In this podcast we speak with Natarsha Terreiro, an endometriosis patient, endo warrior and New South Wales coordinator of Endometriosis Australia, about her personal experience with endometriosis. Natarsha shares her symptoms, the process to diagnosis and how she manages her flare up. Importantly, Natarsha shares her experience with the mental and emotional load of living with a chronic disease and how others can provide support to patients with endometriosis.
This is part of a podcast series on endometriosis where we hear from the patient, the researcher and the specialist on the impact of endometriosis.
Covered in this episode
[00:39] Welcoming Natarsha Terreiro
[02:23] Natarsha’s experience
[04:31] Creating a collaborative multidisciplinary team of practitioners
[07:21] Natarsha’s experience with surgery
[10:03] Strategies for dealing with flare-ups
[11:58] How COVID has positively affected Natarsha’s work
[13:38] How friends and family can support a loved one with endometriosis
[15:40] Endometriosis an invisible illness
[17:19] Dealing with the various forms of pain associated with endometriosis
[20:04] Chronic Disease Management plan
[22:06] Endometriosis’s effects on work
[24:23] Treatment that has worked for Natarsha
[28:10] Gut health, diet and endometriosis
[29:10] Priority areas for the diagnosis and management of endometriosis
[32:42] Thanking Natarsha and closing remarks
- Endometriosis affects one in nine women and may present differently for these women. Individualisation in understanding and treatment is key to supporting these patients.
- It takes an average of six-and-a-half years for a woman to be diagnosed and endometriosis is often under-recognised and misdiagnosed.
- For a woman with endometriosis, her disease costs her approximately $30,000 per year.
- Endometriosis costs the Australian healthcare system around $9.7 billion annually with the majority of those costs driven by a loss of productivity.
- Endometriosis patients may normalise their symptoms of pain and fatigue, delaying diagnosis.
- Up to 48% of women with chronic pelvic pain saw at least one allied health practitioner as reported in a 2022 paper on chronic pelvic pain.
- A collaborative care model may benefit a patient with endometriosis and may include a general practitioner, naturopath, nutritionist, physiotherapist, osteopath, psychologist, chiropractor among others and should be determined based on the patients’ symptoms.
- Endometriosis Australia website has resources available to support patients with endometriosis in selection suitable complementary therapies.
- It is important for a patient with endometriosis to feel listened to.
- Surgery for the treatment of endometriosis is not a cure and may be required multiple times and may present further complications with scar tissue.
- At present, there is no cure for endometriosis.
- Endometriosis may require an individual to make many changes to their daily life including reduced office working hours and missed social engagements to manage the chronic pain and fatigue associated with endometriosis.
- Strategies for managing flare-ups include:
- The use of hot water bottles/heat pillows
- Gentle exercise (if tolerated)
- TENS machine
- Warm magnesium bath
- Support from loved ones
- As a chronic health condition with pain, endometriosis may present mental and emotional health implications.
- Ways to support a person with endometriosis:
- Ask what you can do to help
- Listen and be present
- Learn about endometriosis
- Ask questions to inform yourself and demonstrate you care
- Endometriosis is not a visible condition, however, with increasing advocacy for the condition, there is greater awareness of it and its impacts.
- There is a strong connection between chronic pain and mood, making it important to manage mood, stress and emotional health.
- Rest can come in many forms and may include:
- Physical rest
- Mental rest
- Social rest
- Sensory rest
- The Australian Government has a Medicare Chronic Disease Management Plan to support patients with endometriosis to receive a rebate of $50 for 5 appointments per year for practitioners listed in your care plan.
- Endometriosis Australia is involved in a research project called ‘Endo at Work’ studying the disadvantage endometriosis patients experience in their careers
- Diet and therapeutic supplementation can support a patient with endometriosis
- Monash University is currently undertaking a study on the role of diet and gut health in endometriosis (see links) and changes to the gut and vaginal microbiome.
- Gut health may be closely associated with endometriosis.
- RANZCOG published the first Australian clinical guidelines for the diagnosis and management of endometriosis with three areas of priority including: awareness and education clinical management and care and research.
Emma: Hi, and welcome to FX Medicine where we bring you the latest in evidence-based integrative functional and complementary medicine. I'm Emma Sutherland, and joining us on the line today is Natarsha Terreiro. This podcast is part of a series we are doing on the topic of endometriosis. And today, we'll be discussing the patient experience.
I'd like to begin though, by acknowledging the traditional owners of the land on which we are recording today. I would also like to pay my respects to elders past and present.
Now, Natarsha is going to be sharing with us her personal experience of endometriosis. She is an endowarrior, and also the New South Wales coordinator for Endometriosis Australia. Welcome to FX Medicine, Natarsha. Thank you so much for being with us today.
Natarsha: Thanks, Emma. Hi, thanks for having me.
Emma: Always my pleasure. Now, this is such a big topic, and endometriosis affects one in nine women. And it takes an average of six-and-a-half years for a woman to be diagnosed. I find it's often unrecognised and misdiagnosed. And incredibly, for a woman with endometriosis, her disease costs her a staggering $30,000 per year. And endometriosis costs the Australian healthcare system around $9.7 billion annually. Now, most of those costs are driven by a loss of productivity and also pain.
And having a specialty in women's health, I've worked with many women with endometriosis. I have seen the impact of the long diagnosis times, the, "Oh, but you look fine,” attitudes of family and friends and the silent suffering and the sky-high pain thresholds of these women.
Now, today as part of our endometriosis series, let's pull back the curtain and really understand the impact that endometriosis has on women. Natarsha, can we begin with you telling us about your journey with endometriosis? When did you first start experiencing symptoms?
Natarsha: Yeah, sure. I mean, it's been a long journey. My symptoms really started when I was a teenager, probably 14 or 15. And then I was 26 when I was diagnosed. I'm now about to turn 30. So around 12 years with symptom before diagnosis. And a lot of that was because I really normalised my symptoms. I thought that extreme period pain was normal, and I thought that I was just one of the unlucky ones who had it.
Emma: Yeah, unfortunately, it's such a common thing that we hear clinically. And what symptoms did you experience? Can you get granular on what your experience symptom-wise...? Obviously, pain is such a big one but what else was there?
Natarsha: Yeah, absolutely. So I always had really bad pain with my period. So I would consistently have to take a day off school, uni, or work on the first day of my period, like clockwork every month. I also had significant fatigue. So at least one week every month, I was really tired, really rundown, really lethargic, and I still am. I’ve also had, and continue to have IBS symptoms, which often go hand in hand for people with endo. Also, other pain as well as the pelvic pain. So lower back pain and hip pain, that kind of thing.
And I think it's really affected me a lot, but not in a way that I necessarily understood or appreciated at the time, particularly when I was younger. Childhood friends remember me as someone who was always in pain, which I didn't really recognise in myself. That wasn't a way that I would have characterised myself. And friends from my early 20s would often comment that I was always sick, but that wasn't something that I really recognised at the time.
Emma: Well, I guess it was so normal for you. And that's what we see, this normalisation of these intense symptoms for the sufferer.
Now, a 2022 paper on chronic pelvic pain reported that 48% of women saw at least one allied health practitioner. Does that sound about right for you? I mean, I know you work with EndoAustralia, you have endometriosis yourself. Does that sound right?
Natarsha: Yeah, it does. It's certainly consistent with my personal experience. So I have two osteopaths, a pain physio, a pelvic physio, a dietitian, and probably missing a few from that list. But it's not an uncommon care team composition for people with chronic pelvic pain because it's not a simple condition, it's not something that's simple to treat, and it presents differently in every patient. So people really need to be guided by their symptoms.
Emma: And how did you go about creating that collaborative team around you? Because that's not easy to find the right people that can then work collaboratively.
Natarsha: Yeah, absolutely. So, I put together a team of professionals, basically with my GP. And that multidisciplinary approach has been critical for me really. I have a pain management specialist, a pain physio, and pain management osteo, a general osteo, a pelvic health physio, a dietician, and a clinical psychologist who specialises in chronic pain. And so, endo and chronic pain is so complex. It really requires that multidisciplinary approach so that you can treat it.
One thing I would say is that not all of those things are necessary for every person or for every patient. That team works for me based on my symptoms, or what I can afford to pay for. But not everyone will have the same needs or the same symptoms or the same capacity to pay, obviously. So people should, like I said before, really be guided by their symptoms and their situation when putting together their own team. But do research, speak to your GP about what's out there. And the Endometriosis Australia website also has a lot of information about what complementary therapies might be helpful. So that you can then put together your own team.
Emma: Yeah, I just think it's invaluable that women feel heard, they feel understood, they feel listened to, and having that collaborative care team can really go a huge step forward in a psychological aspect to helping that person.
Natarsha: Yeah, absolutely. Mine all talk about me behind my back, which is great for me and my care.
Emma: I love that they do communicate, though. That is just so fantastic. I don't think it happens enough.
Natarsha: Yeah, no, it's something that definitely needs to be happening more. And that's really important for people with complex conditions that require that multidisciplinary approach.
Natarsha: Yeah, so I've had one surgery. And that was a number of years ago now. Now I'm in a stage where I'm treating my endometriosis with medication and other complementary therapies so that I, too...The idea being that I shouldn't have to have surgery again soon. I should want to basically lengthen the amount of time between surgeries. Some people with endo will have a surgery...I've heard of people having surgery every two years. It's not uncommon for women with endo to have multiple surgeries over their lifetime, because you can remove the diseased tissue, but it still can and often does grow back.
Emma: Yes, of course. And look, I think that people can mistakenly assume that if you've had surgery, then your endometriosis is cured. So, how would you explain this to somebody?
Natarsha: Yeah, that's a really good question. It's definitely a frustrating question or a frustrating comment to come up against. And it's difficult to explain because, in other people's minds, it makes sense that surgery is a cure, but truthfully, there is no cure for endo. Surgery is a treatment option. It's not a cure.
Emma: I think that sentence that you just said right there, is it in a nutshell. That is exactly what it is and it's changing people's understanding of surgery in endometriosis.
Emma: Now, how does surgical scar tissue impact your daily life?
Natarsha: Well, it can be difficult to attribute any symptoms to scar tissue specifically, and for me, I only had one surgery, so I probably don't have a huge amount of scar tissue. So pain and other symptoms could be from scar tissue or new disease, or even just the central sensitisation of the nervous system that happens in someone who has had long-term pain.
But generally, endo has meant that I've had to make lots of changes to my daily life. For example, I used to work five days a week from an office and also go to events and social gatherings multiple times a week. My life has had to change a lot to accommodate chronic pain and the fatigue that comes with it, such that, I only work one day a week from the office now and from home the rest of the time. And I can only really leave the house for a couple of hours at a time once or twice a week. I've had to make so many changes but for the better, and for the better of my health.
Emma: Yeah. Yeah. The impact is so enormous, isn't it?
Natarsha: Yeah, absolutely.
Natarsha: They can be really difficult, those days, or those periods of time. And the strategies depend on how severe the flare-up is. So I can have flare-ups where I can work through it and acknowledge that I'm in a flare-up, and I just move a bit slower in terms of how much I can do, and how much I can commit to, might have to cancel some social gatherings, etc. But then there can be other flare-ups where I'm completely bedridden, and I can't move and I need someone to come over to bring me food, or something like that.
But basically, the strategies are really lots of rest combined with some gentle exercise. And I know that exercise can sound counterproductive or counterintuitive, but it works. Definitely heat packs, maybe a TENS machine, a warm magnesium bath, if I can manage it, if I'm feeling stable enough to actually run a bath and get into and out of it, and all that kind of thing. And help from loved ones. I might ask someone to come and keep me company or just yammer at me on the phone to distract me. That can also help.
But I think the most important thing during flare-ups is self-compassion. It's so easy to beat yourself up about the plans that you have to cancel, or the work that you're missing, or the housework that you're not able to do. And honestly, the best thing that chronic illness has taught me is how to be kind to myself.
Emma: I tell you what, I think there's so many layers to endometriosis, and this mental and emotional layer is so big. And the art - it is called an art - the art of self-compassion has never been more important than in a case like this.
Natarsha: Yeah, absolutely. The mental health implications for people with endo, but also chronic illness generally, are just so huge.
Emma: Yeah. Now, interesting, you talked about the work side of things because a research paper from February this year showed that due to COVID and the resulting more flexible hours and being able to work from home that women with endometriosis felt they were more productive. Now, has COVID affected your experience, or were you already set up in that way?
Natarsha: Yeah, so I'm really lucky that I work for a large organisation with a really good employee support system. And we had a flexible working and remote working before COVID. What I found for me, though, is that with COVID, and with everybody else working flexibly, that really helped with a better understanding of what I was going through prior to COVID. Because previous to that, I'd be the only person in a meeting working remotely and everyone else would be in the room, they'd be talking over each other or having the usual kind of conversations that you have when everybody's in a room together. And that was quite isolating being on the phone being the only person working remotely. But then during COVID, everybody was working remotely. And it really enhanced my workplace experience as well. So while I had that flexibility, it's become more effective thanks to COVID.
Emma: Yeah, and I love that perspective because I hadn't thought about it from that angle, that you are not the only one sitting on Zoom alone anymore. Everybody is on there with you. So that is fantastic. It creates a much more… it doesn't put you in that silo. It takes you out of it and makes everyone the same in that way.
Natarsha: Yeah, it was a really great normaliser in that way.
Natarsha: Well, it's funny that you ask that. I actually wrote an article for the Endometriosis Australia blog last year called "7 Ways to Support Someone with Endo."
Natarsha: I think some of the key ones, though, are to ask what you can do to help because often we won't think...we're so overcome with all the things that we have to manage and the pain. It can be really overwhelming and we don't necessarily think to ask for help. We're so caught up in what we have to do that we don't think about what other people might be able to do. So if you ask what you can do to help, that's a really good circuit breaker for people to realise that there's help available and they don't have to do everything themselves.
The other things are to just listen. A lot of the time, like I said before, the mental health impacts are so widespread ,that often you just need someone to listen. They don’t have to fix the problem. Just listen about what you're going through. And another one would be to learn about endo, and about what our experience is like. And just ask questions. Because that lets us know that you care and that you want to know more and want to really understand what we're going through.
Emma: Yeah. And I love that, ask how you can help. That is such a big one. It could be something simple like picking up something from the shops for you, or dropping off something, or yeah, chatting to you while you're on the phone. It's just sometimes so simple to do a little thing that can make a big difference.
Emma: Yeah. Yeah. And definitely, I like that, to just listen, not to fix it. Because when we see someone we love in pain, we naturally want to fix things. But this is a situation that you can't fix. And so just to be present is such a gift in itself.
Emma: Now, Natarsha, can you describe how endometriosis is an invisible illness? Because a lot of women come in to see me and they'll say, "Oh, I've been diagnosed with endometriosis but I can't see anything." So how would you explain this to somebody?
Natarsha: Yeah. I think it's getting less and less invisible thanks to advocacy and education over time, but it's still largely invisible. Because like you say, you can't see it. It's not like a broken leg where there's some external indication that you're struggling or there's something wrong. I think the taboo nature of periods also plays a role. There's still this element of secret women's business in play. So I think the easiest way to explain to make the invisible visible is just to explain to them what you're going through just to let them in on your experience.
Emma: I think a lot of people will be shocked. I mean, I'm always shocked at the incredible pain thresholds of women with endometriosis. And when I'm in clinic with a patient, I'm asking very detailed questions. And even if I asked her to rate on a pain scale of 1 to 10, she may still say to me, "No, it's about a 3 out of 10." And on somebody else's pain scale, that's probably a 10 out of 10. So it's still sometimes hard to get that information. But the pain thresholds are such a big white flag for me.
Natarsha: Absolutely. Yeah. It really changes your perception of pain on a day-to-day basis because a lot of the time you're living with it day to day. So your normal pain every day might be a five, but that's just normal for you.
Emma: Yeah. And so actually, I wanted to just ask, at this point, how do you mentally and psychologically deal with that pain? So, are there strategies you've learnt that increase your resilience to that pain? Pain is physical, but it's also mental and emotional.
Natarsha: Yeah, absolutely. So chronic pain has a very strong link with mood. So, pain gets worse as your mood is worse. So I work with a clinical psychologist who specialises in chronic pain to teach me strategies to make sure that my mood is good and I'm dealing with all the things mentally that I need to be dealing with so that I'm not increasing my pain by accident, obviously, I wouldn't do it on purpose, by being stressed or not resolving things with my mood or with people in my life, or whatever it is.
So, look, there's lots of ways to manage it, but some key ones that people can do at home, mindfulness, getting enough rest, making sure that you're incorporating rest that's not only physical rest but mental rest, social rest, sensory rest. Rest isn't just physical. That's how we tend to think of it. But it's so much more than that.
Emma: Yeah, that's a really, really salient point. I love that one. Because rest is...we do just think of it, “Oh, we'll just lay on the couch or rest.” But it's actually switching your mind off from sensory overload from stimulus that can really...what's the word...can really play on the nervous system.
Natarsha: Absolutely. And so you might be physically still and physically resting, but you could still be engaging in a discussion with somebody online or over the phone that's still stimulating you mentally. While you might be physically resting, you're not mentally resting. So I think making sure that you're getting a combination of different types of rest is really important. And mindfulness and meditation is a really good way to do that.
Emma: Yeah. And I think it's one of those points where we tend to be busy, busy, busy, modern-day life, but allowing yourself to not be busy and to rest on all those levels could be quite challenging for a lot of people.
Natarsha: It's definitely a skill that you have to practice. It doesn't come naturally to most people, particularly these days with wanting to be...Everyone's got a side hustle, and you have to do everything all the time and be everything to everybody. But yeah, it's something that is a really valuable skill to learn.
Emma: Yeah, and that analogy of the bucket, if you're topping up your rest bucket, then your pain becomes more bearable.
Emma: Now, the government has in place a Medicare item called a chronic disease management plan. And this means that patients can receive rebates of $50 for up to 5 appointments with practitioners such as dieticians or pelvic floor physios. So as a chronic disease, I mean, endometriosis has untold financial burden on women, as we spoke of at the beginning. What is your experience here? Has this been of help to you?
Natarsha: Yeah, so I do have that chronic disease management plan, which my GP and I review every year. It ends up being about $250 a year that you get back from Medicare for those appointments from those specific practitioners who are named in your plan that you can then review every year with your GP. I'm really lucky to have an above-average income and to be able to afford to, in some ways, spare no expense on my treatment. But I basically burnt through all of my savings to do that. I really had to tighten my belt in other areas to make that work. And it really is, like you said earlier, a struggle for people. It is the number of appointments, medications, days off work, that lost productivity, it's the whole picture of financial stress and economic burden that chronic disease generally and endo specifically puts on people, it's really significant. It's huge.
Emma: Yeah. And for all the clinicians out there listening, please make sure that you tell your patients about this chronic disease management plan because anything that we can do to help ease that financial burden is going to be absolutely essential.
Natarsha: Yeah, I think there is some education that needs to be done around the availability of that because a lot of people wouldn't know, and GPs should be actively telling their patients about it.
Emma: Yes, yes, exactly. But yeah, we can all do our part in this education. So let's all talk about that one with our patients.
Now, there is a research project underway called Endo at Work, and it's been conducted by Endometriosis Australia in partnership with several universities. And in another episode in this series, I will be interviewing lead researcher, Professor John Wardle about this really exciting project. But early data is showing that one in three women have been passed over for promotion due to their endometriosis. How has your experience been, or what are the stories that you hear from other women in this area?
Natarsha: I mean, upfront, I have to acknowledge my privilege that I work for a really large organisation that has been really, really good to me in this way. So I actually have fibromyalgia, which is widespread chronic pain in addition to endo. So, as I mentioned before, I've been able to access flexible working arrangements, flexible hours so that I can work remotely, which makes it so much easier to manage my pain. And so working from home is a godsend for me. But I'm also lucky that my job is a desk job. I'm not on my feet very much. So I can just sit there with a heat pack and sometimes work through the pain if I need to.
But I'm not a teacher, or a nurse, or in a job where I have to be on my feet all the time. And truthfully, a lot of people with endo or chronic pain have to quit their jobs, or they're let go from their jobs simply because they can't do them anymore. They can't do them with the level of pain that they're experiencing or the other symptoms that they're experiencing. And some of the stories that I've heard are heartbreaking. It is really, really difficult for people.
Emma: And I think what you're highlighting here is that the nature of somebody's occupation will have a profound effect on how this impacts them because, as you said, if you have a physical job, that's going to be really even more challenging and difficult, and sometimes impossible. And the fact that women have to lose their jobs or say, "No, I can't keep going," it breaks my heart. It's awful.
Natarsha: Yeah, completely. And for some people, that might mean that while dealing with a diagnosis and the symptoms and putting together a care team, they also may have to, if they need to, change careers. That's such a huge addition to what they're already going through.
Natarsha: Yeah, so there have been some medications that haven't worked. But with medication, it's so often trial and error. And one person will react completely differently to the same medication than somebody else. I think the really impactful treatments, for me, have been that multidisciplinary care team, and the lifestyle changes that I've made to live better and to live differently to accommodate my illness. And then also the support from family and friends. It's not a treatment in a traditional sense, but it's a treatment in the sense that it has a huge impact on how I can manage day-to-day.
Emma: Yeah, absolutely. It could literally make or break your day from that side of things. And did you make any dietary changes? Did you delve into natural medicine for your endometriosis? Tell me about that.
Natarsha: Yeah, I have. So I've worked with a dietician and a naturopath to make dietary changes to make sure that I'm getting the vitamins and minerals that I need from my food, but also from supplements. And that's been really important. And it's not just about… people often think about diet as diets and short-term fixes, but it's really been about a long-term permanent change in how I think about food as nutrition, and as a being fulfilling for my body and for my needs, and so that I can achieve my goals rather than tick a box. And so yeah, I've tried...yeah, I went through a program of trial and error with dietician and a naturopath to go through...figure out what was triggering me or figure out what was making my symptoms worse, and all that kind of thing. So it's definitely valuable doing that.
Emma: Yeah. And what were the triggers for you?
Natarsha: Oh, specific foods, I discovered. So, for example, carbonated drinks, they just don't agree with me. So I just completely stay away from them. Yeah, that's just one. But there are a whole bunch of little specific ones. I can't eat cabbage or asparagus and things like that. There was no rhyme or reason I discovered. So it took a lot of trial and error and a lot of time to figure out what was doing what and what works and what doesn't.
Emma: And do you think doing that all on your own and trying to figure that out all on your own, I imagine it would be so hard, and this is where the care of a good clinician can be so helpful to try and shortcut that process. Because there's long times to diagnosis, treatment options, it's a trial and error approach, it just maybe would help shortcut that process for people.
Natarsha: Yeah, absolutely. I don't think I could have gone through the dietary changes and those trial and error things without the help of my dietitian and naturopath. I wouldn't have been able to do it alone. It was too complex. It really needed that specialty understanding and oversight to get it right, and to make the changes also without harming myself.
Emma: Yeah, exactly. And as you've really highlighted, individualisation is so key. So for you, cabbage is a no, but maybe for another woman it could be a yes. There's no blanket rules here. It's always about trying to find out for the individual what is causing inflammation and reactivity within the body.
Natarsha: Yeah, absolutely. And then also the extent to which you're actually able to cut it out.
Emma: Yeah. Both.
Natarsha: So if I had to cut out garlic and onion from my diet, I basically wouldn't be able to eat anything that my family cooks because it's such a staple of our cultural food.
Emma: Yeah, yeah. Yeah, of course. Actually, Monash Uni have recently done a research callout for the endo diet study. It's looking at assessing women with endometriosis plus gut symptoms, looking at how they're affected by a low FODMAP diet. Interestingly, they're also studying changes to both the gut and the vaginal microbiome. Now, gut health, how has that impacted you?
Natarsha: Yeah, so I mean, I have IBS symptoms as well as...as I said, kind of go hand in hand with endo for a lot of people. And so, gut health has been a real focus of the work that I've done with my dietician and naturopath. And so I did go through a low FODMAP diet elimination to figure out whether there were any specific FODMAPs that were triggering me. And that's how I identified some of those triggers, but it was a really difficult and long process.
Emma: Yeah, it is a lengthy process. And I wish it was easier, but it simply isn't. But then once you know, you know. That's the thing.
And now, March in 2021, RANZCOG published the first Australian clinical guideline on the diagnosis and management of endometriosis and they outlined three priority areas. There was awareness and education, then clinical management and care, and then finally, there was research. Now, this is a big step forward for patients. How do you think this might change the patient experience?
Natarsha: Look, I think any improvement in awareness, education, management, care, and research is going to be positive for the community and for patients. I mean, the more awareness there is, the less in the dark and the less we suffer in silence. The better care there is from a clinical perspective, the faster we'll achieve diagnosis, and the better overall patient experience there will be. And I think, look, there has been I think a little bit of criticism of these guidelines but you have to start somewhere, and we can't let the perfect be the enemy of the good. And this is good. This is progress. And it's a foundation from which to build for better outcomes for patients.
Emma: Yeah, look, I definitely think it's a step forward. When you're looking at the breakdown of how the funds are allocated for this, I would like to see...Of course, research is super important to know that was around $16 million on research. But then clinical care and management was around $660,000. So I look at that discrepancy, and because I guess I look at things through a lens of clinical experience, it's this clinical management and care that's the human part of it, where there is a woman sitting across the table from you. And if we could get more funds into that clinical management, I'd be so happy.
Natarsha: Yeah, I think more funds are needed in every column there.
Emma: Yeah. But I guess yes, this is a start and it's raising awareness. I mean, I have to say that more women that come in to see me ask the question now, "Do you think I could have endometriosis?" rather than me saying to the patient, "Maybe you have endometriosis and we need to look into it." So I guess that alone tells me that education and awareness is happening.
Natarsha: Absolutely. That's progress. Because years ago, certainly, when I was in my early 20s, I'd never heard of endometriosis.
Emma: Yeah, it's not uncommon, not uncommon at all.
Is there anything else you'd like our audience to understand or to know about endometriosis from that patient perspective? You've highlighted some really interesting things for us all to think about. But is there anything else you'd like us to know?
Natarsha: I think the key thing that I would want to add is there's no cookie-cutter patient. There's no cookie-cutter endo patient. Everyone's different. The disease will present differently in every person. So listen to the experiences of the women and the people around you who have endometriosis and just try and understand. Just because you know some person at work, their experience isn't going to be the same as your sister or your mother or your niece. It's going to be different for everybody.
Emma: Yeah, and I really love that. individualisation is absolutely key in everything we do from a patient care-centred model, which is what we are all aiming to do.
Thank you so much for joining us today, Natarsha. The key points I've taken away are that surgery is a treatment option, it is not a cure. And the art of self-compassion is important for women with endometriosis. And that individualisation, there is no cookie-cutter with this disease, everybody is different.
But thank you so much for sharing all of those insights from the patient perspective with endometriosis. I think they're quite profound. And my hope is that with the increased amount of research occurring, that early and appropriate symptom management plans, as well as reduced diagnosis times, will actually start occurring.
Thank you everyone for listening today. Don't forget you can find all the show notes, transcripts, and other resources from today's episode on the FX Medicine website. I'm Emma Sutherland, and thanks for joining us. We'll see you next time.
About Natarsha Terreiro
Natarsha is the NSW Coordinator for Endometriosis Australia, a nationally accredited charity which aims to increase recognition of endometriosis, provide endometriosis education programs, and help fund endometriosis research.
Natarsha didn't know much about endometriosis until her mid-20s, despite already having spent a decade struggling with its symptoms. After her chronic pain progressed to become debilitating in early 2018, she asked her doctor whether endo could be the cause, and was eventually diagnosed via surgery in late 2018. Now, she is volunteering for Endometriosis Australia to raise much-needed awareness in the public, in workplaces, and among policy-makers, in the hope of improving outcomes for other people facing these challenges.