The Dr Louise Newson Podcast - 209 - Learning disabilities and the menopause

Episode Date: June 20, 2023

On this week’s episode of the Dr Louise Newson podcast, Dr Louise welcomes Sharon Saunders. Sharon is a menopausal woman with learning disabilities and is a wheelchair user. During the episode, Sharon talks about when she first learned about the menopause from her mum, and her menopause symptoms, including joint aches and pains and headaches. She describes how these symptoms make her feel and the impact on her daily life, and Dr Louise and Sharon also talk about treatment options. Finally, Sharon offers some important advice to other women with learning disabilities who are going through the perimenopause and menopause: speak up about how you are feeling, and don’t give up. Sharon is supported by Dimensions, a not-for-profit organisations supporting people with learning disabilities, autism, behaviours of distress and those with complex health needs. Click here for more information more about Dimension or on Twitter @DimensionsUK. And click here for an easy read booklet on the perimenopause and menopause by balance and Dimensions.

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. Today on my podcast, I'm really excited and very privileged actually to have with me a very inspirational, wonderful person called Sharon, who I've recently met. Sharon has learning

disabilities, but she's incredibly clever and very kind and very cunning as well. She knows exactly what she wants. and she really wants to be in control of things, which is absolutely the right way to be. So welcome, Sharon. It's really good to see you and to be able to talk to you today. Yeah, thank you very much. So just if you don't mind, it's a very personal question. Do you mind telling me how old you are?

No, I don't mind. Five and three. 53? Yeah. Okay, so you're 53. so you're similar to my age, actually. And so most people in their 50s are menopausal or perimenopausal. So the hormones that we have in our 50s are not the same as the hormones that we have when we're younger.

And I know that you know about the menopause and you're learning about the menopause. And like lots of people, you didn't really know so much about it before. and you have been experiencing some symptoms, haven't you, which have been affecting you, and it can be quite hard to know when your body's changing what's going on. Are you able to describe some of the symptoms that you've had, Sharon? I think that's quite interesting. When I get really hot and sweat.

Hmm. And pain. Yes. And you've been getting some muscle and joint, pains, haven't you? Yeah. In my back and on my legs. And have they been troubling you at night time as well? Yes. Yes. All over my body. And that's really difficult, isn't it, when you're in pain and you're not sure what's happening. Did you know what was causing the pains at all, or this feeling hot? No. So when did you start to think it could be related to your hormones?

Summer. So a few months ago. So did someone tell you about the menopause or how did you find the information? My mum did. Your mum told you about it? Yeah. Well, that's very good. And what did you think when she told you about it?

I don't know. Were you surprised to know that your hormones go lower when you get older or not? Yes. Yes, because a lot of us and me as well didn't realize the effect of hormones in our bodies and sometimes it's not until they're low when we start to get symptoms that you think, oh, right, that might be related to my hormones. And a lot of people, when we think about hormones, we think about maybe if we're having periods, but we don't think about our muscles and our joints and not being able to sleep very well.

No. So it can be quite hard to know, and sometimes quite scary to know what's going on, can't it? Sometimes I'll just take pay a second off. If it's a nasty headache, that sometimes they can help me to sort it out. Hmm. Then soon when they've sorted that out, then they come and check on me and see how I'm feeling, or else I could tell them. if I can go to that

they could just say Cheryl was full and I'd say I just got a little bit of pain in my forehead very hurtful and sometimes I can't feed it

right there's the portable staff sometimes if I get all pains all over like that's That's everything else. So when I've done that, then I'll come in there and just lay on one better to have them shrimp sleep.

And if I have like the stronger pair of seconds, the big white ones, they love the kind of ones, because you can get the strong ones because they're stronger, and it helps you, even better. So it helps you with the pain if you take stronger pain killers. Yeah. Yeah, when you've got pains all over, because it makes me feel paining. In the morning when I wake up,

I've got pains in my back and everything have. So the one of the staff had to explain it a bit clearer because sometimes, because I don't like being lost all the time. So it's different like that, and it's different for other people. Because I'm in the wheelchair. But that's why somebody comes in to help me up. Yeah.

And the second bit is, if you have like the warm, hot water bottle, do you think that's a good idea to use a hot water bottle? Sometimes people find using a hot water bottle can help. One of the things, as you know and people listening, know that our hormones work all over our body and they can actually help reduce any pain and inflammation in the muscles and the joints. And so actually, muscle and joint pain everywhere

is a very common symptom of having low hormones. And a lot of people don't realize that. And actually, it's better to think about having the hormones back than taking lots of lots of painkillers, which suddenly the strong ones can sometimes cause side effects as well. But I know you had spoken or you'd thought about HRT before, hadn't you, but you weren't sure whether you could take it because you're in a wheelchair. Is that right?

Yes. So what had you been told about HRT before we met? A little bit, but I didn't, because now is, explain with it and understand because I'm finally now I'm really confident because it till we start, here we sort it, then I know what I'm doing because it's a new thing for me. Yes, and it is really important when you start any treatment, you have a full understanding of what it is and what it can do and to be in control. And I've spoken to quite a few people in the past who have been told that they can't take HRT because there's a risk maybe of clot.

And if you're in a wheelchair and you're not walking, then that can increase your risk. Whereas actually the types of HRT we usually prescribe doesn't have an increased risk of clot and is very safe. And a lot of people in wheelchairs find that their muscles and joints can be bad, but also sometimes sitting down for periods of time. can actually be quite uncomfortable if you've got some vaginal dryness. I are quite it comfortable now. Yes, or some urinary symptoms as well. Some people are more likely to have urinary tract infections and having hormones can really make a difference with that as well.

So it's really important, I feel, for my work, is to try and give information to everybody in the way that they understand it. And actually, we're doing a huge piece of work for people with learning difficulties so they can understand because I know sometimes when we speak, you use sign language. And we're doing some work with people who can sign as well, because that's a really important way. We're actually using more pictures and trying to make the language really simple. Because I know as a doctor, we often use quite complicated language.

And that can be really difficult, can't it, to understand. Yeah. So what we want to do is to allow people to, have the understanding before they become menopausal so that when you were in your 30s and 40s, you could understand more so you'd know what to expect. Do you think that would be a good idea? I think it's a good idea.

Yes. So doing this podcast is actually really useful for other people to think because for many years, we've not been told much about the menopause, or we've always been thinking it won't happen to me because I'm not the right age or I've got different symptoms or I'm experiencing symptoms but I don't know who to ask. So I think having it so that you can ask and you know you're someone that wants to know about what's going on

which is really important but you need to be given it in a way that you can understand so then you can make decisions about what to do. Don't you think that's right? Yeah. Whereas a lot of people are just told, well, you just have the symptoms put up with them, you can't do anything about it. And I feel that's really sad.

I think it's more important. Just say what you, how you feel for yourself. Yes. And it's also really important for people that care for you. I know you've got some fantastic carers. you've got one sitting next to you now, but it's really important that they understand as well. So when you're feeling different...

Yeah, like to sample with other people as well. So you can explain to them because they would like to know about it and it makes me feel out of the shell. Yes. Yeah, because actually the more we talk, the better it is, isn't it, as well? Yeah, then I don't have to get well-doubtful answers, just say it how you think it works. Yes, and I think that's so important that you can talk about it, and people understand as well,

because I've worked with some people with learning difficulties who can't speak, and then their behaviour gets worse because they're menopausal, because they don't understand that they're in pain or they're getting other symptoms and they can't express it. So actually then if a carer understands that what else is going on in this person, could it be related to their hormones, then that's really important for them to pick up because you know some people, we've spoken about it before,

have flushes and sweats, some people have pains, some people feel very, very anxious or very low in their mood, but they can't express why they're feeling like that. And so to have the ability for others around to understand means that those people suffering are more likely to get the right help, aren't they? Yeah, because sometimes when I'm in the mornings when I wake up, I always lay on my tummy for five minutes or more, just shuts my legs out at the back

and that does help. Friends can help me. And that's really important with this conversation. A lot of my work is trying to help people who haven't got the help or support or they haven't got the knowledge. And through balance the app, we're doing a lot of work in translation,

so people that speak in different languages can understand. but also people that have different accessibility needs. So people who can't hear, who can't read properly, who need things explained in different ways. That's something that we're working on really carefully. So everybody has the ability to understand because as women, we're all going to become menopausal and it will affect us in different ways.

But it's important that we know so then we can get the treatment that we want, can't we? Yeah. So you have, obviously, we've spoken before, for and you're going to start taking some HRT, which you're quite excited about, aren't you? Yeah. And what's really important is that you are in control, because you like being in control of everything that you do, don't you?

Yeah. And I know when we spoke, it's also important for you to know that with HRT, you're the one that's going to be putting the patches on, and you can decide whether you continue or not. but it's really important to try so that you can decide whether it's helping you or not. And I feel very strongly as a doctor, I'm not forcing you to do something. You're doing it to try and see if it helps, which is really important, isn't it? Yeah. And you've got support of your carers and people around you as well.

It's also really important, isn't it? Yeah. And I think you're very lucky with the carers that you have. Yeah. To see the relationship you have is really special, isn't it? Really interesting. She's the one very special lady. Always, always special.

But some people aren't so lucky, are they? Some people with learning disabilities don't have. I know you are. That's why you want to help others, do you? Yes, so I can help other people too. Yes, and that's really important. So I'd really like to ask you. from you, Sharon, three things that you think other people with learning disabilities should

do if they're struggling and think they might be menopausal. What things do you think would be really helpful for them to do? Ask for help. Ask for help. That is a really important thing, isn't it? Yes. And if people don't get help from the first person they ask, then it's probably worse asking someone else as well, isn't it? Yeah, other people that speak up. Yes, because you're not shy of speaking up, are you? No. But others might be, mightn't they?

Yeah, but I can explain to them and help them and ask. Yes, so I think that's really important. So three things really is asking for help. The second thing would be, if you're not getting the help, then you should ask someone else. And the third thing is asking for someone to explain so that you completely understand. Would you agree with that, Sharon? Yes. That's very great.

I love, for those of people, obviously, who can't see Sharon talking, but signing as well. And putting her fist from up to down is a very definite yes, isn't it? Yes. And I feel not confidence about what we're doing. Yeah. It has to understand more. Yeah. Absolutely.

And I'm really grateful for you talking because I know it's hard doing this podcast and speaking to me, but I know it's going to help other people to think. So we're not ignoring people. If people work with people with learning difficulties and their behaviour is changing or you feel that things aren't quite right,

then it's always worth thinking about hormones and trying to allow that person to be able to explain and to try and get the help that they need is really crucial. Speak up. Speak up, yes. So before I finish, Sharon, is there anything else you'd like to say to the people that are listening?

Don't give up. Very good. Very wise words. Don't give up. And I think that should be for everybody, actually. Yeah. Really important, but we don't give up and we use our voice and our determination to be. And we need more voices.

Indeed. So it's lovely having your voice today. I feel very privileged and happy that we've spent this time together. So thank you ever so much, Sharon. Thank you. See you soon. For more information about the perimenopause and menopause, please visit my website, balance, 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.