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
Treatments taken by people for primary amenorrhea

Let’s build this page together! When you share what it’s like to have primary amenorrhea through your profile, those stories and data appear here too.
Got a question about living with primary amenorrhea? Members in the forum might have the answers.
Compare treatments taken by people with primary amenorrhea

Let’s build this page together! When you share what it’s like to have primary amenorrhea through your profile, those stories and data appear here too.
Got a question about living with primary amenorrhea? Members in the forum might have the answers.
Who has primary amenorrhea on PatientsLikeMe?
- 0 new patients joined this month
- 16 say primary amenorrhea is their primary condition
Age | Proportion | # of patients |
---|---|---|
<20 | 2 | |
20s | 5 | |
30s | 15 | |
40s | 12 | |
50s | 5 | |
60s | 2 | |
70+ | 0 |
Age at first symptom | Proportion | # of patients |
---|---|---|
0-19 years | 12 | |
20-29 years | 4 | |
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 | 38 |
Diagnosis status | Proportion | # of patients |
---|---|---|
Diagnosed | 22 | |
Not Diagnosed | 6 |