Interstitial cystitis

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What is interstitial cystitis?

Interstitial cystitis, also known as painful bladder syndrome, is a non-infectious condition with recurring discomfort or pain in the urinary bladder and the surrounding pelvic region without an identifiable disease.

Common symptoms reported by people with interstitial cystitis

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
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Treatments taken by people with interstitial cystitis

Treatment name(s)
Type
How many have tried
Tried for
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
15
Tried for
interstitial cystitis (8) pain (7)
1 more
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
15
Tried for
interstitial cystitis (12) anxious mood (4)
Treatment name(s)

(Elmiron)
Type
Prescription Drug
How many have tried
15
Tried for
interstitial cystitis (15)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
10
Tried for
pain (9) interstitial cystitis (1)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
9
Tried for
pain (9) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Type
Prescription Drug
How many have tried
8
Tried for
interstitial cystitis (8)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
7
Tried for
anxious mood (7)
Treatment name(s)

(Oxybutynin ER)
Type
Prescription Drug
How many have tried
7
Tried for
interstitial cystitis (4) urinary urgency (4)
2 more
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
6
Tried for
pain (6)
Treatment name(s)

(Wellbutrin XL)
Type
Prescription Drug
How many have tried
5
Tried for
depressed mood (5) fatigue (1)

Data from patients with interstitial cystitis, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with interstitial cystitis

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Elavil)
Perceived effectiveness
for interstitial cystitis (15 evaluations)
Side effects
drowsiness weight gain 7 more
Total evaluations
19
Tried for
interstitial cystitis (8) pain (7)
1 more
Treatment name(s)

(Vistaril)
Perceived effectiveness
for interstitial cystitis (7 evaluations)
Side effects
drowsiness dry mouth 1 more
Total evaluations
7
Tried for
interstitial cystitis (12) anxious mood (4)
Treatment name(s)

(Elmiron)
Perceived effectiveness
for interstitial cystitis (9 evaluations)
Side effects
hair loss dry mouth 1 more
Total evaluations
9
Tried for
interstitial cystitis (15)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (4 evaluations)
Side effects
drowsiness
Total evaluations
4
Tried for
pain (9) interstitial cystitis (1)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (7 evaluations)
Side effects
anxious mood confusion 5 more
Total evaluations
8
Tried for
pain (9) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Perceived effectiveness
for interstitial cystitis (8 evaluations)
Side effects
amber colored urine nausea if taken on empty stomach 3 more
Total evaluations
7
Tried for
interstitial cystitis (8)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
drowsiness loss of balance
Total evaluations
4
Tried for
anxious mood (7)
Treatment name(s)

(Oxybutynin ER)
Perceived effectiveness
for interstitial cystitis (2 evaluations)
Side effects
dry mouth
Total evaluations
3
Tried for
interstitial cystitis (4) urinary urgency (4)
2 more
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (3 evaluations)
Side effects
chronic constipation occasional euphoria
Total evaluations
3
Tried for
pain (6)
Treatment name(s)

(Wellbutrin XL)
Perceived effectiveness
for depressed mood (4 evaluations)
Side effects
anxious mood irregular menstrual periods 3 more
Total evaluations
4
Tried for
depressed mood (5) fatigue (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with interstitial cystitis, who reported starting treatments within the last 5 years.
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Who has interstitial cystitis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 3
20s 82
30s 235
40s 363
50s 328
60s 172
70+ 36
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 135
20-29 years 177
30-39 years 158
40-49 years 132
50-59 years 49
60-69 years 10
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 44
Female 1,180

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 793
Not Diagnosed 46

These charts show data from interstitial cystitis patients who have completed their condition history
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