Interstitial cystitis

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

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.
Last updated:

Treatments taken by people for interstitial cystitis

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

(Vistaril)
Type
Prescription Drug
How many have tried
234
Tried for
interstitial cystitis (3)

Data from patients with interstitial cystitis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

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 (1 evaluation)
Side effects
excessive daytime sleepiness (somnolence)
Total evaluations
1
Tried for
interstitial cystitis (3)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with interstitial cystitis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
Last updated:

Who has interstitial cystitis on PatientsLikeMe?

  • 4 new patients joined this month
  • 533 say interstitial cystitis is their primary condition

Age
Age Proportion # of patients
<20 0
20s 54
30s 236
40s 367
50s 421
60s 295
70+ 107
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 145
20-29 years 184
30-39 years 167
40-49 years 132
50-59 years 51
60-69 years 16
70+ years 1

Distribution of sex

Sex
Sex Proportion # of patients
Male 63
Female 1423

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 836
Not Diagnosed 48

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