Current Research on Endometriosis: An Interview with Henrik Marschall

Teresa Götz: Welcome. Thank you for taking the time to speak with us. I can introduce myself briefly. I’m Teresa, the psychologist for the German Endo-App and the German Endo-App website. Could you please introduce yourself to our readers?

Henrik Marschall: My name is Henrik Marshall. I am also a psychologist. After my master’s degree, I went into medical research, currently, I’m a PhD student in Denmark at Aarhus University and I’ve been working on endometriosis. As part of my PhD, I’m conducting this placebo-controlled surgical trial where we want to investigate whether excisional surgery is useful specifically for superficial peritoneal endometriosis, to find out whether this surgery has a pain-relieving effect.

Teresa Götz: What fascinates you most about endometriosis?

Henrik Marschall: I remember meeting an endometriosis researcher at a lecture as a bachelor’s student. I didn’t know anything about endometriosis then. Still, I volunteered as a student helper, and on my first day talking to patients, I was fascinated by this typical story of a diagnosis delayed (for years) and a desired pregnancy being difficult to achieve. There are a lot of issues, and I think that’s the main thing that fascinates me about endometriosis: There is so much good that can be done with research. If you want to research pain like I did, there are many things we don’t know yet about pain and endometriosis. I think it’s all the unanswered questions and the desire to help patients.

Teresa Götz: Is this your main motivation for your work?

Henrik Marschall: Yes, absolutely. I am most fascinated by endometriosis. I’m not sure I’ll continue in research if I can’t do research on endometriosis, because I’m very motivated and fascinated by the patient population.

Teresa Götz: You already mentioned there are a lot of problems, in the field of Endometriosis. In your opinion, what is the biggest challenge now?

Henrik Marschall: One of the biggest challenges is how little we know about the pain mechanisms. On the one hand, some women with endometriosis have many lesions or cysts but don’t have pain. On the other hand, some patients have (small) endometriosis lesions and are completely paralyzed by pain. This discrepancy, I think, is a big issue, and it’s a problem that we don’t understand the pain mechanisms, especially when we talk about surgery. (Possibly) a patient who is sensitized to pain because she has had years of untreated pain, and then you do surgery, it can make the pain worse. You can’t tell at this point. You can’t screen for it. We don’t currently have a proper screening tool to identify the patients likely to benefit from surgery and, more importantly, those likely to have worsening symptoms after surgery. I think pain mechanisms are one of the big challenges right now.

Teresa Götz: We’ve already talked about this, but could you summarize your research for our readers in a few words?

Henrik Marschall: This surgical study focuses on the pain-relieving effect of tissue removal specifically for superficial peritoneal endometriosis. (Editorial note: Superficial peritoneal endometriosis is a form of endometriosis in which endometrial tissue grows on the surface of the peritoneum and can cause symptoms such as pain and inflammation). We focus exclusively on the superficial peritoneal mucosa, while the more advanced stages of endometriosis or infiltrating endometriosis are excluded from the study. Concurrently, there are inconclusive study results on surgical intervention.

In some studies, the effects were very large; in others, the effects were not very large. In my opinion, it is important to get new research results specifically aimed at answering the question of whether tissue removal is beneficial. It certainly could prove to be beneficial. In my opinion, we need more experimental studies. The study is about answering the question of whether the removal of endometrial tissue provides enough pain relief to justify the risks.

Teresa Götz: What would be the next step in the study?

Henrik Marschall: In this context, on the one hand, we are trying to involve only specialized endometriosis surgeons. On the other hand, we are also trying to perform some quantitative sensory tests to learn more about the neurobiological effects of the surgery. We expect that the excision group will show significantly more signs of neuropathic changes compared to the other groups because we assume that although it is a minor surgery, it still puts a strain on the body.

Teresa Götz: I’m looking forward to seeing the results. You are working with Ms. Hansen. Can you tell us about your research study with her?

Henrik Marschall: One of the projects was a narrative study where we asked a group of patients to describe the impact of endometriosis on their lives. We then attempted to code these more qualitative narratives and examine relationships to certain dimensions of mental health.

Another study we are currently working on is an investigation of patients’ and clinician perspectives on endometriosis surgery. We wanted to compare both patients’ motivations for undergoing surgery, their goals for endometriosis surgery, and some of the mechanisms of action that they themselves feel are important in their treatment. For example, feeling that they have enough time to describe their symptoms and grievances, and that the medical staff listens, and things like that. We wanted to compare this to similar questions asked of medical staff who work with endometriosis. (Editorial note: However, the results and data of this study have yet to be published.)

Then we also did a study where we validated the EHP-30 questionnaire for Danish.

(Editorial note: The EHP-30 questionnaire (Endometriosis Health Profile-30) is a standardized 30-item questionnaire used to assess the impact of endometriosis on the quality of life of women, covering various aspects such as physical activity, pain, emotional well-being, social relationships, and more.)

Teresa Götz: The EHP is also important. We also use it in Germany. It is important that everyone can use it and that we can compare it in different countries. Another question I ask myself what are your future projects or research goals that you have?

Henrik Marschall: I think my main goal now is to complete the surgical study. From my discussions with the patients who have completed the trial, I have the impression that there are some subgroups. There are some patients who report large effects, even from the diagnostic surgery and not just from the excision. Then there are some patients who experience significant detriments. If this pattern continues, then perhaps there are at least two major subgroups that one could talk about: a group of patients who are likely to benefit from surgery, and a group of patients where the surgery is possibly too taxing on their bodies. I think it would be interesting to develop a screening tool that could predict with relatively high accuracy who is most likely to benefit from surgery. I think that would also be important for doctors and surgeons around the world. I think that sometimes there is also a certain pressure from the patients that something must happen, which I can understand. If you’ve had pain for several years and you keep hitting a wall in the healthcare system, you naturally get desperate and start pushing for treatment.

I think it would also be interesting to look at the impact of infertility on mental health, because many people dream of having children, and some endometriosis patients not only suffer severe pain that can interfere with their personal lives or careers, but some can’t have children because of the disease. It is a disease that can take a lot out of those affected. I think I would probably be interested in looking more into fertility as well.

Teresa Götz: Thank you for your reply, and you are right, there is much to be done in the field of research. Another question that comes to mind is, what do you think about digital self-help, and did you also work with My Endo in your case?

Henrik Marschall: Yes. I’ve worked with My Endo, and I think there are many things that could be explored digitally when it comes to endometriosis.

For some studies, it’s a challenge that therapy sessions had to be physically attended. However, there are some patients who were eligible to participate in the study but were unable to participate for various reasons, such as distance, family situation, or severe disease symptoms. To overcome these barriers to participation in therapy, a digital tool would be of great benefit. If the psychological intervention works in a face-to-face session, then we could very likely investigate whether it also works digitally, because I think it will be of great benefit to many people.

Teresa Götz: My last question: is there anything else you would like to share with those affected?

Henrik Marschall: I am not sure if this is the case everywhere, but at least here in Denmark I think it is good that many people with endometriosis are very willing to participate in research. For example, they are very willing to give interviews on the radio or on TV and talk about the disease, their pain, and the impact of endometriosis on their lives.

For this research to take place, we need participants. I think it is a group of people with great willpower. I believe that the collaboration between medical staff, researchers, and endometriosis patients will eventually lead to an improvement in the situation. As a researcher, I am very grateful to the participants. All my projects so far are going well because there are many people who are willing to participate, and that is a great honor for me.

Teresa Götz: That’s a great message for our readers. It is no different in Germany. We have a lot of active participants and a lot of people who are willing to work with the researchers and contribute a lot. The research is nothing without the participants, without them we can do nothing.

Thank you very much for the informative interview.

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Teresa Götz

Teresa Götz studied psychology in Heidelberg and then gained rich experience at the Endometriosis Center Bad Waldsee.