Interstitial Cystitis: Managing Painful Bladder Syndrome

Interstitial cystitis (IC) is one of those health conditions you’ve probably only heard of if you have it, or you think you might. Like most pelvic health issues, it’s not widely known or discussed, which is actually surprising given that it affects an estimated 3 to 8 million women in the US— and research shows it’s probably even more widespread than we think. It’s also enchantingly referred to as “Painful Bladder Syndrome,” but no matter what you call it, IC is universally characterized by chronic bladder pain.

Awareness of IC — and all the conditions it often goes hand in hand with, including endometriosis, chronic fatigue syndrome, and IBS— is growing thanks to moments like Lena Dunham opening up about her spasming bladder on Instagram. But, even for people who are clinically diagnosed with IC, it can be difficult to find medically accurate information and resources to manage their symptoms.

To learn more about life with interstitial cystitis, we chatted with Brenda, a friend of the blog who has navigated symptoms for years, and Dr. Kimberly Ferrante, a uro-gynecologist who specializes in pelvic floor disorders.

Interstitial cystitis symptoms

Dr. Ferrante explains that, depending on the intensity of your condition, symptoms can vary widely. Still, most people with IC experience some of the following:

• Recurring pelvic pain, pressure, or irritation— especially after eating acidic foods like tomatoes and oranges, or carbonated, sugary drinks

• Urgent need to pee, anywhere from 40 to 70 times a day (in early or very mild cases, this can be the only symptom)

• Pain or spasms while peeing

• Discomfort or pain during sex

• Depression, anxiety, or sleep deprivation because of the constant need to go

Bathroom breaks upwards of 70 times a day *seem* like a very obvious indicator of IC, but many people get misdiagnosed with chronic UTIs, which can lead to months or years of frustration before learning about the underlying cause of your discomfort. For Brenda, diagnosis took five long years, and even then she struggled to find resources and a supportive community. After going through her own experience, Brenda is adamant that “we've got to talk about stuff like this more so no one feels alone like I did.”

Causes of interstitial cystitis

Dr. Ferrante says the underlying cause of IC is still a mystery, but healthcare professionals have a few theories. Triggers such as pelvic floor muscle dysfunction, autoimmune disorders, bacterial infections, bladder trauma from pelvic surgery, and even allergies have all been suggested as contributors to the onset of interstitial cystitis. 

Women, people with chronic pain disorders, fair skinned people, and people over the age of 30 are all more likely to have IC than other groups.

Next steps after diagnosis

Since the root cause of IC is still unknown, there is no cure-all for symptoms. That said, Dr. Ferrante explains that there are definitely ways to manage your symptoms so you can start to feel better. She explains that "increased stress levels can trigger flare-ups so we try to manage that first.” Whether that means meditating, finding a therapist, or jump-starting an exercise routine, finding a way to relax and manage stress is key to navigating IC comfortably.

Pelvic floor therapy is also a potential way to manage symptoms. A pelvic health PT can help you identify whether lax or hypertonic muscles are exacerbating painful bladder spasms, pain during sex, and other IC symptoms. Plus, you’ll get a treatment plan that’s designed to meet your body’s unique needs.

Research hasn’t conclusively shown that diet can curb IC, but it’s still widely believed that monitoring and adjusting your diet helps keep flare-ups at bay. Figuring out your triggers takes time, and they can vary from person to person, but keeping a bladder diary can expedite the process so you start feeling better faster. 

No matter how you approach symptom management, take Brenda's lead and don't stay silent: “I talk about it because I want people to know that if you have it, you can manage it— and it’s hard to know what works and what doesn't without support.” Moral of the story: navigating IC (and any health condition, to be honest) requires self-care, community support, and a commitment to getting yourself the care you and your body deserve— even if finding the methods that work for you takes a bit longer than you’d like.

Do you have interstitial cystitis? How do you manage your symptoms? Share your story in the comments.