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.

How do members experience primary amenorrhea?

Top 5 symptoms reported by people with primary amenorrhea*

*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.

Top treatments taken by people for primary amenorrhea*

Who has primary amenorrhea on PatientsLikeMe?

Age

Age Proportion # of patients
<20 0
20s 8
30s 19
40s 14
50s 7
60s 3
70+ 1

Distribution of sex

Sex

Sex Proportion # of patients
Male 2
Female 48

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 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 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?

  • 1 new patients joined this month
  • 21 say primary amenorrhea is their primary condition

Age
Age Proportion # of patients
<20 0
20s 8
30s 19
40s 14
50s 7
60s 3
70+ 1
Age at first symptom
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
Sex Proportion # of patients
Male 2
Female 48

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 22
Not Diagnosed 6

These charts show data from primary amenorrhea patients who have completed their condition history
Last updated: