Chronic pelvic pain syndrome

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 chronic pelvic pain syndrome?

Chronic pelvic pain is pain to the area below the belly button encompassing the sex organs. The cause of the pain is varied and can be related to injury to the nerves and muscles in the area or related to underlying conditions such as endometriosis, ovarian cysts, urinary tract infections, etc.

Common symptoms reported by people with chronic pelvic pain syndrome

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.
Last updated:

Treatments taken by people with chronic pelvic pain syndrome

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

(Neurontin)
Type
Prescription Drug
How many have tried
4
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
3
Treatment name(s)

(Tylenol)
Type
Over the Counter Drug
How many have tried
2
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
2
Treatment name(s)

(Marijuana)
Type
Other
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Tylenol with Codeine #3)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Valium)
Type
Prescription Drug
How many have tried
2
Tried for
anxious mood (2)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
2
Tried for
pain (2)
Treatment name(s)

(Provigil)
Type
Prescription Drug
How many have tried
2
Tried for
fatigue (2)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Type
Procedures
How many have tried
2

Data from patients with chronic pelvic pain syndrome, who reported starting treatments within the last 5 years.
Last updated:

Compare treatments taken by people with chronic pelvic pain syndrome

Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (2 evaluations)
Side effects
drowsiness
Total evaluations
1
Treatment name(s)

(Norco)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Treatment name(s)

(Tylenol)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Treatment name(s)

(Elavil)
Perceived effectiveness
for chronic pelvic pain syndrome (1 evaluation)
Side effects
dizziness dry mouth 2 more
Total evaluations
2
Treatment name(s)

(Marijuana)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Tylenol with Codeine #3)
Perceived effectiveness
for pain (2 evaluations)
Side effects
constipation
Total evaluations
2
Tried for
pain (2)
Treatment name(s)

(Valium)
Perceived effectiveness
for anxious mood (3 evaluations)
Side effects
tiredness
Total evaluations
3
Tried for
anxious mood (2)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain (2)
Treatment name(s)

(Provigil)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
fatigue (2)
Treatment name(s)

(TENS Transcutaneous Electrical Nerve Stimulation)
Perceived effectiveness
for chronic pelvic pain syndrome (1 evaluation)
Side effects
Total evaluations
1
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with chronic pelvic pain syndrome, who reported starting treatments within the last 5 years.
Last updated:

Who has chronic pelvic pain syndrome on PatientsLikeMe?


Age
Age Proportion # of patients
<20 0
20s 17
30s 52
40s 58
50s 62
60s 22
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 20
20-29 years 28
30-39 years 29
40-49 years 17
50-59 years 10
60-69 years 3
70+ years 0

Sex

Distribution of sex

74% Female
26% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 104
Not Diagnosed 32

These charts show data from chronic pelvic pain syndrome patients who have completed their condition history
Last updated: