Louise about living with endometriosis: “The disease is in control, not the patient”

Louise has a severe case of endometriosis, which means her body is worn out after years of extreme pain and symptoms. Read how she lives with endometriosis and how she tries to break the taboo that surrounds it.

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31. juli - 2022

First, can you tell us a little bit about yourself?

I’m 44 years old, mother of Irene aged six and Buster aged three. I’m married to Martin. I’m a journalist and was a handball commentator on DR TV Sport in Denmark for many years. At the same time I was also a radio host on the sports programme LIGA on P3. Today I work at P4, where I both plan the programme and host. I’ve been working for Danmarks Radio for almost fifteen years now.

You suffer from endometriosis. Can you explain what that means?

It means that for many years I have been plagued by extreme menstrual pain. And eventually it wasn’t limited to the cycle anymore, because my body was so worn out by the severe pain and symptoms of endometriosis. That’s why I live with chronic pain that I can’t get rid of which dictates my daily life.

Endometriosis is a very debilitating disease, which can significantly reduce an individual’s quality of life, because the disease is in control, not the patient.

How did you discover you had endometriosis?

I went to a gynaecologist in my late twenties because I was tired of my periods taking up so much of my time. Pain and discomfort were constant factors and I had to plan very carefully when my period came. There were many things I was unable to do. I had no idea it was a disease, but there were definitely some things that fell into place with the diagnosis. Even more fell into place when I was examined by specialists.

Has it been a constant factor in your life since you started menstruating?

It has definitely escalated over the years. It got really bad when I wanted to have children and a healthcare professional suggested I stop taking the pill. Now I know that the hormones in the pill were a protection, but back then I believed the advice I was given, although I shouldn’t have done, because untreated endometriosis can take over completely. Which it did in my case.

What is life with endometriosis like for you and are you aware of it every day?

For me, life with endometriosis is a carefully planned schedule. My illness means that I have to make a multitude of choices every day. I have to eat a certain way, I have to do the right exercise and I have to have a lot of breaks - both physical and mental. So, my life is planned down to the smallest detail and everything is aimed at making me feel as comfortable as possible with the disease.

It’s a constant search for the best balance for me and also for my family.

The disease sets the agenda for us every day. I refuse to be cowed, but I have accepted that if I don’t play by the rules of endometriosis, it will rule everything I do in my life. Therefore, it’s a better solution for me to adapt to the vagaries of the disease, so that I have as much freedom as possible.

Have you undergone treatment and operations?

I came into contact with the specialist department at Rigshospitalet very early in my first pregnancy and they have kept an eye on me ever since. After I had my second child, for my best interests, we began a targeted course of treatment. Without Rigshospitalet I don’t dare think where I’d have been today.

I underwent a very major operation in the autumn of 2021. They removed some endometriosis and I had a full hysterectomy. I was subsequently off sick for six weeks. Today I feel better, but I don’t really feel on top of things yet. The doctors say it will take a long time, because it was such an invasive operation. So I’m being patient.

Have you had children without help or through fertility treatment?

I have had both my children with fertility treatment.

Quite early in the process, my fertility doctor said I would never have children, either naturally or by insemination. I was quite simply too sick for that.

Both my children are therefore IVF children, but I had two children from one egg retrieval and with five viable blastocysts, so I have been very lucky. Much luckier than most endometriosis patients with fertility challenges.

What has the diagnosis meant for your life and in particular, your quality of life?

The diagnosis has meant that I cannot live my life as I did ten years ago. There are too many issues I have to take into account. I can’t do what I want to do either, because the disease is so restrictive. I’ve also had to make changes in both my circle of acquaintances and in my social life.

You’ve been very open about the diagnosis. When did you decide that?

On the advice of my psychologist, I sat down and wrote about my process. Being severely affected by endometriosis is quite an intense experience and you don’t imagine in advance how much the disease will consume your life.

As I wrote, I could see a story unfolding. I had personally lacked information on the subject when I was most ill, and I could see that what I wrote might benefit and help others.

And so the decision wasn’t really that difficult. Too many women feel lonely when diagnosed with endometriosis and I think that’s sad. So, if to some extent I can help some women feel less alone, it’s worth it.

Opening up about it publicly has made me realise just how huge a problem endometriosis is in our society. Since publishing my book, I have received a lot of personal messages from other patients telling their story, or just saying thank you. It’s incredibly heartbreaking and yet life-affirming at the same time.

Have you tried any crazy things you read about in the hope they would help you?

You bet. I have been through many different alternative treatments. I have taken dietary supplements and I have searched and searched the internet for methods that could ‘cure’ my condition.

What has helped and is still helping you - both in terms of pain, but also psychologically?

When I changed my diet to an anti-inflammatory one, I experienced a huge difference for the first time. It was as if my body became more itself again. I was no longer bloated and wrecked by food. Instead, the diet meant I could take a bit of control. In addition, my hot yoga is indispensable to me. I can’t really understand how I got through the days before I started it.

What has it been like for your partner to be with you during your illness?

My husband talks about how it’s very hard mentally to stand on the sidelines and watch the one you love in so much pain. At the same time, of course, the fact that the disease dictates so much in our lives is also exhausting for him, because it also affects his time. On the other hand, there is nothing he enjoys more than when I say I feel okay, because we have experienced so many times when I have felt terrible.

What can a partner or close relative do to provide support and help in the best possible way?

The first thing to do is listen. It’s also important to believe what the woman is saying, no matter how crazy it sounds. Because endometriosis is crazy. It’s also a great help if those close to you help you persuade the health system to get you the right help quickly, instead of constantly being sent home, or to the wrong place.

You have been at the forefront for all women suffering from endometriosis - what has the response been like?

Overwhelming and devastatingly moving. We have a group of women who want to stand together and want to persuade politicians and other people in power to change a hopeless situation. But we are also a group of patients with very little strength, because we are so drained by a disease that eats away our energy.

On the other hand, I get SO much energy out of knowing that they’re right behind me. So, I’ll keep fighting and shouting (inappropriately) loudly on behalf of all of us.

Tell us about the book you have written about endometriosis.

It was initially a self-therapeutic process. I needed to know what happened and when, because I was suddenly looking back at a process that I couldn’t really get my head around. When I wrote it down, I could see that my story was almost classic storytelling and it only became a book once I was finished. Because, before I wrote the final full stop, it was mostly for my own benefit. It makes me so happy that others are benefiting from it. That was its main purpose.

What would you say to a young woman with painful periods or even the diagnosis?

First of all, I would say, listen to your body. If you feel something is off, then you are most likely right. Seek help from the endometriosis association or other places where you can find other patients. A reflection is usually the best way of feeling certain. And then you have to insist on everything you have the strength for. It’s so hard to be affected by endometriosis. It’s a hideous disease. But you’re not guaranteed understanding and a helping hand in the healthcare system as it is today. So, if you have a suspicion, it’s important you insist on being seen by skilled specialists. I know it’s a lot to ask, as you’re certainly drained and worn out by the illness, but in the long run it will help you get help as soon as possible.

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