Woman with Endometriosis Travels to Romania for Surgery Due to Lack of Expertise in Norway

For eight years, 35-year-old Kristine Lindebø has occasionally had pain in her stomach, back, legs and abdomen. In a post on Facebook, she describes, among other things, the feeling as stabbing, burning and burning. The whole thing has been so bad that it has put her on sick leave for a long time.

The visits to doctors, specialists, gynecologists and surgeons did not provide answers. Excluding different foods from the diet, or reintroducing them again, did not help either.

It wasn’t until one and a half years ago that Lindebø herself suggested to her GP that she might be suffering from the disease endometriosis, that an investigation into this was initiated.

After having MRI images analyzed by a specialist clinic abroad, it became clear that Lindebø had both endometriosis and adenomyosis, which is the presence of endometriosis tissue inside the uterine muscles.

According to one supervisor in gynecology, published on the Norwegian Medical Association’s website, ten percent of women of reproductive age in the world are believed to have endometriosis, while 20 percent of adult women are estimated to have adenomyosis.

– Indicates a system failure

After walking with pain in her body for such a long time, Lindebø chose two weeks ago to travel to a clinic in Romania, to be operated on for the disease.

It was a decision that did not come naturally to her.

– I had never in my life imagined going to Romania to have an operation, not even half a year ago I could have thought that it would happen. I’ve never operated before, nor been under anesthesia, so it’s special to travel to another country to do it, says Lindebø on the phone from Romania.

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She says that she went to the clinic because of the expertise they have there, which she believes is lacking in Norway. It gave security. She also praises her partner for being with her throughout the journey, and for taking good care of her after the operation.

Lindebø believes that knowledge about endometriosis and adenomyosis is generally too poor. As an example, she says that the disease is too strongly linked to painful menstruation. She has not experienced this herself.

The 35-year-old feels that all the doctors she has met over the past eight years have taken her seriously, but that her story may indicate a bigger problem.

– The fact that nobody was able to see the connection, or to think that I could have one of the most common women’s diseases, indicates that it is a system failure, rather than a failure of the individual doctor.

Take the bill yourself

For the time being, Lindebø has had to cover the costs associated with the trip and the operation himself.

She will apply to Helfo to cover the costs of the operation, since Romania is in the EU and she has a referral in Norway. It is estimated that she has spent NOK 90,000 on everything in connection with the stay and the operation.

– I am prepared that there may be a refusal. In any case, health is worth much more than that money, says Lindebø.

She also believes that it is burdensome that it takes so long to get help, as it did in her case.

– It is a social problem, there are many women who have to leave the working life because of this, and also lose much of their social life. There are many people who simply do not get to live a dignified life.

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Think old knowledge confuses

Mette Haase Moen is MD, specialist in obstetrics and women’s diseases and professor emerita from the Department of Clinical and Molecular Medicine at NTNU.

She is also an international ambassador for the World Endometriosis Society. Moen believes that many GPs do not suspect endometriosis in younger women, due to outdated knowledge.

– Many GPs don’t think about endometriosis, because in the past we thought that women had to be closer to 30 before they got it. Now we have experienced that even younger women get it, says Haase Moen to Nettavisen.

On average, in Norway, it takes between five and seven years before a diagnosis of endometriosis is established, and part of the reason for this is that there is a smooth transition between normal menstrual pain and pain caused by the disease.

– In most cases, the diagnosis can only be made by peephole examination, also called laparoscopy under anaesthesia.

Birth control pills and other hormone therapy can help with the pain. It did not, however, when Kristine Lindebø tried the contraceptive injection as treatment.

– If you don’t get better from going on hormones, or if the pain interferes with participation in, for example, school, sports or social life, you have to think about endometriosis, says Haase Moen.

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Haase Moen also believes that the expertise in treating endometriosis is good in Norway, and that we only have to seek help abroad in very special cases. Norwegian professionals then have good contact with an expert center in Switzerland, she explains.

– It is also important to spread knowledge about endometriosis in the Norwegian population, says Haase Moen in conclusion.

The Ministry: – It makes an impression

The Ministry of Health and Care has been informed about Lindebø’s situation. The ministry has been asked to be interviewed in connection with the case.

They do not, but State Secretary Karl Kristian Bekeng nevertheless speaks out in an email to Nettavisen. There he writes:

– It makes an impression when women with endometriosis say that they do not get enough help and treatment. The health service must listen to the women’s experience of pain and discomfort, and meet patients with respect and consideration.

Bekeng says that the ministry has taken the initiative to improve the services offered to girls and women with endometriosis and adenomyosis, and that this year the Norwegian Directorate of Health will give professional recommendations on investigations, treatment and follow-up.

– They must ensure that information is available on, for example, the website ung.no and helsenorge.no. The government has also strengthened and changed the funding of the GP scheme from 1 May. By doing so, we ensure that patients with great need will receive better follow-up.

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Bekeng also writes:

– The regional health organizations are also now considering how endometriosis expertise can be strengthened through professional networks and regional interdisciplinary teams. They are considering establishing a national expertise service and centralizing the surgical treatment of the most advanced cases.