Heavy blood loss during your menstruation? This could be due to a bleeding disorder. Dr. Marieke Kruip, hematologist and researcher at the Erasmus Medical Centre in Rotterdam (Holland), believes this connection still isn’t acknowledged enough. ‘Yet a consult with a hematologist can make all the difference.’

Bleeding disorders come in all sorts of types and gradations. Marieke Kruip: ‘Hemophilia, a bleeding disorder that only affects men, is probably the best-known. But women – who are only carriers of this disease – can certainly have bleeding complaints. With all bleeding disorders in which the body’s ability to clot is reduced, you can presume that females of reproductive age are affected more than men. This is because of heavy blood loss during their menstruation and heavy bleeding after giving birth.’

Von Willebrand disease (VWD) – the most common genetic bleeding disorder which affects 0.5 to 1% of the population – almost always includes heavy menstrual periods. The Willebrand in Nederland-onderzoek (Willebrand in Holland-research) started in 2007 and was led by haematology professor Frank Leebeek of the Erasmus Medical Centre. This study demonstrated that over 85% of women with VWD suffer from menorrhagia complaints such as heavy blood loss and passing large clots. A remarkably large number of the women participating in the research (20%) had undergone a hysterectomy, meaning they had their uterus removed. In women who don’t suffer from bleeding disorders, this number is significantly lower (11%). In 37% of the women, VWD was only diagnosed after the women had undergone the hysterectomy. You could ask yourself if this heavy medical procedure was really necessary.

‘With all bleeding disorders in which the body’s ability to clot is reduced, you can presume that females of reproductive age are affected more than men’

Postgraduate research by dr. Marieke Knol of the University Medical Centre Groningen (UMCG) also showed that bleeding disorders can cause heavy menstruation; something which affects 1 in 5 Dutch women. Knol studied the data of all women who reported to the gynaecology department with heavy period problems in 2006. Only 2 of these 102 women were tested for a bleeding disorder as possible cause of their complaints. In the following three years Knol also tested 102 women with heavy periods; 29% of them tested positive for clotting disorders. In most cases, it was a mild form of VWD.

VWD – caused by a deficiency of the von Willebrand-factor (vWF) in the platelets – is named after the Finnish physician Erik von Willebrand (1870-1949), who first observed this disorder in the Scandinavian Åland Islands. There, he examined the 5-year-old girl Hjördis, who bled severely after a relatively small wound. Her relatives suffered from similar complaints: four of her sisters had already died from uncontrolled bleeding at an early age. Hjördis herself tragically bled to death during her menstruation. Intrigued by this history, Von Willebrand studied this condition, which he first called ‘pseudo-haemophilia,’ further.

Bleeding to death during your menstruation isn’t something that’s likely to happen now, at least not in Western countries. But the fact that heavy menstrual periods can be caused by a bleeding disorder still isn’t acknowledged enough, believes Marieke Kruip. ‘Also not by the women themselves. Bleeding disorders are often hereditary. More members of the same family are suffering from it, which leads to the idea that having a heavy menstrual period is normal.’ Also doctors don’t think about this possibility enough. ‘Women are sent to a gynaecologist; that is, if they’re referred to a specialist at all.’

‘Bleeding disorders are often hereditary. More members of the same family are suffering from it, which leads to the idea that having a heavy menstrual period is normal’

There are various reasons why the earlier detection of bleeding disorders in women is important. ‘Women with bleeding disorders often take NSAIDs such as ibuprofen or diclofenac against their menstrual complaints. However, these drugs are bad for clotting which makes the condition worse.’ Also, misunderstood blood diseases have an enormous impact on the quality of life. ‘Yet a consult with a hematologist can often make all the difference. Heavy blood loss caused by a bleeding disorder can be limited with simple measures.’

First choice is normally the contraceptive pill or the Mirena IUD. ‘Option two is tranexamic acid (cyklokapron), which prevents clots from breaking down too quickly so you can influence the duration and intensity of the blood loss. Third remedy is desmopressin or DDAVP. This can be prescribed to carriers of haemophilia A or women with VWD. The advantage of DDAVP is that you only have to use it on the heaviest days, but there are also some disadvantages. You can’t just write a prescription. There aren’t many other solutions within the field of haematology. For women who don’t want children, endometrial ablation – removing the uterine lining -, is also an option, but that’s the area of a gynaecologist.’

With her so-called Crescendo study, Kruip – who currently also researches DDAVP – wants to find the key to a quicker diagnose. ‘Every year 200 to 300 patients with misunderstood bleedings report to the Haemophilia Treatment Centre of the Erasmus MC; 70% of them are women. It isn’t always possible to determine unequivocally whether they have a bleeding disorder or not. Research into suitable laboratory tests to determine bleeding disorders has always been done on men. That’s because it’s easier: no need to consider changing hormone levels. Luckily, nowadays more attention is being paid to gender differences in healthcare.’

‘We know that coagulation factors in women vary during their menstrual cycle’

‘Meanwhile, we know that the coagulation factors in women vary during their menstrual cycle. That raises the question at what point of the cycle it’s best to measure the blood levels. In the Erasmus MC we already take this into account and for example ask female patients to return in two weeks’ time. But not every hospital does this. I think we’d be able to determine quicker whether women are suffering from a bleeding disorder or not if we’d gain an understanding of the differences in levels during the cycle. Currently, the group of women we’re just not sure about is still too large.’

April 17 is #woldhemophiliaday

More information? hemophilia.org/Bleeding-Disorders/

See also:
When is a lot too much
No more periods
Too little: also possible?
Spotting in the spotlights
It’s not my period, it’s PMS
Pelvic pain because of endometriosis