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)

(Vistaril)
Type
Prescription Drug
How many have tried
13
Tried for
interstitial cystitis (12) anxious mood (2)
Treatment name(s)

(Elmiron)
Type
Prescription Drug
How many have tried
12
Tried for
interstitial cystitis (12)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
10
Tried for
interstitial cystitis (6) pain (4)
1 more
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
7
Tried for
interstitial cystitis (7)
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)

(Ultram)
Type
Prescription Drug
How many have tried
6
Tried for
pain (5) interstitial cystitis (2)
Treatment name(s)

(Adderall)
Type
Prescription Drug
How many have tried
5
Tried for
fatigue (5)
Treatment name(s)

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

(Vistaril)
Perceived effectiveness
for interstitial cystitis (7 evaluations)
Side effects
drowsiness dry mouth 2 more
Total evaluations
7
Tried for
interstitial cystitis (12) anxious mood (2)
Treatment name(s)

(Elmiron)
Perceived effectiveness
for interstitial cystitis (6 evaluations)
Side effects
dry mouth hair loss 1 more
Total evaluations
6
Tried for
interstitial cystitis (12)
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 (6) pain (4)
1 more
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (7 evaluations)
Side effects
anxious mood confusion 2 more
Total evaluations
8
Tried for
pain (9) interstitial cystitis (1)
Treatment name(s)

(Pyridium)
Perceived effectiveness
for interstitial cystitis (6 evaluations)
Side effects
nausea if taken on empty stomach
Total evaluations
4
Tried for
interstitial cystitis (7)
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)

(Ultram)
Perceived effectiveness
for pain (1 evaluation)
Side effects
constipation drowsiness 1 more
Total evaluations
1
Tried for
pain (5) interstitial cystitis (2)
Treatment name(s)

(Adderall)
Perceived effectiveness
for fatigue (7 evaluations)
Side effects
aggressive behavior dermatillomania 3 more
Total evaluations
7
Tried for
fatigue (5)
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)
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 1
20s 85
30s 248
40s 377
50s 395
60s 197
70+ 49
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 141
20-29 years 181
30-39 years 159
40-49 years 134
50-59 years 49
60-69 years 13
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 53
Female 1303

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 816
Not Diagnosed 47

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