The body breaks into a cold sweat and curls up in the fetal position. The pain spreads from the stomach to the whole body. A sensation of repeated stabbing between the hips. Painkillers help little. You try to breathe through the worst waves. For some it lasts a day or two. For others, the pain lasts for weeks. Josefine (left) and Selma (right) received very different treatment when they sought medical attention. Photo: Ismail Burak Akkan – I feel I know less about my body now than before I got the diagnosis, says Selma Staaf Pettersen (23) and lets out a small sigh. Little sister Josefine (20) looks away at her. Within five months, they were both diagnosed with the same chronic disease. But the sisters were to experience very different treatment at two different hospitals in Eastern Norway. It took 12 years before older sister Selma found out why she had inhuman pains in her stomach every month. At Akershus University Hospital in Lørenskog, the doctors were able to tell the 23-year-old in January 2022 that she had endometriosis. In May of the same year, little sister Josefine was diagnosed with the same disease at Ullevål Hospital in Oslo. Facts about endometriosis Endometriosis is a condition where tissue similar to that in the uterus grows outside the uterus. It takes an average of seven years to be diagnosed. It is usually detected during peephole surgery Because the symptoms can be very different, misdiagnosis is common Common symptoms can be pain in connection with menstruation, heavy bleeding and fatigue Endometriosis occurs in up to ten percent of women Among women who cannot have children, the occurrence is more frequent , with cases in up to 50 percent The tissue can grow on the fallopian tubes, ovaries, peritoneum, intestines, ureter and bladder The most common form of treatment is peephole surgery and contraceptives such as birth control pills or spirals Sources: The Endometriosis Association and NHI The drive between the two hospitals is short 22 minutes. Nevertheless, the follow-up they received was very different, the sisters believe. – When Josefine told me about her visit to the doctor, I was initially very happy that it went well. Then I started sobbing. The contrast between our experiences became so clear, says Selma. One in ten Up to 10 per cent of all women have what Norwegian Health Informatics calls “symptomatic endometriosis”. In addition, endometriosis is detected in one in five women who undergo abdominal surgery for other reasons. Approximately half of all women who struggle to conceive have endometriosis. Nevertheless, only 1.6 percent receive the correct diagnosis. Research from Aarhus University shows this. Despite the fact that the disease is so widespread, there are big differences in how the patients are followed up, says head of the Endometriosis Association, Elisabeth Larby. It was these differences that affected Selma and Josefine. Head of the Endometriosis Association, Elisabeth Larby. Photo: Ane Undhjem Løvereide / Endometriosis Association – Endometriosis is a very complex disease. We see that many girls and women go to their local doctors and hospitals, where there is not necessarily enough knowledge about the condition. The association wishes to partially centralize the treatment. Larby believes that this will lead to a better offer for the entire patient group. She has Selma on her side. – I really wish there were good, standardized routines for the treatment of endometriosis in Norway, says the 23-year-old. This summer, a committee, on which the Endometriosis Association sat among others, delivered a bundle of advice to the Norwegian Directorate of Health. The aim was to improve the offer for patients with endometriosis. These were on the committee Representatives from the four health organizations The Norwegian Medical Association Norwegian Gynecological Association Norwegian Association for General Medicine Norwegian Association for Pain Medicine Norwegian Anesthesiological Association Endometriosis Association Norwegian Women’s Sanitation Association Among the recommendations was to create a national expertise service, as well as create national guidelines for treatment. The work was initiated by the Directorate of Health, commissioned by the Ministry of Health and Care (HOD). The advice that was sent from the Norwegian Directorate of Health to HOD surprised the committee. – In its summary, the Directorate of Health has significantly changed our wording. We were much clearer in what we wanted, says Guri Majak, who also sat on the committee. Senior doctor at the gynecology department at Ullevål Hospital in Oslo, Guri Majak. Photo: Kristin Granbo / news She is a senior physician at the gynecology department at Ullevål and works a lot with endometriosis patients. She fears that the responsibility for improvement will be pulverized. In our neighboring countries the situation is quite different. – Centralization for good In Finland, there are separate departments for endometriosis at each and every university hospital. In Denmark, there are two hospitals with their own teams specializing in the disease. In Sweden there are four. There are none in Norway. Gynecologist Matts Olovsson at Uppsala University Hospital. Photo: Ismail Burak Akkan / news Under oblong, hospital-white fluorescent tubes, gynecologist Matts Olovsson sits and talks. To the sound of low humming from the lights, he talks enthusiastically about the endometriosis clinic he co-founded in 2009. The centre, located at Uppsala University Hospital, was the first of its kind in Sweden. – We have four clinics that can perform advanced endometriosis surgery. In addition, there must be separate teams at all women’s clinics in the country, he says. Today, the center consists of, among others, four gynaecologists, a pain specialist, a curator and sexologist, midwives and a physiotherapist. Together, midwives, doctors and gynecologists make up the team at the endometriosis center at Uppsala University Hospital in Sweden. Photo: Ismail Burak Akkan / news Centralization of knowledge and experience has benefited everyone, says the gynecologist. – Patients with endometriosis have a wide range of complaints and challenges. Our level of knowledge is completely different from that of a single doctor, says Olovsson. When Selma and Josefine talk about their symptoms, the list becomes long. Both say that they get tired quickly. Selma has been investigated for both diabetes and ME, but has neither. – The exhaustion and tiredness comes in waves that follow the cycle, says Selma. – I get very grumpy, too, says Josefine. – It is tiring to be so tired over time. It makes me sad, explains the 20-year-old. In Sweden, there has been an endometriosis center since 2009, when Matts Olovsson opened the first one at Uppsala University Hospital. Photo: Ismail Burak Akkan / news Josefine also has a lot of pain in her stomach outside of menstruation. There are few days when she has no pain at all. New research from Denmark shows that only one in five who are diagnosed with endometriosis receive treatment quickly enough to avoid physical and social problems. In Norway, Selma is one of those who did not receive treatment in time. Pain for generations When Selma and Josefine were growing up, severe pain during menstruation was quite common. Their mother had it when she was young. The grandmother had the same. – In our family, we were just in so much pain, sort of. Paintings made by Josefine, displayed in the bedroom. Photo: Ismail Burak Akkan When Selma finally went to the doctor, it was therefore not due to period pains. The 23-year-old struggled with repeated urinary tract infections and renal pelvis infections. Last year she was in and out of the emergency room all summer. On 19 January, Selma finally got an appointment for surgery at Akershus University Hospital. By then she had been in extreme pain and had been waiting for follow-up for over half a year. She had also feared that the cyst would burst. At the bottom of the case, you can read the hospital’s response to Selma’s accusations. When she was put on the operating table, no one still suspected that the 23-year-old had endometriosis. The shock message The operation was intended to last just under 30 minutes. But it will take four hours before Selma wakes up. The doctors were not prepared for what they would find in her stomach. The 23-year-old was full of endometriosis. Selma got her period when she was 11. It wasn’t until she was 23 that she was diagnosed with endometriosis. Photo: Ismail Burak Akkan Her right ovary, where the cyst was located, had fallen in front of the uterus and grown solid. The endometriosis tissue had also grown together her uterus and rectum. There was endometriosis tissue on and around the intestines. There was also suspicion of tissue around the ureter and the kidneys. Getting the diagnosis was one thing. What Selma reacted to the most was how the doctors communicated the messages that were given, when she woke up from four hours under anaesthesia. Selma has always had a great desire to become a mother. With endometriosis and a blocked fallopian tube, it can be difficult. Photo: Ismail Burak Akkan The 23-year-old received messages about amounts of endometriosis on her internal organs, that her left fallopian tube was blocked and that she had to start birth control pills. Selma has always had a great desire to become a mother. A blocked fallopian tube and endometriosis can make natural conception, or pregnancy in general, difficult. She also learned this soon after she had woken up. – I was in a daze and drugged, and received quite horrible messages. – When I asked about challenges with having children, I was told that there is nothing to do with it now, as I am not trying to get pregnant right now, says Selma. Josefine (th) big in front of older sister Selma in the apartment they share in Oslo. Photo: Ismail Burak Akkan / news She is afraid that the disease will make it difficult to get pregnant in the future. – I have known about the diagnosis for almost half a year longer than Josefine, but she still knows far more than I do. I tried to get an answer to what is happening to my own body, but I didn’t get it. Josefine says that she got answers to all her questions and concerns when she was at Ullevål. – Sad for everyone involved Selma’s mother, who is herself a nurse, sent a complaint to A-hus on behalf of her daughter a month after the operation. The hospital therefore called Selma and her mother to a meeting. There they talked about the treatment Selma received, and what kind of assessments were made before, during and after the operation. At the same time, Selma asked to be transferred to Ullevål Hospital in Oslo. – A couple of days later I received a letter in the post in which they apologized. In the letter, which news has read, it says, among other things: In Selma’s operation note, it is stated that there is suspicion of endometriosis tissue around the ureter, and that this may be the reason for the frequent renal pelvic infections. She was actually supposed to be called in for follow-up at A-hus in April this spring. It was postponed until May, but did not arrive then either. Now she has an appointment at UIlevål in September. Selma feels disempowered in her meeting with the healthcare system. Photo: Ismail Burak Akkan Selma is clear that she believes both the doctors and nurses who treated her wanted to help. This is not criticism aimed at individuals, she emphasizes. – To put it bluntly, you can say that they want to help, but can’t. I want help, but I don’t get it. It’s just sad for everyone involved, she says. Selma says that there was a period when she could not bear to look at herself naked in the mirror. She gestures to her stomach. – I wanted nothing to do with this part of my body. – I feel I lack ownership over my own body. Something was ripped away from me, in a way. For a period Selma could not bear to look at herself naked in the mirror. She couldn’t bear to deal with her own body. Photo: Ismail Burak Akkan news sent some of the claims from Selma to A-hus. Pernille Schjønsby, director of the Women’s Clinic, answers as follows: – The Women’s Clinic aims to provide good and proper treatment to all our patients. Feedback from patients gives us the opportunity to improve. Patients have options for complaint processing with the State Administrator/Health Inspectorate, the patient and user ombudsman or by contacting the Women’s Clinic directly. We do not wish to comment on this individual patient in the media, writes A-hus in an email. Hi! If you have thoughts about this matter, or suggestions for other matters I should look into, please send me an e-mail.
ttn-69
The invisible pains – Special
