Endless POFibilities -- December 1999

POF QUESTIONNAIRE RESULTS FOR SECTIONS A - C6

376 were mailed as part of the 3/99 newsletter. 4 were returned as "address unknown." The questionnaire was (still is!) available by mail and on the IPOFA WebSite. We’ve received 90 completed questionnaires. From the results we gathered from the 6 women who completed the questionnaire via the IPOFA conference we updated the questionnaire for the 3/99 newsletter. The women who responded through the conference did not have all the questions as the subsequent questionnaire. Additionally, you will note that some answers add up to more than 90. There were multiple answers to individual questions and some answers have less than 90 responses. Either they didn’t apply or they were skipped. One respondent answered only Sections A-C. Also, please note that the answers to the questionnaire do not necessarily reflect ALL women with POF. Completing a questionnaire is self-selection – i.e. – 20 women completed the questionnaire after printing it from the WebSite. Not everyone has access to a computer.

Section A - Background

A1.) You obtained the questionnaire

At IPOFA conference – 6
On IPOFA WebSite – 20
Through the mail – 63 (17% response rate)
Other – (support group meeting) – 1

A3.) Where were you born?

USA – 82 Canada – 2
Finland – 1 Jamaica – 1
So. Africa – 1 Germany – 1
Australia – 1 Puerto Rico – 1

A4.) Race /ethnicity

African/American – 3
Caucasian –79
Hispanic – 1
Native American – 1
Other – 3 (Lebanese – 1, German – 1)

A8a.) Current Marital Status

Single - 13
Engaged - 1
Married/partnered - 60
Separated from spouse/partner- 5
Divorced from spouse/partner- 7
Widowed - 1

A8c.) Did you receive your POF diagnosis before or after you married/partnered?

Before – 13 (2 indicated they received
their diagnosis 3 months before their wedding)
After – 57

Section B – Menstrual history

B1.) Did you ever have a period?

Yes - 80
No – 4

B3.) How old were you when you had your first period?

Ranged in age from 9 (1) to 17 (2) with the most common ages 12 and 13 with 20 respondents to each.

B4.) Were your menstrual cycles regular right from the start?

Yes - 56
No - 20

B6.) How old were you when you stopped having periods?

Answers ranged in age from 15 – 37 years old. There wasn’t a most common age. Generally there was 1 respondent for each teenage year and 1, 2 or 3 respondents for each age 20 – 37. For girls with primary amenorrhea (they never had a period, except with HRT, they did not answer this question). 9 women indicated that they continued to have 1- 2 periods/year (called prodrome of POF).

Section C - POF

C1.) Have you been diagnosed with POF?

Yes, definitely diagnosed - 83
Suspected - 2

C2.) Who made the diagnosis?

Gynecologist – 47
Reproductive Endocrinologist – 45
Other – 5

C3.) What was your age when you were diagnosed with POF?

Answers ranged in age from 16 – 42 years old. There wasn’t a most common age. Generally there was 1 respondent for each teenage year and early 40’s and 1, 2 or 3 respondents for each age 20 – 39.

C4.) Did you suspect a problem before you were diagnosed?

Yes – 69
No - 15

C5.) If yes, why did you suspect problem?

Symptoms - 29
Periods stopped - 20
Irregular periods - 19
Infertility - 5
Never had a period - 2
Family history – 2
Other - 2

C6.) From the time you suspected a problem to the time you were diagnosed the amount of time was?

Range was from 1 month to 10 years. Majority took 2 years for diagnosis. Additionally, one person took 17 years for diagnosis.