1. Women and bleeding Dr. Nita Radhakrishnan Sir Ganga Ram Hospital,
New Delhi, India
Annual Meet WG HFI
6 Dec 2014

2. Woman Challenges in the life of a woman
Many
Hemostatic challenges in the life of a woman
Menstruation (Menorrhagia = Heavy menstrual bleeding)
Pregnancy
Childbirth

3. Bleeding disorders in women
Hemophilia A, B carrier state Von Willebrand disease Rare bleeding disorders Inherited platelet disorders

4. What has history taught us?

5. Royal disease Queen Victoria Had no ancestors with hemophilia
9 children
Disease appeared in her 8th child Leopold who was “very delicate”
“We must have some strong blood”
Spread to the royal family of England
Spread to German, Russian and Spanish royal families

7. Von Willebrand disease
Most common bleeding disorder
1% of the population
Eric von Willebrand
Index case: 5 year old died eight years later following menstrual bleeding
23 affected family members
Her grandmother died following delivery

8. Why is bleeding more in women in VWD?
More hemostatic challenges in a woman

9. Menstrual Cycle is a Vital Sign
American College of Obstetricians and Gynecologists
American Academy of Pediatrics
Normal menstruation
Begins at 11 to 14 years of age
Normal interval is is 21 to 45 days
Normal length of menstrual flow is 7 days or less
Not more than 3-6 pads/ tampons per day
What is not normal?
Heavy menstrual bleeding
>7 days
Loss of more than 80 ml per menstrual cycle
Ovarian cysts with bleeding
Endometriosis
Bleeding following delivery lasting > 24hours

10. Ovarian cysts with bleeding
Ovulation with bleeding is never normal
7% of VWD reported to have bleeding ovarian cysts
Can bleed into the abdominal cavity
Increases risk of endometriosis

11. Problems during menstruation

12. Pregnancy and bleeding
4067 deliveries in women with vWd
(USA)
Risk of bleeding before delivery 10.2
Risk of bleeding following delivery 1.5
Risk of receiving blood transfusion 4.7
Risk of death in mother low (but still high than normal women)
James A 2007

13. Problems during childbirth

14. Childbirth in women with inherited bleeding disorders
Primary PPH
Secondary PPH
Normal 5
0.7%
Hemophilia carriers
22%
11%
VWD
19%
29%

15. It is also not normal Prolonged bleeding from cuts Following surgery
Bruising without any trauma
Nose bleeds
Following tooth extraction
Blood in stools
Anemia requiring blood transfusion

16. What is the prevalence of inherited bleeding disorders in women with menorrhagia?

17. Systematic review 998 women with menorrhagia: 13% had vWD
Shankar M BJOH 2004

18. 7/75 women with menorrhagia had underlying bleeding disorder
N Sherif 2014
53% had underlying bleeding disorder
Rosa Diaz 2014

19. 47.8% had some underlying hemostatic disorder
17.7% platelet dysfunction
13.3% Von Willebrand disease
12.4% factor deficiency
V Serevalli 2013
14.5% had bleeding disorders
6.5% von Willebrand disease in five
5.2% platelet function disorder
Turkiz Gursel 2014

20. 120 women with menorrhagia
19.16% had bleeding disorder
11.6% VWD
3.3% Glanzmann thrombasthenia
Sucheta Trasi 2005

21. Testing for bleeding disorders is a must for
Adolescent girls who present with menorrhagia
Adult women with chronic menorrhagia who have no other cause
Women who are about to undergo hysterectomy for menorrhagia
ACOG 2002

22. If VWD presents more in women, why are less women diagnosed in India?
Gender issues
If VWD presents more in women, why are less women diagnosed in India?

23. HTCs were originally created to treat men with hemophilia
Since 1990s almost 9000 women have sought medical care in HTCs across USA
Indian data?

24. Number of women in HTCs in USA

25. What proportion of women with inherited bleeding disorders have menorrhagia?

26. 70-100% of those with vWD
10-70% of those with other inherited disorders
5-98% with inherited platelet disorders
Significantly longer, heavier menstruation
Significantly more hysterectomies for menorrhagia

27. What are the chances of needing medical care once diagnosed?
S Sanders 2012

28. How does bleeding affect their lives?

29. Health related QOL in VWD
Women with VWD significantly worse than those of men with VWD
Almost as low as that of severe hemophilia
More school absenteeism
Less women likely to undergo secondary education than men (5.5% vs 35%)

30. QOL differences between men and women with VWD

31. QOL differences between those who had menorrhagia and who did not

32. Kadir K Khair 2013

33. K Khair 2013

34. K Khair 2013

35. K Khair 2013

36. Whom do you speak to often?

37. What restrictions do you face?
K Khair 2013

38. Health related QOL in VWD
39% cut down their activities due to menorrhagia
39% had to cut down the work that they do
47% felt they had accomplished less
19.3% felt that dysmenorrhea affected their lives
22.6% did not go to school/work during periods
48.4% were hospitalized for a heavy menstrual bleeding
Fadhlaoui A 2012

39. Survey of health related QOL study
SF 36 v2 survey
30 subjects
3 groups
Girls (Indian) with bleeding disorders
Girls with leukemia undergoing chemotherapy
Normal age matched controls
Radhakrishnan N (unpublished)

40. How healthy are you? 1 very good – 5 very poor

41. Does health limit you in your activities
Does health limit you in your activities? 1: A lot 2: Little 3: Not at all

42. Has you health interfered with social activities? 1:No 5:Very much

43. Factors that determined QOL
Underlying bleeding disorder
Being female
Bleeding disorder (VWD) and being female

44. Is there a severity scale for QOL?

45. Awareness is less in at all stages

46. Surveying gynecologists
983 ACOG members surveyed in 1996
8% of their patients complained about menorrhagia
74% patients presumed to have anovulatory cycles
4% doctors considered VWD as a cause of menorrhagia
3% considered referring them to specialists
<1% of women should have a bleeding disorder
VR Byams 2007

47. Surveying gynecologists
Repeated the survey in 2009
1200 gynecologist interviewed by mail
42.4% (503) responded to the survey
>70% enquired about other sites of bleeding
>60% enquired about a family history of bleeding
77% said they would consider VWD as a cause
What caused this change?
Efforts by hematology providers, community based organizations, government to raise awareness
VR Byams 2012

48. Surveying gynecologists UK
> 80% of the respondents considered the prevalence of VWD in women with menorrhagia to be <1%
12% and 2% of the respondents would consider testing for VWD in an 18 and a 35 year old
Chi C 2006

49. How can we improve? Raise awareness (Advocacy) General public Schools
Young girls
Doctors

51. Day
Pad 1 2 3 4 5 6 7 8 20
Daily score
Day
Tampone 1 2 3 4 5 6 7 8 5 20
Daily score
Total Score >100 is equivalent to >80ml blood loss per cycle
Total score:
PICTORIAL BLEEDING ASSESSMENT CALENDAR
Higham JM, O’Brien PM, Shaw RW
Assessment of menstrual blood loss using a pictorial chart
Br J Obstet Gynecol 1990; 97:734-9

52. International efforts to raise awareness
Women bleed too (UK)
Project Red Flag (USA)
MyGirlsBlood
WG HFI

53. To conclude Lets protect girls with any bleeding disorder
Collaborative efforts
Look after menstrual hygiene
Heavy menstrual bleeding
Identify potential bleeders from the population
Prevent complications

54. Thank you