Endometriosis

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 endometriosis?

Endometriosis is a condition in which the tissue that behaves like the cells lining the uterus (endometrium) grows in other areas of the body. The tissue growth typically occurs in the pelvic area, outside of the uterus, on the ovaries, bowel, rectum, bladder, and the delicate lining of the pelvis.

Common symptoms reported by people with endometriosis

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 endometriosis

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

(Ibuprofen Prescription)
Type
Over the Counter Drug
How many have tried
19
Tried for
endometriosis (14) pain (8)
Treatment name(s)

(Naproxen Prescription)
Type
Over the Counter Drug
How many have tried
17
Tried for
endometriosis (11) pain (10)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
15
Tried for
pain (15)
Treatment name(s)

(Radical hysterectomy)
Type
Surgery
How many have tried
15
Tried for
endometriosis (14) pain (2)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
14
Tried for
pain (14) endometriosis (1)
Treatment name(s)

(Zoloft)
Type
Prescription Drug
How many have tried
12
Tried for
depressed mood (11) fatigue (1)
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
11
Tried for
anxious mood (11)
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
11
Tried for
pain (10) endometriosis (1)
Treatment name(s)

(Loestrin 24 Fe)
Type
Prescription Drug
How many have tried
10
Tried for
endometriosis (10)
Treatment name(s)

(Mirena)
Type
Prescription Drug
How many have tried
10
Tried for
endometriosis (10)

Data from patients with endometriosis, who reported starting treatments within the last 5 years.
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Compare treatments taken by people with endometriosis

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

(Ibuprofen Prescription)
Perceived effectiveness
for endometriosis (5 evaluations)
Side effects
nausea dizziness with nausea 1 more
Total evaluations
7
Tried for
endometriosis (14) pain (8)
Treatment name(s)

(Naproxen Prescription)
Perceived effectiveness
for endometriosis (1 evaluation)
Side effects
irritability nausea
Total evaluations
6
Tried for
endometriosis (11) pain (10)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (7 evaluations)
Side effects
burning sensation confusion 5 more
Total evaluations
8
Tried for
pain (15)
Treatment name(s)

(Radical hysterectomy)
Perceived effectiveness
for endometriosis (2 evaluations)
Side effects
Hospitalization
Total evaluations
2
Tried for
endometriosis (14) pain (2)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (3 evaluations)
Side effects
chronic constipation excessive dry mouth 3 more
Total evaluations
3
Tried for
pain (14) endometriosis (1)
Treatment name(s)

(Zoloft)
Perceived effectiveness
for depressed mood (6 evaluations)
Side effects
drowsiness mood swings
Total evaluations
6
Tried for
depressed mood (11) fatigue (1)
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (12 evaluations)
Side effects
sedation drowsiness
Total evaluations
16
Tried for
anxious mood (11)
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (5 evaluations)
Side effects
constipation drowsiness 2 more
Total evaluations
5
Tried for
pain (10) endometriosis (1)
Treatment name(s)

(Loestrin 24 Fe)
Perceived effectiveness
for endometriosis (6 evaluations)
Side effects
anger breast soreness 5 more
Total evaluations
6
Tried for
endometriosis (10)
Treatment name(s)

(Mirena)
Perceived effectiveness
for endometriosis (6 evaluations)
Side effects
pain absence of menstruation (amenorrhea) 10 more
Total evaluations
6
Tried for
endometriosis (10)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with endometriosis, who reported starting treatments within the last 5 years.
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Who has endometriosis on PatientsLikeMe?


Age
Age Proportion # of patients
<20 15
20s 234
30s 620
40s 683
50s 285
60s 73
70+ 13
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 688
20-29 years 351
30-39 years 131
40-49 years 33
50-59 years 3
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 12
Female 1925

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1543
Not Diagnosed 89

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