Updated 12.15 | Published 12.11
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Endometriosis is not just one of the world’s most painful diseases.
Society also has to pay when cure is missing and research is underfunded.
– I have done 18-19 peephole operations, two abdominal cuts and five vaginal punctures, says Suzanne Flodén, endometriosis patient for almost 40 years.
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They live with endometriosis: “have not received help”
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SEK 3.6 billion.
So much is estimated to cost society every year, according to a study published by researchers at Uppsala University.
Every patient that requires specialist care costs 90,000 each year. This includes SEK 50,000 in direct care costs and SEK 40,000 in costs for increased sick leave and loss of work.
Facting happened to the promises?
“A larger investment is being carried out aimed at more equal care, women’s diseases and research on women’s illnesses and health. Young women should not have to accept that it is normal to live with pain. A special investment is made in care for migraine, endometriosis and menopausal care. “
So it sounded in Ulf Kristersson’s first declaration of government October 18, 2022.
Aftonbladet examines what has happened since then.
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Full screen Photo: Lotte Fernvall
Hundreds of doctor visits
Suzanne Flodén, 56, in Svedala is one of Sweden’s around 250,000 endometriosis -affected women. Her journal is learning to place her in the absolute top tier in terms of interventions and treatments since she first sought care in 1987.
Only operations and vaginal punctures, where cysts are emptied, amount to around 25. Add hundreds of doctor visits, emergency visits and treatments.
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Full Screen Suzanne Flodén has been the endometriosis patient for almost 40 years. Photo: Lotte Fernvall
She has done a hysterectomy where the uterus was removed, and at a later date, ovaries, fallopian tubes and uterus were also removed.
– I have plenty of abdominal gears. The disease itself creates cohabitation, but even every surgery can cause together and consequential problems, says Suzanne Flodén.
– Over the years I have tried every hormone therapy that exists.
Although it has been 20 years since the hysterectomy, Suzanne received new endometriosis just a couple of years ago. She learns the pain she experiences.
Since 2019, she has been forced to be on sick leave at half -time for her chronic pain, where society is responsible for costs. After all, she still manages to work 50 percent as a preschool teacher.
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Full screen “Over the years I have tried every hormone therapy available.” Photo: Lotte Fernvall
– I’m always in pain. But I feel as good as you can expect. The pains do a lot with my energy and they still come in a kind of forest.
“May have chronic pain”
Matts Olovsson, initiator and former head of the Endometrioscentrum at Akademiska in Uppsala and one of Sweden’s leading endometriosis researchers, well recognizes the fate as Suzannes.
– You can have endometriosis without hurting, but you can also have great pain. And if you have a long time, you can develop a chronic pain. Then it is a diagnosis and illness in itself, which does not necessarily depend on the endometriosis anymore, says Matts Olovsson.
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The full -screen dometric researcher Matts Olovsson. Photo: Lotte Fernvall
By investing more money on research on the causes of endometriosis, or in better and faster ways to discover and treat endometriosis, society could save money, according to Matts Olovsson.
– I would like to see you invest in a good and cheap diagnostic test that you can use in teenagers. As far as the treatment side is concerned, we are really completely referred to hormone treatments, and hormones may not be that everyone feels particularly good, says Matts Olovsson.
Ulf Kristersson has declined to comment on the researchers’ criticism. He refers to Minister of Health Acko Ankarberg Johansson (KD), who left a written comment.
She believes that responsibility falls on the regions that prioritize how funds are distributed.
“I hope that more regions put this as high on the agenda as the government does,” writes Ankarberg Johansson, whose entire statement can be read in the fact box below.
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HELSKRUSULF Kristersson promised to invest in endometriosis in the government declaration in 2022. Photo: Filip Meneses
The commentary comment
The care for women and girls has long been neglected and it needs to be developed to become person -centered, safe, equal and accessible. Knowledge must increase about the illnesses and conditions that mainly affect women and girls. It is an important issue for equality.
This government prioritizes and uses the instruments it has to strengthen the care for illnesses and conditions that mainly affect girls and women, but since we do not have state care, it is up to the regions to decide what priorities should be made and how much funds are to be set aside in different areas. Your review shows that more needs to be done in the research and care of endometriosis. I hope more regions put this as high on the agenda as the government does.
The government is investing heavily in healthcare capacity in general and increased primary care and allocates a total of just over SEK 11 billion for this in 2025. In addition, to clarify the importance of this particular area, the government is investing in women’s health and childbirth care.
Investment in care for endometriosis is a very important issue for me and the government and the government have therefore taken several measures to improve the care for endometriosis. Since the start of the term of office, we have carried out several different efforts to strengthen the care for women, including through assignments to authorities, budget efforts and investment in the research and innovation bill.
In order to further strengthen the care for endometriosis, it is clarified in the agreement between the state and Skr in the area of childbirth care and women’s health for 2025 that funds may be used to create clear care chains and referral paths for eg. Endometriosis and for implementing the National Board of Health’s national guidelines for care in endometriosis.
Acko Ankarberg Johansson, Minister of Health (KD)
Read Merkt Facts: endometriosis
• Endometriosis is a lifelong disease that affects every tenth woman of childbearing age – and who currently lacks cure.
• Endometriosis means that there is the uterine mucosa outside the uterus, such as the lower abdomen, ovaries or fallopian tubes, bladder and rectum.
• Disorders may include abundant bleeding, pain when you pee or poop, fatigue and nausea, pain far into the vagina during sex and difficulty getting pregnant.
• Today, the average age of those who receive an endometriosis diagnosis is 37. Although the majority of those who are diagnosed with endometriosis say that the symptoms began before the age of 20.
• This means that many do not receive the care and treatment they need. One in four affected is under -treated.
Source: The National Board of Health and Welfare.
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