Maria lives with endometriosis: “I have learned to listen to my body”

Endometriosis is a tricky disease that many women never discover they have until they try to conceive, while others live with chronic pain. Here, Maria shares her story.


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wawa fertility

01. august - 2022


About:

Maria Dam Kietz, 37 years old, living in Fredericia.

Self-employed as an Influent Manager at Collab Management.

Her self-employed life started after she was diagnosed with endometriosis.



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

Endometriosis is a disease that affects women. Approximately two out of eight women are believed to suffer from endometriosis, but a lot of the time it goes unnoticed. Most women discover it by an inability to conceive. Almost 50% of all women who experience difficulty getting pregnant are suffering from endometriosis - also referred to as ‘endo’.

Women can react differently to the disease. Some may have difficulty getting pregnant, others live in chronic pain and fatigue, while some have pain during menstruation or pain during intercourse. It’s very different from woman to woman and it’s generally a disease that many people (and even doctors) do not know enough about.

But common to the disease is that when you have menstruation, you also release a form of ‘mucus’, which settles on other organs outside the uterus. When you have your period, this mucus also reacts in the body, which can cause an incredible amount of pain and you can feel a kind of inflammation. Cysts are also a big part of the disease. And these cysts can explode, twist and sit in places that are incredibly uncomfortable. The disease is not only active during menstruation, but can cause chronic pain and chronic fatigue.


How did you find out you had endometriosis?

When I was 30, I had just entered a new relationship and began to experience more severe pain in my abdomen than I had ever experienced before. I have always had pain during menstruation, but it started to get more constant, so I went to see my doctor.

My doctor suspected swollen mucus membranes and I had to be examined by a gynaecologist. Luckily, I was covered by a health plan through my job and chose to go to a private hospital to be examined. There was an incredibly competent doctor who pretty quickly suspected that I had endometriosis, and within two weeks I was operated on for the first time.

They found endo in my abdominal cavity and in my fallopian tubes, as well as cysts. It should be said that this is far from the typical story of endo patients. Many women can go several years before doctors take it seriously and suspect endo. And then it can take years before they will operate.


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

I was always incredibly ill during my periods. I have always had to take painkillers to function reasonably and I’m often bedridden during the first few days of my period. But it was only when I got older that I started to be affected outside of my periods as well.


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

Unfortunately, I am one of those who is generally always aware of the disease. There are few days when I don’t have any kind of pain or fatigue. And when I have my period, I am (still) bedridden for one and a half to two days and work in bed, which fortunately I can do with my job.


It also means that I never plan to be on the go, have meetings or socialise on the days when I have my period.


In general, I think a lot about how I use my energy, because it is not infinite. So, those are constant priorities. On the bright side, it means that I’m always on top of everything, since I have to plan and prioritise my time and energy. I am often well ahead of things at work, so on my bad days I only need to take on the work that is absolutely necessary that day.


Have you undergone treatment and operations?

I’ve had surgery twice. The first time was when I was first diagnosed with endometriosis and then I had surgery again a few years later, when my endo had developed. I am currently not undergoing a course of treatment in the public sector healthcare system. It certainly works for many women, but for me these courses unfortunately don’t.


Have you had children? Either without help or through fertility treatment?

I was one of the lucky ones who could actually get pregnant naturally, despite being over 30 years old. And it went surprisingly fast for us. So, I have not been through fertility treatment. Although I was expecting it to be necessary and that it could take time for me to get pregnant.


What has the diagnosis meant for your life?

Being diagnosed with endometriosis turned my life upside down. First, I was faced with the dilemma of whether I wanted children. Because, according to the doctors, if I wanted to, I would have to ‘hurry up’, as the chances of doing it naturally were pretty slim. And the longer I waited, the more it would minimise the chances of fertility treatment.

After that, I had a hard time finding a balance between corporate life and having a chronic illness with at least one or two sick days a week. For one thing, it made being self-employed more attractive to me. I can work on my good days, manage my own working hours and then work from bed on the days my body is under pressure.

I have also had to get psychological help to become better at accepting being chronically ill and the effect it has on my daily life. Accepting that it’s fine that I can’t do everything all the time.



What has helped and is still helping you in your everyday life as a woman with endometriosis?

I have learned to listen to my body. I wasn’t good at that before. Doctors always recommend IUD and hormone treatment for the disease. But it didn’t work for me, as my body unfortunately reacts quite negatively to it. It is definitely the right thing for many women and you should always listen to the doctors you have around you. However, I have resorted to more alternative treatment, with the support of my own doctor.


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

It’s important to remember that they are also affected by living with someone who is chronically ill. So, generally, the best thing to do is listen and communicate. As a sick person, say how you are feeling, when you are feeling at your worst and what you need help with. But as a partner or relative, it’s also important to talk about what you can and can’t do for the patient, so that you don’t over exaggerate your capability. I think it’s hugely important not to be afraid to show your vulnerability.


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

I find it difficult, because there are so many different ways this disease can affect us. But the most important thing is to listen to your own body. Sense what is right for you.

Ask for help when things are really bad and let those around you know, so they understand what’s going on. This applies to your partner, family and friends, because you will also experience having to say no to social events. So, it’s important that your loved ones know that it’s not because you don’t want them, but because your illness and your body have to opt out.

I would also like to point out that when you have endometriosis, it’s possible to have your doctor write a clause 56. This means that your employer receives benefits from the public sector from the first day you are ill and every time you are ill. This can help not only the company, but also your own mental health, where you often feel you are letting your workplace down or are worried about your job every time you report sick.

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