Medical Gaslighting, Women’s Health & ADHD: Why So Many of Us Are Dismissed
What happens when you’re both a doctor… and the patient who isn’t being listened to?
In this episode of ADHD Women’s Wellbeing, I’m joined by Dr Liz Murray, a doctor, activist, artist, and founder of Mortal + Strong. After 15 years navigating chronic illness, including lupus, endometriosis, and miscarriage, Liz shares what it’s like to experience the healthcare system from both sides.
This conversation is about what often gets missed, female health symptoms that are normalised, the moments of dismissal that stay with you, and why for many neurodivergent women, why navigating healthcare can feel overwhelming, invalidating, and exhausting.
In this episode, we explore:
- Liz's journey of living with lupus, endometriosis, and miscarriage
- Liz's experience of navigating the healthcare system as both doctor and patient
- The impact of normalising heavy and painful periods on delayed endometriosis and fibroids diagnoses
- The gaps in menstrual health education and what doctors aren’t taught to look for
- The reality of medical gatekeeping and the “micro-traumas” of feeling dismissed
- Why GPs are under pressure to know everything, and how that impacts patient care
- The challenge for women with ADHD may experience in communicating symptoms in short appointments
- How ADHD can make women more sensitive to hormonal changes
- Practical advice for appointments to communicate more effectively
- The importance of self-advocacy in medical settings
- Why a holistic approach to women’s health matters (including diet, emotional wellbeing and lifestyle)
- How we can better support the next generation to advocate for their health
This episode is both validating and practical, offering insight, language, and tools to help you feel more confident advocating for your health.
Timestamps:
- 00:01 - Introduction to ADHD Women's Wellbeing
- 07:41 - Navigating the Challenges of Endometriosis
- 14:11 - Understanding Women's Health: The Overlap of Hormones and Neurodiversity
- 23:21 - Navigating Hormonal Health: The Patient's Perspective
- 37:47 - Addressing the Rift in Doctor-Patient Relationships
- 40:03 - Understanding Endometriosis and Women's Health
- 49:17 - Managing Health Holistically: The Interconnection of Conditions
Support and information on topics raised in today's episode:
The Miscarriage Association Website
The Miscarriage Association helpline and support services
Endometriosis UK Support Network
This week’s episode is sponsored by Understood.org, the leading nonprofit dedicated to empowering the millions of people with learning and thinking differences, like ADHD and dyslexia. Their podcast, AHA Aha! Shared candid stories about ADHD realisations, including the unexpected, emotional and even funny ways ADHD symptoms can surface!
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Alongside three neuro-affirming experts, we spent four hours exploring the questions that matter most to late-diagnosed women. Get lifetime access here!
Inside the ADHD Women's Wellbeing Live Recording, you'll find:
- Kate Moryoussef on post-diagnosis growth and her gentle framework for what comes next
- Dr Hannah Cullen on the neuroscience of ADHD and why your brain works the way it does
- Hannah Miller on reconnecting with purpose through a neurodivergent lens
- Adele Wimsett myth-busting on hormones, HRT, progesterone and perimenopause
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Inside the More Yourself Membership, you’ll be able to:
- Connect with like-minded women who understand you
- Learn from guest experts and practical tools
- Receive compassionate prompts & gentle reminders
- Enjoy voice-note encouragement from Kate
- Join flexible meet-ups and mentoring sessions
- Access on-demand workshops and quarterly guest expert sessions
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Links and Resources:
- Find my popular ADHD workshops and resources on my website [here].
- Follow the podcast on Instagram: @adhd_womenswellbeing_pod
- You can connect with Liz via her website (www.drlizmurray.com) or Instagram (@drlizmurray)
Kate Moryoussef is a women's ADHD lifestyle and wellbeing coach and EFT practitioner who helps overwhelmed and unfulfilled newly diagnosed ADHD women find more calm, balance, hope, health, compassion, creativity and clarity.
Transcript
Welcome to the ADHD Women's Wellbeing Podcast.
Speaker A:I'm Kate Moore Youssef and I'm a wellbeing and lifestyle coach, EFT practitioner, mum to four kids and passionate about helping more women to understand and accept their amazing ADHD brains.
Speaker A:After speaking to many women just like me and probably you, I know there is a need for more health and lifestyle support for women newly diagnosed with adhd.
Speaker A:In these conversations, you'll learn from insightful guests, hear new findings and discover powerful perspectives and lifestyle tools to enable you to live your most fulfilled, calm and purposeful life wherever you are on your ADHD journey.
Speaker A:Here's today's episode.
Speaker A:I'm here today with someone I think many of us will relate to and find incredibly interesting and she has a brand new book out on painful periods.
Speaker A:Her name is Dr. Liz Murray and Liz is a doctor.
Speaker A:She's an activist, artist and author and after working on the front line during the COVID pandemic, her 15 year battle with chronic health forced her to step back from a clinical role as a doctor where she utilized her experience as both a patient and a doctor to become the founder of a charity called Mortal and Strong to provide education and support for people affected by life changing and incurable health conditions.
Speaker A:Dr. Liz is a fierce and passionate health advocate, has recently been awarded a British Citizens Award People's Honours for services to Health and is also an ambassador for the Patient Information Forum.
Speaker A:And her brand new book Not Just Painful Periods is out on.
Speaker A:Well, it's available now to pre order and it is out on the 30th of April.
Speaker A:So welcome to the podcast.
Speaker A:Perhaps you can give us a little bit of an insight into your life before you know, you were obviously you trained to be a doctor.
Speaker A:That was your plan.
Speaker A:What happened in between?
Speaker B:Well, firstly, thank you for having me.
Speaker B:It's great to be here and hopefully I can share some insights that will definitely help your audience.
Speaker B:My story is a really bizarre one that for so long didn't seem to make sense.
Speaker B:The week that I started medical school to train to become a doctor, I started my own health issues and very quickly realized that not only was I training to become a doctor, but I was also experiencing the patient journey simultaneously alongside.
Speaker B:After I qualified, I started working as a doctor, I started trying for a baby.
Speaker B:At this point I hadn't.
Speaker B:I'd had lots of health issues but no formal diagnosis.
Speaker B:The classic tale of someone who'd been put on the pill for heavy periods seemed to have a lot happen to them, but no real diagnosis no one stepped back and looked at the full picture until I started having recurrent miscarriages.
Speaker B:And after three or four miscarriages, I was diagnosed with lupus and severe endometriosis, Stage four endometriosis.
Speaker B:And I had to have ivf.
Speaker B:I ended up having six miscarriages in total.
Speaker A:I'm so sorry.
Speaker B:Thank you.
Speaker B:It was two or three years of the worst time of my life, kind of hitting rock bottom, having those micro traumas of new diagnoses without any support, not knowing who I was, feeling I'd lost control of my sense of self, my ability to pursue a career which I'd always being so passionate about and feeling isolated from the world that I thought I was destined to have.
Speaker B:And I think that's one thing which many people with any kind of diagnosis go through, is that disenfranchised grief of suddenly everything you thought you knew or you wanted isn't going to be.
Speaker B:And you hit that diagnosis spiral.
Speaker B:You can't work, your career plans, your ability to have a family, there's those things will seem like they've taken away from you.
Speaker B:And I tried to go back to work for the COVID pandemic.
Speaker B:But very quickly catching COVID meant I was off for months and realised I couldn't keep working as a doctor with the extent of my health issues.
Speaker B:That's another story of whether of employers being adaptable to people with disabilities.
Speaker B:But that's a different conversation entirely.
Speaker B:But it did lead me onto recognizing that my insights as both patient and doctor was quite a new and unique one.
Speaker B:I had experienced the system as doctor but also as patient, and I saw the pitfalls.
Speaker B:I knew how hard it is for people to navigate.
Speaker B:I struggled to get a diagnosis of endometriosis.
Speaker B:I was gaslighted, dismissed for years.
Speaker B:If I was struggling to navigate the system, what chance does somebody who's not medically trained have?
Speaker B:And that was quite alarming for me and quite concerning to realise that I would be sat in the patient chair with the medical knowledge, being able to communicate the best that I possibly could.
Speaker B:And still I was being dismissed.
Speaker B:Still I was experiencing what it was like to be gaslighted and experiencing those struggles and frustrations and the impact to myself.
Speaker B:I ended up having a hysterectomy in my early 30s.
Speaker B:I fortunately have got two children, despite the six miscarriages in between.
Speaker B:But my journey could have been such a different one had I had the information, had I been equipped with the tools to be empowered over my own health.
Speaker B:I was not given all the information and there's so much misinformation on, online, on social media, patients becoming patient experts, dangerously crossing into giving medical advice, and it's a minefield.
Speaker B:And that led me to producing the charity Mortal and Strong, to help people, to help guide people through the impact of a life changing chronic condition, whatever the condition, and also to help navigate the system and how to get support, how to find the toolkits.
Speaker B:And aside from the charity, I do a lot of work on women's health and menstrual health in particular, because of my own experiences.
Speaker B:And one thing I'm very passionate about is recognizing that neurodiversity is a completely different experience.
Speaker B:You cannot apply the same rules of support, information education for any health problem without adapting it for someone with adhd, because their experience is entirely different.
Speaker A:Yeah.
Speaker A:Oh, thank you.
Speaker A:Thank you for sharing that and explaining that.
Speaker A:I mean, it sounds absolutely horrendous and so traumatizing, you know, what you went through.
Speaker A:And I just, you know, listening to you tell me that you had a hysterectomy in your early 30s, I just can't even imagine how it got to the place that that was the last option.
Speaker A:And that is to a doctor who has vast medical knowledge, has a way of advocating herself above, say, you know, someone who's not in the medical system.
Speaker A:Tell me a little bit about your endometriosis diagnosis and how long it took and did you suspect it was endometriosis and did you face a lot of pushback from other doctors?
Speaker B:This is something particularly which I write discuss in my book because the irony being that even as a medical student, I can visually remember my notes for the exams and I remember writing painful periods is synonymous with endometriosis and heavy periods is likely fibroids.
Speaker B:That was the cliche textbook answer for any exam question.
Speaker B:And yet I was suffering with periods that were flooding.
Speaker B:I was flooding every night.
Speaker B:I was doubled over, clots, pain to the point where I was needing crutches because I couldn't physically stand with the pain.
Speaker B:And yet it never occurred to me that I had endometriosis because I had always, since my very first period, had heavy, painful periods.
Speaker B:And it's that culture of this is normal.
Speaker B:You, you have period products that are designed for heavy flow.
Speaker B:So therefore you presume that a heavy flow is normal.
Speaker B:I'd seen the GP for painful periods and it was the classic, I was 17, put on the pill for painful periods, not told anything else.
Speaker B:And so I just assumed that was normal for me and I came off it in my early 20s to have my first child.
Speaker B:I didn't go back on it because, as many women do, I wanted to go natural without the pill, without any hormones.
Speaker B:And that is what destroyed my organs.
Speaker B:Because that time that I was not on the pill, it allowed the endometriosis to spread.
Speaker B:And within two years, I'd gone from stage one to stage four endometriosis, causing bowel and bladder damage.
Speaker B:That had I known that I was on the pill for suspected endometriosis or.
Speaker B:Or any kind of period disorder, I would never have come off it.
Speaker B:And I could have prevented that organ damage.
Speaker B:And I think that's a common scenario for so many women.
Speaker A:I mean, it's so close to home.
Speaker A:It's painful actually, listening to this for myself and for my daughter.
Speaker A:And there is this misinformation of like, come off the pill.
Speaker A:Let your body clear the system.
Speaker A:Get all this synthetic hormones out of your body.
Speaker A:Get ready to be childbearing.
Speaker A:Ready.
Speaker A:I've gone through fibroids.
Speaker A:I was told I had endometriosis.
Speaker A:When I had a hysteroscopy, I'd never had any pain.
Speaker A:I'd only had very heavy periods.
Speaker A:So I was like, really?
Speaker A:That doesn't sound right.
Speaker A:No one ever queried it.
Speaker A:The surgeon never queried it.
Speaker A:I'm now on a really high dose of progesterone.
Speaker A:Body identical progesterone to help stop the flooding.
Speaker A:What alternatives do we have?
Speaker B:And this is the problem, because 1 in 10 women have endometriosis, but 90% of women at some point will have painful periods.
Speaker B:And the commonest cause for those is actually primary dysmenorrhoea.
Speaker B:Just like the commonest cause for heavy bleeding is primary menorrhagia, which means that those symptoms are a dysfunction of the process itself.
Speaker B:There isn't a disease process like fibroids or endometriosis happening.
Speaker B:And that's one thing that a lot of people don't understand.
Speaker B:And this is why gps will start the Pill.
Speaker B:Because the commonest cause is something that doesn't warrant a laparoscopy and an investigation.
Speaker B:So you start the pill, you're doing well, doing fine.
Speaker B:Leave it for a few years, sit back.
Speaker B:And this is where the kind of the story of people taking 10 years to get a diagnosis, because technically you've gone for heavy periods, but you might not find out for quite some time because the pill is working.
Speaker B:The conversation that needs to happen is, fine, the pill's working.
Speaker B:There are several things that it could be.
Speaker B:Commonly, it would be this.
Speaker B:If things change or at the point where you then want to come off to try for a baby, that's when you really need to be mindful of the red flags and what to look out for other signs to suggest that something like fibroids or endometriosis is happening.
Speaker B:And, and that's what's not being given to women is that information that if the pill's working and your symptoms are managed, then brilliant.
Speaker B:You don't necessarily need to be always referred to a specialist to get that diagnosis, because a GP can manage many of these things in the GP without having to go to a hospital.
Speaker B:If things change, if you start getting other symptoms, such as pain or bleeding, passing urine pain or bleeding, having a poo pain during sex, those are the red flags that actually something else is going on.
Speaker B:Or if the pill stops working, then we need to revisit the diagnosis, then further questions need to be asked.
Speaker B:There's nothing stopping the GP doing simple investigations without referring you to a specialist.
Speaker B:So even if the pill is working, you could still have the conversation for, is it worth doing an ultrasound to check for fibroids so that you have some information before making any other future decisions later down the line.
Speaker B:The GP has a lot of tools and equipment at their disposal to start those investigations early.
Speaker B:I think some of the concerns is that everyone thinks that they have to immediately be referred to a gynaecologist and this is where we have this two year wait.
Speaker B:Whereas actually the gp, a good gp, particularly a GP with a Women's health special interest, has a lot of tools at their disposal to answer some of those questions.
Speaker B:So there shouldn't be a sense of watch and wait and have fear.
Speaker B:I know what the system's like, but I would always recommend finding a good GP with a special interest to answer those questions and to guide you through that time.
Speaker B:I think when I look back at my own story, had I known that there was a potential for something going on once I stop that pill, within a month or two of those periods becoming unhealthy and recognising what the signs of an unhealthy period are, you only need one or two cycles to realise something's not right here, and that is enough to warrant going down the investigation ladder.
Speaker B:The GP has kind of a flowchart of what to do next.
Speaker B:So you don't need to wait for six months to a year of struggling with heavy periods.
Speaker B:If you're having one or two cycles that are consistently not okay, that's enough to warrant.
Speaker B:Let's start exploring what's going on here.
Speaker A:Yeah.
Speaker A:And I think what's important to state in all of this is that the overlap, like we said at the beginning, the overlap that we know, and again, I say it all the time.
Speaker A:I don't think I've ever met one neurodivergent woman that hasn't experienced a similar calamity of different symptoms and difficulties and health challenges.
Speaker A:And it's hit them at different times of their life and it's been catastrophic in some ways.
Speaker A:It's just severely inhibited them in life, you know, whether it's their relationships, their career, fertility, mental health.
Speaker A:And there's so much overlap.
Speaker A:And so if you go to a doctor now, a gp, and I really hope that things are changing, if there's a way of a GP saying, ah, okay, so.
Speaker A:So there's possible endometriosis here and heavy bleeding and what are the symptoms are going on here and how's your mental health been and what's your physical.
Speaker A:You know, have you had any physical pain and maybe alluding to hypermobility?
Speaker A:What.
Speaker A:What were you like at school?
Speaker A:How have you been with friendships?
Speaker A:What was your mum like?
Speaker A:Did she have any mental health issues?
Speaker A:Do you remember what your grandma was like, blending it together?
Speaker A:Because women's health, this is.
Speaker A:This has always been here.
Speaker A:It's just been hiding in plain sight and it's just been.
Speaker A:Everything's been separated, totally separated.
Speaker A:So it's like, go to an endocrinologist, go to a gynecologist, go to see a physio, go to see the psychiatrist.
Speaker A:And it's like, why are we not getting the glue here?
Speaker A:Like, we need the glue.
Speaker A:We need it connecting much faster than it is.
Speaker A:And we need a system that understands that when we are seeing a woman or a girl present with ongoing gynecological, hormonal issues, the.
Speaker A:That there's other things at play here.
Speaker A:It's never separate.
Speaker A:And a GP could do so much.
Speaker A:They've got so much their power.
Speaker A:I talk about GP so much on the podcast, not to slate them in any way and not to, like, shame them, but it's because of what they can do to help, of just what awareness and knowledge can do when someone comes in presenting with a constellation of different symptoms.
Speaker A:I don't know enough about your charity, but is there anything within your charity that can help create better awareness within.
Speaker A:In this landscape?
Speaker B:Yeah, absolutely.
Speaker B:And we have a medical school outreach program, which means that we're taking awareness of not just the existence of the charity, but we're going to be delivering presentations to medical students of feedback, of common issues and challenges that patients experience.
Speaker B:It's one thing to be providing the support to patients to know how to navigate the system, but one thing that the charity is very keen on doing is actually changing the system itself.
Speaker B:And in order to do that, it's delivering feedback to the doctors of tomorrow and having those conversations and working with medical students.
Speaker B:I do genuinely have hope that in future generations, that kind of misogyny and kind of dismissal of previous generations, I think that it will slowly filter out.
Speaker B:And I think we are looking at a newer generation of more holistic, more holistically approached doctors who are also more in tune with what's going on in research.
Speaker B:And coming back to what you're saying about that overlap, I'm really excited to see that research and trials are now really honing in on trying to find and explore what the underlying connection is, because doctors are scientists, and if there is something that is scientifically proven, they're more likely to latch onto it and be in tune with it.
Speaker B:And this link between connective tissue issues such as POTS and hypermobility, as well as autoimmune conditions, neurodiversity, there is a clear, distinct link now that is being recognized, and they're exploring what that link is, which opens a whole new kind of territory for support.
Speaker B:Because I've had a lot more conversations and the conversation is becoming more prevalent, which is really reassuring because one would hope that we reach a point where if someone's given a diagnosis of adhd, like you say, there's this overall look, you shouldn't just be given support and counseling for what the ADHD diagnosis is, but if that person is menstruating, you also need to be talking about the contraceptive pill, the impact on hormone treatments and options, and their general health risks of other health issues.
Speaker B:Because, I mean, 40% of women with ADHD will also have severe PMS or pmdd.
Speaker B:There's a strong link of, if you're adhd, you're more likely to have endometriosis.
Speaker B:So there is that distinct.
Speaker B:I mean, I'm undiagnosed adhd.
Speaker B:I'm on the pathway waiting, but I highly suspect I am adhd.
Speaker B:And I have the classic triad of hypermobility, joint issues, endometriosis, and suddenly it was like a light bulb moment of, yeah, there is definitely an overlap here.
Speaker B:And that sensitivity to hormones when you're ADHD is much more significant.
Speaker B:And I saw one of your other guests speaking about the fact that so many women are probably being diagnosed as with depression, when actually it's likely a hormone issue.
Speaker B:It's probably adhd.
Speaker B:Women who are struggling with severe PMS or PMDD, who actually needs the right counseling and support navigating their hormones, not just being dismissed as being depressed.
Speaker B:Because once you start to recognize that, like you say, you are doing well with a progesterone only pill, I would never tolerate that because progesterone is my nemesis.
Speaker B:That would give me horrific anxiety, which.
Speaker B:But women need to be guided and have the tools to learn themselves what they work well with.
Speaker B:Someone with ADHD is more likely to have severe pms.
Speaker B:They're going to struggle functioning right before their periods, their symptoms are going to be more severe.
Speaker B:And for some women that is triggered by a surge or a drop in estrogen, whereas other women that might be the surge or the drop in progesterone.
Speaker B:It's not consistent for anyone.
Speaker B:But women need to know how to spot that within themselves so that they can make the right decisions for their own treatment.
Speaker A:Yeah, and that's 100% that.
Speaker A:I mean how the first line has to be is that we have to understand this sensitivity to hormones.
Speaker A:Exactly.
Speaker A:Like you say, I couldn't tolerate synthetic hormones, but body identical hormones, I've been fine.
Speaker A:I couldn't tolerate small amounts of progesterone.
Speaker A:I just felt rubbish, felt low and just lethargic.
Speaker A:I kind of pushed through and it's kind of like you go, you go up and you think, oh my God, it's going to be awful.
Speaker A:But actually you feel better when you go on a higher dose.
Speaker A:But because there's so many limitations on the nhs, like you know, going, I, I went in, I talked about it in another podcast and, and I went in organs blazing to my GP and I needed to him for him to prescribe me 300 milligrams of progesterone.
Speaker A:I said, read the research.
Speaker A:It's totally different to the, you know, the progestin, synthetic progestin.
Speaker A:He thankfully after begging, he said, yes, but he said this is not on my back.
Speaker A:Like this is, this is on you type thing.
Speaker A:And interestingly, I had a student GP before him and they said, listen, are you happy to see a student?
Speaker A:I was like, yes.
Speaker A:Had a whole conversation with her.
Speaker A:She was so open minded, she was so inquisitive, she was curious, she wanted to know how's it helping?
Speaker A:Why is it helping?
Speaker A:How did you know about it?
Speaker A:Asked me so many questions and where with him?
Speaker A:Because he was sort of probably late 40s, he's been in a GP for a while there was less, there was so much more resistance.
Speaker A:He wasn't open minded, but thankfully I just went, I'm really sorry.
Speaker A:I'm not walking out of here without that prescription because it's the only thing that's going to stop me from wanting prescription sleeping pills and anti anxiety pills, which I know won't work for me.
Speaker A:Like, I need this.
Speaker A:It's the most holistic way I can feel balanced on my hormones and balance mentally.
Speaker A:And I think I scared him a little bit, but I went in there and I was like, I have to do this not just for myself, because I have to then tell other women that we've had so much pushback and the research isn't there.
Speaker A:And thankfully it is, it's evolving.
Speaker A:You know, every day there's, there's a new piece of research that's coming out that's maybe small or small trials or it's, you know, but we're still getting, we're getting a better picture than we had five years ago.
Speaker A:Yeah, I mean, what, what's your experience as a doctor but also as a patient being.
Speaker A:And I know, I understand that we've got this complex situation with social media and everyone thinking that they're a doctor and chatgpt and all of that, but if it's patient, I'll use myself as an example.
Speaker A:You know, I had gone down this route of the progesterone, you know, pushing my progesterone up after lots of forums and speaking to other specialists, private specialists, and they were much more open, but then going to the GP and I had to say, this is like, I'm the patient, can you just help me?
Speaker A:What's that pushback that we still have where the patient can't be the expert of their own life?
Speaker B:It comes down to a fundamental kind of law rule within medicine that patients cannot demand a treatment and to do so immediately creates conflict.
Speaker B:And in an ideal world, you should not have to get to that point with a good GP or a good doctor, because good medical practice guides doctors that you're supposed to have a two way conversation.
Speaker B:Patients are allowed to have make informed decisions about their care and their treatment and that comes with a two way conversation.
Speaker B:Any kind of imbalance if the doctor is not listening to their patients and a patient is having to get to that point of demanding something, has been missed way further back in earlier conversations.
Speaker B:If a patient is having to be forceful, it means they're not being heard.
Speaker B:And that's something which I've talked a lot about and we Give a lot of toolkits on the charity website, it's called the ICE method of communication.
Speaker B:Doctors are taught this, patients are not taught this and I never understand why we never taught it to patients.
Speaker B:But doctors are taught the A key toolkit in any conversation with a patient should include the patient's ideas, concerns and expectation.
Speaker B:What ideas do they have, what do they think is going on, what are their concerns, what are they worried about and what are their expectations?
Speaker B:What were they hoping for when they came in?
Speaker B:So a patient goes in, they think they might have endometriosis, they're concerned because they're worried about their fertility, they're their expectations.
Speaker B:They might go in expecting a referral to a gynecologist and that's where the GP then has to guide the conversation and explain why a referral might not be appropriate at this point, but agree a plan with the patient so the patient still feels heard.
Speaker B:So at the minute we can start you on the pill, we can arrange an ultrasound, if things are not progressing, then I will meet your expectations, then we can consider when it's right.
Speaker B:Because if a patient goes in demanding something that is not medically appropriate or right, then it's the doctor's responsibility to have that discussion as to why.
Speaker B:The problem being that we have, and you probably had in your situation is we have quite a few doctors who are too proud to admit when they're out of their depth or a patient is discussing something that sometimes patients are more proud, adversed in research and they've done the research, they know what they're talking about and they come against a doctor who it's not their area of interest.
Speaker A:Especially if the patient lives and breathes this condition every single day and it's all consuming, say something like Ehlers Danlos or POTS or hypermobility, where there's chronic pain, migraines or endometriosis, where it's like, I'm not getting the help where I need it, I'm just going to go down a rabbit hole and go on Reddit, go on Facebook, like, and you're speaking to hundreds of people and then all of a sudden you're able to do this cross reference of people's experiences.
Speaker A:None of this is scientific, by the way.
Speaker A:That patient and then goes into the GP has eight minutes to basically say, like, put across their argument.
Speaker A:And again, when you're neurodivergent, that pressure can be really overwhelming.
Speaker A:For us to be able to get to our point quickly can be hard.
Speaker A:We want to include all the information we're under pressure that we haven't got enough time and then all of a sudden we can come across as maybe dysregulated, emotional, we might cry, we might become aggressive, like I'm just giving all these circumstances because we have lived and breathed that and we will have gone through hours at 2 o' clock in the morning.
Speaker A:Scrolling.
Speaker A:The biggest thing I find is the mums who are advocating for children.
Speaker A:So you've got a 16 year old daughter who's going through all of this and you're dealing with the periods of the pmdd, the God forbid suicidal ideation, like you're dealing with all of this and you just want the doctor to know.
Speaker A:You're just desperate for the doctor to know and you hit a dead end and you're like, you feel helpless.
Speaker A:And again it's like, that's why I want the patient to be heard more.
Speaker B:There's two bits of advice that I always give is that prepare your ice ahead of time, particularly if you're new divergent.
Speaker B:Prepare what your ideas, concerns and expectations are.
Speaker B:And if you go in using this language, a language which doctors are UK doctors are trained in this method of communication.
Speaker B:So immediately they'll pick up the fact that you're speaking the same language, you're identifying quite clearly in that short space of time what your ideas, concerns and expectations are.
Speaker B:If you then still meet resistance, it shouldn't have to be, but it's a technique which I've used myself in situations where this person's clearly not listening to me.
Speaker B:You're still dismissing me.
Speaker B:I've done everything to articulate what I've come in for and what I'm worried about is you can ask them to document your ideas, concerns and expectations.
Speaker B:Because if you say please could you document that?
Speaker B:I came in worried about this and I came in wanting to talk about this.
Speaker B:If you can you document in that in my notes, please, something switches and immediately if it's someone who to that point has been out of their depth and realizing that they're challenging you, but they're not actually trained enough to challenge you on that particular topic, it can be a gentle reminder for them that they still have accountability in your career and sometimes they can go away then and ask for a second opinion.
Speaker B:And several times I've used that.
Speaker B:You don't need to be confrontational.
Speaker B:You can ask it really politely and say, look, please can you just document that you're saying one thing, but I'm concerned about something else.
Speaker B:Ask them to document it in your notes and immediately something happens and they suddenly think, oh, actually.
Speaker B:And both times I've had to use it, they've actually gone away and asked for a second opinion and have progressed forward.
Speaker B:And it turns out that they were out of their depth because they don't know about the condition or what it is I'm talking about.
Speaker B:But we have this culture of some doctors are too rushed, they're too quick, we don't have that continuity of care anymore.
Speaker B:And so if they don't need to immediately resolve it, there's this culture of it'll be someone else's problem if you come back again.
Speaker B:Yeah.
Speaker A:And I think that in itself just shows compassion.
Speaker A:It shows recognition, understanding, validation.
Speaker A:Like, I don't expect any doctor to be like, AI, a robot.
Speaker A:You know, there's only so much one human can hold in their head.
Speaker A:They've also got life, bills, children, all of that.
Speaker A:Like, they are humans at the end of the day.
Speaker A:And I always think about that.
Speaker A:But I think if a doctor turned around and said, you know what, this isn't my area of expertise, but I really want to help you, can you bear with me?
Speaker A:I'm going to call you back tomorrow or I'm going to look into this, come back next week, I'm gonna get a better picture.
Speaker A:Because, you know, from a patriarchal perspective, women have historically been dismissed and gaslit and invalidated, and we've been told that pain is normal, suffering is normal, just get on with it and stop moaning.
Speaker A:And so with this is a systemic change in our society that is slowly, slowly catching on.
Speaker A:And it's shown in the fact that we've got so little health research, women's health research, and so we're getting there, but it's still so embed in our society.
Speaker A:And we see it pop up and I hear about it all the time.
Speaker A:You know, people tell me, oh, my GP wouldn't listen, my GP won't give me, you won't refer me, my GP won't change my hrt.
Speaker A:And it's like this gatekeeping that's making women very resentful, very bitter, very angry, which is not helping anyone, especially if, you know, you're a woman with autoimmune conditions.
Speaker A:We know that's inflammation.
Speaker A:We know women who've got fibromyalgia, chronic pain again, go back to sleep issues, migraines.
Speaker A:This is so much of it is emotional stress held in our bodies of maybe not being ever being listened to from a young age, not understanding ourselves from a young age, not knowing who we are.
Speaker A:From a young age and it's so important that we as women understand this.
Speaker A:We learn this language, we learn our emotional language because it does manifest in our bodies.
Speaker A:I really do believe that.
Speaker A:So I want to share another podcast with you that I think many of you will really connect with, especially if you were diagnosed with ADHD, ADHD later on in life.
Speaker A:It's called ADHD AHA.
Speaker A:And it's hosted by Laura Key, also from Understood.org and you'll know those moments when something just clicks and you start to see your life through a completely different lens.
Speaker A:Many of us have had this and we suddenly realize what's been driving us this whole time.
Speaker A:And I've been listening to a few of the episodes of ADHD at Heart, and what I really love about it is how it captures those exactly moments, those aha realizations where women begin to understand how ADHD or neurodivergence has shaped their life experiences, their relationships, their work, and often their sense of self.
Speaker A:And each episode is built around those real, candid stories from people diagnosed with adhd, which is why I think it's so relatable to this audience as well, especially if you've spent decades wondering why things have felt harder and more challenging for you.
Speaker A:I think it's the kind of podcast that helps you connect the dots even more and gently replaces the confusion with understanding and self compassion.
Speaker A:So to listen to ADHD aha, just search for it in your podcast app.
Speaker A:And that is adhd Aha.
Speaker A:With aha.
Speaker A:And I hope you find it interesting.
Speaker A:I mean, as a doctor, is this ever a conversation that's ever had around women's health?
Speaker B:There is a lot of changes happening at much higher levels now.
Speaker B:And there's a new CEO of the Royal College of Obsengyne, and I can see she is on it and she is trying to address some of this patriarchal dismissal and gaslighting.
Speaker B:And it's becoming more recognized.
Speaker B:And again, it's going to take time for that to weed out.
Speaker B:But I think something else that doesn't go in our favor is that I cry nearly every medical appointment I go to.
Speaker B:And I am not fazed by the hospital environment.
Speaker B:I've worked there.
Speaker B:But when I sit in that patient chair, I become emotional and I struggle, like you say struggle to articulate what is going on and what I'm trying to get across.
Speaker B:And something which I've recognized over the last year or so is that we are not just carrying with us in that appointment what we're there for, we're carrying that past trauma Those micro traumas of being dismissed for years, that previous GP appointment where you were dismissed and the GP made you cry, that sat with you at every future appointment because you're already expecting to be dismissed.
Speaker B:You're already going in waiting for a fight.
Speaker B:And that is true for so many women.
Speaker B:And so it is hard to then be heard and not be perceived as emotionally dysregulated or it's just depression.
Speaker B:Your pain is because you're depressed.
Speaker B:No, no.
Speaker B:You're depressed because your pain's being ignored.
Speaker B:But the problem is we're carrying our past medical history with us, and that includes our encounters with previous doctors and services.
Speaker B:And I remember turning up last year for gyne appointments, and when I found out that my regular gynecologist wasn't there and I was seeing someone different, immediate panic.
Speaker B:I immediately felt my blood pressure go up.
Speaker B:I started to get really anxious, really nervous, because immediately I hadn't even seen who this doctor was, didn't know the name.
Speaker B:But immediately that fear and expectation of, I'm going to be dismissed, they're not going to listen to me.
Speaker B:And I think, unfortunately, we're still a long way off that culture disappearing, still very much fresh in everyone's memories because the majority of women are still experiencing it.
Speaker B:But I can see and provide some reassurance from, like, a medical perspective that that culture is trying to be changed.
Speaker B:There are higher organizations trying to change that.
Speaker B:And seeing the new generations of medical students, I think the future.
Speaker B:I am hopeful for the future of medicine, and I think I am always cautious on social media, particularly that we need to try and present a balanced argument so that because if we continue to fuel this rift between patient and doctor, nobody's going to benefit.
Speaker B:And so I do try to provide some reassurance and providing the tools of how to communicate better, how to present yourself better so that you give yourself a slightly better chance going in there and to give you some confidence.
Speaker B:And I talk a lot about that in the book as well, of how to go to a doctor and how to articulate so that you feel more empowered, because we need to stop this divide between doctor and patient, because it's getting worse and patients are turning to AI, patients are not going to the doctor, and people's lives suffer ultimately.
Speaker B:So it's this kind of.
Speaker B:We're trying to improve the culture.
Speaker B:We need to empower women so that they feel more confident.
Speaker B:And I think in recognizing that as women, particularly women with adhd, with past history of being dismissed, if we know we're going to Go in and we're going to struggle in that chair.
Speaker B:How do we prepare for that consultation so that we arrive earlier?
Speaker B:We're already a bit calmer.
Speaker B:We have it focused to the ideas, concerns, expectations.
Speaker B:When we walk in, how do we equip ourselves to give us the best chance so that hopefully that appointment is more successful?
Speaker B:And in time, you then have more successful appointments and you find someone that you can work with really well as a GP and things begin to improve.
Speaker B:It's a slow.
Speaker B:It's chipping away slowly.
Speaker B:Something which has issues everywhere.
Speaker A:Well, I think.
Speaker A:I think that's what is so important and special about your book, is that you're coming as a doctor, so we've got that validity and that credibility, and you're also coming at it as a patient who's gone through really traumatizing situations and experiences, and you've experienced them from both sides.
Speaker A:And like you say, there's.
Speaker A:I don't know when, how it's happened, but it's happened over time, that there is this rift where there's maybe impatience from the GP because of the pressures they're under, but also maybe it's due to social media, like patients wanting to do the doctor's job and doctors kind of almost like dismissing people when they come in.
Speaker A:And I've seen a TikTok video, I think I've got ADHD, and it's like they probably just smack their heads, you know, again, oh, my God, how many more, you know, a week do I have to have this?
Speaker A:But it's.
Speaker A:Social media's opened up people's minds and it's been incredible for so many things.
Speaker A:It's also been very damaging, but it's given patients a way to advocate for themselves.
Speaker A:And when they've never had the language, they've never been able to understand, they've never understood the nuances, and that's what is so great about it.
Speaker A:But you can do an Instagram video and in one minute, explain one really severe, you know, part of having ADHD as a woman, and you'd be like, oh, my God, that's me.
Speaker A:And in that second, you get that, you know, validation.
Speaker A:But like you say, we need more resources.
Speaker A:And I'm so glad that your book is out to help create.
Speaker A:Create more of a communication sort of dynamic so people can go in there and have.
Speaker A:I mean, I've said to many of my people in my community, women in my community, print out things, make sure you've got some research.
Speaker A:You know, if you're asking for this or that find some research, have it in a, in a file, print out some bullet points that you've read about so you're not under that pressure.
Speaker A:Then you can even give it to the GP and the GP can read it and it's like, oh, okay, tell me a little bit about writing the book and what gave you this idea that you really wanted to focus on?
Speaker A:I guess menstruation and periods.
Speaker B:I think, particularly from my own experiences, I often joke and say that there isn't a women's health condition that I don't, don't have or haven't experienced.
Speaker B:I've had endometriosis, fibroids, miscarriages, ivf, I've got lichen sclerosis.
Speaker B:And I've experienced what it is to be dismissed.
Speaker B:But also I've experienced the hard way what happens for a patient when they don't get given the right information.
Speaker B:I resisted painkillers for so long because I felt like I was being fobbed off.
Speaker B:And this is a common experience for so many women with endometriosis.
Speaker B:Even if you've got the diagnosis and you say, my pain's really bad and you get given more painkillers and you immediately think, I don't want to mask the pain, I want you to fix the problem.
Speaker B:But what's not always explained to women is that endometriosis has no cure and the pain is not proportionate to the disease activity.
Speaker B:So you could be in severe pain and it doesn't mean your organs are in a life threatening state.
Speaker B:Inside, you might have a very small endometriosis lesion that's causing that severe pain because of other scientific factors going on.
Speaker B:And once women realize that they don't feel like they're being dismissed by being given painkillers, they're more likely to comply with taking the pill, with taking painkillers.
Speaker B:It took me years for that light bulb moment to go, and as a result, I suffered pain needlessly.
Speaker B:And then when you look at what's circulating on social media and the lack of medically reliable information that's out there, and endometriosis particularly is such a complex disease, the gynecologists call it the chameleon of women's health because it's so elusive it's hard to diagnose, it manifests differently for every woman.
Speaker B:Two women could have the same size disease but have very different symptoms and experiences.
Speaker B:And how they respond to treatment will vary from woman to woman.
Speaker B:It's a disease that is unlike any other women's health disease, it's lifelong, it's incurable, it can cause organ damage or completely destroy a woman's life, but it doesn't need to.
Speaker B:And when you realize that with the right information, so many more women could be supported.
Speaker B:That's why I chose to write the book and focus on menstrual health, so that this is the book that would have changed my life had I had this information as a teenager.
Speaker B:This has got all the information that I would hope would help my daughter navigate her period menstrual health.
Speaker B:This is the book that even if I'd got given it in my late 20s when I started having miscarriages, it would have guided me through everything for the IVF.
Speaker B:It would have stopped me from wasting £10,000 on IVF.
Speaker B:That was never going to work.
Speaker B:But nobody told me.
Speaker B:But all that is in this book.
Speaker B:Everything that I wish I'd known, I've put in this book with the compassion and empathy of.
Speaker B:I've gone through it.
Speaker B:So I know what it's like.
Speaker B:I know how hard these hurdles are.
Speaker B:But here's some of the medical reliable information.
Speaker B:This is factual.
Speaker B:This is trying to translate that doctor speak to patients in a way that you can easily understand.
Speaker B:Everything from your first period all the way through to menopause.
Speaker B:I'm now menopausal.
Speaker B:I'm in menopause.
Speaker B:I've had to go through so many of those challenges that I know how to relay the information to women at the different stages, including neurodiversity, because that has such a significant impact on a woman's menstrual health journey.
Speaker B:So many different areas.
Speaker B:If you've got endometriosis, your experience is different.
Speaker B:If you've got adhd, PMS is different.
Speaker B:Healthy periods will still be perceived differently.
Speaker B:For a woman with adhd, again, that's something that is overlooked in so many places.
Speaker B:But I wanted to make sure this had everything in it and I enjoyed writing it.
Speaker B:I felt it was cathartic in some senses to be able to make what I'd gone through into something positive for somebody else to hope that someone else doesn't need to experience what I did.
Speaker B:The trauma, the trauma that I did was avoidable.
Speaker B:And in those areas, hopefully somebody else won't go through it with the information from the book.
Speaker A:Listen, thank you so much for writing this valuable resource.
Speaker A:It's going to be on both my daughter's beds as soon as it comes out, honestly, because I. I battle with their pain and I have to say, as a parent, when I. I don't fob them off.
Speaker A:I give them a hot water bottle and I give them yourofen or paracetamol, a bath.
Speaker A:I try and do all the things, but in part of me is like, am I missing something here?
Speaker A:Like, should I be doing something more?
Speaker A:Should they go down?
Speaker A:Surgical investigation?
Speaker A:What am I not doing that I should be doing?
Speaker A:I'm like, what do I not know, though?
Speaker A:And this is the problem, you know, we still don't know so much.
Speaker A:And I think your book's gonna be very, very helpful.
Speaker A:And I think, like you say, it shows up so differently.
Speaker A:When I found out, it was just by the by, it was literally the surgeon just went, oh, I saw a bit of endometriosis and da, da, da.
Speaker A:And I was like, what?
Speaker A:Because I'd known that endometriosis is meant to be very, very painful.
Speaker A:And I'd gone in because of the heavy periods in the fibroids.
Speaker A:And then that was it.
Speaker A:It was literally like, case closed.
Speaker B:And I say this in the book.
Speaker B:You wouldn't be given an incurable diagnosis of something else like diabetes or something else without counseling.
Speaker B:Endometriosis should not be a diagnosis given off the cuff without any information and support.
Speaker B:It's such a life changing disease with so much impact.
Speaker B:Women need the information to then know how to make informed decisions for the rest of their life.
Speaker B:And that's what's in this book.
Speaker B:It's that counseling that you should be given with such a diagnosis.
Speaker B:And it's interesting that you say about your daughter, I'm the same.
Speaker B:My daughter is starting puberty and I can see the monthly cramps.
Speaker B:And I'm watching closely, thinking those cramps are quite severe and extreme.
Speaker B:And it's that heart sync of.
Speaker B:I've just finished my journey with periods and I'm watching and I'm like, I'm about to go through the journey again with her now, knowing that at some point I'm going to have to advocate for her because I can see already her pain is disproportionate to what it should be.
Speaker B:And it's that heart sinkers.
Speaker B:Not only do you advocate for yourself, but you're a parent and you have to advocate for your children as well and equip them with the tools to advocate for themselves.
Speaker A:That's, that's what I was just gonna ask.
Speaker A:I mean, from a holistic perspective, what would you say sort of holistically are the, are the key things that we can, I can speak to my kids about my daughters about, but also anyone that's listening.
Speaker A:Would you say that food, exercise, I know that stress reduction is a big part of endometriosis.
Speaker A:Do you talk about that in the book?
Speaker B:Yeah.
Speaker B:All the other options.
Speaker B:Because I know that a lot of people, there are some people who prefer to try the non medical route first with anything like this.
Speaker B:And I did cover diet in particular.
Speaker B:Endometriosis is not just a disease of hormones.
Speaker B:It's strongly influenced by your immune system and a state of inflammation.
Speaker B:And we know that diet has a big part of that.
Speaker B:There are anti inflammatory diets out there and protocols.
Speaker B:And I'm someone who sits on the fence of nothing to an extreme.
Speaker B:I think balance is always really important.
Speaker B:But there are certain food groups which are a huge inflammatory trigger.
Speaker B:Sugar, caffeine are the obvious ones that reducing those can immediately have a significant benefit for pain and hormone levels and the whole health system in general.
Speaker B:But there are other foods, red meat, certain estrogen, heavy foods, that if you start making some of those changes, I know a lot of women who have improved their symptoms through diet alone.
Speaker B:There is something in there, there is some research supporting some of those food groups, but inflammation, if you can reduce any level of inflammation within your body, your health will improve.
Speaker B:And this is the thing where endometriosis and some of these conditions have overlaps with other conditions.
Speaker B:If you've got endometriosis, you're more likely to be diagnosed with another autoimmune condition.
Speaker B:And at the time I thought it was purely coincidental that I got diagnosed with lupus and endometriosis.
Speaker B:And then looking back when I started my medication for my lupus and got that under control, my symptoms for endometriosis also improved.
Speaker B:No one put the two and two together.
Speaker B:They were being managed in completely different territories.
Speaker B:But now, thankfully, the science is now catching up and drug trials and research now for endometriosis is more directed towards what that inflammation and autoimmune system is doing.
Speaker B:But if you've got other conditions, any other health problem, if that's not well managed, your menstrual problems won't be well managed.
Speaker B:And if any status of your health, if you've got adhd, if any part of your health is not under control, it's going to affect your mood.
Speaker B:Because our hormones very much influence our mood, our ability to concentrate, our ability to sleep, they're all interconnected.
Speaker B:And to treat one in isolation, you may as well, you know, be not trying at all.
Speaker B:You need to treat everything together in a holistic way.
Speaker A:Yeah, I thank you so much for saying all of that because I just hit inflammation.
Speaker A:And like you say, that brings stress down, it brings ADHD symptoms under control, helps with sleep, mood, all of that, or joints.
Speaker A:And so if anyone that's listening to this, and it has been quite maybe a triggering or overwhelming conversation because we're talking about big things that has impacted probably so many of us throughout our lives.
Speaker A:But if there are little ways that we can make changes, like you say the caffeine and the sugar, even if we just reduce our caffeine and just see what happens, or we stop, you know, stop eating so many sweets and chocolate, we replace it with something else.
Speaker A:Just see how that happens.
Speaker A:Or taking a daily walk or just doing some breath work, like find that little thing.
Speaker B:Yep.
Speaker A:To see if it makes a difference.
Speaker A:Because this can be all encompassing and it can be so overwhelming that it feels like almost like how, how are we meant to deal with this, especially when we're doing, you know, with our kids, the whole conversation I've just been thinking about how can I relay this conversation to my girls where they won't just down, sit, go.
Speaker A:And part of me is just thinking, I'm just going to put your book on their bed and just let them, let them just open it up, I hope, and find some little tidbits themselves.
Speaker A:Thank you so, so much for this conversation.
Speaker A:It's going to be very, very helpful.
Speaker A:And can people, can they contact you?
Speaker A:Like, are you still working?
Speaker A:Like, what's your, how are you helping people beyond the book and the charity?
Speaker A:Yeah, so that's, that's quite a lot though, to be fair, not to minimize what you're doing.
Speaker B:Well, that's the thing.
Speaker B:Through the charity, we have a lot of support services that can help people with general problems and navigating the impact of disease.
Speaker B:But for me as well, I'm doing a lot of talks and public speaking engagements this year.
Speaker B:Anyone can contact me on my social media channels.
Speaker B:I pretty much always try and respond and get through all of them.
Speaker B:I'm not the fastest because this can be a lot, but I do try and respond to people and give general.
Speaker B:I can't give specific medical advice, but, but I do a lot of talks and a lot of videos where I'm sharing this information in bite sized chunks which hopefully can help people.
Speaker B:And I signpost as well to a lot of other reputable places to get the right sources of information.
Speaker B:And that's why I'm an ambassador for the Patient Information Forum, because they are the only UK's regulatory system that regulates health information online.
Speaker B:So that if someone's regulated with the piftic, it shows that they go through igorous processes and they're not just sharing regurgitating AI generated facts or Dr. Google.
Speaker B:They've gone through a proper process so that the information that they're sharing is reliable.
Speaker B:And that's why I do a lot of work with them for that because I do think that's important and I think we are shifting to a point where online information is going to be more tightly regulated so that people can't just give their own homemade patient information leaflets when they're not qualified and because people need reliable information.
Speaker B:But yes, I'm very approachable on any social media channel.
Speaker B:People can drop me a message and I talk about this a lot on on my channels as well.
Speaker A:Okay, well thank you so much Dr. Liz Murray.
Speaker A:Honestly, it's been a really eye opening and very, I would say validating conversation I think, for for many of us.
Speaker A:So thank you so much.
Speaker B:Thanks Kate, thank you for having me.
Speaker B:At any time and any way I can help with the conversation, please just let me know.
Speaker A:Thank you.
Speaker A:If you've been affected by difficult topics mentioned in today's episode, please do go to the Show Notes for links to helpful resources and support.
Speaker A:Thank you for being here and listening to today's episode.
Speaker A:I just want to remind you that if you are looking for more support on your ADHD journey, there are so many resources waiting for you over at adhd women's work wellbeing.co.uk so inside the ADHD Women's Wellbeing Workshop library you'll find practical and compassionate guidance on topics such as nervous system regulation, rejection, sensitive dysphoria, perfectionism, emotional regulation, hormones, parenting and so much more, all designed specifically for late diagnosed neurodivergent women.
Speaker A:You can also explore my new book book the ADHD Women's well Being Toolkit, which was published by dk, which is also available in ebook and audiobook which is packed full of tools to help you feel calmer, more regulated and more like yourself.
Speaker A:And if you do crave a bit more deeper connection and ongoing support, come and join us inside the More Yourself community.
Speaker A:It's a gentle space for learning, reflection and connection with other neurodivergent women.
Speaker A:And you'll also also find the recordings from our first ever ADHD Women's Wellbeing Live event which brought together incredible speakers and a room full of inspiring women for a truly special day.
Speaker A:We have recorded it all for you and it's there to buy.
Speaker A:So whether you're just starting your journey or looking to go deeper.
Speaker A:There's something there for every stage.
Speaker A:Just head to adhdwomenswellbeing.co.uk to explore everything.
Speaker A:And as always, thank you so much for being here and for being part of this community.
