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Nine Years To Be Believed: The Endometriosis Diagnosis Crisis, The Surgeon Allegedly Performing Unnecessary Endo Surgery & Why Pain Science Education Needs A Female Rewrite | Dr Millie Mardon (PhD)
79 Plays15 days ago
Dr Millie Mardon is a pelvic pain researcher at Western Sydney University with her own lived experience of the condition. Diagnosed with endometriosis at 14 after years of debilitating period pain, Millie navigated surgeries and a complex healthcare system — and is now happy to say she is pain-free. That experience became the foundation of her entire research career.
RESOURCES:
- Try Pain Coach for free
- Millie's Research "I Wish I Knew Then What I Know Now"
- Millie's Instagram
- Millie's researcher profile
KEY TOPICS:
0:00 — Introduction & trailer
1:25 — Why Millie devoted her life to pelvic pain research
3:12 — Millie's personal story: endometriosis from her first period
3:36 — The 7–9 year diagnosis delay in Australia — and why it matters
7:23 — The role of parental advocacy in getting answers
9:26 — Is a diagnosis the be-all and end-all?
12:55 — Pain-free for over 10 years
14:06 — What Millie thinks made the difference in her recovery
16:17 — "I Wish I Knew Then What I Know Now" — her landmark research study
18:05 — The 4 pain science education concepts that actually help people with pelvic pain
22:34 — Where lifestyle fits into pain: sleep, stress, diet & exercise
25:40 — How a medical scientist ended up in pain research
27:24 — The influence of Lorimer Moseley, David Butler & Explain Pain
29:45 — What actually is endometriosis?
33:20 — Prevalence: 1 in 7 women, 1 in 5 with persistent pelvic pain
34:48 — Why is endometriosis still so underfunded?
40:09 — Surgery for endometriosis: what does the research actually say?
40:43 — The Melbourne surgery scandal (ABC Four Corners: Scarred)
42:05 — The real numbers: 50% improve, 25% stay the same, 25% get worse
43:26 — Ablation vs excision: which works better and why
48:38 — The danger of swinging too far — biomedical vs biopsychosocial
52:46 — Millie's current research projects
53:28 — The pelvic pain social media campaign for young people
54:39 — The EndoEd trial: pain science education before laparoscopy
56:14 — The big unanswered question: why do some people get better and others don't?
57:14 — Gut health and endometriosis: 97% of people have GI symptoms
59:50 — Millie's parting advice for anyone navigating pelvic pain
Recommended
Transcript
Diagnosis Journey and Systemic Challenges
00:00:00
Speaker
It took me two years to be diagnosed with endometriosis. I think the average to diagnosis in Australia is around seven to nine years, which is crazy. Women have just been dismissed and told they're hypercontracts and full of anxiety and told that they're making things up.
00:00:18
Speaker
for literally centuries. It's been alleged a surgeon in Melbourne performed unnecessary surgeries surgeries on people with endo, removing organs, removing ovaries, removing uteruses. But the pathology report coming back to actually say you don't have endo at all. Thankfully for now over 10 years, I'd say I'm pain free. Like I'm good. I feel almost like a phony having an endo label next to me.
00:00:47
Speaker
This podcast is not personalized medical advice. Consult a health professional before acting on anything discussed. Just give me 30 seconds before we start. Whether you're a clinician wanting better outcomes for your patients, someone living with chronic pain, or supporting someone who is, thank you for being a loyal listener.
00:01:07
Speaker
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00:01:25
Speaker
So Millie, I want you to let us know why have you devoted so much of your life to pelvic pain research? Yeah, so I think it's always been an interest of mine ever since um I guess not in terms of the research space, but it took up a lot of my life when I was a teenager going through my own experience of pelvic pain. So i guess that's where it all really began. um and having my own experience of navigating pelvic pain with endometriosis as a teenager, so like navigating the healthcare system and impacts to school and social life.
00:02:04
Speaker
um and managing that from a medical aspect as well. So um it's something that's always been of interest of mine. And I think when I went to uni, I never went in with it thinking I'm going to come out of this being a pelvic pain researcher. I just sort of,
00:02:19
Speaker
somehow came down that path, um but I've really enjoyed it. I think it's such a fascinating and really unexplored area of research. i mean, we're slowly learning a little bit more, but compared to other areas in the pain space, we really don't know that much about pelvic pain. um So I think that's what fascinates me a lot is like, there's just so many unanswered questions and how we can better support people living with pelvic pain as well.
00:02:48
Speaker
Mm-hmm. I really admire people that have had like a crappy lived experience, they've suffered and they've turned that suffering into something sort of meaningful, you know, to help others.
00:02:59
Speaker
um It can be, know, a struggle throughout that journey to get to that point. And I'd love to hear like some of your story around that because many people listening will be able to relate to it.
00:03:12
Speaker
Yeah, so sure yeah,
Early Diagnosis and Management of Endometriosis
00:03:14
Speaker
yeah, yeah, absolutely. So I think I just had really bad period pain from literally my first period. um And thankfully I had really good family support, especially with my mum who was like, oh, this is not right. Like I never got told that this is normal or part of being a woman. um So i think that really helped push me.
00:03:36
Speaker
to getting some answers for my pain as well. So um it took me two years to be diagnosed with endometriosis, which it seems like, oh my gosh, two years, that's such a long time. But in the scheme of endometriosis, I feel like that's actually quite short. So i think the average to diagnosis in Australia is around seven to nine years, which is crazy when you think about all the impacts unresolved or unmanaged pain can have on someone's life and their trajectory as well. um And so, yeah, I had really bad period pain and a bunch of other symptoms. Pelvic pain impacted me.
00:04:14
Speaker
Most of the time, i would say i was missing time away from school, just lots of bed rest, pain meds, um going to different doctors, ah trying to figure out what's going on. And then it wasn't until when I was 14 when I went in for a surgery and they found that I had endometriosis.
00:04:34
Speaker
Um, unfortunately that surgery didn't really do too much. Um, I also tried hormonal therapies as well, just to try and calm everything down, but yeah, it just didn't really, nothing really worked, unfortunately. Um, so I sort of bounced around cause I was a, I was a teenager. So I bounced around the peed side, the kid's pain side, and also the gynae side as well. Um, and then it wasn't until I was 17,
00:05:01
Speaker
I remember, I had a second surgery to remove more endometriosis and I tried a couple other things. And I think that's what really helped improve. So surgery alongside, I went and saw a pelvic health physio. They were really, really good looking at the role of pelvic floor muscles and just sort of more that holistic approach to pain as well. um But also seeing like a dietician, that was really helpful too, just to um address any diet-based strategies. And I think as well, just a big thing with support system, having really good people around you friends that you were able to talk to um I tried to stick with my community sport as much as possible. i was really involved in dancing and netball and softball and so whilst pain did interrupt me some stages i tried to remain as active as possible and so i think that community aspect often gets overlooked but it plays such an important role in supporting and trying to you know go about your daily living and your activities that you really enjoy yeah i think that had such an important role as well it's uh yeah not an uncommon story although
00:06:16
Speaker
some of the part of it which you highlighted is uncommon to be you know early diagnosed which two years that as you mentioned seems like a long time but in as we know what the average is and especially you know it's I would assume or hope that it's improving um i don't know if we have any ah data to support that but But the fact that it was, you know, back when you were, um how long ago was that, Millie, just for... 14.
Role of Support Systems in Endometriosis Management
00:06:43
Speaker
So, um my gosh, 14 years ago. That's kind of scary to think about.
00:06:48
Speaker
I've lived part of my life with an endolabel on me. So, yeah, crazy. I think it's definitely decreasing but it's still horrific like it's still way too long um i think with awareness and more recognition better access to things like specialized ultrasound it's getting diagnosed a lot better but um then have to find ways to manage it as well because people also shouldn't wait seven to nine years for a label for them their pain to be oh now we need to manage it like as soon as someone has pain they should be managed um so that's sort of what i'm really passionate about
00:07:23
Speaker
that is That is very important. I want it i want to want to go back there. Don't let me forget that. um but But what role does advocacy have in it? Like your mum, go mum, mum Martin.
00:07:35
Speaker
um But what role does that have? Like for parents out there that have daughters, like how important and crucial is that to... First of all, just validate the pain for what it is. And then second of all, to to lead to some sort of interventions or treatment options.
00:07:54
Speaker
Oh, so important. So and but like you're a kid, you can't drive, you can't access the specialist. So you have to have someone in your corner advocating for yourself. And like you don't know what words to describe, um especially when you're just sort of navigating being a teenager and all of these those changes that come with that. So um i think having that support system is literally vital. I don't know how I would have been able to do it without it or how people do, like hats off to them. um But I think as well, I very much recognise my privilege in terms of I grew up in a country town. and We had actually pretty good paediatricians where I lived and they were very proactive with things and sent us to Women's and Kids Hospital in Adelaide. um But also, you know, we were
00:08:43
Speaker
my family was able to support and do that and drive the three and a half hours to bring to Adelaide, take time off of work, um, and access private specialists as well. So, um I think I'm very lucky and privileged in that aspect. Cause I know that does also play an important role, um in people's lives as well. And just the future outcomes for people living with pain. So, um having the support, yes, is one aspect, but then having the resources to be out to access that as well, I think is so important. And if there's any way we can improve, especially the public healthcare system in terms of pain management, I think that's a critical area where we can potentially do a little bit better.
00:09:26
Speaker
Yeah, yeah. You mentioned there like Because obviously there's a sense-making process for anyone. They're trying to let go, what's going on? Why is this happening to me? How important do you think a diagnosis is in that process?
00:09:42
Speaker
um And is it the be-all and end-all? Yeah, like there's, it I guess, some nuance around there because sometimes with diagnosis, diagnosis is only helpful if it leads to good treatment options, right? And sometimes there's a bunch of conditions that I work with that although a diagnosis can be helpful, sometimes it doesn't really improve outcomes necessarily. Yeah. um I think it's so individual. I don't think I'm, I've never really been a person that's held labels too close to my heart. or Not that I can recall way. I'm sure it would have been
00:10:21
Speaker
validating at the time but I can't sit back and reflect and think this was the best day of my life for getting an answer to my pain I think probably potentially because endometriosis there is no cure so it is very symptom-based management and so yeah while I did have the surgery and they did remove things my management didn't really change that much afterwards I still sort of kept up the things I was doing beforehand um So for me personally, it didn't help that much. And maybe that's because my support system was really, really good. Like I didn't have to convince anyone i had this problem or this pain. Like I was believed from the get go, which is amazing. Same with friends, I remember discussing like any symptoms we had and other friends saying, yeah, like I've got similar things or I've got period pain. And again, I didn't feel like I needed that validation in the form of a diagnosis, which again, I'm quite grateful for. I think that's just the type of person I am. But I know for others, if they've had a different experience where
00:11:30
Speaker
They've got no support. They're not getting any validation. They're not getting any reassurance. um And their management is just really, it's not happening, basically. That diagnosis can be really important and sort of steer them down a potential pathway that's helpful for them. So I think it probably comes down to the individual for me.
00:11:49
Speaker
Thankfully, it didn't play a role so much. um But for others, I know that it does. One thing that you've mentioned that is so important is the validation piece, regardless of the diagnosis um as the end result, you know, just validation that it's real and that, and if, and for some people that is required, know, surgeries, not surgery, um diagnosis is required for that to happen.
00:12:14
Speaker
um And it does obviously open up different treatment options, including like the surgical pathways that that you can go down. So yeah, but i I just wanted to hear your thoughts around that because Yeah, sometimes i wonder how helpful for some of my patients, because I work in persistent pain, ah how helpful trying to get a biomedical diagnosis really is in some circumstances. And some people just flat out don't want to know.
00:12:42
Speaker
Yeah.
Long-term Management and Personal Choices
00:12:44
Speaker
Interestingly. Yeah, well, I've been offered to have other ultrasound scans and things like just to see if it's, I kind of don't want to. um um Because thankfully,
00:12:55
Speaker
for now over 10 years, I'd say I'm pain-free. Like I'm good. I feel almost like a phony having an endo label next to me. I guess technically I still do, you know, there's no cure for endo. um But yeah, i and i I kind of just, I don't want to. I'm like, I'm fine.
00:13:13
Speaker
At the moment, everything's okay. so later down the track, maybe if things flare up, that's something I'll go down. But that's a decision for later future Millie. For me at the moment,
00:13:26
Speaker
yeah, it doesn't really impact me that much. So I'm cool with where I'm at, but I know for other people, it's that, that validation and, um and speaking to participants who I do research with, I think like doing interviews with people, a key thing that always comes back is this person was so nice and they just listened to me and said, like, I'm sorry. And that sucks. Validated their pain as real.
00:13:52
Speaker
And just that alone can move mountains for some people um and that's that's what I've experienced as well. Yeah, yeah. It's amazing to hear that you're doing so well.
00:14:06
Speaker
What do you think, ah like, is it ah a fluke? Are you just lucky? Was there any strategies or things that you feel like played a role in that? Obviously, you've got a very scientific view and so do I and, like, you know, you're just one of, you know,
00:14:23
Speaker
of many cases with different and varying results. But is there anything that you have, you feel like was pivotal in that process for you? I think probably early management and early diagnosis, I guess. Whilst my pain wasn't, you know, I wouldn't say it was managed well, um I knew I had care quite early on from when I started having symptoms. And I think that's so important just to try and get on top of things at the beginning rather than letting things go on down the track, you know, and hearing messages like, oh, that's normal or you'll be fine or just suck it up. um
00:15:02
Speaker
I think that plays a critical role. I'm always going to come back to support network as well and having that. I think that's so undervalued and underutilised as well um and recognising that support network that you have with family, friends, your work colleagues as well. um Teachers, if you're at school, they they play such an important role in fostering that environment and creating that safe environment for you. So, I think that's also super important. um
00:15:35
Speaker
And again, I'm using my scientific brain. I wouldn't have thought of this at the time, but I think um finding the right healthcare professionals for you um and I guess doing that multi-pronged approach with, okay, I had surgery with a really good surgeon. um i'd try it I did the pelvic health physiotherapy. I looked at diet stuff.
00:15:58
Speaker
sleep, stress. um So I sort of looked at all of that combined. take Medication also played a big role. So i think having all of those bases covered um rather than just going all in on one thing um or nothing at all, I think that really helped too.
00:16:17
Speaker
Yeah. Yeah, there's some common threads in your story that I think people can take away, the validation, support network, and then really like a holistic approach. That word... as you know, is kind of butchered a little bit when it comes to holistic doesn't necessarily mean that it's not scientific, even though it has those kind of connotations sometimes. and i I want to move into your research, but I want to hear you answer a question that your research actually asked, which is you have a research study called I wish I knew then what I know now.
Research Insights and Pain Management
00:16:53
Speaker
what What is that for you personally? you You may have touched on them, but if there's anything else that you haven't, what would that be? I think it's probably that um pain is complex, but that opens up different opportunities. so um i guess not thinking of pain as this black and white thing that's super simple and easy to solve. Like, no, it's a complex thing involving many different biological processes and influenced by many different things. um Whilst that does sound scary, the good part is is that like that means there's so many different things we can do. And that what that looks like is different for each individual person. So what works for one person might not work for another person. So um i think that's probably the main thing that that good great I like to carry on, yeah.
00:17:50
Speaker
what What did the study find? So when, obviously that's the title, and I'm assuming you asked the question, you know, what has helped you along your journey? yeah what What are the key sort of findings that came out of that study?
00:18:05
Speaker
Yeah, cool. You'll be testing my knowledge. um So the first one was really learning about the role of the brain and the nervous system in the experience of pain. So recognizing how the brain and the nervous system change over time with pain. persistent pain and how that changes from acute to chronic. um So people really liked this because it validated that their pain is a real experience. There's biological processes that are going on all the time that sort of explain why you're feeling this really nasty feeling. Um, and that also ah gave people the opportunity to better communicate their pelvic pain as well, because talking about pain with periods or sex or going to the toilet are not sexy subjects. And people don't want to be talking over dinner about that, but being able to talk about, oh well, the role of my brain and the nervous system, how things become more sensitized over time was really helpful. So it provided that avenue to better communicate things and better relate as well to people because,
00:19:07
Speaker
everyone's got a brain and a nervous system. um And then the second concept was learning about how tissue damage or tissue pathology doesn't always correlate to the amount of pain someone has. um And that was specifically in the endometriosis context. We know that the amount of endo lesions that you have or where they are in the body doesn't amount to how much pelvic pain you might experience. Like people can have not much endo at all, but have really, really bad pain.
00:19:39
Speaker
Some people have no pain at all and they've got endo lesions everywhere. And the reason they find that out is because they have trouble falling pregnant. So they get investigated for it. So um recognizing that those two don't always add up. um And that really provided reassurance to people that like every time they have a pelvic pain flare, it doesn't necessarily mean, oh my gosh, my endo is getting worse or things are getting worse. it's um Sometimes that that just happens and we need to learn to or figure out ways to manage those flares. um Then the third concept was learning how, okay, well, if it's not all about the tissues and your body, what is it about? And it's about
00:20:18
Speaker
those psychological and social factors that can also influence pain. And by learning that pain can be influenced by many different things helps people find better ways to manage it. So sleep and stress, I feel like are two things.
00:20:35
Speaker
Oh my gosh, they play such a big role. I don't know about you and your clinical experience, but poor sleep, mobile phones before bed, not helpful. um And stress as well. That can be anything like having being sick from a cold to, oh my gosh, I've got this work deadline or uni deadline and I'm not going to get it done and I need a cram for it. um They're all different stresses in the body that can then potentially result in a pain flare.
00:21:03
Speaker
But actually learning about that, okay, well now I can implement different strategies. I can improve my sleep. could be diet, might have to reduce your coffee intake and you can't have five cups of coffee, but maybe let's reduce it to two and see how you go. or it might be certain foods. um So figuring that out, and again, individual for different people. um And then the last concept that was important was learning that pain can change over time, slowly. It's not an overnight click your fingers and everyone's healed and we're all good. But sticking at those strategies and addressing those things that might have a role in someone's pain can actually change and improve things over time.
00:21:43
Speaker
And this isn't saying that everyone's going to be cured of their chronic pain. What change looks like will be different for different people. So it might be i can...
00:21:54
Speaker
you know, run around with my kids in the backyard for half an hour when I couldn't previously, or I can get back to doing my favorite sport or whatever activity or just being able to work five days a week instead of three, whatever it is for that person. But learning that pain can change over time was really empowering to sort of stick at it and know that things can improve.
00:22:18
Speaker
I put you on the spot, but I only read this this morning. So I think you've nailed it. I think you've got all four. No, I can't think of one that you've you've missed. Because, you know, although you've done all the research on it, it's hard to recall on the spot. So oh well done.
00:22:34
Speaker
i You probably saw me grinning from ear to ear when you talked about sleep and stress. Yeah. I believe so much in that that I actually built a tool called Pain Coach, which which in a nutshell, it tries to find lifestyle targets for the treatment of persistent pain. um yeah So I looked at things like sleep, exercise, social connection, and psychological well-being um and nutrition, which is pretty much you've touched on all of them. you...
00:23:03
Speaker
can you
00:23:06
Speaker
sell my product for me? No, no. ki No, but like, why, why are those things so important? Like, I think that there is a bit of disconnect and,
00:23:18
Speaker
What role do they play? So you mentioned there's like sort of this mind-body component, there's this nervous system involved and also there's no doubt structures involved, right?
00:23:29
Speaker
um And so these things combine to produce pain. Where does lifestyle fit into those kind of factors? I think it's everything really. Like they impact everything.
00:23:43
Speaker
literally everything and that's what pain is and involves um yeah I just I think there's sort of that all-encompassing like sleep is how your body heals and recovers um so it's it makes sense that you know if sleep isn't quite right we're not gonna heal and recover in that in the best way possible um and same with stress like if you're stressed it's not only mind going it's your heart rate increasing it's your hormones going crazy and then you crash and again that involves your whole your whole body and when you're stressed or you're really tired you can't participate in
00:24:22
Speaker
the life activities that you want to and that all feeds into pain your overall mood and well-being so i think it's just they're just such such all-encompassing things um and I think they're things that anyone can be doing to better optimize and improve upon people with pain and without pain um especially yeah in that today's day and age with mobile phones and technology and yeah, um I'm awful. I'll be honest. i'm I'm bad. I've put my phone on downtime mode and I still just like get rid of the, I say go away with limits and give me Instagram back. um
00:25:01
Speaker
But I think, yeah, do they just, you know, they impact every facet of our life and our wellbeing. So it makes sense that they play such an intricate or are so closely connected with pain.
00:25:12
Speaker
Yeah, for sure. I think, a lot of people For a lot of people, the idea that pain just doesn't mean body damage, full stop, end of story, is like pretty eye-opening. I think that most of the general public don't sort of, they don't necessarily, I mean, I didn't before I studied pain science. You probably, like, youre you're shaking your head for those that are listening. um What, tell tell us about, um,
00:25:40
Speaker
Your journey into the like pain science education world. like Yeah. um So my degree was in medical science. I was a lab rat. So I had no idea about anything to do with allied health, chronic pain, like physios were the people that just walked around in their Lululemon. looked really cool and we were the nerdy people that had our goggles and lab coats on so um they were separate at uni there was no crossover or anything um until i saw a presentation i was always interested in research my honors was in pancreatic cancer tissue biomarkers so completely different but i went to a seminar where someone was talking about doing research with people who had a stroke and i was like
00:26:27
Speaker
You can do research with human beings. That's so cool. um And so, yeah, I just did some Googling and I think pain or chronic pain has just always been an interest of mine. um And it sounded, oh oh, this sounds cool. I could do this.
00:26:43
Speaker
And so yeah, that's sort of where it went down. Yeah, fascinating. um And I think we should probably both disclose Laura Mimoseley, David Butler, those guys have had an influence on both of us in the way that, you know, for you, you do research, but for me, like clinically and how practice.
00:27:07
Speaker
um What, tell us, like, because not everyone knows who Laura Mimoseley
Tailored Pain Education
00:27:13
Speaker
is. um if you're in the pain world, it'd be pretty surprising if you weren't. But if it outside of that, not everyone knows who those guys is at and what what impact they've had.
00:27:24
Speaker
Could you like just share your personal story of like the impact they've had on on you and the research that you're doing? Yeah, massively. I think, um yeah, Lorimer was the first person I talked to before doing my PhD.
00:27:39
Speaker
And I think he gave me Explain Pain and all of those books. And I read it and i was like, obviously, it's more towards a musculoskeletal outlook, there's nothing really to pelvic pain. And pelvic pain is a bit different that you don't injure yourself and then not really recover.
00:27:57
Speaker
And there are different nuances with the whole whole social aspect of pelvic pain. and And so I read it, I was like, all of this makes so much sense. But, excuse me, you have to edit that.
00:28:12
Speaker
We can edit it or you can be like a real human and this is not AI. um So yeah, a know what um so yeah I read Explain Pain and I was thinking, oh, that all this makes so much sense.
00:28:29
Speaker
But I was thinking back to me as like a 14 year old, 16 year old. with pelvic pain, wouldn't be able to understand this in terms of like the pelvic pain lens or being able to apply that to my situation. So i think that's where it really came from. Like, yes, this is such important information that needs to be, i guess, tailored and changed to suit the narrative of pelvic pain. So that's sort of where it stemmed from because,
00:28:53
Speaker
was like me, I had a, yeah, I had a biology background. um I could understand and sort of connect the dots myself, but 16 year old Millie would never have been able to do that or recognize that. And if education isn't really tailored to your experiences and circumstances,
00:29:12
Speaker
going mean nothing. Like you're just going to, that's useless, doesn't apply to me. So being able to then tailor that to the experiences of people with pelvic pain, I think that's where, that's where the buy-in, but also, you know, that's where it makes a real difference as well.
00:29:27
Speaker
Yeah. Is that the journey you're on? When's your, ah when's your Noi publication coming out? You have to talk to Noi about that. I mean, we'd love to. um and we've chatted and we keep hearing, we want an explain pain for pelvic pain. So hopefully that's in the pipeline somewhere.
00:29:45
Speaker
Awesome. so You're very coy about it. Maybe but it's not on the cards because if it's not, we can rally. we'll We'll try to make it happen. True. You should just um drum up some public attention. I mean, then they can't say no, right? That's right. Yeah. That's right. Let's shift gears because I want to go back to the body and the structure. So like what what is what is endometriosis? Like tell us, like for those that are going, like we hear a lot about it, but it's good for everyone to know kind of what it is and what's happening.
Understanding Endometriosis
00:30:18
Speaker
um Just on a very basic level. Yeah, so endometriosis is where tissue that's similar but not exactly the same as the lining of the uterus grows elsewhere outside the body, normally in the pelvic cavity. So could be around the fallopian tubes or in the pouch of Douglas. Yes, we have a pouch. Does that mean like kangaroos? Who knows? um It can also grow around the bladder, bowel, in rare – I mean, it's not – It's not common, but it's not uncommon. It can grow elsewhere. So there's been cases of endo around the heart and on the diaphragm.
00:30:56
Speaker
It's a wild thing. um And so basically the endometriosis lesions grow. and We don't know how they get there. There's some theories, but none of them fully explain what's going on.
00:31:09
Speaker
um But what happens is with every period, it sheds like the lining like normal. So you get bleeding, inflammation, sensitizes nerves, ramps up the pain experience.
00:31:22
Speaker
there's a lot of inflammation. Oestrogen also makes its own estrogen, which can help with sensitization and just creating that probe or that really inflamed environment.
00:31:35
Speaker
And yeah, it's not nice. It can impact the function of organs. Let's say it can impact people's fertility. so yeah, it's yeah not very pleasant when you couple that with chronic pelvic pain and other pain as well. Like lots of people get ah pelvic floor muscle pain or pain going down their legs, their back.
00:31:56
Speaker
um Yeah, it's really not very nice. a i actually have like a client of mine that she has She has endometriosis. She found out because she was trying to fall pregnant.
00:32:12
Speaker
But she also has had leg symptoms for like 10 years. um And she has some conflicting diagnoses that could all contribute to that leg symptom. um And it's a challenge...
00:32:28
Speaker
for me to sort of like navigate that as a clinician as to like, well, is it the endo that's causing it? Is it the, you know, the hip pathology that's causing it? What's what's contributing to these symptoms?
00:32:39
Speaker
um And I kind of currently we're treating it like as if it is the hip, but in the back of my mind I'm always thinking, well, this, it could actually be related to the endo. She's actually scheduled for...
00:32:53
Speaker
for surgery. So that will also maybe influence my understanding of which one is contributing. ah That's a bit of a tangent, but all to say like the complexities of it, even clinically, when you're trying to navigate that um and then imagine and that as a patient trying to navigate that. So it's tricky and it's it does really suck. um What is the prevalence of of endometriosis roughly yeah so um current stats is around one in seven women or people assigned female at birth so it's very common and i think as awareness continues to drive up we'll probably see that number who decrease but increase in prevalence um
00:33:46
Speaker
Because so many people have gone undiagnosed for so long um and their pain's been ignored and no one's really looked into it. So i wouldn't be surprised if the true number of people with endo, that does increase. um and But with chronic pelvic pain or persistent pelvic pain, I think it's around one in five people. will experience that women um will experience that in their lifetime. So that also includes things like bladder pain, bowel pain, period pain, where there isn't really an identifiable cause like endo um and other types of pelvic pain. So Yeah, it's it's everywhere, but because it's seen as so embarrassing and taboo and like part of being a woman, lots of people just don't really talk about it or don't manage it, which is really, really sad. um
00:34:37
Speaker
And, yeah, we don't want that to be happening. So that's a huge prevalence. Therefore, there must be lots of money being poured into research, Millie, surely.
00:34:48
Speaker
ah You would think, you would think, but not really. um Compared to other conditions that have similar prevalence, ah the funding is small or they're very small pots of funding so we can't make big changes with funding.
00:35:05
Speaker
very small amounts of funding. So, i mean, it's definitely improved over time since I started my PhD. um We've seen increased calls, which is always exciting. And the government's investing with ah chronic pelvic pain and endometriosis clinics. um But I think the next step really is We need to evaluate them. Like, are they actually working? Can people get into them? um At the moment, I don't think, not that my knowledge, there's any plans for evaluating these kinds of things. So um making sure that we're doing that, obviously that requires money. um And yes, I think there's always room for improvement, but I know chronic pain in general is important.
00:35:47
Speaker
not funded amazingly when you compare things like cancer or heart disease dementia all of those so yeah oh yeah always always room for improvement in the women's health health space for sure and i think that probably the elephant in the room is that sometimes it's funded things are funded because of Well, prevalence is one of them, hopefully, but also just because of, like, industry ties and those kind of things. It gets a bit murky um sometimes.
00:36:24
Speaker
Yeah. Without being a full-on conspiracy theorist. But, like, it sometimes the things that get funding is because, like, well, you know, someone can make money, a good money out of a certain thing. And so therefore that funding pot increases because it's privately funded. And um yeah, I'm sure you know about all that sort of bureaucracy, but ah do you have any thoughts on that?
00:36:51
Speaker
Yeah, it's it's so hard because yeah you see the ethical side of things um and obviously, you know, if you're an ethical researcher, you'll handle that appropriately with the funding not really having a role education.
00:37:06
Speaker
the research study itself and how it's conducted and what the outcomes are but obviously it does steer the direction to be like okay well we're going to focus on this particular aspect because it could make some money um but then if we don't have that then we would have not much at all so i'd say i'm sort of in two camps of Yeah, you can see some motives for funding particular research might not be in the best of places. And it's always nice if there's other options and it does help people. um
00:37:41
Speaker
But if it comes from solely that background of I just want to make... ah quick buck on people um yeah that's obviously not pleasant but then i'm also like oh if we don't have sometimes these are the only funding avenues we have and if that's a way to drum up interest from government um and you know like yeah bigger grant bodies then potentially that's a step we have to go down so yeah it's it's tricky it's very tricky and i guess like it's it's you know it's not a bad thing that industry is because
00:38:13
Speaker
The other the ah ah the flip side of the argument is that if it's not tied with industry, then does it get does the research actually get packaged in a way that is actually helpful and provides value to people with living with endometriosis, for example? Yeah. um So, yeah, it's interesting because I've only just started the research process and I know how hard it is, not in a PhD way, but we're doing a pilot study on pain coach, which which is that software that I spoke to you about. Yeah.
00:38:44
Speaker
We are not funding it, um for the record. um And we it just happens that researcher, Mark Overton, down in University of Technology, Sydney, is like sort of in that area research and say it was kind of a win-win situation. But, um yeah, I think that there needs to be a collaboration between...
00:39:06
Speaker
industry and research and, like, just research and just disseminating it to the general public. But also you need to be mindful of some of the pitfalls, obviously, love that.
00:39:18
Speaker
Yeah, and I think it's how how do you communicate that to the public as well? Because i know some people get, which rightly so, like, if money has been wasted and there's always dodgy people that I think ruin the reputation for everyone else, um But how do you communicate that to the public and managing conflicts of interest and disclosures and all of that sort of stuff? But that's oh that's like a whole other tangent.
00:39:47
Speaker
going We're going probably too deep on that tangent. That was my fault, so I'll divert us. I want to talk about some of the – I mean, you've talked about the – in – In the summary, you've talked about some of the more conservative treatment options.
Ethical Concerns in Surgical Practices
00:40:03
Speaker
But when it comes to surgery, you've obviously been through surgery twice, I believe.
00:40:09
Speaker
Yeah. um What role do you think that surgery plays? What's the landscape of the research around surgery for endometriosis? Is it the be all and end all?
00:40:19
Speaker
What can you tell people? Oh, that's also opening up an interesting can of worms, especially with Some of the, I'm not sure if you're familiar with some of the stuff that's come out in the media over the last month to do with endometriosis surgery, which is, yeah, just horrific. And um reading those articles and watching the ah the Four Corners episode was, yeah.
00:40:43
Speaker
Do you want to elaborate on that? Yeah. So it's been alleged a surgeon in Melbourne um has performed unnecessary surgery surgeries on people with endo and saying that they they have really bad endo. We took it all out. And then every sort of pain flare or... Every time they go in, they say, yeah, well, let's do another surgery, removing organs, moving ovaries, removing uteruses. and But the pathology report coming back to actually say you don't have endo at all. um And then also charging the Medicare patients.
00:41:20
Speaker
number, putting that down as the severe case of endo. So you get paid more for those types of surgeries when yeah nothing's actually there. So yeah, there's been a big investigation into that and it's continuing and it's with APRA and all of what's that.
00:41:34
Speaker
ah So yeah, it's just absolutely heartbreaking to hear these people you know, i have put their trust and, you know, be vulnerable with this medical professional who's gone ahead and just, you know, destroyed their trust and ruined their lives, essentially. It's just been horrific. um So, yeah, endosurgery is a big topic at the moment. um I think it always continues to be. so I guess the research is...
00:42:05
Speaker
There's not heaps and heaps of research out there, but the research that we have at the moment through randomized controlled trials demonstrates that around, Maybe about 50% of the people who undergo a laparoscopy for endometriosis gets better. 25% of people stay the same in terms of their pain, I'll say, and 25% get worse. um And there's two different surgery techniques that they cough commonly use. there's ablation where they get a laser and they burn off the lesions, or there is excision surgery where they go in and cut it out.
00:42:41
Speaker
And it seems to be that excision surgery performs a bit better than ablation because you're sort of removing it removing it all rather than just burning the surface of it. um But, yeah, the research shows that there are mixed outcomes and when they look at different things. So, yeah. chronic pelvic pain compared to like pain with sex, things are a little bit different and deep endometriosis, which is like really, really bad endo growing on your bowel, your bladder compared to superficial endo where it's just sort of on the lining of your organs. There's not, you know, more mild disease. Put that lightly because that mild doesn't mean you don't have any symptoms. um Again, surgery might be better for people with the more extensive endometriosis, but I guess,
00:43:26
Speaker
what people are seeing clinically and what I guess I'm bit more of an advocate for, but again, I'm not a clinician, so I don't want overstep in any way, is having, you know, one or two good surgeries done by the right person for you at the right time for that person as well. So um ideally, the lesser amount surgeries, the better because you're less likely to get adhesions and scar tissue and other complications from surgery. Like surgery is massive.
00:43:56
Speaker
They're going into your abdomen, cutting things out. um That isn't something that should be taken lightly. Like it's a serious procedure. So having it done properly, once or twice with a really good surgeon who knows what they're doing at the right time for you, for the right person, with the right indications. I think that's sort of what we're aiming to do rather than have, you know, three, four, five, six, seven. There's people who have more than 10 endosurgeries, which, yeah,
00:44:29
Speaker
try and avoid that I think that's what we're after um one and done I guess but recognizing the surgeon who's doing it and make sure it's at the right time for that person as well what is the right time what are the right indications do you have any thoughts on that or is that still like an evolving space Yeah, I think it's still an evolving space, probably earlier the better.
00:44:55
Speaker
um It seems like just getting on top of things a little bit earlier rather than letting things go on for potentially decades unresolved. um But I think it also depends on the person what stage of life they're at as well. Like some people are happy just to manage things with medication or other strategies and they're going along okay. Maybe they had a diagnosis through ultrasound and they're like,
00:45:18
Speaker
you know what, surgery's not really for me and that's okay. But I think it's all down to the individual and having that conversation with your doctor and just making sure you've explored all avenues as well um and not just, I guess, putting it down to having I must have one surgery whatever.
00:45:37
Speaker
Surgery is my only option exploring things, like especially if you're on a wait list. um I think that's why it's so important to educate people about how pain works. There's lots of other things we can do because I know some people, not of a fault of their own, oh, it's what they're told by their doctors, like you'll have to have surgery and that's all you can do and you're very limited to that. But hopefully through education we can sort of open that up a little bit more and people can be working on other things. And if they're going to have surgery, put their body in, you know, – I guess, the prime condition to have better outcomes post-surgery too, so through some exercise and other lifestyle factors too.
00:46:14
Speaker
well I guess you were probably speaking to the outcomes for pain. What about outcomes with surgery for fertility reasons?
00:46:25
Speaker
Oh, I feel like that's probably tapping beyond my expertise a little bit. um guru so i'm i'm more than happy to say i am not across all of that information um but obviously if endometriosis is impacting like your ovaries and your fallopian tubes and the functioning of the organs then i think surgery is often indicated but again talk to your doctor because they'll know a lot more than me great great answer i love that and i i'm deaf i can't add anything so we'll move right we'll move right along um yeah i feel like um that alleged case you've got to kind of say alleged although there seems to be some evidence mounting yeah is is super super sad and sadly it
00:47:18
Speaker
it's probably not just endometriosis surgery. There's all sorts of different surgeries. And it's really sad that, you know, a bad, what is it? A bad egg spores the bunch.
00:47:29
Speaker
Yeah, the whole egg. It's definitely not egg, but you what I'm saying. And I like, cause you know, I work alongside some surgeons from time to time. They're great people. They want good outcomes for people and they really do care. um But it's so sad. I wonder like,
00:47:48
Speaker
the obviously this was kind of something that was kind of taboo, forgotten, and it's becoming more, thankfully, um more out in the open, people understand it, and and people are being, you validated and not just dismissed with with different symptom symptoms that could be related to pelvic pain or endometriosis, which is great.
00:48:12
Speaker
But has the, like, obviously the most validating validating thing sometimes can be surgery, right? Like, okay, I'm really taken serious if if they're going to operate on me.
00:48:22
Speaker
um Do you think that that that has sort of like the pendulum sort of swung without like decent research around it yet, which is fair enough because we've got to act with what the information we have so far?
00:48:38
Speaker
so it's tricky to say. I think... like women have just been dismissed and told they're hypercontracts and full of anxiety and told that they're making things up for literally centuries. And so now to have something where can like, I forgot that, physical proof, um obviously people are going to,
00:49:04
Speaker
hold strongly on to that and, you know, so they should as well. I think it's also important to say, I'm not sure how, yeah, what your experience is like, but obviously we had this very biomedical view of pain where it was all about the body and the tissues and that was it. And then we've gone, you know, biopsychosocial where almost sometimes the bio is thrown out a little bit and we just focus on the psychosocial and that's where you get, it's all in your head, you're making it up, like you're just oversensitive, you just need a...
00:49:33
Speaker
you know It's all well and good to say sleep and all this. It's like, just need to sleep better. You just need to... It it's like puts blame on them almost that they're not eating right or doing enough exercise or doing whatever. um I think it's also important to recognise the bio is still part of it. So...
00:49:49
Speaker
For example, in endometriosis, those lesions, they do create a pro-inflammatory an inflamed environment that has impacts on your gut health um and your bowel and bladder function um and yeah just how you genderly genuinely feel with fatigue and poor mood. Yeah.
00:50:09
Speaker
So i think it's important to recognise that that does play an important role. um I think where we verge into dangerous territory is where we just, we go into that all or nothing approach where it's all about the lesions and surgery is the only option and we that's the only way we can deal with it and any pain player must be resolved through surgery and putting things out.
00:50:31
Speaker
But then it's also as equally dangerous as just to disregard it altogether and just say, no it's not important. Like focus on your mental health or focus on whatever other psychosocial contributor you want to add to that. um So I think it's really taking that holistic view. And I think that's where in my experience, I was so lucky where i had a really good surgeon. I dealt with that aspect of it.
00:50:58
Speaker
I dealt with the pelvic floor aspect of it. I dealt with the social aspect and the exercise by trying to participate in what I enjoy and kept going with my schooling and that sort of stuff. um So, yeah I think it's hard. You do see some people that are very like pro-surgery and that's only way to go.
00:51:17
Speaker
It's probably, don't know, in my opinion, it might not be the best way to go about it rather than taking that go back to that holistic point of view where bringing it all together dependent on the person if they need surgery and it's right for them, yeah plus or minus whatever else is going on in their life or could potentially benefit them as well.
00:51:34
Speaker
yeah Yeah, hopefully we move to a place where it's kind of, it's hard to know what's best for the person in front of us to a place where we can actually make more precise decisions around like what is best.
00:51:47
Speaker
But it is super sad to see that someone allegedly, um is doing unnecessary surgery for it. Like it's just a real shame given that trust has probably been building again um yeah for women that are suffering and then to see that just sort of torn down in a way is crappy. It's not just impacting those people. I think it's that community level of distress like being I think that's probably something that has gone unrecognised is that that community level of distress that can come about with one person's actions. So um I just hope from this that changes are made and things can be improved upon and better a regulation as well. Yeah. Yeah, it'll be ah I think it'll be a catalyst for change because there's a lot of conversation around it. if there's some positive that come out of it, um potentially that's that's it.
Educational Outreach and Community Support
00:52:46
Speaker
what um Tell us about some of the research you're currently doing. or Well, yeah, let's start with there. What are you currently looking at?
00:52:56
Speaker
Yeah, so um an area of interest of mine is, i guess, it's very driven by own experiences, is um the young adults or like teenagers and the young people with pelvic pain because early education, getting early management can put them on the right path um and not wading well into adulthood to address things. So I've been really interested in developing educational resources for young people. so
00:53:28
Speaker
co-designed a social media campaign that we'll hopefully launch soon that will be an Instagram account that will provide evidence-based information on pain science to pelvic pain, but also some more practical stuff as well. So, and that's been developed with young people. So they gave their opinions on what it all should be. We did originally want to do a website. That's what we came in with. But then young people like Google, who's that? We don't go online. and We learn through doom scrolling. that I'm not joking. That was a quote. um
00:54:03
Speaker
So we've pivoted to social media, trying to get them where they're at. ah So that'll be really cool. So we'll look to evaluate that and see, you know, how much reach and engagement that,
00:54:15
Speaker
social media campaign has um what else are we doing what's the what's the what will the um instagram is it called do you got a handle yeah it's pelvic pain matters there's an underscore in there somewhere okay uh oh no a full stop pelvic pain dot matters so it is a live account there's just nothing on there at the moment so Awesome. Coming soon.
00:54:39
Speaker
Coming soon. Yeah. um And what else have we got? um Yeah, just helping people with some different projects. So it's going to be a trial, a pilot trial called EndoEd. And that is an online education and self-management intervention for people about to undergo a laparoscopy. So they don't know if they've got endo or not. They've got suspected endo. They're going in for their laparoscopy where they might diagnose endo and endo.
00:55:08
Speaker
treat it or I might come out and find out they don't have endo. So we're doing some pain science education and some self-management pre-surgery, seeing if that improves outcomes post-surgery compared to just your standard info like this is endo, this is a laparoscopy. um So that'll be really cool as well. So we've got a couple of projects sort of in the pipeline. So yeah, I'm still really interested the education space and I guess finding ways along the, you know, from when symptoms start to when pain hopefully resolves or gets really, really good, um finding ways along that pipeline where we can sort of drop little nuggets of information and sort of help people navigate that journey. Yeah, that's sort of, I guess, where my research is heading down. Yeah, awesome. Awesome.
00:55:58
Speaker
If funding, because I know like funding and those kind of things does limit sometimes of research, if that was, let's just pretend there was a world where that didn't matter. And do anything you want in terms of research. Do you have some things that you would do?
00:56:14
Speaker
Like is there a research project that you're like, I would just love to do this? um i I don't know how I would do it, but I would just love to know. It's probably the same for any chronic pain really, but like why do some people get better and others don't?
00:56:31
Speaker
ah Again, like I can say what I think made me better, but we don't know. Like how i that would be fascinating. What is it about these people? Totally. We have ideas, but we don't really know. um That's probably an aspect of me and probably more around endometriosis as well because there is that – lesion biological component yeah i know there's our people trying to phenotype and see if there's different types of endos so you can really delve into that personalized medicine stuff um a bit beyond my expertise i'll leave that to the fancy lab people um yeah i'm just like why do some people get better and others don't i don't know
00:57:14
Speaker
duno For sure. Do you have any thoughts? i actually saw on your Instagram account, there was ah I clicked on it and it disappeared. It was gut health and endo.
00:57:26
Speaker
yes Yes. I mean, I'm interested in gut health more broadly for chronic pain because I think, you know, especially in the fibromyalgia space, there's like, you know, growing evidence there.
00:57:38
Speaker
um What was that? Like, is it was that something you were about to embark on or...? um It was going to be a student's, but unfortunately it just didn't turn out. um The project unfortunately didn't take off, which it um is a shame, but that happens in research. You know, many you see all these successes of papers being published and just as many successes, there's that many failures. So, um yeah, it was um going to be looking research.
00:58:04
Speaker
the role or like gastrointestinal symptoms. um i think they're going to collect some menstrual blood samples as well and look at um that microbiome as well. So, but yeah, I know gut health is definitely, it's sort of becoming a booming space.
00:58:21
Speaker
Yeah. ando I think um probably more recognition in terms of, um uh yeah getting better recognition that gut symptoms are related to endo because um yeah one of my students did a survey and i think was it 97 of people in this survey reported having a gastrointestinal symptom and like they have as well so yeah it's really really really prevalent but often overlooked i think who just like don't care but it has such an impact on people's life um when you consider bloating and yeah it's nasty so
00:58:56
Speaker
Yeah, it's definitely an area of looking into more and also just recognising those symptoms as part of it too. Yeah, yeah. And there's likely probably many reasons why gut s symptom symptoms are involved, including like that sensitivity that we're talking about in surrounding areas. But I just, I'm interested because ah hopefully it would open up new treatment modalities for people with endometriosis. um If they found that, you know, maybe diet can influence the gut microbiome and then by that endometriosis or, you know those things would be Cool. I love it when research is practical and because I'm a clinician and your research really is super practical. And yeah, thank you for all the work you do. It's not, it's not easy. um You guys don't get paid well enough that the value that you add to society. so yeah I really appreciate the work that you do.
00:59:50
Speaker
Lastly, i want you to give some parting words to someone that has pelvic pain, potentially diagnose endometriosis or other pelvic pain.
01:00:03
Speaker
um Yeah. What would your advice be for them? I think um I was going to say, don't give up, but I feel like that's condescending and we don't want that. That's like not good. I think um find, find your people, um whether like your medical professionals as well. i know it's a lot, um it's a lot of mental load navigating a chronic condition and ah pain condition as well and that impacts your thinking and your cognition but if it requires shopping around for your doctor if you can do it um find your people who will support you and uplift you and same with your friends um and mean you can't choose your family but hopefully they're supportive as well but find those people who you can
01:00:53
Speaker
you know, just share when life sucks um and just vent. But then also, you know, people that will uplift you and support you and help you um navigate this thing called life that we're all doing well. I got really philosophical. But, um yeah, I think just finding your people because it's amazing how much of an impact that can have when you're You know, like we do these research studies with focus groups, for example, with people. And just that notion of I'm not the only one and I'm not alone is massive. I think that tied in with validation is so important. So i think find your people. i think that's such a crucial first step, whether that's work colleagues or a community organisation through like sport or your library or your community.
01:01:39
Speaker
craft club or your book club I don't know find something um that you enjoy and find those people who enjoy that too so um you can create that safe and supportive environment and I think that's one of the key first steps to hopefully things go moving in a positive trajectory that's great advice well thanks heaps Millie really appreciate it i enjoyed the conversation um and yeah thank you for the work that you do oh good thanks so much for having me Awesome. Thanks.