Current Research on Endometriosis: An Interview with Luana De Giorgio
“We must recognize that Endometriosis affects adolescents and take it seriously.”
Teresa Götz: Could you please introduce yourself briefly?
Luana De Giorgio: I’m Luana and I’m based at the University of Exeter in the UK. I’m doing a PhD right now. The PhD project is called PAWES, which stands for Physical Activity for Women with Endometriosis Symptoms. What I’m really interested in understanding is the associations and the relationship between physical activity and all of its different forms and all sorts of different endometriosis symptoms, including quality of life.
Physical activity in women with endometriosis is very poorly understood. There’s very little research out there and it stems from an interest because we know that physical activity is beneficial and can have therapeutic benefits for lots of other chronic conditions. Its relationship with pain is also interesting. I know that at the moment the treatments for endometriosis are missing quite a few things so a lot of women decide to even just not go on them because there are a lot of side effects.
A lot of women with endometriosis turned to self-management strategies and this is something I’m interested in across the board, even dietary. It’s beyond my PhD, but I’m a big advocate for self-management for patients with chronic conditions. Physical activity fits in there quite well.
About Luana De Giorgio
Luana De Giorgio is based at the University of Exeter in the UK where she is currently pursuing her PhD. With her project PAWES (Physical Activity for Women with Endometriosis Symptoms) she tries to understand the associations and the relationship between physical activity and all of its different forms on different endometriosis symptoms, including quality of life.
From a lot of survey studies women with endometriosis are reporting that they do use physical activity as a management strategy, but we don’t really have the evidence to show what that association is in much detail, where there may be different intensities of physical activity, different phases of the menstrual cycle, all sorts of different interesting questions.
If we start to understand that relationship better, hopefully then we can have some guidelines and some tips for healthcare professionals to inform their patients and also directly to patients as well. It’s quite interesting because, in women with endometriosis, we have a lot of different phenotypes as well. That relationship might be very different from person to person, but that’s what I do now.
My background, I did biomedicine as an undergraduate for my bachelor’s and now I’m funded by the UKRI, which is the main government institution that funds research in the UK.
Teresa Götz: How did you come to research endometriosis, physical activity, and self-management?
Luana De Giorgio: I did biomedicine as an undergraduate. I didn’t enjoy my time in the lab and I then ended up finding out more about health research and physical activity and diet and things like that through the university working as a research assistant. I worked as a research assistant in different projects looking at physical activity. For example, my first one was looking at physical activity in women throughout pregnancy. I fell into women’s health and I realized then how little we know.
That really started my passion for women’s health, knowing that we don’t have enough funding for it, we don’t know enough. I figured that’s something that I have the skills to perhaps help with and help build a better evidence base and solve a little bit of that. Health inequality is also, again, something that really does bother me and something that has fueled my interest in it. That’s why I went into women’s health. Then along the lines of inequality and areas of health that we don’t know a lot about and that people aren’t paying enough attention to is something that has always really interested me.
When I knew I wanted to do a PhD and look at self-management strategies in chronic conditions especially, I knew I wanted to do it probably in women’s health. I knew I wanted to do self-management strategies and I was trying to find what’s something that we really don’t know much about and what thing that can really target.
I’ll be really honest, I had no idea what endometriosis was at the time. I was reading a lot of stuff about different women’s health conditions. It was a deadline before I had to pitch my idea of what the condition was going to be to the people who would eventually become my supervisors. I went to bed that night and I was like, I know what I’m getting my PhD on.
It’s going to be endometriosis because I’d read about it and thought physical activity in endometriosis. It’s got all the signs for a condition that should have an interesting relationship with it. I was reading so much about how little we know and the suffering of women with endometriosis and I was like, Right, this is my calling, this is what I want to do. Not knowing much about it and then realizing how many people it impacts was crazy.
Teresa Götz: You also mentioned a lot of challenges in the field of endometriosis. What would you say is the biggest challenge now?
Luana De Giorgio: I haven’t been in the field that long, so my view will be probably very skewed from quite young. It’s moving away from a lot of surgery and pharmaceutical-based treatments. I’d say the biggest issue right now is probably funding. We don’t have enough funding. I think lack of knowledge and lack of funding to establish that knowledge is a big issue.
Finances currently throughout the world are a big problem. We don’t have enough people from different disciplines. We have a lot of clinicians, which is really helpful. It’s all those allied healthcare professionals and basic scientists as well coming together. However, it’s evolving. It’s changing. The funding issue is probably always going to be there. This is why it’s really great to see that there are more femtech companies including yourselves. Working with private companies is going to be the future of research and I’m really big on impact and implications.
Research sometimes takes a long time and a lot of people with endometriosis want access to something that’s going to make their life better now. They’ve already waited too long. Lack of funding and how long things take at the moment to get to the patients are probably the two biggest things in my opinion.
Teresa Götz: Could you summarize your research for our readers? Like you said, exercise and endometriosis. Can you recommend something?
Luana De Giorgio: I’m at the very early stages and really important to clarify that my research is observational only. However, we have to start somewhere. Hopefully, though we will eventually get a bit more information that we can then make really clear recommendations on. I can come back to you in two years and let you know what my recommendations might be. What I’m doing for my PhD is, the first part of it is I’m looking at self-reported data from a really big survey and it’s an Australian data set.
It’s the Australian Longitudinal Study of Women’s Health. It’s an amazing women’s health data set and it has a large amount of women with endometriosis in there. It is all self-reported so it’s not necessarily going to give a great deal of information and it’s only collected once every three years or every year.
However, my first part is just looking at what levels of physical activity look like in women with endometriosis. Are they more or less active than the general population of women? Even if physical activity doesn’t have a therapeutic benefit for women with endometriosis, physical activity is still very helpful in reducing the likelihood of other non-communicable diseases. For example, type two diabetes and heart disease, which would also be helpful to reduce.
The first thing I’m looking at is that, because we don’t know what physical activity looks like in women with endometriosis. They’ve got a little bit of symptom data, I’m just having a look at whether different levels of physical activity might be associated with certain symptoms. For example, there are quite a few menstrual symptoms in there. Then for the other part of my PhD, I am collecting data with women with endometriosis, and we are collecting data using an accelerometer, which is a fitness tracker on physical activity and exercise.
We’re also using an app to collect data on their symptoms throughout the day over a few different menstrual cycles, not just one. We’re hoping to do three. However, the lack of funding and resources, it’s definitely a stretch. What we’re trying to do is I’m trying to understand physical activity from the accelerometer and the fitness tracker. That will give me an idea of how much they’re exercising and to what intensity. However, it doesn’t tell me what type of exercise and what type of movement it is.
Hopefully, through the app, they will also report the type of activity they’re doing. Whether that’s swimming, running, just walking or cycling, they’re all different ways of moving your body. The symptoms will also be tracked in real-time in the app and a wide variety of symptoms as well because a lot of the studies that aren’t necessarily endometriosis-specific missed quite a few endometriosis symptoms. For example, dyspareunia is a big one that’s often not collected.
Hopefully, we’ll get an understanding of the relationship between different forms of physical activity, different amounts, different intensities, and different symptoms throughout the menstrual cycle. That’s in a nutshell what we’re hoping to do. We’re starting patient and public involvement and engagement sessions.
Having patients and clinicians to help inform what the study is going to look like, exactly how often to collect data, and where to recruit people from. Making sure that the patients have a say and help shape the research is important, even if it’s just observational. They’re the ones that have to do the data collection. It’s right that they have a say in how they want to do it.
Teresa Götz: What do you think about digital self-help?
Luana De Giorgio: I’m a huge fan of digital health. I know here in the UK we have really bad access to women’s healthcare. I also think we’re moving towards precision medicine more and more and we are realizing that everyone’s different. Endometriosis is a great example of a condition where everyone’s actually really different. The way that the condition looks like in women is very different. The symptoms are very different, the severity is very different.
It would be a bit naive to assume that something’s going to work for everyone all the time. We know that’s not true. Digital self-care and digital self-help tools are super helpful because I think especially if you can track what’s going on with you and you can track your symptoms and what you’re doing in your life, and if there’s a pattern there that’s specific to you. That’s such a powerful tool. One, it empowers people with chronic conditions who sometimes feel like they don’t have that power over their lives anymore.
If it’s something that they can take control of, rather than just having to constantly go to a healthcare professional, which sometimes you also absolutely need. I’m not saying that it’s going to replace, but it’s a really powerful tool to have. It gives a sense of empowerment again and you can take back control of your life. It also allows patients, especially even with their healthcare professionals, to see what the patterns are and what’s specific to them, what’s going to help them with their symptoms in their life because everyone’s life looks very different as well.
It gives a precision that you just can’t get from a ten-minute doctor’s appointment once a year. It gives you such a good understanding of your body and how the condition looks for you. It’s such a powerful tool. We still need doctors, nurses, all the healthcare professionals, and pelvic pain physios as well.
Teresa Götz: Is there anything else you would like to share with those affected?
Luana De Giorgio: Just try to focus and really listen to your body. Even though that might not be great and not very nice, sometimes I think in any way that you can try and figure out the patterns of what’s going on in your life that might be really helpful. I know a lot of women already do. However, with self-management, you are the expert on your body. As we are trying to understand this more, there is nothing stopping the women from already tracking their symptoms and tracking what they’re doing.
I don’t want to say anything cheesy that you can hold on to hope or anything because that’s not very helpful. However, it’s been amazing entering this area of research. There are a lot of people who are really committed to improving the situation for women with endometriosis and anyone with endometriosis for that matter. There are definitely people fighting in your corner. There are people who are really fighting for their lives to be better.
I know it doesn’t help necessarily with your symptoms right now but there are people who are really passionate and are really, really bright people that are really trying to improve. Hopefully knowing that is somewhat helpful. All of us are so keen to work, with the patients because they are the experts.
Get involved if you can. Track your symptoms, try and get to know what works and what doesn’t for yourself, and just know there are a lot of us who are trying to improve and help in any way that we can.
Teresa Götz: That’s a very good message for the patients. A lot of people are getting to work together. Thank you very much for taking your time and for giving us exciting insights.
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