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Battling Endometriosis: Woman Walks Length of Norway to Raise Awareness and Funds

AT ZERO: – I have had to use the rest days to recover from minus and up to zero, says Karlsen about the energy level. Photo: Mari Cathrine Karlsen / Private

Only three months after the operation, Mari Cathrine Karlsen stood on the Nordkapp, ready to walk the length of Norway. – It is a matter of my heart.

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  • Mari Cathrine Karlsen (27) was diagnosed with endometriosis in 2021 and underwent surgery in April
  • Three months after the operation, she began her trip to walk the length of Norway, with the aim of collecting NOK 500,000 for the Endometriosis Association
  • After the trip, she has collected almost NOK 140,000 and will continue her collection until Christmas
  • Karlsen wants to spread knowledge and commitment about endometriosis, which affects 10% of women in Norway
  • The money collected for the active splice goes to the Endometriosis Association, and is seen as an enormous strength for the association

Sea view

In 2021, Mari Cathrine Karlsen was diagnosed with endometriosis. After 10 years with the disease.

After a long and frustrating process, she had an operation at the beginning of April.

Three months after the operation, the 27-year-old from Lier set off on a trip across Norway, with the aim of collecting NOK 500,000 for the Endometriosis Association. Including more health rights and better treatment options.

– There is so much of the motivation behind it. I feel it is a matter of my heart, she says.

The trip has offered both ups and downs. Karlsen has fought through severe abdominal pain and fearful moments.

Info

What is endometriosis?

In some women, tissue similar to the lining of the uterus is found outside the uterus. The tissue can grow on the fallopian tubes or ovaries, peritoneum, intestines or bladder.

The most common places to find endometriosis are in the pelvis, around the ovaries, fallopian tubes, outside the uterus, and the area between the uterus and rectum. Endometriosis can also be found on the bowel, bladder and vagina.

If the tissue that is normally inside the uterus grows into the muscle wall of the uterus, this is another condition called adenomyosis.

Endometriosis can also grow in scars from previous surgeries. In rare cases, endometriosis can be found elsewhere in the body such as the navel, lungs and urinary tract. Endometriosis is a chronic disease that can affect the entire body.

Source: Endometriosis Association (endometriose.no)

Show more CROSSING THE FINISH LINE: Mari Cathrine Karlsen reached the finish line in Lindesnes after 4.5 months on a trip across Norway. Photo: Mari Cathrine Karlsen / Private

Long way to help

Karlsen can remember pain all the way back to high school. With a message book full of messages about stomach aches, she realized something was wrong.

– In high school I was sent to the emergency room three times, says Karlsen.

Neither she nor the doctors understood where the pain was coming from. Later it turned out to be endometriosis.

DRASTIC OPERATION: Many are unable to go to the bathroom or move shortly after endometriosis surgery. Photo: Mari Cathrine Karlsen / Private

2020 was the worst year she has experienced. When she finally couldn’t stand upright behind the counter at the flower shop she worked in, she took matters into her own hands.

– I have gone to several GPs who have never understood having period pains and things like that. But a GP in 2020 believed me when I told how bad I was. He gave me a referral to the hospital right away, says Karlsen.

When she arrived at the hospital, she was met with a completely different answer than what she expected.

– Unfortunately, I was not believed there. The doctor literally said “I know you don’t have endometriosis. Even if you think so”.

But Karlsen did not give up, and three months later a tissue sample taken at the hospital in Drammen confirmed that she had endometriosis. Karlsen still had to wait for a possible operation, and was put on treatment with new birth control pills with estrogen and gestalgen. This was done in the hope of reducing the pain, but it only got worse.

After a year of waiting, Karlsen had an operation set up at another hospital, where all the endometriosis was removed.

OPERATION: On 5 April, Karlsen was at the hospital after surgery. Photo: Mari Cathrine Karlsen/ Private

The 27-year-old is strongly critical of the fact that Drammen Hospital did not want to operate. In an email to VG, they write that they followed national routines in their treatment of Karlsen:

– National routines state that gynecologists should aim for the fewest possible operative interventions for endometriosis, and the department at Drammen Hospital is usually restrained, and tries to operate on the patient only once in their life, writes Hege Frostad Dahle, head of department at Vestre Viken Health Corporation, who adds to the fact that they are happy that Karlsen has suffered less after his operation.

– Bleeding for a week

Despite the fact that Karlsen did not completely get rid of the pain, she was still determined that the trip should be carried out. She was still somewhat surprised that she should fear for her life along the way.

– You have no idea what you will encounter when you go out into something completely unknown. For example, when you have to cross some rivers and have water up to the middle of your thighs. Or perhaps slip on the rocks beneath them.

The endometriosis also meant that she had to change the plan along the way.

– Due to pain, I had to cycle through Nordland and Trøndelag, instead of walking. I had been bleeding for a week, and then you are completely exhausted. You get extra endometriosis pain, and are bedridden. Then I had to relieve my body.

Sometimes the pain got really bad.

– Sometimes I have laid down in the fetal position in the sleeping bag. I’ve cried a lot, and it’s been tough. It also takes a toll on you psychologically to not have someone present to comfort you in the difficult times.

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PAIN: The trip has not just been a bed of roses, and there have been several difficult evenings. Photo: Mari Cathrine Karlsen / PrivatSMERTER: The trip has not only been a bed of roses, and there have been several difficult evenings. Photo: Mari Cathrine Karlsen / Private

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PAIN: The trip has not just been a bed of roses, and there have been several difficult evenings. Photo: Mari Cathrine Karlsen / Private

Several times – both during the planning – and along the way, Karlsen had doubts about whether she would make it to the finish line.

– It was always in the back of my mind that I have no idea how I am after the operation. Or if I manage to carry it out.

But 135 days after the nervous start at Nordkapp, only seven and a half months after she was in the operating bed, she crossed the finish line and reached Lindesne lighthouse.

Goes for those who can’t

The feelings she is left with after the trip are nevertheless good. The pain she has fought through, the human relationships and the response have made it all worth it.

– I have been invited back to Finnmark now. Completely open invitation only. People have invited me to stay overnight. I have had dinners. So I am primarily left with an incredible number of good memories. And an extremely high sense of mastery, says Karlsen, and continues:

– I have enough self-awareness to understand that this is completely extreme.

The thought of all women struggling with the disease has kept her going through the worst times.

HAPPY TO TRAVEL: Mari Cathrine Karlsen is happy to go for a walk. This trip was the most challenging she has gone on. Photo: Mari Cathrine Karlsen / Private

– When I’ve had a bad day in the tent or on a trip, I’ve thought: today I’m only walking for others who can’t make that trip here. I have to do it for them.

This way of thinking has not always been easy. But Karlsen has endured the discomfort. Even at her worst, she has seen the positive in everything.

– In a way, it’s not so bad to be sick on a trip in a tent compared to being sick at home and staring at the wall.

Uterus in inbox

Karlsen is not new to being open about her endometriosis journey. This is something she has wanted to spread knowledge about since she was diagnosed.

– It is a public health problem.

According to PEDIATRIC 10 percent of women in Norway are affected by endometriosis. This causes a lot of pain, sick leave and fertility problems.

Over the years of illness, several women have opened up about their stories. Both in real life and on social media.

– They just talk about their uterus, which is very touching. It is very vulnerable for many.

Big difference

After the trip, she has collected almost 140,000, but will continue collecting until Christmas.

The money collected for the still active splice goes to the Endometriosis Association. A 26-year-old organisation, which until recently was mostly run by volunteers. Last year they got their first employee in a part-time position, and this year the association has two employees.

Communications manager Ane Løvereide is impressed by what Karlsen has accomplished.

– That she, as a patient and a person, has thought “here I have to fucking do something”, we think is absolutely fantastic, says Løvereide.

They see the money she collects as an absolutely enormous strength for the association.

– It makes an incredibly big difference, and helps, among other things, to secure positions, which means that you can work on this full-time.

– As a newly operated patient with a chronic disease, I am still not well, says Karlsen. Photo: Mari Cathrine Karlsen / Private

Equal treatment

Løvereide works day in and day out to answer inquiries.

– The knowledge can certainly improve for many people, she says.

Every day, work is done to spread knowledge about the disease. To politicians, health personnel and individuals.

The aim of the association is to introduce guidelines that contribute to ensuring that everyone is treated equally and receives equal follow-up.

– Some patients can be extremely lucky, while others do not receive the same treatment at all.

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Published: 13.12.23 at 16:29

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2023-12-13 15:29:58


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