Current Research on Endometriosis: An Interview with Louis Taffs

“We must recognize that Endometriosis affects adolescents and take it seriously.”

Teresa Götz: Could you please introduce yourself briefly?

Louis Taffs: Hello, my name is Louis Taffs. I’m an Australian medical student. I started my research career with endometriosis, looking at the experiences of patients with endometriosis in Melbourne, where I’m from. Since then, I’ve been studying medicine, but I’ve kept one foot in endometriosis research. 

Teresa Götz: Can you explain further what was your initial research and how did it develop?   

Louis Taffs: I participated in a group led by my professor, Michelle Peate, that focused on the unmet needs of endometriosis patients, called ‘EndoNeeds’. There was some disconnect between how people were experiencing their symptoms and what they needed help with.

We started working on a framework to try and ask people what they needed help with as opposed to what we assumed that they needed help with. The work is still underway.  

Later, another research focus for me was how we consider endometriosis as a disease and how closely it is related to fertility. We say that Endometriosis is a gynecological disease that we say usually affects women in their reproductive years. From a scientific point of view, we know that menstrual periods range from menarche to menopause, that is, from the first period at the age of 10-12 years to menopause at the age of 45-50 years.


Louis Taffs is a post-graduate medical student from Melbourne, Australia. He is working with the emPoWeR Unit at the Royal Women’s Hospital in Melbourne and Sydney Health Ethics. In his research he focuses especially on adolescents. Currently he is pursuing his studies in France and Germany.

This is true from a scientific point of view, but when we talk about reproductive years, we also have an idea of who in society gets pregnant and who should get pregnant. That’s primarily women between the ages of 27 and 35. In my work with adolescents, and if you look at the research and publications, many young teenage girls are told, “You’re too young for endometriosis.”

However, when you talk to endometriosis sufferers and ask them when the pain started, they answer, “Well, with my first period when I was 10 or 14 years old.” We know that most people who have endometriosis had symptoms as a child. We still don’t accept that children can have endometriosis, or that teenagers can have endometriosis. I suspect that the reason for that is that our idea of endometriosis is so closely tied to fertility, and fertility is (rightfully so) not the business of children.

But here’s the thing: They have a uterus, they have a vagina, they’re having their periods, they can have endometriosis, and they’re suffering. They can’t go to school, and they can’t do all the things that they would normally do because they have this pain, but because they’re not of fertile age in our society, we don’t consider endometriosis to be the disease for them. At least not at first glance. 

But that doesn’t mean that we can’t acknowledge in our minds that endometriosis may also be a disease of adolescence or even a pediatric or developmental disease and not a disease of adulthood. Because everyone we talk to says, “I had this when I was young.” 

Louis Taffs: I think my work originates primarily in the fact that we don’t have a simple diagnostic measure. I think that from a scientific and medical point of view, we are still hampered by the fact that our gold standard diagnosis requires surgery, which brings a whole set of problems.

I’m not a clinical researcher and I don’t work in the lab but currently, they are trying to find biomarkers, which could make diagnosis easier. So probably the biggest challenge is to develop this non-invasive diagnostic measure. 

Until then, I think the next step on the road to cure is how and why, and who gets endometriosis. 

Teresa Götz: Getting it cured before the pain becomes chronic would be also important.  

Louis Taffs: That’s the reason why I think working with teens is important because I think that even though we don’t have that tool yet in the form of a non-invasive diagnostic measure, it doesn’t mean that we can’t still look at endometriosis as a teen disease.  

Because I suspect that once we have this non-invasive diagnostic tool, we will realize that so many teenagers are suffering from it. 

I guess what I was trying to say with my poster at the endometriosis conference was, we know that many people have endometriosis at a young age, and we know that these people have endometriosis even if we can’t prove it currently still requires surgery.

Why don’t we pretend that they have it? Hopefully, that will allow them to get better care. It will allow them to get a diagnosis, even if it’s preliminary. Once they have a diagnosis, they will have access to better care. 

Teresa Götz: Being a teenager is hard, even without pain.   

Louis Taffs: Yes. You have to learn, you have to work, but also just being a young person and trying to make friends and socialize and date and all that: When you’re struggling with your period in a really bad way, that’s really, really hard and can throw you off track and certainly be a disadvantage to your peers for the rest of your life, which is something that we need to figure out and address. 

I understand that doing research with under-18s is hard and requires a lot more consideration and necessary ethical hurdles, but there are a lot of diseases that affect children, and people do amazing research that helps improve the lives of those kids now and for the rest of their life.

Teresa Götz: I have two more questions. One question. You have experience in different countries. You are an Australian. You are in France now and you will be in Germany. What is your impression when you compare the different countries? 

Louis Taffs: About a couple of years ago, the Australian government put out a national endometriosis action plan and there was a certain amount of funding allocated. I would still say that endometriosis as a gynecological disease, it doesn’t get a lot of funding compared to other diseases. But there was a recognition of the disease and its impact.

I think this funding came off the back of a impact report of endometriosis on Australian economy. It was about  people who were not able to do work and people who were working but not able to perform as they normally would. It was a good report acknowledging how much time and money it costs people to travel to medical appointments, not being able to go to work, and all those things. That was a couple of years ago, and it raised a lot of awareness in Australia, and I think that was the first step, and I think that’s why Australia has done so much. 

In Germany, I have the feeling that there is also a similar attitude in terms of trying to do patient advocacy. Australia puts a lot of emphasis on public health. I think a lot of endometriosis treatment is also related to how society and physicians view women, and in that respect Australia and Germany are similar.

I think the similarity is that we are dealing with historical misogyny and changing our medical systems. I think there are many centers of excellence in Germany as well. I understand that Germany also puts a lot of money into research, much more than Australia. A lot of scientists go to Germany because the German government is willing to fund scientists from Australia, but the Australian government is not willing to fund them. 

Teresa Götz: That would be a good way to deal with the good things, like public health in Australia, coming to Germany and the scientists benefiting from the German money to do that. That would be a good outcome. A globalized world to use it in the best way.

Louis Taffs: I think that a lot of collaboration can be formed through the World Endometriosis Congress. There was a lot of participation here from the northwestern countries of the world. But I was glad to see East Asia, Africa and South America were strongly represented. Because when we’re talking about data when it comes to drugs and such the more we have a truly global picture of what endocrine disease looks like in people. Even at the biological level, the more that will help us. 

I think when we have international conferences like this, the differences between countries like Germany and Australia are not that big. I’ve been listening to patients’ stories on your Instagram, and of course, they’re very similar when it comes to being turned away and all those things.

The pathways through the healthcare systems are also similar. I think we all face similar problems, but that means we can also find similar solutions. I think it would be great if we could share those solutions. 

Teresa Götz: My last question. What do you think about digital self-help?

Louis Taffs: I think that’s good. With endometriosis, sometimes there is no cure, and the treatment options all have their different side effects. People often feel very helpless after talking to the doctor. I think it’s very important to give people a broader range of options and a platform to take back control of their bodies, their health, and their minds.  

Sometimes it’s important to have something that can support you in your own home in dealing with the disease. I think it can encourage people to just keep going, push through, and try different things. It helps people find things that work for them. Everybody is different, and I suppose that’s what we’re trying to figure out. Not only is it different biologically for each person, but the symptoms are also different. 

I think it’s important that your app is tested and validated and supported by well-meaning people and by science. There are many things you can’t measure, and it’s too difficult to measure the spiritual success of a particular self-help method. I think that well-structured, well-monitored devices that allow people to help themselves will make them less likely to fall into the dark areas of the internet. 

Teresa Götz: As you said, patients should be able to act in a self-determined way. Is there anything else you would like to share with those affected? 

Louis Taffs: I feel like there is a common thread: When people get a diagnosis, they are overwhelmed, and there is so much to read. Some of it is also very contradictory. I think it’s contradictory because everyone goes down a different path and everyone has different symptoms.

A certain type of surgery may work for one person and not for another. I think we want to look for those universal truths and solutions. But it can also raise a lot of questions. I think you must figure out the answers to your questions slowly and surely, and it’s incredibly individual what works for you, for your body, and your life. I suppose you just must give yourself the patience in this process. 

Teresa Götz: I think you said it very nicely: be patient with yourself and you will figure it out on your own. Thank you very much for this interview and I wish you all the best for the future.