Living with endometriosis: One woman talks about her experience


I first heard about endometriosis from my friend Katharina Braun. When she told me about her illness, I could hardly imagine this radiant, positive person having to lead a daily battle with her body and at times suffer unbearable pain. I am all the more grateful that she patiently answered all of my questions about her condition, offering me an intimate insight into a life with endometriosis.

Katharina, could you please tell me a little bit more about living with endometriosis? Does one carry the condition from birth and it becomes active with sexual maturity or is it an illness that can develop over time without a genetic predisposition?

Both scenarios are possible. Endometriosis will usually appear with the first period and develop from there. But it can also develop after birth. You may have been symptom-free for a long time, and then hormonal changes will cause the symptoms.

When was your endometriosis diagnosed?

For a long time, and during all of my teenage years, I was taking the pill. So I didn’t menstruate. Menstruation can cause inflammatory foci to grow. But because I never had a real period, I experienced no complaints. At the age of 22, I stopped taking the pill. At the time, my boyfriend and I were planning to have a child. We tried a lot of different things, testing all the well-known methods to conceive, but nothing happened. And it didn’t help that I found myself constantly ill and tired. I was also in a lot of pain. And not just during my period, but also at other times.

At the age of 24, I went to see a lot of doctors, but none were making the right diagnosis. Indeed, I received the most curious diagnoses and medication. Nothing helped. However, the worst part was that most of the doctors just didn’t take me seriously. “Period pains are normal.” I was told most of the time. The point is, my period pain wasn’t normal and my weak immune system had nothing to do with it. You see, I eat well, I’m active and generally lead a healthy lifestyle. So, how can I be sick all the time?

What happened then?

When the doctors didn’t know what to do, they claimed I had a psychosomatic condition. They said I was imagining the pain – a hypochondriac. That’s when I began to do my own research. When I found out about endometriosis, I felt pretty sure that was what I had. However, the final diagnosis could only be made via a laparoscopy. It took a long time before my gynecologist finally believed me. Unfortunately, he sent me to a normal hospital. That was a mistake. A specialist clinic would have treated me correctly, but the hospital I went to, treated the typical growths of the uterine mucosal tissue that are part of endometriosis with injection. That’s not the best way to treat them, because scar tissue develops. On top of this scar tissue, new endometriosis foci develop. The best way to get rid of the foci is to cut them out. However, I didn’t find out about that option until many years later.

As I slowly awakened from general anesthesia, the doctor loudly announced that she had removed everything and I was infertile. It didn’t really sink in. I was sedated and in pain. My mum, who was present at the time, later explained the full extent of the operation. My treatment was poor and presumably this made it even more difficult for me to receive fertility treatments later on.

Endometriosis occurs in different forms. What is it like in your case?

Besides the pain, which is often almost unbearable, my immune system is completely destroyed. I constantly get cold sores or develop illnesses such as mouth blight. The pain is particularly bad before and during my period. It sounds dramatic, but there have been moments when I really just wanted to die. I am chronically tired, lack energy and feel exhausted. With too much stress, my symptoms worsen. That’s why I’m less resilient in my job. The only thing that seems to work for me is taking good care of myself, but sometimes it’s just not possible. At times, my belly becomes so bloated that I look like I’m pregnant. That’s just cruel, because I would like to be pregnant, but I can’t conceive.

What do you do to alleviate your symptoms?

Apart from regularly taking painkillers, I’ve tried every single “home remedy”. Sometimes, turmeric helps a little, and other times it’s useless. For a while, I tried eating a diet low in histamines, because some doctors see a correlation there. This did actually help relieve my bloated belly. On the whole, I try to eat as “clean” as I can. That basically means eating as few processed foods as possible.

I tried smoking cannabis for the pain, which helped a bit, but it only makes me more tired. In my opinion, the psychological burden of the disease is best addressed by seeking professional help. The pain and hopelessness can quickly turn into depression and feeling stuck.

Due to your illness, you’re missing more days at work. What have been the reactions of your employer and work colleagues?

The negative reactions to my symptoms and the associated failure to attend work are the main reasons why I’ve decided to become self-employed. I used to work at an agency and had many colleagues. There, I expected some understanding, particularly from my female colleagues, but found little – even when they witnessed an episode live. I had to do a lot of extra work to catch up and meet deadlines, but that was never really noticed. I can completely understand that, but on the other hand I didn’t choose to live with agonizing pain. Some colleagues were more understanding and would compare my experience with their period pains. I know they meant well, but a hot water bottle just doesn’t do anything for me. The best way to approach someone suffering from endometriosis is to take her condition seriously and share an interest in it.

I loved working and still do, but the illness often forces me to bow to it. I reached a point where I was sick of having to justify myself or prove my pain. The last thing a woman suffering from endometriosis needs is to not be taken seriously and be labeled as a liar or hypochondriac. In addition to fighting your own body you are also having to fight your surroundings. That’s not right. I was beginning to doubt myself and the psychological burden had become too much to bear.

Can endometriosis be cured?

One of the main problems is that endometriosis isn’t well researched and there’s still a lot of ignorance. After surgery, I was symptom-free for about a year and a half. But others who have had the inflammatory sites removed correctly may be lucky and remain symptom-free. The wrong treatment can definitely make it worse.

Is it possible to become pregnant with endometriosis?

Endometriosis is one of the main reasons why women are infertile. Nevertheless, it is possible to become pregnant. The condition comes in many different variants and degrees of severity. It doesn’t have to limit fertility.

Do you know any professional contact points for women suffering from the condition?

There’s a dedicated endometriosis center at the Charité in Berlin, which I can recommend. There are also many online self-help and Facebook groups – best to Google them. I’ve taken a step back from them, though, because I realized that constantly focusing on the issue is driving me insane.

Most family planning clinics tend to have endometriosis centers attached. There are special rehabilitation centers for endometriosis patients, which are useful after an operation. You can also become a member of the Endometriosis Association, which sends out good information and organizes events on the issue.

What advice do you have for women who have recently been diagnosed with endometriosis or who don’t know how to deal with the condition?

Don’t panic and don’t believe everything you read on Google! First of all, find a good endometriosis center and get some advice there. If you are planning to have children, you should seek advice about your options at a family planning clinic and find out more about living with endometriosis.

Don’t spend too much money on supplements. Instead, focus on yourself and your needs and learn to accept your condition. I also had to learn to accept it and more importantly how to communicate what I had learned. Your partner also plays an important role. If your partner doesn’t support you it’s time to say goodbye. If they can’t support you when you are sick, they don’t deserve you when you are healthy!

I can hardly imagine a better way to end the interview. Thank you for your time, your honesty and the strength you radiate.

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Fitness trainer, blogger for Louise et Hélène, photographer and turtle-mum: Konstanze took many roles over the past years. Her believe: Life is a playground, where everyone can discover new things every day. Curiosity and drive compelled her to start writing. Through her work, she seeks to explore the role of women in society: does it mean to be woman? What are the specific challenges? How can I enjoy my femininity in an honest way? And how do we keep the balance between body culture and body positivity? Konstanze is looking for the answers every day.