The Dr Louise Newson Podcast - 197 - The problem with medicalising the menopause without HRT

Episode Date: March 28, 2023

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.

Hello, I'm Dr Louise Newsome and welcome to my podcast. I'm a GP and menopause specialist and I run the Newsome Health Menopause and Wellbeing Centre here in Stratford-Bron-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 Joe, who I was introduced to through Dr Rebecca Lewis, who's one of our doctors, as many of you know, who works with us. And she was telling me how inspirational

Joe was and how incredible her story was. And it's not all Rosie, but she's been very keen to be open. And the reason she's going to be so open is to help other people, actually. And as many of you know, most of my work isn't really about helping others so they don't have to suffer. So welcome, Jo, today. Thanks for coming onto the podcast. Thank you for inviting me. Thank you. 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. So for me, the first time I was aware of any issues was in 2015 and me and my husband were in France on holiday and I had a massive bleed. I thought I was

having 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 have 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 sort of outstanding illnesses or anything so and I'm fit them 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'd 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 really, like, you 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 straight away said, oh, right, okay. what do we need to do? What about HRT? And she said, oh, absolutely not. And how old were you then, Joe? So I was 45 and that was the only thing that I'd had. My periods were regular every 28 days. But I was having nights, 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 straight away 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 but she said, look, I'd 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 of still getting hot and sweaty and then probably two years later

so it would be in 2017 I, out of the blue, started getting very bad vertigo. So 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 sort of 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, 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 seasick 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 a period and during the period, I would be very, very dizzy. And I convinced myself then, I think it's where I've had a long haul flight. I don't think I'm going to be able to fly anymore.

I was trying to come up, 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 a very dry mouth, I should be tested for shugons 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 prescribes a talapal. Which is an antidepressant, isn't it? Yeah, yeah.

So I took that for two months, but it made me very nauseous. And I went back and I said, I can't cope with these tablets. You should look, you need to just go away. 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 dizzy and the dry mouth.

I'd never heard of all these things. Yeah, so it's 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 tooth. I'd then had dental implants placed to replace the teeth, still lots of pain, and obviously spent thousands, and they prescribed me amatryptalin 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 I then after a few months went back to the GP and they then put me on Gabapenting, which is a 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. So I'm, you know. Yeah, of course it does. 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 metroscopy 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. Very scary, isn't it? It was terrifying because they kept saying, you just got to persevere. 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 fit bit to bed so that I could track how I was sleeping and things. And I was waking up and my pulse was at 120 beats on waking. And I was saying to my husband,

look, this is crazy. And he's like, you're having a panic attack, Joe. You need calm down. I said, yeah, 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, metrazopine, you'll now give me beta blockers. I'd ask 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 and it would be bad again. But what I was finding is 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 block because I never actually got it dispensed because I thought, you know, it's not really... Well, it all stopped 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 stolen gabapentin and metrazapine and I just thought one morning I got up and I just thought I can't actually live like this anymore I just feel horrendous and this is 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 counsellors because obviously losing your mum, so it 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 to her, I just don't want to be around anymore. I can't go on like this because I'm, I'm taking tablets throughout the night, paracetamol, cocodamol,

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. But 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, look, this is about quality of life now, isn't it? So you can have HRT. But that's what it took.

So 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 like a full history and she said, well, you know, the likelihood of you absorbing because of the IBS, you probably haven't got any of it in you.

So she immediately said, right, let's get you on some gel. We're going to, you know, she was absolutely fantastic. And she said, 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. Well, understandably. You know, 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 with me because it's quite a long drive.

And then when I got to the car park, I put. 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 yeah, so I applied the cream straight away. But it did take quite a few months. For me, I wasn't one of these ladies where it was like two wigs and I'm perfect.

It can often take quite a long time, especially the longer someone has been without their hormones. Yeah. But could you feel things going in the right direction for you, though? So for the first three months, I didn't feel any different really. No. I have my three-month review and I said to Rebecca about it and she said, okay, let's do some bloods. Let's check for absorption because although there's no point in doing it to see if you're menopausal at 45 over, we're going 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 H.R.T. And three months of gel. So she said, well, you know, you're still on the lowish side. You're still, 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? And 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're very poorly afterwards is because all of your estrogen's gone again. And 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. 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 listening are so obviously related to your menopause. 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, postnatal depression. People have this reproductive depression it's called where your brain is just needs hormones more than other people.

Some people don't miss it at all. Yeah. But if you do, and often it is this pattern recognition of people have postnatal depression. They often have PMS as well. Like you say, these psychical changes suggest that your body is very sensitive to having changes. in the hormone levels. Yeah. So presumably she increased the dose, did she, of your hormones?

So she increased the dose and then I was reviewed again in three months and the hot flushes had gone. So that 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 hair coming out, that started to ease up.

The skin wasn't so it. itchy. The vaginal issues continued. And she's, 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 that 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 sight. My ovaries and 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's got to dry and then you have to reapply later so I went on to 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. Yeah, so I just kept going with that. And then after a year, so we are talking quite a long time, I then started to use the testosterone.

And that was just a very small amount every day, like pea size amount. And that helped a huge amount with things like concentration, mood. It helped with mood. It's helped me. 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 the carry a bag of medication. And if you stop that medication now, Jo? Yes. So I started the HRT, the tablet form, and I was still on the gabapentin, the metrazapine. When I started the gel, I said to Rebecca, I'm going to start to titrate off of the gabapentin, which I did. I didn't come off straight away because I know it's dangerous if you're 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 metrazapine because that

helped me sleep. But then I then titrated off of that as well. So all I take now is HRT. Amazing. And 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 pyriminipause. My daughter really saved my life. 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 keep going like this. You know, it's not fair in my family because I just, I couldn't function. Yeah, I completely get that. And, you know, I hadn't realized the enormity of lack of hormones on our brains until I started seeing so many patients. And it's often in medicine, it's this 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 have been on all these medications and thinking, well, what else can I do? I can't give more antidepressants. I can't give more pain because I can't give more this, that or the other. And then it's just common sense medicine, thinking, well, you've got low hormones. I'll give you low hormones, like you say, to protect your bones and your heart. And I often say to people,

I have no idea how many of your other symptoms will improve. But then symptoms like fatigone, like labyrinthitis, like dry burning mouth, dry eyes, dry skin, they often melt away. But it is this, the psychological impact is huge. We know the incidence of suicide increases in the late 40s. and a lot of women are like you, they're different to people who are clinically depressed.

Yeah. And if somebody had said to me, you know, what a nurse going on, I would have been able to say to them, no, I don't want to live the next 30 years. Bear in mind I wasn't quite 50. I don't want to do 30 years of every day crying, wandering around in the 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 going to end up with a stomach-hulsome. 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 them. 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 my life. 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 types of HRT, as I'm sure you know, the risks are either not existent or very, very low. The risk of death from suicide is 100%. Most women who have 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 being 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 metasopene 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 are allowed to make a choice. And I think 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 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 10-minute consultation and you want to protect people. And your form of protection was actually thinking, well, If I am my life, then everyone can get on. Well, of course, you know, suicide is often thought of, is quite selfish because they're what you've left behind. Of course, of course. But it's that, you know, it's 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 any emotion away from it, thinking about I'm doing some work with some health economists at the minute, but 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 peanut. It costs so little compared to it,

and I bet you're not going back to your doctor nearly as often as you were. I haven't seen them for two years, only for the repeat prescription, you know, because I perfectly sound. I mean, that is the advert, isn't it? I don't need to go in and say, 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. Well, you're absolutely right. 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? I totally agree and education is really key. And it's about joining the dots, isn't it? So 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, Joe, is really, really kind. And I'd 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 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 thing 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. Well, one thing I had done was I had a period tracker on my phone and I've 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 at a glance and see if things are changing. you know if you're getting 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 an eye shot 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 You know, it's my life, and if I don't understand it, 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 them permission.

It's not like a dirty secret for a long time. 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. Yeah, really, really important. Get help, get information and talk about it. Really crucial. And I thank you so much. I really do, Joe, for your time today. Thank you. Thank you. For more information about the perimenopause and menopause, please visit my website, balance hyphen menopause.com or you can download the free balance app, which is available to download from the App Store or from Google Play.