Primary amenorrhea
We’re all in this for good.
- 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 primary amenorrhea?
Primary amenorrhea is the failure of menstruation to occur by the age of 16 or 2 yr after the onset of puberty or by about age 14 in girls who have not yet gone through puberty. Treatments vary based on the underlying condition.
Common symptoms reported by people with primary amenorrhea
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.
Last updated:
Treatments taken by people with primary amenorrhea
Treatment name(s)
Type
How many have tried
Tried for
Data from patients with primary amenorrhea, who reported starting treatments within the last 5 years.
Last updated:
Compare treatments taken by people with primary amenorrhea
Treatment name(s)
Perceived effectiveness
Side effects
Total evaluations
Tried for
Treatment name(s)
Debridement
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
Perceived effectiveness
for depressed mood (1 evaluation)
Total evaluations
1
Tried for
depressed mood
(1)
Treatment name(s)
Lateral Release
Perceived effectiveness
No evaluations
Side effects
No evaluations
Total evaluations
0
Tried for
pain
(1)
- Major
- Moderate
- Slight
- None
- Can't tell
- Severe
- Moderate
- Mild
- None
Data from patients with primary amenorrhea, who reported starting treatments within the last 5 years.
Last updated:
Who has primary amenorrhea on PatientsLikeMe?
- 36 patients have this condition
- 0 new patients joined this month
- 11 say primary amenorrhea is their primary condition
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 0 | |
| 20s | 6 | |
| 30s | 16 | |
| 40s | 7 | |
| 50s | 3 | |
| 60s | 2 | |
| 70+ | 0 |
| Age at first symptom | Proportion | # of patients |
|---|---|---|
| 0-19 years | 10 | |
| 20-29 years | 3 | |
| 30-39 years | 5 | |
| 40-49 years | 1 | |
| 50-59 years | 0 | |
| 60-69 years | 0 | |
| 70+ years | 0 |
Distribution of sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 2 | |
| Female | 31 |
| Diagnosis status | Proportion | # of patients |
|---|---|---|
| Diagnosed | 20 | |
| Not Diagnosed | 5 |
These charts show data from primary amenorrhea patients who have completed their condition history
Last updated: