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, insomnia, fatigue, and pain) 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)

(Elmiron)
Type
Prescription Drug
How many have tried
20
Tried for
interstitial cystitis (20)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
16
Tried for
interstitial cystitis (8) Pain (8)
2 more
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
13
Tried for
interstitial cystitis (11) Anxious mood (3)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
13
Tried for
Pain (12) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Type
Prescription Drug
How many have tried
10
Tried for
interstitial cystitis (10)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
8
Tried for
Pain (7) Insomnia (1)
1 more
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
8
Tried for
Pain (6) interstitial cystitis (2)
Treatment name(s)

(Desyrel)
Type
Prescription Drug
How many have tried
7
Tried for
Insomnia (7)
Treatment name(s)

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

(Klonopin)
Type
Prescription Drug
How many have tried
5
Tried for
Anxious mood (5)

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)

(Elmiron)
Perceived effectiveness
for interstitial cystitis (8 evaluations)
Side effects
Hair loss
Total evaluations
8
Tried for
interstitial cystitis (20)
Treatment name(s)

(Elavil)
Perceived effectiveness
for interstitial cystitis (14 evaluations)
Side effects
Drowsiness Weight gain 7 more
Total evaluations
18
Tried for
interstitial cystitis (8) Pain (8)
2 more
Treatment name(s)

(Vistaril)
Perceived effectiveness
for interstitial cystitis (3 evaluations)
Side effects
Drowsiness Dry mouth 1 more
Total evaluations
3
Tried for
interstitial cystitis (11) Anxious mood (3)
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (6 evaluations)
Side effects
Drowsiness Dizziness 2 more
Total evaluations
6
Tried for
Pain (12) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Perceived effectiveness
for interstitial cystitis (6 evaluations)
Side effects
Nausea if taken on empty stomach Stomach pain 1 more
Total evaluations
5
Tried for
interstitial cystitis (10)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (8 evaluations)
Side effects
Anxious mood Confusion 6 more
Total evaluations
9
Tried for
Pain (7) Insomnia (1)
1 more
Treatment name(s)

(Lyrica)
Perceived effectiveness
for Pain (6 evaluations)
Side effects
Drowsiness Anxious mood 8 more
Total evaluations
11
Tried for
Pain (6) interstitial cystitis (2)
Treatment name(s)

(Desyrel)
Perceived effectiveness
for Insomnia (2 evaluations)
Side effects
Dry mouth
Total evaluations
2
Tried for
Insomnia (7)
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (3 evaluations)
Side effects
Chronic constipation Drowsiness 1 more
Total evaluations
3
Tried for
Pain (6)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for Anxious mood (4 evaluations)
Side effects
Drowsiness Loss of balance
Total evaluations
4
Tried for
Anxious mood (5)
  • 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 2
20s 76
30s 203
40s 312
50s 288
60s 145
70+ 28
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 129
20-29 years 165
30-39 years 151
40-49 years 129
50-59 years 46
60-69 years 10
70+ years 0

Sex

Distribution of sex

97% Female
3% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 696
Not Diagnosed 44

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