Endometriosis – a condition that affects millions

March has been declared “Endometriosis Awareness Month”. Since 1993, various initiatives have been working to establish a fixed time each year at which to raise public awareness of the disease. In this interview, Dr. Susanne Beyer, Coordinator of LMU’s Endometriosis Center, and medical student Maren Rothkegel, herself an endometriosis patient and an artist who uses slams and a video to inform people about the condition, talk about how society deals with the condition. They also discuss new approaches in research.

It may be very widespread, but not everyone knows about endometriosis. What symptoms does it exhibit, and how is the condition diagnosed?

Maren Rothkegel: Endometriosis is a chronic condition in which mucal tissue similar to that in the endometrium (or uterine lining) grows outside the uterus – on the ovaries, on the intestine or on other organs, for example. Essentially, it can grow anywhere in the body but does so mostly in the abdominal region. The tissue behaves like endometrium: It builds up and bleeds away during the menstrual cycle, but it can’t leave the body. This results in inflammation and, often, in adhesions or knots. The sites of the inflammation flare up again and again, causing what can be serious pain for the sufferers.

Susanne Beyer: What are known as the four Ds, each of which describes a different pain, are an important factor in diagnosis. Dyspareunia refers to pain during sexual intercourse, dysuria to pain when urinating, dyschezia to pain during bowel movements, and dysmenorrhea to menstrual pain. Another issue is sterility, because endometriosis can also lead to infertility. Most patients exhibit one or more of these symptoms.

Why does it often take so long to diagnose the condition?

Maren Rothkegel: It is very common: About ten percent of all women of child-bearing age are affected by endometriosis, which adds up to around 190 million people worldwide. Yet despite this, it still takes eight to ten years on average to arrive at a diagnosis. The sufferers often hear things like “it is perfectly normal to experience pain during menstruation”. And that, for the time being, is that.

Susanne Beyer: “Pull yourself together” is another common interjection – less so today, fortunately, but you still hear it. And then there is the fact that sufferers often feel shame about the symptoms that accompany endometriosis. Pain during your period, pain during sex, the unfulfilled desire to have children: These are things that many people are reluctant to speak openly about. Although we are seeing change at the hospital: We ask the women who come to our endometriosis clinics how long they have had these symptoms. More and more frequently, I now hear that it is less than five years.

Endometriose: more awareness today

So the information campaigns are having an impact?

Maren Rothkegel: I get the impression that the gradual dismantling of taboos around issues hitherto regarded as shameful is helping to raise awareness of the condition such that it can be recognized at an earlier stage. We now speak more openly in society about such things as periods and the gender gap. And sufferers can now get better information – not just about endometriosis, but about many other diseases. People are also more willing to talk about them. On the whole, patients are becoming more independent and are using the Internet to learn about their conditions. Linked to this is the fact that people who visit a medical practice no longer simply assume that the doctor already knows everything.

Susanne Beyer: At the hospital, I do indeed get the impression that many people are already well informed when they come to me. In gynecological practice too, women increasingly ask to be passed on to specialist surgeries such as ours. And gynecologists themselves have become much more sensitized to the symptoms of this condition in recent years. I can’t yet say that everyone knows about the condition, but it is much better known than it used to be. France, for example, made providing information a matter of national policy by introducing an “Endometriosis Year”. That helped a lot. And if you then also see rap videos like the one by Ms. Rothkegel, all the better.

Maren Rothkegel: Especially in relation to endometriosis, you can now find all kinds of information on social media – for example on accounts where sufferers talk about their everyday life or generally seek to raise awareness. This in turn gives rise to better networks. Awareness campaigns such as having March as “Endometriosis Month” help to further stimulate discussion.

Research on endometriosis

Does this raised awareness also improve the position of the condition in research?

Susanne Beyer: To some extent, the two processes run in parallel. So, yes, the topic is receiving more attention in society and in research as well. Research projects such as various endometriosis apps, which are widely accessible and can be aggregated thanks to the large volumes of data, continue to improve the level of knowledge about this condition – among sufferers and carers alike.

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What is the current status of research? Which research questions are currently in focus?

Susanne Beyer: As things stand, endometriosis is and remains a chronic disease that cannot be cured. The research is very multilayered and deals with multiple aspects. One, for example, is how new drug therapies can be developed. There is also a focus on operations: When should we operate? When is it best not to? How can we make operations better with regard to the intraoperative visibility of inflammation, for example? How can we improve the care provided? The big question remains why some people develop the condition and others don’t: What is the protective factor? What is the source of vulnerability?

For example, it is exciting to explore the role played by the immune system in the emergence of diseases. This aspect has already been studied in the context of cancer, and huge progress is being made. It is still early days for endometriosis research, though. We are also investigating to what extent the microbiome influences the emergence and development of endometriosis, in part using artificial intelligence. And we hope that this will also lead to progress in exploring the role of metabolism.

How do you use AI in this context?

Susanne Beyer: AI can help us analyze the large sets of data that are recorded in apps. We get massive volumes of data that we then want to sort to filter out factors that could be important for predictions and diagnosis. Maybe this will help us find a biomarker, for example. If it did, that might mean that laparoscopies would not always be needed to make a diagnosis. More generally, we hope to be able to find an approach to not only controlling but actually healing this disease. That is our goal.

Ms. Rothkegel, you will soon finish your studies of medicine. Will you then go into gynecology and continue to research and treat this disease in a professional capacity?

Maren Rothkegel: I probably won’t go into gynecology, but this is an important topic in all areas of medicine. Patients with abdominal pains often go to their general practitioner, who is usually their first port of call. That is also true of many younger patients who, until recently, will have been treated by pediatricians and have never been to a gynecologist. So, especially with this in mind, we still need to raise a lot more awareness.

About

Dr. Susanne Beyer is Senior Physician at LMU’s Obstetrics and Gynecology Clinic/Polyclinic in Munich, where she also coordinates the Endometriosis Center.

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Maren Rothkegel is studying medicine at LMU. She is a fully trained nurse, an endometriosis patient and an artist. The rap song she wrote and composed herself, describing life with this chronic condition, won her the Munich University Society’s 2024 Science Slam in the “Freestyle” category. In its first month, the video “Cycle of Pain” which she produced in collaboration with artist Julia Brumm immediately drew thousands of views.