The Dr Louise Newson Podcast - 091 - Being Young & Menopausal - Hayley Etherington & Dr Louise Newson

Episode Date: March 22, 2021

In this podcast, Dr Louise Newson chats to Hayley Etherington, a young woman who has been menopausal since the age of 14. Hayley talks openly with Dr Newson about her experience and how, even though she was given HRT as a teenager, she has been struggling with many different symptoms for so many years. Hayley's GP didn't make the connection between her symptoms and her menopause diagnosis and never suggested that she may be on the wrong type or dose of HRT. Since having a virtual consultation with Dr Newson at the Newson Health clinic, Hayley is now on a new regime of HRT and says she feels like a new person, one who feels well and is full of energy. Hayley has decided that now is the time to speak out about her premature menopause which she held inside for 25 years, in the hope that it may help others who are experiencing something similar. Hayley's Three Take Home Tips: You know your body - not the doctor. Be persistent if you feel you are not getting the right help. Get a second opinion, try other GPs or see a menopause specialist if you can. Find your tribe of ladies. There is support out there for you - you are not alone. Follow Hayley on Instagram: @prematuremenopause14 Read Hayley's blog: https://hayleysmenopause14.blogspot.com/   

Welcome to the Newsome Health Menopause podcast. I'm Dr Louise Newsom, a GP and menopause specialist, and I'm also the founder of the Menopause charity. In addition, I run the Newsom Health Menopause and Well-Being Clinic here in Stratford-upon-Avon. Today I have great pleasure introducing to you someone called Haley, who I actually met via Instagram. I've seen to meet a lot of my new friends, as it were, through Instagram. And Haley emailed me her story and it really stuck with me.

I have a lot of sad stories that I hear all the time. But some of them resonate even more and make me more determined to help even more women. And Haley's was one of them. So thanks, Haley, for joining me today. Thank you. Thank you for asking me. So it took you quite a lot, I think, to write the email telling me about what had happened to you. Do you mind just talking through about your experience, your journey really, if that's okay?

Yeah, it's fine. So I was 12 years old when I started my periods and they started and were going on yearly. And then all of a sudden they stopped. And I didn't really think much of it at the time. So I just thought, well, I'm one of the younger girls out of my friends who have started their periods anyway. So sort of just thought, well, probably start again. But then they didn't. And I started having really bad night sweats, hot flushes while I was in class at school.

I'd be sitting there thinking like, what's going on? Why do I feel like this? So how else were you then? So that was 13. Gosh, okay. So I kept just not feeling right. And I kept saying to my mum that I felt weird. And she was like, what do you mean you feel weird?

I was like, I don't know, mum. I just don't feel myself. She was like, would you feel ill? And I was like, no, but I just feel weak. Like I said, I couldn't explain how I felt. I just felt weird. So she said, right, I think this time we obviously go and see the doctor. So I went to see my doctor and he was quite good to be honest.

He referred me straight away for a blood test and he didn't make any sort of presumptions or anything of what he thought it was going to be. And then I got a letter through saying that the gynecologist wanted to see me. So then we knew that there was a little bit more obviously going on. So I went for the appointment at the gynaecology and they done a skis. scan when it revealed that I have a wound, but it's very small, and that they could only find one ovary, and the ovary that they found basically didn't have any eggs in it. So they said, basically, you've gone through menopause. Here's some HRT, which you need to take to protect

your bones against osteoporosis. You'll have a monthly bleed every month in case you wanted to try a sort of IVF egg donation later on down the road and see you later, really. Gosh. So a huge thing to go through. Had you ever heard the word menopause before? I don't think so. I think back then it was more like an older lady who'd be near me and they'd get a bit hot and they'd sort of fan their face and say, oh, don't mind me. I'm just going through the change sort of thing. So yeah, I don't think I really understood it, to be honest. And say my mum, one that took the news the worst on the day, she sort of sat there crying and I was like, mum, it's all right. I'm okay. I stop crying. And, you know, stop crying. I just remember the consultant saying to my mum at the time, well, she's not going to understand at the moment anyway. It's not as if she's trying for a baby. And that's what I took away from that day, literally, was that the menopause was that you no longer have periods and you were

unable to have a baby because they never explained anything else to me. I was not given any advice of sort of where to go, what to look at, or just nothing, no support or anything. So I sort of left that room that day. And to be honest, I don't think I let it even bother me. I just carried on living my normal teenager. And it was only later on sort of in my mid-20s that it really hit me, to be honest. Yeah. And so you took the HRT and did it make you feel any better?

It made me not feel so tired because I did always find that when I finished school, I was always like wanting to have a quick nap. But then because I was a teenager, I didn't want to miss out. I'm going out with my friends and things. So I just didn't really let it get to me. I just sort of carried on life, say, as a normal teenager, really. I didn't want to draw attention to myself that I was sort of different to my friends. I kept it to myself.

So, yeah, I kind of just planted it at the back of my head, really, and just got on with him. And then did you see the gynecologist again, or was that just the only appointment you had? Yeah, that's literally the only appointment I've ever had. And although now, like, I kick myself because I think, I just put, and my mum, we just put all our trust in the NHS. They said that that had happened and that I needed to take HRT. I think they said up until like the age of 60 or something, but obviously now I'm going to be on it to a day I die. But so that's literally, they told us. And so we are a bit annoyed of ourselves that we didn't do any more about it.

But you didn't, you didn't know to do anything different. So how old are you now, Haley, just to that everyone know? Yeah, I'm 40 now. I was 40 at the end of January. So it's a long time. And then what sort of made you contact me? Can you remember? Yeah. So I, basically, so I've decided to not try IVF. I think with me, because I knew from such a young age that I was never biologically going to have my own baby,

for me, the one of being pregnant and things like that, it just wasn't there. I always had it in my head that I would be a mum for adoption, basically. So I actually started an account, well, my Instagram account was originally. in an adoption account following my journey on there. And I done a sort of, this is a face behind the post and spoke for the first time ever about my premature menopause on social media. And then I kind of done some hashtags and then started getting a lot of messages

of people. And they were like, wow, like, was you really that young and that? And then I thought, hold on a minute. I think that this could actually help people by doing this. So yeah, so it was my adoption really that sort of, started my account off and then now I've actually turned the account more into a menopause account really because obviously I'm reaching out and helping more ladies so yeah which is the most amazing feeling isn't it to be able to help but then it's also very sad I feel sad most of the

time actually because I feel very frustrated for women who have been denied the right treatment actually and being misinformed and many doctors don't even know that the menopause can occur so young you were very fortunate that you had a diagnosis, but then you weren't actually reviewed, and the guidelines are clear that women should be reviewed at least every year, but also the sort of dose and type of HRT you were on was not the right one for you, really, was it? No, because I kept going back to the doctors over the years with constant symptoms, which now I obviously know are menopause symptoms, because the thing is with me, when I was diagnosed, I looked on the internet, and the only thing I could find was that

menopause was related to ladies, say, in their 50s. So I would read that and think, well, that's not relevant to me. So I don't want to look at it sort of thing. So, yeah, so for years and years, I've literally probably had every single menopause system going and presented them at my GP. And there's just never been any link. I've been made to feel as if I was like some sort of fibrochondriac, to be honest, because I'd go and say that I had all these symptoms and they'd say,

oh, no, there's nothing wrong. and there was a few that, yeah, they did refer me, like my heart palpitations, obviously they couldn't ignore those. So I got referred and had the monitor on and had to press the button and sort of wearing for 24 hours. That come back fine, luckily, but still there was just no link made that it could have been a menopause symptom or that I was on the wrong HRT, basically. So it's very frustrating, isn't it, as a patient, when you want help and people say, well, there's nothing wrong, but there is something wrong. Even palpitations, we see a lot of women in my clinic who have had like you heart tests and they've been told where they're

cardiovascular issues, but everything's fine. And it's reassuring to know that your heart isn't disease, but actually it's not telling you what's causing the symptoms that you're actually experiencing. So that can be very frustrating as a patient, can't it? Yeah, definitely. And I would have panic attacks and just I wouldn't know why they were happening and say just so many other things like ringing in my ears and allergies. I had a really bad allergic reaction to some hair die, which I've been using for years, but all of a sudden, this allergy just started. And then they never linked anything with the menopause ever. And I'd say, I remember when I was younger, my sister would be really well, and there's me just constantly at the doctors with things.

And she'd be like, you're always ill. I'd be like, whoa, like what? It's weird, ain't it? But we just never thought that it was linked with menopause, because say, I'd never been given sort of any support or anything. I just didn't realize that they were all sort of linked together. really. And I think that's really important also to think about HRT because a lot of people think there's just one dose, there's one type, and there are obviously different doses and different types. And now you're on a completely different regime, aren't you, of hormones? Yeah. And thankfully, you're feeling quite a lot better, aren't you? Yeah, I literally feel like a duracell bunny, if I'm honest. So it's just before, I would always

just feel like that sort of feeling. Like, I didn't be. have any youth in me and that. Whereas now, I've started on testosterone, which has definitely made a big difference because my libido was shocking, and it's definitely helped with that. So my hair has gotten such better condition since I've been on the body identical HRT. I unfortunately suffered with really bad vaginal dryness, so since you've put me on Vagifem, that's completely changed that. I used to go to the doctors with UTI, CIRS. symptoms and fresh symptoms and they'd do the test and nothing would come back. But I went for 25 years without vaccine.

So it's a bit, so my bladder, unfortunately, is sort of not very good. Yeah. And how long did it take you after changing your HRT to start to feel better? I'd say three to four months, really. At the beginning where I changed, like I've got all the sore boobs and everything again because obviously just changing the estrogen, isn't it? So, yeah, so I would say three to four months. But now, so my hair and everything is just so much better.

I used to get, like, rushes on my chest behind my ears. Like, they've all gone. I just feel well now, to be honest. Which is quite something, isn't it? And I think certainly when people have had a long time without hormones, some even doctors think, oh, well, there's no point changing because their body won't adapt. And it can take a while. And, you know, sometimes it can take even longer than three or four months to really notice a difference.

But it is important to persevere and any side effects are often quite transient, as you've found. Because we're all different and our requirements are different and younger women often need higher doses of estrogen and also benefit from testosterone than perhaps older women. But the hormones are really important. And the type of HRT you were given before was a synthetic type, which was a tablet, wasn't it? And also you were told to have your periods every month. Whereas actually, if women are young, they can see. still take the type of HRT that doesn't give them periods. It's a personal choice. Some women like

to have periods when they're younger and others are quite happy not to have them. So it's important to know that there are choices. Yeah, because the periods, well, I'd never call it a periods. They were just, like, was taught. They were so painful because obviously it's pulling away from the lining of your womb. And when I was on the tablet form of HLT, honestly, for the first couple of days, I literally was in so much pain. And the thing is with me, because I've been on HRT for like 26 years now. A lot of the brands that I used to take had been discontinued or there'd be shortages. So I'd sort of chop and change between them all the time and say, I'd just never feel well. Whereas say now what you've put me on, I feel like a completely different person.

Which is great. And have your family presumably have noticed a difference in you as well? Yeah, especially my husband. They used to moan at me in the evenings as well because I'd fall asleep. like loads on the sofa every night and then I'd wake up at like 11 and then couldn't get back to sleep for ages whereas now I don't need that afternoon sort of nap and admittedly insomnia is still a bit of a thing for me but I don't wake up and I'm tired I've been resting while I've been laying there so yes I just think I'm someone that only needs sort of four or five hours sleeping night to be honest well it's the energy isn't it I mean I think also you're making up for lost time because you've got lots you want to do and share and the energy that you have to

have that you sadly haven't had in the past. But it's lovely to hear that other people are contacting you and you're helping them. So tell me about some of the stories that you've heard from other women. Yeah. So I've had sort of ladies messaging me from Mexico, Canada, and they're just literally just saying to me, it's just so nice to hear that they're not alone because that's the thing. I didn't talk about my story for 25 years because I'd say I was a bit embarrassed of myself and like ashamed of myself that I was unable to sort of have a baby. Like it is a big thing. You do go through a stage as if you are a failure.

And that's what happened to me sort of in my mid-20s. All my friends were falling pregnant. And people say, oh, you never know. You might have a baby one day. You hear of all these stories. And it's not like that for me. I don't have any end. I'm not going to have this miracle baby.

And it's nice now to say, tell my story and for other people to be able to relate to me. And I think because I've had so many of the symptoms and that as well, I've sort of things that I've done as my coping mechanisms growing up, I could sort of share those with people and say not everything works for everyone. But if I can share what I've been through, then as long as I can help one person, then that makes me happy, really. Yeah, and I think that's so important, is sharing is so powerful.

You know, there's lots of women who contact me from different countries and they can't always access the same types of HRT, or they don't have access to the same information, but social media and the internet has made things really a lot easier for us to communicate with other people. And I think knowing that people aren't alone, when people have reduced fertility,

that can be very isolating, but then to throw the menopause in as well, it's impossible to know how people feel unless you've gone through it. And I think, like you say, it's all very well for people to say, oh dear, Haley, that's sad, or hopefully things will change,

but actually they're not living your body and feeling what you're feeling, And I think also when you don't have the right hormones, your brain doesn't function properly. So you have anxiety. You have low mood. You have feelings of low self-worth, reduced self-esteem because of your hormones. And then you have those because you can't have a baby. There's so much going on, I'm sure, in your mind.

And you want to get on with your life as well. Yeah. I did go for a stage growing up where I sort of hated my face sort of thing because I just thought, like, I just was so angry with my own body of what it had done to me. But since I've spoken out about my own story, it also helps my mental health more as well with it, because it makes me realise that I'm not alone as well. So knowing that I'm helping others, but they don't realise how much they're actually helping me back.

Yeah, which is so important, actually, because it can be quite exhausting. I know, you know, myself, people want a bit of me or they want some help from me and I have lots of emails, lots of messages. And then I think, actually, who's helping me? No one. And certainly when I was perimenopausal, you're just in this space and you don't know how to get help because you also don't often know you need help

until someone else talks about something and you think, actually, yes, that's me. I'm getting those symptoms or whatever. And it's very hard also for close family members and, you know, like you say, your husband as well, but even for your mother, because you said when you were diagnosed, when you were so young, she was very upset. And now she, I'm sure, feels sad and maybe frustrated

that she couldn't access the right help for you at the time. Yes. As much as she's proud of me that I've come out and spoke about my story. So I think it makes her feel a little bit bad on her behalf, so she didn't really do anything. Well, I think you can never regret what you've done. And actually, what was really good is that she did take you to the doctor and you did see that gynecologist, because even some type of HRT is better than nothing. There's lots of women who are not given any HRT and then they do have osteoporosis or other diseases as a result of not having hormones for a long period of time.

So, you know, your mother totally at the time did the right thing. And certainly all that time ago, there wasn't access to the information that there is now. But it's still a fight. You know, women, whatever age, are still fighting to get hurt, to get taken seriously. the number of people who go back and forth to their doctor is huge, you know, and it should be changed because we have really good evidence, we have good guidelines, especially for women who are young.

And it's very common, you know, one in a hundred women under the age of 40 have an early menopause, one in 1,000 under the age of 30, and about one in 10,000 under the age of 20. So it's uncommon, but it's not rare to have an early menopause as yourself. And I think it's also very hard for other teenagers, other young women to understand, isn't it? Because they're taking the contraceptive, they're not experiencing those symptoms. You don't expect to be at school and have flushes and sweats. No, that's right. And so at the moment, I actually have got like seven friends pregnant at the moment.

So obviously, as much as I'm happy for him, you still always, you always will have that sort of kick in the heart every time a pregnancy announcement is made. You just can't help that. But so, for me, none of my friends, perimenopause, menopause is not in their brains. They're all having their families at the moment. So to have ladies online that I can talk to, such a relief, like, because it is so nice that you finally find people that get you and understand, really. Yeah, I totally get that. And so you mentioned earlier about adoption. Is that something you're going to look at or you're looking at the moment?

Yeah. So we're currently in stage two of the adoption process. So we go to panel sort of, well, we're just waiting on our date. So I reckon it'll be around June. It was in May, but it's been changed due to some training days. But yeah, so hopefully, touch wood, I like to think that this time next year, I could be a mum, really. Yeah, which is amazing because it's a long haul and it's very hard to go through the whole

adoption process, isn't it? Yeah, it is hard. And it's hard as well when you've already been. through what you've been through. And then you sort of have people judging you really if you're suitable to be a mum when it's the thing that you want the most and saying you've had it taken away from you

and now you've sort of got to prove to other people that you are capable. But at the same time, I understand because these children are coming from neglect, trauma and they need to make sure that they're sort of placed with the right family. So you just have to do as you're told really. Well, I think, you know, certainly it has changed and certainly with safeguarding and everything else.

So you can understand, but it's still hard when anyone can try and have a baby without being bettered at all. And then suddenly you've got all this huge process. But certainly a lot of patients I know who have successfully adopted have never looked back. And it's such a rewarding thing to be able to do. And to have the support of your partner as well is it's a very exciting future, hopefully, for you, isn't it? Yeah, because I've been really lucky with him. because he has never pressurised me into IVF or anything. And his mum's actually adopted.

So he's grown up knowing of adoption in his family and how much love a family can have through adoption. So it all just sort of gelled well, really. Amazing. And when you met him, how soon did you tell him about your early menopause? Well, we're in the same group of friends. So he had heard on the grapevine a little bit because you know what people are like.

They do not gossip about others. So he'd heard that I couldn't have children. He just didn't know sort of the ins and out of it all. So it was quite nice that when we got together, I sort of just had to explain why rather than tell him because I did find growing up that in relationships I did push people away because it got to the point where we started to get serious. And then it was, oh, no, I'm going to need to tell them.

So instead I sort of withdrew from them. So with him it was easy. And yeah, he knew sort of from day one really. although he's now learning more and more now, obviously now I'm speaking about menopause, because I'm like, do you remember when I have this symptom? Do you remember when I had that? And he's like, oh, is that another menopause symptom? And I'm like, yeah. So, yeah, he's sort of learning quite a bit about menopause as well now, to be honest. Interesting. So your friends actually did you a favour for him knowing from the outset, because it's a huge thing when you're young

to share with someone, isn't it, who you potentially want to spend the rest of your life with and for them to take on board. And I think certainly I've done a podcast with a partner of one of my patients and we've got a booklet on the website for partners of women to learn about the menopause because it can be very difficult for partners, can't it? When they see, you know, like you say, falling asleep on the sofa in the afternoon or not being mentally as sharp or physically as brightly as perhaps he knew that you could be. I'm feeling quite helpless actually and also not knowing how much is related to just you, how much is related to your hormones. It's very difficult, isn't it?

Yeah, definitely, because brain fog, oh, that was something that was really bad. And so since I've now gotten the right dose of HRT, it's totally lifted. So it'd tell me something. I'll be like, no, I don't remember. What did you say? I can't remember. What was I saying? And I'd just be really sort of, it was really scattered, to be honest,

because I just couldn't remember what he'd said, what I'd said. And whereas now I say, I feel a lot more sharper and on the ball. So you can't get away of anything anymore because I remember. Yeah, but you can see how it breaks up relationships, can you. You can see how it comes between people. And, you know, we see a lot of women who have sadly given up, you know, their partners have left them because they have become so frustrated with them. And actually, it is really hard because you know that it's not you. You know that you should be thinking or remembering or finding the right words in a conversation, but your brain physically can't do it. And we know how important hormones estrogen and also testosterone are with the way our brains work. But it's not. until we don't have them. But even when we don't have them, we don't know because there's so many other things in life that can affect the way our brains work. And so a lot of people find once they take the right dose and type of HRT, they've given it a few months, they often then look back and think, wow, gosh, my brain's a sharpest, has been for a long time. And certainly I feel like that.

I wish I'd started taking HRT probably five or even 10 years before I did. But you don't realize because it's that slippery slope. And I think also for you, you're already on HRT. So why would you think any of these symptoms were really related to your hormones? Yeah, course. And then say even when it comes to dexter scan, so I only actually had my first dexter scan this year. I was never referred for one. But luckily, because we're obviously,

although I weren't on the right dose of HLT, I've been receiving it. So luckily my results come back that my bones are fine. Which is really good. And we know from research, even a low dose of estrogen helps with bones. But certainly the guidelines are that women who are diagnosed with an early menopause should have a dexas scan and it should be done at regular

intervals because osteoporosis is so common, especially in women who have an early menopause. So like I say, it is really good that you received HRT. There's no doubt about it. Your mother did the right thing at the right time and she should never look back and regret. But, you know, you're still young. You've got a whole future ahead of you. And like you say, you're not going to stop taking HRT at a second. No, no. I don't know. I dread to think. what I would be like if I hadn't been on HLT, I'd probably be a shriveled up old prune walking around. Like I just, yeah, for me,

when the people say if you were stuck on a desert island and you could have one thing, what would it be? Mine would definitely be my HLT. Yeah, absolutely. I think we would all say that. And it is just hormones. I think that's the other thing. A lot of people think that it's a drug and it's not.

It is a natural hormone the same way that insulin or thyroxin is a natural hormone that we just replace. So really important. So it's been really kind of you, Haley, to share your story and quite emotional. I feel very emotional listening to it. And it's a big thing I know for you to speak out. But certainly I'm sure this podcast will help a lot of women and the work that you've done and continue to do. We'll really help and resonate with people.

So thank you ever so much. So before I finish, though, I'd really like to just ask for three tips that you could give to younger women who think they might be menopausal and maybe not getting the help that they feel they deserve, what would you say to them? That you know your body, not the doctor. So keep being persistent, even if they're, say, ignoring you, unfortunately, that is the case in a lot of GPs that they do. But say, you know your body, so just keep on. Or if not, then try and see a menopause specialist if you can. And say, find your tribe of ladies because, say, they are out there. and they will help you get through it really. You are not on your own. Absolutely. So really good advice.

Don't do it alone. Keep persuading or being persistent with other doctors and also share with friends as well, I think is really key. Even if they're not going through it, if they're good friends, they can listen and help, aren't they? Yeah, definitely. Brilliant. So thanks ever so much for your time and good luck with the future. I look forward to hearing what the next 12 months brings for you. Thank you. Thanks, Haley. For more information about the perimenopause and menopause, you can go to my website, menopause.com, or you can download our free app called Balance, available through the App Store and Google Play.