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 for endometriosis

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

(Lo Loestrin FE)
Type
Prescription Drug
How many have tried
216
Tried for
endometriosis (2)
Treatment name(s)

(Abdominal hysterectomy)
Type
Surgery
How many have tried
298
Tried for
endometriosis (2)
Treatment name(s)

(Apri)
Type
Prescription Drug
How many have tried
73
Tried for
endometriosis (1)

Data from patients with endometriosis, who have ever reported treatments, ordered by their reporting frequency during 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)

(Lo Loestrin FE)
Perceived effectiveness
for endometriosis (1 evaluation)
Side effects
fluid retention (edema) pain in breast 1 more
Total evaluations
1
Tried for
endometriosis (2)
Treatment name(s)

(Abdominal hysterectomy)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
endometriosis (2)
Treatment name(s)

(Apri)
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
endometriosis (1)
  • Major
  • Moderate
  • Slight
  • None
  • Can't tell
  • Severe
  • Moderate
  • Mild
  • None

Data from patients with endometriosis, who have ever reported treatments, ordered by their reporting frequency during the last 5 years.
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Who has endometriosis on PatientsLikeMe?

  • 10 new patients joined this month
  • 699 say endometriosis is their primary condition

Age
Age Proportion # of patients
<20 2
20s 200
30s 604
40s 783
50s 489
60s 122
70+ 26
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 721
20-29 years 363
30-39 years 136
40-49 years 36
50-59 years 4
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 16
Female 2233

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1673
Not Diagnosed 115

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