Current Research on Endometriosis: An Interview with Dr. Nura Fitnat Topbas Selcuki

One of the limitations of research in endometriosis is that most data sets available are limited to European populations. 

Charlotte Weber: Could you please introduce yourself briefly?

Dr. Nura Fitnat Topbas Selcuki: My name is Fitnat and I’m a gynecologist. I finished my medical school in Germany at the University of Heidelberg Medical faculty in Mannheim. After medical school, I went home to Turkey, and I finished my obstetrics and gynecology training in Istanbul. That’s where I encountered my first endometriosis patients. Usually, gynecologists don’t have a subspecialty. We don’t see our patients that often because they only come to you for their annual checkup. Also, the diseases we treat are usually not chronic and patients are quickly discharged from our hospitals. An endometriosis patient is different. They come to us frequently, and we help to manage them. It’s very personalized medicine and it creates a bond between patient and practitioner. That is what got me interested in the disease. Right now, I’m working as an attending, and I’m doing a PhD in Oxford, only focusing on endometriosis.

Charlotte Weber: You already mentioned your fascination for the disease. What motivates you for your work?

Dr. Nura Fitnat Topbas Selcuki: The disease is very interesting in that we don’t know much about it. There is need for research and room for everything because we don’t have a cure. Also, the experience with the patients is something that drove me to do research and specialize in this disease. When I finished my training, I decided to go to Oxford as a clinical observer and there I got introduced to the EndoCaRe group.

It consists of PhD students, clinicians, basic scientists, post-docs, and professors, all doing research on endometriosis in different aspects of the disease. I realized that I wanted to be part of the research as well, so I applied for their PhD program, and now I’m affiliated with them and doing my research within the group.

About Dr. Nura Fitnat Topbas Selcuki

Nura Fitnat Topbas Selcuki is a gynecologist and PhD candidate at the University of Oxford. Her research focuses on the genetic basis of endometriosis and adenomyosis. In an effort to expand the knowledge in the literature beyond existing study populations, Fitnat is involved in conducting studies in the Eastern Mediterranean region.

Dr. Nura Fitnat Topbas Selcuki

Charlotte Weber: What do you think are the biggest challenges in the field of endometriosis?

Dr. Nura Fitnat Topbas Selcuki: The biggest challenge is diagnosis because often patients experience symptoms, but you cannot see the endometrial loci in an ultrasound. Practitioners are faced with the decision whether they should perform a diagnostic surgery on younger patients. It’s hard to decide because sometimes you don’t know what you’re getting into. Also, the awareness of the disease.

It’s getting more, but not all the patients know of it, so not all of them seek help. Even when they reach out to us, some don’t know about the disease. Painful periods are very normalized in our culture and some people are used to ignoring it. It takes on average seven or eight years to diagnose the patient. As a clinician that is very frustrating because if affected patients don’t get a diagnosis, they are never going to get treatment or management.

From a research perspective, the aim is to find a clear indication to diagnose, like a biomarker. That is, however, very difficult as well because endometriosis is not a systemic disease, so it’s not easy to determine what we are looking for in blood, or what we can measure to find out if this patient really has endometriosis. 

Charlotte Weber: What projects are you working on? Can you summarize your work a little? 

Dr. Nura Fitnat Topbas Selcuki: I’m looking at the genetic basis of endometriosis and adenomyosis, which is a different disease, but similar to endometriosis. For that I‘m conducting studies in different data sets. One of the limitations of research in endometriosis is that most data sets available are limited to European populations. We don’t know what’s going on in populations that have never been analyzed like the African populations, or Middle East or South America.

A part of my PhD is under the roof of the genetic basis of the disease to expand these study cohorts to other populations. Currently, we’re working on two studies in the Eastern Mediterranean region because that is where I come from. One of them, which was based in Northern Cyprus is called the Cyprus Women’s Health Research (COHERE) Initiative, and the other one is a study that we started in Turkey, the Turkey Oxford Endometriosis and Adenomyosis Study (TROX). The aim of both is to diversify the situation with the cohorts by adding a new population to the research to see if this may help us capture new variants that are associated with the disease.

Right now, we don’t have the results for this, so I cannot predict what’s going to happen. It will be interesting to see for the first time what the outcome of this analysis will be in these populations. COHERE has been recruited already. One of my supervisors from Northern Cyprus initiated the study there not just for endometriosis, but to look at other gynecological conditions as well.

In Northern Cyprus, there are a lot of political conflicts going on, so they don’t have nationwide health data. She wanted to start from the beginning by looking at the prevalence of endometriosis, and other benign gynecological diseases. That part of the data is getting published slowly piece by piece, but the genetics part is what I’m going to work on soon.

Charlotte Weber: For the TROX study in Turkey you’re still recruiting?

Dr. Nura Fitnat Topbas Selcuki: Yes, that is part of what I initiated. We started that after I started my PhD. We are going to finish recruiting very soon and start analyzing the data by the end of summer.

Charlotte Weber: How do you think your work will contribute to the lives of women with endometriosis in the long run?

Dr. Nura Fitnat Topbas Selcuki: This disease has a genetic basis and environmental factors that influence it. I don’t think that we’re going to find a mutation that’s going to explain everything, but if we understand the genetic basis of the disease, it will for one help us to counsel patients.

If a person has a first-degree relative who has the disease, this person will need guidance earlier than other women because they have a higher risk of developing the disease themselves. It’s important to understand and guide these women because until we have a cure, managing and guiding them is all we can do.

Also, by understanding the genetic basis of the disease, we will uncover which genes are involved and this will lead us to understand what the pathways that may occur are and help us understand how the disease develops and progresses.

Charlotte Weber: What are your future research goals, do you have some more plans yet?

Dr. Nura Fitnat Topbas Selcuki: Not yet, because I am in the second year of my PhD. We’ll have to see what the results of our current study are to design a future one. Right now, we’re aiming for a total of 250 endometriosis and 250 adenomyosis patients. Turkey is a big country with a population of 80 million that is very dense in certain cities, so it’s easy to recruit here and we can contribute more to the research community in terms of introducing our population to that in the future. Perhaps later we’ll look at the association between endometriosis and adenomyosis with other diseases instead of having the focus on the disease alone. We may also look at its association with symptoms because of the high variance in symptoms.

Charlotte Weber: Did you ever have contact with digital help or any kind of digital support for women with endometriosis?

Dr. Nura Fitnat Topbas Selcuki: I have no experience in that regard. I have never advised my patients to use it because first of all, I was working in Turkey, and not all digital work has a Turkish language translation, so it’s not that easy to adapt. In our research, we are asking our patients to fill out questionnaires, and I know that within my group they’re using not an application but a digital-based questionnaire.

It makes life very easy for everyone but in terms of an application, not really. For applications like the Endometriosis App, Turkey might be an interesting expansion in the future. There are a lot of Turkish people in Germany, so maybe getting it translated to Turkish might be something to think about. We have a lot of specialists, and they are all working and affiliated with the Endometriosis and Adenomyosis Society, Turkiye. We’ll be ready to help if you want to expand to Turkey.

Charlotte Weber: Is there anything else you would like to share with women who have endometriosis?

Dr. Nura Fitnat Topbas Selcuki: Everyone is trying very hard to find a cure or an easy way of diagnosis, but it continues to be hard. The research progresses slowly, which is sometimes hard to understand from a patient’s point of view. Some patients that I recruited last summer, called me to ask what had happened.

I had to inform them that there are no answers yet and that they had to wait. As a patient, especially if you’re suffering, this is very hard to do, but unfortunately, it’s not an easy disease to understand. Additionally, even though the funding is very low still compared to other diseases, the awareness is rising. It’s very well known now that women’s health gets less funding compared to other diseases. Talking about it will make a change, but it does take time. 

Charlotte Weber