What is Interstitial Cystitis aka IC?

Dropping in with your weekly dose of Uqora and urinary health news

Interstitial Cystitis affects an estimate of 3 to 8 million women

Interstitial Cystitis (also known as IC) is a general term for chronic bladder pain. IC is typically diagnosed based on exclusion meaning you are experiencing painful urinary symptoms, but are testing negative for an infection. IC is an incredibly frustrating diagnosis and experience for millions of people because it can often feel like there aren't any solutions. Let's break down what IC is and what to do if that's your diagnosis.

What is IC?

IC can possibly be explained by two types of recurrent UTIs: 1) UTIs caused by hidden bacteria and 2) UTIs caused by uncommon bacteria.

UTIs caused by hidden bacteria: A negative urine culture does not necessarily mean that an infection is not present and causing the symptoms of IC. The bacteria could be hiding within biofilm or tissue and are not present in the urine.

UTIs caused by unusual bacteria: Not all microbes will show up in a urine culture. Repeat negative cultures leading to an IC diagnosis may be a recurrent UTI (rUTI) caused by an unusual and difficult-to-detect pathogen.

What if I'm diagnosed with IC?

If you're currently experiencing chronic bladder pain and urine cultures coming back as negative, it's important to know you are not alone and there are things you can do to ensure that is in fact the proper diagnosis.

Rule out a possible embedded infection: There is strong evidence that rUTI is at least one likely cause of IC. New UTI testing techniques like DNA sequencing (aka microgen testing) and enhanced quantitative urine cultures (EQUC) are more sensitive and test for a wider range of potential pathogens. It's possible a standard urine culture test is inadequate.

Find a specialist to help: It's important to find a healthcare specialist that understands the complexities of IC and rUTI. We understand this is easier said than done. If you're currently looking for a specialist, check out our Good Doc Club for resources.

Join a support community: IC is complex and with limited research. Because there isn't enough clear research, not everyone in the medical community can agree on causes and explanations of IC. That's frustrating but it's important to know you are not alone and your experience is valid. We asked a Uqora customer to share her experience with IC here, which includes some helpful insights on what's helped her navigate this diagnosis.

Helpful links

If you want to dive deeper into IC, UTI testing and embedded UTIs, we recommend these additional reads:

My journey with IC

Hear from a Uqora customer living with IC. Read more

Connect with others just like you

The Uqora Collective is a safe place for people to connect, share stories and swap tips all about urinary health. It's important to know you are not alone.

When you join, introduce yourself to the group and share something about your urinary health journey. You'll be amazed how many people are willing to share and help. We're all in this together!

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