Learning disabilities and the menopause
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.
And click here for an easy read booklet on the perimenopause and menopause by balance and Dimensions.
Dr Louise Newson [00:00:09] Hello, I’m Dr Louise Newson and welcome to my podcast. I’m a GP and menopause specialist and I run the Newson Health Menopause and Wellbeing Centre here in Stratford upon Avon. I’m also the founder of The Menopause Charity and the menopause support app, 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.
Sharon Saunders [00:01:18] Yeah. Thank you very much.
Dr Louise Newson [00:01:20] So just if you don’t mind, it’s a very personal question. Do you mind telling me how old you are?
Sharon Saunders [00:01:28] I wouldn’t mind five and three.
Dr Louise Newson [00:01:36] Okay, so you’re 53. So you’re similar to my age, actually so most people in their fifties are menopausal or perimenopausal. So the hormones that we have in our fifties 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 is changing what’s going on. Are you able to describe some of the symptoms that you’ve had Sharon?
Sharon Saunders [00:02:19] I think that’s quite interesting. When I get really hot and sweaty and pain.
Dr Louise Newson [00:02:32] Yes. And you’ve been getting some muscle and joint pains, haven’t you?
Sharon Saunders [00:02:38] Yeah, in my back. And my legs.
Dr Louise Newson [00:02:40] Mm. And have they been troubling you at night-time as well?
Sharon Saunders [00:02:44] Yes.
Sharon Saunders [00:02:46] All over my body.
Dr Louise Newson [00:02:48] 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 the feeling hot?
Sharon Saunders [00:02:58] No.
Dr Louise Newson [00:02:59] So when did you start to think it could be related to your hormones?
Sharon Saunders [00:03:03] Summer.
Dr Louise Newson [00:03:05] So a few months ago. So did someone tell you about the menopause, or how did you find the information?
Sharon Saunders [00:03:12] My mum did.
Dr Louise Newson [00:03:13] Your mum told you about it?
Sharon Saunders [00:03:15] Yeah.
Dr Louise Newson [00:03:16] That’s very good. And what did you think when she told you about it?
Sharon Saunders [00:03:21] I don’t know.
Dr Louise Newson [00:03:24] Were you surprised to know that your hormones go lower when you get older or not?
Sharon Saunders [00:03:31] Yes.
Dr Louise Newson [00:03:32] Yes, Because a lot of us and me as well, didn’t realise 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 joints and not being able to sleep very well. So it can be quite hard to know and sometimes quite scary to know what’s going on can’t it?
Sharon Saunders [00:04:07] Sometimes I just take paracetomol if it’s a nasty headache that will sometimes sort it out. Then as soon as I’ve sorted that out then they will come and check on me and see how I’m feeling or else I can tell them and I can go to them they just can just say ‘Sharon what’s wrong’ and I say I’ve just got a little bit of pain in my forehead. That’s very hurtful and sometimes I can’t feel it. Sometimes if I get all pains all over, sometimes it is like that with everything I have so when I’ve done that. Then I’ll come in here and just lay on my bed and have some sleep. Now if I have the stronger parecetomol, the big white ones, because you can get the stronger ones and they help you even better.
Dr Louise Newson [00:05:29] So that helps you with the pain if you take stronger painkillers.
Sharon Saunders [00:05:33] Yeah, when you got pains all over, because it makes me feel pain, then. In the morning when I wake up I have pains in my back and everything else. So one of the staff have to explain a bit clearer because sometimes, I don’t like being in that sort of pain. So it’s different like that isn’t it, and it it’s different for other people because I’m in a wheelchair but that’s why somebody comes in to help me up.
Dr Louise Newson [00:06:13] Yeah.
Sharon Saunders [00:06:15] And then the second bit is, if you have like the warm hot water bottle you think that’s a good idea to use a hot water bottle?
Dr Louise Newson [00:06:27] Sometimes people find using a hot water bottle can help. One of the things is, 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 realise that and actually it’s better to think about having the hormones back than taking lots of lots of painkillers, which certainly the strong ones can sometimes cause side effects as well. But I know you had spoken or you 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?
Sharon Saunders [00:07:13] Yes.
Dr Louise Newson [00:07:14] So what had you been told about HRT before we met.
Sharon Saunders [00:07:18] A little bit, but I didn’t…now you have explained it at the start because I was finding it a bit complicated, but now I’m really confident but until we sort it, then I know what I’m doing because it’s a new thing for me.
Dr Louise Newson [00:07:43] 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 it’s 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.
Sharon Saunders [00:08:27] I wasn’t comfortable now.
Dr Louise Newson [00:08:29] 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 that can be really difficult to understand.
Sharon Saunders [00:09:17] Yeah.
Dr Louise Newson [00:09:18] 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 thirties and forties you could understand more, so you’d know what to expect. Do you think that would be a good idea?
Sharon Saunders [00:09:35] I think it’s a good idea.
Dr Louise Newson [00:09:38] 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?
Sharon Saunders [00:10:21] Yeah.
Dr Louise Newson [00:10:21] 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.
Dr Louise Newson [00:10:40] 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.
Sharon Saunders [00:10:53] Yeah, like it’s important with other people as well. So you can explain to them because they would like to know about it as it makes me feel like I’m coming out of my shell.
Dr Louise Newson [00:11:15] Yes. Yeah. Because actually, the more we talk, the better it is, isn’t it, as well.
Sharon Saunders [00:11:22] But then I don’t have to get wound up or anxious just say it how you think it works.
Dr Louise Newson [00:11:32] 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 pain, 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?
Sharon Saunders [00:12:29] Yeah, because sometimes in the mornings when I wake up, I always lay on my tummy for 5 minutes or more, just stretch my legs out at the back as that does help. Friends can help me.
Dr Louise Newson [00:12:52] 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? So you have obviously we’ve spoken before and you’re going to start taking some HRT.
Sharon Saunders [00:13:43] Yeah.
Dr Louise Newson [00:13:44] Which you’re quite excited about, aren’t you? 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?
Sharon Saunders [00:13:55] Yeah.
Dr Louise Newson [00:13:56] 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?
Sharon Saunders [00:14:24] Yeah.
Dr Louise Newson [00:14:25] And you’ve got support of your carers and people around you as well is also really important, isn’t it?
Sharon Saunders [00:14:32] Yeah.
Dr Louise Newson [00:14:33] And I think you’re very lucky with the carers that you have and to see the relationship you have is really special isn’t it.
Sharon Saunders [00:14:41] Really.
Tatjana [Sharon’s carer] [00:14:41] And she is one special lady.
Sharon Saunders [00:14:45] Oh always, always special.
Dr Louise Newson [00:14:48] But some people aren’t so lucky are they. Some people with learning disabilities don’t have. Yeah, I know you are.
Tatjana [00:14:55] That’s why, that’s why you want to help others too.
Sharon Saunders [00:14:59] Yes, so I can help other people too.
Dr Louise Newson [00:15:03] Yes. And that’s really important. So I would really like to ask from you, Sharon, three things that you think other people with learning disability 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?
Sharon Saunders [00:15:24] Ask for help.
Dr Louise Newson [00:15:25] Ask for help. That is a really important thing, isn’t it? And if people don’t get help from the first person they ask, then it’s probably worth asking someone else as well, isn’t it?
Sharon Saunders [00:15:40] Yes and the other people that speak up.
Dr Louise Newson [00:15:43] Yes. Because you’re not shy of speaking up, are you? But others might be might they.
Sharon Saunders [00:15:50] Yeah but I can explain to them and help them and ask.
Dr Louise Newson [00:15:56] 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?
Sharon Saunders [00:16:18] Yeah.
Dr Louise Newson [00:16:19] That’s very great. I love for those people who obviously, you can’t see Sharon talking, but signing as well. And then putting your fist from up to down is a very definite yes, isn’t it?
Sharon Saunders [00:16:31] Yes. And I feel a lot of confidence about what we are doing then it helps me to understand more.
Dr Louise Newson [00:16:43] 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 behaviours 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 is really crucial.
Sharon Saunders [00:17:13] Speak up.
Dr Louise Newson [00:17:14] Speak up. Yeah. So before I finish, Sharon, is there anything else you’d like to say to the people that are listening?
Sharon Saunders [00:17:22] Don’t give up.
Dr Louise Newson [00:17:24] Very good. Very wise words. Don’t give up. And I think that should be for everybody. Actually really important that we don’t give up and we use our voice and our determination too.
Sharon Saunders [00:17:37] We need more voices.
Dr Louise Newson [00:17:40] 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 Saunders [00:17:47] Thank you, see you soon.
Dr Louise Newson [00:17:53] For more information about the perimenopause and menopause, please visit my web site. Balance-menopause.com, or you can download the free balance app, which is available to download from the App Store or from Google Play.