Unknowingly, thousands of teenage women experiencing heavy periods may be suffering from a genetic disorder that can lead to life-threatening complications in childbirth.
According to latest statistics, approximately 43,000 UK women are affected by conditions that reduce blood’s ability for it to clot. Yet, just over one third of those diagnosed have been confirmed.
Haemophilia is the most well-known disorder that causes internal bleeding. It is a condition which is primarily affecting men.
However, women can also be carriers of the haemophilia gene and be mildly affected – something many doctors are unaware of.
Other blood-clotting conditions that can affect both men and women are also more prevalent, but are paradoxically less known.
Although they are less common in men than women, the symptoms can cause problems for both men and women.
International studies show that one fifth of women seeking medical attention for heavy periods may have a bleeding disorder, but they aren’t tested. Experts say this is an opportunity missed.
In an effort to increase the diagnosis rate of bleeding disorders experts have asked doctors and GPs for a set of questions to help patients identify signs such as heavy or prolonged periods of bleeding.
Gemma Gardner (pictured here with her 42-year-old daughter Summer) is one example. Although she suffered heavy bleeding and periods for several days, her problem wasn’t diagnosed until eight months after her son was born.
Online symptom-checker has been created by The Haemophilia Society. This questionnaire is intended to help women suspecting they may have a undiagnosed condition.
You may also notice signs of undiagnosed bleeding disorders such as frequent bleeding, nasal bleeding and prolonged bleeding following dental treatment. There are serious problems that can arise after and during surgery. These problems could cause severe bleeding, as well as non-healing wounds.
Anaemia is characterized by heavy periods. This refers to a deficiency in red blood cells that can lead to severe symptoms such as fatigue, extreme cold, and pale skin.
Many women with bleeding disorders have difficult labours that include heavy bleeding. Extreme cases can lead to death.
Debra Pollard, bleeding disorder specialist nurse, says that haemophilia is most common in men. This leads to clinicians thinking women are immune from bleeding disorders.
Jo Traunter was a university lecturer who was affected by heavy periods and bruising. She was diagnosed at 37.
According to the York mother-of-3, aged 53, she said that she thought that it was common for periods to last ten days because her mum did that. These were not topics that women discussed openly back in those days.
Jo was first diagnosed with Willebrand’s genetic bleeding disorder shortly after she gave birth by planned caesarean.
According to her, ‘The anaesthetist called prior to me going in. The anaesthetist called her before I went in and said that he had recalled the birth of my second baby, also caesarean. He added that I’d been bleeding a lot, so it was difficult. It had been nine years since then, so it’s not surprising that he still has the memory.
Problems could arise if periods last longer than seven days or if you have to replace period products within two hours.
“He recommended that I visit a haematology clinic prior to my next C-section. They asked me about my history and symptoms, and then told me that they believed I was von Willebrand. Tests confirmed this.
“My second C-section was much more complex than the first, but my haematology team helped me with the proper medication. I wasn’t even bleeding as much. They saved my life.
Many bleeding conditions exist, with each requiring a shortage of blood compounds that will help it clot.
Every condition is different in the exact compounds that are missing. This means that treatment and tests for flagging them up will vary.
One in every 1,000 individuals is likely to have von Willebrand, the most severe of all. However, severity levels vary. Because of the nature of the deficiency, it doesn’t appear on regular GP blood tests.
Debra Pollard says that women with bleeding disorders such as von Willebrand, are more likely to experience bleeding complications during childbirth or surgery.
Heavy periods can cause severe symptoms. It is important that you get diagnosed and treated.
Problems could arise if periods last longer than seven days or you need to replace period products in less than two hours.
Many women find that they have to soak their bedding or they are unable to attend meetings for long periods of time because they fear they will need to change their pad or tampon.
“But heavy periods are not defined in a set way. If your period is affecting your daily life, you should get it checked.
She adds that severe or unremarkable bruises can cause problems.
“It’s primarily cosmetic. Patients have told me they avoid wearing short sleeves and skirts in summer, because it can cause bruises.
“If there is a problem we can offer medicines to reduce the risk and increase quality of our lives.
‘But many go undiagnosed and often say their symptoms are put down to ‘just one of those things’ – particularly if the problems seem to run in the family.’
Gemma Gardner is 42. Her own problems were only discovered when her eight-month-old son was diagnosed as haemophilia.
Gemma is a social media marketing specialist and lives with John, her husband, in Banbury. They have two children, Summer (14 years) and Zane (1 year).
Mum discovered that my great-grandfather had died from haemophilia at the age of 30. I had no idea.
“The doctor suggested that my daughter and me get tested. We were found to have mild deficiencies in the clotting components in our blood.
“Zane” is very ill, but has medication at home via drip, which takes only 15 minutes two times per week and allows him to live a normal lifestyle.
“Summer and me don’t require medication. However, we each have cards showing that we have bleeding disorders. If we were to need emergency surgery, doctors will know how to provide special care. But, I don’t take any medication and I haven’t had any issues so far.
Jo Traunter (whose children now number 16 and 26 respectively) was not as fortunate. Her haematology team was there to help her with the birth of her third baby. However, heavy bleeding caused her to need an emergency hysterectomy.
It’s a very upsetting experience for any woman. But, I was able to survive and have three children.
“I visited doctors many times trying to figure out the reason I had heavy periods, bleeding, and swelling. But standard testing didn’t show anything unusual, so no one was able to tell me why.
“It was a relief that I finally had an answer. And it bothers me that so many women with similar symptoms to mine are going on without treatment.
“It is really important that patients get a diagnosis.