Bleeding disorders going undiagnosed; new guidelines to help

Nearly one percent of the population suffers from bleeding disorders, yet many women don't know they have one because doctors aren't looking for the condition, according to researchers at Duke University Medical Center.

That's about to change, now that an international expert consortium specifically outlined the definitive signs that may signal the presence of a bleeding disorder in women. The consortium's recommendations are published online and will appear in the July issue of the American Journal of Obstetrics and Gynecology.

The new guidelines aren't just for doctors. Women who suffer from heavy menstrual cycles should be on the lookout for these signs as well, says Andra James, MD, a Duke obstetrician, who says about 25 percent of women with heavy menstruation may have an undiagnosed bleeding disorder.

"Heavy bleeding should not be ignored," says James, the paper's lead author. "When a woman's blood can't clot normally the most obvious sign is a heavy period."

Yet when faced with these scenarios, most doctors aren't suspecting a blood clotting problem is to blame. "Sometimes they think hormones are the cause, or fibroids," says James. "In some cases they recommend removal of the uterus or offer another gynecologic explanation when the real contributing factor is a blood clotting disorder."

In previous studies, women who ultimately were treated for a bleeding disorder reported waiting 16 years, on average, before being diagnosed. In extreme cases, James says undiagnosed bleeding disorders have led to women bleeding to death during menstruation, childbirth and surgical procedures.

The most common inherited bleeding disorder is von Willebrand disease, says James, author of 100 Questions and Answers About von Willebrand Disease (Jones and Bartlett). Common criteria for diagnosis include the presence of a family history of bleeding, personal history of bleeding and laboratory tests that indicate the lack of a protein called von Willebrand factor which is essential for clotting.

Without the laboratory test, the consortium says women and doctors should be on the lookout for the following:

• Heavy blood loss during menstruation
• Family history of bleeding disorder
• Notable bruising without injury
• Minor wound bleeding that lasts more than five minutes
• Prolonged or excessive bleeding following dental extraction
• Unexpected surgical bleeding
• Hemorrhaging that requires blood transfusion
• Postpartum hemorrhaging, especially if occurs more than 24 hours after delivery.

"Too often women think heavy bleeding is okay because the women in their family -- who may also have an undiagnosed bleeding disorder -- have heavy periods as well," says James. "We want women who continually experience abnormal reproductive tract bleeding, specifically heavy menstrual bleeding, to be alert to these other signs and approach their physicians about being evaluated."

In addition, she says doctors should be asking the right questions and ordering appropriate laboratory tests in suspected patients.

"Not every patient who has abnormal reproductive tract bleeding has a bleeding disorder, and most don't," James says. "But since up to one-quarter do, this needs to be recognized. Once treated, these women can expect to have normal periods and go through childbirth safely."