K.N.O.W. Home Health - INTERSTITIAL CYSTITIS

Patient Education: Interstitial Cystitis (IC)

What It Is

Interstitial cystitis (IC) is a long-term condition that causes pain, pressure, or discomfort in the bladder and pelvic area. It often makes you feel like you need to urinate more often than normal, even if your bladder isn’t full. IC is not caused by an infection, but it can feel like a urinary tract infection (UTI).

Causes and Risk Factors

The exact cause is unknown, but possible factors include:

Damage to the bladder lining
Problems with the immune system
Nerve problems that make the bladder extra sensitive
Past bladder infections
Certain chemicals in urine that irritate the bladder

Risk factors:

Being female (IC is more common in women)
Being age 30 or older
Having other chronic pain conditions (like fibromyalgia or irritable bowel syndrome)
History of urinary tract problems

Signs and Symptoms

Ongoing bladder or pelvic pain
Frequent urination (more than 8 times a day)
Strong, sudden urge to urinate
Pain during sexual activity
Symptoms that get worse during certain times (like during stress, after certain foods, or during menstrual periods in women)

Early warning signs:

Needing to urinate more often than usual
Burning or discomfort in the bladder without infection
Pain that gets worse as your bladder fills and feels better after you urinate

Complications if Untreated or If Care Plan Is Not Followed

Ongoing bladder pain and discomfort
Trouble sleeping due to frequent urination
Reduced quality of life and mood changes (anxiety, depression)
Pain during intimacy
Possible bladder wall scarring or reduced bladder size over time

Treatment and Self-Care Measures

Avoid foods and drinks that make symptoms worse (like coffee, alcohol, citrus, tomatoes, spicy foods, artificial sweeteners)
Practice bladder training — slowly increase time between bathroom trips
Use relaxation techniques to lower stress
Wear loose-fitting clothing
Stay hydrated, but sip water throughout the day instead of drinking large amounts at once
Use heat or cold packs on the bladder area for pain relief
Pelvic floor physical therapy if recommended by your provider

Common Types of Medications

Oral medications:
- Pentosan polysulfate sodium — helps protect bladder lining; possible side effects: upset stomach, hair loss, rare vision changes
- Antihistamines — reduce bladder inflammation; side effects: drowsiness, dry mouth
- Antidepressants (low dose) — help reduce nerve pain; side effects: dry mouth, dizziness, weight changes
Bladder instillations — medicine placed directly into the bladder to reduce pain and swelling; may cause temporary discomfort during the procedure
Pain relievers — for short-term relief; may cause stomach upset or constipation

Dietary and Lifestyle Changes

Keep a food and symptom diary to find triggers
Limit or avoid caffeine, alcohol, acidic foods, artificial sweeteners, and spicy foods
Eat bladder-friendly foods like pears, blueberries, green beans, cucumbers, and rice
Manage stress through gentle exercise, meditation, or yoga
Get enough rest to help your body heal

Safety Considerations

Take medicines exactly as prescribed
Report new or worsening symptoms to your provider right away
Avoid overusing over-the-counter pain medicine, which can harm kidneys or stomach
If you are on pentosan polysulfate sodium, get regular eye exams as recommended

Prevention and Maintenance Tips

Follow your bladder-friendly diet and avoid known triggers
Stick to your bladder training schedule
Keep stress low to reduce flare-ups
Stay consistent with treatments and follow-up appointments
Treat any bladder infections quickly to avoid making IC worse

When to Call for Help

Call your Home Health Agency or Doctor if:

Pain suddenly gets worse or changes in type/location
You notice blood in your urine
You have trouble urinating or your symptoms don’t improve with treatment
You have side effects from medications

Call 911 or Go to the Emergency Room if:

You cannot urinate at all (urinary retention)
You have severe pain with fever and chills
You have sudden weakness, confusion, or allergic reaction (trouble breathing, swelling, rash)

True or False Assessment

Instructions: Read each statement carefully. Answer True or False. Correct any that are False so the statement becomes true.

True/False: Interstitial cystitis is the same as a urinary tract infection.
True/False: Women are more likely to develop interstitial cystitis than men.
True/False: Caffeine and alcohol can make IC symptoms worse.
True/False: Bladder training means going to the bathroom as soon as you feel the urge.
True/False: Pain during sexual activity can be a symptom of IC.
True/False: IC can cause frequent urination even when the bladder is not full.
True/False: A bladder instillation is medicine placed directly into the bladder.
True/False: Pentosan polysulfate sodium helps protect the bladder lining.
True/False: Acidic foods like citrus and tomatoes may trigger symptoms.
True/False: Stress has no effect on IC symptoms.
True/False: Regular eye exams are important for patients taking pentosan polysulfate sodium.
True/False: Loose-fitting clothes can help reduce bladder discomfort.
True/False: IC can be cured completely with antibiotics.
True/False: Heat or cold packs can be used on the bladder area to relieve pain.
True/False: Following a bladder-friendly diet can help prevent flare-ups.
True/False: Overusing over-the-counter pain medicine can be harmful.
True/False: IC is a short-term condition that usually goes away in a week.
True/False: IC may require long-term lifestyle changes to control symptoms.
True/False: Blood in the urine should be reported to a doctor right away.
True/False: Pelvic floor physical therapy may help some people with IC.

ASSESSMENT of WELL-BEING INDIVIDUALIZED PATIENT HOMEWORK

Individualized Patient Questions

(These help apply the education to the patient’s own care plan)

What tests or evaluations has your doctor ordered for your bladder symptoms? (Examples: urine tests, cystoscopy, bladder capacity tests)
Do you know the results of these tests and what they mean for your care?
Which medications are you currently taking to control your interstitial cystitis?
What is your medication schedule and dosage?
Have you noticed any side effects from your medication?
Which foods or drinks have you found make your symptoms worse?
What strategies or routines help you manage stress and reduce bladder flare-ups?