The Dr Louise Newson Podcast - 49 – Endometriosis, dismissal and the fight to be heard

Episode Date: March 3, 2026

In this episode for Endometriosis Awareness Month, Dr Louise Newson is joined by author and women’s health advocate Evelyn Scott to share her personal experience of living with endometriosis, a condition affecting one in ten women that remains widely misunderstood, under-recognised and frequently dismissed. Together, Louise and Evelyn explore why endometriosis is not simply a gynaecological condition but a complex inflammatory disease and how gaps in research, outdated guidelines and lack of education continue to leave many women without answers or effective support. They also discuss the important role hormones may play, why listening to patients is critical, and how women can begin to advocate for themselves in a system that doesn’t always hear them.Want more from the podcast? Sign up to my premium offer: https://www.drlouisenewson.co.uk/premium-podcasts LET'S CONNECT  Subscribe here 👉 https://www.youtube.com/@menopause_doctor Website 👉 https://www.drlouisenewson.co.uk/Instagram 👉   / @drlouisenewsonpodcast  Download balance app 👉 / https://www.balance-menopause.com/balance-app/ LinkedIn 👉     /https://www.linkedin.com/in/drlouisenewson/ TikTok 👉   /https://www.tiktok.com/@drlouisenewson Spotify 👉 https://open.spotify.com/show/7dCctfyI9bODGDaFnjfKhg LEARN MORE Download my balance app 👉 https://www.balance-menopause.com/balance-app/Get tickets for my new theatre tour, Breaking the Cycle 👉 https://www.nlp-ltd.com/dr-louise-newson-breaking-the-cycle/

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 been gaslit. She's been 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 people. 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 ten women at least. Yeah, one in ten. Ten percent of all women they reckon, which I think is about 176 billion women worldwide. It's quite a lot of women, isn't it? It's an incredible amount of women and it's just as common. as diabetes. So diabetes has quite a lot of investment in it, doesn't it? So diabetes has proactive care. 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. It's a problem, isn't it, when it's only women? 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 of medical professionals don't know how to treat it. 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? That's terrifying, but it doesn't surprise me. No, no.

Well, because we're complicated because of our hormones and everything else. Absolutely. And I don't think people want to necessarily deal with women and hormones. It's scary. Absolutely, yeah. 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 help and I listen to you 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's 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 sort of that experience that you talk about would change the landscape for patients. It's interesting, isn't it? I mean, you've got endometriosis.

And whether, you know, terminology, I think it's really important. So are you a patient with endometriosis? Are you a sufferer of endometriosis? Are you someone that just happens to have endometriosis? You know, that already puts you into three different boxes. Absolutely, yeah. But you are someone with endometriosis who wants to help others as well, and that is really important.

But whenever I read anything about endometriosis in public domain, it's always followed with, but I've not been listened to. Yeah, and that is probably a universal experience that every woman with endometiosis, the endometiosis, and conditions like polycystic ovaries as well and fibroids. People leave their doctor's office feeling like, like they've been gaslit, that they've been ignored, they've not been seen, that they've 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 that there's nothing wrong with you, which is unacceptable in my opinion. 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 unidirectional. It's not me telling a patient. It's working out with a patient what's the best optional 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 X, Y, Z treatment. So you're left knowing that there is something because often, and I've seen it a lot,

and you might have experiences where patients are being told, just going to have this blood test, and if you know better, you could go and see someone else. Yeah, it's the passing the buck, isn't it, 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 forward as opposed to being, I don't know, you can go see so-and-so, we're going to refer you to so-and-so.

And it is incredibly lonely, a lonely approach. So let's just unpick first really, what is endometriosis and what is adenomyosis? Because the two are linked together. Yes. A lot of people have both. Some people just have one. But just explain what they are. 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. denomiosis 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 hand. They're very similar. They often occur at the same time.

And they do tend to have the first, the same treatment or lack of treatment, as it were. Because it can cause a lot of symptoms. A lot of pain, like you say, can affect periods. but I don't know what you think that a lot of times people are focusing on the symptoms so they're focusing on the treatments the guidelines will talk about which pain killers 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 you think about as a patient 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 the patient feel any better. So I find it quite confusing that that's the approach. Yeah, so I'm a bit unusual for a few reasons.

I'm not a gynecologist. I have had gynaecology training, but I'm a 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'm very interested in inflammation

in the body because lots of inflammatory diseases like diabetes, heart disease, osteoporosis are inflammatory diseases and 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. They, they urethus, and get it anywhere in their body really, can't.

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 it really, the endometriosis really attacked my bowel but it also caused things like migraines and you know 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 gynecological disease.

Yeah, so I'm not a surgeon, I'm very cack-handed. But when I was doing gyne training, people would come in with endometiosis, and then the surgeons, the gynecronidious would say, oh, this lady, we thought, would have extensive endometriosis, 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 then that I'd experienced this sort of dismissal

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 in congress that what you see is not it's not what you feel so then in my mind it's like well what is going on in the body yeah do you see what to mean and when they say well we cut it out and it's all gone is that the right treatment like i'm it's not as simple as that at all and i think from my experience you're talking to a lot of women people 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. So 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. 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, Erlost and Loss syndrome. Yeah.

Probably a bit of marshalin activation. And maybe fibromyalgia migraines. And they're almost like, for some people, not me, but some people, they're put in the box, they're their heart-sync patients. They're the ones we 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. It's absolutely unhelpful. It doesn't, like, you don't really care what any conditions call. What you want to is what's causing it. Yeah. So then thinking about inflammation, thinking about what is the root cause of all of these, a common thing that is always going through in my clinic is women who have low testosterone and progesterone actually less so the estrogen aisle but the progesterone and testosterone are very very anti-inflammatory and a loss of women with polycystic ovarian syndrome for example have been told or 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. And they don't know that. They're not being told that at all. And a lot of doctors don't know that. And I'm sitting here squirming because, you know, 20, 25 years ago as a doctor, I was still a doctor now, but as a GP, I would work out of those guidelines. And I would say to women and girls, like in their 14, 15 year olds, we go on the pill as this treatment. And 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's a period issue. Yeah. Put them on the pill. Yeah. And I'm very conscious because I've got three daughters and my youngest daughter's 14. So her, I don't think she'll mind me telling the world. But her period started a couple of years ago. You know, 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 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 a sea doctor and go on the contraceptive pill. I don't want her to go on a 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 for young people. So in the old days, if you 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. 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. It is, yeah.

But that's something that's quite, I know I'm a bit out there, but it takes a bit more effort. 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 realize 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 then 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 or you find a specialist. It can be really difficult. But I think there is, I mean, there is, 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.

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 not going to eat the best food ever. So then you eat, not you, I'm not saying you, but one. Oh, I've done it.

Oh, 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. Well, a lot of women have their ovaries removed because it's a hormonal problem. But actually removing the hormones means there's more inflammation in the body.

Yeah, and that's where I'm at. I had a hysterectomy in February, and I have one ovary left. Right. 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 of, yeah. And I actually really regret having such a substantial operation with such a long recovery. Yeah. Because it's done, it feels like it's done absolutely nothing. That's hard, isn't it? 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. 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. Yeah. 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? It's very hard, isn't it? Yeah. Have you been made to feel like a time wasteer? 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, yep, humoring 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 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 image. It's 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 of 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've said. And it's not working. And I'm in horrendous pains. 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're just complaining about your periods, which is just irresponsible.

And I don't know how anyone can say that. Starting in April this year, I'm going back on tour across the UK with a brand new show, breaking the cycle, the power of hormones. I'll be visiting 45 venues and my aim is to challenge what we've been told about hormones, to unpick the science that's often overlooked and to explore why there's still so much confusion and misinformation particularly around hormone health.

Our hormones influence everything, our mood, our sleep, our metabolism and our future health. Every single cell in our bodies is impacted by hormones, yet so many people are still left without clear answers. So in this show, I'll be sharing research, some history, the real stories and some very uncomfortable truth. There will be moments that surprise and maybe shock you and plenty of opportunities to reflect and ask me questions. So if you want to learn, feel empowered and be part of a movement that's changing how we think about hormones, I'd love to see you there.

You can buy tickets through the link in the show notes. I find it really sad as a doctor to hear the way people have 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 believe they want to waste anybody's time.

yet so many times I hear the word heart-sync 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 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 malingalicious we're far more likely to be diagnosed with personality disorders sensitive. Yes. Yet again, thinking about, you know, underlying pathology, I'm very interested in pain modulation and the role of hormones, how they affect our pain receptors. So our

Easterdial, 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, oxocodin or codeine or morphine. But it's just never really thought about it. It's like, oh, women just complain of pain more.

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 because you're doing this there's addiction you know addiction and also you know morphine pain killers 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, a premencil syndrome, and she's responded amazingly well with cyclogest, which is vaginal progestrone, 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 her 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 Kokodomol. So she's now on quite a high dose of Kokodomel, 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 psychologists privately.

No. I can't persuade a doctor in 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 with it. 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, then 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 eutigestan, a cyclogest. But she did say to me, you know, 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 a 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 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 life as well it's sort of you know you you have this condition you're being really annoying by you keep coming back and actually when it does affect your quality of life like that you're crying out for help and you're saying you know the painkillers aren't working what can we do differently and there isn't often an answer 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, you know, 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.

Yeah. 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. And 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.

It would be so nice to hear that though. Because I'd be like, you know what, they're human as well. Well, I think that's important. And I do 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.

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 who would love to have a doctor

that would have a conversation with them. you know, so what's going on at the moment. 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. Maybe it's just my practice then. I think, like, if you invest time with patients, it meets a lot of dividends going forwards.

Yeah. 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. I've had that experience myself. 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. Yeah, but you see, I love it. And my job partly as an educator, 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. Yeah.

But I feel very strongly. It's so easy now to be able to go to PubMed, read open access articles. Why should it just be me as a doctor being allowed to have that information? 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 miles 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.

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 felt they don't have the information either. They don't have the training. And I was speaking to Professor Horn at University.

of Edinburgh and he was saying that you know a lot of doctors really panicky about seeing people with pelvic pain because they don't have the answers and 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 the dark then they should say it yeah I feel very strongly you know there are certain things that I really don't know how to treat you know 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 yeah I don't know and actually I've done it

before and if I've got 10 minute appointment and in three minutes time I know that I'm really out of my comfort zone I will say to that person really so 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 really helpful approach I think and I think as as patients we should be allowed to say that as well. I had a pancreatitis about 20 years ago and I was really poorly and afterwards I still had pain in my apigastrum like just up here and 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 flummox and I went to see a specialist who referred me to another specialist and after about six months I kept going and I having more scans and I thought it with my gallbladder and he kept saying it wasn't and it would be too dangerous to have it taken out and like they're 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 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 I think the minute you show emotion yeah that has been turned against you yeah well it was situations and I I then went and said to my husband I'm not going to go to see him again because he didn't understand I'm just going to go and get my gallbladder taken out because I feel that's problem so I went to go and see quite an aggressive surgeon who's got no bedside manner at all but I just like what my gallbladder taken out so 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 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 have 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 harder 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? Yes. 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. Powerful title and powerful contents, I bet. 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. Great, well done.

Thank you. 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 the role of hormones especially progesterone, testosterone, is really going to change a lot of people's thoughts. But before we finish, I just want to ask for 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 got endo, but I'm getting nowhere. What three things do you think those people could do? In hindsight, I wish I'd known how important it was to speak to an endometriosis specialist, and they're very difficult to find. and 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 or I was really thinking of, is this all in my head? Even if you were made to feel that way, trust how you feel. 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, you know, how I feel, you know,

everything that you can think of get on that list so that you always. 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. Very good. Really sound advice. So thank you so much for sharing your time and your experience. Thank you for having me. It's been pleasure.

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