Women with bleeding disorders face many complications during their lifetime. In addition to the usual symptoms associated with bleeding disorders in both men and women, women face challenges such as heavy bleeding with menstruation and pregnancy.
Ariela Marshall, M.D., a Mayo Clinic hematologist, researches bleeding disorders such as hemophilia and von Willebrand disease in women. Dr. Marshall explains women with very severe bleeding disorders may be diagnosed in childhood, as they may display symptoms such as nosebleeds, bleeding in the brain, or bleeding from the gastrointestinal tract. However, if a bleeding disorder is not diagnosed in childhood, women may start having symptoms when they start having menstrual periods.
“Not all women with heavy periods suffer from bleeding disorders, but women who have heavy periods are more likely to have a bleeding disorder than women who do not have heavy periods,” Dr. Marshall says.
According to Dr. Marshall, due to a lack of awareness that heavy periods can be the sign of a bleeding disorder and sometimes should be worked up further. Bleeding disorders are sometimes not diagnosed as early as they could be.
“Sometimes, when teens tell people that they have very heavy periods, they get told things like, ‘things are different for every woman’ or even ‘it’s something you have to deal with’,” Dr. Marshall says. “If a doctor doesn’t ask more questions about the bleeding and see if further workup is needed, it can be a missed opportunity to diagnose and treat a bleeding disorder and improve the woman’s quality of life.”
As a result, some women have even gone on to have hysterectomies because of very heavy menstrual periods that happen because of their bleeding disorder.
“Had they been diagnosed earlier on, they may have been able to get treatment for their heavy periods and other bleeding symptoms and in some cases may have been able to avoid needing the hysterectomy,” Dr. Marshall says.
One of Dr. Marshall’s specific interests is how to manage pregnancy in patients with inherited bleeding disorders and extra methods of caution that are practiced to keep the mother and the baby safe before, during and after delivery. Below, she shares some of the complications a woman with a bleeding disorder might experience during pregnancy.
“Every pregnancy is different, but for all women with bleeding disorders we need to take special precautions, especially starting at about 36 weeks, so that we are prepared by the time the woman goes into labor,” Dr. Marshall says.
When a woman with hemophilia is pregnant with a male child, extra caution must be exercised around the time of delivery to prevent increased bleeding risk.
“If a woman who is a carrier of hemophilia is having a baby, and the baby is male, there’s a good chance that the child could be affected by hemophilia,” Dr. Marshall says. “Because of this, we want to be very careful for the baby’s health and this means not doing things like using forceps or vacuums for delivery.”
For a lot of women, the choice to get an epidural is a big decision. According to Dr. Marshall, extra consideration goes into this decision for women with bleeding disorders because an epidural represents a high risk for bleeding. Further caution and preparation must be taken to ensure the mother’s factor levels are at a safe level. .
The same precautions come into play if the mother must undergo a cesarean section delivery (C-section).
Though women with bleeding disorders are mostly at a disadvantage during the course of their lifetime, Dr. Marshall explains they do have one advantage. Levels of von Willebrand proteins naturally go up during the course of pregnancy, and while a woman without von Willebrand disease is at a higher risk for blood clots during those nine months, a woman with the disease reaches an ideal level.
“Factor VIII levels and von Willebrand proteins naturally increase during pregnancy for all women,” Dr. Marshall says. “The reason for this is that women lose blood during delivery and the body is naturally trying to protect itself from bleeding by increasing the levels of Von Willebrand and factor VIII, which helps decrease bleeding.”
Therefore, women with Von Willebrand disease and hemophilia A are relatively protected from bleeding during pregnancy.
“Many of our patients with Von Willebrand disease and hemophilia A don’t need any treatment at all during the course of their pregnancy,” Dr. Marshall says. “We don’t even need to check their levels throughout most of the pregnancy, until around week 36, because we know that the levels increase in all women as the body prepares itself for delivery.”
However, immediately after delivery, a woman’s Von Willebrand levels must be closely monitored and the natural rise in protein levels ceases to exist.
“Von Willebrand levels crash back to normal anywhere from a couple of hours to a couple of days following delivery,” Dr. Marshall says. “We closely monitor the patient for excessive blood loss to guard against a postpartum hemorrhage.”
While many people dread getting older, aging calls for a sigh of relief among some women with bleeding disorders. Women with von Willebrand disease may see improvements with their disease as they age, since von Willebrand levels naturally increase in all people as they age.
“Sometimes, the normal ageing process is treatment enough,” Dr. Marshall says.
As for hemophilia, Dr. Marshall says that there may be some increase in factor levels as a person ages, though complete normalization is not as common as with von Willebrand disease. For hemophilia A, Dr. Marshall says that factor 8 levels may increase with inflammation in the body and somewhat with aging, but for hemophilia B increases in factor 9 levels are not as common.
Menstruation, pregnancy, and aging are complicated enough for all women. Add bleeding disorders into the mix, and they are faced with even more obstacles throughout the course of their lives. Dr. Marshall hopes that by raising awareness about bleeding disorders in women specifically, there will be a global increase in diagnoses early on to better care for women throughout their lives.
Read these related blog posts, "Bleeding disorders in women," and "Hemophilia: from Mayo Clinic patient, to employee, to Connect moderator."