The Dr Louise Newson Podcast - 007 - Campaigning for improved menopause care - Diane Danzebrink & Dr Louise Newson

Episode Date: July 23, 2019

Diane Danzebrink is a psychotherapist, menopause expert, wellbeing consultant and also a great friend of Dr Newson. She is tirelessly campaigning for improved care and support for menopausal women having personally had a dreadful experience of the menopause after an operation to remove her ovaries to the extent she became suicidal. Diane always promised her husband that if she ever improved then she would campaign and fight so that other women do not suffer in the way she did. In this episode, Dr Louise Newson and Diane discuss the #makemenopausematter campaign Diane has introduced, which now has an impressive 27,000 votes. The aims of this campaign are to improve menopause education amongst doctors and to raise awareness of the menopause within the workplace. The third aim of the campaign has been achieved – which is discussed in this podcast! Dr Newson and Diane also talk openly about the challenges they are experiencing in improving menopause care and education globally. Diane's Three Take Home Tips for Getting the Right Menopause Care: If you are in your early 40s, educate yourself and get a general understanding of what menopause is and what it might bring. Menopause does not have to be negative! This time in your life should be for reflecting on your life and re-setting your goals for the future. If you're listening and are currently going through the perimenopause or menopause, you are not alone! There are places, such as Menopause Support, where you can talk to like-minded women and get support. There are also so many resources such as menopausedoctor.co.uk where you can find evidence-based advice. Visit the Menopause Support website here

Welcome to the Newsome Health Menopause podcast. I'm Dr Louise Newsome, a GP and menopause specialist, and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. Hello, I'm really very excited today because I have opposite me a really good friend and campaigner and fellow spokesperson at Diane Danzabrunck, who I'm really, We were just working out actually. I haven't actually known for as long as I think I've known. And so we've had a really good meeting here in my clinic today. And I've hoiked her upstairs in a hot summer afternoon to ask her to share this podcast with me. So hi, Diane. Hello.

Thank you for coming. So we were going to talk about how we met, but we can't, we didn't decide or realize how we met. But we have met over some menopause work. We have. And we have a pretty much shared, rested interest. in improving menopause care. I was going to say in the UK, but it's actually worldwide. I think it's worldwide, isn't it? Yeah. And we both realised that we've started something that we can't stop. It's a bit like a train, isn't it?

We don't quite know where it's going. So rather than talking about all our uncertainties, I thought we would start from the beginning because you haven't always been interested in menopause. If I'd met you 10 years ago, you wouldn't tell me that's what you'd be doing, really, would you? No. No, absolutely not lovely.

So tell me a bit about before you started with menopause work, what you were doing. Okay, so I trained as a counsellor a long, long time ago, and I finished my training and thought, well, I wasn't impressed with that. So I don't really think I can practice that, so I'm going to go off and do something else. So I trained to be a lazy, you know, a lazy, you know, I'm going to do something else. a laser therapy practitioner. Really? I didn't know that. And I mainly treated animals, horses and dogs, some people.

Okay. And then in 2012, I was really quite poorly. I'd been unwell for a few months, just sort of undiagnosed unwell. I'd lost quite a lot of weight, feeling really lethargic, really tired, etc. etc. And on one particular occasion, went to my doctor and she took my blood and she rang me the next day and she said, I need you to come back because you're CA125, which is essentially a marker for ovarian cancer. But it also marks out lots of other things. Yes. Which are not nearly as scary. Absolutely. But she was particularly concerned about that because my mother

had had ovarian cancer 25 years before. So then you got into panic mode. So then I thought, ooh, maybe that's why I'm not well. Went to see her. She did some more blood tests, sent me off to the hospital where I had all sorts of scans, et cetera, et cetera, ended up sitting in front of a gynaecologist who said, you have lots of cysts on your ovaries and it looks like you've got a huge fibroid and we've done your bloods again and your CA-1-2-5 is raised again.

Anyway, long story short, I ended up having a total hysterectomy and bilateral euphrectomy. So womb, both ovaries and my cervix removed. And it was because they thought that I had ovarian cancer. As it turned out, I had stage four endometriosis. I had adenomyosis. I had a huge fibroid. And I did have complex cysts on both my ovaries. But in the words of the gynecologist, she said, I think we've done the operation just in time.

So that was hugely fortunate, obviously put me into a surgical menopause. Did you know anything about menopause at this day? The only thing I knew about menopause was that my mum had gone into menopause when she had her hysterectomy for her ovarian cancer. But I also knew that she had been given hormone replacement therapy, which was derived from horses. Yes. And so I'm a horse lover and was a horse owner. And so 25 years previously, I had thought, well, I'm never having that. No.

Because that's right. So HRT was made from pregnant horses urine, wasn't it? And in some types still are, but the majority aren't, which we'll talk about a bit. So HRT wasn't on your radar, but you didn't really know what the menopause meant. No, I thought it was hot flushes. Yeah, which is what a lot of people do, which it can be, obviously. So had everything taken out, which was good news, nothing too serious. And then you thought, hey, I'll carry in with my life.

Yeah. Yeah, so I was told that I would not get to see a gynecologist for a follow-up appointment. Because everything had gone well. Yes, apart from the fact that my bladder had been nicked. So I ended up with a catheter for a couple of weeks, but that was nothing compared to the operation. And I was told to go and see my doctor in six weeks time. So during that six weeks, I made some inquiries, did some research and thought, okay, well, I probably should sort of support my system in some way, shape or form. I will go and see a nutritionist in London.

did that. It was quite expensive and I ended up with seven different pots of things to take and I don't like swallowing tablets. So that was quite tricky. And I did see my GP who I sat it and to be fair my GP had been absolutely amazing getting me through quite a scary time coming up to the operation

but I just sat down in front of her and she said, okay, so HRT. And I said, no thank you. And that was where the conversation ended. So in hindsight, I think she thought that I would have had the information from the hospital, from a nurse, from a gynecologist, whatever. I didn't. Nobody ever spoke to me about the effects. This was before the nice guidance.

It was. This was in 2012. So the nice menopause guidance, the National Institute of Health and Care Excellence Guidelines came out in November 2015 and they clearly say that women should be given information before having their ovaries removed. Sadly, we know that still doesn't happen.

But before this time, it was hit and miss. So you were one of the unfortunate ones, hadn't got any information. GP didn't maybe realise that. Yeah, and I think she thought that I had the information and I was making an informed choice when in fact I hadn't had the information. So that was about six weeks after the op.

And to be honest, I felt okay. I thought, oh, these herbs, vitamins and minerals must be doing the right thing. And things over the next few weeks, things sort of spiraled out of control. So I started to become really anxious. My sleep was horribly broken. I was feeling really heavy, physically heavy and lethargic. I started to have these sort of feelings of doom and gloom and dread, couldn't really focus on my work,

was becoming very introverted, very withdrawn, had started to have panic attacks during the night, would wake my poor husband who was trying to function normally, until it got to the point where this probably took, I don't know, probably four or five months, but until it got to the point eventually where, I just felt so useless and hopeless and worthless that I plucked up the last couple of shreds of my courage and rang the doctor's surgery and said to the receptionist, is there some sort of menopause support service?

And she said, oh, I'm sorry, my dear, there's nothing like that. And I was just at the end of my rope and just collapsed into the sofa sobbing. and said to my husband, I just can't believe that there's nothing. With 51% of the population, everyone's going to go through it, and there's nothing out there. And I said, if I ever feel well again,

I will make damn sure that I do something to change it. Things went pretty much downhill from there, and essentially you've heard this story before, but it got to the point where one day, I got my four little Jack Russell's. And I'm still not sure how I did it because my husband had imported my mum to watch me like a hawk

because he was so scared of what I was going to do. But I managed to get the four dogs, put them in my car, and I hadn't driven for weeks because I was too scared to drive. Got in my car, drove, wasn't really sure where I was going, didn't get too far,

but not too far from where I lived, was a dual carriageway. And I got onto the dual carriageway. And I was, you know, going along and just decided that I was too much trouble for everybody. Life, if it was going to be like this, wasn't worth living anymore. And came within a hair's breadth of putting my car in front of a lorry. And what stopped me was Henry, the Jack Russell, who always gets a name check. he barked and it broke my train of thought and i i mean it was a stark realization of what i'd nearly done

and i gripped the wheel even tighter and because i was shaking and drove the short distance home and told my husband what i had nearly done and he got in touch with the doctor's practice and said you've got to see her today we're absolutely desperate and i went back and bless her. The doctor saw me at 8 o'clock that evening. And I sat down in front of her blubbing and she said, okay. And I said, before you say it, I'm not taking that horse wee and I don't want antidepressants. I'm so terrified of being on antidepressants for the rest of my life. And she said, no, no, it's fine. You have a choice. There are different types of HRT. There's a plant derived type of HRT. But, and in that moment, it was just this enormous,

relief that there might be some hope for me. But that was the first time in that journey that anybody had ever said that to me. And I'd come really close to taking my own life. So in that moment, it was huge relief. And she gave me a prescription and I put the HRT patch on that night. And I would say probably within 48 hours. I noticed a difference. And it was as though I had been living under this really big black cloud

wading through waist-deep treacle every day trying to survive. And all of a sudden the sun came out. That was how it felt. Amazing, isn't it? And that really, I was angry then because I thought, okay, I've been really fortunate. You know, I have, I've had the moment. most amazing support from my husband, who I really have put through the meal. My family have been

amazing. What if you don't have that? What if nobody ever gives you that information? And then it's so it started to make me research how many women were struggling and suffering, etc. And I just found this underground movement of women. And actually a few men saying things like, please help. I think my wife's going mad and I thought hang on a minute this just can't be right and then I started to research into the different types of HRT and the sort of information that was out there so this was sort of early 2013 the sort of information that was out there for women and I thought gosh actually there isn't a lot there's not a lot of factual evidence-based stuff and I was literally learning every day and I thought okay I need to do something about this.

I was, because of the experiences I'd had, I decided to go and put myself into therapy for a while. So I saw a therapist myself for a while. I really liked the way she worked. It was very proactive. She didn't just sit there and nod at me and say, uh-huh, a lot. She was in there with me and it was quite goal-orientated, you know, sort of what did I want to do with the rest of my life?

How had this experience informed how I wanted to live the rest of my life, etc. Yeah, and I loved it. Really enjoyed it. And I thought, this is what my training should have been like 20 something years ago. So I thought, okay, I know what I want to do. So I did another psychotherapy diploma. And I also found out that as a therapist, I could do some professional. nurse training in menopause, even though I'm not a nurse by training, I could do some

professional nurse training. So I applied to do it. I was accepted to do it. Absolutely loved it. Really enjoyed it because I'd read so much. It was just really confirming lots of things that I'd read. And I thought, do you know what? I'm going to set something up that means that women have got a port of call. They've got somewhere to come. So if anybody's feeling as desperate as me, so I set up something called menopause support. There's now also something called the menopause counsellor, which is me. And I just started to get this most enormous, you will know this, this enormous daily feed of emails and messages and the amount of people who were saying, can I please talk to you, can I book an appointment to speak to you,

et cetera, et cetera. And to be honest, I don't think I had any clue of the scale of the problem. No, I think you're totally, I mean, I had no idea at all as a GP. I only had before come into contact with my own patients, which I hopefully dealt with well. And then suddenly I, as you know, opens a clinic, which is private because I can't get a job as an NHS, menopause. specialist. There's no funding in the NHS for one. People coming from all over the country. And then social media is fantastic, but it's also quite scary because women, aren't they, are from, it's all over the world, are telling us time and time again how much they're struggling. And your story, I didn't cry this time because I've heard it enough times, but it does move me to

tears. And it moves me to tears thinking that you felt like that, but it moves me more to tears because I think of all the women worldwide who are suffering. Obviously, your story is extreme, but we do know that the suicide rate peaks in the early 50s, which is the same age as the menopause. And we do know that the psychological impact of the menopause is huge because of the hormones, estrogen and testosterone that can work in a female's brain.

And without them, it's a real struggle for a lot of women. We know that a lot of women are given antidepressants inappropriately. there's not good evidence that they work to improve low mood. So I feel really surprised actually how many women are needlessly suffering. And I think that's what drives us both because there are treatment options and often replacing those hormones. Like you say, because it's a very simple replacement, you know, you found when your body had those hormones, it was quite quick. And you had symptoms for months. Yeah, absolutely.

when you think about it now, you know, sort of, I mean, obviously we know now that if a woman's under 45, she absolutely must have replacement hormones. But when you think about it, essentially all we're doing is we're replacing something that would be there naturally. So by removing a woman's ovaries where the majority of her estrogen and testosterone are produced, you know, it's just, for me, it's a complete no-brainer. Yeah. I don't get it. No. It's so, simple. And I think that's the thing that frustrates me the most is having learned as much as I've learned, obviously you and I have linked up, shared lots of anecdotal stories of you with patients, me with clients. You know, the amount of women that I see who tell me, so when I see them

initially, I'll ask them what sort of medications they're taking, six or seven out of ten will tell me they're on some sort of antidepressant. And I think the thing is there is such a poor understanding of the psychological and emotional impact of menopause. I mean, you know, we don't understand the physical that well. But as far as the psychological and emotional I are concerned, it's pretty hopeless at the moment. Yeah, and I think certainly, I'm sure many of you've heard before, I didn't have any formal menopause training as an undergraduate or as a postgraduate.

And if anything that you do get taught, it's about hot flushes, the vasemotor symptoms, night sweats. But actually those are annoying, but they're not the ones that affect people the most. So actually, psychiatrists aren't taught about menopause. And other physicians aren't taught. And it is so important that we know so we can understand and diagnose properly, but also that we can recognise the symptoms in ourselves, in our families as well. Because for your partner, it's very scary. He probably felt completely. hopeless. And even we, I see partners all the time and they say, well, this isn't the person I'm married. She's changed and yes, we all change with time, but this swimming intracial

experience that you quite eloquently described is we see all the time and it's, you feel almost like a failure when you're having these symptoms because you so want to feel better. Yeah. But something's almost like you're drugged. You can't do it. I think it's also that, you know, sort of that basic human need to be in control. Yeah. And you feel completely out of control. But because you don't understand why you feel.

So, you know, kind of in therapy very often when you're working with people, if you can give them an understanding of why maybe something that's happened to them historically has made them feel that way, there's sort of a light bulb of, well, it isn't instantly better. but now I understand it. With this, because I didn't understand why it was happening, that just compels the anxiety. So it just makes you feel more useless. Which is really scary.

Yeah, absolutely. So your experience has led you to do amazing things. And I often try and say to my children, if something bad happens, you've got to see there's a reason why it's happened. Or there's some goodness that might come out of it. You might not see that at the time. Yeah. But actually there has been a lot of goodness that's come out of your work.

It's phenomenal the work that you've done because you do not stop, which is so important. And we have that in common. Oh yeah, right. Okay. So you set up your hashtag make menopause matter campaign. Yeah. Which any woman and man, anybody, breathing can sign on to. Yes.

Anybody. Do that through your website. Yeah, that's menopalsupport.com. UK. And it's very easy, very quick to do it. It's on the first page. It's the first thing that you see that you're prompted to do. Please do that.

Because what, the reason that you're doing, there's three reasons, aren't there? Yeah, so there's three aims. Yeah. So the first one is to have mandatory education for GPs. Yes. The second one is to have guidance for every workplace. About the men are poor. Yes.

So that we stop losing women from their roles. within the workforce, but so that they also get support in the workplace. Yes, it's acknowledged. And actually, you haven't got a third name anymore. I haven't. Because. Because. Yay.

So Louise and I were, we were at a conference on Thursday. Fortunately, we were sitting next to each other. I got a notification from our friend and supporter, the MP Rachel McLean, who has been instrumental in health. helping us to achieve the third aim. And the third aim was, and it's so nice to say it in the past tense, the third aim was to introduce menopause into the secondary school curriculum, which on Thursday we saw a letter from the minister to say that that is going to happen.

So we were very happy, weren't we? Yes. So now you only have two aims. So now we have two aims. So let's just talk very quickly about this, because I think this is a very important. So key. It's had a few mixed reviews. One of my children said, oh, but boys don't need to know, surely, actually, Sophie. Every boy has a mother or an auntie or a granny or a sister who's going to grow up or they might have a girlfriend who's going to grow up. So that's not reason. And

it's part of the PhD season. So it's not like a biology lesson. It's just going to be just a module, isn't it? Totally. And we're hoping that we can be involved with some of the content. But it's not going to take long. No. Even if women or even if children are told it can affect their mood. It can affect how people function. It can make your mother irritable. Actually, that's quite good.

Yeah, you know, as I said yesterday, you know, what young people need to know going forward is what is it? Yes. When does it happen? What are the symptoms? How might it affect the woman that it's happening? to how might it affect me? Yes.

What are the options for management? And how can I support? You know, as I said yesterday, you and I could teach that in an hour. Definitely. And I think the other thing that we do need to think about is the potential health risks of the menopause. Absolutely. It's a natural process that all women go through if they live long enough. But women who go through the menopause without adequate treatment, without replacing their hormones, have an increased risk of heart disease.

osteoporitis, diabetes, arthritis and even dementia and early death. So it's real, it's here, we need to really think and be educated about the menopause. Yeah, and I think the other thing is a little bit more understanding means that you might be more supportive of your partner and mother, but also your colleagues going forward. And I just think a little bit more understanding leads to us all having a little bit bit more empathy and compassion and that's a good thing which is really good with all them going on to the hashtag make menopause matter on your website how's that going to make a difference how many signatures do you need oh okay so currently i think we have about 27 and a half thousand as i've said

to you before it's not going away we're never going to stop obviously the more signatures we have the better yes we've achieved one aim in nine months with 27,000 So for me, I'm kind of thinking, do you know what, 18 months we might achieve two, two and a half, three years, we might have them all. But obviously, the more people that sign and share, then the more weight we have behind it. So, you know, sort of I would like to see 100,000 absolute minimum. And the same reason why we can't get that. Oh, my goodness. What are there?

66 million people in the country. Half of us are women. So, and hopefully the men would support too. So yeah, the plan is it's an ongoing project. But none of this is going away. And it's trying to think about the bigger picture, isn't it? We are sitting here in my clinic, which is lovely. But actually there's women suffering that can't access the right care.

Women who are socially deprived, women from ethnic minorities, women who are in different countries. And it's really important, isn't it, that women get the right information. And I think one of the things that we struggle with when we talk to women is that women are given misinformation. Yes. They're given the wrong information that's out of date. Or it's just basically wrong. Yeah. We've got really good guidelines, haven't we, that are national, international guidelines that are accessible through certainly my website, that's available through you. So it's very important that wherever you are,

you find out the right information. Yeah. And I think certainly, obviously, I'm very pro-H-R-T for the right woman, but I'm more pro having the right information because actually to know that you haven't got depression or you haven't got dementia or you haven't got a brain tumour when your headaches are worse or it can be quite relief. Absolutely.

To know that you're not going mad. Yeah. Just to destigmatise the men of the men of the way. is really important because it's still a taboo. People are scared to admit that they're menopausal and we were saying this morning whether we should call it female hormone deficiency, which I think is easier almost than menopause. Well it's actually more descriptive of what's going on as well, isn't it? Totally. So we need to change our mindset really because we're living a lot longer than we're used to in the Victorian times, which is great. But we want to have a really

healthy life and you know it's not just about balance your hormones it's looking at your sleep your mental health your diet your exercise all those things are really key but if one of them isn't right as you know it can quickly change content yeah absolutely and you know as we've said many times the thing is if you're feeling awful the last thing you want to do is go and exercise or eat well or shop to eat well, you'll eat whatever's in the cupboard and you probably want to curl up on the sofa. So I think it is. It's about having, as we said before, factual evidence-based information upon which you can make an informed decision. Yeah, which is so key to help so many women. So just in the last couple of minutes, I would be really grateful if you could just summarise three sort of take-home messages for women to think and refresh.

maybe just a bit from your experience, personal experience, but your experience would be helping so many, probably millions of women across the world. So if you wouldn't mind, just summarize three points. So I think the first tip that I would give anybody is if you are in your early 40s, educate yourself. Yeah. Just find out, maybe have a look at the nice guidelines. Maybe come to menopal support. Maybe have a look at menopause doctor website. just have a general idea of what menopause is and what it might bring. I think that's really useful just to sort of have a bit of an understanding because knowledge is power. So that can allow you to know what's happening.

I think also menopause doesn't have to be, doesn't have to be negative. No. It should be it absolutely should. It should be a time when you're maybe taking some time to recover. reflect on what life's been like before, maybe redefine your goals for the future. You know, sort of, I think that's really important that it doesn't have to be like that. And I think the third thing I would say is, if you're somebody who's listening to this and you're thinking, actually, I think all the things they've spoken about, I think that might be me. I would say, there actually, there is support out there.

You know, sort of we both have, you know, sort of websites and things that you can come to, but they're not, they're not just out. There are lots of other things out there. But I run something called the Menopause Support Network, which is a Facebook group that I'll be really honest. I never wanted to start because I haven't really got the time. But it became clear that we needed somewhere where people could get factual information. So I started it in, I think it was about 18 months ago. It's now got over 8,000 women. That gives you a size of the problem.

So come and join and, you know, sort of talk to women who have gone through this. they've got the right support and then they've made the right decisions and they're feeling so much better but now they're informed women who are staying on to help others so I think you know they would be the things that I would say but I think the biggest tip is just you know arm yourself with knowledge know what's coming and then you can work out how you'd like to manage it perfect thank you ever so much you are welcome my pleasure so I look forward to the next time I see you when there might just be one aim on your head. We've got more campaigning to do yet.

Thank you very much. My pleasure. For more information about the menopause, please visit our website www. www.menopausedoctor.com.