The Dr Louise Newson Podcast - 173 - The challenges of accessing menopause treatment as a young woman

Episode Date: October 11, 2022

In this episode, Georgina talks openly about her struggles to get a diagnosis for her erratic periods since she was 15. In her early 20s, her concerns around fertility were brushed off and she acknowledges she didn’t have the strength and resolve to pursue the issue. Georgina then began to experience low mood, muscle fatigue, joint pains, hot flushes and night sweats. When her mental health dipped further, this became the tipping point and with the help of a supportive mother, Georgina pushed for a formal diagnosis and treatment for her debilitating symptoms. Dr Louise Newson explains the impact of premature ovarian insufficiency and the risk a lack of hormones presents to your future health. Georgina shares the struggle she went through to access the right type and dose of HRT and reminds others to advocate for yourself to get the right help. Georgina’s three tips to young women: Talk openly with other women about periods, sex and vaginal dryness to understand what is and isn’t common Do your own research about your symptoms and the menopause to get enough knowledge to advocate for yourself Be patient with your HRT and give it time to work

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 on my podcast I'd like to introduce to you Georgina, who I've known for a few years now, who is a very inspirational person, who has grown with a lot

of this because she's had to be quite feisty and be a real advocate for herself and her treatment. But she hasn't given up and I'm really pleased that she's a lot better than she was. But she's very kindly agreed to talk a bit about her experience. So thanks, Regina, for coming today. Thank you for having me. So do you mind me asking how old you are? I am now 25. So you're now 25 and you're talking on a menopause podcast. So that means you must be.

Well, not doesn't mean you must be, but it's highly likely that you're menopaus on. Is that right? It is. So 25-year-old menopausal. So I was just Googling, in case things had changed over the last few years, when I Google menopause and go to images and it still comes up as the grey-haired woman with a fan. Now, you do not look like a grey-haired woman, and you have a grey-haired woman, and you haven't got grey hair and you certainly haven't got a fan.

So it can be really difficult for women, for men, for healthcare professionals, for media, for anybody actually, to think that the menopause affects people who are not over the age of 50. And there are a lot of people like you around, aren't there? There are, unfortunately. Yeah. So tell me, how old were you when you were diagnosed with menopausal? So when I was diagnosed, I was 21.

However, I'd been seeking a diagnosis from about 15 or 16 years old. So did your period start sort of naturally or what happened? So they started when I was about 14, but they were never regular or consistent. So I'd have maybe a period and then there'd be three or six months and then another one. And then I had a horrendous run where I bled for about 12 weeks. And that's when I actually went to the doctors to try and find out what's going on. And what happened then? I got referred to see a specialist because they saw that my estrogen and my testosterone were all fairly low.

And I went over to Salford Royal to see a consultant endocrinologist, who unfortunately wasn't the best. So how old were you then when you went to the consultant? I think with the delays in having all the blood tests and everything done, by the time I actually got to see him, I think I was about 18 at that point. Right. But he made quite a big deal about me being in the same-sex relationship. and not to worry because the only effect of having a menopause so early is fertility, and I don't need to worry about that because there'll always be two rooms in my relationships.

So I didn't do anything further than that after that situation until I saw another menopause specialist when I was a bit older about 20-21. So you had a few years then of not having any help? Yeah, I felt quite embarrassed and I didn't feel at that point. I had the strength to carry on pushing when I was struggling kind of physically. mentally at the same time. I didn't feel like I had that internal strength to fight for myself. And were you getting symptoms at that time? Yeah, I had a really, really low mood, horrendous fatigue and muscle pains and joint pains and flushes and night sweats were the worst

for me. But I think until it got to a point where I felt so low in my mental health that I felt like I needed to seek help, that kind of spurred me to do it, but it had to get bad enough if that makes sense. Yeah, which it does make sense, but it's very sad that you had to do that. So when you went to see the consultant who focused on your fertility and outrageously said that it didn't matter if you couldn't get pregnant because your partner could get pregnant, did you have explained any symptoms then at the time?

He didn't really want to hear. I don't think he was very interested, to be fair. I don't think people understand the impact that it has on your life, especially when you're so young and you know you've got to have it forever really. And at the time, did you know anything more about POI or premature oberian insufficiency or menopause? Did you know anything about the sort of health risks or was it just the symptoms that you were really seeking help for? So I am quite lucky to have a mum who is a healthcare professional who's quite, she's ficed to herself and she's very intelligent and knowledgeable.

So she was constantly behind me pushing me because she obviously knew of the adverse health effects of being deficient in your hormones for so wrong. So a lot of thanks to your mother actually because just for everyone to know, we call it premature o'clock in insufficiency P.O.I, which actually affects one in a hundred women under the age of 40, one in a thousand under the age of 30. So more common than actually a lot of other diseases and conditions. But we do know that a lot of women have the same menopausal or perimenopausal symptoms that we get when we're older. Quite a few women actually have less symptoms. I don't know why. But also, every single woman who has low hormones has an increased risk of disease, like you know, Doudina, but the risk of diseases such as heart

disease, osteoporosis, diabetes, dementia, clinical depression. Even some studies have shown things like lung diseases actually, because we've got estrogen receptors in our lungs, psychosis, even drug addiction, kidney disease, you know, sorry, this is quite doom and gloom, but you do know, because hormones are very important, very anti-inflammatory in our body. The good news, however, is that if women have their hormones replaced, the risk of those diseases really does reduce because you're just replacing what's missing. So although it is bad news, there is a good news side of it, as long as women can access the help and get the right hormone replacement, because that can really make a big difference. And the problem is also, is when you've had a diagnosis like that, of course it's going to play on your mental. state. And I see and speak to a lot of women who are told, well, of course you are going to feel like

that because you've just been told, you know, you can't have children or whatever. But actually, even without that news, you haven't got the hormones in your brain working in the same way. So your brain is not going to function. And you felt firsthand how the lack of hormones to your brain was. Yeah, I think that was quite apparent in work because I was struggling to retain information and to do things that you do frequently. So things that you're so used to doing, you could do with your eyes closed all of a sudden, I was like, oh, I can't remember how to do it.

And it's very scary. I remember actually you telling me, I can't remember it was a while ago now, that once you were in a few times, you were in your car, and you couldn't actually remember to open the door? Didn't know if you remember me telling me that? Oh, I can't get the word out, sorry.

That's another thing that I struggle with and still do on HRC. I lose, like, it's like the words getting lost between my brain and my mouth. And that's actually very common. And we see and speak to a lot of women who worry that they've got dementia. And obviously we know dementia does increase in the menopause. It's far more common in women. And there are a lot of women who find this word finding really hard.

And someone said to me recently, it's like monkey chatter. I open my mouth and all these words come out, but it's not what I wanted to say. It's so really helpful. Yeah, but that's because we know hormones are so important and, you know, it makes sense really. If we haven't got the hormones, how can you, well, the same processes occur in the body? And the problem is when it's older women, when we're in our 50s, people will go, oh, yeah, that's because you're a bit older, you're slowing down. But actually, when you're in your teens and 20s, you've got your whole life ahead of you.

You can't be not remembering how to find the handle of the inside of a car door so you can open the door, you know. how to do simple tasks because then it will make work difficult, but also it will make life very difficult. Yeah, I think, so I was in not a new relationship, but I'd been with my partner for a couple of years when the diagnosis came, but it still has such an impact because I felt crazy and she probably thought I was too, because I didn't feel like I could regulate myself and my emotions properly and, you know, remember things and it's hard enough when you've been with somebody for years and years and years and you're in your 50s and they've known you for all that time and can see the changes but when you're young it's i felt like it was even more of an

impact on our relationship yes and it often really does and your partner has been incredibly supportive but there are a lot of partners that aren't and we've just done a survey actually with a family lawyer that i know looking at divorce and unsurprisingly divorce rates increase in the 40s and there are a lot of people who are not understanding that it's related to their hormones. And I mean, I know even the short time I was perimenopausal. My husband just annoyed me in everything that he did. And the times my children still remember, I just would shout at him for no reason. But it's like I had this angry demon in my head telling me that it was quite all right to be cross. And I think it is a common nature, isn't it, that you take things out on your nearest and dearest

because you can sort of get away with it, but actually you forget what it must be like for them. It's really difficult because they're seeing someone that they love and have chosen to be with, but that person's changed in front of them. And a lot of partners then think, oh, what is it me? And maybe I've changed rather than this person's changed. And it can be really difficult. And certainly we see a lot of women who are in same-sex relationship

who are both menopausal together. And that's really... Yes, because neither of them can quite work out what's happening and it usually takes one of them to come and seek help and then, you know, it all unfolds. And I think even when you know what's wrong, it's still hard to regulate that. When you have that kind of rage burning your chest

that's completely irrational, monitoring that can be quite hard, even though you know what's going on. It's kind of hard to rein in sometimes. Absolutely. And I think the thing with people who are young, then they're just not understood. And I'm doing some research with an amazing researcher actually who's in Australia looking at the gender bias and the gender inequality for research, but also for women and the mislabelling of women as well, because we're not often listened to.

And then women are given labels such as depression, or there's now a term called MUS, which is medically unexplained symptoms. And a lot of women we see have been diagnosed with that because no one can put them into a box, you know, not definitely clinically depressed. You know, you're having maybe some muscle pains but you haven't got arthritis. You're having some urinary symptoms but you haven't have a urinary tract infection. You're having headaches but you haven't got a brain tumour. You're having palpitations but you haven't got heart disease. So then you either, the choices, no one listens to you because they say, well, you haven't got anything wrong with you because it doesn't fit into their categories.

Or you're just to go and think, well, no one's listening. So then you're labelled with something that you're probably not. And we know from some studies it can take an average of seven years for people. with POI to be diagnosed and at least seven to ten consultations. And that research came out a few years ago now, but I don't actually know that it's got any better. No, and it's just demoralising for those people that have to spend all that time knowing that something's wrong and nobody actively listening to them. Absolutely. We've got the women's health strategy that the government have worked on and they've had over 100,000 responses to it.

And normally when the government put something out, it can have a handful or a few hundred responses, maybe a thousand. They're huge. So people are listening, but women's health in general, not just menopause, is really very neglected and there's a huge amount of work to do. But a lot of, I think, it is common sense medicine and listening medicine as well. You know, I'm not doing a new type of brain surgery that you have to be really technical for, just allowing women to have their own hormones back and looking holistically at how we can

improve their future health. So when you did get help, I know you had to pay privately initially, didn't you, to get health? And that doesn't come cheaply. So it was a big financial sacrifice, wasn't it for you? Yeah, it was at the time for the interim, because we didn't know how long we'd have to pay, or I'd have to pay for the medication. We did downsize to make sure we had that money available. So you sold your house? Yeah. It just, it made it the easiest way to do. Otherwise, they would have been, as well as the stress of not feeling brilliant, there's then all the extra money that would need to be found for treatment. And rather than have more things to worry about, we thought that the alternative would be better to downsize until we knew that I'd definitely

be eligible for treatment on the NHS. So that makes me, I just want to cry, it makes me really sad because, you know, I'm here founding and running a private clinic. I have, and And, you know, prices are expensive, but overheads are huge, and we give a lot of money out, as people know, to balance app to fund that. We don't have external funding for it for our free education program. But no one should be paying. You know, my biggest marker of success would be to close my clinic because it means that people would get help elsewhere. But actually, all we're doing is expanding and expanding because more and more women need help that they're not getting elsewhere. And we're doing a lot of work behind the scenes to work at how we can reduce costs and make it easy.

easier and allowing women to have more choice. But for somebody as young as you to have to sell your house, so you could get HRT, which is available through the NHS, at a very low cost, a lot of estrogen preparations cost four pounds a month, progesterone, four pounds a month. Testosterone can be a bit more expensive, but 50p to a pound a day. So we're not talking about, you know, we always see, don't we people who have, want to fund a very expensive cancer treatment maybe to go abroad and it's hundreds of thousands of pounds and I can understand then when people have to really crowd fund and sell everything. But actually you're talking about some basic hormones. Like I can't imagine if you had an underactive thyroid gland, you'd have

to do that. Oh, diabetes. Yeah. So I think the system is failing. So you got your HRT and started to feel better, but quite rightly so, the people that you saw like we do in the clinic, we hope that NHS would take over your care. So you went to go and see a gynecologist in you at a hospital, hoping that you would get help and it didn't really happen, did it? Yeah, so I did go to see a gynecologist on the NHS, as per the advice of the private clinic that I was seeing. And when I went to this appointment, he was quite an old man.

And he said that I was on far too high a dose and that I shouldn't be on testosterone for the main reason being it's too messy. see he doesn't like it. It doesn't think I should be on transdermal HRT because again that's messy. I should just swallow a tablet. And he said there's no such thing as body matching HRT. There's no HRT that's better for you. He said all HRT is synthetic. It doesn't matter. But yeah, I needed to completely reduce the dose down to barely anything and that the private clinic were just taking advantage of me apparently. Which is a horrible thing actually to hear, isn't it? and all you want to do is get help.

And I think, you know, it's very hard, obviously, for healthcare professionals to know everything about every condition and treatments change. You know, I mean, I'm quite old. And when I started prescribing HRT, it was very different to the HRT I prescribed now. And the HRT, as you know, from 20 years ago, the WHOHI study very different if it's horses urine came from pregnant horses urine and it was tablet.

You know, we're fast forward and it's the same as the hormones that ovaries normally produce and it's through the skin. so there's no risk of clot. So it's comparing apples with pears anyway. But it is, people seem to get very scared about the dosing that people have of estrogen. And I know when you couldn't get it then, actually, that's when you got in touch with me. And because of the work I do with NHS England, I actually presented you as a case with your permission to NHS England to say, this lady who was, I can't remember how old you were there, maybe 24, is unable to get HRT, which she needs to be on until at least the average age of her menopause, which is 51, but probably lifelong.

So for the next 25 years, it is not reasonable for her to buy HRT privately when she's already had to sell her house to get HRT. And also she's got a whole career ahead of her. She wants to carry on working. And at the minute, she can't work without HRT. So what are you going to do about it? And it went up to Ruth May, who's the chief medical officer. It went to where you live, the prescribing.

And I had some quite heated discussions, actually, with the lead of the CCG because their prescribing guidance was quite out of date. And it was suggesting the older types of HRT should be given first. And actually, the type that they were recommending is more expensive than what you were on as well. And also about the dosing as well, because they were saying you shouldn't have above licensed dose. But we do know that actually a lot of young women, need higher doses just to function, which is absolutely fine and safe, because all we're doing is giving you back what you should be producing. And often we do estrogen levels, and people

tend to need a higher dose. And that's fine, as long as you're not having any bleeding or any problems, then it's perfectly fine to do that. So it has been a real battle. And then you went to see a different specialist, didn't you, an endocrinologist, and things thankfully have got easier, haven't they? Yeah, thankfully. Thankfully, it's not a battle. much more. But it shouldn't be a battle, should it? No, it really shouldn't be a battle. And I think the hardest thing is, as a female being told that you're not eligible or you're not licensed to have these hormones that you desperately need and you have people or the healthcare professionals, doctors telling you that you don't need them because it might have an adverse effect on your

health long term. And I think as a woman, that should be my choice. It's my choice to make whether I want those hormones because of the effects that it's having on me now not having them. And whether I think that that risk, you know, whatever that may be, whether that is a high enough risk to negate the need for it or whether it's something I still want, it shouldn't be for somebody else to make. And I think that's crucially important, everything that we do. And I was lecturing yesterday at the Royal Pharmacology Society meeting in Liverpool, and a lot of it was about patient choice.

And the other thing is we're trying to do some work about what are the risks of not taking HRT. So actually for you as a young woman, you don't really have any risks of taking HRT because you're just replacing what's missing. So we know there's no increased risk of breast cancer. There's no risk of clot or stroke because you're having it through the skin. So actually, the risks of not having adequate HRT are, as we've already said, risk of all these diseases, but also risk that you'll lose your partner, risk that you'll lose your job, risk that your poor mother is going to, you'll be dependent on your mother probably to look up. You know, there's all these other risks, but it then does boil down to choice.

And, you know, we've got decision-making guidance from Nice. We've got the GMC's consent. So we are allowed to, as patients, make choices that are individualised to us. And that's where I feel it's let you down, really, the system, because you weren't allowed to make a choice, were you? No, and I think when somebody has such an impact on your life, I felt like I couldn't function without those hormones. As a person, I felt so low.

I just, my brain doesn't work. And I think any risk I would have taken to be able to live again. Yeah. And so this is where education comes in, isn't it? I think it's, you know, I'm doing a lot of work, obviously, with educating women, but also with educating healthcare professionals. And a lot of people I talk to healthcare professionals don't even realise that, you know, the HRT were prescribing,

is very different, it's very safe, and also that it's very cheap. I think because we prescribe it in the private clinic, they always think it's going to be expensive stuff. But this isn't anything different to what we prescribe in the NHS. And it's allowing people to know that is really important and other healthcare professionals, because it's really important, I feel, as a healthcare professional, that I'm giving people choices that allow them to improve their future health as well.

Because we don't want to be a dream on the NHS. You know, you don't want to have osteoporosis when you're older or heart disease. You don't want to be a drain on your partner because you've got dementia. You know, we want to be the best version of ourselves. And if that means having our own hormones back, age 20, isn't that okay? Why is that not allowed? I know. I just, I don't see why there is an issue surrounding it.

You'd think it would just be a given. Yeah. Someone said to me recently, it's quite a famous person. I won't see who it was. Said to me, Louise, in 10 years time, we'll all be laughing about this. because it's so obvious what you're trying to do, but the blocks that you're getting are just phenomenal. Why is this? And, you know, I wish there was an easy answer because women know what they want. A lot of healthcare professionals are learning what's needed, but there is still a block

by the establishment and by others. And then I feel like it's just been pushed back on women. And, you know, you could have, as a late team, just left that clinic when you first got seen. and I dread to think what your life would have ended up like. It's quite scary, isn't it? Yeah. I think people are so scared of the unknown and scared of starting to prescribe all these hormones. They worry that it will have the wrong impact

and don't give it the opportunity to work. I think as well you have that settling in period, don't you? And so many people throw in the towel because it can aggravate your symptoms first rather than just persevering because it does take time to settle. Yeah, and that's really good advice, actually, for whatever age. We often see people who say that they got worse before they got better.

And I always say, oh, why didn't you, you know, tell us? And they said, no, no, because you always said, give it three to six months. And it really can take that time. And often with time going forwards, people need different doses as well. And I know when I started my HRT, after about three weeks, my mother-in-law, who's been taking HRT for 50 years, came around. And she said, oh, are you feeling better? And I said, I remember I was chopping up some vegetables for supper and everything was an effort, just cutting an onion was like, oh.

And when she asked me, I just said, do you know what, Kay? No, I'm not. And I thought, this is just a waste of time. And it wasn't until I got the right dose and then added in testosterone and then weighted. And it must have been about nine months to a year that I just thought, wow, I wish I'd started this 10 years ago when my youngest child was born because I'm sure my hormones just fell off a cliff then. But I didn't know. I didn't realize. I thought I'd just be tired because I've got three children and I'm busy and then I work's escalated. So it's not often until you, because it can be a very gradual increase as well. And then, you know, there's still life, but it's going to make you feel down and frustrated. And, you know, if I don't do yoga, at least two times a week, I know my mood will go. So I can't play my hormones for that. That's just because I'm not exercising or if I eat the wrong food or if I don't sleep properly. But that's why it's really important we get this. joined up care. But even if I did yoga seven days a week and ate the best diet and slept well, without my hormones, I still wouldn't feel well and I'd have these health risks. So it's really

important, isn't it, that as women who are patient, that we can work it out for ourselves, but then get the help that we want when we see somebody. Yeah, it is important. And I think as well, because it's so hard to recognise by the time you realise what's happening, you're so far down the line already, that it can be hard to take that step and as to help. I totally agree. And I think that's a really good point. And I think, you know, you having your partner, but also your mother, and often we need to look at others to help us. And I think that's where a lot of the work we're doing with education, with a balance app, with the website, with these podcasts, is allowing anyone to sort of join that conversation

and look out for others, actually, because that's really important. So I'm very grateful Georgina, if you're giving up your time and talking so openly, actually. And it is always difficult talking about yourself, but especially when you're so young as well. So I know this will have really helped other people. But there might be people who are listening whose daughters or friends or relatives or work colleagues might be young and not being able to receive help. So just before we finish for three take-home tips, if we may, what three things would you say you think others should do that have helped you to get on the right course for getting better treatment?

I think one thing will be to talk openly, especially with older females that they're close to, maybe the moms, their nannas, other people like that. Because I remember sitting in a doctor's appointment, and it was quite a simple question. I think the doctor asked me, do you have any vaginal dryness? You know, when you're having sex, is it lubricated enough?

And I remember thinking, I've got no idea, what should it be like? I've had hormone issues before I was sexually active. I don't know. So I think being able to talk openly is one thing that is really important and to know even then what periods should be like, how regular this should be, because not everybody does get the opportunity to know that, really.

I think secondly, you have to really research, I think, you have to have the knowledge there to be able to champion for yourself. Because if you can't advocate for yourself, you're likely for other people to do that. And thirdly, definitely be patient with your HRT. Just find the right one. Yeah, that's really great advice. And I know that will help so many people.

So thank you again, Regina. I just keep going because you've got such a great future ahead of you. So thanks so much for today. Thank you so much for helping to raise awareness. Oh, thanks, Gina. Take care. You too. For more information about the parenting,

Menopause and Menopause, please visit my website, balance-menopause.com, or you can download the free balance app, which is available to download from the App Store or from Google Play.