The Dr Louise Newson Podcast - 085 - Medical Menopause - Emma McAuley & Dr Louise Newson

Episode Date: February 8, 2021

In this episode, Dr Louise Newson is joined by Emma McAuley, a young woman who was thrust into a medical menopause at age 24, after undergoing treatment for breast cancer.  Emma speaks openly to Dr Newson about her experience and how she was told very little about the menopause before her treatment. Emma expected a few hot flushes and instead experienced a vast range of menopause related symptoms and issues.  Dr Newson and Emma also discuss their first meeting at an event held by young adult cancer support charity, Trekstock. Dr Newson was speaking at the event, titled 'Lifting the Lid on Cancer and the Menopause' and Emma talks about the effect it's had on her to finally feel safe enough to ask questions and be able to get the correct advice. Emma's Three Take Home Tips: In terms of hot flushes - layers are your friend! Even in the winter, wear items that are easy to take off and put back on. Speak to everyone you can - whether that's your peers or a medical professional. Knowing you are not alone can be a huge help. Even though other people around you may be complaining about their periods - it's okay to miss having your own. Talk to your friends about how you are feeling. Take a look at this booklet from Dr Newson -

Welcome to the Newsome Health Menopause podcast. I'm Dr Louise Newsome, a GP and menopause specialist, and I'm also the founder of the Menopause charity. In addition, I run the Newsome Health Menopause and Well-Being Clinic here in Stratford-upon-Avon. So today I'm very excited and delighted to introduce to you someone called Emma, who I've just met over the screen because we're doing this podcast over the internet. But I connected with her actually in pre-COVID days via Instagram. So welcome Emma today. Hi.

Yeah. It was so long ago. It was at the Trekstock event, wasn't it? That's right. So it was before COVID in times that we were going out. I came down to London and gave, I was on a panel actually for a charity called Trekstock. And it was talking about menopause for women who've had. had cancer in the past. And after that, you connected with me. Yeah. And so I sort of enticed you to

come to talk about your experience, because I was really struck by that evening how many women, and I knew there were a lot of women suffering, but how many young women were really suffering in many ways, but also they didn't have a platform or a sort of an area where people could actually understand what they were going through. We're not even talking about treatment here. We're talking you're just about being able to vocalise your symptoms that were related to your low hormones and someone saying, yes, I understand that must be awful for you. There doesn't seem to even have that. So I came away from that meeting.

Really sad, actually. Really sad. And thought, gosh, there's so much we need to do. So, yeah, so thank you for joining soon. So are you happy just to set the scene, really, and to explain why you're here and what happened to you? If that's okay. Yeah, sure. So, well, I'm Emma.

I was diagnosed with breast cancer when I was 24, three years ago. It was actually three years ago on Sunday. Good. I had my cancer anniversary. I was diagnosed with her two and estrogen positive. So I was told at the time, you know, you'll be doing like the chemo and surgery, but you'll have some like add-ons, so to speak, in terms of treatment. And, of course, one of those for the estrogen was,

endocrine therapy. So right at the start, when I started chemo, I was given the Zolodex injection as part of my treatment, but also as an attempt to preserve fertility, which it seems like all people with ovaries are given, whether they've got a hormone-related cancer or not, whilst they're going through chemo. And then once I finished chemo, we carried on with the injection this time as part of treatment on its own with, I can't pronounce it, I'm not going to lie, an aromatose inhibitor. Aromatase inhibitor. There we go.

So it blocks every bit of estrogen in the body. Yeah. So the Zolodex is handling the ovarian suppression and yeah, the other medication, a pill that I take every day is handling the other side. So my body, as far as I'm aware, is completely devoid of estrogen. I had to change the tablet that I was on because I was having menopause-related issues. Because during chemo, some of the side effects came from, I think, both, you know, like pain and weird, like temperature fluctuations and issues with my memory and, like, cognitive side of things. And so when I finished chemo and was recovering from that,

some of those side effects were going away or decreasing, but they'd only go to a certain point. And it wasn't until I was having my checkups, and I'm saying to them, I'm still really fatigued, I'm still in pain, my mind is still a little bit in the clouds. They just kind of turned around went, well, that sounds like it's to do with your hormone medication, menopoles. So I did some research myself because people were asking me,

you know, what do you mean hormone medication? Like, why are you in a medical menopause? And I didn't know what to say to them. I was just kind of like, because my team told me so. So I was doing research, so I knew what to say to them. And that's how I was finding all these things out or speaking to people, like going on Instagram and being like, is anyone else having really bad urinary urgency?

I don't know whether I've got a urinary. infects or something and people go menopoles, menopoles, menopoles. Yeah. So when you were, I mean, gosh, so just going back a bit, when you were 24, I mean, that's very young, isn't it? It's very unusual to be diagnosed with breast cancer. That must have been obviously, I mean, it goes about saying a massive shock. Yeah, definitely. Did you just find a lump or what happened? So my mum had breast cancer. She was initially diagnosed in 2012, so it became very big in my family to make sure you're checking whatever age you are. And then we found out that her cancer had metastasized in 2017.

So I was checking and not even like, oh, I need to check. It was just something I was doing routine, not even realizing I was doing it. And then one day I was just in the bar having a wash and like grazed my breasts as I was washing. I was like, oh, that's never been there before. So look down and just like my whole boob look different. my nipple completely changed direction. There was swelling. There was dimpling around my uriola.

And so I had a shower sticker from copperfield that has the symptoms on. And I got it at university. And it was just like by the side. So I was like looking at that. And I was like, oh, got a few of those. I'm going to need to get a appointment. There was a few delays, not on their part, but it's mostly on my part because my mom was very ill at this time.

She was dying. and she died at the end of November 2017 and then I was diagnosed three weeks later. Oh gosh, Emma. Yeah. Goodness me. So you've had to go through so much, so quickly at such an early age. And just to have the diagnosis, let alone the treatment, is really battering, isn't it? Yeah.

I don't think English has the words to describe it, really. It's just, yeah, it batters you mentally, physically. emotionally, all of it. Yes, totally, totally. And so when someone mentioned the word menopause, was it in your radio at all? Did you know what that meant or how it could affect you at all? I knew what the menopause was because coming from a single parent family and being an

only child, my mum and I was so close. So I, you know, I was one of those children that, you know, boundaries didn't exist. You know, she'd go to the toilet and I'd be like, walking, still on the bath and have a chat with her. So from an early age, I knew what periods were and I knew about menopoles and things like that in like a very child friendly way. But yeah, it just didn't feel like something that even when they said hormone therapy, it just didn't really feel like, I don't know how to describe it. It just didn't feel like it was something I was going to have to deal with in the same way. I don't know whether that was because, well, I think big part of it obviously being my age in cancer literature, you don't see many. young people so you kind of you don't feel like that's you.

And of course, it's not a natural menopause. My body's not naturally going through it. My body's forced into it. And there's those two different medical fields sort of going on at the same time. You know, oncology and then the endocrine, hormones, guine, all that kind of stuff. and they exist not together but separately. So there's this kind of like weird, you're in this weird middle ground. It's very difficult, isn't it?

Because I think a lot of people think that menopause is just a few hot flushes and you'll get through it. And what they don't realize is, you know, it affects us in so many different ways and it affects ourselves in so many different ways. And also that there are health risks as well. Well, so one of the things that sort of struck me when I spoke at another charity event, actually for young women of her cancer, is that one lady was saying how she had no idea that it could affect her bones and her heart and her brain.

And that's really important for me as a physician, is that there are obviously different treatments for menopause, but one of the things, whether someone takes HRT or not, is really important to look at bone health, to look at heart. heart health because we know there's this increased risk of osteoporosis and heart disease. So we need to not just think about the menopause is something that causes symptoms, but something that can affect our future health. And that's probably something that maybe wasn't discussed with you or hasn't been discussed with you by your cancer doctors.

Not really. No, I think in cancer world, menopause is seen kind of as a side effect, not as something on its own. and because you've been diagnosed with cancer and you've gone through some really tough treatments like chemo or big surgery, it's kind of seen as you've just got to go on with it to an extent. Yes, yeah.

You know, it's not as bad as the cancer. It's not as bad as the chemo, you know, kind of just got to get on with it. My team spoke to me in terms of bone health. I have an additional infusion. What's that called? Menopause brain. I can't remember what my own infusion is called.

that would be a type of bisphosphonate with it. It was a metre. I have that every six months. And they just kind of said, you know, this should help your bones. But then again, I had major problems with it the first time. And, yeah,

ended up being like blue lighted to hospital, struggling to breathe and in agonising pain. And even they were like, we don't know what's happening inside of you. But yeah, a lot of what I found out since it has been through my own research, or speaking to a community, and then of course, the track stock event.

Like, I didn't realize even that people that are in a medical menopause could have more side effects or harsher side effects because their bodies are just being put into it, so naturally going through it. Like, that wasn't ever said to me. So I'm asking, like, my older relatives, you know, like, so was you like this during your menopause? And they're going, no, I had a couple of hot flashes and felt a bit moody. That was it.

Or even like, to be honest, I barely noted. And I'm sitting there like fanning myself, taking like a ton of vitamins and with heat pads all on my joints and looking like a 20-odd-year-old but feeling more like a 70-odd-year-old. Yeah, and that's, you know, we're not designed to have no hormones when we're in our sort of 20s and 30s. And that's, and everybody's experience is different. You know, there'll be some people who are older that have horrendous experiences and some people younger that have have a lot. that haven't, but there are other ways of helping with symptoms, but it can be very difficult if you don't know where to go, you know, even sometimes in changing diet can help.

But it can be very hard because there's so little information. And one of the things that I sort of heard a lot at this TREC stock event was the localised symptoms that occur. So you've already said that you're a new tract infections. A lot of girls, well, I think called girls because I feel old, they're not girls, young women, were. were saying about how vaginal dryness was really affecting them, and sex was a real issue, and they couldn't talk about it.

And if you remember, I asked just a show of hands, how many people had experienced vaginald dryness, and it was about half the room. But actually, when I looked around, most people had come with a friend who probably hadn't had cancer. So it was probably the majority of women who had it, but yet most of them hadn't had any treatment at all. And it's really important, you know,

because I'm not sure if you're aware, but one of the really effective treatments for vaginal dryness and also urinary symptoms is giving vaginal estrogen. So that's estrogen as a pezzary or a cream, which is different to HRT. It's different to HRT. So all it is, it can be given regularly in the vagina and it just seeps out into the surrounding tissue. So that's why it can help with the bladder. Oh, okay. But it doesn't get into the rest of the body. So, you know, when people are being told they can't have HRT, you can still use. You can still use. use local estrogen and it's available on a prescription. So that's something that can really transform a lot of people's lives,

but a lot of people don't know about it, including yourself, it seems. No, definitely not. I think, again, because it's different medical fields, there's this kind of like overlap. I think a lot of us as well feel like, in terms of like the vaginal dryness, we can't, you know, there's that stigma of talking about that part of your body and talking about sex. Yeah. Yeah, I think it can be, I think talking about vagina,

join us with medical teams are these oncologists that they're doctors and we know that they're brilliant in their field and it can just, yeah, it can feel very embarrassing. But it shouldn't though, should it? You know, as doctors, we can talk about anything.

Yeah. You know, trained to anything, but it's... But the problem is a lot of oncologists don't have any training or education about the menopause and they don't realize also that vagina on estrogen is very safe because it doesn't get into the rest of the body. Yeah.

And they also haven't been trained to ask. Because I think if you went to a clinic and someone said, oh, Emma, have you had any vaginal dryness or does it feel different down below, then you probably would feel easier talking about it as well. But if no one's asking the questions, you're not going to be asking. And it's a two-way thing, isn't it? It's really difficult. Yeah, it's definitely like a two-way street.

And not even just with that, but with side effects. in general, again, it's that feeling like they think menopause is a side effect, not an issue within itself, which for those of us who are really struggling, whether it is with vaginal dryness, that's like so painful that sitting down just hurts or whether it's bone pain or cognitive issues, it can really make you feel silenced and alone. and again it's that you don't know where to go. Like sometimes I don't know whether this is something I need to speak to my cancer team about. Do I speak to my GP about?

Yeah. It's a bit of a minefield. Of course, what's going on at the moment, our teams are under so much pressure. Not only dealing with us patients that they've had for a while, but also new patients and dealing with the backlog of cancer patients that I guess these things kind of would go to the wayside a bit because in their department, the most important thing is getting rid of cancer and people, and I completely understand that. Like, I don't begrudge them.

Absolutely, but then it should be a priority that there is a team that can help. And there are some places, not many, that do a joint clinic. So we're menopause and cancer clinic. There's one in Bath. And it's absolutely incredible to help women because, you know, you are going to be menopausal for a long period of time. And hopefully, you know, with time, the prognosis from your breast cancer will get better and better, the longer it is, obviously, as you know, since you've been diagnosed.

But the more important then your future health is. And we know that most women who've had breast cancer don't actually die from their breast cancer. They die from heart disease because most women die from heart disease. So we need to look at ways of improving our hearts. We need to look at how you can function better. And even just sometimes little things, like having a bit more information, someone to talk to, someone to say, well, you can use vaginal estrogen so you can sit down a bit longer.

Those little things can make a huge difference. Definitely. But you don't know how to get help. And sadly, you're not alone. It's not like I've picked you out and showcasing you as someone that's really struggling alone. And your minority, sadly, there's a lot of. of women and it really, this is why I'm so grateful that you're being so open on this podcast

because I think it will resonate with a lot of people and there has to be change. It's really important. You know, you're so young. You need to be listened to and you need to be helped. And I feel the system as it is at the moment is not addressing this in the right way. Yeah, I completely see where you're coming from, like whether it's, yeah, like some kind of like different clinic or even just being told like, well, there's this place that you can go to. There's these people you can speak to. Like I said, it's an oncology department. That's their priority.

And there is so much going on at the moment with the virus. Yeah. But yeah, just somewhere where you can feel a little less alone and get medical advice. Because it's all great that we can speak to each other. But, you know, we're doing random bits of research trying to find things we can fall victim to schemes, but products, being like, oh, this is going to help you. And there's a lot of marketing out there for products that, firstly, you don't know if they're safe, or you don't know whether they're effective,

and they also cost money as well. So you don't want to be spending money on things that aren't going to help. Definitely. One of the things that we've done recently, which is going to come out really soon, is written a booklet for young women who've had cancer about the menopause. And we've used one of my patients, actually, who was only 19 when she was diagnosed with the menopause. And it's all about the things she wishes she'd been told before.

Yeah. And it's incredible and it will be available under the resource. It's a section of My Manipuls Doctor website. And hopefully you can share that because it is about being found with the right information. Because I feel that we need to work together to try and help as many people as possible. And certainly that's an event where there were so many people talking, although it was a very emotive, quite depressing, subject we were talking about.

Everyone just seemed to go out, looking a foot taller, actually. They felt, I don't know whether your feeling from the audience was like that, but people felt, wow, I've been listened to. There's a reason that I'm feeling like this. And there are even some small things that might be able to help. Definitely, I felt very, I felt very empowered afterwards. Like, just hearing this conversation being had between, the panellists and different people in the audience.

Even though I didn't ask a question necessarily, it was like seeing that other people's questions were finally being answered and you could tell that so many of them were coming from places of like desperation of wanting an answer and kind of sad that maybe their GP or their doctor's office just didn't feel like the safe space to ask them. but, you know, a huge panel discussion was the place, which just says a lot in itself, yes, you know, about things like that. And I can't help but think that I'm a white woman that is treated in a central London hospital,

and I'm dealing with this, I'm going through this, how is it for people that are being treated in really small oncology departments, really small local trusts? What are they having to deal with? are black women, people of colour are having to go through. We know about racial health care inequalities within cancer specifically. But in terms of dealing with menopause side effects and medical menopause side effects, how are they being affected? What about trans people?

What are they going through? I think wherever you look, there are groups of women suffering. And, you know, the menopause and cancer, doesn't pick out certain type of women, does it? It doesn't care. But people are really neglected. And I think wherever I go, whichever group of women I speak to, whether it's ethnic minorities or it's people who speak different languages

or if it's different socioeconomic classes, there's always people suffering. And there's not one group, actually, that aren't suffering. So it's not like middle-class white women are not suffering. Absolutely there are people suffering can't be heard. Even really vocal women can't be heard. And then it's great. We've got social media.

So obviously that's how we could connect so easily. But there are lots of people that can't access social media. They haven't got a phone. They haven't got the internet. They haven't. And also there's a lot of misinformation out there. So for everything that is evidence-based, there'll be probably two or three things that are not evidence-based,

claiming that they can help or cure. And then that gives people false hope as well, doesn't it? Or people will sensationalise their stories and say how, absolutely awful some things are and actually it might not be for you so it's very difficult you want to be treated as an individual person don't you to be listened to yeah that would be of course in any kind of medical issue the dream that we are all treated as individual patients as opposed to you know like lists of symptoms hospital numbers things like that that is the dream but yeah we've got a long way to go in terms of like patient-centred care

Yeah, and that makes me really sad because it, you know, it's my dream as well, but it shouldn't be a dream. It should be reality. And I think the only way we can do it is by being really vocal and saying actually it's inexcusable. And, you know, I shouldn't really be saying this, but if you'd had prostate cancer, you would have had far more help than having breast cancer. You know, if you had been to a clinic and had hormone treatment, you would have a lot more health and support about problems with erections, problems with sex. your problems, it's very different. And why is it? Why are men allowed to even have more sex than women? It's not right. It's not fair. Can you imagine a man going through what you've gone through? No, they wouldn't be allowed to. No, I know. And so there is a gender inequality with all of this as well, which makes me feel really, really cross, actually, and really sad. No, definitely. Whether it's about menopause or another kind of medical issue, you hear a lot about women just kind of being told, like, oh, you know, you'll be fine. Take a paracetamil, you'll be fine. And yeah, I know in terms of my pain, I've definitely been told, you know, take some eye proof

and paracetamol and it'll be fine. And then three months later, they're saying the same thing. I'm saying, okay, but I can't take paracetamol every day for three months. You know, it says on the side of the packet, don't do it. And the paracetamol's not touching it anyway, so you can't help sometimes think if menopause or something, but, men went through how different would things be. Yeah, absolutely right. Of course. So we've got a huge way to go, Emma, but I'm, you know, I'm really grateful because, you know, you're young, you've experienced so much and then you've been prepared to share so much over half an hour of talking. And I really am very grateful because I'm sure

it's taken a lot of confidence to do this, but I really hope, and I'm sure it will have helped many, many people who can listen to this. So, but before you go, can I just, can I just, just ask for three take-home tips. So for three things that you think would really make a difference to you going forward. That would be quite easy to do in an ideal world. If that dream came true, what would be three things that you think would really help? I'd say in terms of hot flashes, layers are your friend. I know it's winter, but you don't have to wear that really big, giant coat. Maybe, yeah, a smaller, less insulated coat. but a better scarf, a thicker scarf, a thicker hat, thicker gloves.

Because when that hot flush comes, you can rip those off. Especially if you're in London and on the underground. I found that very helpful. Another one would be to definitely speak to people. You know, search out those people, whether it's your peers or medical professional, like Louise. because even just the feeling of knowing that you aren't on your own in this and that something can be done, it can make all the difference.

Like, coming away from that trestococry, and I was like, yeah, a foot taller, I'm going to speak to my team, we're going to do this. I was very like that. And third one, oh gosh, what would say one day? It's okay to miss your periods. I felt very weird about that for a while. I was like, oh, I really miss having periods. I really miss being able to a moment about having periods,

but I can't say anything. because everyone else is moaning about having a period. And I wish I was having one. Oh. And I've reconciled that myself now. And I'm like, you know what, girls, like my friends, I miss having a period. I miss bleeding. And it's okay.

And it's, I think that's so true. And the most important thing is to talk in the midst and to really explain how you feel because that really will make a difference. So thank you again, Emma, for your honesty and sharing so much. So thank you. Thank you for having me. For more information about the perimenopause and menopause, you can go to my website, menopausedoctor.com.

UK, or you can download our free app called Balance, available through the App Store and Google Play.