How can a nursing hemophilia carrier control bleeding?

Question

Hi doctor,

I am 26 years old and a carrier for hemophilia B, and just had my first period after giving birth two months ago, and the bleeding was absolutely horrible. It lasted 12 days, and I was changing super tampons every hour for the first four days. My factor IX activity came back at 35 %, which my hematologist says is low for a carrier. I am breastfeeding and worried about taking anything that might affect my milk supply. During delivery, I had a pretty bad tear that took forever to stop bleeding and needed extra stitches. My iron levels are now at 8.9, and I feel exhausted all the time. The pediatrician tested my baby boy, and his factor levels are normal, but I am worried about future pregnancies. My periods before pregnancy were always heavy, but this is much worse. Should I be taking some kind of clotting factor replacement? My gynecologist wants to put me on birth control to control the bleeding, but I am not sure what is safe while nursing.

Kindly guide.

Thank you.

Answer 1

Hi,

Welcome to icliniq.com.

I am so sorry you are going through this. That sounds incredibly overwhelming, especially with a new baby. Your exhaustion makes perfect sense with low iron levels. Let us get you started on a strong iron supplement (or even an infusion, which is safe while breastfeeding) to help with that crushing fatigue.

Regarding the bleeding, your factor IX level is quite low for a carrier, explaining the heavy periods and the trouble after delivery.

While clotting factor concentrate is an option during acute heavy bleeding, for ongoing period management, a progestin-releasing IUD (intrauterine device) is often the safest and most effective first step for someone breastfeeding. It delivers hormones locally, minimally affecting milk supply, and dramatically reduces bleeding in most women.

Tranexamic acid (Lysteda) pills taken only during your period days are another breastfeeding-safe option to help control the flow. You absolutely need to coordinate closely with your hematologist on this. Managing future pregnancies will involve specialized preparation with them, but focus on recovering now.

Thank you.