five years. Decade. fifteen years. It may take a long time before a woman with endometriosis is diagnosed. Already in adolescence most sufferers begin to have symptoms, but the average age when a woman is actually diagnosed is 37 years old in Sweden.
At the same time, it is estimated that about a quarter of a million people have the disease. Of these women, just over 1,000 have problems so severe that they have to undergo surgery for their condition. A few hundred are so sick that they need advanced surgery.
The latter is something that Akademiska in Uppsala, Skene University Hospital in Malmö, Södersjokhuset in Stockholm and Sahlgrenska University Hospital have been working on behalf of the National Board of Health and Welfare since 1 January this year.
– We and the other three hospitals have been formally mandated to administer highly specialized care for advanced endometriosis surgery. This means that certain operations may not be performed anywhere other than in these four hospitals, says Elva Strandberg, MD, director of endometriosis at Sahlgrenska.
But according to her, it is important to stress that surgery is not the first step in treatment or investigation – but the last.
In the case of menstrual pain that prevents a woman from living her life, regular treatment should be started. She says it means painkillers, hormones to get rid of menstruation, physical therapy, and more.
Elva Strandberg is the lead for endometriosis at Sahlgrenska and tells us that there is a story, unfortunately not quite over yet, that women in pain are not treated well and taken seriously. You think this is unacceptable. Photo: Paul Bjorkman
The epidemic has left its mark
The goal of centralization is for care to become more equal across the country. The day can vary greatly depending on where you live.
There will be fewer surgeons performing these operations, which hopefully will lead to better results and fewer complications, she says.
So far, work has gone well – although the pandemic has left its mark.
– Elva Strandberg says: We didn’t do almost any surgeries this spring, but we’re starting them now after the summer.
Sahlgrenska will perform an estimated 50 operations this year, but that’s a number the hospital won’t reach. The prognosis now is about 30 surgeries.
It can be compared to Södersjukhuset, where about 60 patients are expected to undergo surgery this year.
The exact number of surgeries each hospital receives annually is not specified. But patients from all over Sweden will be distributed among the four hospitals so that there are no long queues anywhere.
When someone has endometriosis, endometrial tissue grows outside the uterine cavity. This, in turn, can lead to inflammation, swelling and pain. Also scarring and destroying members.
Symptoms can vary – some resemble a urinary tract infection, some have so much pain during menstruation that they vomit and faint.
The disease also increases the risk of infertility and ovarian cancer.
Those treated for endometriosis usually receive pain relievers and hormonal medications, such as birth control pills.
In some cases, the disease leads to the need for surgery, among other things, to remove foci of endometriosis.
Endometriosis is a disease that affects approximately one in ten menstruating women in Sweden.
Source: 1177 and the National Council for Health and Welfare
“Women’s Pain Should Be Taken Seriously”
The assignment also includes an informational responsibility to disseminate knowledge about endometriosis in outpatient care.
The level of knowledge should take a real step forward, says Katharina Westmann, who is the chief medical officer in charge of the endometriosis clinic at Södersjukhuset in Stockholm.
It is especially about taking women’s suffering seriously.
Some doctors think their patients are annoying. Women may then be underdiagnosed for several years and have also sought care multiple times. It is rude not to take the pain of this group of patients seriously.
“I can think of it as failing healthcare,” she says.
Katharina Westmann is the chief physician in charge of the endometriosis clinic in Södersjokhuest in Stockholm. She has worked for many years with women with this disease and hopes that centralization will make endometriosis care more equal. Photo: Torkel Ekqvist Photo group Södersjukhuset
Katharina Westman, an endometriosis specialist for nearly 15 years, hopes centralization will eventually lead to fewer operations.
– If patients are diagnosed early, they will not have to experience the same suffering for several years, moreover, many will not have to undergo surgery. That’s because they started hormone therapy early in their lives and haven’t had time to develop such an advanced disease that would require surgery, she says.
Madeleine Saliou from Gothenburg was diagnosed in 2003. Throughout the year, she met healthcare professionals who did not take her illness seriously. Some said she had common menstrual pain or that the pain wasn’t real. Photo: private
I got the diagnosis after eleven years
It was 40-year-old Madeleine Salieu from Gothenburg who had to wait 11 years before being diagnosed. She has had over twenty peephole surgeries in which foci of endometriosis have burned away from her organs and she is now struggling to reach a new era.
– I applied for an emergency this summer and haven’t received any time yet. But she says I am fighting to get one.
In the meantime, you make sure to rest a lot, train your pelvic floor and do various relaxation exercises when pain arises. On some days, pain relief and morphine tablets are also needed when you are at their worst.
Do you think care has improved over the years?
– Unfortunately not. I don’t notice any difference at all today. Many have yet to prove themselves today for a proper investigation. But I hope the care is better so that women with endometriosis can be trusted immediately, says Madeleine Saliou.
Then you should ask for help:
* If you have severe pain during menstruation and regular painkillers do not help.
* When you are in so much pain that you have to stay home and not go to school and work and therefore get frequent absences.
* If your abdominal pain becomes chronic.
* Some people with the disease also experience deep pain during intercourse, or it hurts when they have a bowel movement.
* Problems with the urinary tract can be a sign of endometriosis.
Source: 1177 and the National Council for Health and Welfare
Read more: Sahlgrenska wants to get better at endometriosis
Read more: Severe menstrual cramps may be due to endometriosis
Read more: Amelia had endometriosis – but after surgery
Read more: Maja disease is widespread – wait 11 years to be diagnosed
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