Clotting with menstral cycle

By Jan123 April 18, 2018 - 7:20am

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My daughter has Factor v and last year developed a PE. She was on blood thinners for 6 months and now is off. She has terrible menstral cycles and is very irregular. When she does get her cycle, the week leading up to it she is always very sick. Pain, circulation issues, dizzy, complete fatigue and migraine.
This month the cycle was so bad she passed clots the size of 4 to 6 ounces in size.
We are not sure if this is due to Factor V but we feel there may be some correlation. To make matters worse she is a celiac so she deals with that autoimmune issue as well.

ANYONE ..... experience issues with this?? We aren't sure if we should see GYNO or HEMO or what kind of specialty anymore and general doctors don't seem to know what to do for her. H E L P

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SusanC HERWriter Guide

Hello Anon

Thank you for writing.

For the benefit of our readers, your daughter has a blood clotting disorder called factor V Leiden.

The condition is the most common inherited thrombophilia (clotting disorder), and affects mostly young women, although it can affect all ages.

Depending on a persons “recessive” or “dominant” gene, this can affect up to 80 in 1,000. If she has this genetic feature, she can take precautions that can significantly affect her health.

Women who take birth control (most are hormone based)– or hormone replacement therapy (HRT), people who travel by plane or car and women who plan on getting pregnant should assess their risk factors.

While many women get many clots during their cycle, your daughters condition may be the cause of these significant clots and may be the cause of her rather serious PMS/PMDD.

While there is no cure for her condition, she should certainly talk to her gynecologist about her menstrual cycle. She may work with him/her in addition to working with a hematologist. She may need blood thinners again.

Her female relatives should also be checked for this condition.

She should set up an appointment with her gynecologist to start, particularly one familiar with Factor V Leiden.

Best,
Susan

April 18, 2018 - 11:23am