Current Research on Endometriosis: An Interview with Deborah Bush
“If we educate about menstrual health and endometriosis well and in a way that is appropriate mmedically responsible and fits the needs of students, young people, they seek specialized endometriosis care earlier.”
Editorial Note
The MNZM and QSM are titles bestowed on Deborah Bush by Her Majesty Queen Elizabeth II. The QSM in 2003 and the MNZM in 2017. In general it is customary to use them when referring to Ms. Bush in all her engagements. The editors highly acknowledge these titles, but have decided not to use them in the rest of the text for reasons of readability.
Nadine Rohloff: Hi and welcome. I’m very excited to be here today with Deborah Bush. Deborah Bush is one of the well-renowned faces in the endometriosis world. She is a small legend in New Zealand. Can you please introduce yourself briefly to our readers?
Deborah Bush: Thank you, Nadine. In New Zealand, when we are asked to introduce ourselves, we do that in our Māori language and I’d like to do that for you now. [speaking Māori] I introduced my mountain, the mountain that my pioneer ancestors climbed when they first landed here in Christchurch on a ship that arrived from England in 1850, called the Charlotte Jane. I referred to my river and said that my mother and my father were two really key figures in my life. While I was born and grew up in Wellington, my grounding place, I now live in Christchurch.
In 1985 I co-founded Endometriosis New Zealand. Since then I developed my own well-health coaching clinic called Endometriosis and Pelvic Pain (EPP) Coaching and Consulting. I run it through three Centres of Expertise for Endometriosis in New Zealand. I’m a senior ambassador for the World Endometriosis Society and in 2017 I founded the World Endometriosis Organizations (WEO), which I am the principal of.
I’ve also been invited to sit on the Data and Digital Council for the Ministry of Health, NZ. I resigned from my position as CEO at Endometriosis in New Zealand in 2021 as it was time to pass the baton and I wanted to concentrate on research, clinics and international work.
Nadine Rohloff: You did a lot of things in the endometriosis world. Thank you also for your Māori introduction. Let us start at the beginning. Can you tell us a bit about Endometriosis New Zealand?
Deborah Bush: Endometriosis New Zealand was founded by two other women and me. We met by way of chance being introduced by other people. The late Joan Moultrie was a senior management nurse with vast medical knowledge. Margaret McKenzie was in banking and a business woman, and I was a secondary school teacher with a dance and stage performance stage background.
We complemented each other very well. I think what made us quite successful was the unwavering respect that we had for each other and the fact that, while our own personal stories and journeys regarding endometriosis had been pretty rough, we genuinely wanted to stop others from going through what we went through by providing accurate education, information and support.
About Deborah Bush MNZM, QSM
Deborah Bush MNZM, QSM is a New Zealand women’s health educator and was one of the early pioneers in the field of endometriosis advocacy. She co-founded Endometriosis New Zealand and had notable influence on bringing the disease to the attention of medical researchers, government and society at large. Today, among other positions, she is Senior Ambassador of the World Endometriosis Society and Principle of the World Endometriosis Organizations. Her diverse work focuses on health promotion and early intervention of endometriosis in young people, her private clinics and national and international advocacy.
However, our stories quickly paled into insignificance when we started hearing other stories and, with the skills we each had, started to formulate different plans, programs and advocacy and established working relationships with gynecologists and doctors who really understood. In those days they were really few and far between. At the time no one seemed to have heard of Endometriosis, but it turned out that wasn’t the case.
When I went to my first World Congress on Endometriosis in Quebec, 1998, we realized that there were other groups from Australia, the UK, the US, as well as New Zealand that had started in the 1980s. We were all pioneers in the field. One of the first things we did in New Zealand was organize local and national seminars, conducted largely by ourselves as well as guest speakers. They were extremely well attended by people who had Endometriosis and their families.
However, there was very little research or literature for us to go on, only a couple of books and medical knowledge available at the time. In those days there was a renewed interest in the disease, though, as early advocates, we faced tough barriers and public/clinical resistance and there was no internet. We were recognized for some of our work and received the Commonwealth Award for Excellence in Women’s Health. We advertised in magazines and media. Interestingly, only a few medics at the time, really embraced and supported what we were doing.
I’d like to acknowledge those early clinical pioneers in New Zealand who supported our endeavours and vision and we became a Registered Charitable Trust in January 1994. We started growing the organization, initiating services and programs and developing the organization that it is today.
Nadine Rohloff: Now with the World Endometriosis Organization, WEO, you made a framework for all those organizations to come together and work as one. Can you tell us a bit about WEO as well? Perhaps other people or other support groups are listening that are not part of WEO.
Deborah Bush: WEO came about at the World Congress on Endometriosis in 2017 in Vancouver, attended by many organisations from around the world. We were functioning alone with little space or opportunity for collaboration or global ‘belonging’, support, sharing of knowledge and expertise, advocacy and research as there are for clinicians and researchers.
By popular demand I was given the mandate to establish the WEO following the WCE2017 Vancouver. At the moment, 45 organizations from six continents of the world are members of WEO. When we started out, we created a memorandum of understanding or MOU between the organizations which states the Terms of Reference. To be a member of WEO, each organization needs to be registered as a charitable trust and fulfill those obligations in their country.
The WEO Steering Committee likewise, has representatives from each continent. I’m incredibly proud of WEO and our achievements.
WEO is affiliated to the World Endometriosis Society and offers webinars, support and collaborative possibilities to advance research, encouraging big data through increased participation. We can have a collaborative effort across all facets not just in the organizations but in the medical and research fields. It’s a global voice. Another objective of the WEO is to provide some help and support to other organizations such as those from low-resource settings.
Nadine Rohloff: Looking at endometriosis care, you’ve taken matters into your own hands in New Zealand. Can you tell us a bit about your clinic?
Deborah Bush: My family was very community-oriented and were always involved with community projects and doing the right thing for others. I grew up having that can-do and positive community-minded attitude. Translating that over to my work with endometriosis, when I first noticed the massive gaps in care, I realizedthat it wasn’t just about medical or surgical management, but also about understanding the disease from a human perspective and acknowledging the suffering and human and societal cost.
My clinics are about listening to the patient’s story, providing support, knowledge, education and understanding and evidence based self–management to improve the person’s life and well-being. With those principles in mind, I had a discussion with a few gynecologists, and developed a professional working relationship with them to establish a well-health coaching clinic alongside what they were doing, which was probably the beginning of what we now understand as multi-disciplinary treatment and management.
I started EPP, Endometriosis and Pelvic Pain coaching in 2001, and the feedback from patients was just lovely. They continue to say they feel validated, more in control, understand their condition and have new tools to cope. I introduced a similar service and trained others through Endometriosis NZ. I believe EndoHelp is still going. Since then, I’ve been involved in research and am an author on several published works. We wrote an opinion piece a few years ago that was published, “Are we listening to patients?“. EPP coaching really reflects a big gap in holistic patient care.
My clinics are now part of a multidisciplinary team which includes specialist gynaecologists and allied health professionals, well-health coaching, pelvic physiotherapy, dietitians, clinical psychologists, and musculoskeletal specialists. My EPP coaching website explains it further.
Nadine Rohloff: Can you tell us a bit about the research that you did? What you described there with a multidisciplinary approach, that’s what experts are talking about. From each congress, we’ve heard more and more about all the things that we do apart from hormonal therapy and surgery. It’s important to have the rest of the professionals also help. What can you tell us about your research?
Deborah Bush: At the outset I’d like to say that I am not a trained academic but I’m often asked to contribute to research as an author because I come from an entirely different space that really reflects the patient’s voice, needs and diversity. In the early days I did surveys, assessing people’s needs, thoughts, and approaches to their health.
I used that material to create resources for Endometriosis New Zealand. I wasn’t based at a university, but over the years I’ve made connections with academic colleagues, and I’ve learned a lot from them about the research protocols and practices. I’m interested in research that is going to make a practical differenceto those with endometriosis.
I’m involved in several research projects at the moment, including social media influences, diversity, WERF tool, and adolescent education on the menstrual cycle and menstrual health.
Nadine Rohloff: Speaking about practical implications, can you tell us about the Menstrual Health and Endometriosis (me®) program?
Deborah Bush: The me® program started in 1997. It is a strengths–based well health program for secondary schools and originated from the national seminars we ran from 1985 to 1995. In those ten years of gathering information and listening carefully to those impacted by the disease, we learned that endometriosis usually starts in the teens and often from a person’s first menstrual period.
However as this was not supported in the literature, it was very hard to try and prove that schools needed menstrual health education for young people, let alone for endometriosis. We faced challenges and barriers, but I also had some great educational colleagues, so I started writing the curriculum, and had focus groups with local teenagers to talk about periods and share afternoon tea.
Their parents often joined in. I still have photos of us sitting around the dining room table at home having those conversations which at the time, were almost taboo. Around that time, I also started asking my family members, aunties and others and realized that, while they didn’t talk about it, it didn’t mean they didn’t suffer from severe dysmenorrhea. That was really the start of the me® program. With graphic designers from the local university, we put together the first schools age–appropriate brochure.
I also sat down with teachers and students from local secondary schools, and we discussed the contents together. In 1998 the program was piloted in ten schools. I remember distinctly the staff all attended at one of the all-girls secondary schools, seven of the staff members went on to seek assessment and were diagnosed with endometriosis. It was the students who drove the need really and their feedback showed just how vital menstrual health education was and how much they enjoyed the session.
The school staff and student feedback was so positive, so that by 2000, I was able to approach some philanthropic trusts and get funding to run the program in various places in New Zealand. It was still challenging getting it into a school for the first time, but we evaluated every session and we knew it was “hitting the mark”. Another indicator was that schools and teachers requested repeat sessions the next year.
I retained the governance of me® and trained the educators to deliver the program preferring that it was delivered by young people for young people. It reached about 300,000 students. The me® program was delivered through Endometriosis New Zealand and ran right up until the end of 2019 when it was stopped for assessment and because of Covid.
From our evaluation we could see that the needs of young people were constantly changing. Today we address more diverse communities and ensure inclusivity. The program has always been fluid and could change with the times and student/school/community needs.
Nadine Rohloff: Can you tell us about the research you’ve done on the program and its results?
Deborah Bush: We assessed the program after every session and gained some really good data which was published in ANZJOG, the Australian New Zealand Journal of Obstetrics and Gynecology in 2017. The study is titled “Does a menstrual health and endometriosis education program in schools really make a difference to early intervention?”. Through my private EPP Coaching and education clinics, I was able to gather data on the age of patients and whether they were presenting earlier. In 2001, the number of young people referred to my EPP Clinics made up twelve percent of the patients I saw.
By the end of 2019, sixty-two percent of those referred to me were under 20 and diagnosed. When questioned on how they came to present to their GP and be referred for specialist assessment, they often said, “We heard the me® program at school”and their parents often came with the brochures. That was really rewarding to hear. In my EPP clinic, I could capture that data. Longitudinally, from 2001 to 2015 there was a marked increase of young people presenting earlier with symptoms and receiving specialist care.
What we know is if we educate about menstrual health and endometriosis well and in a way that is appropriate, medically responsible and and that fits the needs of students, young people, they seek specialized endometriosis care earlier. It is about making young people feel quite comfortable about discussing menstruation, normalizing the conversations, recognizing symptoms that stray from the norm and improving health seeking behaviours.
There remains a paucity of literature on the efficacy of menstrual health education in schools and this research is the first of its kind to be published. We now know that if we recognize the symptoms early, we can intervene in a timely manner.
Nadine Rohloff: Is there a difference in the stories that you hear in your clinic depending on if somebody comes before their 20s or if they come for the first time when they’re 30? From your experience, does it make a difference in how they experience endometriosis?
Deborah Bush: Yes. What we found is that forty-nine percent of those young people under 20 with surgical diagnosis had stage one endometriosis. While generalising, what I found was, that while their disease was mild, their symptoms were actually quite aggressive. We now know that the clinical stage of disease does not correlate to the symptoms someone experiences. What remains patently obvious is the aggressive nature of symptoms often experienced by young people.
I think it’s demeaning and demoralizing to minimize their symptoms by comparing them to the clinical stage of the disease. Saying “it’s only stage 1” for instance as that’s often not how this group of patients were feeling. In my experience many young people have mild to severe dysmenorrhea (painful periods) but have not yet developed chronic pelvic pain where symptoms are experienced on most days and have lasted longer than 3 to 6 months.
When a condition has become chronic, it is much more challenging to treat and generally requires a multi-disciplinary approach. It’s hard to feel remotely normal when you’re experiencing chronic symptoms and regular acute pain flares. Increasingly and fortunately, we now understand more about the impact of these symptoms on mental health. Other complexities can also arise in their general health and well-being. Intervention before that point is very important to avoid the diesease becoming chronic.
It’s really encouraging to see changes in the guidelines such as NICE, ESHRE, RANZCOG and others reflecting this. I was instrumental in establishing a task force to develop the Clinical Pathway for the Treatment and Management of Endometriosis in New Zealand and the common thread is that “we must recognize the symptoms early and intervene in a timely manner.“ Now if only we were able to do achieve that globally!
Nadine Rohloff: Maybe there are a lot of patients listening as well, and people who want to become advocates and I hope they are inspired by your story. Do you have anything to say to all those patients listening?
Deborah Bush: Absolutely. Do not lose confidence in yourself and your self-belief. Your symptoms are real. It sometimes takes a bit of navigation to find your way through the maze to get a diagnosis and access best practice treatment and management. Support is always important. We also need to stop and reflect, particularly with a chronic condition, that, while good surgery to excise the disease is really important, it may not be the only answer to reach wellness.
I encourage you to think holistically. Think about your overall health, “What are my needs?”. This is what one of our research studies concentrated on as well. That might involve some real self-reflection and evidence-based self-help. We know that there are certain dietary aspects and that certain foods can irritate the gut and make the bowel symptoms worse. Start listening to your body to find out what those are.
Look at movement and do what appeals to you. Talk to your health professionals about the kinds of things that they can do to help you make a difference to your health and well-being. Ask whether pelvic physiotherapy would relieve those pelvic muscles that can spasm and whether you could work with clinical psychologist to iimprove coping measures. There are also a lot of online resources that look at what are simple movement you can do to ease endometriosis.
I often encourage people to do mindfulness at the same time together with restful music. Make sure you have a really good health team including your GP and people who care about you, like a support, a partner, mother, or father or friend. Your general practitioner and the specialist gynecologist are key as well as some of the allied health professionals depending on your symptoms, needs and wishes. A specialist health team can make such a difference to your health and well-being.
There are also all the organizations such as those members of WEO and social media. Choose the social media platforms that you think add value to your world and your well-being and be especially mindful of misinformation, disinformation and viewpoints that can be quite different to your own. There is one more thing that’s actually really exciting for me. Do you mind if I talk about that?
Nadine Rohloff: Of course. Please go ahead.
Deborah Bush: It relates back to the me® program. In 2019 and 2020, it was paused, as I discussed. The assessment took into account all aspects of delivery and whether it was still the best and most appropriate way to reach young people. For instance was it still ok for one educator, one car, going from one school to the next school, delivering the education program? Then there’s the pack down, the travel, collating all the evaluations and writing it up. Is that still the way that young people want to learn?
What we found from the research with the teachers and students and in cooperation with advisory groups of clinicians, researchers and young people, was that people really wanted the me® program, however they wanted it available as an online program. We adapted and moved it online and now it is called “What About Me?”.
The me® program is now used as a base for assisting others in various parts of the world who want to develop their own program. I’d love people to have a look at what we’ve done. It can be found at here. It addresses menstrual health and the menstrual cycle and is interactive and fun.
While it has a strong Māori cultural focus, there are lots of self-help things to explore and pratice as well. “Go in and have a play and see what you think.” There are lots of self-help things to explore and practice as well. You’ll find videos of young people talking and sharing their own experiences. It was so special to hear those young people articulate their views honestly. I’d love other people to go in and have a look and experience this learning and support.
Nadine Rohloff: Thank you so much for the interview and all the interesting insights in your work!
Expertise and individuality according to scientific standards is the be-all and end-all for endometriosis - in the endometriosis center and also at home for self-management.
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