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Episode 260:
Show Notes
In this week’s episode of The Real Health and Weight Loss Podcast, Dr Lucy Burns is joined by Sonya Lovell, a passionate menopause advocate and host of the Dear Menopause podcast. Sonya shares her personal journey through cancer-induced menopause and her mission to improve support and education for women navigating this transition.
About Our Guest
- Sonya Lovell is dedicated to breaking menopause taboos and improving education and support.
- Host of Dear Menopause, she’s interviewed over 100 experts in menopause, mental health, and policy.
- Sonya’s own experience of entering menopause at 47 after breast cancer treatment, and the lack of support she faced, inspired her to empower others through advocacy and storytelling.
Why Sonya Chose Podcasting
- Sonya started her podcast to make education and real-life stories about menopause freely accessible, acting as a conduit for expert voices rather than claiming to be the expert herself.
- She values sharing lived experiences and expert interviews to help listeners feel less alone and better informed.
Sonya’s Personal Menopause and Cancer Experience
- Sonya was diagnosed with breast cancer at 47, which led to an immediate, chemotherapy-induced menopause.
- She experienced severe symptoms—night sweats, hot flushes, cognitive issues, mood swings, joint pain, and fatigue—and found little support from the medical system beyond antidepressants, which were offered to manage hot flushes rather than depression.
Taking Charge: Research and Advocacy
- Frustrated by the lack of local support, Sonya researched menopause care internationally, learning from leading experts in the UK and US.
- She discovered that women overseas sometimes accessed hormone therapy post-cancer, but it required strong self-advocacy.
- Sonya eventually found an Australian GP willing to have a patient-centred, informed discussion, and starting hormone therapy was transformative for her quality of life.
Championing Patient-Centred Care
- Sonya and Dr Lucy discuss the importance of doctors listening to patients, providing information, and respecting personal choices—even when those choices are outside standard guidelines.
- They highlight ongoing challenges with medical paternalism and the need for patients to advocate for themselves, including seeking second opinions if needed.
Systemic Gaps and Valuing Lived Experience
- There is a lack of menopause support within cancer care teams, leaving many women to manage symptoms alone after treatment ends.
- Sonya stresses the need for lived experience to inform guidelines and care, as clinical research often misses the real-world impact of menopause after cancer.
- Telehealth is recommended as a valuable option for women in regional or rural areas who lack access to menopause-informed GPs.
Navigating Risk and Making Individual Decisions
- Sonya shares her personal decision to stop certain cancer medications due to side effects, emphasising that risk tolerance and decisions are unique to each person.
- She encourages women to seek information, weigh options, and make informed decisions with their healthcare team, never advocating a one-size-fits-all approach.
How to Connect with Sonya
- 🌐 Website: dearmenopause.au
🎧 Podcast:
– Apple Podcasts
– Spotify
📸 Instagram: @sonyalovell
💼 LinkedIn: Sonya Lovell
This episode is a powerful reminder of the need for compassionate, individualised care and the value of lived experience in shaping better menopause support. Sonya’s story is a testament to the difference that advocacy, education, and the right support can make for women navigating menopause after cancer.
Episode 260:
Transcript
Dr Mary Barson (0:04) Hello, my lovely friends. I am Dr Mary Barson.
Dr Lucy Burns (0:09) And I'm Dr Lucy Burns. We are doctors and weight management and metabolic health experts.
Both (0:12) And this is the Real Health and Weight Loss podcast!
Dr Lucy Burns (0:22) Good morning, lovely friend. How are you this morning? It's Dr. Lucy here. I am without my gorgeous colleague, Dr Mary, but again, I have a spectacular guest who you are going to love, love, love, love. She has the best real-life story. And I'm super happy to chat with her. Her name is Sonya Lovell, and she has her own podcast, which is called Dear Menopause. How cute is that name? So appropriate. So, she is a podcaster. She's an ambassador for menopause—advocacy is her absolute middle name—and she's also the ambassador for a fabulous charity called Menopause & Cancer. So, so many things to talk about today, Sonya. Welcome.
Sonya Lovell (01:02) Thank you, Lucy. It is wonderful to be here. I'm so excited to chat with you today.
Dr Lucy Burns (01:07) Oh, I know. Well, you straddle so many kinds of spheres that our audience are listening to, are looking for, are watching. So, I think that this is going to be a fantastic chat today. First of all, I thought, though, we might talk about: why did you start a podcast?
Sonya Lovell (01:23) Oh, that's always such a great question, but not what I expected up front. You know what? It's really funny. I do get asked that a lot. And for me, it was such a no-brainer. But obviously, it's not something that everybody either has the expertise or the confidence to do. Or the network. Every episode of my podcast is an interview. I decided very, very early on that I was not going to be the expert. I know I'm not the expert. I am a conduit to information and education and sharing lived experience stories so that others can learn. But to do that, I need to bring in other people to be the experts. But why I decided to start a podcast—I actually dabbled in podcasting before podcasting was really a thing. Like a long time ago, a girlfriend and I had a podcast, which we called Collective Conversations. And again, it was her and I. We recorded it on our iPhones at the kitchen table—like the sound quality must have been terrible. I think we did like maybe ten episodes and that was it. We both had different businesses. But anyway, it was fun. And I remember that it was fun. And I remember that I loved hearing from other people that were listening to it. So, about three years ago when I really decided to step up and use my voice so much louder in this women's health, particularly menopause space, I knew straightaway that a podcast was going to be a vehicle for me that would allow me to deliver education, awareness, support, but also share those lived experience stories in a way that was free. It was easily accessible for anybody. Literally, it's on your phone. You pop it in your pocket and you go off for a walk and there I am—the same way that your listeners will do with you. And I love being able to deliver that information for free. I love making it easily accessible. So, yeah, and I love podcasting. I love talking. There's a hilarious story that I share sometimes, which was that in all of my primary school reports, the consistent theme was: Sonya talks too much. And, boy, has that paid off.
Dr Lucy Burns (03:35) I love that. I love that. And you're right. I mean, it is. Podcasting is easy. People can listen on a walk or in cars or wherever. So, yeah, I think it's fabulous. So, Dear Menopause—what a great name and great topics. But I'm also interested in your menopause journey. So I guess there's two things: your personal menopause journey and then, secondly, how you became an advocate in space.
Sonya Lovell (03:58) Yeah, cool. So answering your first question, my personal experience was not the normal experience. So I was diagnosed with breast cancer when I was 47. I found a lump in my breast in the shower one day, always had done self-checks—just, for some reason, was something that was ingrained in my habits. And every month I checked my breasts, and over the course of a couple of months, I noticed a lump had started to appear. Listeners, check your breasts on a regular basis—very important. So, yeah, that was when I was 47. I was peak fitness. I was peak happiness. I was living my absolute best life. My boys had got to an age where they were super independent. They were in high school. I was running a business. I don't know—everything was really, really good until I found that little almond-shaped lump in my breast. And as a result of my treatment for my cancer, I became very unwell, obviously, and I was also forced into an induced menopause, and that was as a result of my chemotherapy. And it took me a good two to three years to heal physically and emotionally from, you know, my nine months of active treatment. But wrapped up in all of that were the symptoms that I was experiencing that were from the menopause. And for anybody that's listening that doesn't understand the difference between an induced menopause or a surgically induced menopause versus a natural menopause—it happens immediately. It's like literally overnight. You go from having normal hormone levels to zilch, and so it is very intense. The symptoms are much, much more intense. I guess I've said that twice now, but it literally is much more intense. So the symptoms are more intense. You tend to get a whole bunch of symptoms all at once, as opposed to that more spread-out perimenopause experience. And you're also dealing with the trauma and grief of a cancer diagnosis. So it takes a long time to unravel and unpick what's causing what. So by the time that I worked out I'd kind of healed from the treatment that I was having, done some psychological counselling around the trauma, had some energetic healing as well, which was hugely helpful—I was kind of left with, you know, these symptoms and ongoing sadness. I was, you know, had significant impacts on my mood. I was either biting everybody's heads off or I was, you know, in the fetal position on the floor crying. And it became evident that those were the menopause symptoms. So then I started to try and talk to my oncologist and my different specialists—because one of the wonderful things about these experiences is you end up with this huge team of medical support—but none of them were able to support me. None of them would have a conversation with me about how I could manage these symptoms outside of being put on an antidepressant. And they don't put you on the antidepressant because you have depression. They put you on the antidepressant because there is evidence to show that it helps with hot flushes. But hot flushes—and I was having debilitating night sweats—were only one corner of what I was actually experiencing. And so that really grated against me—the use of a medication that, A, was for something I wasn't experiencing, B, was only, you know, putting a Band-Aid on a part of what I was struggling with. And so I had to fight tooth and nail to, A, come off the antidepressants—because that was a chore within itself, because nobody wanted to take me off them. I even had one GP say to me, “Well, if you think you need to come off them, we probably should up the dose.” Yeah, she didn't last very long as my GP. And then the other kickback is—because my cancer was oestrogen and progesterone positive—the doors to hormone therapy were just slammed shut within about 10 seconds of me raising it as an option. I was also being told by my oncologist—because oncologists are super, super careful and conservative (great word)—and, you know, in the words of my oncologist, “My job is to keep you alive.” They wouldn't even allow me to consider—and I hate saying "allow me," but that is very much how it felt—to consider using any alternative therapies either, because there's all these implications on their impacts on oestrogen and in your body in particular. So I was left in this absolute mess. Like I was really quite broken. So I dived headfirst into doing as much research as I could. I've been a researcher all my life in terms of, you know, as a hobby, if you like. I'm very medically literate. I'm very lucky that I can read, you know, clinical studies and understand them. It's just a bit of a gift. So I did a lot of research myself and started connecting with different doctors and specialists and started looking outside of Australia, because I realised that there were conversations happening in the UK, there were conversations happening in the US that were a lot more advanced than what was happening here in Australia. So I started paying attention to people like Dr. Louise Newson in the UK. A little while later, Dr. Corinne Menn came onto my radar, who is an OBGYN in the US who is herself a breast cancer survivor. And through them, I realised that Australia was behind the ball, but I knew that Australia would also catch up at some point in time. I kind of describe it as like I could see this wave that they were all riding, and it was kind of heading towards Australia. And I was like, “Well, you know what, I want to be on that wave with them,” because there is an opportunity to make a difference here so that other people don't have to experience what I experienced. So that kind of wraps up my experience—my experience through menopause and also, you know, what led me to become an advocate, I guess, as well. I guess I answered both of those in the same way.
Dr Lucy Burns (10:05) So can I just go back a couple of steps? With your menopause symptoms—so you're, you know, and again, you may not have even necessarily realised they were kind of menopause straight away. And I think this is one of the things that I certainly didn't know and feel mortified now about—the fact that I didn't know this—but that menopause is way more than hot flushes. So what were your symptoms that you had with this?
Sonya Lovell (10:30) Really good question. So I had debilitating night sweats. I had horrendous hot flushes during the day triggered by things I was able to work out. Like, alcohol was a huge trigger for me. I don't drink alcohol anymore for that reason and also the fact that it reduces my risk of recurrence. So that was a bit of a no-brainer decision to make. Cognitive function was significantly impaired. I lost words, which, listening to me talk now, you can't imagine what it was like for me to not be able to get through probably every third or fourth sentence without losing two or three words along the way. And when I say losing words, I knew what I wanted to say, but the word wouldn't come out of my mouth. And I'd have to describe things. So an example is I'd be sitting at a dinner table and I'd say, can someone pass me the fork? But I couldn't remember the word for fork. And so I'd be going, can someone pass me the piece of cutlery that's got the prongs? And they'd look at me and go, the fork? And I'm like, yeah, that's what I did, the fork. And that, for me, was really confronting. You know, someone that's a natural communicator, to not be able to name simple words was hard. I went and had a conversation with a GP about it, and a different GP to the antidepressant one because I'd moved on by then. And I had just this awful experience because she said to me, ooh, that's a bit of a worry. We're going to have to keep an eye on that. And I have a history of Alzheimer's in my family. You know, my grandmother had passed, and I was with, you know, awful death as a result of Alzheimer's and, you know, diminishing cognitive function. And that terrified me, the thought that, like, there was no mention of, look, you've also got this, this, and this. Like, let's look at the big picture here. It was this one thing that she targeted in on, and she made me feel like—I remember thinking, am I allowed to swear on your podcast? Yeah Oh, good. I remember thinking, oh, fuck, I have just survived cancer, and now I've got early onset of dementia. Yeah, so that was another kind of really confronting moment that I had. So cognitive function was really, really significant. The moods, like I mentioned, I was up and down and all over the place. Weight gain. But you know what? My weight gain was also very related, I think, to aromatase inhibitors that I was taking, you know, the trauma and everything else that goes with that. So yes, I definitely had weight gain. Was one caused by the other? Who knows? I had joint pain. I had horrendous joint pain at one point, and I couldn't sleep. I was so tired. I was so fatigued. My sleep was absolutely appalling. But, you know, it's one of those things where, when you consider everything else that was going on, there's no surprise that my sleep was so badly impacted.
Dr Lucy Burns (13:18) Yeah, yeah, yeah. And I think it's tricky, isn't it? Because people will go, oh, well, you know, of course, your sleep's because, you know, you've just had cancer. So, you know, you must be stressed and, you know, your whole life's changed, and probably your work's different and all of that stuff. So there's things that people can kind of explain. But when you put the picture together now—all the bits—you know, the menopause puzzle becomes complete, rather than looking at them as individual bits.
Sonya Lovell (13:45) Yeah, and what's a real shame is—I'll just go off that thread for a little minute—what's a real shame is, and this is something I'm hoping to address at some point in time, is that in the multidisciplinary teams that you have as a cancer patient, there is nobody in that team that is looking after the patient and their menopause experience. So they know that they've put you into menopause. Okay, my oncologist said to me right up front, our first meeting, “Given your closeness in age to the average age of menopause”—I was 47, average age is 51—“it's pretty likely that you're going to go into menopause after your first chemo session.” And I was like, okay, because to me at that point in time, I thought that just meant my period stopped. And I went, okay, cool, thanks for telling me. No worries, yes. You know, going back to what you said, like if there was somebody on that team—whether it's the breast care nurse or your nurse—that had more specific menopause training as well, that could actually take that bigger picture. Like your oncologist is great at, as he said, keeping you alive. Your surgeon's great at making sure the tumours are gone. You know, your radiology oncologist is great at getting in and tidying everything up after everyone else has had their go. But there's no one at all that is taking care of the patient when it comes to her experience with an induced menopause.
Dr Lucy Burns (15:12) Yes. And I think, you know, like you just said, that they know it's happening, and I'm sure that there are plenty of women—or some women—out there who it happens to, and maybe they don't get very many symptoms, and they just cruise through and, a bit like you, they go, "Oh, okay, no worries." And then there's the other people who have horrendous symptoms but are sort of just told to suck it up because your alternative is, you know, death by cancer.
Sonya Lovell (15:38) Yeah, yeah, that is exactly what happens. And, you know, I am an ambassador now for the amazing Menopause and Cancer charity that was founded in the UK by Danny Binnington. So it's the global charity for menopause as a result of cancer. There's a huge online community that Danny has, you know, facilitated as a part of that. And the most common phrasing in there is: menopause after cancer is harder to navigate than the cancer treatment.
Dr Lucy Burns (16:10) Gosh, gosh, that is—that's brutal, isn’t it?
Sonya Lovell (16:16) It really is. And, you know, there is this huge, you know, community of women—and it’s not just breast cancer. There are five gynaecological cancers that can also cause menopause after cancer. There are blood cancers that can create menopause as a result of cancer. You know, there is this significant cohort that are being diagnosed with cancer, that are then being treated for cancer, experiencing menopause as a result, and they're not being cared for after their experience with their medical teams is done. And it's not good enough.
Dr Lucy Burns (16:48) Yeah, absolutely. So tell me then, what happened to you after you sort of realised that, right, I've got these terrible symptoms, you know, my life's really crap at the moment, no doctor seems to be listening to me—what am I going to do? So what was the next step?
Sonya Lovell (17:05) So what I did do is, as I, you know, mentioned earlier, I went looking outside of Australia for information and research and what was happening to the women in the other countries where the conversation was actually being a little bit more advanced than what we were having here. And that was when I came across Dr Louise Newson, and I was lucky enough—Louise is now someone that I consider a friend. You know, I've interviewed her twice on my podcast. I've facilitated panel discussions when she's been here in Sydney for different events. But I learnt so much from her, and she, through her, introduced me to a US-based doctor called Avrum Bluming, and Avrum wrote the book Oestrogen Matters.
Dr Lucy Burns (17:46) Yes, yes, yes, my favourite book.
Sonya Lovell (17:48) I know, it's the most—everybody should read this book. It's amazing. And, you know, it came off the back of his wife's experience, who was also a doctor. You know, there's so much evidence grounded in what he talks about. And I became aware that there were women outside of Australia that were being prescribed hormone therapy for their symptoms, but it wasn't easy. They had to advocate for themselves. They had to become a bit pushy and be that squeaky wheel that doesn't accept no as an answer. And I had to work out how to do that in Australia and for myself to start with. That was, you know, okay, I did all my research. I had conversations with Dr Corinne Menn, I had conversations with Dr Louise Newson, I read Dr Avrum Bluming's book, I connected with Dani, who's the founder of the Menopause and Cancer Charity, and we had conversations. And I knew enough to know that for me—and this is a very nuanced conversation, for every single person it's going to be different—but for me, my quality of life was a higher importance for me than my fear of recurrence. And for me, somebody who is very smart and had done all my research, I felt that I deserved a patient-centred conversation with a doctor that would say, okay, you have all the facts, you have all the evidence, you're making this decision, I will support you. And I was able to find a GP in Australia. It took me a long time. It took me a lot of no's from other GPs. It took a lot of closed doors, a lot of tears—from me, not them, from me—until I found a GP, who I actually found through Louise, my GP who has also become a really good friend. And she was the one that would sit down and have that exact conversation with me. So I have been on hormone therapy now—so I'm on oestrogen, progesterone, and testosterone—and I've been on that for almost 18 months now probably, and that is what changed my life, literally changed my life. There is a story I tell—and it's funny, I tell it now quite unemotionally, but other people get quite emotional when I tell it, so I apologise if this makes anyone emotional—but I’d been on my hormone therapy for probably about two weeks, and I was in the kitchen cooking at home. I love cooking for my family. I love being in my kitchen cooking. And I had music playing, and I was singing. I was singing along as I was cooking, and my husband walked in. He'd been out, and he walked in, and he just stopped still, and he looked at me and went, “You're singing.” And I went, “Yeah?” And he goes, “I haven’t heard you sing for years like you’re singing now, like in the kitchen by yourself in your happy place.” And he goes, “You sound happy.” And I had this real lightbulb moment that I was happy. And I thought I had been happy before, but I actually really wasn’t. We all are very good at wearing our masks, and, you know, we're doers—we get on and we just do. And that to me—I sent my doctor a message straight away and told her what had happened—and she’s like, “You have made my day.” And my life since starting the hormone therapy has just got better and better, you know. It’s just been an absolute game changer.
Dr Lucy Burns (21:21) Yeah, amazing, I know. And I think, you know, the patient-centric approach—we all talk, like we're all doctors who go, oh no, I'm patient-centric, you know, the patient, we're all patient-centric—except we're not. And I think that understanding what patient-centric care actually means and actually doing it is really important because quite often it's going to mean that you are prescribing or doing something, investigating, I don't know, adding some intervention that is outside the guidelines. And that's where I think doctors get scared and worried, and potentially there's, I guess, a history of just paternalism that comes from medicine. But it's really around, as you said, that nuanced conversation and the doctor perhaps having the ability to decide or to discern whether the patient has all their knowledge. Have they just heard something off some wacko somewhere else and, you know, now they're coming to you because they want this? And I guess that's why it does require a conversation, and quite a probably detailed conversation. But it's also then about the doctor sitting with their discomfort of helping a patient but knowing that that's not actually what, you know, perhaps their peers would do.
Sonya Lovell (22:51) Yeah. Yeah, and I think that's a really valid point. And, you know, sometimes being patient-centric can just mean giving your patient the space to talk and for them to feel heard. I wrote a piece recently—I've just started a Substack—which not only do I talk now, I'm also back to writing, which I'm loving because it's long-form writing, which we haven't really done a lot of in a long time. And I wrote a piece about women being dismissed in the healthcare system. And somebody wrote a comment on it, which was like, you know, I love this piece of writing because I put some action steps at the bottom of it. And she was like, I'd like to add to your action step, you know, that one of the other great ways to find a really good doctor is to ask your friends and family, which I hadn't included in the article but is always something that I do talk about when I'm giving advice around advocacy and finding GPs that will listen. And she said, you know, there's nothing more powerful than being told, "This doctor will listen to you." And I was like, that is so true.
Dr Lucy Burns (23:58) Yeah, absolutely, absolutely. And I think that it is, it's crucial that you listen to your patients, that you listen and actually hear them. Like don't just lock ear service, which I think is the opposite of lip service. You like that, ear service? Yeah, because I think, you know, again, most of our listeners know that I work in the metabolic health space and sometimes there are people who have been prescribed medications and may not want to take them. Statins in particular have had lots of, you know, they're polarising medications. And I guess the way I like to look at it is my job is to give people information and facts and discuss risk and help them understand risk because risk is tricky to understand when you're looking often at, particularly, news articles where they will talk about risk reduction or risk increase or whatever and not really understand what that actually means. And then I say to them, so now you need to make a decision on what you want to do. And they go, what would you do? And I go, no, no. No, no. What do you want to do? And that's where it has to be patient-centric. That's the patient-centric bit of it, isn’t it?
Sonya Lovell (25:18) Yeah, it really is. And I think there's a bit of an education piece that needs to come into that for the patients as well often because, you know, you touched on this before—there has been so much patriarchy and paternalism in the medical system, inherent misogyny. And it's funny, when you say medical misogyny, people think you're talking about male GPs. I'm like, no, no, no. There is medical misogyny amongst all gendered doctors—not just GPs, specialists, doctors, healthcare system. But I believe that there is also—and I fell victim to this when I was having conversations particularly with my oncologist—that there is this... we fall into a behaviour of “you’re the expert, you’re on a pedestal, I’m just this patient that needs you to save my life.” And so whatever you say must be right. And I think that there is some education to be done from a self-advocacy perspective there, to allow a patient to feel comfortable to question what they’re being advised, particularly if anything doesn’t feel right in your gut. You know, that is the biggest tell. Our gut is our second brain. Like when something’s off, your gut knows. And often we override that with our brain because we start the thinking process. But I honestly believe that most women inherently know when something doesn’t feel right, when they’re being either dismissed or gaslit—worst case scenario. But we have this system where we believe that this is the expert, so therefore they must be right.
Dr Lucy Burns (27:02) Yeah, absolutely. I like this phrase where it's good to be open-minded—not so open that your brain falls out—but open-minded enough to know that you don't have all the answers.
Sonya Lovell (27:16) That's great. I love that.
Dr Lucy Burns (27:18) Because when people think they have all the answers, they stick to that line of thinking in the face, often, of irrefutable evidence. But because they've committed to this line, they can't see past it. And so it's really good to be open to new ideas, but with a healthy scepticism as well, because also you don't want to be gullible and go, oh, my God, well, you know, obviously drinking 100 mils of rhubarb every day is going to help me. So, you know, it needs to be, you know, some critical thinking there.
Sonya Lovell (27:53) Absolutely. And I think the other part of that too is that we do still need to respect the many years that a specialist—a GP, a specialist, you know, anyone—has spent to deserve to be called a doctor and to, you know, be in the position where they can advise from an evidence-based perspective. And, you know, there are many things that they are going to know that you don't know, and we have to be respectful of that always. But we still have the space to say, okay, but I would like to know this.
Dr Lucy Burns (27:26) Yes. Yeah, absolutely. And "I'm prepared to take this risk" is the other thing that, you know, the patient needs to— I guess that's part of the patient-centric thing, isn't it? Saying, right, well, these are the risks. This is what could happen—might not happen—but it could happen. You know, are you prepared to take that risk? And if they go, yes… And again, for any doctors out there, we don't have to deny patients options. We probably need to document it for our own peace of mind and our own, you know, medico-legal protection, but you don't need to just decline things.
Sonya Lovell (29:02): Yeah, yeah. Yeah, I think that's really great, yeah.
Dr Lucy Burns (29:05) Yeah. And you're right, just bringing back to that concept of medical misogyny—it's not just male doctors. Like, honestly, I think back to my own thoughts and attitudes when I was a junior doctor, which I clearly got from modelling. I now think back to—you know, you've often got several kind of patients that just stick in your mind. We had a young woman who used to constantly present for pelvic pain. And, you know, she'd come in and, like, did anyone give her any compassion? No. We all just thought she was a pain in the arse. We all just thought she was manipulative. We all just thought there was some sort of secondary gain in here. She’s just scamming the system. Attention-seeking. Attention-seeking, looking for opiates, blah, blah, blah. And again, this was now 25 years ago. I’ve got no idea what happened to her. But, you know, I'm assuming that way under there, there was probably—you know, and again, seems obvious now—she probably had endometriosis. She might have had PMDD. She probably had trauma. She probably had a whole heap of things. She was probably neurodivergent—all the things. But we just called her "the frequent flyer" and we called her "the pelvic pain." Like, we didn’t even humanise it. She was just her condition and, yeah, everybody spoke disparagingly of her and it’s, you know, I look back and think, oh, God. And I was part of that.
Sonya Lovell (30:28) Yeah, yeah. And, look, I think that's really brave of you to share that story and to be able to own that you, you know, were a part of that. But you've learnt and you've changed and you've probably got curious. Like you said, you know, you just named off five or six things that probably were what she was presenting with and, you know, and that's how we learn and that's, you know, one of the reasons why I'm such a big advocate for sharing lived experience and sharing people's personal stories as well because, you know, that is how so many other people learn and that's how clinicians learn. And, you know, I think there's a significant lack of respect for lived experience in guideline setting and, you know, I attended the International Menopause Society conference—you know, I'm sure you were probably there as well—in Melbourne last year. And it really struck me how little lived experience was shared. It was all very much clinical studies and, you know, it's like, but, you know, what you as a GP and what so many GPs have access to is anecdotal evidence and, you know, bucket loads of it. And that's not considered enough evidence to, you know, come into the decision-making process around policies and, you know, guidelines and things. And it's really frustrating as an advocate, particularly as an advocate of women's shared lived experience, that it's just not taken into account. And, you know, getting clinical research takes years and so much money. Like, there has to be space in there in the meantime to put some weight on anecdotal lived experience.
Dr Lucy Burns (32:11) Yeah, absolutely. And, I mean, you know, just to sort of chime in with the clinical studies, there is a ton of junk clinical studies out there. They're being published in things we call pay-to-publish journals. They're not even reputable journals. The media pick them up. They then run with it. They write some click-baity thing. You know, we just did a podcast episode because there was this whole article, like published in big, big papers, on, you know, "Do mangoes cure diabetes?" And it was like, oh. And there was sort of this implication that eating a mango a day would fix your diabetes. And I'm thinking, so, you know, again, look at the study. The study was rubbish.
Sonya Lovell (32:55) And that must be really frustrating that you have to then spend your time debunking those studies.
Dr Lucy Burns (33:00) Yeah, it is. And it's tricky because the more we do, then the more people want us to do, because, you know, that's now one of the things that we can do. But, you know, it is. It's time-consuming and looking at the evidence is tricky. But, yeah, so certainly clinical evidence is not all created equally. So I think that you're right—having some lived experience, having people tell their story. And as part of that, this is where we also need to look at believing people's symptoms. So I think sometimes people go, I started this, you know, medication and now I've got this, you know, tinnitus or something. And the doctor will go, oh, I haven’t heard of that as a symptom. And they'll look up the drug literature and they'll go, oh, no, no, that’s not from the drug. And, again, some healthy scepticism—we want to make sure we're not missing something. But, you know, looks like a duck, quacks like a duck—probably a duck.
Sonya Lovell (33:58) Probably a duck.
Dr Lucy Burns (33:59) Yeah. Yeah. So, yeah, so that is tricky. Tell me then—so you found your GP, yay, they listened to you, started your hormones. You know, this is something I'm just sort of more curious about. What happened with the aromatase inhibitor?
Sonya Lovell (34:16) Okay. This is my personal story, and it is not meant to influence anybody else. So, I disliked very much being on the aromatase inhibitors or the adjuvant therapy. I started on Tamoxifen. Then, once my GP—oh, no, sorry, not my GP—once my oncologist did my blood test to prove that I was postmenopausal, so my FSH levels were checked, and he was like, oh cool, you’re postmenopausal now, definitely. So we’ll take you off the Tamoxifen and put you onto Letrozole, which is another estrogen suppression kind of medication. And that was brutal. That almost broke me. I went from being an okay—by then I was probably 48 or 49-year-old, post-cancer okay—to being a very sad 90-year-old woman, was pretty much how I felt. It ringed every last ounce of estrogen out of my body very quickly, and it was horrible. So, I tolerated that for a few months, and then I went in to see him—the one and only time I cried in front of him—and I just begged him to take me off it. So, we did what, you know, he agreed to—a short break. I think I had six weeks or something like that where he said, “You don’t have to take anything for six weeks, but when you come back to me at the end of six weeks, you are going back onto something. You get to decide whether it’s Tamoxifen or whether it’s back onto the Letrozole.” And I was like, okay. So, I did the six weeks. Oh my God, I felt amazing in those six weeks. You know, the little bit of time that it took for everything to get out of my system, but then I had this window where I just felt fantastic. And I went back to him and went back onto the Tamoxifen because I knew I could not do the Letrozole. So, I went back onto the Tamoxifen. Our original verbal plan was that I would do a minimum of five years, with the expectation of it probably being 10—or 8 to 10, I think was kind of his guideline at the time. And remembering this, I think it has actually changed a little bit now as well. So, now we’re talking—that was about six years ago. And I was like, okay cool. I’d go and see him yearly, and I’d tell him about all my menopause symptoms and how, you know, kind of subpar my life was now. And he’d go, “Okay, well, you know, this is year three, so you’ve only got—you know, we’ll reassess at year five, but I really think we’re going to have to do those extra years.” I got to the end of year four—no, the start of year four, I think it was—and I just woke up one morning and went, I’m not taking this anymore. I just—I can’t do this anymore. I don’t feel well. I don’t feel like myself. I don’t want to feel like this anymore. I understand there are risks associated, but I’m okay with that, and this is my decision. That was probably the moment I really first made a big decision that I owned. It was like, this is my life. This is my health. This is my quality of life. I’m deciding not to take it. And I haven’t seen him since. And, you know, what’s really interesting about that, though, is they’ve never followed up with me to find out why I haven’t come back in for any more of my checkups. I’ve not had any, you know, reach out. So I was probably four years post-diagnosis at that point. I still saw my breast surgeon regularly until I got discharged from her at the five-year mark. And she knew—I told her that I’d stopped taking the Tamoxifen. So I was still touching base with her, but I got no follow-up from the oncologist.
Dr Lucy Burns (37:51) Oh, that's amazing. It's so interesting. And, look, you know, I have heard—or I've had patients whose specialists refuse to see them if they won't follow their advice. It's like, wow, that is really
Sonya Lovell (38:07) manipulative.
Dr Lucy Burns (38:08)Yeah, yeah. It's like, "Yeah, I can't look after you if you're not going to do what I tell you to do."
Sonya Lovell (38:13) And, look, I understand that there are situations where somebody's diagnosis, risk of recurrence, prognosis is way worse than what mine was. And there are people that do need to be in that continuous care if they have something that is more life-threatening than what I had. You know, I would never, ever suggest that somebody with a really serious diagnosis made that decision. But I also have a very firm belief, based on all the research that I've done, that I was over-treated for my breast cancer. You know, I know now that the treatment that I'd be prescribed today if I presented with the same diagnosis would be actually quite different to what I was prescribed eight years ago. So I felt comfortable enough with everything that I knew to make that decision for myself. But, you know, and this is where everything about cancer is so nuanced and so individual to every single person, that I sometimes feel—I really feel—like I need to over-emphasise that when I share my story, because I don't want anyone that's got a completely different diagnosis to me to think that they can go off and make the decisions that I made. You know, and even sharing that I take hormone therapy is something that I didn't share for a long time. You know, I've only been on it eight months, but probably for the first 10 months or so I didn’t share that I’d made that decision because I was scared of what other people would tell me.
Dr Lucy Burns (39:52) Yeah, and I guess there's two elements to that, isn't there? One is that, you know, people judging you and, you know, telling you you're an idiot and what sort of person are you and why would you be so ridiculous and that. And then the second thing, which I think you sort of caveated there, you know, that responsibleness, is you don't want other people just following blindly in your path without taking into account their individual circumstances.
Sonya Lovell (40:16) And the other thing that you need to take into account, and this is something that I witnessed and it landed really heavily on me, so I have a really great friend that I've met along this journey who is another incredible patient advocate, but she's had, you know, quite a complicated cancer experience. We're about the same age and she really struggles with her menopause symptoms, really, really struggles. She's also got some other side effects from her cancer treatments that she struggles with as well, but her menopause just compounds all of that. And we were catching up for coffee one day, so we were sitting across the table from each other, and I did tell her that I'd started taking hormone therapy because it was shortly after I'd actually had that response from my husband and that realisation of how much difference it had actually made to me, and I was kind of excited and, like, I shared it with her and she cried and she did verbalise it as well, but I recognised that her fear of a risk of recurrence was different to my fear of a risk of recurrence, and it was most likely her fear of recurrence that was holding her back from having that conversation and getting curious about whether it could be an option for her or not, as opposed to her actual diagnosis and the nuances of her case, if you like. So I became really cognisant that everybody has a different fear level and risk aversion. I'm someone that is actually pretty blasé about risk, and my husband finds it hilarious. I'll do things and he'll go, but weren't you worried about? And I'm like, nah, nah. And that does make making some of these decisions for me much easier than it does for somebody who doesn't sit in that same space.
Dr Lucy Burns (42:04) Yeah, and I guess just on that, it's probably the same with doctors. There are some doctors who are much more risk-averse and maybe it's their personality, and I guess at some level we have to respect that for them as a human. And there are other doctors that are, I guess, more comfortable with risk. And also, sometimes I just think there's the difference between the optimist and the pessimist. I often think, "I'm sure everything will be fine." That's often my risk—my thing. That's how I look at it. My husband is, you know, he's the planner. He looks for all the options and tries to control all the potential outcomes, and I just always assume everything will be fine.
Sonya Lovell (42:45) It'll be fine. It's all right, we'll work it out. If it goes pear-shaped on the day, we'll work it out.
Dr Lucy Burns (42:49) Yeah, yeah, yeah. So, yeah, so I guess there is that component in there too, and that doesn't necessarily mean that your doctor's a terrible person. It just, you know, we've got to kind of, I guess, have that level of understanding for them as a human, but it just means that perhaps you and them aren't a good fit.
Sonya Lovell (43:06) That's what I was going to say, and that is where the self-advocacy piece can come in, and it can just be that recognition that this is perhaps not the right doctor for you, and you have every right to then go and seek a second, third, fourth opinion. It took me probably conversations with five different doctors before I found my doctor—my person—and I think that that's, you know, I have great respect for all of the others, GPs—well, almost all of them. There’s a couple in there that don’t. Yeah, yeah. But, you know, they do. They come to the table with their own, like you say, their own risk aversion and their own belief system and ethics and morals and all of those things—and values—you know, all of that comes into play. But if you find yourself in front of a doctor that just is not in alignment with you, please go and seek a second opinion. You know, you have absolutely every right to do that.
Dr Lucy Burns (43:58) Absolutely, absolutely. And I think that that is probably the take-home message, isn’t it—that, you know, it’s horses for courses. And just because there’s a clinic in your area doesn’t mean that the doctor is going to be the right doctor for you.
Sonya Lovell (44:11) Yep, and it does become tricky when we are talking about rural and regional people—the population that do live outside of our wonderful big cities that we have here in Australia—but there is a really high percentage of women that are located in areas where they actually don't have access physically to another GP, and that can be really hard. But what I always say in that space is telehealth has become such a wonderful resource. There are some amazing options now from a telehealth perspective. And the other thing, you know, that I always share as well, which, you know, when I learned this, I was like, oh, that's really cool—so if you see another GP via telehealth, let's say you choose to have a GP that's more your person when it comes to talking about your menopausal care, you can still keep your family doctor, and they can provide them with the notes from, you know, so the two of them can actually communicate and keep this record of your overall health history—but you can choose to see the two of them for separate things.
Dr Lucy Burns (45:13) Oh, absolutely. And, in fact, that's exactly what our telehealth clinic does. Our tagline is Collaborative Care by Telehealth, so that we are not siloing, and you don't have to keep your treatment secret. Although it's interesting because I did have a chat with one of my patients who said to me that her doctor was away, she saw another doctor in the clinic, the other doctor starts looking through the notes and was really grilling her. Who is prescribing you this? Why are they giving you this? It was like, oh, interesting. She shouldn't have to justify. And, again, as a doctor, you can ask questions, and you can ask them in a curious way and a compassionate way, not in a sort of judgmental, criticising, how-very-dare-you-go-and-see-somebody-else way. Yeah. Yes. Lovely. This has been brilliant. I have loved every minute of this conversation. So, listeners, my friends, if you want to go and have another listen to a different podcast—again, Collaborative Care via Podcasts—I would highly recommend you head over to Dear Menopause and check it out. And if people want to, I guess, listen to you, help you, you know, maybe because you do public speaking and advocacy, where do they find you?
Sonya Lovell (46:27) Yeah, look, sadly, I would say the place that I spend the most time is on Instagram. So social media—I would love to live in a world where I didn't have to be on social media because there are so many aspects of it that I don't like. But it is a platform where I do spend a lot of time. So my Instagram, which is my name, Sonya Lovell, or there is a Dear Menopause Instagram account as well, but either way you'll find me on those. I do have a website—I'm in the midst of rebuilding—but there's a landing page there at the moment, which is just my name again, Sonyalovell.com, and I'm sure you can link through to all of those in the show notes. But, yeah, I do a lot of speaking. I do a lot of advocacy work. I do a lot of educational and informational stuff as well. So I'm very easy to find, and I answer all of my own emails and inquiries. So if you hit me up through a website with an inquiry, it's me that responds.
Dr Lucy Burns (47:17) Yes, and I can attest to that because I did just send an email going, “Oh, I’d love to have Sonya on the podcast.” It’s me. Wonderful, wonderful. And I think you're right—it’s tricky, the double-edged sword of social media, but on the other hand, it’s how people consume their information. So you’ve got to go to where the listeners or the viewers or the watchers or the scrollers are. Absolutely. Excellent. And my lovely friend, as you know, we will have all of these in the show notes. So you can always have a look at the show notes. Don’t do it while you’re driving the car. But we will have all the links to Sonya’s contact details in the show notes as well. Have the most spectacular week. And, Sonya, you too, and I’m sure I will catch up with you at the next Menopause Conference gathering, collective hoo-ha. It will be great.
Sonya Lovell (48:04) Thank you, Lucy, and thank you so much for giving me the opportunity to share my story and to be a guest on your wonderful podcast.
Dr Lucy Burns (48:11) You are welcome, gorgeous. You’re welcome. No problem at all. All right. Lovelies, have a beautiful week. I’ll talk to you all next week. Bye for now.
Dr Lucy Burns (48:21) The information shared on the Real Health and Weight Loss Podcast, including show notes and links, provides general information only. It is not a substitute, nor is it intended to provide individualised medical advice, diagnosis or treatment, nor can it be construed as such. Please consult your doctor for any medical concerns.
