What is Interstitial Cystitis?

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Interstitial Cystitis (IC) affects an estimated 3 to 8 million females in the United States (1). Yet still, bladder health is severely under researched so there is no known cure for IC at this time. Although there is no cure for IC, there are a few known lifestyle changes that can help relieve symptoms of IC.

We want to make sure you have access to the information you need to navigate your IC diagnosis, so here’s everything we know about IC.

IC is a chronic condition that can cause bladder pressure, bladder pain, and sometimes pelvic pain. IC is sometimes referred to as Bladder Pain Syndrome, or BPS. The bladder becomes inflamed and/or irritated and can lead to scarring and stiffening of the bladder. This leads to the bladder not being able to hold as much urine as it did in the past (2). It is not an infection but can feel like a bladder infection (1).

Symptoms can vary from person to person and periodically flare up in response to triggers such as menstruation, sitting for long periods, stress, exercise, and sexual activity. The symptoms of IC may resemble chronic UTIs, but when testing for a UTI there is no infection detected.

• Symptoms include:
  • Pain in pelvis or between the vagina and anus in females; in between the scrotum and anus in males
  • Chronic pelvic pain
  • Discomfort in the urethra, lower abdomen, or lower back
  • Persistent, urgent need to urinate
  • Frequent urination, often small amounts throughout the day and night (up to 60 times/day)
  • Pain or discomfort while the bladder fills and relief after urination
  • Pain during sex

The pain can range from mild discomfort to severe pain (3). Along with the pain are lower urinary tract symptoms that have lasted for more than 6 weeks without having an infection of other clear causes (1).

Symptoms may worsen if someone with IC gets a UTI, or during menstruation (3,4).

Since the exact cause of IC is unknown – a diagnosis and treatment of IC can be difficult. To diagnose IC, doctors will use a combination of medical history, physical exams, and lab tests.

Some potential causes of IC could be issues with bladder lining, allergies, or autoimmune diseases (1,3). IC is more common in females than males and up to 12% of females may have early symptoms of IC (5).

Typically a diagnosis of IC will occur after ruling out other diseases or conditions such as UTIs, bladder cancer, endometriosis, or prostatitis. If someone tests negative for all known conditions, but still presents symptoms including pain in or near the bladder accompanied with urinary frequency or urgency – IC may be the diagnosis.

Some tests that may be conducted to conclude an IC diagnosis may include (2,3):

• Urinalysis and urine cultures
• Cystoscopy 
• Hydrodistention, filling of the bladder with water to stretch it as big as possible which may reveal ulcers or cracks in the bladder.
• Biopsy of bladder wall and urethra
• Potassium sensitivity test – water and potassium chloride are injected one at a time into the bladder and the patient is asked to rate urgency on a scale of 0-5. Those that feel more pain or urgency with the potassium solution may be diagnosed with IC
• Exam of prostate secretions, only for males

Even though IC affects an estimated 3 to 8 million females in the United States – bladder health is still severely under researched and there is no known cure for IC at this time.

The good news is that there are a few known lifestyle changes that can help relieve symptoms of IC.

• Physical therapy with a pelvic floor physical therapist to help reduce pelvic floor muscle spasms

• Limiting stress. We know this one is easier said than done, especially when you don’t feel your best. That’s why we asked mental health experts for their tips on managing stress.

• Be mindful of the foods you eat. We asked Dr. Payal Bandhari which foods are best and worst for IC.

It’s important to know that it could take several weeks or months after treatment initiation before symptoms start to improve. Try to stay on a treatment plan even if symptoms improve, to ensure that you continue making progress to feeling your best.

Some other known methods for IC management include, bladder instillations, electric nerve stimulations, botox injections into the bladder muscles to help alleviate pain and bladder and bowel training to help the bladder hold more urine and encourage regular bowel movements (4,6,7).

Although there is no cure for IC, it is not currently known to be life-threatening and it is not known to lead to cancer (7).

If you’ve received a diagnosis for IC, here are a few questions you can prepare to ask your doctor:

• What treatment plan do you suggest for me and why?

• What can I do about my chronic pain?

• Will IC/BPS (bladder pain syndrome) affect other parts of my body?

• Does drinking less water help? How can I avoid flare-ups?

• How are bladder spasms treated?

• Will an antidepressant help me?

• Where can I go for more information and support?

• Can I have IC/BPS and still be intimate?

• What is the long-term treatment plan for me?

• Will I ever be cured?

• How can you tell that I have IC/BPS?

• If I don’t have IC/BPS, what other condition might I have?

• What tests will you conduct to confirm your diagnosis?

• Are there any side effects to your recommended treatment?

• Do you recommend one treatment option or a combination of treatments?

• Are there any other foods or drinks I should avoid?

• What lifestyle changes can help manage my symptoms?

• Should I see a dietitian, urologist or another specialist?

• (Ref: 1,4)

Many researchers and leading clinicians now believe that recurrent urinary tract infections, and the immune response driving inflammation of UTI symptoms, could be at least one of if not the cause of IC. Read more about the theory here.

1. Interstitial cystitis. What is Interstitial Cystitis(IC)/Bladder Pain Syndrome? Urology Care Foundation. (2023, February).

2. Johns Hopkins Medicine. (2021, August 8). Interstitial cystitis. Interstitial Cystitis | Johns Hopkins Medicine. https://www.hopkinsmedicine.org/health/conditions-and-diseases/interstitial-cystitis

3. Mayo Foundation for Medical Education and Research. (2021, September 29). Interstitial cystitis. Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/symptoms-causes/syc-20354357

4. Cleveland Clinic. (2022, November 23). Interstitial cystitis (painful bladder): Causes & symptoms. Cleveland Clinic. https://my.clevelandclinic.org/health/diseases/15735-interstitial-cystitis-painful-bladder-syndrome

5. Centers for Disease Control and Prevention. (2022, June 14). About interstitial cystitis. What is Interstitial Cystitis (IC)? https://www.cdc.gov/ic/about/index.html

6. U.S. Department of Health and Human Services. (2017, July). Definition & Facts of interstitial cystitis - NIDDK. National Institute of Diabetes and Digestive and Kidney Diseases. https://www.niddk.nih.gov/health-information/urologic-diseases/interstitial-cystitis-painful-bladder-syndrome/definition-facts

7. National Kidney Foundation. (2022, August 15). Interstitial cystitis. https://www.kidney.org/atoz/content/interstitial