Dr Louise Newson: This week's podcast is all about endometriosis. I've got with me Evelyn Scott, who's an author and women's health advocate, and she has endometriosis. She's been turned away. She's being gaslit. She's told wrong information. She's suffered herself, but she's a great advocate for others to listen and learn from. Endometriosis and adenomyosis are often poorly understood and inadequately managed conditions. There's loads we need to do. But we need to start by listening to patients. So I hope you learn a lot from this episode. So, endometriosis is still a word that lots of people don't know what it is. Patients, doctors, clinicians, researchers, people really get confused, but it's one in 10 women at least?

Evelyn Scott: Yeah, one in ten, 10% of all women they reckon, which I think is about 176 billion women worldwide.

Dr Louise Newson: It's quite a lot of women, isn't it?

Evelyn Scott: It's an incredible amount of women and it's just as common as diabetes.

Dr Louise Newson: So diabetes has quite a lot of investment in it doesn't it?

Evelyn Scott: So diabetes has proactive care and it has a great pathway to diagnosis, very simple, not invasive and people tend to take it a lot more seriously than a condition like endometriosis which is unfortunately suffers from being a women's only condition.

Dr Louise Newson: It's a problem, isn't it, when it's only women?

Evelyn Scott: Yeah, absolutely. And I think there's, you know, you hear a lot in the communities that if endometriosis affected both genders, we would have a cure by now. And I do think that's an accurate way of looking at it. I think people would rather invest money into research into diseases that affect both genders as opposed to just women, which creates this horrendous lack of knowledge, which means that a lot of women don't know where to turn and a lot medical professionals don't know how to treat it.

Dr Louise Newson: Well, I mean, we've known for years that women haven't been used in medical research. You know, I qualified as a doctor in 1994, and that was the year that women had to start being used in clinical trials. It's quite scary, isn't it?

Evelyn Scott: That's terrifying, but it doesn't surprise me.

Dr Louise Newson: Well, because we're complicated because of our hormones and everything else.

Evelyn Scott: Absolutely. And I don't think people want to necessarily deal with women and hormones.

Dr Louise Newson: It's scary, it's really scary. As a doctor, I used to get really scared if people came with something that I didn't know because I'd think I should know everything, but actually I'm older and wiser now and I'm quite happy to admit to patients, sorry I don't know much about it, but I'll find out and I'll help and I listen to you.

Evelyn Scott: See, I think that's really refreshing to hear. Because one of the things I talk about a lot is wanting that transparency from medical professionals because for years I've been told that there are treatments that work for endometriosis and I've never once had somebody say to me actually we don't know a lot about this disease but I'm willing to work with you to figure out the next steps forward and I think that experience that you talk about would change the landscape for patients.

Dr Louise Newson: It's interesting, isn't it? I mean, you've got endometriosis. And whether, you know, terminology, I think is really important. So are you a patient with endometriosis? Are you a sufferer of endometriosis? Or are you someone that just so happens to have endometriosis? You know, that already puts you into three different boxes. But you are someone with endometriosis, who wants to help others as well, and that is really important. Whenever I read anything about endometriosis in public domain it's always followed with but I've not been listened to.

Evelyn Scott: Yeah. And that is probably a universal experience for every woman with endometriosis, adenomyosis, and conditions like polycystic ovaries as well, and fibroids. People leave their doctor's office feeling like they've been gaslit, that they've being ignored, they've not been seen, that they have been dismissed and this has an incredibly damaging effect on the patient because you end up doubting yourself and if you can't talk to your doctor who can you talk to? You know, you're going there for advice and yet you're being told something, there's nothing wrong with you, which is unacceptable in my opinion.

Dr Louise Newson: Totally, I totally agree. And you know, doctors are not gods. We don't know everything. And also I feel very strongly, my consultations are not uni-directional. It's not me telling a patient, it's working out with a patient what's the best option or options. And I always leave people with the options, especially if they have a condition that's really affecting them, to say, well, if that doesn't work, then come back in X number of days, weeks, months, and we can try XYZ treatment. So you're left knowing that there is something because often, and I've seen it a lot and you might have experienced this where patients are being told, just go and have this blood test. And if you're no better, you could go and see someone else.

Evelyn Scott: It's the passing the buck all the time and not feeling particularly part of the process either. I mean, I'd love to meet a doctor like you who we have a conversation about it and we decide as a team what we're going to do going forwards as opposed to being, I don't know, you know, you can go see so and so we're gonna refer you to so and it is, it's incredibly lonely, a lonely approach.

Dr Louise Newson: So let's just unpick first really, what is endometriosis and what is adenomyosis, because the two are linked together.

Evelyn Scott: Yes.

Dr Louise Newson: A lot of people have both, some people just have one, but just explain what they are.

Evelyn Scott: So the medical definition of endometriosis is endometrial tissue like, so it's not the tissue, but it is very similar, growing outside where it's supposed to be. And it can attach itself to multiple organs. It can distort the pelvic anatomy quite substantially. Adenomyosis is a form of endometriosis where that tissue grows through the pelvic wall. It's incredibly painful like endometriosis and the two tend to get treated hand in and they're very similar. They often occur at the same time and they do tend to have the same treatment or lack of treatment as it were.

Dr Louise Newson: Because it can cause a lot of symptoms, a lot of pain, like you say, can affect periods. I don't know what you think, but a lot of times people are focusing on the symptoms, so they're focusing on treatments. The guidelines will talk about which painkillers to use, which in my mind is sticking a plaster on it. It's not helping the underlying cause, and I don't know what do you think about as a patient?

Evelyn Scott: I think the guidelines are incredibly outdated and they need a substantial review because the first line of treatment for these conditions is let's chuck painkillers at you and see how you cope, then let's chuck the Pill at you, and see how you cope. And it tends to be this process of trial and error, which doesn't actually help anybody. And the research doesn't support that it helps quality of life and it makes a patient feel any better. So I find it quite confusing that that's the approach.

Dr Louise Newson: Yeah, so I'm a bit unusual for a few reasons. I'm not a gynaecologist. I have had gynaecology training, but I'm general physician. But I've also got a pathology degree. So I'm very interested in science and pathology is the study of disease. So you have to know how the body works properly to understand how diseases occur. I am very interested in inflammation in the body, because lots of inflammatory diseases like diabetes, heart disease, osteoporosis are inflammatory diseases. We have more inflammation when we have low hormones. And obviously, as you know, I'm interested in hormones as well. But in my mind, endometriosis is an inflammatory condition, but it's also a multi-system condition because people can get endometriosis deposits on their bowel commonly, but also on their diaphragm, their lungs, their ureters, and get it anywhere in their body, really, can't they?

Evelyn Scott: Yeah, and I think the most recent research does prove that actually it isn't a gynaecological disease, it's an inflammation disease and it does affect every system of the body. I myself have had, well I do have endometriosis on my bowel and I've had to have a bowel resection and the bowel symptoms were absolutely horrific and they weren't necessarily occurring at the same time as my period, it was constant, but the endometriosis really, really attacked my bowel, but it also caused things like migraines and fatigue. So it does affect every system in the body. So we need to start looking at it as an inflammatory disease, as opposed to a gynaecological disease.

Dr Louise Newson: Yeah, so I'm not a surgeon, I'm very cack-handed. But when I was doing gynae training, people would come in with endometriosis and then the surgeons, the gynaecologists would say, oh this lady has, we thought, would have extensive endometrosis, the amount of pain she's in, but there's nothing really much there, maybe a little bit. And other people, they would open and find really extensive endometriosis with very little pain. And it was the first time and then that I'd experience this sort of dismissal of women, like, oh my goodness, she can't be in that much pain because there's nothing to see. Or like, why isn't she complaining more? Because there's lots. But it's quite incongruous that what you see is not what you feel. So then in my mind it's like, well, what is going on in the body? Do you see what I mean? And when they say, well, we cut it out and it's all gone, is that the right treatment? Like I'm...

Evelyn Scott: It's not as simple as that at all. And I think from my experience, we're talking to a lot of women, I mean, there's a staging system which doesn't really reflect the experience of the patient at all. And, I think you can have horrendous symptoms and yet have very little endometriosis inside. There's this complete disparity of the experience of symptoms and what stage you are, which is why I find the staging is quite inaccurate, I think, and it's quite misleading because I think your experience of the symptoms is much more important.

Dr Louise Newson: Yeah and also like I've learned a lot over the years because I learn all the time from patients and I've got a lot of clinical experience but there seems to be a big overlap between people with endometriosis, polycystic ovarian syndrome, fibroids, Ehlers-Danlos syndrome, probably a bit of mast cell activation and maybe fibromyalgia, migraines and they're almost like for some people, not me, but some people they put in the box, oh, they're heart-stink patients. They're the ones who don't know what to do. Whereas I think, what is a common denominator? Why is it that so many women have all these things? And I'm very anti-labelling women or men. I think it's not helpful for the patient. It might be helpful for doctors.

Evelyn Scott: It's absolutely unhelpful.

Dr Louise Newson: It doesn't, you don't really care what any condition is called. What you want to do is what's causing it. So then thinking about inflammation, thinking about what is the root cause of all of these, a common theme that is always going through in my clinic is women who have low testosterone and progesterone, actually, less so the estradiol, but the progestorone and testosterone are very, very anti-inflammatory. And a lot of women with polycystic ovarian syndrome, for example, have been told, oh, you've got high testosterone. No one's looking at their low progesterone, and that's why they're not having periods. They've got more inflammation in their bodies. And the same with endometriosis. One of the treatments, as you say in the guidelines, is give people contraception. So people think they're having hormones, but they're not. They're having synthetic chemicals, really.

Evelyn Scott: And they don't know that. They're not being told that at all.

Dr Louise Newson: And a lot of doctors don't knew that. And I'm sitting here squirming because 20, 25 years ago as a doctor, I'm still a doctor now, but as a GP, I would work out of those guidelines. And I would say to women, and girls, in their, 14, 15-year-olds, will go on the Pill as a treatment.

Evelyn Scott: It's an umbrella treatment and it's an umbrella treatment, not just for endometriosis. You know, it's if a woman presents with even slightly, you know, symptoms which can't be explained. They're like, it is a period issue. You put them on the Pill.

Dr Louise Newson: Yeah. And I, I'm very conscious because I've got three daughters and my youngest daughter is 14. So her, I don't think she'll mind me telling the world, but her, her period started a couple of years ago. You know, like a lot of people, I can't remember 12, 13, and she has uncomfortable periods. She feels a bit low. I sometimes see her crying in the shower and then we all go, are you all right Lucy? And then her period comes and she's fine. But it's not too bad, but she has very, very heavy periods and very painful. Now 10 years ago, I would have recommended her to probably see a doctor and go on the contraceptive pill. I don't want her to go on the contraceptive pill because I don't think it's the right thing for her. You probably, if you took a really big history, you might even think she might have endometriosis, but it's very hard, as you know, to diagnose especially in young people. So in the old days, if like, or even now for some people, she might be given the Pill, and then in 10 years' time probably would be diagnosed as endometriosis. But I'm not convinced she has it now. I think she has changing hormones and she probably doesn't have enough progesterone to support her hormones properly and having some natural hormones is probably the best thing just to supplement as well as looking at her diet. She's low in iron so giving her an iron supplement, giving her some vitamin C, you know looking at any other supplements is actually really important.

Evelyn Scott: It is, yeah.

Dr Louise Newson: But that's something that's quite, I know I'm a bit out there, but it's takes a bit more effort.

Evelyn Scott: Yeah, but it's not out there. I think that's the correct way to treat somebody in that situation. But the problems I've encountered is I didn't realise how important a blood test was to measure your hormones until quite recently. And I've had real battles with the NHS saying, I want to find out what my hormones are doing before you start doing anything. And they're well, oh it doesn't make a difference. And it's like well, actually, it does. I'd like to have a full picture. And it's really hard to get that information unless you go looking for it, like you see someone like yourself and you find a specialist, it can be really difficult. But I think nutrition plays a big part in it as well. I mean, I've stopped eating gluten and found that that really helps me. I wish I could cut out dairy, but I like cheese far too much. But there's a lot of roles that these things can play in the management of this condition.

Dr Louise Newson: Absolutely. And I think when you think about anything that increases inflammation, it makes sense it might make a condition such as endometriosis or adenomyosis worse. But what I often see and I absolutely understand, is that women go on the Pill, contraceptive pill, their mood flattens, they might go on antidepressants, then they might put on some weight, then they might feel rubbish. So then they comfort eat. And if you comfort eat, you're going to eat the best food ever. So then you eat, not you, I'm not saying you, but one.

Evelyn Scott: Oh, I've done it!

Dr Louise Newson: Well an inflammatory, you know, diet, might be drinking more alcohol. So it's just layers and layers and layers, which I don't think is very helpful. And then I speak to a lot of women who get given Zolodex injections, so which will basically just block all hormones. Or a lot of woman have their ovaries removed because it's a 'hormonal' problem. But actually removing the hormones means there's more inflammation in the body.

Evelyn Scott: Yeah. And that's where I'm at. I had a hysterectomy in February and I have one ovary left. And actually I'm back where I started. I'm in pain again every day. And I was told, well, I knew better. I know there's no cure for endometriosis, but I was led to believe I would feel a lot of relief once that, you know, everything was gone. And actually it hasn't made a lot, yeah, and I actually really regret having such a substantial operation with such a long recovery. Because it feels like it's done absolutely nothing.

Dr Louise Newson: It's hard isn't it?

Evelyn Scott: It is really hard and I think the problem is we're told this information by our doctors and we trust, you know, they have medicinal authority and they know what they're talking about. Well, they make you feel like they do. And then I know when my endometriosis came back, although I don't think it ever left, I began to think, my God, you know, maybe I'm the problem. You know, what's going on? And when I've gone back and I've said, could we look at other organs and see what's going on. And people just sort of frown at me and roll their eyes and it just creates this horrible sense of loneliness and that you are part of the problem and what can you do?

Dr Louise Newson: It's very hard, isn't it?

Evelyn Scott: Yeah.

Dr Louise Newson: Have you been made to feel like a time waster?

Evelyn Scott: Absolutely. I actually, on my third laparoscopy ablation surgery, I was told by a female surgical assistant that they were likely not to find any endometriosis on me, they were just humouring me by giving me this procedure.

Dr Louise Newson: Humouring you?

Evelyn Scott: Yep, humouring me. And I'm afraid I lost my temper. And I said, well, actually, if you looked at my medical history, you would see that endometriosis has been seen in my last procedures. And I just, I really don't appreciate you talking to me like that. And then she went very quiet when the surgeon came back to me with the iPad, with the images showing me the endo. But I've been made to feel like I'm completely wasting people's time. I've gone to A&E. I mean, last year I spent a lot of time in A& E because I was having a lot about bowel problems. And the consultant would tut at me and say, you know, why are you back here? We've told you, this is what you've got to do. And it's like, well, I'm struggling, you know, I've done what you said, and it's not working and I am in horrendous pain to the point where I don't know if something really seriously bad has happened. It happens a lot. And in fact, when I was in my teens, I was told that endometriosis is what you were told you have if you just got, you're just complaining about your periods. Which is just irresponsible and I don't know how anyone can say that.

Dr Louise Newson: I find it really sad as a doctor to hear the way people are spoken to, because one of the first things I learned as a medical student is listen to your patients and believe your patients. I don't believe, there might be a very small handful of people, but I don't believe people come and make up symptoms. I don't believe they want to be ill. I don't think they want waste anybody's time. Yet so many times I hear the word heart sink patient. And it's like, that's basically saying the doctor doesn't know what's wrong and it doesn't fit into a diagnostic model. And, you know, and it's the same with anyone with any hormonal issues. If you can't work out what's going on, you just go, oh, there must be something wrong with them. And it happens all the time in women's health. You know, women are more likely to be malingerers. We're far more likely to be diagnosed with personality disorders.

Evelyn Scott: We're 'too sensitive'.

Dr Louise Newson: Yes. And again, thinking about underlying pathology, I'm very interested in pain modulation and the role of hormones, how they affect our pain receptors. So our estradiol, progesterone and testosterone can affect our opioid receptors, for example. So they work as natural painkillers. So a lot of people have worsening pain and their pain threshold changes before their periods. So a lot of people will probably have the same stimulus but they would experience pain differently. So a lot of people will just have more pain regardless of the cause if they don't have hormones, but actually I would much prefer to have hormones than I would to have, you know, oxycodone or codeine or morphine, but it's just never really thought about it's like oh women just complain of pain more.

Evelyn Scott: Yeah and it's funny because you can go to the hospital and they can say all your tests results are normal, there's nothing wrong with you and yet they will still give you a bag full of codeine and send you home with it. So they know that something isn't right but they're not going to do anything about it, you just need to go home and take pain relief and it's not the answer and I do think we get tolerant to pain relief.

Dr Louise Newson: Of course you do. There's addiction and also morphine painkillers can actually induce menopause, they can block the hormones working. That's why a lot of people have flushes when they're on morphine, so they're not without risks. But one of my patients told me yesterday that, so she's young, she's in her mid-20s and she's got endometriosis and she also has PMS, so premenstrual syndrome, and she has responded amazingly well with Cyclogest, which is vaginal progesterone as you know. It's just been transformational for her. And she's just come to the three-month review and she'd gone to a doctor to try and get it. And her doctor said, no, you can't have it. It's not on the guidelines, but I can give you  co-codamol. So she's now on quite a high dose of co-codamol. She's feeling a bit spacey. And she said, I just don't know what to do. Like I don't really get why medicine's failing women because she's young and she can't afford to buy Cyclogest privately. I can't persuade a doctor on the NHS to prescribe something that I know is going to help her. And it just seems weird that it's not just she can't have that medicine, she's actually been given something that has risks and side effects.

Evelyn Scott: Absolutely. And they'd much, I think a lot of doctors would much rather give you something that does have horrendous side effects than deal with things, you know, than prescribe things like Cyclogest. I mean, I was quite lucky in the sense that my private doctor managed to convince my GP to prescribe me Utrogestan and Cyclogest. But she did say to me, you they're probably not going to like this. But I was very lucky. And I think that's part of the problem. It's a bit of a postcode lottery. If you have the doctor that is sympathetic, that understands endometriosis and understands that there isn't much known about it. And we need to think outside the box with it. Great, you're lucky, but there are so many women out there who don't have doctors that are empathetic and that understand and I think we as a society prescribe painkillers so readily because we want to like you say put a plaster over it rather than fix it and you know and it's sending a message you know that we're a society that's in pain and nobody's ever thinking well why?You know, what is the root cause? How can we look at this differently and help these women? Because pain, personally speaking, being in pain affects my quality of life in a huge way as it does with everybody. And I think people forget that it's about quality of live as well. It's sort of, you know, you have this condition, you're being really annoying but you keep coming back. And actually when it does affect your quality of like that, you're crying out for help and you're saying, the painkillers aren't working. What can we do differently? There isn't often an answer.

Dr Louise Newson: No and I think because there's so much uncertainty, because people don't know, then they're often not addressing the problem in the right way. But they're also, like we said at the beginning, it's just that listening to the patient. But if something doesn't feel right, it probably isn't. And like I've known that for many years, if I sit in a consultation and it feels a bit awkward, then it means it feels awkward for the patient too. I was really lucky when I was training to be a GP. I had an amazing trainer and he'd say, just say to the patient, this is feeling a bit awkward and uncomfortable. How does it feel for you? And I was like, I can't ask that. That was going to make me sound like an inadequate doctor.

Evelyn Scott: Do you know, it'd be so nice to hear that though. Because I'd be like, you know what, they're human as well.

Dr Louise Newson: Well I think that's important and I do it a lot. To say to patients, how does that sound to you? Are you comfortable with that decision? And if people aren't, then that's fine, but we've got to work out another way.

Evelyn Scott: I think the thing is now doctors have a 10-minute slot to see a patient where you can't really have those levels of open communication. It feels like a numbers game and I know I often feel like a number when I go to my GP because I'm aware they've got only this certain amount of time. We don't have time to discuss what's been going on, what's working and to plan. It's very much get in, prescribe something, get out the door, whereas most women I speak to would love to have a doctor that would have a conversation with them and you know, so what's going on at the moment?

Dr Louise Newson: Yeah, I get that. But, you know, I've worked as a GP for many years and you can get a lot done in 10 minutes, actually.

Evelyn Scott: Maybe it's just my practice then.

Dr Louise Newson: I think if you invest time with patients, it reaps a lot of dividends going forwards. And I think also patients are more prepared than they used to be. They're better advocates for their health. Some people don't like it and I see that a lot. A lot of doctors find it really uncomfortable when patients have got knowledge.

Evelyn Scott: I've had that experience. And it sometimes does you a massive disservice, I think, because a lot of doctors don't want to hear that you know what you're talking about, which is horrible to say, but it does make it you feel awkward.

Dr Louise Newson: Yeah, but you see, I love it, and my job, partly is as an educator that I've worked in medical education and communication for many, many years. And I feel that I shouldn't have access to information that you don't. We might be able to read it and understand it in different ways. But I feel very strongly it's so easy now to be able go to PubMed, read open access articles. Why should it just be me as a doctor being allowed to have that information? And, but a lot of doctors I know are quite paternalistic and they don't like that. And they like this sort of control. I mean, don't get me wrong, it's awkward when someone comes in and they say, I want this treatment. I've read it on the front page of the Daily Mail and it's been tested on two mice and they want it tomorrow. But again, you can talk through it and talk about expectations. But I think if patients are empowered, then you have a lot better consultation because you know where they're coming from.

Evelyn Scott: Absolutely, and I think with diseases like this, you have to go out there and speak to other women. I mean, I've educated myself by talking to other patients. And I don't think it's, I mean it'd be very easy to blame the doctors and I think a lot of people do. But it's not the doctors' fault. They don't have the information either. They don't have the training. And I was speaking to Professor Horne at University of Edinburgh and he was saying that, you know, a lot of doctors are really panicky about seeing people with pelvic pain because they don't have the answers. They don't know how to say that and communicate that. So a lot of people think, you know, they're just being dismissive. They're being cold to me when actually they're kind of floundering in the dark too.

Dr Louise Newson: But then they should say it. I feel very strongly, there are certain things that I really don't know how to treat. My husband's a reconstructive surgeon. I have no idea really about the ins and outs of his surgery. But when I reach to a level where I'm not sure, it's quite all right to admit to say, I don't know. And actually I've done it before. If I've got 10 minute appointment and in three minutes' time I know that I'm really out my comfort zone, I will stay to that person. Really sorry, I don't think I'm the right person, but I think you should go and speak to this person, that person come back and see me if that doesn't work. Because you don't want to waste your time. I don't want to.

Evelyn Scott: And that's a really helpful approach, I think.

Dr Louise Newson: And I think as patients, we should be allowed to say that as well. I had pancreatitis about 20 years ago and I was really poorly. And afterwards I still had pain in my epigastrium, like just up here. I didn't really know what was going on and I found it really difficult just to bend down to pick up my children, to do the washing, just day to day. And I was really flummoxed and I went to see a specialist who referred me to another specialist. And after about six months, I kept going and having more scans and I thought it was my gallbladder and he kept saying it wasn't and it would be too dangerous to have it taken out and like there there little girl what do you know? And I was like well this is, I just don't know what else to do, I'm really struggling and the last time I went to see him I started crying and I don't often cry and doctors, and I said I'm really quite uncomfortable I don't know what to do and then he said well you've got irritable bowel and you just need some antidepressants. I think you're a bit depressed. Now, firstly, I don't have irritable bowel, like I didn't have any bowel issues. And secondly, I was really fed up, but I wasn't depressed. And this was quite a few years ago. And I just thought, actually, this is awful. This is what patients must feel like. He was...

Evelyn Scott: I think the minute you show emotion that is then turned against you in a lot of situations.

Evelyn Scott: Yeah, well, it was. And I then went and said to my husband I'm not gonna go and see him again because he didn't understand. I'm just gonna go and get my gallbladder taken out because I feel that's the problem. So I went to go and see quite an aggressive surgeon who's got no bedside manner at all. But I just went, i want my gallbladder taken out? He's was like, yeah, that's fine. I'll do it. And he did it with no bedside manner but he was a great surgeon. And I woke up after the operation and I felt fine other than being in a bit of pain. And it was the best thing. And I wrote to the doctor afterwards to say, just to let you know, I had my gallbladder taken out. I feel well. You might want to know that for future patients but he didn't contact me again. But that made me realise how isolating and hard it is for patients. So to be an advocate, but to do the work that you're doing to advocate for others as well is really important. So you've written a book, which is coming out May. Just, what's the title? Tell me a bit about it.

Evelyn Scott: So it's called A Bloody Scandal. It's a deep dive into gynaecological neglect worldwide. So it looks at the systems, medical systems in different countries. It also follows the life of a woman from her first period to when she may experience symptoms, to getting a diagnosis, the treatment and how to navigate that process. And it also a big call for change to call systems into account and try and get research where it matters, trying to get governments to pay attention. And yeah, just to how to change things up a bit and get some change going on.

Dr Louise Newson: So powerful title and powerful contents, I bet.

Evelyn Scott: It's been great writing it and I've spoken to so many women for it and they've been brilliantly brave in sharing their stories. There's a lot of their stories in there, which I hope will make people feel less alone while they're going through that themselves.

Dr Louise Newson: Great, well done.

Evelyn Scott: Thank you.

Dr Louise Newson: So we've got a lot to do with endometriosis. We're doing some research, which I want you to be involved with. I think the conversation is turning and I think that the role of hormones, especially progesterone and testosterone, is really going to change a lot of people's thoughts. But before we finish, I just want to ask you three take-home tips, but three things that if someone's listening and thinking, that's all very well, I've got endo or I think I've go endo. But I'm getting nowhere, what three things do you think those people could do?

Evelyn Scott: In hindsight, I wish I'd known how important it was to speak to an endometriosis specialist, and they're very difficult to find. There aren't many of them, but they are worth their weight in gold. Trust your instincts, trust your body. Don't feel that mind-body disconnect that I often felt where I was really thinking, you know, is this all in my head? Even if you were made to feel that way, trust how you feel and, you know, and write things down. I think it helps. I mean, I have a bullet point list that I take to my, whenever I go to see any medical professional and I talk about what's been happening, what, how I feel, everything that you can think of get on that list so that you are equipped. So if you do have a little wobble when you're with the doctor, you've got it there. And just trust your instincts and don't be afraid to say, you know, actually that doesn't feel right. I would like this. Don't be afraid to speak your mind, because at the end of the day, you are the patient, you're there to be looked after, and the doctor can't help you unless you voice those concerns as well. So yeah, just trust your instincts and speak up.

Dr Louise Newson: Very good, really sound advice. So thank you so much for sharing your time and your experience today.

Evelyn Scott: Thank you for having me, it's been a pleasure.

Dr Louise Newson: Thank you.