Bev Axford-Hawx, 46, works at a hospital and says her critical days have always been tough, but she’s never taken it seriously.
“I used to work in aviation, we moved around a lot,” she says. – Once every couple of years I had a complete medical examination, but it was always carried out by men of age. They just rolled their eyes and never figured out what was wrong with me.”
Bev’s long, painful and difficult critical days were physically exhausting and had a huge impact on her work, personal life and even self-confidence: “It was so restless. Every time I hosted or attended a party or was invited to a wedding, I prayed that the date would not coincide with my period.”
When Bev finally turned to specialists, the doctors said that she would get better when she gave birth to children. Indeed, at first she felt relief, but then it became worse than ever. Bev was already afraid to talk to doctors and thought that this was an integral part of a woman.
Ob/gyn and colleague Bev Malcolm Dixon is investigating her symptoms and believes she is one of many thousands of women whose painful symptoms are related to hereditary von Willebrand disease, which impairs the blood’s ability to clot. The main factor in the disease is either the lack of protein in the blood, which helps it thicken, or its poor performance. This is not hemophilia, but a more serious bleeding disorder in which another protein plays a major role.
According to Dixon, up to 2% of people in the world have the genetic mutations that cause von Willebrand disease, but few people know they have them. And if men are not concerned about this fact in any way, then women will feel discomfort during menstruation and childbirth. The doctor says that the moment of treatment is often missed, because women do not consider it necessary to focus on their problem.
“When a woman reaches puberty, she goes to the doctor, who prescribes birth control pills, which is not very effective in controlling the bleeding itself if it is associated with von Willebrand,” Dixon says. – Pills are not suitable, others are prescribed to a woman, and so on. They try different medications that help for a short time but don’t fix the problem forever.”
Painful critical days, “floods”, the need to frequently change hygiene products even at night, sometimes nosebleeds and serious injuries after minor blows, and a long recovery after dental procedures and tattooing are the main signs that a person has von Willebrand.
“The problem is that when women are asked if their periods are normal, they say yes, because all the women in their family have had painful periods,” says Dr. Charles Percy, a consultant hematologist at the Queen Elizabeth Hospital in Birmingham. “There is a lot of disagreement about what is normal, but if the bleeding continues for more than five or six days, it makes sense to consider von Willebrand.”
In the UK, about 60 women a year have a hysterectomy (removal of the uterus). However, this could have been avoided by taking preventive measures in advance.
“Had we been more aware of the von Willebrand background, we might have avoided the hysterectomy. But it is simply ignored as a diagnosis,” says Dr. Percy.
Bev Axford-Hawks decided to remove the uterus before she knew about the possible treatment for the problem. Four days after the operation, she again threw herself into agony and began to bleed internally. Another urgent operation was required to remove a large blood clot in the pelvic region. She then spent two days in intensive care.
After her recovery, Bev spoke to her colleague Malcolm Dixon, who agreed that she had all the symptoms of von Willebrand disease.
Dr. Percy states that some women benefit from early tranexamic acid, which reduces bleeding, while others are given desmopressin, which increases blood protein levels in von Willebrand’s disease.
Bev’s life has improved immeasurably since her hysterectomy. Although such drastic measures could have been avoided, she is glad that she can now work and plan holidays in peace, without worrying about her periods. Beth’s only concern is her daughter, who could have contracted the disease, but Beth is determined to make sure the girl doesn’t have to face what she had to do.
Other causes of painful periods
In some cases, the cause cannot be identified. However, there are a number of possible medical conditions and some treatments that can cause heavy menstrual bleeding. These include:
– Polycystic ovaries
– Inflammatory diseases of the pelvic organs
– Underactive thyroid gland
– Polyps of the cervix or endometrium
– Intrauterine contraceptives