One, Five, and Ten Years After the Operation

Patient ID:______

Questionnaire for women who have had a hysterectomy

One, five, and ten years after the operation.

How to answer the questionnaire. 2

Before answering please read the entire question, including the text as well as the possible answering categories.

Most questions should be answered by putting a ring around the number that belongs to the answer you have chosen.

Example:

1) In general, would you say that your health is:

Put one ring

Excellent 1 Very good 2 Good 3 Fair 4 Poor 5

For other questions rings should be put around numbers in a table.

Example: 4) During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?

Put a ring in each line

Yes No

Cut down on the amount of time you spent on work or other activities 1 2

Accomplished less than you would like 1 2

Were limited in the kind of work or other activities 1 2

Had difficulties performing the work or other activities (for example, it took extra 1 2 effort)

Please return the filled out questionnaire in the enclosed envolope within ten days. The letter is post free.

If you wish to withdraw from the trial and therefore do not wish to answer the questionnaire, please put a ring on the last page of the questionnaire and return the questionnaire anyway. This way you avoid receiving a reminder in three weeks.

Thank you for your help.

The first part of the questionnaire is about your own perception of your health. 3

1. In general, would you say that your health is:

Put one ring

Excellent 1 Very good 2 Good 3 Fair 4 Poor 5 ______

2. Compared to one year ago, how would you rate your health in general now?

Put one ring

Much better now 1 Somewhat better now 2 About the same 3 Somewhat worse now 4 Much worse now 5 ______

3. The following questions are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?

Put one ring in each line

Yes, Yes, limited a No, not limited a lot little limited at all Vigorous activities, such as running, lifting heavy objects, 1 2 3 participating in strenuous sports Moderate activities, such as moving a table, pushing a vacuum 1 2 3 cleaner, bowling, or playing golf Lifting or carrying groceries 1 2 3

Climbing several flights of stairs 1 2 3 Climbing one flight of stairs 1 2 3 Bending, kneeling or stooping 1 2 3 Walking more than a mile 1 2 3 Walking several blocks 1 2 3 Walking one block 1 2 3 Bathing or dressing yourself 1 2 3

______

4. During the past 4 weeks, have you had any of the following problems with your work or other regular activities as a result of your physical health?

Put one ring in each line 5

Yes No Cut down on the amount of time you spent on work or other 1 2 activities Accomplished less than you would like 1 2 Were limited in the kind of work or other activities 1 2 Had difficulties performing the work or other activities (for 1 2 example, it took extra effort)

______

5. During the past 4 weeks, have you had any of the following problems with your work or other regular activities as a result of any emotional problems (such as feeling depressed or anxious)?

Yes No Cut down on the amount of time you spent on work or other 1 2 activities Accomplished less than you would like 1 2 Didn't do work or other activities as carefully as usual 1 2

______

6. During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups?

Put one ring

Not at all 1 Slightly 2 6

Moderately 3 Quite a bit 4 Extremely 5 ______

7. How much bodily pain have you had during the past 4 weeks?

Put one ring

None 1 Very mild 2 Mild 3 Moderate 4 Severe 5 Very severe 6 ______

8. During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the house and housework)?

Put one ring

Not at all 1 A little bit 2 Moderately 3 Quite a bit 4 Extremely 5 ______

9. These questions are about how you feel and how things have been with you during the past 4 weeks. For each question, please give the one answer that comes closest to the way you have been feeling.

How much of the time during the past 4 weeks……

Put one ring in each line 7

All of Most A good Some A little None of the of the bit of of the of the the time time time the time time time Did you feel full of pep? 1 2 3 4 5 6 Have you been a very 1 2 3 4 5 6 nervous person? Have you felt so down in the dumps that nothing 1 2 3 4 5 6 could cheer you up? Have you felt calm and peaceful? 1 2 3 4 5 6 Did you have a lot of 1 2 3 4 5 6 energy? Have you felt downhearted 1 2 3 4 5 6 and blue? Did you feel worn out? 1 2 3 4 5 6 Have you been a happy 1 2 3 4 5 6 person? Did you feel tired? 1 2 3 4 5 6 ______

10. During the past 4 weeks, how much of the time has your physical health or your emotional problems interfered with your social activities (like visiting friends, relatives, etc.)?

Put one ring

All the time 1 Most of the time 2 Some of the time 3 A little of the time 4 None of the time 5 8

______

11. How TRUE or FALSE is each of the following statements for you?

Definitely Mostly Don't Mostly Definitely true true know false false I seem to get sick a little easier than other people 1 2 3 4 5 I am as healthy as anybody I know 1 2 3 4 5 I expect my health to get worse 1 2 3 4 5 My health is excellent 1 2 3 4 5

______

The nex questions are about pelvic pain.

12. During the past 4 weeks, have you suffered from pelvic pain?

Put one ring

Yes 1 No 2 ______

13. During the past 4 weeks, has one or more of the following situations given rise to your pelvic pain? Put one or more rings

Menstrual period 1 Intercourse 1 Physical activities 1 Other______1 I don't suffer from pelvic pain 1 ______9

14. During the past 4 weeks, has one or more of the following situations increased your pelvic pain?

Put one or more rings

Menstrual period 1 Intercourse 1 Physical activities 1 Other______1 I don't suffer from pelvic pain 1 ______

15. Does pelvic pain interfere with your daily activities?

Put one ring

Yes 1 No 2 I don't know 3 ______

16. After the operation, has your pelvic pain changed?

Put one ring

Yes, it has disappeared 1 Yes, it has decreased 2 No, it is unchanged 3 Yes, it has increased 4 ______

The questions in the next paragraph are about menopause.

17. Do you think that you have passed menopause?

Put one ring

Yes 1 No 2 I don't know 3 ______10

18. During the past 12 months, have you been bothered by one or more of the following symptoms?

Dryness of the vagina 1 Hot flushes 1 Nightly flushes 1 Mood swings 1 Experience difficulty focusing 1 None of the above 1 I don't know 1 ______

19. Do you take HRT or birth control pills? Also put a ring around "Yes", if you use hormone plaster, hormone gel, hormone crème, or hormone vagitories.

Put one ring

Yes 1 No 2 ______

20. Please, write the name of your hormone therapy? Please, also write the name, if it is hormone plaster, hormone gel, hormone creme, hormone vagitories or birth control pills.

______

Here are some questions about vaginal bleeding.

If you have had a total hysterectomy, you are not supposed to answer the questions in the following paragraph. Please go to the questions on urinary function from question number 24 on page 12. ______

Some women, who have had a subtotal hysterectomy, still experience vaginal bleeding after the operation. The vaginal bleeding might be regular like menstrual periods or irregular, or they might be like spottings. The vaginal bleeding is considered regular, when the number of days from the first day of one 11 bleeding to the first day of the next only varies 3-4 days. The number of days between two bleedings might exceed one month.

21. During the past year, how did you usually experience the timing of your vaginal bleeding?

Put one ring

It was regular 1 It was irregular 2 Sometimes regular, sometimes irregular 3 I did not have vaginal bleeding 4 I don't know 5 ______

22. During the past year, how did you usually experience the quality of your vaginal bleeding?

Put one ring

Very heavy 1 Heavy 2 Normal 3 Weak 4 Very weak 5 I did not have vaginal bleeding 6 ______

23. During the past year, to what extent has your vaginal bleeding interfered with your work (at home or outside of home)?

Put one ring

Extremely 1 Quite a bit 2 Moderately 3 Slightly 4 Not at all 5 ______

The questions in the next paragraph are about your urinary function. 12

Through the questions in the next paragraph we are interested in how things usually are with you.

24. During 24 hours, how many times do you usually have to pass water?

Put one ring

1 - 3 times 1 4 - 10 times 2 More than 10 times 3 ______

25. At night, do you have to get out of bed to pass water?

Put one ring

Yes 1 No 2 ______

26. At night, how many times do you have to pass water?

Put one ring

0-2 times per night 1 More than twice per night 2 Not every night 3 Never 4 ______

27. Do you experience pain passing the water?

Put one ring

Yes 1 No 2 ______

28. Please, describe your passing the water?

Put one ring

Extreme 1 Quite a bit 2 Moderate 3 13

Slight 4 No pain at all 5 ______

29. During the past year, how often did you experience urinary tract infection?

Put one ring

All the time 1 Often 2 Every now and then 3 Rare 4 Never 5 ______

30. Do you have the feeling of incomplete bladder emptying, while passing the water?

Put one ring

Never 1 Rare 2 Often 3 Always 4 ______

31. Do you have to strain to pass water?

Put one ring

Never 1 Rare 2 Often 3 Always 4 ______

32. Please, describe the quality of your stream when passing the water?

Put one ring

Heavy 1 Normal 2 14

Poor 3 ______

33. Do you have to do something special to empty your bladder?

Put one ring

Yes, I sometimes/always use a katheter 1 Yes, I do double/triple voiding 2 No 3 Other______4 ______

34. Does urinary incontinence usually interfere with your daily life?

Put one ring

Always 1 Often 2 Rare 3 Never 4 ______

35. In which situations do you usually experience urinary incontinence?

Always 1 During intercourse 1 During urge to pass the urine 1 During cough, sneeze or laughter 1 Sport or other physical activity 1 Never 1 ______

36. During the past year, did you experience descensus or prolapse of your bladder?

Put one ring

Yes 1 15

No 2 ______

37. If you have had a total hysterectomy, did you experience descensus or prolapse/drag of your vagina during the past year?

Put one ring

Yes 1 No 2 a. If you have had a subtotal hysterectomy, did you experience descensus or prolapse/drag of your uterine cervix during the past year?

Put one ring

Yes 1 No 2 ______

38. Does your urinary function interfere with your daily life?

Put one ring

Yes, it is a big problem 1 Yes, it is a problem 2 Yes, but it is only a minor problem 3 No, it is no problem 4 ______

The next questions are about your bowel function.

39. How often do you usually open your bowels?

Put one ring 16

Twice or more a day 1 Once a day 2 Every 2.- 3. day 3 Once a week or less 4 ______

40. Do you need to use laxatives to open your bowels?

Put one ring

Yes 1 No 2 ______

41. Please, describe the consistency of your stools?

Put one ring

Thin 1 Normal 2 Hard 3 ______

42. Do you usually or often experience incontinence of flatus?

Put one ring

Yes 1 No 2 ______

43. Do you usually or often experience incontinence of stool?

Put one ring

Yes 1 No 2 ______

44. Do you experience pain when opening your bowels?

Put one ring

Yes 1 No 2 ______

45. Does your bowel function interfere with your daily life?

Put one ring

Yes, it is a big problem 1 Yes, it is a problem 2 Yes, but it is only a minor problem 3 No, it is no problem 4 ______

46. During the past year, have you experienced descensus or prolapse of your bowel through your vagina?

Put one ring

Yes 1 No 2 ______

Now some questions about your partner.

47. Do you have a partner?

Put one ring

Yes 1 No 2 ______

48. For how long time have you had your partner?

Write the number of months or years.

______years______months ______18

49. How is the relationship to your partner?

Put one ring

Excellent 1 Good 2 Fair 3 Poor 4 I don't know 5 I don't have a partner 6 ______

The next questions are about your sexual life.

For many different reasons women experience varying degree of desire for sex and intercourse. Through the next pages we would like to know how things have been with you during the past year.

50. Do you experience pain during intercourse?

Put one ring

Yes 1 No 2 ______

51. Where do you feel the pain during intercourse?

Put one or more rings 19

At the entrance of the vagina 1 Deep in the vagina 1 At the perineum 1 Other______1 I don't experience pain during intercourse 1 ______

52. How often do you desire sex?

Put one ring

Almost never 1 Less than once a month 2 2-4 times a month 3 1-2 times a week 4 More than twice a week 5 ______

53. How often do you have intercourse?

Put one ring

Almost never 1 Less than once a month 2 2-4 times a month 3 1-2 times a week 4 More than twice a week 5 ______

Women achieve sexual satisfaction (orgasm) in many different ways. Some achieve sexual satisfaction (orgasm) through self-satisfaction (masturbation), some through intercourse and others through both acts.

______

54. How often do you satisfy yourself (masturbate)?

Put one ring 20

Never 1 Less than once a year 2 Less than once a month 3 2-4 times a month 4 1-2 times a week 5 More than twice a week 6 ______

55. Do you achieve sexual satisfaction (orgasm) during intercourse?

Put one ring

Never 1 Rare 2 Often 3 Always 4

a) If you achieve satisfaction (orgasm), how does it happen?

By stimulating the clitoris 1 By deep penetration of the penis 1 Other______1 ______

56. Please describe the quality of your satisfaction (orgasm)?

Put one ring

Excellent 1 Good 2 Fair 3 I don't achieve satisfaction 4 ______

57. Are you satisfied with your sexual life?

Put one ring 21

Finally, some questions about your health and your work.

58. How much do you weigh?

______kg ______

59. Have you paid a visit to your doctor's during the past year?

Put one ring

60. What was the reason for visiting your doctor? Please write.

______

61. During the past year, have you been admitted to the hospital?

Put one ring

Yes 1 No 2 22

______

62. What was the reason for your hospital stay? Please write.

______

63. Do you take any kind of medicine daily or weekly?

Put one ring

Yes 1 No 2 ______

64. What kind of medicine do you take? Please write. Also write the name if the medicine is HRT.

______

65. Has your work changed during the past year?

Put one ring

Yes, I am working outside of home 1 Yes, I am working at home 2 Yes, I am on leave 3 Yes, I am unemployed 4 Yes, I have retired 5 No 6 Other______7 ______

66. Do you know something about the operation now that you would have liked to know before the operation? Please write. 23

______

Thank you for answering the questionnaire.

If you wish to make comments about questions or about the entire trial, please write them here: 24

I want to withdraw from the trial 1

Reasons for withdrawal:

I want to withdraw on a question of principle 1 I want to withdraw because of disease 2 Other (please write):______3

Drawing on the front page by Ingeborg Gimbel.