Current Research on Endometriosis: An Interview with Dr. Samantha Mooney
“Good research comes not only with good study design but participation.”
Teresa Götz: Welcome, could you please introduce yourself to our readers briefly?
Dr. Samantha Mooney: I’m Doctor Samantha Mooney, but most people call me Sam. I’m a clinician practicing obstetrics, gynecology, and fertility medicine in Melbourne in Australia. We have both private and public health systems in Australia, and I work across those in clinical medicine, research, education, and training.
Teresa Götz: How did you come to research endometriosis?
Dr. Samantha Mooney: I’m a clinician and specialized as a gynecologist in minimally invasive surgery. In my job it became quite apparent that most of my work was in the endometriosis space. Naturally that came with research questions and there were questions patients would ask me that the literature didn’t have an answer to. This lack of knowledge was really frustrating to me. Today I still am a clinician, but also a clinician researcher trying to find those answers for my patients.
Teresa Götz: What motivates you in your work?
Dr. Samantha Mooney: The latest study in Australia is that one in nine people assigned female at birth will suffer the symptoms of endometriosis in their lifetime. I suspect that a lot of the variation in incidence across the world is based on diagnostic access rather than true differences in the condition, so it is similar throughout the world.
About Dr. Samantha Mooney
During the 15th World Congress on Endometriosis in Edinburgh, Teresa Götz, the psychologist of the Endo-App, interviewed Dr. Samantha Mooney from Australia. As a gynecologist and researcher, Dr. Mooney is passionate about making her work accessible to patients, encouraging them to participate in the research needed to improve knowledge about endometriosis.
Endometriosis is a health problem more common than asthma and diabetes and yet there’s not a similar amount of research put in. It’s up to people to put their hand up and say this is a big problem that deserves some attention.
Teresa Götz: In your opinion, what are the biggest challenges in the field of endometriosis?
Dr. Samantha Mooney: Firstly, we’ve got issues of funding. It is any researcher’s first complaint that there’s not enough funding for the studies we want to conduct. However, over the past 30 years in women’s health research funding was really discordant to what is applied to conditions that affect both genders, or men alone.
Secondly, the conduction of research is a lot trickier because endometriosis is a chronic disease. When diseases afflict patients for decades, longitudinal studies are required. In comparison, short term studies spanning over a few months are easier and cheaper to conduct, and easier to publish and announce.
Thirdly, the disease is a challenge in itself. Endometriosis affects multiple organ systems, and it presents very differently for different patients. For instance, the experience of pain as a symptom is different patient to patient and is not necessarily disease specific. We label the pain as related to endometriosis, but we don’t fully understand whether it is caused directly by endometriosis, if it’s caused by a downstream effect or whether is a separate condition not related to the finding of endometriosis.
Even on a disease level, endometriosis is a spectrum of diseases. The label “endometriosis” makes sense at a level that I can explain to patients that it’s endometrial tissue, tissue from the lining of the womb that is existing outside the womb. However, there probably are several entities. Does the disease sit on the surface of tissues, is it deeply embedded within and forms nodules or does the disease escape outside the pelvis and is in the lungs, the nose or the liver?
We don’t fully understand the spectrum of disease, and that complicates research and treatment. Additionally, assessing the impact on fertility and pregnancy is tricky at both a study design and because these are particularly intimate and emotional topics for patients and require a special approach to study.
Teresa Götz: Could you summarize your research for our readers?
Dr. Samantha Mooney: My work can be separated into three. Firstly, one study is looking at obstetric outcomes for women who have got moderate and severe endometriosis. There’s a lot of emerging evidence that endometriosis is not only important for fertility but also pregnancy outcomes. With the Endometriosis Longitudinal Fertility Study (ELFS) I’m trying to nut that out in a forward design rather than looking backwards on people’s pregnancy outcomes.
Looking forward allows us to control at what age and how they conceived. It also controls whether they’d had their endometriosis treated before they fell pregnant and whether they were suffering from other conditions at the time. To facilitate the data collection on both sides, we designed a study app, trying to overcome the hurdle of longitudinal studies. It has to be made easy and ubiquitous for the patients that I ask them a few questions repetitively every month to get the data that I need.
The app-based study follows the long-term fertility, and then we’re linking their obstetric outcomes. Data from hospital admissions and pregnancy outcomes are forwarded to a central data set that we as researchers can then access.
My second area of work is looking at the persistent pelvic pain domain. 50 to 80 percent of patients with chronic pelvic pain are attributed with endometriosis but not all of them have endometriosis. Endometriosis might be the cause of pain, but the pain might also be a response to some sort of trauma at a muscular or neurological level, for example a painful pap smear or painful cervical screening test as the first test.
As a response there can be migraines and abdominal migraines and that turn into chronic pain. We performed a study where we watched patients for three years and followed their treatment outcomes over time.
The third area is a project looking at a novel measurement that may assist with endometriosis diagnosis. Endometriosis affecting the ovaries can cause cysts, as endometriosis affecting the bowel cause a nodule. These forms are relatively easy to diagnose via ultrasound scanning.
However, the superficial endometriosis or the endometriosis that exists just on the layer of peritoneum or the film layer on the pelvis is very tricky to pick up on ultrasound. We are searching for a test that can help patients work out the likelihood that they’re going to have endometriosis without them needing to go through surgery.
It’s not performing as well as I would like it to. We’ve probably got to look at a few other things to be added, but it’s another step in the direction of a non-invasive endometriosis test.
Teresa Götz: Could you say for each project how your work contributes to improve the lives of people with endometriosis?
Dr. Samantha Mooney: For the ELFS study, the main goal is to determine whether surgery in cases of moderate or severe endometriosis impacts fertility. As of now, I can’t answer patients whether we should remove that endometriosis before they try to conceive. Will that make them more likely to conceive naturally or to conceive successfully with IVF? We don’t know.
We currently decide based on their symptoms. If they are suffering, we offer surgical management, but we don’t know whether this improves fertility. Our goal for the pain projects was to get an understanding as to what treatments work over time, so we followed patients for three years. I want a treatment to work long term for patients and I’m working out what that looks like.
Then thirdly, the ultrasound study is trying to work out a way of diagnostics through imaging. We want to create an algorithm or a calculator even that allows to determine the chance of having endometriosis based on all the given information. We’re trying to find better ways to diagnose patients without them having to undergo surgery.
Teresa Götz: What are your future research goals, are there new projects in the pipeline?
Dr. Samantha Mooney: The ELFS fertility study is a long-term project that’ll take me at least seven years to complete. We will eventually get the answers. It may not help some of your readers who are making those decisions now but hopefully it will help your younger readers to know what to expect concerning fertility. We’re also hoping to follow up the obstetric outcomes, trying to work out when patients with severe endometriosis do conceive.
If we know that removing that endometriosis before you conceive is important for reducing your preterm birth risk, your high blood pressure, and pregnancy risk, or the risk of having a small baby, then maybe that’s another reason to operate before you conceive. The counter to that is if we realize that it doesn’t matter if you have the endometriosis removed before pregnancy or if it’s still inside. Maybe then for people working in the obstetric or the endometriosis space the question arises, what is it that ties endometriosis to preterm birth?
It may allow for people to look at, is there something we can do to reduce pre-term birth further? Can we find something that’s happening in people with endometriosis, whether it’s inflammatory or genetic or epigenetic, that then could make a difference downstream for things like pre-term birth? At the moment we’re still a while away from that, but this might be the direction it’s headed.
I’ll also continue to work in the pelvic pain space. As a gynecologist it’s heartbreaking for me to see that there are still so many patients suffering from pain.
Teresa Götz: What do you think about digital self-help, as for example the Endo-App?
Dr. Samantha Mooney: My first foray in the utilization of apps for endometriosis has been in developing and using the ELFS app as a resource to collect our data. Rather than an app to disseminate information, it’s purely for research purposes. I think the patients want anything that we can offer them to be able to self-manage their symptoms.
They want to feel empowered and have access to the information they need. People so used to be able to look something up on their phone. If they’re having a symptom, if they’re having a bad day or a really nasty flare of their symptoms, it is great to have the ability to access their mindfulness app, their list of medications or a video on some stretches or exercises they could do for relief.
You could work into that app that allows them both education and access to resources to empower them at times they need it. I think it’s very valuable. Smart phones have only been in existence for a very small amount of time compared to the long-term nature of health care. Yet they have so fast become a part of us and a device that patients trust. It’s part of something that they use all the time.
I absolutely think it is exciting and something that the patients seem to want. Apps in this area need to move towards a sort of coordination of care between practitioners. Endometriosis is a multidisciplinary condition and if in the app space, something that could be designed that allows patients to coordinate their appointments but also have the ability to put the letter from one doctor in that app and the advice from another. Just so they’ve got everything in one space.
Teresa Götz: I have one last question, is there anything else you would like to share with our readers and endometriosis patients?
Dr. Samantha Mooney: I’d like to give them hope that this disease is getting looked at. My research is longitudinal and takes a long time, because sadly there are no quick answers. However, I hope it helps them to know that there are so many people working on it.
Hopefully the small steps we take are steps in the right direction that will have outcomes for patients. Any way they’re comfortable to be involved in research will help to increase the ability to get some of these answers because good research comes not only with good study design but participation.
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