In the Media: Gynecologist Warns About Unknown Disease: ‘Diagnosis Often 15 Years Too Late’

This article was written by: Eef van Bommel in collaboration with Gynecologist Heleen Eising, February 16, 08:55 for Omroep Gelderland

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Omroep Gelderland
NOS

“It’s just part of it” and “you just have to learn to live with it”—these are things women often hear when dealing with menstrual problems. However, one in three women with severe complaints receives a diagnosis of a blood clotting disorder from their doctor. This condition is so unknown that women often seek help too late, sometimes only discovering after fifteen years that their menstruation is not normal.

This leads to unnecessary risks, warns gynecologist Heleen Eising from Gelre Hospital. “For some women, it has such a major impact on their lives that they say: just remove my uterus.”

Even gynecologists tell these women that “it’s just part of it,” Eising observes. But four in a hundred women with heavy periods and excessive blood loss actually have a clotting disorder that causes unnecessary suffering, anemia, and shame.

“Women tell me they hide sanitary pads behind the toilet during gym class at school, afraid of leaking through. Or that they don’t dare sit on a white couch when visiting someone. Some women lose so much blood that they frequently need emergency hospital visits. Others are even asked if they are being abused at home because bruising and excessive bleeding are also symptoms of the disease.”

“Many women only realize their periods are abnormal during childbirth or after major surgery, such as a hysterectomy,” says the gynecologist from Apeldoorn, who is set to defend her PhD thesis next week on underlying clotting disorders in gynecology.

How can you check if your period is abnormal?

“You can do the 7-2-1 check. If you bleed for more than seven days, have to change your pad or tampon more frequently than every two hours, and if the clots in your blood loss are larger than a 1-euro coin, then it’s time to see your doctor. Some women have their period continuously for an entire year. Other red flags include uncontrollable nosebleeds, bleeding after sex, excessive bruising, prolonged bleeding after surgery, and especially very heavy periods from the very first time you menstruate.”

When do women realize their periods are not normal?

“If a woman has a clotting disorder, her first period is already extremely heavy, with excessive blood loss leading to anemia and abdominal pain. But talking about menstruation at school, work, or even within the family is difficult. Women are often told that ‘it’s just part of it,’ sometimes even by other women in their family. The mother often experiences the same symptoms—since the disorder is hereditary—and says: ‘Yes, this is normal.’ That’s why the diagnosis often comes late, on average 15 to 20 years after the first period.”

“The diagnosis is usually only made after a woman has lost a significant amount of blood, such as during childbirth. Many women lose more than a liter of blood during delivery, while the human body only holds about five liters. In such cases, a blood transfusion becomes necessary, which can be a stressful and risky situation.”

What are the consequences of late diagnosis?

“First and foremost, excessive blood loss. Menstruation is also more painful; these women often suffer from severe abdominal cramps. The uterus contracts more intensely to reduce the wound—the shed uterine lining—during menstruation. For some women, the issue is so severe that they say: just remove my uterus.”

“Because there is still too little awareness of clotting disorders in women, gynecologists often only discover the issue during or after a hysterectomy. In reality, a smaller procedure, such as removing only the uterine lining, could have also helped. Some women say: I wish I had known that was an option. That’s why it’s crucial to inform women in time about potential causes of heavy periods. Every woman has the right to make decisions about her own body, but you need to know what choices you have.”

What can be done about heavy blood loss?

“There are special medications that can prevent unnecessary suffering and absences from school and work. These help the wound clot and stop the bleeding. There are also medications that thicken the blood, reducing blood loss. Many women benefit from a Mirena IUD, which usually stops menstruation altogether. In cases of clotting disorders, it significantly reduces blood loss. Taking the pill continuously is another option. The most important thing is that women know they can visit their doctor for menstrual complaints. The key lies in detecting the disorder in time.”