction. Thomas-White added that, unfortunately, like so many aspects of vaginal and urinary health (and most of female healthcare overall!), these conditions are under-researched and broadly defined, which makes effective diagnostics and treatments unattainable for many living with this condition (and others like it).