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Endometriosis: on the front line with Donna Ciccia

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Endometriosis: on the front line with Donna Ciccia

With an estimated 1 in 10 women suffering from endometriosis, this condition is a major health and economic drain, not to mention the mental health aspects, which can be devastating.

For too long, women with endometriosis have had to suffer in silence, regularly dismissed by their medical professionals, family and peers who often don't appreciate how debilitating this condition can be. Now, the tide is turning, with Donna Ciccia championing the cause.

Donna is the co-founder of Endometriosis Australia, an organisation that is dedicated to putting endometriosis on the map. In today's podcast, we delve into how Donna Ciccia's personal journey with endometriosis has driven her passion to ensure that the next generation of women can access standards of care that put an end to the long term suffering many others have had to endure. 

Covered in this episode

[00:33] Introducing Donna Ciccia
[02:15] Becoming an endometriosis crusader
[05:54] Getting the endometriosis conversation started
[09:26] The role of Endometriosis Australia
[11:29] What are the statistics of endometriosis?
[16:17] Aetiology and pathophysiology
[18:31] Inherited genetics
[20:30] Treating the individual
[22:58] Getting the terminology right in endometriosis
[28:10] Sourcing experts
[29:24] Endometriosis research 
[35:50] What role can natural therapies play?
[39:46] The complexities of pain management
[45:05] Is stress an aggravating factor?
[48:24] Suggested resources and additional education

Andrew: This is FX Medicine, I'm Andrew Whitfield-Cook. Joining us on the line today is Donna Ciccia, who has worked in many facets of the complimentary health industry including private practice, retail, training, marketing, management, and wholesale since her graduation in Classical Homeopathy and Nutrition. 

Donna is importantly, the co-founder and director of Endometriosis Australia, a charity founded in 2012 and operated for the past five years. Donna volunteers full time for the charity and has developed a diverse set of skills as the Operational Director. Donna has experienced in not-for-profit governance and works with many state and federal government Australian Departments in Australia. Her establishment of the ambassador program for Endometriosis Australia has led to the development of the Friends of Endometriosis parliamentary committee, a federal bipartisan approach to ending the silence on endometriosis. 

And I'm just going to give a big round of applause right here. Donna has played an integral role in the development of the national action plan for endometriosis and has been named on the steering committee to oversee the implementation of the plan. And she's recently been named in the Australian Financial Review’s 100 Women of Influence in the social enterprise and not for-profit category. 

Welcome warmly to FX medicine, Donna Ciccia. How are you? 

Donna: Very well, thank you. 

Andrew: You've done a lot. That means you don't have a life. 

Donna: My husband likes to say that I volunteer eight days a week, so, um, yeah, busy. 

Andrew: I've been talking also to a colleague and friend of yours, Dr. Mike Amour, about it's not just a passion. You are a warrior for endometriosis. You will break down doors and finally, in Australia, you have done so. There is breakthroughs that we're seeing now. 

But first, can you take us through a little bit of your history because we need to really backtrack and get an idea of why you have this burning drive to end the myths and poor management of endometriosis in Australia? 

Donna: Well, I suppose it starts with me. I was diagnosed with endometriosis, not until I was 31 years old. And my first symptoms started at about 16. So I, along with Professor Jason Abbot and a few others decided that, you know, enough was enough. And I think Jason and I had spoken about it 10 years prior to actually starting up the organisation. We had to be in the right place, I suppose, in the right time in our lives to be able to put all this energy and effort into it. 

My disease was quite advanced and quite unusual so I didn't want women to have to keep going through this. You know, the next generation of girls shouldn't think that period pain is normal. And that just simply is my goal, is the next generation of women. You know, we're paving the way so they don't have to suffer in silence and they don't have to feel alone and isolated, and that we can implement a good standard of care. And that's just simply how I feel about it all.
Andrew: And what drove you to studying nutrition? What was it that particularly drew you to that as opposed to researching something else?

Donna: I think that nutrition and homeopathy had helped me with a lot of, what I now look back and say was simple disorders. And like most people that go into natural therapies and wanting to study it, is usually a self-healing along the way. 

Andrew: Yeah, yep. 

Donna: So I, as a young person, I suffered from severe eczema all over my face, and all over my body. And I went and did some small little homeopathic first aid courses up in Cairns, and that sort of sparked that interest for me and that understanding. So I decided to, in my late 20s, to move to Sydney and study nutrition and homeopathy, and that was an eye opener for me. And at the same time is when I decided I'd go all natural and get off the contraceptive pill…

Andrew: Right. 

Donna: And because that's how I felt was a good thing for me to do. 

Andrew: Yep. 

Donna: It's not necessarily everybody else's choice. But for me, that was what I wanted to do. And then all hell broke loose with my endometriosis. 

So the symptoms were… reared their ugly head in a not so pleasant way. And so, I then went on another journey of self-healing with endometriosis and started to investigate that. And I even made my surgeon record, and I think this is the days of VHS, so that's saying how old I am. 

Andrew: Oh, one of those things. 

Donna: One of those things. And I made him record my, the first surgery he did on me. So by then, when, and showed that around, I studied at Nature Care College, and I then did like show and tell.

Andrew: Yeah. 

Donna: And talked about endometriosis then and showed my film and what was happening and how they resectioned the disease and things like that. 

Andrew: That would've been a very challenging and confronting thing for you. But I guess, also empowering to a way to say, "Look, guys. There's more to this that we really need to wake up about." So how was it handled back in those days? How was endometriosis thought of, and I'm going to say, not talked about? How were women treated? 

Donna: I kind of lucked out, you know? If we were talking about endo lottery, I won the endo lottery. I got Professor Jason Abbott to be my surgeon within the public system. So he was doing endometriosis excision. And so I was really lucky, one of the very lucky ones that got good care from the get-go. 

I was in denial for a long time about what was going on, and I wrote assignments on it, and I made booklets and I showed Jason these booklets that I'd made. He goes, "We need this. No one is doing anything." And he likes to say that he was a lone man jumping up and down to...or a lone person jumping up and down to get attention to endometriosis. And now that there's more jumping up and down to get attention, which is the good thing is we're all coming together. 

Andrew: Can I ask then? What would you say as a call out to women and also all integrated practitioners who have or are treating women with pain?

Donna: I think there's a few myths that need to be addressed. And I think we have a very good website at Endometriosis Australia with all evidence-based. And I know that sometimes that word gets a bit bandied about. But we have really good information. We don't put up anything that isn't factual, and that, you know, we keep straight to the facts. 

Do we know everything about endometriosis? Absolutely not. But get a good understanding and a good grounding and then listen to some of the women and hear their story. I think that usually is the first part that women need and they need to be validated because for years they've never been validated with their pain or their suffering. 

Andrew: Absolutely. 

Donna: So that's the first thing we can do as practitoners is to listen and understand and give them the time because no doubt, they'll cry. And I think every time I give a speech somewhere about endometriosis, I have women crying because someone understands them and gets them. 

Andrew: Yeah. 

Donna: And I often want to jump off the stage, jump into the crowd to give him a hug to say, "It's okay. You're not alone." And, first line...

Andrew: Which in itself is a travesty of medicine, I’ve got to say, you know. 

Donna: Yeah. It's a travesty of everything. And I think we, even society, you know, like as I was saying the other day, if a woman went in and said, "I'm having a bowel resection due to endometriosis." One, no one's going to ask, "What's endometriosis?" And two, they're not going to say, "Well, you know, yeah, whatever. Bowel resection, that doesn't sound so bad," because they don't know what endometriosis.

But if you said, "I'm having a bowel resection because I've got cancer," you would get empathy up the wazoo. So, what we need to do is give those women that empathy and understanding because they're going through 10-hour procedure that might end up with an ileostomy or colostomy bag. So we need to give them that understanding, that care and that empathy, and then support. And that's where natural medicine comes in and complementary medicine comes in so well. We can support them through that. 

Andrew: I want to go into the aetiology, the pathophysiology and indeed the terminology that we need to use a little bit later, but just for now, what about the role that Endometriosis Australia plays both in the national landscape as well as the global landscape? 

Donna: National landscape, we are a national body. So therefore, we are gathering everybody to use their voice, and we're listening to those patients when they come forward. We're also helping them educate and within their communities, educate. We've been in discussions with certain remote or rural groups and getting their understanding within their own communities, encouraging women to get together and to have the support within themselves and within their groups, and within their town, raise awareness because their voice will get heard. And if you gather the crowd together of women with endometriosis, then your voice will get heard. Being a lone person, it usually doesn't get heard. 

We also need to educate medical staff, so whether it's emergency medicine, whether it's nursing, whether it's paramedics, whether it's doctors, GPs through to specialists. That's the role that the national action plan will have and we've got some really good frameworks of where they want to go with the implementation of the National Action Plan. So that's really good. 

We're not meeting until early November. So the steering committee won't decide on how and what first, but the government's released some interesting information of, Minister Hunt's office has released that, I think 400,000 is going towards educating nurses. So there'll be a whole unit in nursing colleges about endometriosis. Not just a sentence or a paragraph, but a whole education unit, which is really good news. 

Andrew: So I mean, obviously the reason is because this is so common. So let's talk a little bit about the incidence or the prevalence of endometriosis. What are the stats? 

Donna: The stats we have today is 1 in 10. Do we need more research to validate those stats? Absolutely. We know that there is over 730,000 women in Australia today that have endometriosis. It will start...

Andrew: Diagnosed? 

Donna: Diagnosed is different to the estimated stats…

Andrew: Oh, got you. 

Donna: And there's no one code for us to have that diagnostic. So, you know, that's money and research. 

Andrew: Now, that's an interesting point when you're talking about the code. You're talking about a medical code of diagnostics? 

Donna: Well, there's no one, you know, different treatments. And so, I don't know what they... We know that like, the women's longitudinal study would have a lot of information in there, but we haven't got anyone that's mining data to just look for endometriosis. So that's another cost. 

So there's all these... We have a lot of data out there. We just need a lot of money, time and expertise to mine that data. But we also need to create new studies and implement new structures of how to report and diagnose endometriosis. And a lot of it gets missed. So, you know, the amount of pet times women have said, "I've been diagnosed with appendicitis." But when they went in, it wasn't that. It was endometriosis. Or, "I've been told for years I've got IBS." And so, we know that there is, I think, an overseas study has, that they've seen at least 5 doctors and they've been misdiagnosed at least once…

Andrew: Hmm, yes. 

Donna: And the delay is between 7 and 12 years in diagnostics. And there's some women that could be 20 or 30 years. 

Andrew: Yeah, well, that's right. This is the thing. So let's talk about the cost of that. It's not just financial. We're talking about a societal cost. 

Donna: Yeah, so… 

Andrew: You know, cost in pain management, cost in lost hours, lost productivity, social issues, relationship issues, my God. 

Donna: Mental health issues. 

Andrew: Mental health issues. 

Donna: We have girls that commit suicide every year because of it. 

Andrew: It beggars belief why this has not been raised. Forget the emotional aspect. And, you know what? Forget even the female aspect. If this was a political aspect, if this was an economic aspect, it would be looked at now. 

Donna: And there's also the male or, you know, the female. The gender aspect is really quite huge. There's a great advocate in the U.S., Nancy Petersen, and she likes to say that if men had painful sex the entire U.S. defense budget would be spent in finding a cure. 

Andrew: Yeah. That's right. That's right. 

Donna: And it's true. But women are just expected to put up with it. And we get told to go and have a hysterectomy routinely. Because they haven't grasped the concept that endometriosis is outside the uterus not the uterus. And women often aren't empowered enough to say, "No, that's not what I want." So they just go along with it, and then they're still in pain and then because they've had a hysterectomy no one believes that they're still in pain. 

So it's just this never-ending cycle at the moment. And I often had to remind myself at the beginning of starting Endometriosis Australia, and we are only just over five years old. But I have to keep reminding myself that the issue is like Mount Everest, you know? That's the size of it. It is huge. But moving one pebble a time still moves mountains. And so, that's my reminder to myself, we can do these little inroads. And we've made amazing steps in the last 12 months to change the landscape for women going forward with endometriosis. 

We have done that with all the groups coming together, with politicians from all walks of life and from both sides of politics coming together and supporting it. And having that happen, we've also influenced internationally, and that goes back to your previous question about international influence. 

Andrew: Oh really?

Donna: So, we are leading the way in many aspects, that it's then empowering because other governments are watching.

Andrew: Yep. 

Donna: And they're watching what we're doing. And so, kudos to Australian politics. They don't often get much applause for what they're doing, but thank you. All I can say is to everyone in Australian politics that helped make this happen, thank you for changing the landscape for women with endometriosis. 

Andrew: Let's talk a little bit though about endometriosis aetiology and the pathophysiology because we need to get the terminology and the vernacular right. Correct? 

Donna: Yep. 

Andrew: Yep. Let's dive into this. 

Donna: Okay. 

Andrew: What is endometriosis and what do we think causes it? 

Donna: Endometriosis is where cells similar to the lining of the uterus are found elsewhere in the body. So they can be found anywhere from the skin, the joints, around the pelvic region. So, bladder, bowels, ovaries, and also as far away as the lungs and the brain. So, I think there hasn't been any one place in the body where that hasn't been found. So, it's quite an insidious disease. 

What causes it? No, idea. There's lots of theories and I don't like to go into theories, because all of them have got holes in them like Swiss cheese. 

Andrew: Right. 

Donna: What we do know, and this is the bit that I do like. What we do know is there's a genetic element to the disease. So if you have a parent or a sister or a relative, your seven to eight times more likely to have it. I know for myself personally that mine came down through my father's side of the family. 

Andrew: Right. 

Donna: So, I've got cousins with it. So, it's not necessarily was my mother, but it's comes down through my father's side of the family. I only really like to go into facts. If we go into theories, then we, it just becomes muddy water and it isn't what we know. 

How are we going to find it out? More research money needs to find the causation and the prevention and management of the disease. At the moment, what we do is we cut the disease out, we're don’t to burn it off. And so, we excise the disease. And I kind of liked to look at that in a homeopathic sense, and say we're removing the obstacle to cure. So by removing the disease, then we can let our body do naturally, can go in, that complimentary medicine can go in and support the body. Any other questions? 

Andrew: Lots. So when you say genetic component, we're talking about an embryological tissue that's gone awry? Is that right, or?

Donna: Well, no. I think it's just genetics of what you passed down through... So we know that they're doing a genomic study. So Professor Grant Montgomery is leading that in genetics. 

And so, he has said that it's not one gene. They know that. That it's not one gene that is expressing endometriosis, it's a cluster of genes. And it doesn't seem to be the same cluster of genes for every person. 

Andrew: Right. 

Donna: So it's very complex, like, everything with this disease. It's not simple. It's quite complex and far-reaching. 

Andrew: Yeo. 

Donna: We have a lot of women that, you know, it's the family curse. Which is for years, their mom has said, "Don't worry about it. The period pain's normal in our family because it's the family curse." 

Andrew: Right, right. 

Donna: And so, we have a lot of women generalising it and normalising it. And so, they don't seek treatment. Every woman in their family has that. And so that's where we know there was, I think there was some twin studies done as well. 

Andrew: Yep. 

Donna: But it's the genetics. And do we have...is there other influences? There are definitely other influences. You know, some women it turns on. Why is there some that identical twins have it and some don't. And so there has to be other outside influences, whether it be environment, whether it be immune, whether... and it's not autoimmune, just getting that in their first. There's all these other influences in our lives, you know, could that be an influence into the, you know, into having endometriosis? 

We just need more money for research to figure that out. And we've got some brilliant researchers in Australia. So, I'd love to see them crack the code which would be awesome. 

Andrew: And what about characteristics of the lesions that are found in endometriosis versus the severity of the disease? Is there any concordance? 

Donna: Look, there's so many anomalies with this disease. So you can have stage one disease, and be completely bedridden. Or you could be stage 4 disease like me and function quite well. 

So I like to explain it that, you know, if you've got endometriosis and you've only got stage one disease, it could be like, you know, one grain of sand in your eye. 

Andrew: Yeah. 

Donna: It really freaking hurts. 

Andrew: Yeah. 

Donna: So it would really be, you know, each person should be treated on their symptoms and that's, whether it be a medico, or whether it be complementary medicine, there is no set guide. I often hear this whole estrogen dominance theory, and for some women, they do, some women, they don't. 

Andrew: We’ve got to get rid of that as a, you know, a paintbrush thing. Yeah.

Donna: Yeah, it's an oestrogen-driven disease, yes. But it's, you know, some women aren't oestrogen dominant. And so we shouldn't just put everyone in a basket, just treat them for their symptoms that they present, and what's happening to them as a person. 

Andrew: Yeah. I think the problem comes with these, you know, broad paint brush... 

Donna: Yeah, broad brush. 

Andrew: Yeah, terminologies. And it just doesn't fit. And it doesn't fit on so many, in so many conditions. So, we really shouldn't use this vernacular. And this is where we get into this vernacular issue like...

Donna: And I'm very pedantic, which is the same as everyone going on about the...

Andrew: Yes. But rightly so.

Donna: ...the same as the lining of the uterus. Well, it isn't the lining of the uterus, it's similar to. It acts differently. We do need to make sure that we get our words correct. But we also need to just listen to the patient and treat their symptoms. And I think that's something we need to focus on and not get too, as a natural practitioner, not get too dissuaded into fitting into a mould. Because women with endometriosis don't fit in a mould. 

Some has co-morbid autoimmune disease, some have co-morbid polycystic ovarian disease, and some of them just have endometriosis, some have adenomyosis. We just have to take them as an individual. 

Andrew: That's right. So you mentioned autoimmunity before. Some people have autoimmune disease as a co-morbid condition. That doesn't mean that all do. So that doesn't include endometriosis as an autoimmune disease. 

Donna: No. It doesn't fit the criteria. It doesn't fit the criteria as an autoimmune disease. But can the immune system have a role with endometriosis? Absolutely. But it's not autoimmune. 

Andrew: Yes. 

Donna: So there is a difference and that's where I get quite particular on those type of things. But we need to... 

Andrew: Would the term be more inflammatory? 

Donna: Well, endometriosis is an inflammatory disease. But they also have, you know, immune issues. Some have, you know, have quite strong immunities, some don't. 

Andrew: Right. 

Donna: So we just need to listen and treat accordingly to that person that's sitting right in front of you. 

Andrew: Yeah. And one of the other terms that, and let's, I want to be open about this. Lesion's not tumors. Correct? 

Donna: Correct. Lesions. 

Andrew: What else do we have to be particular about in using the correct words, particularly when we're talking, when we're corresponding with medicos? And we wanna make sure that the correct information gets transferred across the different professions. So it's not autoimmune, even though there is inflammatory things, it’s not autoimmune in nature. Yeah? 

Donna: No. It's not autoimmune in nature. And definitely inflammation plays a huge role in it. It is an inflammatory disorder. 

As far as when you're communicating with Medicos, I think, you know, I talk to them on a different level because I'm not practicing currently. So I talk to them in a whole different context. So I often just listen, and ask them questions and then soak it up like a sponge. 

But with a patient, we often have to correct them on anatomy, and it's is usually the basic anatomy is when I'm dealing with patients and understanding what is happening in their body. And, you know, if you've got a rupturing ovarian cyst, what's happening within the body? Explaining that sort of side to them. Understanding the difference between ovarian cysts. There's so many different ovarian cysts, don't just automatically think that one, it's a one-stop shop and they're all the same. 

Andrew: Right. 

Donna: So understanding… because you've got endometriomas, which are on the ovaries or around the ovaries as well. So we also have simple cysts, you know, follicular cysts, that type of thing or hemorrhagic. 

So it's all understanding that they're all different ones, and patients don't understand that either. So I think also as a complementary medicine practitioner is helping guide them through education and what is normal, what's not normal. And I don't think many of them know about even ovulation and how the hormones work within an ovulatory cycle, you know, a menstrual cycle. 

So just keeping it simple and educating them along the way, I think, gives them a bit more power and empowers them to make those better decisions for their health as well when they are talking to Medicos. I think as a natural health practitioner, keeping a good communication or dialogue with specialists is a really good thing, and your GP. I think everyone is finding now that they can hook up with good GPs in their area and good open specialists in their area. I know a lot of the endometriosis specialists are doing multidisciplinary clinics. And Dr. Mike Armour is doing some amazing research in the area of complimentary medicine and endometriosis. 

So, that’s… once we have those evidence-based research articles coming through, then it's going to give more credence of what we're doing is natural practitioners as well. And having that, I think having that dialogue open with the medicos and pelvic pain physiotherapists. Get to know your local pelvic pain physiotherapist and learn the difference between up training and down training of the pelvic floor. So up training is the kegels and learning for incontinence and those kinds of things.

Andrew: Incontinence, yeah. Yup. 

Donna: And down training is women with endometriosis have a hyper, I think they call it hypertonic pelvic floor. So it's always in spasm. So we're trying to teach them to relax it down. So that's one of those things that if you can get in and have that nice team around your patient and encourage them to have that acupuncturist, have the herbalist or a nutritionist or, naturopath and pelvic physio, all those kinds of things. We have them all together. And your local GP that's supportive and understanding. And most women with endometriosis find it really hard to find a GP that understands, has accurate information and supports them. And they're not just put on any depressants. 

Andrew: Is there any way that either/or natural health practitioner, or even a lay person can look for appropriate training in endometriosis? 

Donna: No, not really. 

Andrew: No. So what about the surgeons with a... 

Donna: Not one qualification, no one qualification that says you're an endometriosis excision specialist. But we like to, you know, there's the Australasian Gynecological Endoscopy society, which is ages.com.au, they often have a good list of current members. They aren't all endometriosis excision specialists, but they're surgeons that have had more training. 

But we do encourage people to join the Endometriosis Australia closed discussion group and that's for the patients in Australia to join, and they can get recommendations from each other for endometriosis excision specialists nearest them. And there's a difference between a general gynecological surgeon and and endometriosis excision specialist. It's a minefield for patients to walk through and, but I think if every, you know, if we can all work together, that would be, you know, that's the Holy Grail, isn't it? 

Andrew: Yeah. We were mentioning research before, where is the research taking us now? What are the hot topics of, that, you know, is purported, we don't know, obviously, we haven't got that in… But what are the hot topics to potentially finding a cause or maybe leading to interesting areas? 

Donna: So there's a few areas that they're looking at. One is an early diagnostics. So one would be like a blood test or a urine test, or that type of... 

Andrew: Of course. 

Donna: And a lot of places spout it off about, you know, they're going to be releasing something within, at the end of the year. And I'm not sure that, you know, the information I've had, it's about 10 years away. So, that would, you know, and I don't know whether that's just a guideline, but they are a long way off and finding that little micro RNA that, you know, so that just says that this is, you’ve more than likely got endometriosis…

Andrew: Yeah. It's hard. 

Donna: It will be brilliant to be able to have a blood test to be able to sort that out. 

So we have that in the works. There's also, you know, understanding, I don't know whether anyone in Australia is back to understanding the causation, whether there's more research. I know that there's been some research into the stem cells in the peritoneal fluid. There's been research, I think, there's some CRISPR research, which is way above my pay grade. I don't understand any of that. It's a bit too... 

Andrew: Gene editing. 

Donna: It's… yes. So there's a whole heap of stuff on that. And then, you've got your genomics that's on-going. And then we've got other practical things. So there's the economics, there's the herbal medicine. 

Also just understanding, you know, patients, what they want. So there's been a lot of surveys of understanding. So, it's wide. You know, it's, well, far reaching the areas that they're researching at the moment. They're just, you know, they're all doing it on a smell of an oily rag. 

And I think it's also women trying to fall pregnant. Now, we know that fertility, not every woman with endometriosis is infertile. So we know that 50% of women have a fertility issue, but not all of them will go on and not be able to have a child. Some will need some help. But we also know that they think their bodies are failing, you know? And that, you know, that sometimes there isn't... I tried to have a second child. I could never have a second child. I did IVF, everything that I could think of. I now look back and go, "Well, for me, maybe I was not meant to have a second child because Endometriosis Australia became my second child. And I wouldn't have had time to have Endometriosis Australia if I had have had a second child. 

So, I think we have these goals and ideals in place as women with endometriosis of what we think our life should be. And sometimes we're thrown a curve ball of endometriosis, and we have to reassess and think and come up with a new goal. 

So we've got some endo champions that have made, you know, they were Mum Entrepreneur of the Year. They won the gold gong. But she did it from her hospital bed because she has thoracic endometriosis and she couldn't get up. But she had all of her goodies from her business in the Academy Awards gift bags. 

Andrew: Right. 

Donna: So she kicked amazing goals. She just re-assessed what she could do and what she couldn't do. And I think we are allowed to have that moment in time of mourning the loss of what our potential, we thought it was going to be. But we can reset our goals and look in a different direction and try and find something that we can achieve and what we can do with the curve ball. So we like to say making lemonade out of lemons. 

The stats are really quite staggering on women presenting with pain and not being acknowledged. I mean, the amount of times we're told those hysterical uteruses, you know, they're the ones that are, you know, the smelling salts, all those things over the years, but yet, we can go through so much. So I think that the gender bias is also quite present and we need to acknowledge that if a woman is saying she's in pain, then we need to go through and find out how we can help. And then we need to look also with endometriosis. Is it nerve-orientated pain, is it muscular-orientated pain? Is it lesion-orientated pain? So, there can be a whole heap of different reasons why the pain is there. And then if we can try and work out, to solve the puzzle, I think we need to be problem solvers, and come up with what is the best fit for that person. 

Andrew: Yeah. Hear, hear. You know, it's a big issue looking at pain because you can't see it necessarily. You can try and measure acute pain, raised pulse, sweating, guarding all of that sort of thing. But how do you measure chronic pain? We know that there's issues and yet there's still this male, I'm going to say white male, male judgment of female pain. 

Donna: I like to go back to...and it may come across as blunt, but, you know, I'm very much known for calling a spade a shovel. It's not visual. So that's one of the problems with endometriosis.

Andrew: Yeah. 

Donna: So if a guy walked into a doctor's surgery and he said, "You know, I'm worried about prostate cancer," or, you know, "I'm worried about something." And the doctor will say, "Well, you know what? We'll remove your penis and your testicles and that might, but probably won't, solve the problem." 

Women walk in and they'll say, "I've got endometriosis." And the doctor says, "Well, we're gonna remove your ovaries and your uterus." And we go, "Okay." We as women need to be empowered to say that's not always the right answer. We often feel like we want to rip it out because it hurts so much. But, you know, the poor uterus is being blamed to something that it's not its fault. It could be quite perfectly healthy. So why would we remove it? 

Andrew: Right. 

Donna: So would it have more value if we could visually see a uterus and the ovaries on the outside, you know? We have empathy for women that have a double mastectomy because it's visual. 

Andrew: Yeah, yeah. 

Donna: If the ovaries and the uterus were on the outside, would we have more empathy? 

Andrew: So, what about natural therapies? What is the role and where does the evidence lie to help women in pain with endo? 

Donna: Look, I think we do lack evidence, but as Professor Jason Abbot says in one of our medical webinars on our website, "If it works, keep doing it." And so, I think we've got to do that for now until we can get more money. And just like endometriosis doesn't have enough research funding, so too does complementary medicine. It doesn't have enough research funding. 

Andrew: Oh, that's right. 

Donna: So, if we have stuff that we know that the microbiome… naturopaths have been working on microbiome for the last, you know, 30, 40 years or more, but we now can measure it with research, and now it's getting more credence. 

Andrew: Yeah. 

Donna: So I think it's just going to be like that. We've got to find what works for our patient and what doesn't. You know, reducing inflammation, finding a diet that works, I mean, every woman I know in our closed discussion group wants to have… they think they can do it themselves and find the right diet, and they can just do it, or take herbs off the shelf and just do it and that's going to be fine. And we try and encourage them to say, "You know what? You've got a complex disease. You really need to get professional care." And I think that's the best role that our naturopaths and our nutritionists, and our homeopaths and herbalists, can all play in getting the best information to our clients by listening to what they're going through and coming up with an individual plan that suits them. 

We've got some good research in with microbiome that helps… because women talk about this endo bloat, and it, you know, yes they do get inflammation and bloating, but how can we work as natural practitioners to ease those symptoms? And this bloating seems to be one of the biggest problems that women complain about, you know? That have endometriosis. So, we know that natural therapies would work brilliantly for that sort of stuff. 

So it's a really good thing that we're getting some evidence base to back it up, but also we know we can listen to our patients and they can tell you what's working or what's not. I've used homeopathy really quite well for helping with my nerve pain and hot flushes. So there's going to be different things that work for different people. And trying to encourage people that just because you've seen one naturopath doesn't mean that it doesn't work. If it didn't work for you, go and find another naturopath. You've got to find one that fits you, and that's, you know, that you click with. And it's no different to doctors. They've got to find the right doctor they click with. 

Andrew: Or accountants, or mechanics, or... 

Donna: Or accountants. Exactly. So we've got to be...we as patients need to be open to trying different things and having different people involved in our treatment and our care. I like to say that endometriosis is a multi-faceted disease that needs a multidisciplinary approach. 

Andrew: Well done. 

Donna: So I think that we can all play a role in it. Probably the best idea is not doing it all at once, but figuring out which bits are working and which bit's not, so introducing one thing at a time. And trying to figure out, as a practitioner, how can we fit into that person's lifestyle. Giving them a 100 different things to do, probably won't fit in with their lifestyle and they'll give up. Because they're exhausted anyway. 

Andrew: Yeah. 

Donna: They've all got fatigue and they're all exhausted then they're in pain, and their concentration is fairly limited as well. So we find pain distracting. And we can do, you know, there's art therapy. There's all these different things that we know can help with pain and while you're in the middle of pain. So I think that complementary medicine and allied therapy is so, so important. 

Andrew: Yeah. 

Donna: Happy Village. We can't do it without our village around us. 

Andrew: You know, one of the points I think with regards to pain management, I get that there is going to be some patients, women, in severe pain, such severe pain they are going to require opiod treatment. But we already know in Australia, and indeed, around the world, that we have a massive opioid dependency issue. It's causing huge untold damage in, economically and socially. This is a real issue. 

The ongoing issue, if you like, with opioid therapy, is that the higher you go, the more adverse events you're gonna get and you can get rebound pain from that. This is such an issue, we need options. Now, there are the anti-inflammatories. Well, all anti-inflammatories have a cardiovascular risk depending on how strong they are. So there is an adverse event you've got to now provide for. You can talk Paracetamol. We thought the ‘safest drug on earth,’ maybe not so. So we really need options for these women, don't we? 

Donna: Absolutely. And then you've also got, if they're trying to conceive, you can't be on any of that and you can't be on the hormone. And we know that the hormones that, I think one stat I saw was up to 50% of the population can't tolerate hormones. And I know that they tried the male pill and the mild symptoms the men couldn't handle, so the whole thing was canned. Where women are just told to put up with those eg: mild symptoms. And some of them aren't mild, you know. Some of the women that get really bad depression and anxiety and stuff from hormonal preparations, and it's not, you know, it's not a cure for endometriosis. And some find it useful, some don't. And I think we need to take that into account. 

So, yes. There isn't anything. The biggest problem with removing the opioids was that there's not enough pain specialists.

Andrew: Yeah. 

Donna: And the wait list is huge to get into too. And that's really discovering where the origin of your pain is, you know, helping you find out whether it's nerve… I know a lot of girls with very complex disease are doing neuro-stimulators.

Andrew: Right. 

Donna: A lot of them are doing some hard core drugs, to, you know, they're going to have infusions in the hospital and all that kind of stuff, and they're hardcore. And that's just to function every day. 

Andrew: Wow. 

Donna: So it's an issue. I think we were thrown pills at us, as a patient, we were thrown them at us, and now we're told, "No," but we're going to take it away." So there wasn't enough education on what's going to be the alternative? What can we do? How can we support women? And which is a good timing with the acupuncture research coming out and we've got some other research that needs to get done in that area of helping manage pain. 

And often in acute flares like, so I remember that I didn't have acute flares until like, mine was very much cycle-orientated and it was just around my period. So once a month I would have an acute flare that I would need medication. Some women have it every day. Some women might only get it at ovulation. Some may get it at menstruation. So, I think if we're talking about painkillers used as acute management, that's a whole different thing as instead of it being a chronic pain management. 

Andrew: Yes. 

Donna: So, I think there was no differentiation between the two, and whilst, then none of them are nice to be on long term, we've got to come up with alternatives. I think that's something that there isn't out there, at least not a lot of choice out there for how are we going to do it. And that's chronic pain, could be back pain, could be sinus pain, could be headaches, there's just not a huge choice out there for any chronic pain sufferer for a long term, effective and a low side effect. 

Andrew: Yeah. 

Donna: So I think we can do, as natural practitioners, we can do a lot to support those people. I live at my osteopath's, just by the way. 

Andrew: Well, yeah. So as you said, multidisciplinary. 

Donna: Multidisciplinary. And, you know, after every surgery I would go and have massages. Once my body was, you know, because my last surgery I had liver resection.

Andrew: Oh, God. Donna.

Donna: I had uterus and cervix and tubes. My uterus was removed because I had adenomyosis and severe fibroids. So there was nothing useful left in it. So, I'm not anti-hysterectomy, I'm just anti-removal of healthy organs. 

Andrew: Yes. 

Donna: And thinking that's going to cure the problem. So once I was ready enough, I went to a normal physio, I went to massage therapy, because I needed to reeducate my body to not go into those same patterns of pain. 

So at the slightest stimuli, the body will go back into cramping and spasms. Where, if you go and have those messages and those physio therapy treatments, then you can start to reeducate your body. So women shouldn't just think that a surgery is going to be a one-stop shop and it's all going to fix it. We need to reeducate it, and that's where all the different modalities can play a role. 

Andrew: We're now learning about the strength of pre-op anxiety as a component of post-op pain. i.e. if you're more anxious prior to surgery, you're going to feel more pain afterwards. And they're now looking at things like... I was reading a paper the other day, Melatonin plus GABA or and/or GABA, I think, just prior to surgery, and they had vastly reduced pain medication rates post-surgery. I think this was lower back surgery. Do you think stress and the stressors that women have to cope with, i.e, nowadays, they're not just the mother, teacher, cook, cleaner, they're also the breadwinner. They're having to take on so much more, so their stress component is that much more of a factor in their own everyday life. Do you think that's a big issue or part of the puzzle? 

Donna: I think it's part of the puzzle and I do think it is a big issue. I broke my leg a couple of years ago and I had to lay in bed for a couple months and it was the best thing. I didn't have to figure out what I was going to buy for groceries. I didn't have to figure out what I was cooking for dinner, laundry, school pickups, after school activities. It gave my brain a chance to have a break. And I think we don't know what downtime is anymore. 

Andrew: Yeah. 

Donna: I don't think we...we're always on. We're always stimulated with electronics and all that kind of stuff. So it's very hard to...I think that's where meditation and all that kind of stuff, and yoga, and while we've got some really good research in yoga and why it works so well is because we can start relaxing the brain. 

I know for myself, I used to get really panicked going in for surgery and especially when, you know, you're having a liver resection or you're going into ICU after it. I was a wee bit freaked out. And Rescue Remedy only did so far for me. I have panic attacks coming out of anesthetic and, of course, I'm allergic to general anesthetics. So I would talk to my nurses before I went in, and they would hold my hand as I was coming out because that was my grounding. I needed to be grounded. I could think about that, but not a lot of people have that. If you're going in for a first surgery... 

Andrew: Wherewithal, yeah. 

Donna: Yeah. They don't have that experience to understand, you know, when you've been a frequent flyer, you can say, "Well, that's probably...I'm coming up with what my ritual is and what works for me." 

But when you're going in for your first surgery, it's very hard to have a plan and an effective plan. And I think we can empower women a little bit more on that pre-surgery stage and how, maybe just a little bit more explanation on the surgeon's behalf, but also as a natural health practitioner, what can we do to help them keep calm and centered for what is going to be quite a traumatic experience, and what can we do to support them through that? 

Whether it be through herbs, whether it, you know, we've got contraindications that we’ve got to think about for any medicines or anesthetics that they're going to do. But homeopathics works nicely in that aspect as well. Can we go and do massages beforehand to help get our body prepared? Can we go and do some acupuncture? You know, is there a role for acupuncture pre-surgery? 

Andrew: Just at the last thing, what would be your call out to natural health practitioners to up-skill and to be safe? What do we need to maybe use? Are there any hero herbs? Not evidenced-based, but maybe from experiential, but also things that we need to let go? 

Donna: We need to let go of the past vernacular around what endometriosis is. Find out the facts. We've got all the facts on our website. Getting pregnant... 

Andrew: Endometriosis... 

Donna: endometriosisaustralia.org. We have the 10 facts there, you know, teenagers aren't too young, hysterectomy isn't a cure, there is no prevention. We know that we can... Get those facts right. We've got great webinars that are all free, and we don't charge for any educational information on our website. So hop on, find out, brush up on all those terminologies, and what's available and what's not for women with endometriosis. 

And I think we need to really listen to the individual and come up with an individual plan. There's some big diets out there, whether it be FODMAPs, whether it be GAPS, whether it be, you know, all these named ones, I think we've got to find what works for the lifestyle of the patient and what… so what are they going to actually stick with? So try not to be too radical of changing. Don't made them a vegan if there's no way that they're ever going to be able to stick with that, you know. 

Give them little tips and just gradually get them to change. And maybe understanding, I think as practitioners, where we can educate them that it's not going to be fixed in a week. They've had it for the last 20 years. So being realistic about how quickly changes are going to happen and we need to educate them that it's not, you know, in two weeks time you're not going to feel 100%, and you're not going to be out there running a marathon. That's just not gonna happen. But we can gradually help be part of your team and gradually help you get better. And let's pick one little symptom. What's your worst one? Is it fatigue? What's the one that we can work on the most to help get you where you need get to, you know? 

Because fatigue is such a big thing and it wasn't talked about. And fatigue is such a big thing for women with endometriosis because we're still trying to keep up. Understanding that there's only four stages of endometriosis, no matter how creative others get, there is only four stages of endometriosis. And just because you've got stage four, it doesn't make it any worse than someone with stage one. They could still have really bad pain. The pain is not an indicator of the severity of the disease. 

And we've got things like DIE ultrasounds, which is Deep Infiltrating Endometriosis ultrasounds, that are available by select few. There's not many. It's all about the skills of the technician. Whether it be your GP, your naturopath, your surgeon, your sonographer. It's all about the skills of the technician as opposed to the actual modality. But finding a DIE ultrasound place in Sydney, we've got some great ones. And Melbourne has got some great ones too. So what you can do is that will pick up severe stage three and four disease and it'll help map for the surgeons, but it also gives the patient an understanding of where and what they're doing. 

Andrew: Yeah. 

Donna: Bowel symptoms, bladder symptoms, you know, what can we do to reduce the inflammation in the bladder? You know, to make it easier for them to go to the bathroom. Bowels, the same thing. How can we reduce the inflammation in the bowel? How can we change their diet that allows it. Because if they have a bowel re-section, they're going to be on no fibre or low fibre diet. So how can we make that the most wholesome to someone who's had a bowel re-section? Because it's, instead of just white.

Andrew: Yeah. 

Donna: Because it's not nice for anyone to have, ever. 

Andrew: Not ever. 

Donna: But that's what they get given. So, how can we support and come up with a better way of dealing with people that have gone through bowel resections so that they...and they tend to have long going, we call it the legacy of the disease. So they may not have any active disease, but they might have a legacy of the disease that they've got to live with. And how can we manage those symptoms and give them a better quality of life? I think endometriosis is a quality-of-life disease and natural practitioners can do so much to increase their quality of life.

Andrew: Donna Ciccia, I have to say, your burden is the savior of the next generation of girls, not just in Australia, but around the world. I can't thank you enough for your absolute dedication, and not just for you. It's for others. I just can't thank you enough for bringing endometriosis to the forefront of the minds of the Australian public and, God forbid, the politicians. In not just Australia, and from thence, from then on, around the world. Thank you so much for your dedication and passion that's driving looking into endometriosis an d caring for women with endometriosis, with, you know, lesser judgment and greater, as I said, care. Well done. 

Donna: Thank you for having me. 

Andrew: This is FX Medicine. I'm Andrew Whitfield-Cook.

Additional Resources

Donna Ciccia
Endometriosis Australia
Dr Mike Armour
Prof. Jason Abbott
Endometriosis Australia: Stats and research resources
Endometriosis Australia: Pain Tracker

Research explored in this episode:

Scientists identify unusual mutations in endometriosis using gene sequencing tools, News Medical Life Sciences. 2017 May 11

 Javaherforooshzadeh F, Amirpour I, Janatmakan F, et al. Comparison of Effects of Melatonin and Gabapentin on Post Operative Anxiety and Pain in Lumbar Spine Surgery: A Randomized Clinical Trial. Anesth Pain Med. 2018 June; 8(3):e68763.​

Danilov A, Kurganova J. Melatonin in Chronic Pain Syndromes. Pain Ther. 2016 Jun;5(1):1-17.​


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