Endometriosis

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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, insomnia, fatigue, and pain) regardless of condition.
Last updated:

Treatments taken by people with endometriosis

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

(Advil)
Type
Over the Counter Drug
How many have tried
25
Tried for
endometriosis (21) Pain (11)
Treatment name(s)

(Abdominal hysterectomy)
Type
Surgery
How many have tried
24
Tried for
endometriosis (23) Pain (2)
Treatment name(s)

(Naprosyn)
Type
Prescription Drug
How many have tried
24
Tried for
endometriosis (18) Pain (16)
Treatment name(s)

(Elavil)
Type
Prescription Drug
How many have tried
22
Tried for
Insomnia (17) Pain (10)
2 more
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
17
Tried for
Pain (17) endometriosis (2)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
16
Tried for
Pain (14) endometriosis (2)
Treatment name(s)

(Desyrel)
Type
Prescription Drug
How many have tried
14
Tried for
Insomnia (13) Anxious mood (1)
1 more
Treatment name(s)

(Klonopin)
Type
Prescription Drug
How many have tried
13
Tried for
Anxious mood (13) Insomnia (2)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
13
Tried for
Pain (13)
Treatment name(s)

(Cymbalta)
Type
Prescription Drug
How many have tried
12
Tried for
Depressed mood (10) endometriosis (1)
1 more

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)

(Advil)
Perceived effectiveness
for endometriosis (6 evaluations)
Side effects
Nausea Burning in stomach 3 more
Total evaluations
11
Tried for
endometriosis (21) Pain (11)
Treatment name(s)

(Abdominal hysterectomy)
Perceived effectiveness
for endometriosis (9 evaluations)
Side effects
Hospitalization abdominal adhesions 5 more
Total evaluations
9
Tried for
endometriosis (23) Pain (2)
Treatment name(s)

(Naprosyn)
Perceived effectiveness
for endometriosis (6 evaluations)
Side effects
Diarrhea gastric ulcer 5 more
Total evaluations
11
Tried for
endometriosis (18) Pain (16)
Treatment name(s)

(Elavil)
Perceived effectiveness
for Insomnia (13 evaluations)
Side effects
Dry mouth Dizziness 10 more
Total evaluations
16
Tried for
Insomnia (17) Pain (10)
2 more
Treatment name(s)

(Ultram)
Perceived effectiveness
for Pain (5 evaluations)
Side effects
Nausea Chronic constipation 6 more
Total evaluations
5
Tried for
Pain (17) endometriosis (2)
Treatment name(s)

(Norco)
Perceived effectiveness
for Pain (5 evaluations)
Side effects
Chronic constipation Dizziness and feeling faint 3 more
Total evaluations
5
Tried for
Pain (14) endometriosis (2)
Treatment name(s)

(Desyrel)
Perceived effectiveness
for Insomnia (3 evaluations)
Side effects
Dizziness Racing thoughts 1 more
Total evaluations
4
Tried for
Insomnia (13) Anxious mood (1)
1 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for Anxious mood (11 evaluations)
Side effects
Sedation Drowsiness 1 more
Total evaluations
12
Tried for
Anxious mood (13) Insomnia (2)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for Pain (5 evaluations)
Side effects
Balance problems Brain fog 9 more
Total evaluations
6
Tried for
Pain (13)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for Depressed mood (8 evaluations)
Side effects
Anxious mood Decreased sex drive (libido) 7 more
Total evaluations
11
Tried for
Depressed mood (10) endometriosis (1)
1 more
  • 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 7
20s 214
30s 533
40s 566
50s 206
60s 53
70+ 10
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 629
20-29 years 330
30-39 years 120
40-49 years 32
50-59 years 3
60-69 years 0
70+ years 0

Sex

Distribution of sex

100% Female
0% Male

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,312
Not Diagnosed 65

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