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)

(Elmiron)
Type
Prescription Drug
How many have tried
19
Tried for
interstitial cystitis (19)
Treatment name(s)

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

(Vistaril)
Type
Prescription Drug
How many have tried
14
Tried for
interstitial cystitis (12) anxious mood (3)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
11
Tried for
pain (10) interstitial cystitis (1)
Treatment name(s)

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

(Neurontin)
Type
Prescription Drug
How many have tried
8
Tried for
pain (8) interstitial cystitis (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
6
Tried for
anxious mood (6)
Treatment name(s)

(Lyrica)
Type
Prescription Drug
How many have tried
6
Tried for
pain (4) interstitial cystitis (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
5
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Type
Procedures
How many have tried
4
Tried for
pain (4)

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 nausea
Total evaluations
8
Tried for
interstitial cystitis (19)
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)
1 more
Treatment name(s)

(Vistaril)
Perceived effectiveness
for interstitial cystitis (6 evaluations)
Side effects
drowsiness dry mouth 1 more
Total evaluations
6
Tried for
interstitial cystitis (12) anxious mood (3)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (5 evaluations)
Side effects
drowsiness dizziness 1 more
Total evaluations
5
Tried for
pain (10) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Perceived effectiveness
for interstitial cystitis (9 evaluations)
Side effects
orange colored urine amber colored urine 3 more
Total evaluations
8
Tried for
interstitial cystitis (9)
Treatment name(s)

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

(Klonopin)
Perceived effectiveness
for anxious mood (4 evaluations)
Side effects
drowsiness loss of balance
Total evaluations
4
Tried for
anxious mood (6)
Treatment name(s)

(Lyrica)
Perceived effectiveness
for pain (2 evaluations)
Side effects
brain fog breathing difficulty 4 more
Total evaluations
7
Tried for
pain (4) interstitial cystitis (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (2 evaluations)
Side effects
weight gain
Total evaluations
3
Treatment name(s)

(Chinese acupuncture and aravedic herbs)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (4)
  • 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 227
40s 357
50s 319
60s 170
70+ 34
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 132
20-29 years 174
30-39 years 157
40-49 years 132
50-59 years 49
60-69 years 10
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 43
Female 1,153

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 784
Not Diagnosed 45

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