2020, Responses from: Dr Jane Girling, Dr Anna Ponnampalam, Mr Michael East, Prof Neil Johnson
There’s so much happening in research in Australia and recently the Federal Government handed our another $10 million. So my questions is… is there any research on endometriosis happening in New Zealand?
Dr Jane Girling
The short answer, yes. Yes, there is research on endometriosis being undertaken here in Aotearoa New Zealand. And we hope the research base is growing. But perhaps we need a more informative answer.
Internationally, the amount of research on endometriosis has been growing rapidly over the recent decades. If we consider one of the currencies of science, publications in peer-reviewed scientific journals, the pattern is clear. I have just had a quick look on PubMed, which is one of the search engines we use to search for articles of interest. If I just search for ‘Endometriosis’, a total of 28,177 articles are listed. If I restrict that to publications in 1980 only, there were 196 articles. In 2000, it was 455 articles. In 2010, 1,103 articles. In 2019, 1,473 articles. And we will give 2020 a few more months to run before we look at that tally.
The thing about good science and research, including studies on endometriosis, is it needs to be international and collaborative, incorporating diverse skills and expertise from teams all over the world. Perhaps a good example is the research on the genetics of endometriosis – studies trying to tease out how our DNA contributes to the beginnings and the progress of the disease. This work has been done by a consortium of researchers from Australia, the UK, Japan, the USA and others. Without the international effort, the funding, expertise and large number of patient participants could not have been achieved. It is the combined effort that helps us make progress. That does not and should not exclude Aotearoa New Zealand. Even our little country (little in terms of population size I mean…) needs to play its part!
Another factor that makes it tricky to research endometriosis is the nature of the disease itself. If we need to get samples of tissue to work on, surgery is required, and I know none of you approach surgery without good cause. This is particularly true if we need samples from individuals without endometriosis. Further, because surgeons will remove all the lesions they can during a surgery, we cannot watch how individual lesions change over time. We can do lots of experiments with cells and tissues in the laboratory, but once cells are out of their microenvironment in the body without its blood and nervous supply and the surrounding cells and tissues, they just do not act in quite the same way.
From a symptom perspective, pelvic and menstrual pain is something we need to understand. Trouble is, pain is notoriously difficult to study, particularly visceral pain (pain caused by signals coming from our internal organs, such as the uterus or intestine). It is not something that we can easily quantify and we know that the nature of an individual’s pain does not necessarily match the extent of disease that a clinician might see during surgery. Someone with a few small lesions can still be dealing with wicked pain. Pain involves complex pathways in the body and brain that may often cause problems beyond the original cause or insult. That is not to say that endometriosis is a disease that cannot be studied, it just means us researchers have to be more creative. And the more people with different perspectives trying to be creative the better!
Endometriosis is a female disease most strongly linked with menstrual period pain. Historically, women’s health – female health – has taken a back seat. That is changing now, but we still have a way to go. My opinion, but there is still a tendency for many of us humans, particularly in the Western tradition, to be squeamish about anything related to menstruation. Can you see me rolling my eyes – yup, it can be a bit messy, but it is a normal bodily process and actually quite an amazing one if you consider what the whole process of menstrual cycles is about (preparing the body for a potential pregnancy). If a normal bodily function is causing problems, we do something to deal with it. Endometriosis should be no different.
So, now that I have jumped off my soap box, what sort of research is being done here in Aotearoa New Zealand. Since I returned to Aotearoa New Zealand a couple of years ago, I have been working with some amazing people to establish new projects. With Endometriosis New Zealand, we have just started to explore the unmet needs of individuals with endometriosis. This work is being done in collaboration with colleagues in Australia, but it is important that we also take a very particular look here in Aotearoa New Zealand as well. While many unmet needs are shared by those with endometriosis wherever they may be, there are also specific needs unique to every community. Aotearoa New Zealand is no exception. We are also starting to explore the nature of menstrual health in Aotearoa New Zealand – how menstrual characteristics change as you go from puberty to adulthood and the extent of menstrual problems in our community. Another study – not exactly endometriosis, but sort of relates – aims to look at the nature of reproductive knowledge in our young adults. How much do they actually know about menstrual cycles for example? We are also just starting to explore the potential interactions between endometriosis and PCOS (polycystic ovarian syndrome). I am also still collaborating with the team at the University of Melbourne and Royal Women’s hospital studying the heterogeneity (I love the sound of this word. It means diverse, non-uniform, dissimilar) of lesions and disease phenotype (characteristics we can observe; e.g. size, shape) in individuals with endometriosis. This is just an overview of the work I am involved with – it is not a national summary. There are several great research teams considering different aspects of endometriosis, including teams in Christchurch and Auckland. As further examples, I will pass over to Mike, Neil and Anna to summarise the work they are involved in:
Dr Anna Ponnampalam: “I am a reproductive biologist at the University of Auckland who is trying to understand the epigenetic changes in the development of endometriosis. Epigenetics (means over and above genetics) mechanisms control which genes are expressed or stopped at certain times and can be passed down from parent to child even though they do not change a person’s DNA sequence (think about differences in identical twins). I believe abnormal epigenetic changes to DNA might in part play a role in the development of endometriosis and am researching to find out more. I am also interested in investigating menstrual blood to determine whether I can find any unique molecules that could be used to diagnose endometriosis easily.”
Mr Michael East: “I have a 2-3 year study looking at inflammatory compounds such as various cytokines and reactive oxygen species (ROS) to name but two. I have so far recruited 41 women out of 100 needed. Women with endometriosis have been shown to have increased levels of inflammatory compounds in their peritoneal fluid. Such compounds are thought to be responsible for many of the symptoms of endometriosis including sub-fertility. I am attempting to show that excision of endometriosis results in lower levels of such compounds in both the peritoneal fluid and the blood stream. I am working with post doctorate scientist Teagan Hoskin. Approval for the study has been granted by the local ethics committee.”
Prof Neil Johnson: “Most of my work is based on international collaboration. Our main research thrust at present is in network meta-analysis and, having completed a network meta-analysis that examined all fertility treatments for women with endometriosis, we are in the throes of undertaking network meta-analysis for treatments for pain and quality of life impacts for women with endometriosis. This will allow direct and indirect comparisons of all treatments that have been truly assessed by randomised trials and it will allow us to develop a hierarchy of effectiveness of these treatments. Our other research is involved with developing criteria for networks of expertise in endometriosis, which will link in nicely with New Zealand’s new Pathway of Care for Endometriosis, as we endeavour to attain better structure of care for endometriosis in New Zealand. And of course, I’m always working on lipiodol, as the most important research discovery in advancing fertility for women with endometriosis that I’ve made in my career.”
So, yes, there is research going on endometriosis in Aotearoa New Zealand. We may not be huge in number, but we certainly hope that our local researchers punch above their weight in their efforts to understand this disease. We recognise the trauma of living with a chronic reproductive condition; we acknowledge the pain that you deal with on a daily basis. But please be patient with us. Everything takes so much longer than we hope – especially research. Nothing good is ever easy, but we are working on it! We all hope that breakthrough is not too far beyond the horizon.
Ngā mihi nui.