Endometriosis care – Sahlgrenska brings together and leads the work

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.

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.

“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 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.

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.

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