Current Research on Endometriosis: An Interview with Dr. Tatjana Gibbons
“I think that the main thing is that around the world, there are fantastic doctors, researchers, and scientists who do hear their stories and hear the struggles that they’re going through.”
Teresa Götz: Could you please introduce yourself briefly?
Dr. Tatjana Gibbons: Yes, of course. My name is Tatjana Gibbons. I am a doctor and PhD student here in the UK the University of Oxford. My main project is to develop a non-invasive imaging test for endometriosis. Essentially, we are investigating to see if a non-invasive marker that is showing great success in detecting rheumatoid arthritis, can detect endometriosis.
The marker binds to areas that are highly inflamed and developing new blood vessels. We’ve scanned the first few patients, and that’s the data I presented at the Congress [WCE]. But we need to study more patients before we know how successfully the marker is working .
Teresa Götz: So, the goal of their research would be to develop a non-invasive diagnostic tool. That would be helpful.
Dr. Tatjana Gibbons: Exactly. The interesting thing is that the activity level can be measured. So it could help not just in determining whether a disease is present or not, which is of course very important, but also whether a disease is active or inactive and whether it is progressing or whether it seems to be stagnating in its course which I think makes it very exciting.
The other project is looking at global endometriosis policy. This project was requested by the WHO and supported by ICMART. Basically, we looked at each country to find out what data is available on endometriosis policy development whether it is being discussed and implemented, whether there are plans, and whether the country recognizes that endometriosis is a problem and what it is doing to improve the situation.
About Dr. Tatjana Gibbons
Dr. Tatjana Gibbons is a doctor and PhD student at the University of Oxford in the UK. Her main project is to develop a non-invasive imaging test for endometriosis. She and her team are trying to develop a non-invasive radioisotope marker which has been shown to be very successful in other inflammatory diseases. On her Instagram channel @drt_endometriosis she regularly updates on her work.
Teresa Götz: What were the results in the observations and comparisons of the countries and were there any conspicuous features?
Dr. Tatjana Gibbons: I think it’s striking that there are only two countries so far, France and Australia, that have a national endometriosis strategy document. There are countries like the UK that have also included the issue in their women’s health strategy.
But it felt a little disappointing and shows that most countries still have a lot of work to do. We hope that this work will stimulate discussion on the topic to see if countries or stakeholders can say, “Hey, this is what this country is doing, maybe we can do the same thing in our country if we have the same resources.”
Teresa Götz: Absolutely. I think those are great concepts to present to your health policymakers or advocacy groups. What’s interesting is the differences between countries like Australia. They are way ahead of the other countries.
Dr. Tatjana Gibbons: Not only do they have a plan, but they recently released a progress report that shows how far they’ve come. It’s amazing that they’re really leading the way on endometriosis policy.
Teresa Götz: We can already see that the strategy is working. One question I ask myself is, how did you come to do research on endometriosis?
Dr. Tatjana Gibbons: I think the most important thing was my childhood friend. She suffered from endometriosis, but we didn’t know what it was. I grew up with her having painful periods all the time, pain always. We never really understood it. It was almost normal for her. We just knew that sometimes she couldn’t do anything, or sometimes we had to cancel our plans and just sit inside because she was in so much pain or not able to do fun teenage things.
When I started reading about it, it all made sense. It was really upsetting that we had accepted for so long that this was normal for her. Then when I started medical school, I learned a lot more about the condition and was really confused by the fact that we always know that about 10 percent or one in 10 women have endometriosis, but it still isn’t prioritised.
A large percentage of women are affected by it, but we still don’t really understand why it’s there, how to treat it properly so it doesn’t come back, and our system at least in the UK I don’t think is developed to support people throughout their lifelong condition.
My friend missed so much in school because of the disease. There were no support systems in place to make sure that was recognized as a disability or chronic illness.
I did a mini audit during my GP placement in med school and I wanted to see how often endometriosis as a possible diagnosis was raised. I can’t remember the exact numbers and it is possible the conversations were just not recorded but I got the impression that in many cases the possibility of endometriosis had not been discussed which is heartbreaking.
Then I had the pleasure of working with Professor Neil Johnson during my elective in medicine in New Zealand. That changed everything for me. I could see the reassurance and relief that patients felt when they spoke to someone who listened to them, understood endometriosis and knew how to help. I really realized the difference I could have by focusing my career on endometriosis and trying to bring light to a field which feels like it’s been missed. And everything just progressed from there.
Teresa Götz: Would you say that’s your main motivation, to make a difference and sometimes be the first person to really listen to a patient?
Dr. Tatjana Gibbons: I think so. I like that even now when I work either in hospital or if I meet people for example at outreach events and someone will say: “Oh, I think I have this.”. I think it’s important for sometimes the first health professional that they open up to, to make them feel listened to and help them through the next steps.
I think people once they’ve read about endometriosis and often they already know something’s not right with their body, it’s so important not to underestimate the insight they have on their own body so they should never be left thinking it’s just in my head. I think validating what they already know about their body is so simple but such a lovely thing to be able to do for people.
Teresa Götz: I also think that your friend’s story is a typical story of an immaterial patient, unfortunately.
Dr. Tatjana Gibbons: I hear that all the time. I think it’s very rare that you meet someone who says, “Oh, I had a fantastic experience.” A simple diagnosis is sadly rarely the case.
Teresa Götz: We talked about the challenges in the field of endometriosis. What do you think is the biggest challenge now?
Dr. Tatjana Gibbons: I think it’s still about awareness, because even if we develop something that we can use to detect endometriosis, but if someone doesn’t know what it could be or that their symptoms are not normal, or if the first doctor they talk to doesn’t recognize that it’s abnormal, then it doesn’t matter if we have these diagnostic techniques.
It must be recognized as a condition, as a possibility. I think education and awareness, especially with younger people, is important. I think we really need to focus and teach in schools what is a normal period and what is an abnormal period, and not develop at a young age these coping mechanisms of just living with the pain and accepting that it is your body. I think awareness is the biggest challenge we have so far.
I think we are doing amazing work in developing biomarkers and all these things. I think that very soon, especially with the saliva test that is going to come to market and all these amazing things, we are making progress. I also saw at the Congress that Professor Matthew Leonardi was able to detect superficial disease on ultrasound, which is just mind-blowing. There are all these amazing advances, but I really believe that the progress is almost wasted until people start talking about it, and the disease is considered a possibility.
Teresa Götz: What are your future projects? As you said, some projects are extended into the future, but are there any new projects in sight?
Dr. Tatjana Gibbons: One project that I’m really excited about that we’ve been working on for some time is developing a meta-analysis that evaluates every single type of endometriosis treatment. The reason we’re doing this is that right now you go to your doctor and they say: “Oh, we can try this or that”. But there’s no real data on what’s the best, what’s the ranking of the most effective treatment for each specific symptom because, of course, each symptom is different. We are basically doing a huge project. We’ve included almost 200 papers and looked at 200 studies to figure out what the best treatment is for each type of pain. I’m very excited about that.
Teresa Götz: I think there have been more studies on endometriosis in recent years, so you have more to analyze and consider. However, I find that there is not enough research and studies in some areas like yoga or nutrition.
Dr. Tatjana Gibbons: Concern with some of those studies is they have a very short follow-up period. It’s hard to compare a yoga study that only goes up for two months compared to a medical trial that goes up for six months or a year. We’re still trying to figure out those nuances, how or can we even compare these two, which is such a shame because I personally feel like that’s a huge area that we’re missing out on by not having data there.
Teresa Götz: What do you think about digital self-help?
Dr. Tatjana Gibbons: I think it’s fantastic. I think it’s amazing when you have something that you can either reach people with or that they can track certain changes with, like how they respond to treatments and all those things.
Especially if you can use it to combine complementary medicine and things like that. Like you said: Physical therapy and yoga and all those things, nutrition and advice.
I think it’s good to have a wide range of resources. It’s important to find out what works best for you, and I think if you can track that as well, it’s important to find out what method is most successful.
Teresa Götz: My last question is: Is there anything else you would like to share with those affected?
Dr. Tatjana Gibbons: I think that the main thing is that around the world, there are fantastic doctors, researchers, and scientists who do hear their stories, and hear the struggles that they’re going through. I know many feel they’re not being listened to, but although we are small there is a fantastic community that does care about them and are trying our best to improve their situation.
I think it’s so important for us as scientists to just say thank you to all the people who’ve contributed to the research studies and participated in these studies. We’re lucky in Oxford, we have such an enthusiastic group of participants who are really motivated to help us because they just want to try and change the situation for everyone else. I think it’s such a lovely community to be in. I’m just very grateful to everyone who participates.
Teresa Götz: Yes, that’s true. The researcher cannot do anything without the participants, without the patients, who are very important to be motivated and to participate.
I think this interview was very helpful. I find your research very interesting and wish only the best for the future.
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