The Dr Louise Newson Podcast - 025 - Missing my Perimenopause - Katie Taylor & Dr Louise Newson

Episode Date: November 26, 2019

In this week's episode, Dr Newson chats to Katie Taylor. From the age of 43 Katie suffered for four years with debilitating perimenopausal symptoms, which had been misdiagnosed as depression by her doctor.   It was only when her father, a breast cancer professor, suggested that he thought her symptoms were more likely to be hormonal, did she finally get the right diagnosis from her gynaecologist. Within a month of being on the right treatment (HRT) and off the antidepressants, she felt like her old self again.   It was her anger and frustration at having wasted so many years of precious life, that led her to set up an online virtual coffee shop: The Latte Lounge (Top Tips For Women Over 40), to share her experience with others. Katie and Dr Newson discuss how commonly women are misdiagnosed and then are not receiving the right treatment for their symptoms.  www.lattelounge.co   Katie Taylor's Three Take Home Tips: Print off this symptom checklist and the NICE menopause guidelines and go to your doctor feeling empowered and armed with information. Know that HRT should be the first-line treatment, not just anti-depressants. Remember you're not alone! Join the Latte Lounge or Menopause Support and talk to like-minded women.

Welcome to the Newsome Health Menopause podcast. I'm Dr Louise Newsom, a GP and menopause specialist, and I run the Newston Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. So today I have great pleasure of introducing Katie Taylor to you. She's come up from London to my clinic in Stratford-Pon-Avon. And I've known Katie, not that long really, but I feel like I've known you for longer because we've done a lot of. of head banging against the wall in frustration, a lot of sharing emotional stories with,

so thank you very much for coming, Katie. Pleasure. Thanks for having me. So I can't even remember when we first met. I think we met at Meg Matthews launch, actually, of Meg's menopause. That was the first time I came up to. Yeah, that's right. I think we've probably contacted through maybe social media beforehand. And you've got an interesting sort of personal journey, and now you're doing a huge amount of

work to really help empower women, which is fantastic. So just talk a bit, if you don't mind, about why you're here. What journey has brought you here today? So my journey was, you know, I'm a mum, a busy mum with four kids. I just stop you there, four, four children. Yes. So that is amazing. I've got three and I can barely manage. So any of my patients who have four children, I have complete admiration. So, sorry, carry out. No, so yes, everyone tells me I'm mad. Yeah, so, and, you know, I was very capable and, you know, I could, I managed to juggle, you know, work and family and, you know, everything pretty well. Prided myself on it. In fact, people used to say, I don't know how you do it, but it didn't come difficult to me. But what I noticed, by the age of about sort of 43, is I used to go on the school run and I used to sort of feel like I had a bit of brain fog.

And I thought maybe, you know, I've just got a virus. And then I'd forget words and my friends would make fun of me saying, oh, you're always forgetting your words. You know, you're an old lady. And then I'd get very teary. And I kept going back to my doctor saying I'm very teary. You know, I keep forgetting words. And they just said, well, you know, you're juggling too much. Why don't you give up work or go part time?

And this kept going on over a period of four years. I'd keep going back to... Four years? It's a long time. It's a very long time. The worst bit for me, there were two pretty poor times when my doctor said, well, actually, you're now coming with heart palpitations. I'm beginning to think this is all in your mind.

So a physical symptom that you really can't make up? Well, and I've been sent to a cardiologist and he said, there's nothing wrong with you. I've been told I was suffering from depression. I was put on antidepressants. Did you think you were depressed at the time? No, because, well, I knew I was crying. I've become a hermit. I was a former shell of a woman.

I wanted to stay home. I never wanted to socialise or see anyone. You know, my husband thought it lost his wife. But I couldn't work out why I'd be depressed. I had, you know, four great kids, a lovely job, lovely husband. You know, we didn't really have money, worries too much. So I thought all... What's going on?

Yeah. What were your periods doing at this time? My periods were a little bit erratic, so they weren't really heavy. They definitely weren't sort of how they're... They used to be. They had changed? They changed. And had any of the doctors ever talked to you about your periods?

Not once, no. And I presume you're, no disaffrette, but like a lot of women who in their early 40s didn't think anything related to your hormones? Not at all, because I thought, well, menopause was never mentioned, and I just thought that happened to women in their late 50s, and I was having periods. I certainly wasn't having hot flushes. Had you heard of the term perimenopause at that stage? No, never heard of it.

Well, you know, luckily for me, and, you know, I say luckily, it shouldn't have got to this stage. But, you know, my father's a breast cancer professor, he's a retired surgeon now. And he said, I just one day went around there after four years crying on the, you know, on the chair saying, I just don't know what's wrong with my dad. I think I'm going mad. I don't understand it. And he said, I think this is hormones. You need to go and see gynecologist who specialises in hormone health.

What did you think then? Did you think he was a bit crazy talking about that? Well, I just thought... Well, I thought I'll try anything, to be honest. Absolutely, because you're probably desperate. I was desperate. And I tried every, you know, everyone was saying, well, maybe your irons low, you know, take this, this and this.

So I was desperate. And I went to see this guy, and he, and within half an hour, she had said, oh, this is classic perimenopal symptoms. She didn't even sort of... She didn't even raise an eyebrow. And I said, what's bad? And she explains, you know, that 10 years before menopause, you can, all these symptoms

can happen. And she explained that my estrogen levels were probably on the floor. And it was literally, it was a light bulb moment for me. So you didn't have any blood tests or anything fancy to diagnose that? It was really just from her understanding and listening. Yeah, because she said to me, you know, over the age of 45, she was actually the lady who wrote the nice guidelines actually. since she said to me, you know, the nice guidance say that, you know, we go by symptoms over a lady of 45. Which is really important.

So some of you that might not know who are listening, the nice guidelines are the National Institute of Health and Care Excellence. So they're really government-induced guidelines. And the first ones in the menopause came out in November 2015. And they're very clear about diagnosis of both the perimenopause and menopause. And if a woman's over the age of 45, then blood tests are unnecessary. If the ladies between 40 and 45, they might be helpful, but we don't always do them. Under the age of 40, often we do, because it's important to get the diagnosis right. So I'm sure many of you have had friends or even yourselves that might have had blood tests

and being told they're normal, so therefore it's not your menopause or perimenopause. And as you know, Katie, there are some days probably where you felt better than others. So you could have had a blood test and been said, oh, well, actually, your hormones are normal. And they might have been on that day, but a few days later they won't be. And there's, you know, £9.2 million a year is wasted on inappropriate hormone blood testing. You know, and as we know, there aren't many NHS-led menopause clinics. You know, I personally can't get a job in the NHS because there are no clinics local to me. So it's really important that women aren't asking for blood tests.

It's a clinical diagnosis and the questionnaire that you can download from my website by just searching questionnaire. is a good place to start, isn't it, so people can tick? And perhaps do you think if you'd been shown that questionnaire, and someone had said to you while your period's changing, do you think that light bulb moment would have happened earlier? I wish it did. I mean, I had the light bulb moment. I cried with relief that I wasn't going mad.

And then I became incredibly angry. And if I had walked into that doctor on day one, and they'd said, oh, hang on, we've got a woman over 40. And they gave me a symptom checklist and said, are you suffering from any of these, I would have probably ticked 20 out of 25 or 30. It would have saved me four years of misery and, you know, my family were affected, my friends as well.

So what's made you get better? Because you don't like that now. No. So she immediately put me on HRT. Are you worried about that? Did you think, oh, I'm too young to be on HRT? Or are you so desperate for help? Look, I'm very, I'm different from others in that, obviously,

You know, I had my father who was, you know, an expert in women's health who reassured me. My gynaecologist reassured me. My mum was probably one of the first women to ever be put on HRT. And she'd been on it for a long time. So I wasn't worried and she explained the risks and benefits. And it was a no-brainer for me. And within about a month, it was like it had reversed, taken me back to my 20s.

So that must have been an amazing feeling when you've been struggling for so long. to have a treatment that works so quickly. Yeah, I mean, it wasn't instant, but within a month, I would say, I just remember that the moment of clarity was I hadn't laughed in four years and I couldn't understand why I didn't find things funny that everyone else find funny.

And I remember going to see, it was a comedy musical and laughing and laughing and laughing. And my husband turned, I get very emotional. And he said, I've got my wife back. And I said, that's the first time, you know, I've laughed. Yeah.

Which is quite something, isn't it? Yeah, because you think, you just think you're going crazy and I think you're never going to get back to the woman you were. No, and it's so hard. And a lady said to me recently, she was driving and she was looking at the mirror

and she said, gosh, I could see my teeth. I haven't seen my teeth, for ages, because I was smiling. Aw. I don't know. I said what to say. It is a very, because I think, for all of us, you know, men and women, we like to be in control, and when you're not in control

of your emotions, it's really hard. And certainly as a GP, I've helped and treated a lot of people with proper clinical depression, and that's very rewarding. But I've also seen and spoken to thousands of menopausal women who haven't been depressed, but have been incorrectly given antidepressants. But it's so scary when your mind doesn't work. And, you know, I found when I had symptoms, I was low but I was quite irritable. I was crotchety. I was short-tempered. But I had no motivation. And most people who know me know that I am motivated. I want to work. I want to work hard. But I just couldn't be bothered. And then you end up staring at the walls and thinking, no, I'm not going to see my friends. No, I don't want to. It's easier to say no. And then you think,

this isn't, I'm just existing really. Yeah, that was a existing. It's not a real life. It's a really weird. And you're just sort of sinking lower and lower and you don't know why. And it's It's weird, isn't it? It is weird. And look, I'm a bit like you that I was always someone that had boundless amounts of energy. And I think the anger made me want to do something. So a lot of women just, you know, they want to get better and then they want to go back to their old life. But it's driven me to want to make change and to educate and empower women so they don't have to.

To go through what you've done. Yeah. And I don't say that lightly. I feel really. I know you do. Passionate and angry about, you know, if you, I'm one person and you can times this by, I don't need to tell you, but thousands and thousands of thousands. Well, I think millions. Because it's global.

It's not a UK problem, is it? So every woman, if she lives long enough, will go through the menopause, the time when our hormones reduced because our eggs run out. Sometimes it's natural, like in the case of you and me, but sometimes it can be forced upon us or upon women if they have their ovaries removed, is it ophrectomy. sometimes it's because of cancer treatment. So radiotherapy, chemotherapy can cause a menopause, which is often a permanent cessation of the hormones.

And it happens to all women. It doesn't pick out certain ethnic groups. It doesn't pick out certain social classes, all of us. And not everyone will get symptoms, as you know, only about 25% of women escape, I think. But I think probably even the numbers lower because I think a lot of women have symptoms such as yours and they're not diagnosed properly.

Sometimes people just feel a bit more anxious, a bit maybe having migraines, or just recurrent neural tract infections, cystitis. They don't realize it's related. But it is so important for our future health as well, isn't it? So I don't know whether you realized at the time that your lower hormone levels are increasing or were increasing your future risk of heart disease, osteoporosis.

And that's something we're not taught about, are we? No, I had no clue. No, didn't even enter, you know, my head. Yes. You know, now I, by default, I now know a lot. And I just, I mean, this is what, so the day I came home and had my light bulb moment with my gynecologist and I sat on my bed crying with relief, that's when I turned to Facebook and thought, I need to see if anyone else has gone through this or if it's just me.

Because I still thought it was, it was just me. Yes. And could you find anything? There was only Facebook groups for young mums, but there was no one talking about sort of midlife issues, women's health issues. So I thought, well, I'll start my own group and just see if there's any sort of appetite for other people to. Well, within that day, I had 2,000 new members. It was like an avalanche. And I was completely overwhelmed with messages from people say, that's exactly what's happened to me.

You know, I can't, that's, that's me. It's like a light bulb moment. And that was three years ago. We've now got, you know, almost 20,000 women. Amazing. So this is through Late Lounge. So I called it the Late Lounge Facebook group because the best conversations I have with my girlfriends

and we work out all of our lives problems, always in a coffee shop. So, you know, I'm not, you know, particularly or not towards lattes. But I just wanted it to feel like a virtual online coffee shop environment where women, it's a women's only group, so it was safe. and we could talk about all midlife sandwich generation issues.

So you can just find it by searching Lutee Lounge on Facebook. Yeah. I mean, the strapline is top tips for women over 40. The problem with having a very large Facebook group is that you then get a lot of well-meaning women giving advice that's often inaccurate or dangerous. That must be hard to manage, is it? It's hard to manage, and that's why I decided to set up a website

and pull together a group of sort of medical advisors and contributors so that I could keep these women safe because I felt very responsible for them. I didn't want them to come to the Facebook group and go off and try all these weird and wonderful things and waste years of life like I do. It's very hard, isn't it? I mean, as you know, I'm very passionate about giving evidence-based, non-biased information. And we've both seen over the last year or two that there are more companies coming up that are trying to promote certain products.

Because as you know as well, like you already. said you try various things before that you're desperate to feel better. So we are, it doesn't matter how much it costs sometimes because you can't put price on your health. And so sadly a lot of companies are trying to exploit that. And so everyone or a lot of people have got a bit of a hidden agenda they're trying to. And some women will find that some of these alternative treatments might help. And they certainly do have a role. But it has to be with the right advice and the right considerations of why they're taking them, what they're taking, and how they're going to maybe help their future health. And it can be very difficult for women to know what's right and what's

wrong. And I think suddenly on Facebook, you don't know who these people are, do you, who are writing? So there's some people who have the most amazing knowledge and experience and others maybe have just one bad experience with a doctor or a treatment that they've taken, and they're telling the whole world that everything's terrible. And that's very difficult. And that's very difficult, isn't it, to tease out? It is. And I think, you know, Facebook can be great. It can also be quite dangerous. And I wanted it. To me, it's like a community I would want to live in. So it might be a virtual community, but I want them to feel supported as they are in the real world. So if they're coming with questions, and it's not just about perimenopause and menopause anymore, but it's all

sorts of midlife issues, you know, from children's mental health to our aging parents. I want to be that sort of center point where I can then signpost them safely to either professionals or to really good resources like your own. And, you know, I do, I feel a sense of responsibility to this woman, but I just want them not to have to go through those years that I did. So, you know, I've learned the hard way, but I think I've always wanted to somehow find a way to carry on my father's baton. He's spent his life, you know, helping women with breast cancer. And I guess I'm a frustrated doctor. I was never very good at science, but I was always quite good at communication.

So I linked the website and the Facebook group up with the Eva Pillar. Dad and I actually went to have a look at their research labs because they do such amazing work, you know, in women's gynecological health. Yes. And I thought if I can use the platform as a way to not only empower women and give them, you know, scientific evidence-based information, but we can actually have events that will raise money for cancer research. Then there's a bit of continuity there. Which is really important. So we've appeared. I've done some events for a very good charity for

gynaecological cancers and it's a lot of their work is about improving awareness, isn't it? Yeah. Which is so key. But I think it's interesting, isn't it? So your father was such an eminent breast surgeon and he did a lot of the tomoxifen trials, didn't he, right at the start? And he actually was very key in introducing breast cancer screening. But everyone is worried about HRT because of breast cancer, aren't they? So you'd think that a breast cancer surgeon would be very anti-HRT because he'd spent his whole life dealing with women who have had breast cancer. And it was interesting, because when we first met, I didn't know who your father was and when I found out I was

trying to be your best friend because he's always been a great idol because he's very outspoken which is great but he's incredibly clever and he just has slightly different thoughts to some people because he sits back and reflects and weighs up the evidence and he is very pro-HRT which is quite surprising but I think like most of us he realizes and knows that most women who have had breast cancer do not die from breast cancer which is fantastic A lot of it because of some of the amazing work he's done. But most women who have breast cancer die from heart disease, don't they? Yep.

And what does taking HRT do? What does it reduce heart disease risk? So it's really important to look at the bigger picture, isn't it? Yeah, absolutely. And osteoporosis, it helps with, you know, a lot of women die from that. And also, I mean, you know, obviously I'm not a doctor, but from what I've read and you can tell me if I'm wrong, it helps with dementia, which is probably one of the biggest killers in women. that wouldn't enter my head.

No, that's right. I think there is. And because we're living longer, thankfully, you know, as you know in the Victorian times, we died quite soon after our menopause. It's about how we live our life and how healthy we are. And it's not just about an age that we die. It's about our quality of life. And also it's about disease reduction, isn't it?

We want to prevent diseases. And certainly I've worked in the NHS for a long time. And it's changed. It's very busy, as we know, the resources are sky. scarce and anything that we can do to get away from doctors. And certainly since you've been on HRT, you've probably visited less doctors than you had in those four years. I haven't been, touchwood, I haven't been to a doctor in, I mean, I've now been on it for a couple of years. I must say I had to have a hysterectomy, we'll talk about that in a minute, but I haven't

needed to see anyone, you know, for anything to do with any of those symptoms. So if you think of the money that you personally spent on the NHS with your various investigations, your referrals for your palpitations, seeing a cardiologist. You know, that's unnecessary really referrals and we see it a lot. I've just done a big study of 5,000 women and we see that average number of consultations is six, some have more than 10, just to get the diagnosis, which, as you know, we can diagnose in 10 minutes if we've got the right tools and knowledge. So it's very frustrating and I know we've already said we bang our heads against the walls a lot, and certainly we work closely with Diane Danzabrinkies and the main.

amazing campaigner, but I can hear your frustrations and so many of your message. Because you get some messages from women, don't you? I mean, Diane and I, what happened was, it became so overwhelming for me that I, because you and Diane very kindly are offered to write for the website, I actually spoke to Diane and said, look, can we link our Facebook groups together so that, you know, women can talk about everything when they come to us, but if they just want to focus on menopoles and get, you know, real support. They can go to Diane.

And what's her is that's menopause support? Her's is the Menopause Support Network. And we've, yeah, worked really close. We were both in Westminster on Wednesday with her make Menopause Matter campaign. The thing that frustrates me the most is for us, I'm, you know, I'm a lay person. To me, it's so simple. And yet there's so many, you know, complications. You know, I can't believe my nephew, who's a fourth-year medical student, doesn't know anything about menopause.

and he's going to be a GP next year. I know. And I just think, you know, doctors are so busy and they can't be specialists in everything, but I just, you know. Yeah, absolutely. I mean, as you know, I do a lot with education for not just doctors, not just GPs, but also nurses, pharmacists,

physiotherapists as well, are really important people who, but any doctor that sees a woman needs to know about the menopause. It's not a women's health. It's not a gynecological problem. So your cardiologist needs to know that palpitations are a potential symptom of the menopause. Neurologists need to know that migraines are a potential problem. Urologists need to know that recurrent cystitis. Rheumatologists need to know that joint pains, muscle aches, can be a symptom of the menopause.

And so this is a failing, as you say, in undergraduate education. It should be talked about and discussed there because every woman will go through the menopause. there's a doctor I learn a lot which is great about pregnancy, about contraception, about hypertension, about diabetes, really important things. But actually not every person will get those. But actually every woman, unless sadly she has an early death, will go through the menopause. And because there are health risks with the menopause, it's not just about trying to help ladies who have hot flashes. It's really about trying to think about ways of replacing the estrogen if we can with HRT, or if not, looking at preventative ways of reducing

risk of these conditions through diet, through exercise, through well-being, through relaxation, through sleep, all these things. So we can improve our physical health, our mental health. And that's something that your nephew probably has never even thought about. No, and I got the most beautiful email last night, which actually really brought tears to my eyes from a man. And he said, your website by googling perimenopausal forums. And he said, I'm beside myself because my marriage is on the brink of collapse because my wife is suffering terribly. And I know, I know she's suffering, but she refuses to get help because her doctor's told

her she's depressed. And we're literally at the brink and I just want to be able to help her. And he was so desperate. And I thought, you know, the men, the boys need to, you know, know, men need to know. Absolutely. I think it's really key, isn't it? I think, you know, you've got teenagers I have and they learn a lot about sexually transmitted infections. They know a lot about drugs.

It's really important that they know these things. But not every child, thankfully, will be taking drugs. Even not every child will have sex. But actually, they all will know a woman. So they all need to know. And in fact, my 8-year-old this morning was saying, to have a great day. It's World Menopause Day, Mummy, because there's so many listening. We're recording this on World Menopause Day.

And I thought that's very sweet. She's eight and she knows. But she's, it's exciting for her. She's not worried about her menopause. And I was at an event last night in London and there was a man talking about how important it is for men to know. And he said, I sat down with my wife and we really talked about what the menopause means because she's going to have to go through it. We know it's going to be a hard time. I, nine-year-old sat down. So we had this conversation and it was a very negative thing. And I thought, actually, it's got to be a positive time in our lives, hasn't it? It has and if you get the right treatments, you can then just get on with your life. You know, it doesn't define me. It's actually now that I'm on HRC, I've got so much energy, so much brain clarity, and so much drive to do something in my name. You know, I've just turned 50 and I feel like in some ways I've now found my purpose in life to do this.

It's amazing, isn't it? And I just want, you know, everyone else to feel, you know, this good. Yeah. So I think it's really important for people to get the right information and not feel alone because I think that's a big message that's come through on this podcast is about how lonely you felt you withdrew from society. And we're very, I think social media is a double-edged sword, isn't it? But it can be used to our advantage.

Certainly when our parents were our age, they didn't have any internet social media. So even those women who are feeling very socially isolated can still go online. They can look at some of the resources, they can go onto Facebook, and just find out the right information for them. but it's very important that they see what the sources of the information are.

Yeah, absolutely. So before we finish, can I just ask in my typical way the three take-home messages? So for maybe peri menopoles and a menopoles of women who have maybe had a light bulb moment listening to this podcast, what would you say to those women? I would say to go to your website and Diane Danza Brinks website and print off the symptom checklist and have a look of, you know, tick all the symptoms that yourself, I would also print off the nice 2015 guidelines and just, you know, you don't have to learn them off by heart, but familiarise yourself with them and then go empowered to your doctor because you've only got a 10-minute appointment

and say, look, I've read some of these blogs on Louise Newsome's website and the Luttee Lounge and the Menopause support network and, you know, and the BMS website as well and say, I think I'm suffering from this. The doctor will probably be quite pleased. I would like to think. Yes, because you're guiding them. And I think in that 10 minutes as a GP, if you want to help, all the doctors obviously want to help their patients.

And if we can empower women so they can get really good consultation, then that's key, isn't it? Absolutely. And if you've been told that everything else is fine with you, to know that HRT is the first-line treatment, not antidepressants, because that was a big thing for me, because antidepressants just numbed my feelings.

It's very common when they're not needed. Antidepressants can be very useful for clinical depression. And some women need antidepressants as well as HRT, but they're not first-line treatment, which is really important for all. And my main thing is you're not alone. You know, join my Facebook group, join Diane's Facebook group, have a look at all of our websites. We're all in this together and there's nothing we haven't heard. So, and we will do our absolute, you know, best and most for you to signpost you to get, support you need.

Thank you. Brilliant. Great messages there. upset you earlier. I get very emotional. But it's been really kind. So thanks coming up to share everything with us. Thank you, Louise.

Thank you. For more information about the menopause, please visit our website www. www.menopause doctor.com.