Lotte Hoel suffers from a diagnosis of endometriosis

On January 1, Lotte Hoel (35) from Trondheim will post a series of photos Instagram. At first she stands on all fours and cries.

– I have never given birth myself, but the doctors at the hospital say the pain can be compared to a birth, Hoel tells Dagbladet.

The pain is overwhelming. And they last. Long.

– I can get so sore that my teeth chatter and my body trembles. I can lose consciousness, I vomit. The pain usually lasts from ovulation until I have finished my period, the 35-year-old explains.

– I have tried absolutely everything. It takes your life.

One in ten is affected

One in ten women suffers from endometriosis, and Lotte is one of them. The diagnosis means that tissue similar to that in the uterus grows in the area around and on the uterus. Where it does not belong.

Before, Hoel had open admission to St. Olavs. This means that she could call them and say “now I have to go for a walk”, then there was a bed and a nurse ready to receive her.

There have been many doctor and hospital visits to Hoel throughout.

As an 18-year-old, she ended up in the emergency room due to the pain. Then she had been in the fetal position every month since she had her period for the first time as a 12-year-old.

Hoel has since had two peephole surgeries at the hospital. Then the surgeon goes in and removes the tissue that grows outside the uterus.

The problem is that the tissue always comes back.

– The first time it helped in seven, almost eight months. The second time I had surgery, in 2018, it took less than three months before the pain returned.

Appears with “invisible” disease

Chronic disease

When Lotte Hoel was a teenager, she had no one she could talk to about the pain. She therefore believed for a long time that what she experienced was normal.

– As health professionals, we often meet young girls in an extremely desperate situation, says chief physician at Oslo University Hospital, Guri Majak to Dagbladet.

She is a specialist in, among other things, women’s diseases.

Majak says the pain they experience with endometriosis can be very inhibiting.

– Endometriosis can behave differently from person to person. But for many, having endometriosis means long-term and chronic pain, says Majak.

Do not remove uterus

There are various palliative treatment methods for patients with endometriosis.

Some people use contraception to keep the pain at bay. As mentioned, it is also possible to remove the tissue by peephole surgery. Removal of the uterus and initiation of early menopause are also options.

For Lotte Hoel, peephole surgery did not help. Hormone contraception she reacts poorly to, and she has so far been refused questions about having her uterus removed.

– I am not allowed. It is such a drastic step and such a big choice to make. I think it’s incredibly sad, but I also understand that. At the same time, I can not imagine taking care of a child in the condition I am in now, says Hoel.

– We want to choose the treatment method with the greatest effect and least side effects. Hormone prevention and peephole surgery come first, and artificial menopause is only an option when other methods have been tried, says chief physician Guri Majak.

Thank you husband

Hoel was working in an orphanage and as a security guard for a long time, but for the last six years she has not been able to work.

– I do not have a chance. I have always been very active, have been in full time work and trained a lot. Now I feel that I am not a real part of society, says the 35-year-old.

She is on strong painkillers to cope with the diagnosis.

– I have never been anything fond of taking medication, but in the end it came to a point where I had no other choice. Together with my husband and a fantastic GP, they are the ones who make me survive this, she says.

Hoel tells about her husband Eirik, who helps her breathe steadily and who carries her to the toilet if she is unable to walk. About fishing trips and experiences the couple fills the good days with.

– Without him, this would not have happened at all.

Got monster bill: – Can lose everything

Scary to hope

Lotte Hoel has no faith that her situation will improve.

– I have forced myself to accept that the situation is as it is.

Trønderen says she is gradually hoping that there will be some research or new medicines that can make the situation better for those with endometriosis.

– But I kind of dare not quite hope either. Think if it does not happen.

What Hoel wants now is for young girls with pain to be taken seriously.

– I think there are many young people out there who are in pain, but who are not heard when they try to speak out. It takes an average of seven years before you are diagnosed with endometriosis. It is completely behind target.

Chief physician Guri Majak says good dialogue with endometriosis patients is very important.

– It is important that they feel heard. We believe that good teams around patients with such pain can do a lot.

Do you have a similar story, or did this issue make you think of something you want to share? Then you can send an e-mail to journalist [email protected].

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