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The problem with medicalising the menopause without HRT
Advisory: this podcast contains themes of mental health and suicide.
In this episode, Jo shares a moving account of her menopause experience before finding the right treatment for her.
Struggling with numerous symptoms including vertigo, dry mouth and eyes, joint pain and vaginal dryness, Jo went from not visiting her GP for six years to monthly appointments. After being prescribed a cocktail of medication and spending thousands of pounds on dental treatment to no avail, Jo felt she was never going to get better.
She talks to Dr Louise about the effect of low hormones, and the transformative impact finding the right dose and type of HRT had on her mental and physical health.
Jo’s three top tips:
- Download a period tracker, such as the balance menopause support app, to track your periods. This will help you notice any changes and identify any patterns of other symptoms occurring.
- Educate yourself: try to read as much as possible about the menopause so that you can understand what’s happening with your body.
- Reach out to friends: by being honest and saying how you’re feeling, you can help others to open up too.
Advisory: this podcast contains themes of mental health and suicide.
Dr Louise Newson [00:00:09] Hello, I’m Dr Louise Newson and welcome to my podcast. I’m a GP and menopause specialist and I run the Newson Health Menopause and Wellbeing Centre here in Stratford upon Avon. I’m also the founder of the Menopause Charity and the menopause support app called balance. On the podcast, I will be joined each week by an exciting guest to help provide evidence-based information and advice about both the perimenopause and the menopause. So today I’m going to introduce to you someone called Jo, who I was introduced to through Dr Rebecca Lewis, who is one of our doctors, as many of you know, who works with this. And she was telling me how inspirational Jo was and how incredible her story was. And it’s not all rosy, but she’s been very keen to be open. And the reason she’s wanted to be so open is to help other people, actually. And as many of you know, most of my work is really about helping others so they don’t have to suffer. So welcome, Jo, today. Thanks for coming on to the podcast.
Jo [00:01:17] Thank you for inviting me. Thank you.
Dr Louise Newson [00:01:19] So you’re sitting there looking very happy, very well. But it’s not always been a positive journey for you. Do you mind just summarising? I know there’s a lot, but just summarising a little bit about what happened, if you don’t mind.
Jo [00:01:32] So for me, the first time I was aware of any issues was in 2015. Me and my husband were in France on holiday and I had a massive bleed. I thought I was having a miscarriage. I’d always had regular periods and so I’m out of the country, I have this massive bleed and I said to my husband, as soon as we get home, I’m going to go to the GP. Now I hadn’t been to see my GP for probably five or six years because I’ve got no outstanding illnesses or anything and I’m fit and well. So, when I got back to the UK, I made an appointment, went to my GP and she said ‘right we’ll do a blood test’ and I thought she was going to be doing a pregnancy test to see if I had a pregnancy that I’d lost. But a couple of weeks later the receptionist called me and said ‘you need to come in and speak with the GP’, which I did. And she said basically, it’s nothing to worry about at all. You’re one of the really lucky ladies, we’ve caught you at exactly the right time in your cycle. Your follicle stimulating hormone is high and you’re in menopause’. And I straightaway said, Oh, right, okay, well, what we need to do, what about HRT? And she said ‘Oh, absolutely not’.
Dr Louise Newson [00:02:38] And how old were you then, Jo?
Jo [00:02:40] So I was 45 and that was the only thing that I’d had. My periods were regular every 28 days, but I was getting warm at night and sweaty and I had been for a couple of years, but it wasn’t really a problem for me, I was coping with it. So that bleed was the only thing really that had taken me to the doctor. But she said, ‘Oh, absolutely not. You can’t have HRT because if you start it now in five years, you’re going to have to stop it’. And I straightaway thought, I don’t quite understand that because in five years my ovaries won’t be working, so I’m still going to be in menopause. She said, Look, I highly recommend that you don’t, so you just carry on as you are, you’ll be absolutely fine. And so I did. That was it for probably about two years. I didn’t have any other bleeds after that. It was just a one off. I was still getting hot and sweaty and then probably two years later, so it would have been 2017, out of the blue, I started getting very bad vertigo. I would get up in the morning and it was like I’d been on a fair ride, I’d be dizzy, I’d be walking around, almost stumbling like I was drunk, struggling to drive. If I turned my head quickly, I was sort of all over the place and I thought I had labyrinthitis. I went to the GP and saw another GP and they said ‘oh no I don’t think it’s that’. They checked to see if I had a middle ear infection, and it wasn’t that. And I then basically came home and I started to self-medicate with sea sickness tablets to try and calm things down and that went on for a year. So, it was constant, it was every day, some days were worse than others. And I started to notice that it was with my cycle that it would get worse. So, before my period and during my period, I would be very, very dizzy. And I convinced myself then ‘I think it was where I’d had a long-haul flight, I don’t think I’m going to able to fly anymore’. I was trying to make sense of what was going on because it was just such a strange symptom to have. And then I started to get some other symptoms. So, hair was starting to come out, skin was very itchy and dry. My eyes were incredibly dry. I saw the optician and she noted that my eyes were very dry too and recommended artificial tears. But she also said because I was getting very dry mouth, I should be tested for Sjogren’s syndrome because of the dry in the eyes and the dry mouth. So I went back to the GP, had a blood test and it wasn’t that. And then in this time my mum became quite poorly and passed away. So, then each time I went to the doctor I had all these mysterious things going on and she said ‘You’re depressed. Basically you’ve got depression’. So she prescribed citalopram.
Dr Louise Newson [00:05:25] Which is an antidepressant isn’t it?
Jo [00:05:27] Yeah. So I took that for two months, but it made me very nauseous and I went back and I said, you know, I can’t cope with these tablets. She said ‘look, you’ve got to persevere with this. This is depression, you know, you’ve lost your mum’. And obviously I was quite upset about all of that, but because of these symptoms I was having, you know, the mouth was so dry, it was becoming very sore. My eyes were incredibly dry, inside my nose. My vagina was very dry, very uncomfortable. Skin was itchy. Joints were starting to hurt, my knees, my hips. You know, I just felt like I was falling to bits. Literally. I’d gone from not seeing a GP in six years to going almost monthly and with very strange symptoms that you wouldn’t associate maybe with menopause unless you knew, you know, the dizziness and dry mouth, I’d never heard of these all things. Yeah. So I was back and forward, tried the antidepressants didn’t get any better went back, saw another GP and by now my mouth is really bad and I’m going to the dentist. I’ve had teeth taken out because I’m convinced I’ve got bad teeth. I then had dental implants placed to replace the teeth. Still lots of pain and obviously spent thousands and they prescribed me Amitriptyline for nerve pain in my mouth. And again that didn’t help. I took that for quite a few months, but it dried my mouth out even more because obviously that’s one of the side effects, isn’t it, the drying of the mouth. So then after a few months I went back to the GP and they then put me on Gabapentin, which is really sort of heavy duty drug. I had to gradually build up on that, 300 then to 600 then to 900, still no better. And actually now starting to feel really poorly because it’s an anti-epileptic drug and it does affect your brain. Yeah, it was a hideous time. I didn’t get any better on the Gabapentin. I stayed on it for quite some months and then went back to the GP and I was put on Mirtazapine because I wasn’t sleeping. So I’m now on a cocktail of heavy duty medication, no better and just feeling absolutely dreadful. And this feeling that I’m never going to get better.
Dr Louise Newson [00:07:50] Very scary isn’t it?
Jo [00:07:51] It was terrifying because they kept saying you’ve just got to persevere. You just go and take the antidepressants, keep going, eventually you’ll be okay. I then went back to the GP because I was getting palpitations. So at night I would wear a Fitbit to bed so that I could track how I was sleeping and things and I was waking up. My pulse was 120 beats on waking and I was saying to my husband, ‘look, this is crazy’. He was like ‘you’re having a panic attack, Jo. You need to calm down’. I said ‘but there’s nothing wrong. I don’t know why this is happening. Went back to the GP and she said to me, well, I can sort that, I’ll just give you some beta blockers. And I said, yeah, but what is causing this? Because I’ve gone from never seeing the doctor for anything. I’m now on Gabapentin, Mirtazapine, you’re now giving me beta blockers. I’d asked for HRT because I could see that there was a cycle that when I was getting the period, it would get much worse and then it would subside a bit, but it wasn’t going completely, it would just get slightly easier and then the period would come, then it would be bad again. But what I was finding was as time was going on, the length of time that I was poorly and how long it would subside was getting shorter, so I wasn’t getting any good time in the end. I was pretty poorly all the time, so I took the prescription for the beta blockers. I never actually got it dispensed because I thought, you know, it will stop the palpitation, but something’s causing this to happen to me. And that was 2019 then, in March. So I’d gone from 2015 with the bleed, and probably a few years before that, having the hot flushes, to 2019, and in the March, I was very, very low. I was obviously still on Gabapentin and Mirtazapine. And one morning I got up and I just thought, I can’t actually live like this anymore. I just feel horrendous. And I’m not going to get better and I’m doing everything the doctors said. I was walking, I was doing yoga, I was having counselling because they said, go and get some counselling because obviously losing your mum, so I was paying £50 a week for that. I’d spent nearly £6,000 on teeth and my mouth wasn’t better. And so I don’t know why, this one morning I got up and I just thought, I can’t actually continue like this. This is not fair on my family. I’m just a complete burden. And I thought they’re actually going to be better off without me. And I know that sounds incredibly selfish, but I really was very hard to be with because I just wasn’t sleeping. I couldn’t eat well because my mouth was so sore. Yeah, it was just horrendous. My daughter works with me and my husband and she knew immediately she was like, What’s going on? What’s the problem? And I said, Oh, no, I’m okay. I’m just struggling a bit with my mouth today. And she said come on, Mum, clearly something’s not right. And I said, I just don’t want to be around anymore. I can’t go on like this because I’m taking tablets throughout the night. Paracetamol, co-codamol. I was taking aspirin for the pain and all the Gabapentin and everything and she immediately said, ‘right, that’s it, we’ve got to go to the doctor, I’m going to the doctor with you today’. And she actually came with me because I couldn’t even really advocate for myself then, I was in such a state and thankfully the doctor that I saw, he said, ‘well, this is about quality of life now, isn’t it? So you can have HRT’. But that’s what it took to give me the HRT. So I got the HRT and it was a tablet form, but I had IBS, so I took it for five months. I started in the March and by the August I was no better. And that’s when I came to you guys and I had my consultation with Rebecca, and I explained to her everything that had gone on and that I was no better. And she did a full history. And she said, ‘well, you know, the likelihood of you absorbing because the IBS, you probably haven’t got any of it in you. So she immediately said ‘right, let’s get you on some gel’. She was absolutely fantastic. And she, you know, she actually listened to me and said, look, we are going to get you. Well, don’t panic, because she could see that I was in such panic.
Dr Louise Newson [00:12:09] Well, understandably.
Jo [00:12:10] She said, ‘we’re going to get you, you are going to be okay. And I was able to get the HRT immediately. And I can remember, my husband had come in with me because it’s quite a long drive, and then when I got to the car park, I put the gel on in the car park. Yeah, it was hilarious because I just thought, I’ve got to get well, I can’t go on like this. And so I applied the cream straightaway, but it did take quite a few months for me. I wasn’t one of these ladies where it was like two weeks and I’m perfect again.
Dr Louise Newson [00:12:37] And it can often take quite a long time, especially the longer someone has been without their hormones. But could you feel things going in the right direction for you, though?
Jo [00:12:48] So for the first three months, I didn’t feel any different, really. I had my three-month review and I said to Rebecca about it and she’s said, ok let’s do some bloods, let’s check for absorption, because although there’s no point in doing it to see if you are menopausal at 45 or over, we go by your symptoms, but we can check to make sure you’re absorbing. So I had a blood test and my estrogen was 200 and that was after the five months of oral HRT and three months of gel. So she said well, you know.
Dr Louise Newson [00:13:16] So it was still on the lowish side.
Jo [00:13:17] So yeah, you’re still low. She said I need you higher than that. And interestingly when I had my consultation, she talked to me about everything really from, you know, how was I in pregnancy and everything I said to her well, actually when I was pregnant, I felt amazing. I was at my fittest in my pregnancy. I was running around, cycling. But after I gave birth, I suffered very badly with postnatal depression. And she said, well, some ladies are very well on very high estrogen and that’s why you were so well when you were pregnant, and the fact that when you’ve given birth and you were very poorly afterwards is because all of your estrogen is gone again, and then it’s almost like you’re in a mini menopause. And that was the first time someone had even made the connection with why I had been so poorly after delivering a baby.
Dr Louise Newson [00:14:06] And it makes sense, doesn’t it? When you think about it, it makes complete sense. But if you’re not taught, it’s like anything, you know, all those symptoms you’re listing are so obviously related to your menopause. But if you don’t know, and the pieces aren’t being joined together, then it’s so fragmented, you’ve got no idea. And it’s the same with pregnancy and postnatal depression, people have this reproductive depression, it’s called, where your brain just needs hormones more than other people. Some people don’t miss it at all, but if you do and often it is this pattern recognition that people have postnatal depression, they often have PMS as well. Like you say, these cyclical changes suggest that your body is very sensitive to having changes in hormone levels. So presumably she increased the dosage did she, of your hormones?
Jo [00:14:53] She increased the dose and then I was reviewed again in three months and hot flushes had gone. So it was great. That was one thing that went quite quickly. The burning mouth was the very last thing to go, and it was my worst physical symptom, you know, it was affecting my eating, my sleeping. I was in pain with it all the time. But things like the hairs coming out that started to ease up, the skin wasn’t so itchy. The vaginal issues continued. And again, she said, Look, for some women you need localised estrogen as well. Don’t panic. She was wonderful because she just kept reassuring me because I really thought, I think I must be the only woman like this, you know, everyone else I was chatting with friends were saying, oh, I’ve gone through it. And I kept thinking, Well, you don’t go through it because there’s no end in sight, my ovaries will never work again. So you might not be getting any symptoms, but that’s not to say that things aren’t happening with your bones or with your brain or your heart because you can’t see those things. So yeah, so I had a review with her and she said, look, we need to get you a little bit higher. So I went a little bit higher on the estrogen. But she said, I think we need to get you on patches because obviously you’re putting this on and then it got to dry and then you have to reapply later. So I went onto patches and patches suited me really well because I didn’t get the peak and trough, you know, applying it. And then by the next morning I would need it again. Whereas with the patch, it was three days’ worth. So I found the patches fantastic. They’ve suited me much better. So I just kept going with that. And then after a year, so we are talking quite a long time, I then I started to use the testosterone and that was just a very small amount every day, a pea size amount and that helped a huge amount with things like concentration, mood, it helped with mood. I’m running. I feel like I’ve got more stamina. Yeah. So it’s been life changing, but it’s frightening because I was literally with a carrier bag of medication.
Dr Louise Newson [00:16:59] And have you stopped that medication now, Jo?
Jo [00:17:01] Oh, yes. So I started the HRT, the tablet form, and I was still on the Gabapentin, the Mirtazapine. When I started the gel, I said to Rebecca, I’m going to start to titrate off the Gabapentin, which I did. I didn’t come off straightaway because I know it’s dangerous if you are on quite a high dose to suddenly stop that. So I had to do that over a period of time and I continued with the Mirtazapine because that helped me sleep. But I then titrated off that as well, so all I take now is HRT.
Dr Louise Newson [00:17:32] Amazing
Jo [00:17:33] I’m 100%, you know, I don’t have any symptoms whatsoever now. You know, I feel as I did before I started to go into perimenopause.
My daughter really saved my life and it horrifies me now because I’m not a negative person. I’m very upbeat, I’m very positive. Like I said, I was a Samaritan for a few years, you know? So I’ve always been quite an outgoing person as well. And to think that I got to such a place and, you know, it’s not attention seeking. This was literally like, I don’t think I can keep going like this, it’s not fair on my family because I just I couldn’t function.
Dr Louise Newson [00:18:13] Yeah, I completely get that. And, you know, I hadn’t realised the enormity of lack of hormones in our brains until I started seeing so many patients. And often in medicine it’s a sort of pattern recognition because obviously there are so many diseases, so many conditions, we can’t always see everybody with a certain condition. And suddenly seeing people in my clinic like you, who’ve been on all these medications and thinking, what else can I do? I can’t give more antidepressants, I can’t give more painkillers, can’t give more this, that or the other. And then it’s just common sense medicine. Anyway, You’ve got no hormones. I’ll give you the hormones, like you say, to protect your bones and your heart. And I often say to people, I have no idea how many of you have the symptoms will improve, but then symptoms like vertigo, like labyrinthitis, like dry burning mouth, dry eyes, dry skin. They often melt away. But it is this psychological impact is huge. We know the risk of, or the incidence of suicide increases in the late forties. And a lot of women are like you, they’re different to people who are clinically depressed.
Jo [00:19:19] If someone had said to me, you know ‘what on earth is going on?’ I wouldn’t have been able to say to them I don’t want to live the next 30 years, bearing in mind I wasn’t quite 50, I don’t want to do 30 years of every day crying, wandering around in a fog. I’m in agony with my knees, my hips are absolutely killing me. I’m taking paracetamol, ibuprofen, co-codamol, aspirin through the night. I’m probably gonna end up with stomach ulcer. For the next 30 years? You know, I had no joy in my life whatsoever. I was saying no to friends to go out because I just thought I can’t be with them, they don’t want to look at me. And it was so obvious that I was struggling. I couldn’t hide it. You know, friends were worried about me. They were saying, are you okay? What’s going on? And I did open up to a few friends. Not everyone knew how bad I was, but some friends did. But I was no fun to be with or to live with. And the thought of 30 years like that, you know, that’s terrible. And for me, HRT has been that silver bullet. And I know it’s not for everyone, and I say to friends now, you know, I’m not trying to push it at all. If you don’t want to go on it, that’s fine. And some ladies can’t go on it. And I get that. But for me, it’s literally saved my life.
Dr Louise Newson [00:20:34] Saved your life. And I understand that. And I think what’s really important for all the clinical work I do is patients being involved in deciding. And it’s this shared decision making is really, really key. And for most times of HRT, as I’m sure you know, the risks are either non-existent or very, very low. Yet the risk of death from suicide is 100%. Most women who’ve had breast cancer don’t die from breast cancer, and most types of HRT aren’t associated with a risk of breast cancer anyway. And so what’s sad when I hear your story and other people’s stories is that you haven’t been allowed a choice. Now I cannot tell you what the long-term risks of Gabapentin are because the studies have never been done. I can’t tell you what the risks of Mirtazapine are. You’ve already said there’s a risk of ulcer with anti-inflammatory medication. So, you know, it’s really important that women, patients, are central to any consultation and are allowed to make a choice. And I think that sharing your story has, obviously it’s very hard to listen to, but hopefully it will allow others to think, no, well, I don’t need to get to that situation and know how they can bring others in to help be your advocate, because it’s all consuming sometimes when you have low hormones, especially in your brain and like you say this fog, it can be very difficult to explain exactly how you’re feeling, especially to others, especially when you have a ten minute consultation and you want to protect people. And your form of protection was actually thinking, what if I end my life? Then everyone can get on. But of course, you know, suicide is often thought of as quite selfish because they’re what you’ve left behind.
Jo [00:22:16] Absolutely, of course.
Dr Louise Newson [00:22:17] How sad that there’s no way out really for you at that stage. And I understand that. And the other thing is even taking it any emotion away from it, thinking about, I’m doing some work with some health economists at the minute, well let’s look at how much money was spent on you with all your consultations, all your medication, and now look what’s spent on you, you know, HRT is peanuts and it costs so little compared to, and I bet you’re not going back to your doctor nearly as often as you were.
Jo [00:22:48] I haven’t seen them for two years, only for the repeat prescription, you know, because I am perfectly sound. I mean, that is the advert isn’t it? I don’t need to go in and say I’m well, because the fact that I’m never there. I’m sure in the end they must have been flipping a coin to say which doctor was going to see me, because I was there all the time, and none of them would have wanted to see me because I kept saying, can I have HRT? Can I try it? At least try it, because I could see that it was getting worse each time with the period and I thought, this must be to do with my hormones.
Dr Louise Newson [00:23:19] Well, you’re absolutely right.
Jo [00:23:20] You know, and I think because this isn’t like me trying to get at the GPs because I feel sorry for them, because if they’ve not had this as an undergraduate and they don’t, if they’ve not been told about this, how are they meant to recognise the symptoms in their patients?
Dr Louise Newson [00:23:33] I totally agree. And education is, is really key and it’s about joining the dots isn’t it. It’s education for the healthcare professionals and education for women, but not just women who are suffering, but all those around so they can join the dots so that people haven’t got to go through what you’ve gone through. And I wish I could say that this is the first time I’ve heard a story like this, but it’s not, and it won’t be the last. But you sharing your story today, Jo, is really, really kind. And I just like to add that this is actually Sunday that we’re recording this, on Mother’s Day, but it was such an important story to share that I think it will resonate to people. And I think the big learning point from all of this is if you have friends, relatives, work colleagues who are, look like they’re struggling and changing and they’re telling you what they’re on other medication, whatever age they are, it might be worth giving them some information or saying maybe download the balance app, just read and have a little think because it could be completely life changing for that person. So I’m very grateful for your time, Jo, but before we end, I always end with three take home tips. So three things. If someone’s listened to this clearly quite distressing story and thought, right, that’s me or someone I know, what three things would you say that you wish you’d known before that perhaps could have helped? So three things that might help someone who’s in a similar situation.
Jo [00:25:00] Well, one thing I had done was I had a period tracker on my phone, and I had that since 2010. So I would say definitely for anyone, you know, any woman, any young girl, everyone has a mobile phone. I would say download the app balance because you can log when your periods are coming and how long they’re lasting and any symptoms that you’ve got so that you can then look a glance and see if things are changing. You know, if you’re suddenly starting to get migraines or you’re suddenly starting to feel dizzy or something, it’s all there so that you can see then just a snapshot that things are changing. I think that’s really, really helpful. I would also say to educate yourself, because I have got so many books that I’ve bought, that are evidence based because I want to understand what’s happening to my body, it’s important. It’s my life, and if I don’t understand that, I can’t get the help that I need. So I would say definitely trying to read as much as possible so that you can understand what’s happening with your body. And also to reach out to friends. Because by you being honest and saying how you’re feeling, you don’t know they might actually be feeling the same and not feel that they can open up. It almost gives everyone then permission. It’s not like a dirty secret. For a long time, I think we’ve not been able to talk about the body and periods, you know, because it’s like a taboo subject. And that’s added to the problem because no one’s talking about it. So then if you’re struggling you don’t then talk about it.
Dr Louise Newson [00:26:37] Really, really important. Get help, get information and talk about it. Really crucial And I thank you so much, I really do, Jo for your time today.
Jo [00:26:49] Thank you.
Dr Louise Newson [00:26:53] For more information about the perimenopause and menopause, please visit my website www.balance-menopause.com. Or you can download the free balance app, which is available to download from the App Store or from Google Play.