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In this episode with Donna Ciccia, we discuss some of the inroads made for putting endometriosis on the map, along with some of the latest collaborative research projects for clinicians, patients and researchers. 

From ultrasound research and AI, mental health, workplace, and tech support for endometriosis patients, this podcast offers an insightful update on coming together for raising awareness. 

Complementary medicine and Allied healthcare approaches are discussed, particularly highlighting individual approaches for endometriosis management. Do we need a 'village' approach?

Transcript Jacqui Fahey (00:01):

Welcome to Common Ground, a weekly podcast, discussing new research and interesting projects in the field of complementary medicine. Hello, my name is Jacqui Fahey from Common ground.

830,000 women today are living with endometriosis. Endometriosis affects all aspects of women's lives from social activities, relationships, work, attendance, and productivity. Endometriosis is reported to cost Australian society $9.7 billion annually, with two thirds of these costs attributed to a loss in productivity. March is endometriosis awareness month and today on Common ground I have with me, Donna Ciccia. Donna is the Co-founder and Director of Endometriosis Australia and was named in the 2018 Australian financial reviews 100 women of influence. Donna is a member of the Federal Steering Committee for the implementation of the National Action plan for endometriosis. Welcome Donna.

Donna Ciccia (01:03): Hi Jacqui

Jacqui (01:04): Donna, there has been poor awareness of endometriosis with over half of Australians, having never heard of this debilitating disease, some inroads have been made for putting endometriosis on the map, where are we at now with the research and awareness?

Donna Ciccia (01:24): Well, there's been a lot of research going on recently in the awareness and in to reducing the delay of diagnosis and how we've got to that stage. We've got some nice areas with the MRFF grant that was put out last February I think. We've got some areas of research going on in FODMAPs diet and in yoga, so trying to broaden that toolkit for evidence for different treatments and support that we can put in for endometriosis patients. We've also got those other big questions, you know, like what causes it and all of those medical cellular based type research. And we've also got a really exciting one, which is a ultrasound research looking into deep infiltrating endometriosis and AI. So that will be really quite interesting to help rural and regional centres as well. And there's a lot in mental health going on, some research looking at mental health and there's also some that I'm involved in, you know, we're looking at workplace and tech support and those types of things for endometriosis patients.

Jacqui Fahey (03:00): Fantastic and that's very inspiring to hear, Donna what is MRFF? What was that?

Donna Ciccia (03:06): Oh, the medical research futures fund.

Jacqui Fahey (03:09): Fantastic. Okay, great.

Donna Ciccia (03:11): We've had quite a bit of money over the past years. So I think around 15 million altogether to going for NHMRC, which is another research fund with the Federal government and the MRFF, which is another Federal government, but there's also Endometriosis Australia has given out a hundred thousand dollars in research grants. So that went to four different researchers. And we know that there's even cannabis studies with endometriosis as well. So there's quite a lot going on the smell of an oily rag mind you, it would be great if we had some serious investment on parallels to other diseases that have the same or if less numbers, the more endometriosis attracts. So you know, a lot of them at their baseline is around $20 million a year and our $15 million was spread out over five odd years. So it would be good to have more money to find more answers.

Jacqui Fahey (04:12): Agreed. So as you know, we are aware that there are delays in the diagnosis, it’s very common,  where are we at now with the average time from onset of symptoms to diagnosis?

Donna Ciccia (04:26): Traditionally we’ve said that it was 7 to 12  years, so in the past, it's been seven to 12 years delay in diagnosis on average. The newest research went and there were two different separate researchers that delved into this. The results came through late last year and they actually supported each other in the fact that the delay in diagnosis is now being reduced down to six and a half years and that is since 2013. So Endometriosis Australia started in 2013. So I'd like to think that we've had some hand in helping reduce that delay in diagnosis from the twelve years down to six and a half. Is that acceptable? Absolutely not. It's still a long time to wait for a diagnosis so we can do better, but I think raising awareness will help create a better understanding for the general community of what endometriosis is.

Jacqui Fahey (05:26): I agree that this is still quite a lengthy period of time, as you said, it has shifted down, but there's still quite a road to go isn’t there.

So what is the National action plan now? There are some priority areas within this space?

Donna Ciccia (05:44): Yeah, the National action plans is two years in. We've actually, well quite a lot has been achieved and whilst on a public level, it's not, you know, we haven't out with all the bells and whistles and fantails to say this has all happened. We’ve checked off quite a lot on the national action plan list, but we've still got a little bit to go. So awareness and education. So there are some early education in school programs that have been rolling out in South Australia and I think some in Western Australia and then that's, then we've got also filming, you know, CAM ad campaigns, had gone out, so they've all been completed at this stage. The clinical care, I think is probably one of the, the great ones that are it's, it's like the standard of care.

Donna Ciccia (06:46): So it's for clinicians to know the clinical pathways. So if someone presents with X, Y, and Z symptoms and, you know, it's sort of leading them down, the clinical pathways we ran score, released, I think it's called ‘rate tool’. We've got it on our website, I'm sorry, I can't quite remember the name of it, but there is a tool to help people can take it to, you know, take the quiz to see if they are likely to present some queries that need to have further investigation. So those kinds of things are quite good. And we've also got the research in that collaborative research in things like,  the collaborative research in ‘next network’. So this is where we've got clinicians, patients and researchers all coming together to build the National Endometriosis scientific and clinical trials network. So we'll be able to pull in data and clinicians are now being enrolled and that's going to start rolling out soon for clinicians and their patients. So it will be able to, it's kind of a bit like a longitudinal study. You know, we'll collect this data in a central repository and then researchers can utilize that facility to help unlock all those puzzles of endometriosis.

Jacqui Fahey (08:18): And is that accessible for practitioners through Endometriosis Australia.org?

Donna Ciccia (08:26): The next network is, is clinician based. So it's starting, it's a first small trial, so it's a whole big scientific research thing at the moment. So it'll, hopefully we'll be able to incorporate more practitioners as it grows.

Jacqui Fahey (08:40): Fantastic. Look forward to hearing an update on that and good timing. Yeah.

Donna Ciccia (08:45): It's a good way to collaborate I think.

Jacqui Fahey (08:47): Think absolutely much needed isn't it? Yeah. So, surgery is the current gold standard of treatment, but despite successful surgery, many women still find their pain symptoms can return within about five years after surgery. So for our complementary medicine practitioners, what are some approaches for management you could suggest or are aware of?

Donna Ciccia (09:12): With surgery, whilst it is the gold standard, we prefer is the least amount of surgeries, the better for patients in the respect that you want to have one good surgery done well. So find someone who has a really good background and good experience in endometriosis and uses excision and you know, all those other techniques that they need to give the best outcome to patients. The recurrence rate with endometriosis is 30% recurrence on average in five years. And you can still be disease free, but not pain-free. So there's a lot of pain specialists working on the whole neuralback as well. So as far as complementary practitioners go I think there's a whole heap of things that we can do, and I know different modalities will have different approaches. So it might be acupuncture to help down, damp down, or kind of, it's probably not the worst right word for acupuncture, but tame down those excitability of the nervous system. And you've got, you know, nutrition following anti-inflammatory protocols, looking at FODMAPs looking at different herbs that will do those similar things to help reduce inflammation. And maybe I think what puts complementary medicine practitioners ahead is that they have the time to understand their patient, to do that full lifestyle evaluation and how, what are their symptoms and how can they support that person? Because not everyone with endometriosis has the same symptoms, you know, depending on the location of the disease can also very much dictate what their issues are. And we know that there's also Allied therapies like pelvic pain, physiotherapy, and, you know, relaxing the muscles that are short and tight and those ligaments. So I think if we I like to think we need a village. So surgery is the gold standard. Everyone else has a role to play. And sometimes patients, we've got to go through a lot of different practitioners to find our right click with our right team. But I know for myself, you know, I go to the osteopath when I need to, I go to the pelvic physio when I need to, I go to the acupuncturist when I need to. So it's sort of like you, you pull on your different modalities depending on your symptoms.

Jacqui Fahey (12:00): Agreed it's a holistic solution, isn't it. And quite often some women have had multiple surgeries, haven't they for endometriosis?

Donna Ciccia (12:11): I’ve heard some horrific stories of 40 plus surgeries. And if you know, if someone tells you, you need to have a surgery every six months or twelve months, then you might need to, you know, get another opinion weigh out that repeat surgery process because of that excitability of the nervous system. So you know, some people have a really aggressive disease and so there are limited options, but I think that's where, you know, the complementary medicine can come in and support those patients that are going through that situation. You know, if you've got bowel problems or if you've got bladder problems, you know, practitioners are so well equipped to support that.

Jacqui Fahey (13:00): Too true. And often along with the sort of nervous system effects, there is scar tissue, isn't there for women quite often, women are doing from the multiple surgery dealing with scar tissue and then surgery is sort of off the cards as well?

Donna Ciccia (13:17): Yeah. Yes, it is. It is scar tissue is an issue and some people suffer from scar tissue and scarring and much more than others. So it's not like a blanket thing for every person. You know, it's you have to go back to that principle of complementary medicine, which is treating the individual. And I think we're best placed to do that. And even things like microbiome, you know, we know that plays such an important role, not with that with, you know, with mental health and with you know, diet, your bowel motions and your bowel health and anti-inflammatory motion. So there's a whole heap of different things that complementary medicine practitioners can support their patients with or clients with.

Jacqui Fahey (14:13): And with regards to cannabis. Have you heard any of the latest research with regards to that for alleviating pain? As an analgesic effect?

Donna Ciccia (14:22): I think some people have had good results, but it, there is no, there's research that is being undertaken at the moment, so that has not, we haven't had that published yet. So I, whilst there's a lot of good anecdotal stuff out there is also the exact opposite. Some anecdotal evidence people are saying they not having good results, but it also depends on what it is, the THC:CBD ratios, all that kind of stuff, which I know that NICM are doing a research project on. So I'm really looking forward to getting all of that evidence so that we have a bit of a better pathway and a bit of information that can go to practitioners that they can support patients in when they undertake these different therapies.

Jacqui Fahey (15:23): Fantastic. March is Endometriosis awareness month. What have you got on the cards for this month and the near future?

Donna Ciccia (15:29): We do have a jam packed month, I’ve got heart palpitations at the whole thought of how much we’ve got on in March. We have quite a few different campaigns. We've got a release, we do these medical webinars in different areas of endometriosis support. So we have four new webinars coming out during March and April. We've got a new thing we're trying for online discussion. And we've got a Endometriosis Australia symposium for Endo March because normally we have our lovely high teas, but due to COVID, we cancelled 2020. 2021 wasn't going to happen in a face-to-face situation, so we're doing an online symposium. So tickets will be released soon. It is extremely affordable and it will have some things that are for patients and some things that are for clinicians as well. So I think there's a lot to learn out of the symposium. So that's on the last weekend of March and we have our podcast rolling out every week and blogs. So there's so much information and we've got a wonderful campaign called ‘Endo enlightened’, and we've got councils all around the country, lighting up assets within their town and their city, yellow, to raise awareness for endometriosis. So we want everyone out there hashtagging taking photos in front of it and saying I'm ‘Endo enlightened’.

Jacqui Fahey (17:23): Fantastic. Thanks Donna for a very interesting update from a research, collaborative perspective and some ongoing awareness for endometriosis. So if you want to find out further information, please do check out Endometriosisaustralia.org. Thank you again, Donna.

Donna Ciccia (17:39): Thank you.

Resources discussed in this podcast, visit: Endometriosis Australia