Endometriosis: the painful truth

This event was part of the RSE’s summer events programme, Curious.
Find out more on the Curious website.

Endometriosis is a common condition that can cause chronic pain which affects 1 in 10 women and may reduce their chance of becoming pregnant.

The cells that line the womb are extraordinary; they grow and shed in a constant cycle of renewal that make pregnancy possible but that can also cause extraordinary pain. Endometriosis is the name given to the common condition where cells like those of the womb lining grow outside of the womb in other parts of the body. It can cause chronic pain yet rarely receives the attention it deserves and women often have to wait many years for a diagnosis and treatments can be limited. We will share the latest thinking on this difficult condition that affects one in ten women in the UK, looking at treatments therapy and how patients are shaping the research agenda.


Please note transcripts are automatically generated, so may feature errors.

Fiona Stalker 0:00
Good afternoon, ladies and gentlemen. Welcome to the Royal Society of Edinburgh events called endometriosis, the painful truth. My name is Fiona Stalker. I’m a journalist and a presenter at BBC Scotland working across TV and radio. I’m speaking to you from Aberdeen today, which is one of the great things about these virtual events, we can come from anywhere in the world, I’m just up the road from you guys in Aberdeen, you could probably see behind me, it’s a fantastic day, we like to call it the Northeast riviana. The sun is shining today. But thank you so much to all of you who’ve come along. I’m particularly delighted to be here today, because it’s a subject that I’m interested in both personally and professionally. Full disclosure, I have endometriosis myself. And it’s been, I suppose, a mixture of my journalistic curiosity, some would say noisiness and my own need to find out more about this debilitating condition. And yet such a little known condition that led me to Professor Horne, who you’re going to hear from shortly and his team, to find out about the amazing work that they’re doing in this field. And you get to hear about that here first today, which is something fantastic. Just a little bit about my story to put you in a bit of context, I was diagnosed with endometriosis. And that took about 10 years to diagnose. And I’ve been on a mission to kind of raise awareness about it so, so much so I’ve got to say that my lovely colleagues at the BBC raised their eyebrows off and then go, oh my god, she’s talking about lady bits again, but I will keep speaking about lady bit and about endometriosis. For as long as it takes for that awareness, let’s say to reach the same levels as diabetes, because given the prevalence that the two conditions are pretty much the same, in women and you think how much awareness there is about it like diabetes compared to endometriosis? It’s just doesn’t seem right does it so I will keep speaking about endometriosis and lady bits. And each time I do a story about endometriosis or write a column about it or discuss it on one of the programmes that I do. I get absolutely inundated with messages from women who are struggling to get a diagnosis. They’re struggling to get treatments or they’re simply struggling to be believed. They’re covering up what can be debilitating pain at work, sometimes from friends, sometimes some families and some of the stories are absolutely heartbreaking. But there are good things happening. And I think there is more awareness. Certainly since I got diagnosed more than 10 years ago, my BBC Radio four colleague, Emma Barnett is relentless in her quest to raise awareness of the condition that has absolutely blighted her life. And this is absolutely crucial. The first time I spoke about endometriosis on the radio was my first drivetime programme. Three of my colleagues came to see me afterwards to say that they had endometriosis. And they hadn’t told their employer, the BBC, which I must say, is a good employer. We became one of the UK’s first endometriosis friendly employers just before COVID hit, which is a step in the right direction. But there are some incredible research projects going on. Potentially life altering research right here in Scotland, and our speakers today are absolutely the forefront of that. And it makes me hopeful and excited to be hearing about that work. This event is going to look at some of the latest thinking on endometriosis, looking at treatments, looking at therapy, and how patients are helping that research. So shortly you’re going to hear from Professor Philippa Saunders, who’s professor of reproductive steroids at the University of Edinburgh. But first let me introduce Professor Andrew Horne. He’s a professor of gynaecology and reproductive Sciences at the University of Edinburgh as well. He’s an Honorary Consultant gynaecologist to NHS Lothian. Andrew is very highly regarded and and a very, very experienced researcher in women’s health problems. He co authored the book, the experts guide to treat, manage and live well with your symptoms, which I personally find really, really helpful. And I’m looking forward to hearing what Philippa and Andrew both have to say. So I’m going to hand over to Andrew, he’s going to talk you through some of the latest thinking and then we’ll hear from Philippa, Andrew it’s all yours.

Professor Andrew Horne FRSE 4:36
Thank you very much, Fiona, and it’s a big pleasure to be here today and to have the opportunity to talk about endometriosis. I realised that this is likely to be a very mixed audience. Lots of you I’m sure know a lot about endometriosis, but we’re going to start from the basics as it were, and I’m going to give a bit of background to the condition and then hand over to Philippa who’s going to talk in more detail about some of the exciting research that’s happening. So, endometriosis is an incredibly common condition. As Fiona has said already said to affect one in 10 individuals, it’s equivalent to 1.5 million individuals in the UK 190 million sufferers across the world. And as Fiona said, this makes it as common as other conditions, such as asthma and diabetes. And endometriosis is a condition that’s defined by the presence of tissue like the lining of the womb, outside of the womb, most commonly within the pelvis, but it can be found even within the thorax within scars, such as caesarean section scars. And within the pelvis, there are three subtypes. So if you look at this cross section through the body here, this is the pubic bone, the anterior abdominal wall, this is the bladder, the womb and the rectum at the back here. The first subtype which is the commonest subtype is called superficial peritoneal disease. And this is where you see deposits of endometriosis so called lesions on the peritoneal cavity, and you can just make these out here, are often blue/black in colour, or they can be red or white in appearance. The next subtype is deep disease it used to be called deeply infiltrating disease. And this subtype forms these nodules. And you can see an example of a nodule here. This is an image taken within the pelvis. This is the womb, the uterus, and this is the rectum at the back, and you can see this nasty looking nodule sitting here. This is an MRI scan image. This is the womb here, the rectum at the back and the nodules just sitting here on the MRI scan. And then the last pelvic subtype of endometriosis is a variant or cystic disease, so called endometrioma, and these endometrioma may look like this here nasty looking cystic structures, which has this what we call chocolate cystic appearance because of the altered blood within the cysts, and you can see an ultrasound image here of an endometrioma. But endometriosis is much more than a disease of the womb because the problem with endometriosis is the symptoms that are presents with. As Fiona said, it presents with often with really debilitating pain and pain and different forms. The pain classically often comes or is worse around menstruation but people can have pelvic pain outside of menstruation, pain with sexual intercourse, pain, passing urine pain, opening the bowels. It can also be associated with heavy bleeding, and other types of bowel symptoms. It can be associated with difficulty getting pregnant around a third of patients who have endometriosis will have trouble conceiving. And also it can be associated with fatigue and disorders of moods such as depression.

Professor Andrew Horne FRSE 8:08
How is endometriosis diagnosed? I’ve shown you some some imaging pictures. And certainly endometrioma or cystic disease as you can imagine, because of its appearance can be quite easily diagnosed, often on an off same scan or an MRI scan. But deep disease and peritoneal disease because it’s the deposits are small, can only be diagnosed by surgery by diagnostic laparoscopy by keyhole surgery. And this challenge that we have in diagnosing the condition the fact that we don’t have a blood test or a urine test or some simple way of diagnosing the condition has led to this awful delay that we hear about within the place whereby patients who present with symptoms often don’t receive a diagnosis for an average of seven to nine years. And this is a bigger in the UK, but it’s similar across the world. And it’s compounded by a lack of awareness around the condition and the fact that the condition can overlap in terms of its symptoms with other chronic pain conditions. How do we manage endometriosis? Well, we largely manage it with medication, medication that acts upon the ovaries and stops the ovaries producing oestrogen because we know that oestrogen is our driver for endometriosis. And the medication that we give is in the form of hormones. And these hormones can be given as tablets as injections they can be given through a coil or through an implant. But the problem with these medications is if they do work, they only work when they’re being taken. And they also have side effects. And of course they’re like hormones. They’re their contraceptive. And this is a population of patients who maybe want to have children don’t want to take a hormone which stops them from having children. The other way Endometriosis can be treated is by surgery. And there are a number of different ways of removing or treating endometriosis, we can cut out the disease that can be burnt away by diathermy. By laser. And there’s lots of discussion about which of these approaches is the best approach. And the short answer is, we still don’t really know. And again, the problem with surgery is that it doesn’t always cure the condition, it doesn’t always take away the symptoms. And there’s a high number of patients who have surgery, who then come back with symptoms later, down the line anything up to 50% within five years. So the big problem that we have, or certainly I have as a clinician with managing endometriosis is that we need better treatments we need. Ultimately, we would like to find a cure for endometriosis, but we need better ways of predicting which of the treatments that we have available will be a benefit to patients. But we also need treatments which aren’t hormonal and which don’t have side effects. And we also need better ways of diagnosing the condition. And I’d now like to hand over to my colleague, Philippa Saunders, who’s going to talk about some of the research that we’re doing on endometriosis.

Professor Philippa Saunders FRSE 11:23
Thank you very much, Andrew. And can I just say what a great personal pleasure is to have this opportunity to share some of our research vision with you. So it’s probably about more than a dozen years ago now. Andrew and I were discussing the really inadequate opportunities for different types of therapy for women with endometriosis. And we decided that the way forward was to really pool our resources and intellectual effort and bring onboard as many of our different colleagues as possible, so that we could form an interdisciplinary approach. And to do this, we formed the EXPPECT Centre at the University of Edinburgh, and have to say it’s been a very productive and interesting time. And today, I have the opportunity, just a few slides, to share some of the progress that we have made before we get a chance to answer all your questions. So we felt that there was a clear need to have an agenda for change. And there were a number of things on our agenda. So the first of these that was clearly there was an unacceptable delay. In diagnosis, we’ve heard Fiona’s story. And this is something that we’ve seen mirrored in so many other individuals that we talk to. And we felt that we had to look at this in a different way than usual. And firstly, we need to raise a lot more awareness. And of course, this event today, with so many people participating is one of those activities, we have made a lot of use of social media. And as you’ve heard Andrew’s written an excellent book. There’s also been a lot of work behind the scenes to improve the education of healthcare professionals, and recognise that there’s an incredibly important role for nurses and GPS, who probably are those people who most immediately encounter someone who might be suffering really debilitating pain. We and others are putting a huge amount of effort into developing new blood tests using genetic markers. And we’ve been doing some really interesting work with a group in Singapore on metabolites, and ever optimistic, I think this is going to be less than 10 years before we get a really good blood test. And we’re pressing on with that. So today, I want to talk with you about a couple of things where we have made some progress. And one of these is in developing medical therapies for pain that don’t affect hormones. And the second thing I want to share with you is the work we’ve been doing with patients and others to develop a much more holistic approach so that there are non medical options for people to control their symptoms. And these have included efforts on physical therapy, acupuncture and pain psychology. But today, I’m going to talk to you about two new projects, which were just starting this autumn, one using wearable tech, and another one where we’re focusing on diet, and which we’re happy to talk to you further about. So the first sort of small story is one where by working together, we have really made some what I believe has been outstanding progress. So the work started when we were fortunate to use cells and samples from women who have endometriosis, and very generously donated these samples at the time of surgery. We took these to the lab and we studied them intensively. And we discovered that they had a particular ability to make a fat called lactate. Now we were really excited by this because lactate can increase the growth of cells which form lesions and has been implicated in a metabolic change that we often see in cells that become slightly abnormal, and it’s been called the warburg syndrome.

Professor Philippa Saunders FRSE 15:09
So we took this information, and we looked for drugs that could reduce lactate production, because we knew that they must exist. And this is part of a wider effort we’re putting into what we call drug repurposing. If you talk to people in the pharmaceutical industry as we do, it may take 25 years to develop a drug for a particular disorder. And I for one, think this is a frustrating and ridiculously long period. So we look for drugs that we can take from other conditions, and we can repurpose them for endometriosis care, we have a whole pipeline of these. So one we identify was called dichloroacetate. The good news was it had been used for 30 years to reduce lactating patients, it was already approved, it was available. So where we are now as we had lots of positive tests using the DCA in the laboratory, where we looked to see if it was likely to be useful. And I’m delighted to say that Andrew and his colleagues have now got a preliminary clinical trial giving DCA 230 women with endometriosis. So that’s sort of showing you right from the samples from a patient right through the intensive work and oratory to clinical trial. And this is our sort of map for these kinds of activities. But we need other approaches. So why not look to different ways of approaching the treatment of endometriosis by gathering data from the patients which we can then adapt and use and share with them so that they can better predict when their symptoms might get worse. And we can use it to assess symptom management. And for this, we’ve turned to colleagues in the Usher Institute, who have great expertise in using these kind of wearable tech. Now, you and I may all have a sort of smartwatch. But these are special tech devices that will allow us to download the data. So they’re not, they’re not going to tell you the time. But they’re going to record your physical activity, whether your sleeps disturbed, and they might help us predict when you might have a flare. And we’re starting a new PhD project on this with a very talented student, just this September. And the idea is that a patient might have a smart device, they would download it into an app that would allow them to better manage their symptoms. And the other big hot topic.

Professor Philippa Saunders FRSE 17:34
And I have to say really hot topic in pain management at the moment is diet, I can hardly open up a journal at the moment without somebody telling me that by modifying diet and looking at the diet, we might be able to improve pain management. And at the heart of this is, of course, what we’ve all heard about the gut microbiome. So these are all the bugs in your gut. And they produce a lot of different factors that influence your body, how it behaves inflammation in your body. And there’s now something called the gut brain access, which when I first heard of it completely blew my mind. But apparently, and there’s great evidence for this, what you eat influences your microbiome, your microbiome makes factors and this can affect your pain perceived at the level of the brain. Now, we know many patients have modified their diet over the years. And in fact, some of them have a very successful diet plan. But what we as scientists looking for is really the evidence so that we can give the best possible information. And of course, we know migraines, a prime example were diet can influential your pain perception. So these are the areas that we’re putting new energy into. These are the areas where we’re engaging with our patients and supporters. And I’m very pleased to say that this is also going to be the subject of a PhD project, and that we’ve been really delighted to receive all kinds of support help and advice from our local patient group, the West Logan Endo warriors. So we’re very much looking forward to that. Again, another really talented student is joining us in September. So I think that’s enough for me, Andrew and I both really looking forward to getting your questions. This is a wordle from a patient engagement activity we did and you can see that it has all the key things that I’ve been talking about in it. But rest assured we’re leaving no stone unturned to improve the care of patients who show up in Andrew’s clinic. Thank you.

Fiona Stalker 19:38
Thank you so much. Philippa that was an absolutely fascinating, an incredible amount of work going on which I think will give a lot of people who are listening to this some hope and what a plan is today is for me to just have a chat with Philippa and Andrew and then throw the floor open to you guys. I see there’s some questions already coming in. If you want to put your name on it fine. If you don’t, it’s absolutely no problem whatsoever, but I can then fuel the questions and put them to Andrew and Philippa. Just to start off with, so we’ll do maybe 10 minutes of this, hopefully leave half an hour, 25 minutes for you guys to ask questions. And it’s, it’s a unique opportunity. So please do use it. And I suppose maybe Philipaa, first of all, one for you, let’s just get some of the basics drilled down. What causes Endo? What do we know about what causes Endo?

Professor Philippa Saunders FRSE 20:25
Yes, well, if the answer to that was really simple, we will be much further on. I mean, it’s, it’s interesting, and at the heart of this challenge is why would and as a biologist, this, you know, really surprises me, why would a small piece of tissue that ends up in this in the wrong place, in other words, outside the uterus cause so much problem. And it’s a complicated story, we’ve gone looking for genes that might be modified, we know hormones have an effect. And at the heart of it, we think there are changes in the cells that get shed from the womb, such that they end up surviving and thriving in places where they shouldn’t be. So they get stuck to the peritoneal wall, they develop new blood supply, they develop nerves, and they become inflamed. I personally think there’s a huge opportunity to do a lot more in the field of inflammation around why these lesions I mean that they, you know, some of those nodules, you know, and you’ve seen the cysts, they can be sizable, but some of these lesions are really small. And when we’ve looked at patient reported outcomes, comparing the size of the lesion that Andrew will identify and how severe the pain are, there’s not a very good correlation. But there is a really interesting new idea out there called nociplastic pain, which seems to involve an integration of inflammatory processes with brain signalling. And that’s where I think we’re going to have to look for more what’s going on?

Fiona Stalker 22:00
And is this what causes the pain Philippa?

Professor Philippa Saunders FRSE 22:03
Yeah, so pain. So pain is something that is a brain, I mean, it’s a, you know, it’s something that involves your brain, you’ve got to perceive it. So you might have a nerve, but it’s still got to involve a brain signal to a certain part of the brain. And, you know, Andrew can fill in more gaps. They’ve done some very interesting brain imaging as well. Pain is a complicated business, and there’s different types of pain. And visceral pain is extremely complicated, because where the inflammation might occur, you might feel you know, that’s a tender part, or it’s like pain, or you might feel increased sensitivity on your hands. So it’s quite an interesting thing. Andrew might want to add something about those interesting brain imaging things he’s done.

Professor Andrew Horne FRSE 22:49
Thanks Philippa. So one of the problems that we see is that anybody who has a chronic pain condition whether that be endometriosis with time, if that condition is untreated, it then becomes as well a disease as Philippa said of the nervous system. And you see changes within the central nervous system within the brain. And there have been some some studies, very nice studies performed in the States that have looked at this the cerebral cortex, the sort of bigger part of the white, white part of the brain, as it were. And there are changes there in terms of of the volume of the cortex in patients who have endometriosis and have pain. We’ve also been looking at changes in signalling in the brain. And we see differences in patients with with and without endometriosis. So, as Philippa said, it’s not just about trying to work out how to best manage the lesions. It’s a much bigger problem than that, because the consequences of the lesions and we don’t know how we get there are much more far wide ranging and involve the nervous system as well.

Fiona Stalker 23:59
I want to ask you about infertility and a lot of the stories that I hear and I have colleagues who are going through this is is the is the impact on fertility. Philippa, why can it lead to infertility?

Professor Philippa Saunders FRSE 24:14
Yeah, so one of the things to really emphasise about endometriosis is, as Andrew has said, there’s three main subtypes. And actually, if you look at the impact on the individual, they might have a mixture, but probably these are three different things. So if we take the ovarian endometrioma, obviously, you’ve got an impact on the ovaries and you need really good functioning ovaries is to get pregnant. With a peritoneal disease, it’s slightly less obvious, and you know, but we do believe it again goes back to the fact that the ovary is sitting in an environment within the pelvis, that’s probably suboptimal. So it may be a bit more inflamed, you might also get some blockages to the fallopian tube. And then with the deep nodular disease, you’re going to have deformation such that things really are not maybe where they want to be, you know, optimally. So again, it’s complicated, it may be that the pro inflammatory environment that we see in the pelvis is, is also having an impact. But again, physical problems may also get in the way.

Fiona Stalker 25:29
Okay, I’m not going to rattle through some of my questions, I see that a huge amount of questions coming in. So I’ll take maybe another five minutes of our chat and then I’ll pass on the floor. Keep your questions coming in. Andrew just explained to us, why are there huge delays in diagnosis, I think the average at the moment is eight and a half years, which to people that don’t know much about that seems incredible.

Professor Andrew Horne FRSE 25:48
Yeah, no, I mean, it’s, it’s, it’s quite shocking. And there’s a drive by the Scottish Government to try and reduce these times. Nicola Sturgeon herself has said that that’s going to be one of the outcomes of her next terms, government, which is fantastic. There’s also drives by organisations like Endometriosis UK, and the RCOG, to try and reduce these times. So I hope, I hope, first of all, I hope it will change. I think there are a number of issues, I touched upon them a little in my introduction. The first is around, as you know, lack of awareness. I mean, why don’t more people know about this condition? Why haven’t people heard about it. And I think that’s then led to people not seeking help. And then also possibly also misinformation. So you might just be told that the symptoms run in your family, you know, this is just normal pain that people have to put up with. And then there’s been a problem as well with even trying to reach the right medical practitioner. Not every practitioner knows, or did know enough about endometriosis knew when to refer. And I think a lot of effort has been put into us educating each other as clinicians. But then there’s the problem as well, as I said that endometriosis symptoms can crossover with other conditions like irritable bowel syndrome, like painful bladder syndrome. So it’s not easy to diagnose if someone presents to you and talks about their symptoms, we talk about red flags, symptoms being symptoms, where there’s a cyclical nature to the pain or presenting complaint. But then the big, big problem that Philippa has alluded to is, is the lack of a test. So unlike other conditions, where you can maybe go in and have a blood test and be told the next day or even the same day, if you have a condition. You can’t do that with endometriosis. It might be picked up on the scan, but the majority of patients have normal scans, and then you have to go on and have invasive surgery. And they often have to wait for the surgery or maybe put off having the surgery because it’s risky. It involves a general anaesthetic. So I think there’s a whole range of reasons but probably the biggest stumbling block is the test. I think if there was a simple test, it would make things a lot easier.

Fiona Stalker 28:12
I’m going to ask you very shortly Philippa but diet because that’s a question I see coming up in the forums a lot. And that’s really interesting, but just briefly under what are the current treatments available for endometriosis.

Professor Andrew Horne FRSE 28:25
So it’s really quite limited. So standard analgesics painkillers. So for example, what we talked about non steroidal drugs. So anti inflammatory painkillers like ibuprofen are helpful in the first instance. And then in terms of medical treatments, it’s all hormone treatments, anything that stops the ovaries producing oestrogen, and that can be the combined oral contraceptive pill that can be a progestogen and that can be given in many different ways as I alluded to earlier, or we can give drugs which cause a temporary menopause and these can be monthly injections which are given with hormone replacement therapy. All of these drugs as I see have have side effects from them, all of them only work when you’re taking them so they’re not a cure sadly. And you know, and they, they don’t work for everybody, which is the problem. And then we have surgery and surgery can be difficult, it can be challenging. So you need to ensure that the surgery is done by by the right person in the right place. And we have surgical centres in the UK, which are accredited, which is a big advantage, I think. So if you have what we call complex endometriosis, and that doesn’t mean complex as in more symptoms than other people means more complex technically complex in terms of the surgery then you should get referred to a centre but the problem with surgery is first of all it doesn’t always seem to work. And then if it does work, people seem to have a recurrence of their symptoms, anything as high as 50% within five years.

Fiona Stalker 30:10
Really? That’s, that’s quite a staggering figure, isn’t it? I didn’t realise it was that high. And Philippa, but just before we move to the audience questions, so much to speak about. But in terms of the diet, that’s really fascinating, because I think that’s something that people feel they can have some sort of control over and they can do something that might help alleviate the symptoms. Tell me about that.

Professor Philippa Saunders FRSE 30:29
Yeah, so can I say that the motivation for really focusing on the diet did arise from talking to people, particularly, we gave a talk at the Science Festival a few years ago, and actually, for me, is the feedback from the people who are affected, that really influences what we do. So the diet story is a really interesting one. In fact, everyone, you know, if you talk to 10 people, they each sort of have 10 ideas about the diet. And there’s been quite a few things kicking around about how you shouldn’t eat red meat and other things like that. So first off, I’ve seen some of the stories that come through in the chat sort of saying about the FODMAP diet, which is effectively a massive elimination and then possible reintroduction. So the first thing to say about elimination diets is you need to be extremely careful if you eliminate things which take away essential nutrients, vitamins, you know, all kinds of, you know, factors that you need to get in your diet. So you need to be very careful not to eliminate everything. My daughter is a dietician, and when she hears about this elimination diet, she gets very nervous and tells people to start taking multivitamins, cheap multivitamin, you don’t need expensive ones. So the second thing to say is, we have lacked really hard evidence about what does and doesn’t work on diet. But within the last month, I’ve read this amazing paper in one of the leading journals, which I think nails down some good principles. So one of the in this paper, which was in cell, which is like the biggest journal of all time, as far as we’re concerned, we love it. There was a really good study done by people in America. So they were looking at this inflammatory problem. And they said, they asked the question, if we take two groups of people and bear in mind, these are Americans not on great diets, as it were, but they were on diets which had lots of meat in them and everything. And we put them on a diet, a new diet for a month. And then we look at their inflammation in their guts and ask have we made a difference? It did two types of diet. They did a high fibre diet, loads and loads of fibre. And they did another diet, which was loads and loads of fermented foods. Now when I first read it, I thought they were going to be on this kimchi stuff, which is well, I don’t know how you feel about it, but I always found it a little bit grim. Anyway, mostly they run, you know, yoghurts. So they put these two groups of people it was a completely randomised thing. It was well done, well controlled, and they did massive, massive, massive, massive analysis, I mean, eight months solid. And the take home message from this was the fibre made a bit of difference. The fermented, the yoghurts, the bio active yoghurts made a bigger difference to their inflammation. Now, this wasn’t a pain study. But if we go pain and inflammation are linked, this made a big difference. So what was interesting was, it took a while for it to happen. And there were some people where it made no difference, which goes back to we need better evidence, certainly I’ve discussed with the people who we’re going to do our project with using the fermented food approach. And I think everybody needs a healthy diet and make sure you don’t eliminate everything and stop taking your vitamins, because that will make you worse. So you know, these are the sort of take home messages on diet. And certainly the feedback I’ve had is there’s no one diet that everybody has identified. So what we’re looking for is the evidence in the next couple of years, with talking to the patients, doing the surveys, doing the analysis properly, we’re going to have an answer is what I’m hoping for.

Fiona Stalker 33:56
That’s fascinating. I think people are so desperate for that

Professor Philippa Saunders FRSE 33:58
We’ll be back to tell you all about it in a couple of years time.

Fiona Stalker 34:01
We’ll be here we promise you that that’s really, really interesting. And I tell you, what I’m going to do is leave a couple of minutes at the end to ask you the question about what your kind of vision for future care of endometriosis is because I do want to jump into the questions. We’ve got so many of them. I’ll keep them anonymous. I think it’s easier sometimes. And I guess you guys can decide who’s best to answer this. And first of all, I’ll throw a couple of at one time. This one says is there any evidence that endometriosis gets better or worse with the menopause? Guys, I could have written that myself actually. And can an endometrioma resolve on its own with no surgery who wants to take them so menopause? What’s the effect? The second one can it resolve itself on its own?

Professor Andrew Horne FRSE 34:45
Shall I take them

Professor Philippa Saunders FRSE 34:46
Go for Andrew go for it. I can talk about menopause as well.

Professor Andrew Horne FRSE 34:51
So, because we think endometriosis is driven by oestrogen. Theoretically, it should get better after the menopause. And for the majority of patients, it does seem to get better. But we know that patients don’t get better. And we don’t know whether it’s because they’ve got a different type of endometriosis that maybe is stimulated by something else, or what we don’t. What we’re increasingly wondering is that potentially, the endometriosis has maybe been by being treated surgically or by the drug treatments, somehow, then it’s causing damage within the pelvis or within the nervous system that we’re not treating effectively as it were. So I think the short answer is yes, generally, it should get better before the menopause, but there’s a pocket of people in whom it doesn’t. And sadly for these people, we find it very difficult to manage in the clinical setting. With regards to the question about an endometrioma on getting better. We have very little data or information about what we talked about the natural history of endometriosis so because you require surgery to look at it. You can scan people with with endometrioma, well, but there’s still quite an invasive process to follow them up. We don’t know whether these these cysts will just resolve by themselves. What we do know from inflammation from one of the animals that spontaneously develops endometriosis, which is the baboon is that if you monitor these animals, sometimes the endometriosis gets better, and sometimes it doesn’t. And sometimes it seems to get worse. So I think the problem with an endometrioma is if it’s detected, it’s better to be treated and to be removed. For the reason that often it does cause symptoms. For the second reason that we don’t know if it will just get better by itself. But for the third reason that we want to often try and get a tissue diagnosis from the cyst. So if someone has a cyst, we want to be absolutely certain. It’s endometriosis. And it’s not something more sinister. So generally we advocate treating.

Fiona Stalker 37:14
I’m going to keep going through the questions of that screen. I had no idea but baboons by the way, solidarity with baboons. I’ve had four laparoscopic surgeries to remove severe endometriosis does it grow back or are lesions missed, essentially, I’ve got a couple of friends in this situation as well, they’ve had multiple surgeries. But it keeps coming back.

Professor Andrew Horne FRSE 37:35
So Philippa and I can be both given opinion on this, I’ll maybe just start then hand over tp Philippa. So I think it can sometimes get missed. And there’s a lot of work to educate clinicians. We’re involved in Edinburgh in this new online course to make sure that people are diagnosing it correctly. And by diagnosing it correctly, then you are going to then be able to treat it properly and identify it properly. So I think that is is an aspect, but I think it does, it does come back. I mean, we with colleagues now we often operate together to make absolutely certain that we’re providing people with the best possible operation. We take photographs, we take videos. And then sadly, a few years later, patients come back with endometriosis in different places. And you know, we can look back at the photographs and back at the pictures and why that happens. We don’t fully understand. But yeah, I think I think that that would be my answer the question I don’t Philippa if you’ve got comments.

Professor Philippa Saunders FRSE 38:46
Well, I think the answer is that if people continue to menstruate, there’s always a risk that some of the material will escape from the uterus, and maybe just can return to this menopause hormone course. And I think also, it’s relevant to another question that I’ve seen come in about the role for androgen, particularly in trans men. So one of the really sort of slightly disturbing but interesting from a, you know, the point of view of being able to target therapy is the realisation that these rather sneaky lesions also seem to change their ability to metabolise steroids. So, if we take the instance of menopause, where you know, the ovarian steroids are finished, or have been suppressed by a treatment, actually, the lesion develops, has developed the ability to make its own steroid locally, it’s switched on the enzymes to make oestrogen within itself, which is, you know, really annoying, but it’s a good idea that we could target that maybe with a new therapy and of course, this is really relevant to trans men because if you give androgen can get metabolised to oestrogen as well, so we need to look at these therapies that might target these enzymes and some people are using aromatase therapies. And this is you know, another thing in the armorarium where there’s a resistance to this standard therapy. So that’s available to Andrew and his colleagues to treat individuals by targeting the ability of the lesion to make the steroid and that’s one of the areas we’ve been looking at particularly because we think that’s a more localised treatment. But it’s really important that we bear that in mind.

Fiona Stalker 40:19
Can I just ask you this one perhaps related, then this questions come in? Do you see many or any trans men taking testosterone who have endometriosis? Does this present in ways that are notably different from non trans women?

Professor Philippa Saunders FRSE 40:32
I think Andrew would have to answer that, because he’s of seeing the patient?

Professor Andrew Horne FRSE 40:39
Yes, I do have trans patients who present with endometriosis, I think it’s difficult to see whether the hormones that they’re taking are contributing to the disease and the symptoms themselves. Just again, from the very point of views, you often don’t necessarily have a starting point is to compare that to I think the interesting thing about androgens and I will pass back to Phillippa because this is her area of expertise is that they are a potential treatment target. So I think there’s quite a lot that we can learn from working with trans patients to understand the disease itself and Phillippa I’ll pass back to you.

Professor Philippa Saunders FRSE 41:23
It’s an area we’re particularly interested in particularly the role of androgen not just thinking oestrogen, but about androgen both as a pro hormone, but also as a target because the receptors for antigens and they’re in the lesions, but I think we should, maybe there’s so many questions we can return.

Fiona Stalker 41:42
Sure. And a couple of diet ones, I think these for you Philippa. Where has it gone, there’s so many questions coming in. I’m not sure what this, the FODMAP diet a reliable way to manage symptoms. Second ones come in, I have several GPS tell me there is no correlation between diet and endometriosis pain. But by following the FOD map is that how you call it, I have found this greatly reduces my flare ups and pain symptoms.

Professor Philippa Saunders FRSE 42:08
So I’m really pleased to hear that the diet has made a difference to the symptoms. So the FODMAP diet is one of those diets where you start with eliminating a lot of things. And there’s a sort of if you look on the web, there’s this sort of big list of bad things and a sort of smaller list of good things. When I look at it, it’s it’s quite a healthy diet. And I think anything that’s a healthy diet with a decent amount of fibre. And, you know, good transit gut times it is not a bad thing. I think as I did say earlier, though, the one thing to be really clear about is don’t end up with a diet that’s so restricted that you’re really going to lose some of the essential nutrients. If you’re on a very limited if you’ve if you’ve really narrowed your diet down, it’s working for you. You know, that’s fantastic. It might not work for your colleague or your neighbour or anybody else. But if it works for you, that’s great. If you’ve eliminated a lot of different foods, I would still advocate maybe taking a multivitamin, just you know, go down to the supermarket get yourself a multivitamin. I think Andrew also wants to make a comment.

Fiona Stalker 43:11
Okay, Andrew.

Professor Andrew Horne FRSE 43:12
It was just to pick up on the comment about the GP saying that diet is not related to endometriosis. I mean, you’ve probably gathered from what Phillippa has said, I think there is absolutely a role for diet in the management of endometriosis. I think the problem is that we don’t fully understand and we can’t just give dietary recommendations, but I always say to patients, because quite often patients will come to me and say, I’ve taken this out of my diet, my symptoms are much better. So you need to experiment within reason, as Phillippa said, with your diet, and hopefully by gathering lots and lots of informations we’re trying to do in our studies over the next few years, one day we’ll be able to give people better information about what specific diets work best for who endometriosis.

Fiona Stalker 43:57
Okay, Andrew, perhaps this one’s for you does an endometrioma need to be excised, or can it be treated with ablation? And could you explain what that means to to to the people that don’t know that I need that explained? I think myself.

Professor Andrew Horne FRSE 44:11
So an endometrioma is a cyst containing altered blood, which leaves this kind of chocolate coloured blood and the cyst has a wall within it. And the recommendation is that the cyst wall should be excised. The problem is that there the ovary is usually it’s within the ovary. So the ovary has this very rich blood supply. And so you have to be careful for two reasons. One, if you try and completely sometimes when you’re trying to completely excise it, you can cause lots of bleeding and that could potentially lead to losing the ovary because you can’t stop the bleeding. So occasionally, you have to ablate which means rather than cutting it out, trying to destroy bits of the cyst wall, but usually what you’re trying to do is take as much of this wall away as you can And then if you have to destroy a little bit of tissue left at the bottom, and the reason you do that is to try and prevent it from coming back. The other problem apart from the bleeding that you have is, obviously, you don’t want to take away too much normal ovarian tissue, so it’s all stuck together. And when you’re stripping it all out, you can end up taking away normal tissue. So again, in those situations, if you think you’re going to end up, you know, affecting the fertility of the patient, by taking away lots of ovarian tissue, you might ablate part of it, but usually you would set out to try and strip away the cyst wall as much as possible to try and prevent it from coming back.

Fiona Stalker 45:39
Okay, a couple of questions on pain. For either of you, does pain correlate with severity of disease? Are you more likely to have deep Endo, with more severe pain symptoms? And there’s also one thing, what are the best painkillers to use? And or has there been any developments in painkillers, pain relief?

Professor Andrew Horne FRSE 45:59
Philippa, do you want to start with the first question?

Professor Philippa Saunders FRSE 46:02
I was busy typing an answer.

Professor Andrew Horne FRSE 46:06
I can answer it. So there isn’t, there doesn’t seem to be a correlation between the extent of pain with either the site of the disease so you can have a lot of pain on the left, but your endometriosis can be on the right hand side. And we think that’s due to the complex nature of the nerve supply in the pelvis, but also the type of disease or the extent of disease. So you might have a very small endometriosis lesion, which causes horrific amounts of pain, or they’re even patients that sometimes present to us that seem to have endometriosis all over the pelvis and don’t seem to realise that they’ve had it. So there’s just this really strange lack of correlation. In terms of painkillers. So as I said, the standard painkiller that people people use is an anti inflammatory painkiller. But we’ve been looking at different types of painkillers, painkillers that work on the on the central nervous system. Drugs like tricyclic antidepressants like amitriptyline, nortriptyline, and duloxetine. All are effective in other chronic pain conditions. So we sometimes use them in endometriosis. And then there are drugs called gabapentinoids, which are actually originally anticonvulsants like Gabapentin and pregabalin, which we also use and can be effective often in combination with things like surgery or hormone treatments. And then, obviously, opiates are used to treat endometriosis symptoms. But there’s clearly a lot of concern at the moment because of dependency on opiates, particularly in the States. And this is happening in the UK as well to try and minimalize the amount of opiates that we’re prescribing and try and use some of these other treatments as well. But there is definitely a place for them if other analgesics aren’t effective.

Fiona Stalker 47:58
There’s so many questions that sorry, Philip, do you wants to?

Professor Philippa Saunders FRSE 48:02
One brief thing is, we had a really interesting international meeting recently and a very inspiring talk from a clinician in Israel. And there he’s able to prescribe cannabinoids. And the advantage of cannabinoids are that they can hit both inflammation and pain pathways. So there’s quite a lot of work we’ve done some ourselves and tried to come up with cannabis cannabis cannabinoid derivatives that don’t cause a high but would have an effect on the pain. I think that’s a really important area.

Fiona Stalker 48:34
That’s interesting, because there’s a question about that. I’ve seen discussions about the benefits of medical cannabis for inflammation, pain management, is this something you’ve considered as part of your research

Professor Philippa Saunders FRSE 48:43
Certainly is something we consider as part of our research, we did test out a drug that had been discontinued by one of the pharma companies and it did look extremely promising. Unfortunately, they dropped it. But we are still seeking funding in that area and talking to this colleague in Israel. He said his real experience in his clinic was that it could be very effective. So I think it’s something we should lobby for more and get more funding.

Fiona Stalker 49:08
A simple one hopefully, Pihlippa at what age does endometriosis start?

Professor Philippa Saunders FRSE 49:14

Fiona Stalker 49:15
Maybe not simple.

Professor Philippa Saunders FRSE 49:16
Well, it’s when does it start and when do people get symptoms? So obviously, any sort of shedding material into the pelvis could result in a lesion. There’s a body of opinion that it might start even in infancy, but by and large, as Andrew said, given the hormone dependency, it tends to correlate with people getting their first period and then they get some pain. And then they might go to the clinician and then they might have that eight year wait for a diagnosis, I think as Andrew will agree. So we think it’s there’s there’s a real need to do a lot more work in adolescence and really raise I mean, I’m particularly passionate about the idea we must raise awareness in young people so that they don’t suffer and that we need to raise awareness with the nurses who are seeing young women for contraception and other things so that they can honorarium.

Fiona Stalker 50:09
There’s some this is kind of question I see all the time. My daughter has endometriosis. She’s had it for 15 years, which has caused no end of problems. What can she do to help herself there’s a perhaps on linked one to link it in someone’s asking how physiotherapy can perhaps help and what should be concentrated on I’ve just got to say very briefly, exercise has always, always helped me when the pain has been horrific. If I’ve gone an exercise, it has always made a difference. Perhaps it’s been the endorphins, I don’t know. But it’s certainly it’s helped me.

Professor Philippa Saunders FRSE 50:41
I think Andrew should take that because we do think there’s a really strong role for physiotherapy.

Fiona Stalker 50:47
That’s interesting.

Professor Andrew Horne FRSE 50:47
I mean, I think I think the first thing is, is about support as well. I mean, I think the first thing is to make sure that you contact, Endometriosis UK contact any local support groups, because I think that’s really important. And that will then help you identify different treatments. I think you’re right, I think sometimes exercise can be helpful though it can be very difficult to exercise if you’re in pain all the time. So I’m always a bit cautious about telling people to to exercise. Physiotherapy we are very lucky in Edinburgh, we’ve got a pelvic pain physiotherapist, who can help with exercises. And that’s largely because we think that if you’ve had pain from endometriosis for a long time, your pelvic floor becomes very tense, and it needs to be relaxed. So it’s the opposite of what happens. You know, if you have problems with your bladder, and you get older, you want to strengthen the pelvic floor. But here we want to relax it. We also offer our acupuncture in Edinburgh, which can be helpful. So there’s other complementary therapies, which I think are appropriate. And then part and parcel that the comment I made about support, we also have a pain psychologist who works with us, and we have a pelvic pain management programme. And so things like mindfulness can be helpful. She can help with pacing, ways of kind of responding to flare, so it’s not going to be it’s not that she’s able to provide a cure or management in the kind of traditional form, but it’s very much supportive in living with a chronic condition like endometriosis.

Fiona Stalker 52:25
A good point, Andrew, because I think sometimes what’s overlooked, and perhaps even underestimated is the mental health impacts of having endometriosis, and having that chronic pain, you know, as part of your life and I can see the effect on people. I think the fact that you have a psychologist at your centre is a fantastic thing. There’s a couple of questions that there’s more than a couple on fertility. I think this is a theme that comes through can I just read a couple loads? It’s unclear whether surgery for my endometriosis will help or hinder my fertility because of potential loss of healthy tissue during surgery. Would you recommend removing endometrioma to improve fertility, or leaving them alone in case hormonal therapy helps someone’s come off the back of it saying yes, me too. There’s a lot of questions about fertility and endometriosis. Perhaps one for you, Andrew.

Professor Andrew Horne FRSE 53:13
Yeah, so it’s a really good question. And it’s a question, but I probably don’t know the answer to and it’s something that we are, as a group in Aberdeen are trying to get funding to do a trial where they’re going to randomise people to either surgically removing the endometrioma versus not. And it is because removing it can lead to, as you say, removal of normal healthy tissue. But on the other hand, you know, that removing that sort of source of inflammation as Philippa talked about which will have an impact potentially on the eggs, the sperm, the developing embryo. So there’s this balance between trying to work out what’s best, but the problem is we don’t we don’t fully know the answer. I think the important thing is if you have an endometrioma, infertility is an issue that you speak to your gynaecologist and that your gynaecologist also liaises with fertility experts and that’s something we tend to do whenever we have patients with fertility issues in Edinburgh and trying workout and trying to individualise the care for that patient.

Fiona Stalker 54:18
And this is an interesting one and perhaps you could say something, either of you about this, Andrew, but something I didn’t really understand until I spoke to you. Oh, gosh, a year ago, so my mother needed to remove a chocolate cyst from the ovary through surgery. Am I more susceptible to having endometriosis? So it’s that hereditary question, Andrew.

Professor Andrew Horne FRSE 54:39
I’ll pass on Phillippa has just written an article about this

Fiona Stalker 54:44

Professor Philippa Saunders FRSE 54:46
The thing to say is we’re doing, we and others are putting massive amounts of effort into trying to work out what the sort of genetic contribution is. So when you look at the data, there is clearly a heritable sort of effect. You know, someone’s mother has endometriosis, they probably are at increased risk. But other factors come into play as well. So it’s not definite. And that’s because it’s a complex multifactorial disease. It’s not like, take breast cancer, if you’ve got a braca mutation you are what 50% more likely, we now think that there’s a whole complex of changes that might be mild and multi genes. And it probably raises your chances of getting it by five to 10%. But no more. But not that easy link between the two. Now, I mean, clearly, it’s a shame that her mother had a chocolate cyst. But that doesn’t mean to say that that individual is definitely going to end up with the same type of endometriosis, I think we have to be reassuring and saying that, that isn’t a given it this is really not a genetically predetermined. If you’ve got this mutation, you’re definitely going to get it. It’s much more complicated than that. And we think we’ll end up with a panel, a blood test with like half a dozen things that and then we’ll say your risk is maybe 10% higher. So that’s where I think we’re at at the moment.

Fiona Stalker 56:14
Okay, and probably to fit in maybe just one more, because I want you guys to kind of sum up about the future if that’s okay. I’m so sorry, I’ve not a chance to get through all your questions. Let me see I have endometriosis affecting the bowel. I also have many food intolerances, perhaps one for you Philippa. And again, it might be something you’re looking at. I wonder if you’ve ever found a connection between food intolerances and endometriosis?

Professor Philippa Saunders FRSE 56:39
I think that’s an absolutely fantastic question. I think it all goes back to the inflammatory side of things. And one of the things we have noticed is, you know, we have people who have, you’re more likely to have endometriosis if you have asthma you’re more likely to have it if you have irritable bowel syndrome. So there’s a whole inflammatory thing going on there, the food intolerances will be a bit of a similar thing. I think it’s all tied up with your body geared up really reacting against any slight insult. And you’re, you probably are primed to suffer a little bit from those kinds of inflammatory insults.

Fiona Stalker 57:21
It’s absolutely fascinating. And listen, I’m very I see the time I just quite like the two of you to have to sum up for us. Where do you think the future lies in endometriosis treatments and diagnosis and research, Andrew do you want to go first?

Professor Andrew Horne FRSE 57:39
I think there are two things that would make a huge difference to me as a clinician and one would be the elusive test of the non invasive blood test. And I think we’re certainly doing a lot of work with University of Singapore and also with an industry partner as well to develop a test. So I’m hopeful that we’ll see that at least during the next five or 10 years. But the second thing for me is, even if we don’t develop a cure quickly, I would really like to be in a position as a clinician to be able to pick a treatment and say to a patient that this treatment will work for them, whether that’s one of the existing treatments that we have already, whether it’s surgery or hormone management, because I know patients will agree with this. So often we’re saying, well, try this treatment, it might work for you. And it might work first time, but I think a lot of patients go round and round, you know until they find a treatment and hopefully they do you find the treatment, whatever works for them. And I think there must be a way to design studies and Phillippa and I are working on this where we can predict which is going to be the best one which is going to have the least side effects, which is going to have the most benefit so that they’re the two areas that I’d like to see us making progress.

Fiona Stalker 58:53
Okay, Philippa,

Professor Philippa Saunders FRSE 58:54
Yes, I completely endorse that. So there’s two things that I want to see I want to see young women being treated seriously and anyone with pain being taken seriously and it being considered as an option and properly investigated. And and I think part of that goes back to us really needing to get stuck into education, not just for the expert clinicians like Andrew but but for the wider healthcare professional group. And particularly the GPS overloaded as they are have a huge role to play. So I think that’s an area where we, we all have to work together. And then I suppose for me, as a scientist, I am completely excited by this gut brain access area. And I want to work with the widest possible group of experts, you know, well beyond my field to really get a grip on this. So you know, we’ve been talking to people who really understand diet and the microbiome and other things. And it’s really by working with people who are not working on endometriosis who know nothing about endometriosis. That I think we’re going to make this this big leap forward. And that’s what we’re open to, we’re open to all and everyone and we want to work particularly in partnership with the patients because they know their bodies best. And they are able to advise us and I found their input, hugely inspiring, frankly.

Fiona Stalker 1:00:12
Both of you before before you go on, sadly, we run out of time we could have filled hours with this. Where’s the best way for people to find out how your work is progressing and how the research is progressing.

Professor Philippa Saunders FRSE 1:00:24
So we do have a website which we endeavour to update, we need to do a lot more there. But you can certainly search for us on the University of Edinburgh website under under the EXPPECT banner.

Fiona Stalker 1:00:36
And I will make sure that I cover whatever is happening in the in the develops you can then you can count on that,

Professor Andrew Horne FRSE 1:00:42
Andrew. We also are both quite active on Twitter, as I know you are Fiona as well. So we we always try and update people on Twitter. I have just joined Instagram, but I’m not very good at it.

Fiona Stalker 1:00:54
Wow. Okay, we’ll leep on there. Listen, I’m so sorry. That’s all we’ve got time for so many of you put in questions, and we could have spent so much longer. So thank you to everyone who has I do apologise that we didn’t get through everyone. And a massive thank you to Professor Philippa Saunders, Professor of reproductive steroids at the University of Edinburgh. And as we were just seeing journalism and an expert on endometriosis. Absolutely. And of course to Andrew Horne professor of gynaecology and reproductive Sciences at the University of Edinburgh. There is some incredibly exciting work going on. It gives me absolute hope. And I think the final thing I would say is, is please do keep speaking about endometriosis do keep talking about your pain, and we need to try and get rid of any of the stigma about women’s health issues. So don’t give up. I know what a struggle it can be. Absolutely no, it can be but my surgery worked. So there if he you know, there is hope. And I think the work that Philippa and Andrew is doing offers a huge amount of hope to everyone. So thank you so much for coming along. And joining this chat. There’s some exciting things happen. And the three of us will let you know about it. I promise you and I will keep talking about lady bits no matter how many times my colleague raises that eyebrows. But thank you so much for your time. I hope you enjoyed this afternoon. Bye bye

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