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Heavy menstrual bleeding (HMB) is common with hemophilia. Up to 90 percent of women with bleeding disorders experience HMB, along with 57 percent of hemophilia carriers, according to studies published in the journals Hematology and Research and Practice in Thrombosis and Haemostasis.
Living with HMB from hemophilia can be challenging — HMB can affect both your physical and emotional health. Although HMB can be persistent, there are treatments available to help manage it. You may be able to control your heavy bleeding with home care strategies or with treatment from a hematologist (blood disorder specialist).
Keep reading to learn more about heavy menstrual bleeding from hemophilia, along with tips and treatments for managing heavy periods.
Heavy menstrual bleeding goes beyond “typical” menstrual bleeding and can involve excessive blood loss. HMB can affect people with hemophilia in different ways. The bleeding may be so excessive that it affects your physical health, mental well-being, or overall quality of life.
If you have HMB as someone with hemophilia or as a hemophilia carrier, it can involve:
As mentioned, HMB might involve having more frequent periods or bleeding for more than seven or eight days in a month. One MyHemophiliaTeam member said, “I have had two periods a month my whole adult life, even while pregnant.”
Heavy menstrual bleeding with hemophilia can have medical consequences that can be bothersome or even dangerous if unaddressed. These include anemia, fatigue, and other effects that can impact your quality of life.
HMB can be a major concern if you have hemophilia or are a hemophilia carrier. If you’re a hemophilia carrier, you may not have any symptoms other than HMB.
There are ways to manage HMB in general, but some common HMB treatments may not be as helpful for those with an underlying bleeding disorder. You might need to try several strategies before finding a routine that helps reduce bleeding and HMB complications. It’s best to work with a team of medical providers, including a gynecologist and hematologist.
Some MyHemophiliaTeam members have found relief through various DIY remedies. One shared a few helpful suggestions for managing HMB at home. “I find ice and rest, sometimes iron supplements, seem to make it shorter and help with fatigue and anemia,” they said.
Heavy periods shouldn’t restrict your activities, and treatment may be necessary if they do. However, rest and stress-reduction strategies might help you feel better in the moment. It’s also important to stay hydrated to make up for blood loss.
Your healthcare team might also advise you to track your periods to better understand your treatment needs. Be sure to write down when your periods start and end and how many menstrual products you go through so you can tell your healthcare team.
One study published in the journal Research and Practice in Thrombosis and Haemostasis found that more than half of women and girls with HMB had an iron deficiency with or without anemia. Iron deficiency is common in people with bleeding disorders and carriers, but it can be underdiagnosed and underaddressed.
While taking iron supplements won’t reduce bleeding, doing so can help prevent or treat iron deficiency from HMB. Research suggests that iron supplementation may help increase focus and concentration for people with HMB. Iron can be given as an oral supplement, but your doctor may recommend IV iron, especially if your anemia and iron deficiency are more severe.
Several nonhormonal medications (medications that don’t use hormones) may be prescribed to help reduce HMB. Hemostatic agents like amniocaproic acid or tranexamic acid aim to support your blood’s clotting abilities and prevent heavy bleeding during menstruation. Your healthcare provider might prescribe them if you can’t or don’t want to use birth control.
MyHemophiliaTeam members have discussed birth control options as being beneficial for their HMB. “Birth control thankfully controls mine well enough,” shared one member. “Prior to that, my periods were very bad, and I would be anemic about one to two times a year and require a dose of factor in order to compensate.”
Combined oral contraceptives like the transdermal patch or birth control pills may help with the long-term management of HMB if you have hemophilia or von Willebrand disease. If you’re unable to take estrogen for any reason, then your provider may recommend progesterone-only birth control options instead.
You might need to try a few contraceptive options before finding one that helps your HMB and aligns with your preferences. As one MyHemophiliaTeam member shared, “Birth control pills are the way I went, and they help! It took so many tries with so many brands to finally figure out which would work.”
A more invasive procedure may be an option to treat your HMB if you’ve exhausted other therapies — endometrial ablation is one such example. Endometrial ablation is a procedure that destroys your uterine lining. It can stop or significantly reduce menstrual bleeding, but it can cause infertility.
One MyHemophiliaTeam member shared a positive experience with endometrial ablation for hemophilia-related HMB: “When I was finished having my (many!) children, I went for an ablation. It is like a cauterization of the uterine lining. I haven’t had a drop of blood since December 2006.”
A hysterectomy may be an option for you if nonsurgical treatments haven’t improved your HMB. Research suggests that a hysterectomy is the superior treatment for improving the quality of life of someone with HMB from a bleeding disorder that hasn’t improved with other treatments.
A hysterectomy removes your uterus, so getting pregnant after this surgery isn’t possible. It also comes with the risk of complications. Still, it may stop your HMB if no other treatments have helped.
Discuss the possible risks and benefits of a hysterectomy or other procedures for HMB with your doctor.
Your healthcare team can guide you through the process of finding treatment for your HMB and preventing complications like anemia. Tell your doctor if you’re concerned about how much you bleed when you’re on your period.
HMB can cause substantial blood loss, so it can be dangerous in severe cases. Seek emergency medical help if you bleed through two or more menstrual products per hour for two to three hours in a row.
Although menstruation can be a sensitive subject, you shouldn’t feel embarrassed about bringing it up with your doctor. If you consistently have heavy periods, ask about screening for iron deficiency.
Your doctor can help you weigh the risks and benefits of various HMB treatments in the context of your health. They can also help you manage your bleeding disorder with clotting factors or other hemophilia treatment options.
If you think you might be a carrier of hemophilia, ask your healthcare provider about genetic testing. Genetic tests can tell you if you carry the gene change or mutation that causes hemophilia, which can be passed down to your children. Talk to your doctor about genetic testing for hemophilia A or hemophilia B.
On MyHemophiliaTeam, people share their experiences with hemophilia, get advice, and find support from others who understand.
How do you manage heavy menstrual bleeding from hemophilia? Let others know in the comments below.
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