The Silent Why: finding hope in grief and loss
Claire Sandys is on a mission to see if it's possible to find hope in 101 different types of loss and grief (often joined by husband Chris). New ad-free episodes every other Tuesday. With childless (not by choice) hosts, this podcast is packed with deep, honest experiences of grief and hope from inspiring guests. You also get: tips on how to navigate and prepare for loss, blogs, experts, exploring how loss is handled on TV, and plenty of Hermans. For more visit: www.thesilentwhy.com.
The Silent Why: finding hope in grief and loss
Loss 62/101: Loss through menopause: Diane Danzebrink
#127. Think menopause is just a physical change?
What if we told you it can also bring grief, loss of identity, and a hit to your mental health?
This is The Silent Why, a podcast on a mission to open up conversations around grief, exploring asking if hope can be found in 101 different types of permanent loss.
Loss #62 of 101: Loss through menopause
In this episode, we welcome Diane Danzebrink, advocate, educator, and author of Making Menopause Matter. Diane experienced surgical menopause following surgery related to a potential ovarian cancer diagnosis in 2012. What followed was a mental and emotional decline that she never expected, and a battle few talk about openly.
This topic is especially close to our hearts. In 2019, Claire (your host) was also thrust into surgical menopause following a total hysterectomy, so we’ve been waiting to find the right person to speak to about the unique grief and loss tied to menopause. And we definitely found her!
Diane brings both lived experience and professional dedication to this conversation. She works tirelessly to support women through the often-invisible losses of menopause while campaigning for improved education, awareness, and support.
In this heartfelt episode, Diane speaks openly about the loss of identity, confidence, stability, and mental health, and how she ultimately transformed her pain into purpose.
Whether you’re going through menopause, supporting someone who is, or simply want to better understand this transition, this episode offers compassion, clarity, and hope.
To find out more about Diane, her book and her work:
https://dianedanzebrink.com
https://menopausesupport.co.uk/
To find out about the online support group I mentioned, Together in Surgical Menopause, visit:
www.surgicalmenopause.co.uk
My blog on PMDD: https://www.thesilentwhy.com/post/lostinside
Our story with loss of fertility & childlessness: https://www.thesilentwhy.com/podcast/episode/492a29c1/loss-of-fertility-chris-and-claire-sandys-part-1
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Thank you for listening.
Hi, I'm Diane Danzebrink and I'm here to talk to you today about loss through menopause.
Claire:Hello friend and welcome to The Silent Why. We're a husband and wife on a podcasting mission to look at 101 different types of loss and to hear from those who have experienced them. I'm Claire
Chris:and I'm Chris and this is loss 62 of 101. The grief and losses associated with menopause. Something we've got a lot of personal experience with haven't we?
Claire:Yes, well not quite for you personally.
Chris:Well yes, thankfully not something I have to navigate. It really should be called womenopause.
Claire:And if you're a regular listener you probably already know our connection to this because I had a total hysterectomy at the age of 38 due to PMDD and endometriosis and that surgery threw me unknowingly into what's called surgical menopause and it's been a long journey since trying to find my new normal and balance things with HRT which as the name suggests replaces the hormones lost
Chris:well we feel like we've lost a lot because of it and we've been searching for the right guest to talk to about it and now we absolutely have
Claire:yeah we're thrilled to be speaking with Diane Danzebrink in this episode if you spent any time in the menopause community, her name might ring a bell. She's an advocate, educator and the author of the book Making Menopause Matter, a powerful voice for change and support. I met her when she was a guest speaker for a lovely online support group called Together in Surgical Menopause.
Chris:Diane also went through surgical menopause after facing a potential ovarian cancer diagnosis, but the surgery to try and fix one problem brought with it its own unexpected and deeply difficult aftermath.
Diane Danzebrink:I was plunged into surgical menopause in 2012. I thought that menopause was hot flushes and no more periods. I had no clue. And for about the first three months, I thought I was doing really well. And then the first thing that I noticed was that I had huge anxiety. My mood was really low. I was crying a lot. I was feeling very insecure. I seemed to have kind of lost my confidence overnight. I was having a really horrible time.
Claire:What Diane experienced and what so many others are living through is a grief that often goes unspoken.
Chris:In this episode we open up on some of those losses of identity, stability, confidence, relationships, health, mental capacity and at times hope itself.
Diane Danzebrink:My mum and my husband tried several times to persuade me to go and see a doctor but because of the mental state I was in, I was convinced that going to see a doctor would either put me on a lifetime of antidepressant medication or I would be admitted to a mental health unit. And I was pretty terrified of both. And then I remember standing, looking out at the garden and the world just feeling so dark. And I just thought, if this is my life, I can't do this anymore.
Claire:Diane shares the moment she hit rock bottom, but her story is also a powerful testament to survival, resilience and the hope that can emerge even after our darkest seasons. There
Diane Danzebrink:was a point in my life when I felt truly hopeless. Take it from somebody that's been there, that there absolutely always is hope. There is life after feeling hopeless.
Chris:There is such honesty in what Diane has to share and she also explains how her own experience has led her to help others with a deep sense of compassion.
Diane Danzebrink:I remember on one particular occasion turning very grumpily to my poor husband and saying how the hell can this be right? We're half of the population. If I ever feel like me again I'm going to make damn sure I do something about this.
Claire:And she absolutely has.
Chris:So let's get into it. Over to Diane to introduce herself and tell us what a normal week looks like for her.
Diane Danzebrink:HiI 'm Diane Danzebrink. I'm the founder of MenopauseSupport.co.uk, the national Make Menopause Matter campaign, and I'm the author of a book called Making Menopause Matter. And a normal week for me looks a lot like supporting a lot of people experiencing menopause. teaching a lot of people about menopause and trying to create as many free to access resources as we can for people all about menopause. So it's pretty much eat, sleep, drink, breathe, menopause.
Chris:Is there ever a time where you're just like, oh my word, I wish people would stop talking to me about menopause!
Diane Danzebrink:]laughs ] Well I'm very lucky in that I carve out time to do some other things so this morning before speaking to you I went to my yoga class on a Friday morning I take singing lessons and on Monday evenings I take an acting class so yeah it's not all menopause there's some fun stuff in there and some of the menopause stuff is fun too.
Chris:What you fail to tell us, it's a yoga class for menopausal women. It's an acting group for women in menopause. I can't remember what the third thing was
Diane Danzebrink:A singing class, and they absolutely aren't.
Chris:Great.
Claire:Brilliant. It is nice when we get a guest that has actually been through what we're talking about personally, but also has an air of expertise on it as well. So we are loving the fact that you have so much menopause in your life. To start us off, tell us a bit about, so people are listening who may be completely new to this, they haven't got to menopause, they haven't got a partner in menopause. Tell us what menopause actually is, and then maybe the difference between menopause and surgical menopause? Because I know we'll be talking about that a bit as well.
Diane Danzebrink:Yeah, so menopause is essentially something that every female will experience. It will be different for every individual and menopause is quite diverse. So menopause actually means, the word means, the total cessation of periods. For the vast majority, a menopause experience will be described as you'll probably hear it described as natural or spontaneous and what that means is that for each female they're born with a complement of eggs or oocytes in their ovaries it's not the same for everybody some are higher than others for the vast majority it's as they get probably to their late 30s early 40s That complement of eggs or oocytes gets to a critical stage and they've been used to having a regular monthly cycle where the hormones follow a particular pattern. As they get to perimenopause, this is where those hormone fluctuations change. So what's happening is for a period of years, usually, the progesterone will start to fall, but the oestrogen, rather than rising and falling gradually over a month, it will start to peak and dip and that can be quite erratic and it's that that prompts people to have menopause symptoms so approximately three out of four will experience menopause symptoms for many the perimenopause to menopause stage so menopause is a clinical diagnosis that means somebody has had a continuous 12 months without a period so for many they may begin perimenopause in their late 30s early 40s And they won't have that point in their lives where periods have stopped for at least 12 months. So the clinical diagnosis of menopause until probably their late 40s, early 50s. And then everything after that is post-menopause. So that's all the years that you're going to live after that 12 months without a period, essentially. And for many, that's going to be between 30 and 40 years of their lives. So a significant part of their lives. Then there is surgical menopause, medically induced menopause, early menopause and premature menopause. So early menopause happens between the ages of 40 and 45. Premature menopause under the age of 40. So the youngest woman that I have counseled through that process is 17. The youngest we're aware of is 12. 12 is phenomenally rare. 17 is very unusual, but there are significant numbers who experience premature menopause. Medically induced menopause is where somebody is having medical treatment that has an effect on their ovaries. So it may be treatment that damages their ovarian function, which brings on menopause symptoms, it might be treatment that suppresses their ovarian function to help with another medical diagnosis. So that could be something like, for somebody who has very severe endometriosis, one of the lines of treatment is to suppress ovarian function to try to help with the endometriosis. Another is a condition called PMDD, which stands for premenstrual dysphoric disorder. So that is, a really severe sensitivity to an individual's own changing hormone levels on a monthly basis and for a small but significant number of women that can have a really significant effect on their lives often it's psychological symptoms which means that they find it very difficult to manage their everyday lives meaning sometimes loss of careers, loss of relationships, etc. So one of the lines of treatment is to suppress their ovarian function so that they're not having those hormonal ups and downs to try to help with the premenstrual dysphoric disorder. And then, as you mentioned, there's surgical menopause. So surgical menopause is where you have both of the ovaries removed at the same time. Clinically, that's called a bilateral oophorectomy. For many people, they may have a hysterectomy. They may have their womb removed at the same time. Some people, that will include their cervix. But for others, they will have ovaries removed and retain their womb. But if you have both of your ovaries taken at the same time and you are pre-menopause, that puts you into an immediate menopause. And that's what happened to me.
Claire:When I was listening to you, I was thinking, there's so little of this that women are educated about, let alone anyone else. I'm thinking about school and being told about periods. I mean, whether I didn't take it in because I was too young, I wasn't interested. But I don't remember at any point anyone mentioning the other side of starting your period. It's not like you're going to have these for 20, 30, 40 years, and then you won't have them. And this is what happens. We never looked at the whole journey, I don't think. It was just, let's educate them about what's happening now. And I know I've got a lot of friends in their 30s who haven't had any symptoms, haven't really thought So I think...
Diane Danzebrink:We kind of have to look back in history to really be able to answer that question. For much of history, health in general has been practiced, has been written about, has pretty much been dictated by men until recent history, actually. If we think about health in general, we can look back and we see that the word hysterical was regularly used about women's health. So it wasn't taken seriously. And there were very few women involved in healthcare. It took a long time for women to be able to train as doctors, et cetera. There was quite a lot of resistance to women being allowed to train as doctors. So I think what we've seen in, certainly in recent years, is that I definitely feel that this generation of women has sort of stood up and said, actually, we really have had enough and that we really need to be looking at all aspects of women's health. But I think in terms of education, I mean, I completely agree with you, Claire. I can remember being at school and, you know, it was a little bit about periods and basically how not to get pregnant. There was never any mention of menopause. So we weren't looking at the entire female life cycle. And we also have to think about the way that society has joked about menopause. I mean, I can remember as a child, probably in my kind of early teens hearing jokes hearing comedians joke about menopause regularly male comedians generally joking about menopause on television it's something that women have done behind closed doors i mean i know nothing about either of my grandmothers menopause experiences, because they were certainly done behind closed doors. So I think it's only more recently, with all of the awareness raising, not just around menopause, but all kinds of aspects of women's health, that we've started to talk about it and started to recognise how ridiculous it is that we're not teaching the entire population. It hasn't been included in the PSHE curriculum. I'm delighted to say that it is now on the PSHE curriculum. But why do we not have a public health campaign focused on menopause if it's going to affect half of the population directly but indirectly affect the other half? So I think it's probably only in the last decade that there has been sort of a real push to see some of these things change.
Chris:Absolutely, I felt that certainly. We'll bring it back around to personal experience, because when you were talking about and explaining different reasons for menopause, different types of menopause, it was making me think more and more, goodness, I haven't appreciated how unique Claire is, having gone through sort of ticking the boxes almost of endometriosis, PMDD, as you talked about then to hysterectomy and having tried several treatments. Even since hysterectomy, then all the different HRT types trying to get settled and struggling for four years now, five years since hysterectomy. So that was just made me think, goodness, I don't fully appreciate just how sort of unusual or unique a story that she's got. But for you, Diane, just on the sort of pleasant versus unpleasant scale, what was your experience of menopause like?
Diane Danzebrink:Horrendous. Absolutely horrendous. So my surgical menopause... happened back in 2012. I was plunged into surgical menopause in 2012. And essentially, I had been feeling pretty rubbish for a good few months before I went to see my doctor. I was feeling really lethargic, really struggling to sort of have the energy that I would usually have, very tired, Sometimes sort of feeling a bit flat, but just really not feeling myself, but not really being able to put my finger on anything. And I don't really like going to see the doctor. I've not had great experiences on some occasions in the past, and we'll come to that. But it was my husband who finally persuaded me to go and see the GP. And she was very nice. And I explained to her how I was feeling. And she said, okay, let's do a blood test. So she did a blood test. And I went back to see her probably about a week later. And she said, oh, I've looked at your blood. She said, and, you know, your iron levels are, your ferritin is very low. She said, you know, kind of, do you struggle with your periods? And I said, oh, I've had horrendous periods for more than 20 years. And she said, well, why did you not come and see me? And I lived in the area for a few years, but I'd lived in several other places. And I said, well, you know, it's just something that I've got used to. And I had... When I'd lived in other areas, I had tried to address not so much the heaviness of the periods, but the horrific pain that I used to be in on a monthly basis to the point where it had become quite usual at certain periods during the month for me to kind of end up curled up in a ball on the floor with the pain that I was in. There's two particular occasions that stand out to me. On one particular occasion, I was in so much pain and really couldn't move and was curled up on the sofa. And my husband called a doctor to come to the house. And she came and she stood over me as I was curled up on the sofa. And she looked at me and she said, you're not in enough pain for it to be appendicitis. So if it gets worse during the night, call an ambulance. And she left. Wow. And that was that experience. And then a few years later, I went to see another GP and explained about the terrible pain that I was in, the terrible abdominal pain that would sometimes shoot down my legs and in my lower back and the very heavy bleeding. And he decided that I should have my kidneys scanned. So I've got to be honest, kind of the several interactions that I had just made me feel, oh, I just have to get on with it. So I explained to her and she said, you know, you should have come and seen me. But the trouble is you sort of think, well, I've had several really poor experiences. Why would I go just to be basically brushed off again? So she said, well, you know, your ferritin is very low. So I'd like to start you on some iron tablets and let's see what that looks like and let me know in a few weeks how you're feeling if you feel better that's great but if you feel worse come back and see me again well within a few weeks i felt absolutely no better and significantly worse. So I went back to see her again and she said, OK, we're going to run some more. She described them as exotic blood tests. And so she did these bloods. And you always know, don't you, when a doctor's found something because they ring you, you know, kind of they ring you a couple of days after the tests. And she rang me and I was at home. She said, well, I have found something. She said, so I am going to refer you. She said, I found that your CA-125 is very high. So CA-125 is a protein marker in the blood, which can indicate ovarian cancer, but I want to be really clear because I don't want to scare anybody. It can also indicate lots of other things. So she said, I am gonna send you for some tests. So long story short, I was sent for tests and scans, et cetera. And the upshot of all of that was that I was sat in front of a gynecologist who said, we think you've got ovarian cancer and we want to do a total hysterectomy. I'll be honest with you, when somebody says they think you've got ovarian cancer, and I'm sure that anybody who has ever had any kind of cancer diagnosis I'm sure that anybody would probably feel similarly in that I just thought, okay, we'll just get them out. You know, just do the surgery as quickly as possible. When we had the conversation prior to the surgery, the focus was completely and totally on whether or not I realized that I would no longer be able to become pregnant. and i was quite irritated at that because i had explained that i had never had children that was my choice it felt like a real tick box exercise to me like we have to make sure she knows and that was it that was all of the information that i got prior to my surgery so i had my surgery And I was probably out of the hospital within about 36 hours. I've got to be honest, I was pleased I wanted to be at home. She did come and see me following the surgery the next day. And she said, I'm pretty sure that I've taken your ovaries just in time. She said, you did have complex cysts on both of your ovaries, but I'm pretty sure that I've taken them just in time. I'm pretty sure they weren't yet malignant, but that is the way that they were going. She said, but did you know that you also had grade four endometriosis, adenomyosis and a large fibroid? And I said, no. Well, nobody had ever told me those things, but that makes a lot of sense in terms of the amount of pain that I've lived with for the last 20 plus years.
Chris:And I have got a lovely scan of my kidneys.
Diane Danzebrink:So it answered a huge amount of questions for me. And then I went home. And I never saw that gynecologist or a member of their team again because I was never invited back for a follow-up appointment.
Claire:Wow. And that was you in Surgical Menopause, which I'm guessing at this point, you didn't have a clue there was more to come.
Chris:Well, yeah, that's not even the end of it, is it? That's just the end of one chapter and the beginning of another challenging chapter.
Diane Danzebrink:To be honest with you, Claire, I thought that menopause was hot flushes and no more periods at that time. I had no clue. And I thought, oh, do you know what? If I have some hot flushes, well, you know, that's not the end of the world. The surgery's been done. That's the important thing. A lot has been discovered, which makes a lot of sense. So, you know, the one, I have to say the one kind of fortunate thing that I felt about the timing of my surgery was I came home just before the London Olympics. So I was told to sit on the sofa for a few weeks. So I got to sit on the sofa for the entire of the London Olympics and watch everything.
Claire:Perfect.
Diane Danzebrink:So that was lovely. And I did start to have a few hot flushes quite soon, but literally it was a handful. It wasn't hugely intrusive. And for about the first three months, I thought I was doing really well. And then I started to feel that things were going wrong, I suppose. the first thing that i noticed was that i had huge anxiety and it turned into really crippling anxiety my mood was really low i was crying a lot i was feeling very insecure i seem to have kind of lost my confidence overnight um i was having horrible heart palpitations i was I was having a really horrible time with, I say sleeping, but most of it was not sleeping. So I would go to bed, I would go to sleep, I would wake up at stupid o'clock in the morning with my heart racing. Sometimes I would be having a panic attack. I'd be shaking my husband to wake him up, poor man, who'd been out at work all day and trying to pick up all of the pieces of all of the things that I didn't feel able to do at this time. And it sort of carried on just getting worse, essentially, to the point where I... wouldn't leave the house so one of my favorite things to do is to walk my dogs in the morning and I wouldn't even leave the house to walk my dogs I wouldn't essentially the only people that I would see were my husband and my mum I wouldn't answer the telephone so this is about this is probably about seven or eight months after my surgery I wouldn't answer the telephone I had got to the point where, every time I say this, it sounds completely ridiculous, but my irrational brain had decided that everything was going to be bad news and everything was very negative. So I'd got to the point where I wouldn't even open post because I was convinced that it was going to have negative stuff in it. And my mum and my husband tried several times to persuade me to go and see a doctor. But because of the mental state I was in by this time, I was convinced that going to see a doctor would do one of two things. It would either put me on a lifetime of antidepressant medication or I would be admitted to a mental health unit. And I was pretty terrified of both. So I just kept refusing. And then on one particular morning, I woke up and it had been another horrific night. And the bedroom that we had had these lovely big glass window doors. And I remember standing, looking out at the garden. And the world just feeling so dark. It really felt as though the world was encroaching in on me. And I just thought, if this is my life, I can't do this anymore. And later that day, I came very close to taking my life. But a little dog called Henry saved it.
Chris:What did Henry do or how did Henry help you in that moment?
Diane Danzebrink:So I was in a vehicle and I was about to do something very silly with that vehicle. So I hadn't driven for a long time and I still don't know what sort of made me do this. I can't tell you. I've thought about it a lot, but I don't know. I had four Jack Russells. I had put the four dogs in the back of the car, got into the car, started driving, not very far from my house. And I was about to make a maneuver that would certainly have ended my life. And as I went to make that maneuver, Henry barked. And his bark kind of broke through whatever my thought process was. And I don't know what my thought process was, but his bark broke through it. And then I sort of went into panic mode. at what I had almost done. I was then crying, shaky, at the wheel of a car, not a good place to be. I had to try to navigate my way home. And thankfully I did. And later that day, I told my husband what I'd almost done. And he immediately, unbeknown to me, he immediately contacted our GP practice and said that he needed help and he needed it today. And thankfully, one of the GPs at the practice saw me at the end of practice. And I went in with my husband because I wouldn't go in on my own. And she asked me how she could help. And I sat there sobbing, snot bubbles, heaving, the whole thing. And she said, well, I can help you because I know exactly what's happened. And that was such a huge relief to hear somebody say that they could help. And then she started to talk about HRT, hormone replacement therapy and I immediately kind of reeled back in my chair and said oh but you know that's really scary I've heard the scary stuff about that etc etc and she said that's okay she said let me talk to you about sort of the latest up-to-date evidence-based information about that and she took time to explain it to me I wouldn't say that she insisted that I start but she strongly advised that I I start and I slapped an HRT patch on my thigh that day and it wasn't a miracle and it didn't work overnight but slowly but surely over the next few months things started to feel a little better and there suddenly seemed to be a bit of a chink of light in those dark imposing clouds that i felt sat over me all of the time and i thought okay maybe there is some hope for the future and as the months went on my hrt was changed a few times i sought a therapist that i could go and speak to and i had lots of support from friends and family And I think those things together are what helped me to get through that time.
Claire:Yeah, I totally identify with so much of what you said. And I think the difficult thing is, especially when it affects you mentally, I found it very difficult to describe what I'm going through partly because your mind's not in a place to be able to understand it anyway let alone try and reach out so reaching out for help is very difficult even if you're someone who wants to go to the doctor and spends a lot of time at the doctor trying to get help it's still very hard to verbalize what you're feeling and especially if you're somebody that's quite a can-do person you're quite a strong person it feels like you're describing a weakness in you like you've failed in some way or you can't control it yourself you can't just buck up so I think all that is very difficult I remember the first time I saw someone it was I'd gone private to get help and same sort of thing he was like yeah I know this I understand it I can help you and I remember just just crying because those words mean so much when you're in such a dark place for someone to just shine that light in and say don't worry there's options here it's like oh my word it's like yeah it's a it's a very emotional thing to hear so I totally totally understand that
Diane Danzebrink:yeah absolutely and I think something that you just said has you know kind of really resonates with me in terms of I'm used to being the kind of the strong, sensible, level-headed friend who everybody comes to with their problems and we work them out. And I'd gone from being everything that I used to be to this husk of a human being. And it just felt so desolate and so hopeless. And as I say, it really was a combination of things for me that sort of helped me get through that time.
Chris:In terms of an overview, on reflection, how many years of your life do you think have been just negatively impacted by the health struggles? I know you said 20 years of struggling with your periods, the monthly cycle, and then all this around the actual sort of surgery, diagnoses, HRT times. So how many years do you think you've really just think my life has been impacted, not in a great way, by this?
Diane Danzebrink:So I think since surgical menopause... I think it probably took me about between two and three years to really feel as though I was, when I say back to myself, I'm not the person that I was. It's a changed person, but that's not necessarily a negative thing. But I think there were certainly two or three years because Even, and I don't know, Claire, if you sort of resonate with this as we're sort of in similar situations in terms of our surgical menopause. But even for me, having my HRT, having some therapy, having that family support, particularly in terms of my HRT, That had to be changed several times. So during that two to three year period, that was a period of trying to get it right in terms of the HRT. So there can be some real ups and downs during that time. And then I think I was pretty settled for a long time until COVID came along. And I've only ever had two COVID vaccinations. The first one, I didn't seem to have any effect at all. The second one, and there's still no research on this. I've spoken to several knowledgeable menopause specialists about it. But the second one, about two weeks after my second COVID vaccination, I started to get heart palpitations. My sleep was broken again. My anxiety started to ramp up. And the one symptom that I've never been able to sort of manage completely is my tinnitus. So ever since I had my surgery, I've had tinnitus in my right ear and that really ramped up. And I went to see the gp where i was living at the time and thankfully for me she is a recognized british menopause society menopause specialist i know how fortunate that i was to have her as my gp just for a couple of years while i was living in this particular place and I said to her, you know, it's so weird. I was fine. I have my COVID jab. And then, and I said, you know, I, I speak to a lot of people. I run a big support group and I'm starting to see people saying that they don't feel their HRTs working as well as it was. We're hearing about young women having really erratic periods after their jabs, et cetera. And she said, you know, there does seem to be something going on for some people, but I can't tell you exactly what's happening let's change your HRT again and she did and that had to be changed a couple of times but I probably lost at least another year and there was a point during that year that my anxiety was so bad that I actually thought about giving up the work that I do now because I just thought I just can't cope with this so you know kind of probably out of Where are we now? 12 years. I would say probably four of those years were to some extent lost to the effects of surgical menopause.
Claire:And of course, with each HRT change, they tell you to give it three months sometimes. So just tweaking something can add months and months to your recovery.
Chris:It's so hard, isn't it? Because we're talking big timescales here, but I've appreciated having watched Claire that every single day there's something in it that just is a challenge. It's not like, you know, try it for two or three months. It's like... Oh, man, every day is difficult. Every day there's something to try and manage, something to be aware of, something to navigate. It's exhausting. So I completely understand, you know, yes, it's one thing to talk about 20, 25 years. But to know in that time the number of days that you've had with just quite sort of traumatic experiences. And I think we've recognised just from what you said how many temporary losses of things that you've experienced through that time. You did say, you know, I'm not the person I was. You know, we focus a lot with this podcast on permanent losses. So what do you think you've had to really recognise, grieve, acknowledge the loss of that, you know, I know physically, of course, you would. through your hysterectomy the ability to physically to have children what are some of the things that have been I guess the biggest things to grieve and say this this has gone permanently and I need to recognize that and grieve it
Diane Danzebrink:Interestingly for me Chris because I had made the choice actually very early in my life not to have children and There is part of me now, I will never know the answer to this question, but there is part of me now that wonders, was there some kind of inner knowing in me that with what turned out to be my gynecological history, actually that might not have been the easiest thing to do? with what I had going on. So I will never know the answer to that question, but I do have a lot of faith in that inner voice. In terms of loss, one of the things that I've written about my anger and having to get through that, if we look back probably to my early to mid twenties when all of this really kicked off for me with my kind of my gynecological history, what turned out to be endometriosis, adenomyosis, et cetera, that had such a massive impact on my life and the incredibly heavy bleeding and the flooding, et cetera. I really, I was really angry at the loss of time and the loss of opportunity so there were lots of occasions where my husband and I would literally we would have to plan our holidays around my periods so we couldn't just go ahead and plan something it would be okay so when are you going to be having a period so we don't want to be on holiday then because you're likely to be having a very heavy period and you're likely to be in a lot of pain so we don't want to do that there were lots of occasions that I missed out on attending so there would be things that we would be invited to that either neither of us would go at the last minute or he would go on his own because i couldn't go because either my bleeding was so heavy or my pain was so severe that i couldn't go and enjoy them and one of the things and I've done quite a lot of work on this but it does still really upset me is I love horses and we used to have horses and the amount of time that i missed riding my horses because of the fact that either i would be thinking oh you know i'm gonna bleed i'm gonna bleed through whatever i'm wearing into the saddle i don't know where i'm gonna be or i'd just be in too much physical pain to actually sit on the saddle and ride that that does That does still really rankle with me. So for me, a lot of it is around time and kind of lost experiences, things that, you know, joyful events that I've missed out on. And just that idea of having to plan my life around pain and periods. Yeah, that's they're the things that as I say I've done a lot of work on that but you know kind of in terms of the riding I've come to terms with most of it but in terms of the riding I do kind of feel as though that was a loss and could I I've ridden since I don't have my own horses now I've ridden since could I go and ride again yeah I absolutely could but I can't go back to that time when I had those horses that I absolutely adored and I missed out on that time with them
Claire:I think you change as a person for a while. And I've found there's this sort of need in me to try and almost want to explain to people I meet now or that know me in this later period, like this isn't fully me. I don't know for sure if I will ever come back fully, but I like to believe I will. But at points when I've been quieter or less social or I don't engage in conversations as much or I step back from WhatsApp discussions or anything like that, I feel like there's this sort of I'm a different person and I don't like who I am and I hope I'll become someone else again one day but I feel this sort of need that I kind of want to explain it but I also don't know how so I think just wrangling with your even your own identity can be tricky and like who is this is this me forever because if you know this is I've often said this to Chris if I knew this was me forever if someone said to me right this is you you're not going to be able to do this this this this and this then I feel like I would adapt and get on with life I've often said to you I wish I could just lose a limb something physical I would adapt and get on with life but when it's constantly part of you as a as a mental sort of person and and that side of it I find that very difficult because I don't know if I'm this person forever or next month it will be completely different when you tweak something and find that very hard one thing we do ask all our guests is is if they've struggled with the question why at all some people ask it some people don't is that something you've ever kind of got stuck in or asked yourself why me why is this happening to me
Diane Danzebrink:no essentially for me I think I've probably used that in a different way I see this as part of my life experience and that is what has prompted me to do everything that I've done since my experience of surgical menopause and I look at it quite positively now in terms of if that hadn't happened to me I wouldn't have done what I've done I wouldn't have had the opportunity to affect positively affect the lives of so many other people and so I can't say I'm grateful for it, I'm not there, but I accept that it was part of my life's experience and I've used that positively.
Chris:then whether it's coming to terms with or grieving something for both of you, when the experiences you have had have been ongoing, quite often it can be a case that you think that or you assume that grieving is just when something has ended and then it's about coming to terms with it and accepting that but when you keep having to do that's a bit well the thing that comes to mind is your house is burning down and it's burnt down the fire's out and you then grieve the loss of your house your belongings your possessions to use that picture it's like trying to grieve it while it's still on fire and then the fire dampens down a bit and then comes back to life again it's like well i've got to keep trying to recognise the losses, the things I'm coming to terms with while this fire continues and it's still burning. So what's your experience been like in that sense of coming to terms with something that just hasn't ended, it's continued in different ways?
Diane Danzebrink:Yeah, so I think going back to sort of the, going back to the COVID experience, I think the thing for me, the kind of the overwhelming emotion for me then was fear. I was so terrified. that I would go back to where I was in the months post-surgery because there were hints of that in the way that those specific symptoms that I spoke about were coming back. I had this real fear of the fact that I was going back to where I'd been. And I can remember saying many times to my husband, I can't go back there. There is no way that I will not get through doing that again. So I was absolutely terrified of that. So I think in terms of, I know that I'm in surgical menopause, I will always be in surgical menopause and the surgical menopause will always have to be managed. Claire, again, I don't know if you'll resonate with this lovely, but there, I mean, I know that for me, to be me as i am now this is you know just purely my experience i need to have hormone replacement therapy as part of my life and for people who you know kind of experience have to do a lot more in terms of treatment and medication they might sort of think oh for goodness sake you're just talking about putting you know patches on every week but there are some weeks when i have to change those patches and i'm like oh i really wished i didn't have to do this and i know it sounds really minor but because i've been doing it for 11 years now the fact that i have to remember to do it twice a week and that i get these sticky marks on my legs all the time and i have to scrub my legs to get those sticky marks off and i have to work out where i'm putting my patch this week or this particular day there are just some days where i just think oh and it's it's not all the time it's just occasionally but you do yeah i mean for me it's just it is only occasional but there is just sometimes where i think i wished i didn't have to do this but i do because i have to do that to be who i am because i know that and believe me i've tried on occasions to reduce doses etc etc and it doesn't work for me i i have to be where i am and i know that i will i will always need to continue to do that and most of the time it's fine but there are some days where it's just like oh for goodness sake really Do I have to do this? Yes, I do, is the answer.
Claire:There's that fear in me that at the other end of my life, someone's going to say to me, we need to start adjusting your HRT and bringing it down. And part of me is going to be like, no, unless it's negatively affecting me, I'm not touching this. I'm not going through it again. I don't want to readjust. I don't want to come off it. It's not even done, is it? There's a later period in your life when you do have to think about, do I need to reduce and do I need to do stuff? Yeah, it feels pretty endless.
Chris:The number of times I've left you drying in the bedroom every morning. Because you've literally got a bucket of gel. I've suggested, we need like a non-absorbent onesie that you just fill overnight with gel. Looking like a starfish. And then while you sleep, you absorb it. Because it's been ridiculous at times, the things you've had to do with it. Well,
Claire:there's so many types as well. People move from sprays to patches to gels to oral tablets. And when you said you're trying each of those for three months and then they might want to adjust the dose. So that's another three months. And then they say, well, let's try this instead. So it is years of trying to get that right if you're really not getting it right. What's What are the things that kind of, in those darkest periods, were there anything that brought you hope? Was there anything you were clinging to that helped you through to the other end?
Diane Danzebrink:Gosh, was there anything that brought me hope? Honestly, in the darkest times, no. And I've kind of, I've often heard... people who have had suicidal thoughts or come close to taking their own lives and then speak about it I've often thought and this is often something that you hear on the radio in a radio interview and I've often thought to myself you know how my heart goes out to them but how I did I really didn't understand what it was like to get to that point in a life where you felt that that was the only option. With my own experience, it did give me that insight. And it's not an insight that I was seeking, but it has really given me that insight. It does make me very keen to talk about that because I think as a society, we still very much shy away from talking about suicide. And I think it's really important that we do, I mean, I've been criticised in the past for talking about the fact that there are, you know, sort of the highest rate of suicide amongst females in the UK is generally between the ages of 45 and 54 that does tend to that does tend to change slightly on a year-to-year basis but it's around that time and so for me that makes me question could there be a connection to menopause and you know sort of as i've been in the really un i say unfortunate I feel very blessed to have been able to do this and very honored to being able to do this for people where I've been in a position where I've spoken to several men over the last decade who very tragically have lost their partners to suicide, which they felt was absolutely related to their partner's menopause experience. And as I say, I've been criticised for talking about it, but I will not stop talking about it because if it helps to save one life, then it's worth the criticism. I, you know, I do think it's something that generally, not just in relation to menopause, but generally, we need to get much more comfortable with talking about, because I think that will help people to be able to open up and talk about what they're experiencing. And that's the way to get help and support. Yeah. And so I really hope that sort of in the in the coming years, we can get a lot better at that.
Claire:I'm just thinking about the irony of us looking for hope in 101 different types of loss. And the one that maybe you can't find it in is the one that I went through. But I know exactly what you mean because I have been there. And I think the problem with this one is with menopause, it affects your mental cognition. Is that a word? In such a way that you're not yourself. So even if you are someone who would normally look for hope or cling to something or that's just taken away because you can't see the world or yourself or anyone else for what it really is. is and it breaks my heart when I'm in Facebook groups either for PMDD stuff or for surgical menopause where it's people and it's relationships that are breaking down and it's someone saying I can't stand my husband everything he does annoys me and I know that feeling I've really been there but underneath there's loads of people saying yeah I left my husband it was the best thing I did and and it just oh it just really makes me sad because there's so many coping mechanisms you can put in place and I've had to just learn them I need to know on certain days that not to speak much because everything that's going on in my head is dark or negative or I'll be picking at people or you know Chris will get everything wrong and I know those days just to quiet him down and he's learnt or I'll verbalise it to him and he's learnt you know to just let me be like that that day and we've had to learn these things to get through but a lot of women aren't told how to deal with these and the fact that it is something you can get through or that you can get help for it and yeah it really saddens me that that's the case but I do understand that feeling of just no hope because you don't know how to get out of it and you're such a different person and it is so dark and I remember a situation where I had one of those dips for no apparent reason we were putting up some a plant on the front of our house we bought this lovely climber and we were halfway through putting it up and I just crashed I don't know what it was a very dark place and I had to go and lie down I was crying and all over the place and I took some paracetamol because my head was pounding and Chris left the rest of the paracetamol on the night table next to me and I just I remember looking at them and saying to him you need to take those away and I didn't even I wasn't even thinking of anything but my brain was in such a bad place I didn't trust myself or anything about me to kind of have control in that moment because it is so dark you just can see no way out so I totally understand that I think that's why it's such an important thing to talk about because it affects you cognitively in such a dangerous way sometimes
Chris:that's in the moments in the darkest of the times the days the moments the seasons what about since then so when you start to get more of a feeling of okay this is me coming back and So Diane, you're involved now, as you said at the very start, in many people's lives and have been and continue to help champion the cause, raise awareness, support other people. So what has that hope experience been like in terms of finding a new purpose or new missions to cling to and to give you your fight back? What's that been like?
Diane Danzebrink:Yeah, I mean, nothing short of life-changing, ultimately. So I said I'm a different person. A lot of this is very positive because before my surgery, I'd never been involved in campaigning. I would never have thought of being involved in, you know, kind of anything to do with campaigning. But I think it really kind of struck me as I started to feel better. I started to research and obviously this is a long time ago. So I wasn't heading to TikTok and Instagram. I was digging into chat rooms online and I just kept seeing the same things come up time and time again. I feel like I'm going mad. I don't know who I am anymore. I feel so lost. I feel so alone. This is affecting my relationship. This is affecting me at work. And I just remember on one particular occasion and I sort of define this as the turning point my life at that time. I remember on one particular occasion turning very grumpily to my poor husband and saying, how the hell can this be right? We're half of the population. If I ever feel like me again, I'm going to make damn sure I do something about this. And ultimately, that was it. It was that driver that so many people were needlessly suffering, not just the people going through it directly, but those around them, their partners, their families, etc. And that sort of became my driver so my background is in therapy i went on and did some nurse training in menopause combined the two started to counsel women individually while kind of thinking what else could i could i do here and then in 2015 set up menopause support which was really about providing information and as time went on I started to be asked to deliver training to businesses and organizations. We started to do some one-to-one sort of support for individuals. I had loads of things on my wishlist that I wanted to do in terms of providing free resources. In 2017, I set up a Facebook community that now has 35,000 members. in 2018 i launched a national campaign the make menopause matter campaign in eWstminster and we now have over 200 000 supporters we've achieved our aims of having menopause added to the pshe curriculum having that included in the medical school curriculum since september last year there's still a lot to do but i think in terms of me personally i Certainly before my surgery, I would describe myself as a people pleaser. I was somebody who never really wanted to upset anybody. So I would probably do things that I didn't necessarily wanted to do. I would maybe accept invitations that I wasn't that thrilled about. And now I just find it so easy to say no, thank you, which is just a joy. It just makes life so much simpler. And it means that I'm much more respectful of my own time. I value my own time so much more than I used to. My boundaries are very fixed in terms of what I will and I won't do, where I will and I won't go. who I will and I won't spend my time with. I talk a lot to other people about self-care and that's me caring for me so that I can put the best that I can into trying to help other people but that's been a learning process that wasn't like I had my surgery and overnight I changed into this different person so I still hope that I am a very caring empathetic kindness is hugely important to me in my life it is one of my very core values but I'm a lot kinder to myself than I ever used to be. And so in many ways, It was, as I said, it was a dreadful experience to go through, but actually for me, there are lots of positives to take out of it, not just in how I've been able to help support and campaign on behalf of others, but also how I have reassessed my relationship with myself.
Chris:Wow. And so with all that in mind, how do you view the future now for yourself, for the wider community that you're involved in, people learning and education, how do you view the future?
Diane Danzebrink:So if we kind of take that in two parts in terms of the sort of the menopause and wider women's health space, I think we're moving in the right direction, but the pace of of change is far too glacial for me. I would like to see things move more swiftly. I would like to see more stakeholder interaction with those of us who are working at grassroots community level. I think that's really important. I don't think there's nearly enough feedback taken by national stakeholders. So I mean people like governments, the NHS, et cetera, from not just me, but people who do work similar to I do in the entire spectrum of women's health. I think those meetings are often kind of a handful of people rather than spreading it out more widely and hearing about what's really going on on the ground because that's really what they need to hear. Taking on some of the practical common sense initiatives that some of those grassroots organisations can bring to the table so I think there is certainly hope for the future and I definitely think that things are better than they were a decade ago this is definitely a decade of not just women because there are men too who are speaking up in this area but I think we're certainly in a better place than we were a decade ago and for me personally I think my own life is certainly in the last So it's taken me probably nine years maybe since my surgery to find more balance in my own life. So once I was sort of completely immersed in the world of support and advocacy and campaigning, that pretty much took over my life for a good few years. And now I have a much better balance. So I still... I'm very involved in that work. It is still my nine to... Well, it's not even... It's not nine to five. But anyway, it's still my Monday to Friday. But my weekends are... They're mine now. Whereas for nine years, they belonged to the cause. My evenings belong to the cause. Now my weekends and my evenings belong to me and I'm starting to find fun things to do in them. And who knows, I might even ride again in the spring.
Claire:Yes. I can't help but think how many women, you know, have been helped by you and owe it all to Henry. Indeed. There were a lot to be thankful for.
Diane Danzebrink:Yes, a very kind friend. for a birthday a couple of years ago. I don't know if you've seen them, but you can get these sort of pictorial pillows. They'll sort of print a photograph on the fabric of the pillow. It was a two-sided pillow. So one side has got one of our current Jack Russells, Poppy, with the Make Menopause Matter sort of logo in front of her. And the other side is a lovely picture of Henry. So yes, Henry looks at me every day in the bedroom.
Claire:Bless him. Before we ask our last question for you, just give us an idea of the range of symptoms that come with menopause. Because something I was not prepared for was, you know, I went to a chiropractor for many sessions to try and sort out my neck and shoulders. And when I upped my oestrogen, it vanished overnight. I never went back in. You know, I've done dietary changes. I've done FODMAP diet. I've done so many things thinking I had other issues that actually, once my HRT was sorted, went away again. So give us a broad range because, you know, I've had some, you've had some, and there'll be loads more. that we haven't had
Diane Danzebrink:yeah yeah so before we do the symptoms i think the thing that's really important for everybody to know is that Females have estrogen receptors from the top of their heads to the tip of their toes and everywhere in the body. So if you think that whatever type of menopause you experience, if your estrogen level is going to deplete to significantly lower levels than it was earlier in your life, those estrogen receptors are maybe not going to be getting what they've had previously. So consequently, I think that helps people to understand why the symptoms can be so varied. So symptoms really fall into three categories, physical, cognitive, and psychological. Physical, we've all heard, as we said, of the hot flushes and the period stopping eventually. But equally, it can be things like heart palpitations. As you mentioned, Claire, achy joints and muscles. It can be things like dry eyes, dry mouth, burning tongue, changes to your gums, dry or thinning hair, itchy skin, gut and bowel issues because you have oestrogen receptors. in the gut and the bowel too. It can be what doctors call the genitourinary symptoms. So things like increased urinary frequency and urgency, urinary tract infections, vulval and vaginal symptoms. And I think with those symptoms, for many people, they find them very difficult to talk about, sometimes to their own partners, and very often to a medical health professional. So what we tend to find is there are a lot of women, particularly maybe in their 60s and 70s, who are still experiencing those genitourinary symptoms, and they have no idea that they're related to their menopause, which could have been 10, 20, maybe 30 years earlier. or that there are very simple, low dose, local estrogen products that they can get from their doctor, which will help them with those. So there are more physical symptoms, but that's a brief overview. Then with the cognitive symptoms, you often hear them termed brain fog, but what we're really talking about are changes to memory and concentration, which can be challenging in any aspect of your life. But for many people, the biggest challenges are around the workplace. And then you have the psychological symptoms. So psychological symptoms, the one that I would say we hear about the most often and probably comes along quite early in perimenopause and might not be recognized as related is anxiety. So it's not uncommon even today hear from women who have gone to their doctor and said, I feel anxious. I feel low. My moods are up and down. I feel like I've lost my confidence. to be told well clearly you're stressed and you need antidepressants and i'm not for a moment suggesting that antidepressants don't have a place for some people in their lives but if that anxiety low mood mood fluctuation loss of confidence is related to hormones so if that person is late 30s early 40s they've never experienced those things before then menopause should be there in the equation, that it should at least be thought about, because they're going to be related to the hormone fluctuations. In terms of loss of confidence, a lot of people speak about you know kind of loss of confidence in their workplace loss of confidence with their own personal relationships loss of confidence with driving is really common you know you might have been a really confident driver previously and suddenly you just don't feel confident anymore and i think for a lot of people they might be aware that hormones are, you know, the oestrogen, the progesterone, some of your testosterone is produced from the ovaries. But I think for a lot of people, they're not aware of the brain-ovary connection and how all of this ultimately starts in the brain. So, you know, there's a lot of work to do, I think, around awareness in specific areas of menopause too.
Chris:Just when you talk about even the physical symptoms, I was thinking, and we're not even touching it, there's a whole different episode in how that applies across cultures and ethnicities, where things are not so open, subjects are more private, taboo, male, female, difference, goodness me, it's such a huge topic.
Diane Danzebrink:The diversity is huge, Chris.
Chris:I would love to do a bonus episode, because I've wanted all episodes just to throw in a few questions, but it would take another 20 minutes, about just your support from the your husband, what that experience has been like, but I'm thinking actually there could be a spinoff episode for men. So people like yourselves could share a bonus, you know, listen to this, make your partner listen to this, et cetera. That would be wonderful. The final question then it's time. And we're so grateful for the time you've given up. Thank you. We've covered so much ground. So to finish off this wonderful chat, then we like to ask every guest the same question, which is something ultimately is tapping into something you've grown, you've nurtured, you've cared for that can be then passed on and shared. So something specific from your experience then that leads to our final question. Diane, what's your Herman?
Diane Danzebrink:Can I have more than one?
Chris:Go on then.
Claire:Yeah, you can.
Diane Danzebrink:So I have three Hermans and I kind of think I need three little blue Hermans. I have three Hermans. One is there was a point in my life when I felt truly hopeless. And I would just like anybody that listens to this to know that if they get to that point in their lives, to take it from somebody that's been there, that there absolutely always is hope. And that is something that I hold really dear to me in my own life. So that's definitely something that I have learned and I hope will help other people. The second thing is what I have been able to create out of that experience and pass on. So the knowledge that I've gained menopause support and what it shares will always be there. Being able to create something that will continue to help other people is hugely important to me. And my third Herman is this is very much a personal thing. And I know lots of people will resonate with it is the importance of my four-legged family and how much joy they have brought to my life. But ultimately, the fact that without one of them in particular, I wouldn't be here. So the joy, the hope, and what you can do as a result of being at a point where you're feeling hopeless. There is always hope. There is life after feeling hopeless.
Claire:It's amazing how often we hear stories of people who have come out of a place of deep hopelessness only to make it their mission to offer hope to others walking the same path. Which makes me think that awful as they are to endure, what an important place hopeless moments can have in our lives when they're used to help others in theirs. In Diane's words, there is always hope. Sometimes we just need a little help to find it, or even to believe it's there. And if you're new to the podcast and wondering what we meant when we talked about Hermann's, they're more than just a question that we ask our guests. They're also a small, handmade grief companion that you can buy for yourself or for someone going through loss. You'll find them at www.thehermancompany.com, and there's a link at the bottom of all our episodes.
Chris:And to find out more about Diane, her book Making Menopause Matter, and her advocacy work, visit her website, which is www.dianedanzebrink.com or www.menopausesupport.co.uk As always, you'll find links in the show notes. And for more about The Silent Why, our story, our journey with childlessness, Claire's blog about PMDD, the full 101 loss list and much more, visit wwwhesilentwhy.com. Or if you're on social media, any platform @ thesilentwhy.com.
Claire:We're big believers in the power of community and shared experience. One group I want to highlight is Together in Surgical Menopause, an online support group I've personally found so helpful. They regularly host speakers, share resources and offer genuine support if you or someone you know is navigating surgical menopause visit www.surgicalmenopause.co.uk for more information
Chris:okay then we always finish our 101 loss episodes with a quote and this one took some digging
Claire:yeah most menopause quotes out there seem to fall into two camps overly optimistic about finding freedom or personal growth or humorous like menopause a pause while you reconsider men by Margaret Atwood also there's some really depressing ones about how awful it is as well but none of them really captured what we were all about on this podcast.
Chris:Not quite what we're after, Margaret.
Claire:Nope. We wanted to find something that reflected reality and the hope.
Chris:And we found it in these words from Carol Parker Walsh, a strong advocate for women and leadership.
Claire:"Regardless of the face menopause takes on for you, don't ignore it, underestimate it or disregard it. Seek support to manage it effectively. Boldly carry your little fan around with you and let people know to expect a few changes. Our After all, you shouldn't have to go through this alone."
