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
13
Tried for
interstitial cystitis (13)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
12
Tried for
interstitial cystitis (7) pain (5)
1 more
Treatment name(s)

(Vistaril)
Type
Prescription Drug
How many have tried
12
Tried for
interstitial cystitis (11) anxious mood (2)
Treatment name(s)

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

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

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

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

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

(Oxybutynin ER)
Type
Prescription Drug
How many have tried
6
Tried for
interstitial cystitis (4) urinary urgency (3)
2 more
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
5
Tried for
fatigue (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 dry mouth 1 more
Total evaluations
8
Tried for
interstitial cystitis (13)
Treatment name(s)

(Elavil)
Perceived effectiveness
for interstitial cystitis (14 evaluations)
Side effects
drowsiness craving carbs 7 more
Total evaluations
18
Tried for
interstitial cystitis (7) pain (5)
1 more
Treatment name(s)

(Vistaril)
Perceived effectiveness
for interstitial cystitis (7 evaluations)
Side effects
drowsiness dry mouth 2 more
Total evaluations
7
Tried for
interstitial cystitis (11) anxious mood (2)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (8 evaluations)
Side effects
anxious mood confusion 5 more
Total evaluations
9
Tried for
pain (10) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Perceived effectiveness
for interstitial cystitis (9 evaluations)
Side effects
amber colored urine nausea if taken on empty stomach 2 more
Total evaluations
7
Tried for
interstitial cystitis (8)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (3 evaluations)
Side effects
drowsiness
Total evaluations
3
Tried for
pain (7) interstitial cystitis (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (1 evaluation)
Side effects
drowsiness
Total evaluations
1
Tried for
anxious mood (6)
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)

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

(Adderall)
Perceived effectiveness
for fatigue (4 evaluations)
Side effects
aggressive behavior anorexia nervosa 4 more
Total evaluations
4
Tried for
fatigue (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 3
20s 82
30s 237
40s 374
50s 366
60s 185
70+ 44
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 139
20-29 years 180
30-39 years 158
40-49 years 133
50-59 years 49
60-69 years 10
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 52
Female 1244

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 809
Not Diagnosed 46

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