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Straight Endo the Fire
25 Plays1 month ago
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Transcript
Introduction and Focus on Endometriosis
00:00:00
Speaker
Good morning, everyone. Welcome to another episode of This Might Sting. I'm Dr. Aiden Barron, and today I'm joined by my gorgeous co-host, Julie McCrossin-AM.
Millie Weaver's Experiences and Advocacy
00:00:08
Speaker
I'm really excited to get into the nuts and bolts of endometriosis with the founder of the Australian Endometriosis Foundation, Millie Weaver.
00:00:17
Speaker
Millie, thank you so much for joining us today. Good morning and thank you for having me. so great to have you here, Millie. And I want to acknowledge you. You are a lawyer, it's your working life, but that you were you've experienced the rigours of endometriosis from a very early age.
00:00:33
Speaker
I'm very mindful that particularly young women may have tuned in to learn about endometriosis and what's your fundamental message to them before we get into ah definition and the rigours of it and that challenge of getting a diagnosis?
00:00:47
Speaker
What's What's your message of hope to people who've tuned in with a dilemma? I think something that you should always be carrying with you when, whether you're trying to get that diagnosis, whether you're thinking about that diagnosis or whether you even have that diagnosis is your pain isn't normal. You deserve to be believed and you don't have to go through this alone.
00:01:08
Speaker
And you're in your late twenties and you had experience is very early in your teens that what you later discovered was endometriosis. So there's hope, isn't there, that if you get your diagnosis, get your multidisciplinary team, you can manage this condition.
00:01:25
Speaker
Absolutely. Real emphasis on the multidisciplinary team and finding a community of others just like you. It's a chronic disease. It doesn't have a cure, but there are ways in which you can manage the symptoms to live the best life for you.
00:01:41
Speaker
Well, look, let's hear from you and also from Dr. Aidan. You first, Millie.
Understanding Endometriosis
00:01:46
Speaker
How do you explain what is endometriosis? This is a great question and it unfortunately is one that's still contested when it really shouldn't be.
00:01:56
Speaker
Endometriosis is a chronic and inflammatory disease where tissue similar to the lining of the uterus grows outside of the uterus. So most often it is found in the pelvic cavity, but it's sometimes found in areas not connected at all with the uterus, like the bowel or the bladder.
00:02:15
Speaker
In fact, endometriosis hasn't been found on every major organ in the body, including the brain and the eyes. We know that because of where the disease grows, it can cause inflammation, adhesions, lead to the development of cysts, and all of these things together can lead to the person with the disease experiencing chronic and persistent pain.
00:02:39
Speaker
And what's an adhesion? That And I'm not a doctor, up is my understanding, is when the endometriosis lesion, which can be quite sticky, sits on an organ and leads and up another organ to stick to one another.
00:02:53
Speaker
So sometimes when a surgeon will go in to operate on someone with endometriosis, they'll see that organs are stuck to one another. This can be called frozen pelvis. And it's all just because of those nasty, sticky endometriosis lesions.
00:03:06
Speaker
And what I'm going to do now, i have a law background, I've never practiced, but I've often run panels with lawyers and I love to ask five lawyers the same question because you usually get five varied answers. So I'm now going to ask our doctor exactly the same question.
00:03:20
Speaker
Aidan, what is endometriosis? Look, I think Millie's absolutely nailed it. It's exactly as Millie said, you've got the proliferation of endometrial tissue outside of the endometrium, which is endo means inside.
00:03:34
Speaker
And the endometrial tissue is the tissue that lines the inside of the uterus. and it's not supposed to go outside of the uterus. Unfortunately, for one in seven women in Australia, it does.
00:03:47
Speaker
And exactly as Millie explained, it causes all sorts of issues. And the interesting thing about the endometrial tissue, so the tissue inside the uterus, is that it's highly responsive to hormonal fluctuations.
00:04:00
Speaker
So things like skin and bone tend to be fairly consistent and stable. Our bones don't suddenly grow big and then shrink down once a month. Unfortunately, our endometrial tissue in the human body is designed to proliferate, swell up, in almost inflame in a healthy way when it's in the right place and grow thicker in order to allow for implantation of an egg, which is fertilized by sperm.
00:04:26
Speaker
So it's part of a natural reproductive cycle. It sort of grows up and then comes down again, grows up and comes down again in response to hormonal fluctuations. that poses a really big issue when that tissue happens to occur in places it's not typically supposed to.
00:04:43
Speaker
And so exactly as Millie expertly explained, you get all these sequelae and side effects which cause pain, which cause chronic health issues, which cause adhesions in the bowel, which just the other day i was reading a case report of endometriosis in the lung causing coughing up blood.
00:05:01
Speaker
It's highly, highly rare and common that happens. And it's really interesting to me because I'm learning about this for the first time and I am the 70 year old who hasn't actually had a period for over 20 years.
00:05:12
Speaker
like Can you explain the link between what we're discussing and our periods? Because isn't that what this is all about? When you talk about it kind all coming down, that's when the blood comes out. That's our period. Am I wrong here?
00:05:25
Speaker
Do you want to go first, Millie, and then I'll come to Aidan? And don't apologise that you're an expert and a doctor. We want both the patient and the doctor perspective. But what's the link between endometriosis and the period, Millie?
00:05:38
Speaker
I will just jump in and because I'd be remiss not to. just to say that it isn't the endometrial tissue that's found in the uterus that is found cryophthalate. It's similar to. It's similar to, exactly.
00:05:51
Speaker
And I say that because this is one that's unfortunately a point of contention for a lot of patients because the way that researchers in particular approach this tissue is the way that we are coming up with cures and treatments and finding what causes it So when we have researchers in particular that say it's the same tissue inside of the uterus found outside the body, it actually really affects the way that we then move forward to treat the disease.
00:06:20
Speaker
So it's really important to make that distinction. It might seem minor, particularly if you're getting that diagnosis or looking how to support someone, but in the long-term, it's just important to keep that in mind.
00:06:32
Speaker
Otherwise, the link between The period and endometriosis, I think as Aiden really aptly pointed out, this is tissue that behaves very similar to endometrial lining.
00:06:44
Speaker
And so as a result, generally, I believe hormonally that tissue in can in some cases react like it would otherwise if you were having a period. So for some people, that can mean that the tissue sheds and bleeds as though you're getting a period elsewhere.
00:07:01
Speaker
But in these cases, the blood has nowhere else to go. My understanding is also that this tissue can react with the hormones in your body that generally occur when you're going through and having your menstrual cycle.
00:07:16
Speaker
So sometimes that tissue can grow inflamed in and around the time when you're at the peak of your cycle and then it can begin to shed or act differently when you're having your period.
00:07:28
Speaker
But again, because it's in places that it shouldn't be, it has a really different impact on your body than it would if it was in the uterus. I want to hand over to Aidan to discuss with you further and particularly go to the issue of treatment.
Challenges in Diagnosis and Validation of Symptoms
00:07:44
Speaker
But if I could just make one final observation, in doing a bit of research for our conversation today, what really came through again and again was pain, that pain is an important symptom and it can be quite severe and it can affect pain during, not just pain during periods, but pain during sex,
00:08:05
Speaker
pain when you're pooing, pain when you're weeing. It was just a pain story. And look forward to hearing about the treatment options that can take away that pain. But I'll hand over to you, Adrian.
00:08:17
Speaker
Milly, one of the first things that I was really excited to ask you about is, and I guess the reason i wanted to ask you this is because I'm in a difficult position as a doctor because all of healthcare has a sort of, we have a way of doing things.
00:08:34
Speaker
And we have to stick within the guidelines of the way of doing things. But also, unfortunately, a lot of the times we're bound by the culture of medicine. And there are certain things that we can say and certain things that we can't say.
00:08:49
Speaker
You are not bound by that. And so it's very exciting to speak to you.
00:08:55
Speaker
If you were going to see someone who has come into a doctor's office because they've got recurrent pelvic pain and it's particularly bad when they're having their period and they're noticing all these symptoms including things like irregularity of their periods ah sometimes pain during sex particularly are which has a relationship with different times their menstrual cycle they get issues with sometimes they've got diarrhea sometimes they've got constipation
00:09:26
Speaker
And they're a young woman there, perhaps between the ages of 17 and 35. And they've got a, an older female relative who's also had these similar issues.
00:09:38
Speaker
What's the message that you want to give to them? And they don't have a diagnosis yet. They're looking for answers.
00:09:45
Speaker
It might be endometriosis that straight up right there, that it might be endometriosis. What I wouldn't do is give them some Panadol, maybe birth control, tell them it's all in their head and come back in a year if it hasn't resolved, I'd want to validate what they're going through.
00:10:05
Speaker
And I noticed that message comes from probably what I expect is a deep place of personal experience, but also the shared experience I've heard of thousands of other women who have unfortunately received that same message from healthcare. And I just want to apologize. That's been the case for so many years.
00:10:23
Speaker
Is that still happening? Yes, disturbingly yes. In Australia today it happens almost every single day. It happens when a person is seeking a diagnosis. It happens when a person has an ultrasound or a diagnosis of endometriosis and nothing comes up.
00:10:45
Speaker
It happens once a person has had surgery. And even if endometriosis was found too often, that young person will have a surgery, they'll wake up and they'll be told, okay, we've removed the tissue. Here's a Panadol, here's some birth control, and we'll see you again 10 years for a repeat surgery.
00:11:03
Speaker
It's so unfortunate that this disease is continually taken, not seriously. It's not funded enough. It's not talked about, it's not resourced enough. And even when a person has that diagnosis, which can be so, so hard to get,
00:11:16
Speaker
they still have to fight to be believed, still have to fight to say, no, I still have symptoms. i have some inkling as to why we are not good. And I'll say that in in sort of the weakest way, but I'll actually make that stronger, why we are bad at diagnosing and managing it.
00:11:35
Speaker
And I want to acknowledge that a lot of clinicians have made this their passion and that they're actively trying to make this a lot better, but we are still so far from where we need to be. Why do you think it is that people are not getting the care that they need?
00:11:49
Speaker
I really think it comes back to the idea of endometriosis being a women's disease. It was historically associated with hysteria back before the term endometriosis was coined and diagnosed. Those women that would come forward and say, I experienced pain on my period, were called hysterical.
00:12:06
Speaker
And more often than not, just completely told, oh yeah, she's hysterical. She doesn't, you can't take her seriously. I think today when the same thing happens, a young person walks into the hospital, presents an emergency and the second they say, yeah, I get period pain, it's really bad, i can't stand up and I'm vomiting, please help me.
00:12:26
Speaker
Too often there's that element of hysteria that's put on that woman and just told, you know, you'll be Hundreds of millions of others go through this every single day. And I think unfortunately also we sometimes have medical professionals who have the same thing. They get periods and they say, well, you know, it's bad, but it's not that bad.
00:12:48
Speaker
It's a lack of empathy. It's a lack of understanding. And I do really think at the root of it, it stems from the idea that endometriosis is a women's disease. And it's interesting you point out the historical use of the word hysteria.
00:13:01
Speaker
I mean hysteros literally means the womb. And hysteria was initially wandering uterus, which is interesting to now reflect on the fact that you have tissue similar to endometrial tissue wandering around the body where it shouldn't be.
00:13:15
Speaker
And I thought that was just an interesting connection. But yeah, absolutely. You can look at 1800s medical records and women are literally diagnosed with hysteria and put on all sorts of sometimes fun. There's there's records of women being put on cocaine and opium, but also women getting the most horrendous, horrific barbarian medical treatments, not even medical treatments. They're frankly torture treatments so for this condition.
00:13:39
Speaker
And I think from a health professional standpoint, it's difficult whenever we are treating someone where there isn't a clear test for it. So when someone comes in with chest pain and they've got an ECG, which is showing a heart attack or a blood test, which is showing a heart attack, it's very easy for me to go, ah, here's a disease.
00:14:00
Speaker
I have to take this person seriously. They're saying they've got 10 out of 10 crushing chest pain. I can do something about that. And I have a positive confirmation of disease. Endometriosis is tricky. And I think what's tricky is we're in such a rapidly changing world at the moment that even the diagnostic guidelines are changing.
00:14:19
Speaker
And so those of us who went to medical school five years ago, 10 years 15 years ago, fifteen years ago the treatment and process for sort of investigation and management is changing.
00:14:30
Speaker
And so if we're even struggling to keep up, how are patients supposed to keep up with that? And that's why I think there's a real strength in what Millie's been able to do, which is to bring patients together. Millie, I wonder if you could speak to what the current sort of understanding is and the current expectations are of young women when they're seeking a diagnosis of endometriosis.
00:14:54
Speaker
So for those young people that come specifically to us, that is the Australian Endometriosis Foundation and looking for help with receiving a diagnosis, unfortunately, the first thing we do you say to them, and I say unfortunately, because it's a shame we have to say this, is bring someone in with you to your medical appointments who can advocate for you, because unfortunately, a lot of the time you're not going to get the answers that you deserve.
00:15:21
Speaker
at that first appointment and probably not with that first or even second doctor. We also have a lot of resources that we'll provide that young person with to help them know what things they should be saying in the medical appointment to be taken seriously.
00:15:38
Speaker
So rather than saying something along the lines of, I get bad periods, it's, I first started menstruating at the age of 13 and every period since then has been painful. Here is what the pain feels like. Here is what pain looks like for me.
00:15:52
Speaker
It's also accompanied with X, Y, Z symptoms. Oh, and I have family members who have experienced the same thing. And we do that because a young person that's never navigated the healthcare system before would have no idea that these are the things to be saying. And unfortunately, more often than not, the health professional doesn't ask the questions in that situation.
00:16:15
Speaker
But in providing those resources and telling that young person, bring someone in to advocate for you, because it can be really hard to advocate for yourself in a clinical healthcare care setting when you've never been there before.
00:16:27
Speaker
Hopefully that young person is able to get the referral to the specialist they need or the tests
Advice for Young Women Seeking Diagnosis
00:16:31
Speaker
and or surgery they need to get that diagnosis and then receive the further care. If I could come in, i'm very mindful again that we could have some younger listeners grappling you with these questions.
00:16:43
Speaker
symptoms and I really want to give them hope and not frighten people even though it does sound like a very challenging condition and I wondered just a very quick question and then I wanted to ask you about your own personal journey to diagnosis what liberation that diagnosis gave you but what sort of medical specialist deals with endometriosis if you are talking to your GP and seeking a referral who are you seeking a referral to? You're looking for a gynaecologist Specifically a gynecologist with what we call AGES training.
00:17:15
Speaker
So they've undergone further training in specialist surgery. And ideally someone who has experience with endometriosis. And there are really great online sites that can show you, that has a database of these particular specialists.
00:17:31
Speaker
But ultimately, when if you're walking into your doctor, what you want is a referral to a gynae. And when you say AGES, what we call AGES, is that an acronym? you just explain what that means? That is an acronym. So a gynecologist is someone who undergoes, I believe, it's four years specialised training.
00:17:48
Speaker
And then five, six, Aiden's pointing Yeah, yeah. it's almost ah It's probably close to a decade ah A lot of specialist training and then I don't know how, but some of them go on to do further training, self-specialty training.
00:18:03
Speaker
And further training that they can underdo is called AGES. ah just want to come to your personal story. What did you, when did you first think, my God, something's wrong?
00:18:14
Speaker
and how long did it take you to get your referral? If you're able just to give us that summary of your journey and what your mum and dad were doing to help you. Yeah, so my story is pretty stock standard, unfortunately. It's really the story of so many other young people who have endometriosis.
00:18:31
Speaker
I got my period at 13 years old and from the get-go it was bad. Bad enough that I remember having to take days off school, going to the school cubicles and lying down just because the pain was that bad.
00:18:44
Speaker
It would manifest as migraines, it would manifest as nausea, it would manifest as bloating. But the two things were, firstly, When I was that age, at school, we weren't talking about periods.
00:18:55
Speaker
I wasn't saying to my friends, hey, do you are your periods like this? I had no idea that my experience was profoundly different to that of my peers.
00:19:06
Speaker
Secondly, and unfortunately, again, something that we do see a lot is endometriosis is very genetic. So while I was going through all of this, my mom was there and she was going, it's okay. I went through the same thing. it gets easier as you get older.
00:19:23
Speaker
And as a result, I just thought to myself, okay, periods are just meant to be really bad. don't know how, maybe I'm just weak. This is crazy. Okay. i do remember at about 14, I went to see my GP and we mentioned the bad periods and he seriously said to me, some women just get bad periods. You just need to know take a few more Panadol, just drink some more water up and that will help flush it out. And i was like, okay,
00:19:48
Speaker
I just need to be tougher because none of my friends are going to their GPs and talking about their bad periods. I just need to toughen up. At around 16 17, I now look back on and reflect it was probably a burst cyst.
00:20:02
Speaker
And both times I went to hospital in extreme pain. And I just remember getting an ultrasound, an external ultrasound, and the doctor just saying, oh, well, you know, you're not pregnant.
00:20:15
Speaker
like you're not on your period. So, you know, you just, there's nothing we can do. And my dad, bless him, refused to let them discharge me until I had pain relief because I just kept blacking out from the pain, at least the first time.
00:20:29
Speaker
But again, i was sent home and there was absolutely nothing done. No mention of endometriosis, no mention of a period possibly being wrong, no mention of any kind of gynecological disorder.
00:20:40
Speaker
When I was 19, stomach extended my stomach extended really badly. It was really hard, really bloated. And I was walking around and I remember someone in the shop said to me, Oh my God, how far along are you And at 19, you're really self-conscious.
00:20:55
Speaker
And particularly if you're just in your pajamas at the grocery center. And I just went, Oh, this is so embarrassing. This is so bad. I just need to lose some weight. So I went to the doctor to ask about my weight.
00:21:06
Speaker
And this was a new doctor. My normal GP was actually off. And I went to her and I said, I'm really bloated. Someone asked me if I was pregnant. And she goes, you're actually really in proportion, but you are very bloated. Like, tell me what's going on there. And I told her and I kind of said, oh, you know, it gets really bad around my periods. And she said, tell me more about that.
00:21:26
Speaker
So I said a bit more and she said, has anyone ever told you about endometriosis? I said, is that cancer? What is that? And she said, but I'm going to send you in for an internal ultrasound and I'm going to refer you to a gynecologist.
00:21:42
Speaker
So I had the internal ultrasound and didn't show anything because more often than not, it can't see endometriosis, but it did see a cyst. And because of that cyst, I was able to get operated on very quickly.
00:21:54
Speaker
And during that surgery, basically they just found endometriosis everywhere. And when I woke up, the specialist said to me, oh yeah, the cyst wasn't a problem. and compare it Comparatively, it was nothing. it was just a cyst hanging out.
00:22:05
Speaker
You have endometriosis. and I'm hanging hospital bed, drugged up, and I'm just going, what is this word? What does this mean? Aidan, I'm going to come to you in a moment for your reflections on this story, but I just want to stay with the story because there's one thing I've learned someone who's also had a serious illness, this enormous power in just the, not just, but in the patient's story, the liturgy of it.
00:22:30
Speaker
Can I just ask you, what impact on your life and treatment did that diagnosis bring? The diagnosis on my life brought a lot of validation.
00:22:43
Speaker
And it's something that as I get older, I reflect on more and more on how much I didn't believe in myself and I didn't trust myself. And I still see that today sometimes when I get a headache and I go, oh, it's not that bad. And I'm like, no, actually it is a migraine. Why am I dis dismissing myself? And I reflect and I go, because for 10 years I was experiencing horrific pain and horrific symptoms and very trained experts were telling me that it wasn't real.
00:23:09
Speaker
So that diagnosis definitely instilled a lot of confidence in me and the ability to believe in myself a lot more. In terms of what it the diagnosis had on the treatment, well, that's kind of the next issue that then occurred because unfortunately after the diagnosis, I was told, okay, we'll come back in six years.
00:23:30
Speaker
um You'll be symptom free up until then. And that just wasn't the case. And it's not the case. Endometriosis is chronic. We know it's chronic. But unfortunately, not enough medical professionals know to refer someone on to multidisciplinary specialists after the diagnosis is made.
00:23:49
Speaker
So just in a nutshell, who are the multidisciplinary specialists that many women diagnosed with endometriosis need to have in their lives?
Multidisciplinary Management of Endometriosis
00:24:00
Speaker
So in your endometriosis toolkit, which is something i talk about a lot, you should have a pain specialist, particularly if pain is the biggest symptom impacting your life.
00:24:11
Speaker
And then it comes to allied health professionals, and this will really differ for every person and should be tailored depending on your symptoms. But it can be something like an exercise physiologist, a dietician, a pain psychologist, someone who does acupuncture, a felt pelvic physiotherapist.
00:24:27
Speaker
It's really varied and it depends firstly on your symptoms and also what you can afford. I look forward to talking about your advocacy in a moment, but I want to hand back to you, Aidan, in terms of all any aspect of the clinical care and the treatment options. We've had ah some insight into the surgery, but even understanding a little bit more what that surgery is about. but Thanks so much for what you're telling us so far, Millie. It's a very moving story. so There's a quick quote I'll share with you by an American writer called Willa Cather,
00:24:58
Speaker
And she says there are only two or three human stories, but they go on repeating themselves as savagely as if they've never happened before. And I think that applies to the getting the diagnosis for certain conditions. its We all go on this individual journey that's like an odyssey.
00:25:17
Speaker
But thanks, Aidan, you go. Thank you so much, Millie. I guess I was so happy at the point of the story where you told me about a GP who heard your symptoms and said, have you thought about endometriosis?
00:25:31
Speaker
Because increasingly I want to celebrate how wonderful some GPs, an increasing number of GPs are out there at being the first to say to someone, hey, this could be endometriosis and being pivotal in in the care that young people with endometriosis receive because they are sort of the the specialist who sits at the center of the care team and coordinates the lifelong care of a person.
00:25:55
Speaker
the just briefly AGES is the Australian gynecological endoscopic society surgical society so essentially what it means is you've got OBGYN so obstetricians gynecologists obstetrics deals with pregnancy and gynecology deals with the uterus and the relevant anatomy of the female body and Gynecologists who then do extra training in endoscopy, endo means inside and ah scope literally means to to look with a camera.
00:26:27
Speaker
And so it's essentially what would quote unquote keyhole surgery using cameras and small instruments instead of doing big cuts and opening a person up during surgery.
00:26:38
Speaker
And ages or endoscopic surgery and gynecology allows someone to use cameras to go in and in the process make a diagnosis because they've seen tissue similar to endometrial tissue or rather endometriosis type tissue on organs inside the abdominal cavity and or the pelvic cavity.
00:26:58
Speaker
And then in some cases, the treatment is to cut away that tissue and resect it. And. So the reason this is important is because ultrasound is often a first line investigation that people will get.
00:27:12
Speaker
And in medicine, we talk about tests which rule in and tests which rule out. An ultrasound is one of those tests that rules a diagnosis in, which is to say, if I get an ultrasound and it shows endometriosis, I can make a diagnosis of endometriosis.
00:27:27
Speaker
If I get an ultrasound which doesn't show endometriosis, I can't say that there isn't endometriosis. It's a rule in test, but not a rule out test. I love that. I love that language.
00:27:40
Speaker
And so if the test is negative, but there is a high index of suspicion for endometriosis, the next step is to get endoscopic diagnosis and to refer to an obstetrician gynecologist who's able to facilitate that.
00:27:56
Speaker
Can you just quickly explain what is an ultrasound? And again, that's in a nutshell, the endoscopic. These are all words people don't know. So an ultrasound is when we use a probe, which has crystals in it to shoot sound waves into the body. They bounce back. We receive them in the probe and we're able to take pictures of soft tissue, not bones, but organs.
00:28:16
Speaker
There's two kinds of ultrasounds. One is an internal ultrasound where we use a long thin ultrasound device inside the vagina to look at organs inside the pelvis so the cervix the ovaries and another one is an external or trans abdominal ultrasound where we use a sort of what you might be familiar with from pregnancy on episodes on tv shows an ultrasound to scan through the tummy looking at organs inside the abdomen and ultrasound can be used on a number of things around the body we can use it on hearts and lungs and eyes but in this case in this context we're talking about two basic
00:28:51
Speaker
sort of ultrasounds, an inside one and an outside one. And that is looking for things like the thickness of endometrial tissue, the blood flow inside tissue. We're looking at things like the blood flow around organs, which might signify inflammation.
00:29:06
Speaker
Those are sort of what expert sonographers and radiologists are looking at. Then when we come to endoscopy, it's about putting essentially a camera on a stick. And when I say camera on a stick, it's not a GoPro.
00:29:19
Speaker
It's a very thin metal tube, which has a light source and a camera at the end, which is able to go inside the abdominal cavity. And generally what we do is we create a small port or ah a small hole, which goes from the outside to the inside of your tummy.
00:29:34
Speaker
of your abdomen and we pump some CO2 gas into the abdomen. So it enlarges a bit and expands a bit, which is why people feel very bloated after these surgeries. It creates a bit of space for us to have a look.
00:29:45
Speaker
And then we pop the camera in and we have a look at the organs inside that cavity. So in this case, the pelvis of the abdomen, you can do it for the chest as well. It depends which cavity you're looking at. And that endoscopy allows a surgeon to see the organs, to see around the organs. It also allows them to bring in a knife and fork essentially and and do some cutting or resecting or stitching, whatever they need to do.
00:30:08
Speaker
I think I was so happy to see Millie talk about the multidisciplinary team. And I cannot emphasize enough to people how valuable it is to have that team in your toolbox.
00:30:19
Speaker
I love the idea of endometriosis. Is it toolkit or toolbox that you mentioned? Toolbox. Toolbox. I love that. And I do want to acknowledge how valuable it is to have people like pain psychologists, physiotherapists, pelvic floor physiotherapists, occupational therapists to help with daily tasks, exercise physiologists.
00:30:39
Speaker
It's important to appreciate as well as that there is a spectrum of disease. Not everyone with endometriosis has severe disease. Some people are very fortunate and it's mild and other people have very severe debilitating disease. And so depending on how bad someone's endometriosis is,
00:30:53
Speaker
will depend on how many people they need to get involved. If your endometriosis is not too bad, and I say that with caution, all endometriosis sucks. Some does not suck as much as others. People have a very different experience of endometriosis because again, everyone's body is different and everyone's nerves are wired slightly differently.
00:31:11
Speaker
So it's not even to do with how much endometriosis tissue we find. It's about how bad is your experience of endometriosis. There's a very poor correlation between how bad the to deposits of endometriosis tissue are inside the body and how bad someone's day-to-day experience is, which means we might see just a bit of endometriosis tissue inside the pelvic cavity, but they might have debilitating pain, whereas another person might have huge amounts of endometriosis tissue around their abdominal organs, but they really only get a few days of really bad pain around their period.
00:31:45
Speaker
And they're able to function fairly well the rest of the time. So depending on how bad your symptoms are will depend on whether you need to include a pain specialist in your team, which is someone you need a referral to will depend on whether you need recurring endoscopic surgery will depend on whether you need a host of other people in your camp.
00:32:06
Speaker
One other big challenge is fertility potentially. Again, I might go to Millie first and then to Aidan and then let's move on to advocacy and the work you're doing there. But what's the issue with fertility?
Impact on Fertility and Advocacy Journey
00:32:19
Speaker
Fertility and endometriosis have a strong correlation. We don't know exactly why. There's a lot of theories out there. But if you have endometriosis, you are more likely to struggle to conceive.
00:32:31
Speaker
um So one, an additional person in your toolbox might be a fertility specialist. Now this is something that if you catch it early, is more likely to be able to be managed. Speaking from personal experience, at 22 I found out that endometriosis was affecting my fertility and I was lucky enough to be able to go for fertility preservation treatment, which involves freezing your eggs or embryos if you have a partner.
00:32:59
Speaker
For some though, unfortunately they might not have been advised that endometriosis will affect their fertility or once they realize is too late. And so that can mean potentially they have a diminished ovarian reserve. That is, there's not enough eggs in there or a viable pregnancy.
00:33:17
Speaker
It might mean that the endometriosis has actually destroyed the internal anatomy to an extent that you're unable to fall pregnant and or carry a child.
00:33:27
Speaker
It might also mean that you're unable to safely carry a child and deliver it without extreme risks. Now, again, this happens to some people with endometriosis, but not all of them. In fact, if you do have endo, you're more likely to be able to conceive than not.
00:33:46
Speaker
But it is something that's really important to be aware of, particularly if you're young, because you've got more of a chance of being able to get on top of it now. than in 10 years' time when you are starting to look at potentially starting a family.
00:34:02
Speaker
Is there anything you'd like to say more, Aidan, about the fertility issue? It's a complex topic and made more complex by the fact that this is something which almost always has to occur privately. It's very difficult to facilitate in a public health system.
00:34:18
Speaker
There is... a good reason for levels of worry and anxiety around this because we're talking about someone's future and how they're going to live their life in 20 30 40 years whether they're able to have kids or not the message of hope is that it doesn't affect a lot of people the unfortunate message is that it does affect enough people that it's a big problem The fertility issues are many, but ultimately what we're talking about is the process of inflammation and then the sort of rolling back of inflammation. You can all almost imagine it as a tidal wave that occurs in sync with people's hormonal fluctuations of inflammation of tissue, recession of that tissue, inflammation, recession causes scarring.
00:35:04
Speaker
And ultimately when that happens in a lot of places, that scarring causes structural damage. And that's something that we've not paid enough attention to until more recently, how damaging that scarring is.
00:35:16
Speaker
For years we've known that uncontrolled chlamydia or gonorrhea can cause pelvic inflammatory disease, which causes scarring inside the the tubes, which go from your ovaries to your uterus.
00:35:28
Speaker
And that can cause real issues with fertility. It can cause things like ectopic pregnancies. It can cause horrible ruptures. But only more recently have we recognized how debilitating that scarring can be and destructive it can be to a whole host of systems within the body.
00:35:45
Speaker
So if you're worried about fertility, your first point of call is to speak to your GP about it. um and get more information and discuss actual risks because there's a whole host of different risks and everyone's at a different level of risk.
00:36:03
Speaker
Again, because endometriosis is not a single disease that affects different people in different ways. And everyone comes to the table with their own health risks and health strengths. And so it's so situational and independent and individual.
00:36:18
Speaker
let's turn to that critical phrase that Aidan just mentioned, which was getting more information. Because Millie, you're the CEO of the Australian Endometriosis Foundation.
00:36:30
Speaker
And I think that's just one of your activities to get the information out to women, particularly young women, so they can ask their GP the right questions and then get the help they need.
00:36:42
Speaker
Where did the journey of advocacy and the provision of public information begin for you and give us an overview summary of what you are making available to women so that they can learn more about it and we'll of course put information in our notes podcast notes so that people can follow up your foundation so where did it start and what are you doing so for me it starts so I mentioned before I got that diagnosis i woke up and I was told all right see you in six years And within six months of that surgery, my symptoms came back. And in some ways they were worse.
00:37:15
Speaker
hot And the reason they were worse was because I'd lived six months without them. And my whole life i had I'd been living with those symptoms. So I'd normalised them. I knew pain, migraines, bloating, whatever.
00:37:26
Speaker
But to then live six months without that and then to have it come back, oh my goodness. I was like, wait, life could be better. but why don't we have to be living like this. What is going on? I went back to my specialist and she said to me, look, there's nothing we can do. I'm not going to operate on you again. you just have to toughen it out. There's no way your symptoms could come back this soon.
00:37:46
Speaker
So I began to doubt myself again. And I went back to that of, I just need to be tougher. My symptoms aren't real. This, I just, it's all in my head. i enrolled myself in a clinical trial to try and manage the symptoms, which was tough because i was 22 and I didn't really know what I was doing.
00:38:04
Speaker
and Along the way of that clinical trial, i did find out that my endometriosis had really affected my fertility to the extent that I could go into menopause in the next few years.
00:38:16
Speaker
And a doctor looked at me and said, if you want kids, you need to freeze your eggs now. And I was like, oh my God, I'm 22. I don't even know what i want to do next week. i don't know if I want kids. Like this is huge.
00:38:28
Speaker
But, and I couldn't talk to anyone about it. I didn't have any friends that were going through the same thing. I didn't have any friends that had endometriosis and I didn't have any friends that had any thoughts about fertility, let alone fertility preservation.
00:38:41
Speaker
So i began the process of freezing my eggs and along the way, realized how lonely it was. it didn't help that it was COVID. And during that time, during the cycles of treatment, I wasn't able to see anyone because they didn't know the impact of egg freezing and COVID.
00:38:57
Speaker
So I couldn't see anyone. was incredibly lonely. And I thought to myself, endometriosis affects at least one in nine. Why am I so alone? Why is there no one out there like me that I'm able to talk to?
00:39:09
Speaker
So I started an Instagram account, basically where I was just sharing what I was going through, sharing my story, sharing me, injecting myself with hormones, my journey with endometriosis. And it was incredible literally over a week i had a thousand followers all of them young people in Australia who lived with endometriosis all of them messaging me sharing their stories thank you for being so open this is exactly what I grew through it's so good to know that I'm not alone and I was just like oh my gosh there's so many of us out here why am I the one that's created this platform like why hasn't this been done sooner
00:39:47
Speaker
When I finished my fertility treatment, I hosted a picnic and I basically posted it on that Instagram and said, come along, I'd love to meet you. Let's all meet, action let's take this offline and meet in person.
00:40:00
Speaker
And i hosted a group of girls at my house and it was amazing. For two hours, we laughed, we cried, we shared tips and all of us thought to ourselves, why are there no other spaces for us to do this? This is incredible. where This is so empowering, fulfilling. And you walk out having all these tips and tricks on how to better manage your disease.
00:40:19
Speaker
And so shortly after I hosted a few more of those events, just trying to get more and more people along. And then brands started reaching out to me and they'd say, we've seen what you're doing on Instagram.
00:40:30
Speaker
We'd love to donate. What's your charity number? And I was like, oh, I'm an individual. There's no charity here. I'm just bringing people together.
00:40:41
Speaker
And they said, oh, okay, let us know if that changes. And I went home and thought, maybe that should change. So have a pro bono law firm to help me and we turned the Instagram page into this charity.
00:40:53
Speaker
So this was in 2023, July 2023. It became a charity and almost instantly the exposure doubled. Media was a lot more willing to report on what we were doing because we were established.
00:41:05
Speaker
Brands were donating goods and money. people were donating time and money and young people just were saying, we want more events, we want more events. At the start of last year, the charity had grown to the point where we had, i think it was thousand registered members across Australia who were engaged with the program that we were doing. And so I decided we needed to really formalize up what we were doing and come up with a bit more of a plan rather than just these informal catch ups, something that we can roll out every year.
00:41:40
Speaker
And that's what we worked on and that's what we now do. So today we have 1600 young people across Australia registered with our services and we engage, I think 10,500 digitally accessing our digital resources and support.
00:41:56
Speaker
But across Australia, we have our care packs firstly, which are free bundles provided to young people in hospital. And it gives them this care and comfort from when they wake up from surgery.
00:42:09
Speaker
And then they also, there's a pamphlet in there that connects them to our services. So from the minute that they're diagnosed, they know firstly that they're not alone, but secondly, that there's a community of others that they can connect with.
00:42:20
Speaker
We also have fertility preservation seminars, again, completely free, which are run across Australia. And we encourage young people to come and to bring their support to people So maybe it's a loved one, maybe it's a parent and you get two hours of just Q&A with a specialist and then Q&A with a young person who's undergone fertility preservation. And so basically it just gives this young person the opportunity to ask all these questions in a judgment-free zone while building connection with others who are in the exact same spot as them.
00:42:49
Speaker
And it also has the added benefit of partners and support people being able to connect with one another because too often we find support people also aren't provided with any comfort, any resources or any idea on how to support the person with endometriosis.
00:43:03
Speaker
Outside of that, we've also got coffee catch-ups. So we run those every other month in every state and territory in Australia, which is a peer-led intervention support program where we have a young person that sits there and brings with other eight other young people and just they spend two hours chatting about endometriosis.
00:43:21
Speaker
Look Millie this is just the most fantastic example of patient initiated advocacy in partnership with clinicians to provide ah fantastic information I would say because I've been on your website too you have a very impressive board of people with appropriate financial and ah legal expertise.
00:43:42
Speaker
Can I just cut quickly to this issue of equity of access? Because you're obviously working nationally now, which is amazing. people in rural and remote areas, people from multicultural backgrounds, and of course First Nations people, this people who are perhaps on the other side of what's often called the digital divide too, that may not have as much access digitally. I'm not saying it's your responsibility, but what are your thoughts there about extending and out to reach those even more vulnerable groups? I think that's an excellent point. I think sometimes it's really just stressing that people in those areas
00:44:18
Speaker
don't have access to the care that they deserve as well. We do have a few ambassadors in regional and rural areas across Australia, but there's so much space for more to be done, both in terms of connection and building that community, but also in terms of the healthcare and the access to healthcare in those areas. Like we've too many of our young people say, oh, I'm in Sydney for the week because I'm having to sit at a hotel and my parents are lying down because we just don't have a surgeon in Darwin, for example.
00:44:51
Speaker
That's really stressful and that's an additional stress and cost that a young person has to go through. I think that's definitely something that should be a priority for those who have the funds to build access to healthcare out in those areas.
00:45:04
Speaker
And I just want to jump in there and it's so important that people like Millie are speaking up about endometriosis and she's really ridden the wave in terms of public awareness of this, because thankfully there's now national action plan for endometriosis from the government, which recognizes that things like public awareness, patient understanding of the condition, access to treatment options, research programs into endometriosis and pelvic pain,
00:45:29
Speaker
are significant priorities and that it's not just about educating health professionals, but also making people in the broader community aware of this disease and the significant requirements that we need to meet the basic level of care needed.
00:45:44
Speaker
And so it's nice to know that this is starting to take front and center stage, that health professionals are really starting to get on board with improving the access to diagnosis and ongoing care of endometriosis in a way that we weren't 10 years ago.
00:45:59
Speaker
And so if you're interested, the National Department of Health and Aged Care now has a National Endometriosis Action Plan, which is hopefully going to start to filter down and have impacts where when a patient's sitting in front of a healthcare professional, they're starting to feel that difference.
00:46:16
Speaker
Before we deal with research priorities, I might give that to you, Aidan. I just want to ask one quick thing about taboo. You know, earlier on in this conversation, we were talking about the origin of words like women being associated with hysteria, even this idea of the womb moving around the body, which of course is nonsense, but it was like a metaphor prior to scientific health care.
00:46:39
Speaker
As I said, I'm 70. And I can tell you, when I first started having my periods in the 60s, nobody was talking about it was a total taboo I was even embarrassed to talk to my mum about it and she would have been quite helpful if I'd asked but it it was sort of shameful and I'm just wondering where are we up to in the taboo of talking about women's processes at menstruation And do you think it's any better for teenagers now? Would they be more likely to be able to share stories with each other about what their menstruation's like? Because in your story, you're in your loneliness was such a key element to your story. So where are we up to with the taboo of talking?
00:47:23
Speaker
I think it's getting better. ah do. I'm not a teenager and I'm not at school today, right? So it's hard for me to say, oh, this is what's happening in the playground. But... I do believe that there are more conversations around periods, menstruation and endometriosis happening. We see it a lot more in the media.
00:47:43
Speaker
And i do think that people are talking about it more. Of course, there's still taboo. There's going to be taboo for quite a while. And I'm not sure any amount of conversation will ever be able to completely remove that.
00:47:56
Speaker
But I do think it's getting better. And Ada, do you think younger doctors, I mean, you're a yeah junior doctor now, up male and female, are less likely to have prejudicial attitudes towards women's storytelling and more likely to believe them that something really freaky is going on here. It's more than just normal period pain.
00:48:20
Speaker
I'm not sure that the difference is necessarily about whether you're a younger or older doctor. I think so much of the culture of medicine is about have you had good mentors who've made you curious about patient stories?
00:48:34
Speaker
And I think increasingly there's a trend towards humility in medicine, the idea that we might not know everything, shocking surprise, and a curiosity to say my patient is reporting significant symptoms, pain which is disproportionate to what I'm seeing as evidence in front of me.
00:48:57
Speaker
Have I missed something or is there perhaps an alternative explanation for what's going on? And that's an increasing trend in the culture of medicine is a curiosity and a humility to say,
00:49:10
Speaker
Could there be something else going on? And I'm glad to see it. And I'm glad that the leaders within medicine, particularly in Australia, are pushing for this because it's needed. And it's needed for diseases like endometriosis and 101 other diseases similar to endometriosis, which can be invisible diseases at first. And because they're not obvious, it's very obvious when someone comes in with a broken bone, why they're in so much pain, but it's hard to diagnose.
00:49:38
Speaker
it's becoming easier, but it's still harder to diagnose. So I'm not sure that it's about whether you're a younger or older doctor. I think it's probably, it's a combination of things.
00:49:50
Speaker
The other thing is from a doctor's perspective, I find it really challenging when a patient comes in and I have an interaction with them and they've had multiple negative experiences with healthcare and they start off on the attack.
00:50:08
Speaker
I, you know, all these other doctors have mistreated me and I need this test and they start off and you have to give me this test. And this is all the reasons I need this test. And I don't blame people for having that experience. Cause I get it.
00:50:22
Speaker
I guess what I would ask, and it's not necessarily fair of me to ask this of you, because if you're someone who's listening, who's had multiple negative interactions with healthcare, I'm sorry. And you shouldn't have had that. You shouldn't have had to go through that.
00:50:36
Speaker
But what I would suggest is that if you're trying to get the most out of the healthcare professional in front of you, try and give them a clean slate and try and afford them the opportunity to prove to you that they can be someone who listens to you.
00:50:51
Speaker
And if they aren't, then I'm so sorry that's happened. But the best relationships happen when ah patient and a doctor come together to work on a problem with an open mind. so I want to give you a chance to respond to that, Millie, and then I want to ask one more quick thing before we finish on
Patient-Doctor Communication and Research Call
00:51:09
Speaker
research. But what do you say to Aidan about that plea to give the benefit of the doubt and be gentle with the new doctor?
00:51:17
Speaker
I think it's a fair comment. I think Aidan's also acknowledged the nuances that, you know, that young person that's presenting in front of the doctor might have done so five times already and is now at a point where they're at their wit's end.
00:51:30
Speaker
If you do have the capacity to sit there and go through your symptoms again and respect that this is another human being in front of you who wants to hopefully help you do it.
00:51:46
Speaker
But if you don't have the capacity, it's not your fault. You're someone in a system and you haven't been treated right and we get it. We get it that you're tired. We get it that you're frustrated. We get it that you're in pain and you just want to believe be believed.
00:52:00
Speaker
Yeah, I agree with Aidan's point and I agree with the nuances in this situation. I just want to acknowledge too that I've talked about men and women all the way through this and I've noticed you, Millie, you've been much more careful to say people.
00:52:13
Speaker
and and i And my understanding is we need to acknowledge, and I have friends in this situation, who present ah either ambiguously or they present as men, but in fact they still have a women's perspective physical body, a woman's physical body. And so it's another challenge in the healthcare sector for the the respect of the trans person.
00:52:35
Speaker
But look we only have a few minutes left. In a nutshell, two or three areas where you want to see more research. I'll just bang in, Aidan, if I may, because we literally have only a few moments left. What do you want to see, Millie, as research priorities?
00:52:47
Speaker
I think a research priority, there's a lot, but patients need to be front and centre. Whatever research is being led, whatever We're putting our money towards we need to be involving patients and we need to be asking them what their priorities are, why and how they want to see it happen.
00:53:02
Speaker
That's not happening. Medical researchers are a lot of the time taking it on themselves to figure out what's going on with endometriosis or find different cures, treatments, et cetera. Great. But if you're not involving the patients, you're not going to get the response that you want.
00:53:15
Speaker
Yeah, co-design, they often call that, don't they? Aidan, you mentioned earlier that there's the protocols are changing, that it's an area where there's change in terms of the guidance that young doctors like yourself are given. Do you have any reflections on research priorities that you are interested in?
00:53:33
Speaker
I completely agree with where Millie's coming from. There's a saying in the UK, nothing about me without me. as how we approach research and that has to be the case and certainly where more and more there are strict guidances about patient involvement in research production.
00:53:48
Speaker
The three key areas are chronic pain and understanding research into how pain signals are carried and why certain pain signals are promoted. That's the first thing. The second thing is basic cell research. It's not exciting yet. It's not going to deliver us a drug in the next year or two, but basic science is to understand on a physiologic and biologic basis why this is happening and what we can do about it, why endometriosis occurs.
00:54:16
Speaker
And then we need further research about treatment. What works better? What doesn't work as well? What can we do to improve people's quality of life and reduce their days with severe symptoms?
00:54:27
Speaker
And Millie, for someone, a young woman particularly, listened to all of us, all of this podcast, what's your final message to them before we we bid farewell? I really just would reiterate what I said at the start.
00:54:39
Speaker
Your pain is real. You deserve to be believed. And you don't have to go through this alone. You don't deserve to go through it alone and you don't have to. I just want to say not only thank you to Millie Weaver, the CEO of the Australian Endometrius Foundation, fantastic advocate, but but I also just want to say, Hayden, this is exactly why we're doing this podcast, to bring evidence-based information into the social media world so that people...
00:55:07
Speaker
who are directly affected by this, either through experiencing endometriosis or concerned that they may have it, or their family and friends can access high quality information. And it just feels really worthwhile.
00:55:19
Speaker
And I just want to say farewell from Julie. and do you want to say goodbye, Aidan? Just want to say thank you so much for tuning in again. Thank you, Mila, for your time. This is This Might Sting, diagnosing nonsense and prescribing the truth. Thank you so much for tuning in. Make sure to like and subscribe and we'll see you next time.
00:55:35
Speaker
by This Might Sting is hosted by Aidan Barron and Julie McCrossin. Executive produced by Joshua Kirsch. While we always work to give you the best information and tips, nothing in This Might Sting should be construed as personal healthcare advice.
00:55:51
Speaker
You should always make health decisions in consultation with your general practitioner and specialists. If you'd like to hear us talk about a topic on the show, or if you think we've made a mistake and want to request a correction, please contact us at questions at thismightsting.com.au.