One in five women with heavy periods has a hidden blood clotting disorder
Thousands of young women who experience heavy periods unknowingly suffer from a genetic condition that puts them at high risk for life-threatening complications during childbirth.
Conditions that affect the blood’s ability to clot affect around 43,000 women in the UK, but according to the latest figures, only just over a third have been diagnosed.
The most well-known clotting disorder is hemophilia, which causes internal bleeding that is often severe, and although rare, it mainly affects men.
However, women can also be carriers of the haemophilia gene and be slightly affected – something many doctors are not aware of.
There are other blood clotting disorders that affect men and women equally and that are more common but, paradoxically, less well known.
While they often cause few symptoms in men, women who suffer from them often experience problems with menstruation.
According to international studies, one in five women who seek medical advice for heavy periods will have a bleeding disorder but will not be tested, which experts say is a missed opportunity.
Now, in an effort to improve the diagnosis of bleeding disorders, experts are calling on GPs and doctors to ask a series of questions that will highlight telltale signs when patients complain of heavy or very long periods, including whether similar symptoms run in the family. .
Gemma Gardner (pictured with daughter Summer), 42, is a prime example. Despite heavy periods that ‘wiped her out’ and bleeding for days after visiting the dentist, her own problem wasn’t picked up until her son was diagnosed with haemophilia at eight months old.
The Haemophilia Society has also launched an online symptom control questionnaire designed to encourage women who suspect they have an undiagnosed problem to see a doctor and request the appropriate tests.
Other telltale symptoms of an undiagnosed bleeding disorder include frequent bruising, nosebleeds, or prolonged bleeding after dentistry. Serious problems can occur during or after surgery, leading to severe blood loss and problems with non-healing wounds.
Heavy periods have been linked to anemia, a lack of red blood cells in the body that leads to symptoms such as debilitating exhaustion, feeling extremely cold and pale skin.
Women with bleeding disorders also often have complicated deliveries, with heavy bleeding. In extreme cases, this can be fatal.
“Because hemophilia most commonly affects men, clinicians often think that women do not have bleeding disorders, but this is not the case,” says nurse Debra Pollard, an expert on bleeding disorders.
One patient, assistant professor Jo Traunter, was plagued with bruising and heavy periods, but was not diagnosed until age 37.
The mother of three from York, now 53, said: ‘I just thought it was normal to have a 10-day period, because my mother had that too. Women didn’t really talk openly about that sort of thing back then.’
Jo was diagnosed with the genetic bleeding disorder of von Willebrand’s disease shortly before giving birth to her third child, by scheduled cesarean section.
She says, “The anesthesiologist called me before I went in. He said he remembered giving birth to my second child, which was also a cesarean section, and that I bled a lot, which meant it was a difficult delivery. It was nine years ago, so it must have been bad staying on his mind.
Periods that last longer than seven days, or the need to change menstrual products in two hours or less, may indicate a problem
“He suggested that I go to a hematology clinic before my next cesarean section. I explained my symptoms and history and they told me on the spot they thought I had von Willebrand, which confirmed tests.
“My next cesarean was even more complicated than the last, but this time the hematology team was on hand to give me the right medication so I didn’t lose too much blood. The fact that they did probably saved my life.”
There are many different types of bleeding disorders and they all involve a lack of compounds in the blood that are vital in helping it to clot.
I suddenly have sore spots on my back… what’s wrong with me?
Painful acne can affect any part of the body with oil-secreting glands or hair follicles, at any age. Acne on the face is common, but half of patients also develop acne on the back and 15 percent of patients are affected by the chest.
Spots appear when fat-producing glands next to hair follicles produce increased amounts of oil, which in turn makes a usually harmless skin bacteria called P. acnes more aggressive, causing infection and inflammation.
Spots come in many forms, including papules, small red bumps that feel tender or painful, and pustules, similar to papules but with a white tip. Hair removal can cause folliculitis — inflammation of the hair follicles — that may need to be treated with antibiotics.
Each condition differs exactly in which compounds are missing, meaning tests to highlight them and treatment vary.
The most common is von Willebrand’s disease, which is believed to affect one in 1,000 people, with varying degrees of severity. Because of the type of deficiency involved, the condition does not show up on standard primary care blood tests.
“Women with undiagnosed bleeding disorders like von Willebrand are at a higher risk of bleeding during surgery or childbirth, which can be dangerous,” says Debra Pollard. ‘
But heavy periods can be debilitating, which is why it’s important to get a diagnosis and treatment.
Periods that last longer than seven days, or the need to change menstrual products in two hours or less, may indicate a problem.
Some women soak through the bedding or find that they can’t go to long meetings for fear of having to change their tampons or pads.
‘But there are no real fixed definitions of heavy periods. In short, if your period affects your life, get them checked out.’
Bruising, which can be severe and appear with no apparent cause, can also lead to problems, she adds.
“It’s mostly cosmetic, but patients have said they avoid wearing short sleeves or a skirt in the summer because people will see bruises and make assumptions.
“If we know there is a problem, there are drugs we can give to reduce risks and improve quality of life.
“But many go undiagnosed and often say their symptoms are attributed to ‘just one of those things,’ especially if the problems seem to run in the family.”
Gemma Gardner, 42, is a prime example. Despite heavy periods that ‘wiped her out’ and bleeding for days after visiting the dentist, her own problem wasn’t picked up until her son was diagnosed with haemophilia at eight months old.
Gemma, who works in social media marketing and lives in Banbury with husband John, 43, and their children Summer, 14, and Zane, 11, says: ‘After Zane was born, he started getting big, lumpy bruises all over. his body for no reason, and tests showed he had hemophilia.
“When Mom found out, she told me that her great-grandfather died of haemophilia when he was 30. I had no idea.
“The doctors suggested that my daughter and I get tested, and we’ve been found to have minor deficiencies in the clotting agents in our blood.
‘Zane has been badly affected, but receives medication at home through an IV, which takes 15 minutes twice a week and can therefore lead a normal life.
“Summer and I don’t need medication, but we all carry charts showing we have bleeding disorders, so if we need emergency surgery, doctors would know to give special treatment. But I don’t take regular medication and luckily I haven’t had any problems so far.’
Jo Traunter, whose children are now 16, 26 and 28, wasn’t so lucky. Despite her hematology team attending the birth of her third child, things didn’t go according to plan and she had to have emergency surgery due to heavy bleeding.
“It’s shocking for any woman to go through, but I’m lucky to have survived and to have three healthy children.
‘I went to doctors so many times to try and figure out why I was having heavy periods, bleeding and bruising, but because standard tests showed nothing untoward, no one could figure out why.
“It was a relief to finally have an answer, and it worries me that so many women are living with symptoms like I had, without treatment.
“It’s very important that people get a diagnosis.”