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, 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)

(Radical 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
19
Tried for
endometriosis (15) pain (13)
Treatment name(s)

(Neurontin)
Type
Prescription Drug
How many have tried
17
Tried for
pain (17)
Treatment name(s)

(Advil)
Type
Over the Counter Drug
How many have tried
16
Tried for
endometriosis (13) pain (6)
Treatment name(s)

(Ultram)
Type
Prescription Drug
How many have tried
15
Tried for
pain (15) endometriosis (2)
Treatment name(s)

(Norco)
Type
Prescription Drug
How many have tried
14
Tried for
pain (12) endometriosis (2)
Treatment name(s)

(Zoloft)
Type
Prescription Drug
How many have tried
12
Tried for
depressed mood (10) anxious mood (1)
1 more
Treatment name(s)

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

(Cymbalta)
Type
Prescription Drug
How many have tried
11
Tried for
depressed mood (9) endometriosis (1)
1 more
Treatment name(s)

(Flexeril)
Type
Prescription Drug
How many have tried
10
Tried for
pain (9) endometriosis (1)

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)

(Radical hysterectomy)
Perceived effectiveness
for endometriosis (8 evaluations)
Side effects
Hospitalization abdominal adhesions 5 more
Total evaluations
8
Tried for
endometriosis (23) pain (2)
Treatment name(s)

(Naprosyn)
Perceived effectiveness
for endometriosis (4 evaluations)
Side effects
gastric ulcer heart palpitations 2 more
Total evaluations
9
Tried for
endometriosis (15) pain (13)
Treatment name(s)

(Neurontin)
Perceived effectiveness
for pain (7 evaluations)
Side effects
burning sensation confusion 6 more
Total evaluations
8
Tried for
pain (17)
Treatment name(s)

(Advil)
Perceived effectiveness
for endometriosis (5 evaluations)
Side effects
nausea dizziness with nausea 1 more
Total evaluations
8
Tried for
endometriosis (13) pain (6)
Treatment name(s)

(Ultram)
Perceived effectiveness
for pain (4 evaluations)
Side effects
chronic constipation cold sweat 6 more
Total evaluations
4
Tried for
pain (15) endometriosis (2)
Treatment name(s)

(Norco)
Perceived effectiveness
for pain (8 evaluations)
Side effects
chronic constipation drowsiness 1 more
Total evaluations
8
Tried for
pain (12) endometriosis (2)
Treatment name(s)

(Zoloft)
Perceived effectiveness
for depressed mood (5 evaluations)
Side effects
mood swings
Total evaluations
6
Tried for
depressed mood (10) anxious mood (1)
1 more
Treatment name(s)

(Klonopin)
Perceived effectiveness
for anxious mood (11 evaluations)
Side effects
sedation drowsiness
Total evaluations
13
Tried for
anxious mood (11)
Treatment name(s)

(Cymbalta)
Perceived effectiveness
for depressed mood (3 evaluations)
Side effects
anxious mood dizziness 5 more
Total evaluations
6
Tried for
depressed mood (9) endometriosis (1)
1 more
Treatment name(s)

(Flexeril)
Perceived effectiveness
for pain (6 evaluations)
Side effects
drowsiness constipation 2 more
Total evaluations
6
Tried for
pain (9) endometriosis (1)
  • 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 9
20s 233
30s 573
40s 631
50s 259
60s 64
70+ 11
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 661
20-29 years 344
30-39 years 127
40-49 years 33
50-59 years 3
60-69 years 1
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 10
Female 1,782

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 1,454
Not Diagnosed 77

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