We've learned in the last ten years how endometriosis is a whole body disease and how we can think about it differently.
So this is where I'm coming from.
And I think we should talk through, you know, what we know, what we don't know, where we might go in the future because that's what people really want to know.
Today's episode is one I've wanted to do for a long time, and this is for those of you who are struggling with painful periods, chronic pelvic pain, or you have been told that everything looks normal when you know something isn't right.
This one is for you.
We're talking all about endometriosis.
Endometriosis is a condition that affects an estimated one in ten women, yet it's still so misunderstood, underdiagnosed, and often dismissed in conventional medical care.
I know so many of you have felt gaslit or confused or just exhausted from trying to get answers and trying to find just how to feel better.
I have such a great guest to lead this conversation with us.
Her name is professor Philippa Saunders, and she is an internationally recognized researcher and co director of the EXPECT Centre at the University of Edinburgh in Scotland.
She has been at the forefront of research into endometriosis and has been such a powerhouse in leading the charge for researching women's health and has such an intense compassion for women who are struggling with this and a desire to help them feel better.
She puts this into her research to look at innovative treatment strategies and integrative approaches.
She brings both deep expertise and real hope to our conversation.
We are going to discuss today what we do and don't yet know about the causes of endometriosis, why that diagnosis is so tricky and very frequently delayed, and what might be coming in the future to improve that, and also the importance of a multidisciplinary approach to care to really help women get their lives back.
Philippa and I both agree that the amount of suffering that women go through with endometriosis is frankly unacceptable, and we've got to do better.
We are talking about treatment strategies and nutrition and other things that we can do to layer on as a treatment so hopefully you can feel better.
Whether you've been diagnosed or you're just starting to wonder if endometriosis could be part of your story or the story of someone you love, then I hope this conversation leaves you feeling seen, validated, and most of all empowered and educated and knowing what steps to take next.
If you have painful periods to the point that it's impairing your normal activities, that is not normal.
And it doesn't matter if it's endo, adenal, painful periods, or whatever it is, it shouldn't be normalized and you should get appropriate care.
Well, thank you for coming today, doctor Saunders.
Philippa, it's so nice to meet you, and I am so looking forward to this conversation.
We were just speaking before we started, recording the episode, and we're talking about endometriosis, and so much of endometriosis is misunderstood or not fully communicated with patients and with medical teams in general.
So I'm really looking forward to diving in and seeing what you can help us understand from the biomedical model, from the research model, and and also give us some idea of things that we could do to improve outcomes for patients.
So thank you.
Thank you so much for your time.
Well, it's it's a great pleasure to be here, and and it's, of course, something I'm very motivated to do is to talk always at every possible opportunity about endometriosis because I feel deeply, passionately angry about the way that patients have really been let down by lack of available therapies, But also, certainly, in a in a UK context and in a lot of other countries, the delay in diagnosis leaves individuals suffering in often eight years, nine years without actually knowing what there's is wrong with them that that then they can get appropriate therapy or do other, different approaches.
So to me, we have this huge unmet need.
We have a lot of people who've been badly let down by our medical systems.
So that's, you know, been a motivation for me for more than twelve years now to try and address this devastating disease.
And as a woman, I and we are so grateful to you for dedicating your career and your time to this work that is sometimes not very rewarding in in professional settings.
You know, I think that women's health care and women's health research is often it's not the pinnacle type research.
Right?
It's not the type of research that a lot of people laud as you are the best researcher in the world.
So, we appreciate that.
I wanna dig into everything that you just said.
Will you start by just telling us a little bit about what you do in your career and where your studies are?
You're coming to us from Edinburgh, so we're on different time zones here, and so I'm I'm I appreciate that.
Tell us a little bit about your own journey to become so passionate about endometriosis and women's health and the research aspect behind it, and tell us a little bit about what you started saying about sort of the anger behind it of where women are being let down.
Yeah.
Sure.
So, my my I actually my first, degree was in microbiology, the study of bacteria.
And and we'll touch again on bacteria a bit later in this podcast, I think, because we're starting to see that we should understand them better, particularly within our gut.
Then I kind of switched and became really interested in the reproductive system.
I started out working in agriculture, in pig reproduction.
I actually did a postdoctoral fellowship in The United States in in Florida, and then I went back to The UK.
But since you know, for many years now, I've been based in Edinburgh.
And Edinburgh's a a great center for biomedical research, particularly for reproductive research.
So for me as a scientist, the greatest thing I've been able to do is work really closely with clinical colleagues, the people who are on the front line treating the patients.
Yeah.
And it was in that context about, about thirteen or fourteen years ago, I, started talking to a colleague, professor Andrew Horne, and he ran a clinic for pelvic pain.
So this was people who were coming to him with chronic pelvic pain, you know, which was devastating their lives.
Yeah.
And one of the causes of chronic pelvic pain was endometriosis.
So this brought home to me that there was this terrible disorder, and I'd been a reproductive biologist for my entire career, and I hadn't heard of it.
Now if I hadn't heard of it, what we know is a lot of other people hadn't heard of it either.
So through through the clinical colleagues, I met a lot of the patients.
I listened to their their journeys, their stories, and I realized we were in a really bad place scientifically.
We did not understand what was causing this devastating disease, and that's what's motivated me for the last twelve years.
So what I, as a scientist, have been trying to do is understand what causes endometriosis, what makes the body react to endometriosis such that you get the symptoms, which I can talk through, and then again, what we could do to stand back from all these symptoms and say what links them together, what might be able way we could intervene such that ultimately, the individuals they might not be cured, but they'd have a good quality of life.
They could have a baby.
They wouldn't have chronic pain.
They could live their lives and go to work, go to training, go to whatever they wanted to do, and not have everything centered around this disease.
Now for some individuals, it's extremely severe, and they really do need, you know, surgery and other big interventions.
But for some, they can manage their symptoms with some other interventions.
And it's been striking to me how we've we've learned in the last ten years how endometriosis is a whole body disease and how we can think about it differently.
So this is where I'm coming from.
And I think we should talk through, you know, what we know, what we don't know, where we might go in the future because that's what people really want to know.
I love that exactly.
Before we dive into that, one of the questions that I get the most from patients is they're they're somewhere deep into this journey is they're just asking why?
Why don't doctors know how to treat this?
Why is it taking nine years to reach a diagnosis?
Why isn't there more data?
Can you give us I don't wanna dwell on this because this could be a long conversation when you just talk about health research in women.
But can you just give us an insight of that climate of why is there you know, this is the year 2025.
This disease is not a new disease.
Why is there still this big black hole of missing information around it?
Can you give us an idea of that, the climate of the research, and why we are where we are?
Yeah.
So I think it's worth, stepping back and thinking, let's take an individual who maybe she starts her periods, and they are very, very painful.
Right?
But but, you know, everyone says, well, every girl has painful periods.
You've just gotta suck it up.
Women, pain.
You know?
It's just one of those things.
Because we normalize pain in women, you know, we have babies and it hurts, we have menstrual cycles and it hurts, Somehow along the way, it's been certainly expected that that we shouldn't take it as seriously maybe as we should.
So we take a young young person.
They they go to their doctor, and they say, I've got these terrible painful periods.
I am passing out every month.
I've got heavy bleeding.
And the doctor says, okay.
Well, you'll probably grow out of it.
It's just because you're starting your periods, and I'm sure a lot of women will identify with that.
Periods are meant to be painful.
It's all natural.
And then for a significant proportion of people, they'll say, well, painful periods, start taking the contraceptive pill.
That'll sort you out because it'll dial everything down, and you won't be having, like, normal menstrual cycles.
It'll bring everything under control.
And for some people, that actually does work quite well.
So that that might that might work for a little bit.
Okay.
We haven't got a diagnosis of endometriosis.
We've just got these painful periods, and everybody's slightly told you to get on with it.
Now then maybe that person gets older, and they get to their twenties, and they decide they want to have a family, and, they stop taking their contraceptive pill, or they don't wanna take hormones.
You know, a lot of young people don't wanna take hormones these days.
When I was young, we all thought it was the greatest thing since sliced bread.
You know, it was like, wow.
Contraception.
Super.
But nowadays, I meet a lot of people and they don't want to take hormones.
So let's take our, our young woman and she she comes to, wants to have a baby.
She stops taking a contraceptive pill.
Now the periods are terrible.
She's in loads of pain.
You know, she's having trouble with pain, actually urinating.
She's having pain if she has sex.
She's not getting pregnant.
And, you know, at this stage, we should we should have a really big red flag going up.
There's something bad going on.
And quite often, this will be the time when maybe somebody will start taking it a bit more seriously.
And if she's lucky, she will go, maybe for a scan or for someone to look into what's going on.
Now this is where there is a lot of hold up because we have different types of endometriosis.
So let's say you've got a big cyst on your ovary.
You go for the scan.
They can see that.
Okay.
We're getting somewhere with it.
We probably had got an idea.
Something's going on, and we need to intervene, deal with it.
Or there's these deep nodule types, and it's sticking the bowel and the urine, you know, urethra together, and that needs surgery to sort of pull things apart.
And then maybe the sex would be less painful, and she stands a chance of getting pregnant.
But there's a third type of endometriosis, which are these pretty tiny bits of tissue, which are like the lining of your uterus, the endometrium, the bit which holds the pregnancy, but they're in the wrong bit of the body.
They're in your pelvis.
They're maybe in your lung.
They're all over the place, and we can't see that on the imaging.
And there's no blood test.
Right.
So this is the person who's got lots of symptoms.
We haven't managed to get anywhere with the imaging.
So now we're in this black hole of, really, what do we do next?
Do we put them straight onto some kind of pain treatment or hormone treatment?
But but that's a problem if, actually, this this woman wants to get pregnant.
She wants to have a normal life, etcetera.
So she doesn't want all this hormones.
So that's when you need a surgery, a laparoscopic surgery.
They've got to look inside your pelvis to see what they can see.
And so with the best will in the world, if you think about that journey, they maybe started their periods at 12.
It's ten years later at least, or maybe they're even into their thirties.
And now the pill's not really working.
They want to have a baby.
The imaging hasn't shown anything.
They're in terrible pain, and they've got to then be put on the wait list for surgery to find it.
So we're already, you know, eight, nine years into this this process.
And then once there is a diagnosis from the surgical thing, then then you've got to think about what are the different pathways that you can go down to achieve whatever it is you want.
Do you want pain relief and you're happy to take hormones?
Do you want, to have a baby, in which case hormones aren't gonna work?
We're gonna have to think about something else.
Do you have really bad disease, which is sticking all your organs together, in which case you need a surgery?
So So that that's when it really sort of kicks up.
But but you're not doing that just in your general practitioner surgery.
You're doing that with a specialist group of people to whom you've been sent, like, to a proper center center of excellence.
If you need the surgery, you might need the bowel surgeon there and a load of other people.
Also, if you think about it, if someone goes just with painful periods, I think for a lot of people it's not their first thing that they think of.
They don't think oh endometriosis.
And then there's the other associated problem which is the other unpleasant similar but not the same disorder called adenomyosis which gives a lot of pain and that's even more difficult to treat.
So that's why everything takes a while and and what we've really understood in the last few years is these lesions can affect your whole body.
Your body's reacting against them.
You've got an inflammatory reaction in your pelvis.
You've got cross sensitization of nerves.
You've got brain changes, fatigue, and you can get flares of extra terrible pain around time of your periods.
So it's not a benign disease in any way.
It's very devastating for people.
And one of the things that they find most difficult to manage are things like pain flares, you know, where they get a sudden change in pain.
Maybe they've got their pain sort of controlled, and they're planning to go out.
They've got a social function, and then they get a terrible pain.
They have to miss it.
This is you know, these psychological impacts of your life hanging by a thread at all times, I think are one of the reasons why depression, anxiety, and, low mood are really, really common in people with endometriosis.
And that's even with a diagnosis.
You know, it's it it really is it it is to me when I it's amazing to me how well some of the patients cope with such a big impact on their lives.
I agree with you.
I think women have these episodes of chronic pain.
I mean, this is every month for someone who has painful periods Yeah.
You know, four to seven to ten days.
That's at least one quarter of your life, one half of your life that's spent in pain.
And I think as a physician, it's really simple to kind of say to normalize it and say, well, you're a woman.
You're having periods.
What's the big deal?
But I do wanna take this opportunity to say, like, painful periods are not the norm.
They're common
No.
But they're not the norm.
There's no reason the uterus should be cramping and cranking down like that.
It's very, very normal for you to get ready to have a bleed and for that bleed to start and continue and end without the uterus having intense cramping.
So that's sort of a different conversation, but I think it's worth saying.
I I think another you're you're talking about the limitations of diagnosis and the delay in diagnosis, which it's so important to understand.
As a gynecologist myself, it is really difficult because if someone comes in at 13, I don't want to go send them for a surgery for endometriosis right off the bat.
Right?
I I but what I do think is we we that doesn't mean there's not more we can do to help improve those cycles and improve their their coping with the cycles, if nothing else, and the pain control and all of that.
So Mhmm.
It is a difficult diagnosis because it almost has to escalate before it moves from kind of we call it primary dysmenorrhea.
Right?
Just some people have more intense periods for reasons we won't get into.
You kind of have to wait and see if it escalates.
Are you having any of these other symptoms of bowel discomfort or pain with sex or, other other GI disturbance, the bloating and everything like that before you get enough symptoms to really create a convincing argument that it is endometriosis.
So I appreciate you highlighting all of that.
You mentioned the three different types of endometriosis, we'll say, with the nodular and the peritoneal and the having endometriomas or a big chocolate cyst, as we call them, or a big cyst filled with endometriosis.
Will you continue along those lines and tell us what do we know about endometriosis?
What is it, and why does it come?
What what is we call it the pathophysiology.
Right?
What is the biology behind this happening?
Because it's kind of odd.
And like you mentioned, I will I will say, as a gynecologist, endometriosis, it's complicated, and it's tricky.
There are other things that we treat that are quite a bit more straightforward, but endometriosis has lots of different components that go into it, and every patient is a little bit different.
So help us understand what we do know about endometriosis and where it's coming from.
Yes.
And and I think, you know, to a certain extent, there's been a slight you know expectation that every every bit of endometriosis is the same.
So I would like to say from a scientist's point of view I think the more severe disease, that nodular disease, is is possibly very different to the more superficial lesions.
One of the things we do note is that quite often, if you take an individual person, they'll have a they'll have a combination of the ovary and the nodular ones.
And and then there's a large number of people who have them all superficial.
So if we step back and we look at historically where where did endometriosis come from?
So what do we know about it?
What we know is it's always been defined by the pathologist looking down a microscope at the piece of tissue removed during the surgery that you finally got to have.
And they look at it and they say these lesions look like a bit of endometrium.
And what the endometrium is is normally contained within the womb, and it's the thing that nurtures the baby.
Right?
So the whole premise of this was what we've got is a bit of this endometrium or something that looks like it down a microscope, and it's in the wrong place.
Because when it's in the womb, it behaves itself by and large.
We get cycles of growth.
We get cycles of inflammation, and we get menstrual breakdown and flow.
So it calms and it goes in a healthy way under the influence of hormones.
Now we've got these bits of tissue, and they're not where they should be.
But they're behaving as if they're gonna respond to the hormones.
They're gonna try to bleed.
They're gonna get inflamed, but they're in the wrong place, and they're going a bit AWOL.
So how did they get there?
Where have they come from?
So the biggest sort of, you know, idea that's been around actually since the nineteen twenties, nineteen twenties, we're talking a 100 ago here, was that what it was was some of the menstrual flow didn't go out through the vagina.
It went back up through the fallopian tubes in something called retrograde menstruation.
And it went out past the ovaries and ended up in the pelvis.
Okay.
Now there's two things about that.
That could explain why a lot of the disease is in the pelvis.
But actually some studies done a few years ago showed that you'll find blood within the pelvis from people during menstruation, like eighty, ninety percent of women.
Right?
So eighty, ninety percent of women don't get endometriosis.
It's maybe ten percent.
So there's something else going on.
And the other thing it can't explain is why you get these bits of endometrium in places outside the pelvis.
Now that's rarer, but it still happens and they're very hard to diagnose.
Now the guy that came up with the retrograde menstruation idea was a guy called John Sampson, and he presented it in some little scientific paper, and everybody fixed on it.
Now if you go and read John Sampson's papers, and I have gone and read John Sampson's papers from the nineteen twenties, and there was a guy who recently wrote a very nice review about this, Samson never said that was the whole reason why bits of endometrium ended up outside of the womb.
He said some cells will probably transfer out through the lymph or through the blood vessels, and that's where they end up in other places.
So one of the main things that people think might be happening is clearly these cells that are normally in the womb are ending up in the wrong place.
And then what they're doing is they're growing, they're behaving badly, they're proliferating.
And what they do is they make little new blood vessels and they make new nerves, and the nerves connect to the central nervous system.
Now pain, if we step back and we go, what what's pain?
Pain is something that actually is registered in your brain.
It's you know, you cut your finger, but you need a you need a response to the nerves, and then you're gonna register it in your brain.
So it's all about these lesions behaving as if they're little new entities.
They've got nerves.
They've got blood vessels, and they've got lots of inflammation in them.
And so our whole idea is that the presence of these bits of material behaving badly outside the endometrium is sparking off a lot of extra stuff in the body.
So we look in the pelvis, in the fluid, lots of different changes in the immune cells, lots of inflammatory mediators.
The whole thing is kinda sensitized.
Right?
And you get sensitization of the ball, that'll set off a load of nerves, that'll give you pain.
Or if you've got nodules sticking two bits of tissue together, that'll sensitize the nerves, that'll give you pain.
So there's lots of inflammation, nerve function, and things going on, and this is why we end up with a lot of these symptoms.
Now some symptoms are less obvious.
One of them is fatigue.
So we've been doing studies on why so many women with endometriosis feel fatigue.
And they said, we're not talking feeling a little tired here.
We're talking shattered, can hardly get out of bed, totally knackered.
And that's quite common in chronic pain conditions, and it seems to be a big problem for the patients.
And then there's other things like there's a thing called endo belly where your whole sort of body wall kind of inflames and you gets bloated.
And you look like you're pregnant, which is pretty awful if you're trying to get pregnant and you've got endometriosis.
And I have to say that we really don't understand why people get endo belly.
This is one of the things.
But the patients constantly say how awful it is and how it happens, and it happens particularly during their periods.
So there's this big change in your body.
Your brain's changed.
Your body's changed.
Things are inflamed.
You know?
And people get lots of gastrointestinal disturbance as well.
You know?
They get GI symptoms and urinary symptoms, and I never would have thought that was anything to do with endometriosis.
But these are the things that are really bothering the patients, these GI symptoms, these more, you know, exhaustion symptoms.
And this is the stuff that none of us talked about five years ago.
Literally never, you know, ever.
We just thought it was all about periods and, you know, pain, but we didn't talk about the other stuff.
100%.
And I just wanna add the perspective gynecologist.
Right?
I was trained a long time ago now, and, the the training that I received for endometriosis was that retrograde menstruation was the main main mechanism of disease, and then maybe lymphatic, maybe hematologic or blood spread.
But we were not really trained about any symptoms other than painful periods, maybe heavy periods, typically not dysfunctional periods, meaning all all over the place.
It's mainly heavy or painful.
And one of the key hallmarks that we were trained in is that it's cyclic.
Right?
If you have symptoms that are cyclic, then it's more likely to be endometriosis.
But if you're having symptoms all the time, then probably it's not endometriosis, and I think that's incorrect.
I think definitely the flaring of the symptoms with a a menstrual cycle makes a lot of sense with endometriosis.
But I'm really glad you're bringing up these other symptoms because this is not something that is as you said, it's not something that's talked about.
The idea of fatigue, you mentioned endo belly, which is not something I had ever learned about in my conventional training.
But this idea that people with endometriosis just have this almost pregnant belly, you know, this big distended full discomfort, in their belly along with, as you mentioned, GI symptoms and bladder symptoms, like painful urination or urination frequency, and then also pain with sex.
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Now back to the show.
Number one, I want people to feel validated who may be listening, who have endometriosis, or know someone with endometriosis that it's like, oh my goodness.
All of these symptoms could actually be connected.
This isn't just painful periods and bloating and fatigue and everything else.
Sometimes it's all connected.
So is there anything else you wanna say about what else we're starting to uncover or maybe theorizing about this mechanism of of the different components that contribute?
I know you've done some research into the microbiome.
Is there anything else that you wanna add in at this point looking at besides this idea of hematologic spread or lymphatic spread or or or, you know, retrograde menstruation?
What are the other factors that may be contributing?
Is there a genetic component?
Is there a dietary component?
Is there a chronic inflammation component?
One of the things we have made a lot of progress on has been the genetics.
Right?
So the genetics is actually fascinating because, of course, what we're doing is working across thousands and thousands of samples from around the world.
There's been a really big effort on the genetics, and the genetics has told us a number of really interesting things.
So so the thing about genetics is it's confirmed there's definitely a heritable component here.
So some landmark work done with twin studies in Australia, brilliant work, compared the rates of endometriosis in dizygotic and monozygotic twins.
So remember, dizygotic twins are not genetically identical.
They've shared a uterus.
They've been in the same mother to be, you know, born.
Monozygotic twins are genetically identical, and they've had the same utero environment as well.
So if you compare these two sets of people, what you can say is in the monozygotic twins, if one of them has endometriosis, did the other one have endometriosis at a greater rate than the dizygotic twins?
And that sort of takes the environmental aspect of the womb away, but it says pure genetics, are they more likely to have endometriosis?
And the answer is yes.
Now you'll know patients and I've met people all of whom say, I've got endometriosis, and my sister has it.
And I suspect my mother had it, but she never got diagnosed.
And I'm worried about my daughter.
This is this is what so there's an element of genetics in there, and that's not a surprise.
When we get into the genetics and we do a deep dive into it, we find that actually there's similarities in in the kind of gene subtle changes in genes we see with other hormone dependent reproductive disorders like fibroids or heavy bleeding.
So there's an element of similarity there, and that's because all of these depend on your your hormones having a go at them.
And that's not a surprise.
And it is giving us some ideas about what might be the genetic drivers.
But what it's also told us is it's not a gene defect.
Like, you know, it's not like we've got a mutation and we get BRCA dependent breast cancer.
Endometriosis is multifactorial.
You might have a little change in a gene here, a little change in a gene here, but it's a combination that's that increases your risk.
It's not a one step thing.
It's a predisposal, so you may have a
Yes.
Predispose to it.
More risk.
Yeah.
Yeah.
Yeah.
More risk, but it's not like we can correct the gene defect.
You know?
It's it's it's just something's enhanced your risk.
It's made you maybe you're the person where the retrograde menstruation is such that your immune cells can't eliminate the the material and the lesion forms.
You know, have you got maybe an immune system that just doesn't respond as strongly or hormones that work more.
And this might be why some people get more of these lesions.
But where the really interesting stuff with the genetics is is being now we've got the data for endometriosis.
We can look at the data for lots of other disorders, And we found really big overlap with disorders like migraine.
Right?
Painful headaches.
So that makes sense, doesn't it?
Because we've got a pain condition, and guess what?
Similar genetic changes to migraine.
So that's really interesting.
And also that could tell us that if there's great drugs for migraine, why aren't we investigating them for endometriosis?
You know, these are the things that we should start thinking about.
Asthma, inflammatory condition, you know, lung condition, which involves lots of immune cells, strong genetic links with endometriosis.
So guess what?
That makes sense because endometriosis is an inflammatory condition.
And and then the final one, which sort of gets me to the bit about the gut, is similarities to gut disorders like irritable bowel syndrome and, you know, gourd where you you have more reflux and things.
Similarities there.
And then the penny drops because you go, oh my goodness.
Is this why when I did a a a patient day a few years ago, I said to some I said, can everybody just put their hands up if they've got asthma?
Half the people in the room did.
And this was because we'd we we kept coming up with people who got asthma.
And then if you say to patients, you know, do you have GI symptoms?
Does it seem like IBS?
You find that, which gets me back to misdiagnosis.
So a significant proportion of people with I with endometriosis, their first diagnosis was of having IBS because of the gut symptoms.
So isn't that isn't that you know, it's just another one of these examples where endometriosis presents in such a mixed way that, you know, if you've got if you've got gut symptoms, you don't go to the gynecologist for gut symptoms.
You go to the, you know, the, you know, the gastroenterologist.
But what we should be doing is saying, if you've got a lot of gout symptoms, you've got a lot of pain, maybe you should be having a joint clinic.
And, actually, my clinical colleague has just started a joint clinic with the gut people.
I love that.
I love that.
I love that you kind of break it down into some of those categories.
In functional medicine and integrative medicine, that's a little more of what we do is I call it thinking in bubbles, you know, where we kind of think in big categories of things of the idea of, like, there's a pain component here.
And as you mentioned, people who have endometriosis very frequently have other pain disorders, whether that's migraines, as you mentioned, or, fibromyalgia or something called vestibulodynia, right, this this painful vaginal
Yep.
Syndrome, a chronic bladder pain syndrome or interstitial cystitis.
Yeah.
They a lot a lot more chronic bladder pain and interstitial cystitis, and that's really grim.
I mean, you know, interstitial cystitis is bad enough without having endometriosis as well.
Right.
It's like that.
But this is where we start I mean, you as a scientist, this is where we start to say, like, how else could we treat it?
I think by having these bubbles or these categories where we're saying, okay.
Folks with endometriosis need some sort of addressing of the upregulated pain system.
They also need addressing of the microbiome.
They also need us to help address the inflammatory side of it and the immune system component that could be could be marking.
And this is where conventional medicine and and I'm sure you'll say this too of of research.
It's a little harder.
It's a little harder to do multifactorial approaches to diseases in research and in conventional medicine because conventional medicine likes if a, then b.
Right?
This happened, and therefore, this symptom occurred, and we found a drug right in the middle of that.
Therefore, we solved the problem.
Right?
And think about, like, an ear infection.
Right?
You have bacteria in your ear canal.
I gave you an antibiotic.
It stopped the infection.
Yay.
Right?
Like, those things are pretty easy to address, but this is not one of those things.
And the more we try to treat it as one of those things, which is what we've done, and with some success, you know, when we give synthetic hormones, when we give progestins and say, let's just turn everything off.
Let's stop the cycling, and that will stop the proliferation of the disease and stop the flaring of the disease.
It works sometimes, but it's really only addressing that one component.
Right?
And not and some people have really terrible side effects as a result of it, or they wanna have a baby.
And and then you you kind of have to have these hard conversations of, well, if you wanna have a baby, you better hurry.
Because as soon as you off that birth control, your endo is gonna proliferate again and or you'll say, like, we're gonna go do a surgery and we get rid of all the endo, but then you better do something, either have a baby or get back on hormones because it's just gonna keep growing again.
So it's very unsatisfying.
So that's that's the perfect segue then into I wanna leave plenty of time to really talk about, like, what do we do about this?
Because if you're listening and you have endometriosis, you're like, yeah.
Yeah.
Yeah.
I get it.
It's bad.
It's hard.
It's it's got lots of symptoms.
And depressing and
Yeah.
And and frustrating.
Yeah.
But, I I don't want people to think there's no hope.
So first off, the conventional medicine people, people who I work with, we are looking at how we can fast track stuff.
So if you wanna develop a drug remember talking to somebody in a pharma company ten years ago, and I said, a new drug for endometriosis.
And he said, oh, forget it because that's gonna take fifteen years and cost millions of pounds.
You know?
And they're not interested in that.
So what we've done as academic researchers feeling annoyed about it, we've said, okay.
We we're starting to understand more about the disease.
We've done work with tissue samples from the patients.
We've done assays.
We've used models.
We've done cell cultures.
We've come up with a few things that we think we could we could address, and that might be inflammation.
It might be a metabolic change in the cells.
It might be dialing down the pain pathways.
So what are we gonna do to fast track it?
So what we do is we say, okay.
What drugs are already there for something similar?
So let's take, you know, the metabolic dysfunction or the immune cells.
So we then go we go and we look for drugs that are already in existence, and we say, right.
We're gonna test them in patients with endometriosis or what's been found for IBS that's never been tried in endometriosis, what's been used for headache, migraine.
There's some great new drugs for that.
Have they been tried in endometriosis?
And this is what we're trying to encourage people to do.
And we're trying to encourage people to get away from animal models and cells in dishes to doing more trials in patients to see if it changes their symptoms.
And and, actually, there's some quite good stuff going on, and some of it's come from what patients are doing themselves.
So let's take an example that has become very popular in some countries, learning from the chronic pain disorders.
So a lot of people with chronic pain, people particularly with pain that you get from cancer treatments, they take cannabis based products, cannabinoids.
Now they're not they're obviously not licensed in all countries, but in some countries, they are freely available.
And even in countries where they're not freely available, through the classic medical route, patients are going and and getting them themselves.
And they can alleviate pain.
We know they can, but they're not properly tested, validated.
There's not a really good, well organized drug there because there seem to be food products, medic you know, like teas and things like that.
So that's an area where we can do better work.
And then we can do this drug repurposing.
Mhmm.
Yeah.
Sure.
Heather, are you seeing that with CBD or mostly cannabis?
Okay.
So so the critical thing with cannabis based products is you you've got to get rid of the THC.
Otherwise, you will get the high and the other, you know, psychological things.
So it's all about getting good CBD products with minimal THC to control pain, and that's where the effort needs to go.
We're running a trial starting in September.
People in places like Israel already, prescribed them.
There's a lot of interest in Australia.
It really depends on where you are as to whether there's a a legal framework for it.
And I wanna emphasize
there.
The CBD, not THC.
You need to you need to be careful.
I wanna emphasize there because sometimes it sounds like when we're doing that, that we're just numbing the pain.
Right?
Like, let's just manage the pain, but but correct me if I'm wrong.
But with CBD, there is some actual downregulation of that pain hypersensitivity.
Right?
So it's not just saying, like, we're gonna help you cope with this better.
It's actually helping the brain see less stimulation at that at that site of the nerve stimulation.
Is that right?
So the thing about CBD is it acts through a number of different receptors, different binding proteins, and we know they are expressed on the nerves and on the lesions.
And we've done a lot of work to show that some of the, you know, particular proteins that get activated in the pain pathways in endometriosis are dialed down by the CBD.
So we are not suggesting you should take something to knock yourself out.
What we wanna
do is
so the the principle of pain is to dial it down so that it's lesser.
And that's that's mechanistically, CBD will do that.
And, again, the other thing which, of course, one of the areas we've got very interested in are these gastrointestinal symptoms like IBS, which can be quite distressing.
Now there's a reason for that and that's because there's a lot of big body of work now coming through from people who work on something called the gut brain axis and they've done a lot of work in things like Parkinson's and other neurological disorders and they've shown and and your general health.
What your diet is and what your gut bacteria are will influence the whole of your health.
They'll also influence your inflammation.
So I used to have psoriasis and I changed my diet and I started eating much more nuts and other things.
And my psoriasis is pretty good now.
So it can really work at a personal level.
But what people many of the patients have said to us is, yeah.
Okay.
Diet can help us with our symptoms, and it may even help with inflammatory symptoms.
But there's no one size fits all.
So if you you take a group of 20 people and we did this at a science festival once.
One of the patients was talking about her diet change, and then we asked for questions.
And everybody sort of said, but my I do this with my diet, and I do this with my diet, and I do this with my diet.
And then some people get quite angry because they say, but nothing I do helps with my diet.
And and, you know, it's not one size fits all.
But we ran a big international survey asking people, what are you doing?
You know?
Because people were all saying, oh, you should eliminate everything.
You should become a vegan.
You should do this.
You should take magnesium, etcetera.
So confusing, and everyone felt a bit worried and guilty they weren't doing what they should be doing.
And when we asked 3,000 people what they were doing, first off, we came up with 20 different diets people had tried and supplements, and some of them had helped.
Some of them had helped some people.
Now the people who had been most helped were the people who didn't have the most severe pain.
So you get pain and some people got quite bad pain and some people got terrible pain.
The terrible pain people, it helped a bit but not that much.
But the people who had a mild pain and they were sort of coping with it, it helped with that.
It probably just dialed everything down a bit more.
And the diets that really helped them were diets where they took away some things.
So they took away gluten.
Now what do we all know?
All the IBS guys say gluten.
Yeah.
Get rid of that.
Gluten, caffeine, alcohol, and dairy.
Those were the ones that had the biggest numbers and the biggest effect.
Now some of the more severe diets, you know, like vegans, didn't seem to be very effective.
This thing called FODMAP where you eliminate everything works a bit, but it's hard to stick to in normal life.
And these these sort of elimination ones seem to be the most easy to stick to, and they were causing so, forty percent of the people doing that said it has helped with their pain.
These were large numbers of people.
So I I think the message is it's worth trying.
And the other things that are worth trying, which some people find hugely helpful, are, physiotherapy, particularly around the sort of pelvic wall.
That can be very effective for some people, this this sort of deep tissue physio that we have a physiotherapist now on our team who's doing physiotherapy with the patients.
Some of them are finding that very helpful.
We even had somebody who did acupuncture with our patients.
They equally found it very helpful.
And I think I think I feel really passionately that patients are doing a fantastic job trying to manage their own symptoms and that we who are on the front line of trying to improve things for patients with endometriosis should listen more to them about what's working for them.
So yoga can help some people.
Definitely exercise.
Anything that works for a chronic pain inflammatory condition will probably help a bit.
But if it doesn't work, it's not your fault it hasn't worked.
It's just you are not responding to that particular intervention.
But there's lots of different things that people are finding helpful.
And some of the different, patient forums are really helping patients identify those.
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Now back to the show.
It is really important that some people do feel empowered to do something, particularly if they're waiting for a diagnosis.
Yes.
And, you know, and as a clinician, when I'm talking to these patients, I think there's a couple misconceptions.
One is I tried that.
It didn't work, and so I abandoned that as a tool.
Like, I've checked that one off my list.
That one's not going to help me.
And I think as we go back to talking about what's causing like, when you describe that pathophysiology, right, these cells are in the wrong place.
They're sitting inside the pelvis, and they're getting inflamed when the hormones come.
They're recruiting new vasculature, new nerves.
When we really think about what's going on there, that's how we really get to focus on things that could help.
And one of the things with anything hormonal that's particularly annoying for patients and researchers alike is that it's slow because the hormones only cycle once every 30 days, once every 28 days.
Right?
So a lot of these things won't help the first period you have, but they might help the second.
They might help the third.
And so sometimes when I'm offering some of these modalities to patients, we have to say, gosh.
This is gonna be hard, and you're not gonna know if it's helping until you've done it for three to six months.
Now I think past six months, it's probably not gonna help, but but it's slow.
And I also think that if we think of it from a perspective of you probably have one problem causing your endo.
Let's find out if that problem is gluten.
Nope.
Not gluten.
Let's find out if that problem is xeno.
That's the wrong paradigm.
I think as we start to recognize that there's multiple issues going into endo, then we can treat it from multiple factors.
I've heard it talked about, like, a leaky roof.
Right?
Like, if there's one leak in your roof, you can plug that leak and be fine.
But if there's eight leaks that are causing the flood, then plugging one leak isn't gonna do anything about your flood.
And that's where, from endo, can we do a little bit of CBD to dial down the pain control?
Can we do some meditation and yoga and breath work and, you know, somatic healing to really dial down that pain experience?
Does that mean you're making it up?
Nope.
But it could mean that physiologically, your pain experience is really cranked and revved.
And as we calm that down, you may not experience the pain as intensely.
Okay.
We're doing that now.
Okay.
Now let's come over here and see if we can calm down symptoms in the gut and symptoms of inflammation from gluten and dairy and caffeine and alcohol.
Okay.
That's good.
Now let's come over and add some acupuncture.
Now let's come over.
And when we have this multi teamed approach, this multifactorial approach, then you really start to plug more of those leaks in the roof where you start to say, gosh.
The floodwaters are decreasing.
Like, really, I'm starting to find stability.
So more just a a like a recommendation for patients.
Don't rule it out if one thing didn't work.
I think it's hard, but very frequently, we're layering on treatments instead of saying, well, I tried a, and that one's out.
Now that's hard.
It's frustrating, and it's slow.
But I do think that's where people get better results.
And you come from tell us a little bit more about this multi teamed approach or, multispecialty approach that you're familiar with.
I mean, we we we're very much, committed to trying to provide a personalized approach for people, and I think, you know, there's there's several things with endometriosis and also with adenomyosis.
First, the patients need to be believed when they describe their symptoms and not not dismissed at a a young age.
And that, the other thing is it isn't one size fits all because at a different stage of your life, you might want something different.
And, you know, historically, there was this whole, oh, you finished your family, just have a hysterectomy kind of narrative, and that might not solve anything for some people.
Yeah.
So I think, what we think is we need to find out what is the symptom that's causing the most problem for the patient?
Right?
Now for a very large proportion of our patients, that that's undoubtedly pain because that that's the kind of clinics that they they're accessing our services through.
But in some places I've been, the concern is is fertility.
I was in, Turkey recently, and the overwhelming concern there is is they they want to have a baby, and they they want to get treatment for their fertility.
And, certainly, progress has been made.
Their IVF can work very well for people.
But, again, they've got to manage the symptoms while they're having the IVF, which can be quite distressing.
So so our approach is to, start from the perception of what could we do with with the kind of standard medical interventions that are available to us in our armorarium, and, you know, that could be hormone suppression, which can work very well for some people, but not for everyone.
And we want to avoid these pain flares where people have uncontrolled pain and end up in accidents and emergency needing morphine.
This is very distressing for everybody.
And we certainly are very keen to share all the information we can with them on the alternative things that might help them in their day to day lives.
So we have a physiotherapist who will offer sessions and and particularly I think the patients value the chance to talk to the physiotherapist about their symptoms.
Somebody is there listening to them.
It's not a medical quick meet.
It's a, you know, what's the symptom?
What can we do?
What can you do yourself?
We have a dietitian on our team who will talk to them about their diet because there's so many misconceptions about diet, as you say.
I mean, I've been to a talk where somebody said, well, just give up red meat.
He was sitting there on the screen in his white coat, and the patients were utterly offended by this suggestion.
It was all their fault because they were having a burger.
So, you know, gotta have a much more nuanced conversation.
I I do think that anything that involves physical activity, if you're able to even go for a walk or move more, all of these things are good for mood.
And after all, the rates of suicide and low mood within individuals with women with endometriosis are higher than the average.
It is a profoundly disturbing life changing disorder, and you can understand why people feel despair.
So the more we can do to work with people such that they and their loved ones and their supporters, because often it's, you know, it takes the family support as well, can help them navigate through it and particularly on bad days because bad days do come for patients with endometriosis.
And so many of them I see having many repeated surgeries and surgery is a very tense tough thing to have.
So I think what we can and and the other thing is helping people manage expectations after surgery.
We did a study recently which showed recovery after surgery, was quite slow, actually.
They weren't gonna feel bouncing out of bed in a couple of days.
So it's all about a more holistic patient focused approach and that's what we profoundly believe and I see that happening more in specialist centers.
It's more difficult for people who live in isolated communities, it's much more difficult for people who don't live in a first world country.
Their access to health care is severely limited and they do end up with very severe disease in some cases.
Well tell us what as a as a researcher what what is there anything you wanna share that may be coming for us?
Any other new diagnostic tools that may be coming or any new treatment modalities?
Is there anything we can kind of look forward to in the horizon or or even just where you see the state of endometriosis research going?
So I think, for me, the biggest excitement at the moment is the improving die improvements in diagnostics thanks to advanced imaging.
So this is this is really quite exciting.
Now we've been able to do transvaginal ultrasound to detect some of these, you know, bigger nodules and things.
But we've we've got this we in Edinburgh have, like, seventy, eighty percent of the people at our clinic have probably just a few lesions somewhere, and we're they're not getting diagnosed, and they don't know why they've got these symptoms.
So one of my colleagues is running a and the also, there's some other people, I think, in Australia doing something similar.
So we're using knowledge we've gained about what's different about a lesion, what it's what you know, the fact it's got a lot of immune cells in there, and it's got this sort of inflamed compartment with a a bit more of a expression of particular protein.
What our colleagues, actually, they're the cardiovascular guys, have designed is a probe which is radiolabeled, which will bind onto the tissue.
They use it for cardiac stuff, but they said, oh, but it'll work for you too.
So we're trying this out, and what we're using is the radio label, very small amount of it, inject it into the person, and then we give them a scan called a PETCT, and that's gonna be able to light up areas where this probe is binding.
So first off, it binds to the endometrium, but also it's binding to the lesions.
And we've got some orig we've got a bit of preliminary data at the moment which looks really promising.
So I'm hoping in the next two to three years we're gonna have a way of doing this screening using the probe based approach.
Now that's fine in big centers with big scans and everything else like that.
But we you know, the holy grail is to have a blood test, and there are new opportunities there.
There's, we we have something that we think could probably work for a blood test.
We need to get more samples, but but we think it'll work.
There's people, in some of the commercial companies where they've got blood tests going as well.
There are a few people out there making some claims for some saliva tests, but we'd like to see them validated in bigger groups.
But there's a lot of work going on to blood tests and things.
That's great.
So maybe in the next five years, we'll get a blood test because that that's really what we need.
Yeah.
The scans are gonna be helpful because they'll tell us where the disease is.
It's gonna help the surgeons.
It's gonna help everybody.
That's good.
So then the other area of development is the area which I talked about where we're taking drugs off the shelf being used for all kinds of other disorders, and we're trying to test them in people with endometriosis.
So the focus there is alleviating the symptoms.
If you've got terrible pain, let's get a pain drug and see if we can get it from the headache people or someone else and try that.
And that is happening, and there's plenty of trials going on with that.
And then, I guess, you know, more distant, it would be nice if we could maybe do more on whether there is an infection that might have triggered things.
And is did did somebody have, you know, an infectious agent that's sitting in their lesion that's caused it to happen?
And we need to do more work on that, actually, to be honest.
But I think the urgency here is to improve the diagnostic delay and to get new drugs and new therapies that aren't about hormones, but will deal with the symptoms tested.
And it it is getting faster.
We've just had a huge international meeting in Sydney, Australia.
There were 1,100 people there.
There were lots of patients there.
There was, actually social scientists talking about how people deal with pain perception.
There was lots of basic scientists and that's 1,100 people coming together all really focused on this disorder and accelerating improvements.
So I feel much more optimistic than I did five years ago, and I really do think we're gonna make some progress, particularly with diagnosis in the next three years.
That's so exciting to hear.
That's so so wonderful that you're on the front lines and and pushing it for us, you know, for those who are suffering and, for those who need advocacy, you know, to be able to have someone who's fighting for it and and pushing that development.
Along those lines as we wrap up, is there anything else that you wanna say to this patient population who struggles with endometriosis, struggles with pain?
Is there anything else you wanna say as we as we finish?
Well, I think I think the advocacy angle is vitally important, and I'm really pleased that patient organizations are working across international borders to support each other.
But, but, again, if you have painful periods to the point that it's impairing your normal activities, that is not normal.
And it doesn't matter if it's endo, adeno, painful periods, or whatever it is, it shouldn't be normalized, and you should get appropriate care.
And don't put up with being fobbed off.
It's extraordinary to me how many people I talk to say, if only someone had believed me when I first went for care, I would not now be in my late twenties with a fertility problem and chronic pain.
So we need to be looking much more at young people.
There should be red flags for people in their teens if they got severe symptoms and some I mean, I agree with you.
We don't particularly want to do surgeries, but if we could do imaging and see what was going on.
You know, once you've got a chronic pain condition, it's hard to roll back from it.
Let's get let's get to the people in their teens.
Let's not leave it till they're 35.
I couldn't agree more.
Tell us where people can find you and also the work you're doing to move this forward with your Endo 1,000 project and how, if there are women here in The US who can get involved or
I represent a group called EXPECT.
We're based at the University of Edinburgh, and it's it's an, you know, it's a multidisciplinary team.
So our vision for the next two to three years is that we're gonna recruit a thousand women, and we're gonna follow them on their endo journey such that we'll get multiple blood samples, urine samples, and things from them.
Because what's been a problem is we we see someone once, we get some information, but we never know what happened to them over time.
We don't know what their response to treatments was and things like that.
We're still fundraising for it.
It's been incredibly hard to get any money.
We, you know, we've had to go to donors, and and we have patient groups raising money for us.
We're gonna start it this September.
It's not open to people in The US, but the model that we are setting up, we will be, you know, encouraging others to do exactly the same thing.
None of what we're doing is in any way secret or not being shared with others, and we're doing it with different partners across the world.
So, I do think the future is in integrating data using AI, using imaging, being able my my my holy grail is a young person goes to the doctor and they describe their symptoms, and the doctor makes a note of them and they have, you know, something on their computer where they put the data in, and this massive red flag comes up saying, consider endometriosis Yeah.
Now.
That would be that would be a win.
That would be a win.
If people want to donate to or or, support funding, where can they go to donate?
Well, we have a donation tab on our on our university website, or I I I certainly would encourage people to donate to local patient organizations who provide support and and guidance for each other because quite often it's it's great for the women to be able to get together to share their experiences.
So, I'd encourage everyone to join one of those groups and support them.
If they want to donate for research, the University of Edinburgh has a donation system, and we're always happy to have money.
Yeah.
Well, wonderful.
Philip, thank you so much for this conversation.
I think it's been fascinating and such an important conversation.
We need to have way more conversations like this about women and the issues that are are plaguing them, the one ones that are especially unique to women, and hormones make it hard.
They make it really tricky with the cyclic nature and with the evolution of our hormones throughout our reproductive years.
So I'm truly grateful for for you endometriosis.
And I know there's a lot of women out there who are also really grateful.
So thank you for sharing with us and and for being here.
Yeah.
And just one one final thing.
A a a a a much underserved population, of course, are trans men.
If you were assigned female at birth, you may still have endometriosis.
And they they have a a terrible difficult journey just to acknowledge their suffering as well.
I appreciate that.
I appreciate that.
Well, thank you again.
And, we'll we'll look forward to talking to you again in the future.
Hopefully, we'll have even more progress.
That's right.
That's right.
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