Managing menopause while living with physical disabilities

Laura Bibby joins Dr Louise to share her experience of managing the perimenopause shortly after a life-changing spinal cord injury.

A senior nurse and an ambulatory wheelchair user, Laura shares her struggles to have urinary symptoms, crippling anxiety and joint pain recognised as being due to her perimenopause, and not just attributed to her injury.

In an empowering conversation, Laura and Dr Louise discuss the importance of persistence, and speaking out to help women with disabilities overcome barriers preventing them getting the menopause care and treatment they deserve.

Laura’s three tips: 

1. Be persistent – If something doesn’t feel right with your health, keep pushing and seeking for the right treatment. Even if a healthcare professional dismisses your request, keep going and explore other options
2. Speak up and don’t feel ashamed. Menopause affects everyone
3. Normalise conversations around women’s health, don’t have them in secret. Discuss periods and the menopause openly so that it is easier to go and ask for help when needed

Follow Laura on Instagram @blue__brick_disability and you can read more about her story in this article on the balance website.

Transcript

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 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 the podcast I’ve got someone called Laura with me remotely. Someone, like a lot of my guests, I’ve never met in real life. One day I’m going to have a podcast party and meet all the guests. So Laura was a nurse and reached out to me, like a lot of people, on social media. Her story resonated with me and I’m sure it will resonate to many of you listening, and she’s agreed to come and talk about it and her, and the events that have led on since various things have happened. So welcome, Laura today. Thanks ever so much.

Laura Bibby: [00:01:15] Thank you for inviting me.

Dr Louise Newson: [00:01:17] So you’re a nurse. I’m a doctor. If I’d met you straight after your training and asked you about menopause, how much would you have been able to answer?

Laura Bibby: [00:01:25] I would have looked at you blankly and not been able to answer at all. I’ve had no medical training at all, it just wasn’t something that was on the radar. I’m actually an advanced nurse practitioner, so I’ve done advanced nursing skills at masters level, I’m a prescriber, and no one has ever, ever talked to me about menopause.

Dr Louise Newson: [00:01:46] It’s sad, isn’t it? I mean, if you could go back in time, do you think it would have been useful knowing about the menopause?

Laura Bibby: [00:01:52] Oh, absolutely. My background is A&E, so I spent ten years working in A&E where, I’m sure looking back now, there were patients that would have come in, whether they presented with a mental health problem or a gynae problem. But that disconnect, it just would have been completely off radar. And why would you present in A&E with a menopausal problem? However, now, knowing the symptoms and knowing how desperate I’ve got, I can understand why someone would rock up.

Dr Louise Newson: [00:02:19] Yeah. And in fact, a patient this morning told me that she had gone to A&E and in fact, it was with crippling anxiety. She had a panic attack and she’s not a panicky person at all, really level headed. And she’s 54. Her periods had stopped and she didn’t really know what was going on at all. Went to A&E and they said, oh, I think it’s your menopause, so that’s really good. But then they said, well, you just need to go home because nothing we can do for you. And she said, well, I wouldn’t expect A&E to really help. And I thought what a missed opportunity, actually, because even if they felt they couldn’t prescribe, they should still give information. And certainly, this lady wanted HRT. So if she had more information and wanted it, then I really feel that she should be offered a prescription because we give prescriptions in A&E for all sorts of things, don’t we? If we diagnosed an underactive thyroid gland, we would give thyroxine. So, there’s lots of missed opportunities where women are being neglected, really, I can’t think of another word for it, but I spend a lot of my time obviously thinking about the menopause, but I spend lots of time thinking about women who are really underserved when it comes to the menopause. And I think most women are actually. I’m a fit, well-educated woman, and I still struggle to get the HRT and the treatment and the holistic care that I should have from the NHS. But I think about those women who have various reasons why they can’t or they either can’t get the treatment that they want or they don’t realise that they need treatment or sometimes it’s a combination of those things. And we’ve done various work with various charities looking at minority groups. I’ve just done a podcast which has come out for people with learning disabilities, which is really important. But doing that work made me think more about physical disabilities as well because it’s hard enough when you’re able bodied and physically well to cope often with a menopause. But when people have physical disabilities, everything can be amplified and so much worse. So I’m leading in, obviously, to ask you about what’s your sort of story before the menopause, if you don’t mind explaining what happened to you, Laura.

Laura Bibby: [00:04:32] Yeah, absolutely. So prior to my menopause, I’ve always been very into health and fitness, looking after my body. I used to run 40-50K a week. Yoga I would practice a couple of times a week, my practice would be in the morning before starting work. So really active, looked after my body, looked after what I ate to make sure that I was healthy. I had a sports massage back in 2019 where unfortunately a freak incident happened where the therapist put their lower weight through the lower spine and actually broke my back and the fragments of the bone embedded into my spinal cord and caused me to have something called cauda equina syndrome, which resulted in me being completely paralysed and I needed to have spinal surgery to repair the damage, removed fragments of bone and to get me back walking. Unfortunately, with cauda equina syndrome, when the nerve is touched you can cause permanent damage, which happened because of the fragments of the bone, but also when the surgeons went in to remove it there’s also risk of the spinal cord being damaged. I was left with left-sided paralysis to my left leg. And also urinary problems associated with an L3/L4 spinal cord injury. I was discharged, I was told that, you know, my GP said you may never walk again and kind of, off you go kind of thing.

So I had intensive therapy, I was given morphine, I was given gabapentin, I was given a cocktail of drugs to help with my pain. And as a prescriber myself, I wasn’t comfortable taking gabapentin, so I didn’t take it. I struggled for probably about eight months before I was seen in the pain clinic. When I went to the pain clinic, I was offered a Butran slow release patch for pain relief, which I’m still on now, diazepam and paracetamol. So I’m still on a strong cocktail of pain relief. So that was at the beginning of my journey with a spinal cord injury. You have urinary problems, so you have retention. The signals that fire my bladder don’t always work properly, so I’m not always aware when I need to go to the toilet. So I’m at huge risk of getting a UTI and I kind of really have to work that area to make sure that I look after my bladder and drink plenty of fluids and bits and pieces. So, there is a bit of a disconnect with those neurones that fire the bladder.

I’ve got pain from spinal cord injury, I’ve had major surgery and you’re told it can take up to two, three years for that all to settle down. So COVID hit and I just carried on doing my rehab, taking my medication. And it wasn’t until sort of probably about 18 months ago, I suddenly just become completely overwhelmed with anxiety like crippling anxiety going on the school run and being too anxious to get out of the car, being nervous going into shops, talking to people, making decisions, just a complete lack of confidence which didn’t fit comfortable with me. I kind of held it together and it got to the point where I think over the Easter period, I just physically couldn’t leave the house. I just couldn’t stop crying. Anybody who knows me knows that I am not someone who cries. I’m not a crier. I’m a resilient person. I think working in A&E for ten years, you have to be resilient. And if I cry, I probably cry two or three times a year. So for me to be uncontrollably crying just wasn’t me. So I went off to the doctors and explained how I was feeling, and they said, oh, you’ve got depression. And I didn’t fit comfortable with me. I said, this isn’t me, I’m so resilient. I don’t understand why suddenly two-and-a-half years later after having my accident, where I’m so positive about it, some really positive things have come out of me needing to use a wheelchair and use mobility aids. I don’t feel that that’s why I’m feeling like I’m feeling. The pain was still increasing. I’d kind of reached a plateau and I was beginning to wonder whether I’d just become resistant to the medication I was on and did I need to increase the morphine? Was that why I was in so much agony? My hips were just on fire. I would be lying in bed gyrating my hips, I would wake up gyrating my hips to try and alleviate the pain. I couldn’t lay on either side. It was impacting on my walking, on my rehab and my therapy because the pain had just got to a level that was actually reducing me to tears and the brain fog that I was then starting to experience coincided with COVID and everyone’s talking that COVID causes brain fog.

So I had all these things going on, which was making me feel even more anxious and depressed. I’ve got a quite stressful job working as a senior manager in the NHS, having to make decisions, having to have team calls and suddenly the words just weren’t coming out of my mouth, which really knocked my confidence. I kind of felt a bit withdrawn and didn’t want to verbally speak out in meetings for fear that the words would come out wrong. I was beginning to wonder whether I had dementia. I had recently read the book, Still Alice. I don’t know whether you’ve read the book, and I think anyone who’s read the book, Still Alice, will absolutely, these feelings will resonate with them. And actually in the book, Still Alice, she talks about menopause and she thinks maybe her dementia is menopause. She was 50. I was coming up 45. And then there was lots of hype on social media that made me think, hang on a minute, is this menopause or, you know, have I got dementia, Have I got, you know, long COVID? Have I just got chronic pain because of my spinal cord injury? So all these factors are going on. So I went back to my doctor and suggested that I’d like to discuss taking HRT, and they just said, no, no, you’re too young, you don’t need HRT. It was suggested, this was a telephone consultation with a locum GP, it was suggested to help with my low mood that I took up some form of exercise and I said what maybe like something like running? And they said, oh, that would be a fantastic idea. And I just was gobsmacked that my GP, who clearly hadn’t read my notes, had no understanding that I was an ambulatory wheelchair user, that running wasn’t an option. I couldn’t run. I’m in a wheelchair. It was suggested that I take up some form of exercise because it would help with my low mood. So I decided there was no point pursuing the conversation with this person, that I had to go to my research, which is what I did. So I’m eternally grateful for the work that you’ve done raising the profile and, you know, giving people like myself and actually friends and colleagues that the information that we are being deprived from. So I did my research and I then remembered that I had health insurance, so I went to my private health insurance and I was told, nope, sorry, menopause is the ageing process and you’re not covered.

Dr Louise Newson: [00:11:53] That’s right. You’re not covered. Yeah.

Laura Bibby: [00:11:56] Which I was gobsmacked because, you know, the whole point of having health insurance is to help you with conditions. So they weren’t interested, but they did give me a consultation to talk to a GP, and this GP was amazing. She absolutely understood the menopause clearly had had training and she just boosted me and went, right, Laura, this is what you need. You know, you’re a clinician, you know what you need to do and this is the information. So she just laid it out for me. She gave me some apps, some support apps that I could use via my health insurance. And I went back to my GP and I had a list in front of me so that I wasn’t going to, you know, get starstruck and become, you know, brain fog and not ask those questions. So I listed exactly what I wanted and reluctantly my GP said, well, we need to take bloods from you, even though I’m over 45, and then we would discuss it. So I went back after my bloods and they said, no, your bloods were normal. It’s not indicating that you’re perimenopausal. And I said, well, despite that I would still like to have some treatment, so I am on some low dose HR. I don’t believe I’m on the right dose. I don’t believe it’s tackling everything. So I do need to go back and address that, I’m early on my journey. It was that lightbulb moment when I suddenly I went, it’s not because I’ve got a spinal cord injury. This is perimenopausal and I’m kicking myself that I didn’t, I wasn’t more proactive. And I sat with it for so long. And I think you picked up on one of my social media posts I did, where I linked all the symptoms of spinal cord injuries and menopause. And they’re actually the same. So, yeah, it’s about understanding that menopause is complicated and there are so many symptoms. But don’t be fobbed off because it’s very easy for someone to say, well, if you’re depressed, then you’ve got a mental health problem and if you’ve got a UTI…

Dr Louise Newson: [00:13:58] Yeah. And I think that is part of the problem. And sometimes I go to meetings and they say, well, we wouldn’t want to put every palpitation, for example, due to the menopause because some people have palpitations due to heart problems. And I completely understand that. And it’s really easy to shoehorn women and patients sometimes into a box thinking it’s that’s all related. And I think, for example, the urinary symptoms that you describe can be very common when people have spinal injuries, and urinary symptoms can be very common during the perimenopause and menopause. But actually the two can coincide together. And sometimes what’s happened in medicine and I think it’s been a real problem and it is a real problem for women, is that we compartmentalise medicine and we try and tick too many boxes and then we don’t think about other things that can be happening at the same time. And lots of people can have two things together. So when I see someone who, for example, has muscle pain or joint pains, of course they might have an arthritis. And some people I see have already been diagnosed with an arthritis, but some of their pain could be related to their low hormones as well. And, you know, I see a lot of patients and women who have multiple sclerosis, MS, and that often gets worse during the perimenopause or menopause, and they’re often given other biological agents and drugs, but they’re also menopausal. So I will give them HRT if they want it, of course, to help their future health, knowing that some of their symptoms might be not related at all, but knowing there’s no contraindications to taking HRT and the number of women that come back when they’re on the right dose and type of HRT with MS saying my goodness me, I don’t need to take this extra biological agent. Actually, the deterioration in my symptoms were due to my hormones and we know that estrogen and testosterone are very important on nerve function as well. And testosterone can build the myelin sheath and reduce inflammation and work as a neurotransmitter. So it can be very helpful actually in repairing any nerve damage, but also, you know, nerve pathology.

So it’s really crucially important that we don’t just ignore women because they’ve got other physical, mental, psychological disorders, if you like, as well. And I think when you think about urinary symptoms, vaginal dryness, I often think about people who are sitting in wheelchairs because we know around 80% of women have symptoms related to vaginal dryness, urinary symptoms – about 8% have treatment. So the majority of women aren’t getting help. A lot of women I speak to find it hard sitting down for long periods of time or they find that they’re going to the toilet far more frequently. And actually, if you have to sit down because you’re in a wheelchair for a lot longer, it must be very uncomfortable. And plus, just the effort of going to the toilet for a lot of people is a huge effort. You know, we take our health for granted, as you know, and our mobility for granted when we are mobile. But actually it’s not so easy for a lot of people and people who are very physically disabled who need a hoist and they need carers and or they’ve got incontinence pads, they don’t want to be leaking and urinating when they don’t need to. And without anyone thinking about, well could some local estrogen, vaginal estrogen, help some of the urinary symptoms? Might not help them all, but even if they’re 20% better, for a lot of people that’s really going to improve their quality of life.

Laura Bibby: [00:17:29] Absolutely.

Dr Louise Newson: [00:17:29] And like you say, looking at the systemic side of things as well, because, you know, you’ve been given all sorts of drugs and actually they can have an effect. But if we can replace some of those drugs with some hormones that have less side effects and better long-term effects on future health, then I would much prefer to swap estrogen with gabapentin, for example. And that’s what happens quite a lot. You know, we see a lot of people who are being medicalised for the wrong reasons for their individual symptoms rather than someone taking a step back and thinking, could this be related to their menopause? There’s a lot of people who think it’s awful that people take HRT and that we’re medicalising the menopause, but it’s been medicalised already with other medications. So in medicine, it’s so much better if we can treat the underlying cause, and it’s just not happening with the menopause, is it?

Laura Bibby: [00:18:21] No, it isn’t. We know that, you know, the highest suicide rate in women is if their aged 45 to 55. That’s a huge stat. And when we can treat it with medication, if someone had diabetes, we just wouldn’t question it, we would give them insulin to support them. But there is just that taboo around the whole subject. 

Dr Louise Newson: [00:18:42] And have you spoken to other people at all, Laura, who’ve been, who have physical disabilities, who are struggling with the menopause or is it a conversation that’s coming out more, do you think, in general?

Laura Bibby: [00:18:53] Absolutely. So I’ve done a few social media posts on my disability platform and I was really taken aback by the amount of people that privately reached out to me and said, thank you, I’ve now had that lightbulb moment as well, thanks to your posts. So that was really sort of inspiring to know that actually I wasn’t alone going through disability and menopause. That actually, I think we have to talk about it. The more we talk about it, the more we empower people. You know, I’m confident and I’m quite happy to come somewhere like this and talk about some of those subjects like urinary infections and vaginal dryness and stuff where so many people wouldn’t. But unless we speak up about it and actually by you talking about treatment that will help that, that will empower someone to go, no I’m not just going to accept this and I am going to go and get treatment. So talking on my platform, people have reached out to me. I’ve had a couple of people have said, oh, you’ve just given me the kick that I need to go back and be a little bit more sort of forceful about what it is I need, And interestingly when you first reached out to me, I was out with a schoolfriend and we were having lunch. We were just paying and I said, I need to hurry. I’ve got a phone call with someone from Louise’s team, and we start talking about the menopause. And the lady that was serving us said, oh, I’m so sorry to interrupt your conversation. She said, but I’ve been listening to you while you’ve been queuing. She said, I think I’m going through the same. What you’re talking about is exactly what I think I’m going through. She said, everyone’s put it down to the fact that I’m going through a divorce, and she says, but I’ve now moved on from my divorce and the symptoms are still there. She says, thank you for talking so openly. And I said, I didn’t realise we were being so loud, but there you go. So I think having these conversations inspires other people to go, actually, I’m not going to settle for second best, I’m not just going to accept this. It isn’t as – when I went to my private health insurance to ask for support – it’s not an ageing process that we just have to suck up. Let’s get that help.

Dr Louise Newson: [00:20:57] Yeah, absolutely. And it’s been really amazing actually watching and listening to how people help each other. I think I’m very fortunate that I’m doing something that affects women rather than men because I know how hard it is. I’ve got some male colleagues who work with testosterone replacement in people who have testosterone deficiency. It can affect around a third of men, but it’s a really closed conversation. And men don’t like talking about their own health or hormones. We know that just looking at how people present with disease and men and women are different, but women like to talk, but they also really like to help each other. I’m not saying men don’t want to help each other, but there is this sort of almost sisterhood that’s going on, and I can feel it even more with lower generations. So I did a survey recently looking about how we talk about the menopause, and I presented it at a European conference and people are far more likely to talk to their daughters than they are to their mothers about the menopause, which is no surprise. But actually then daughters and younger people get so much more empowered and then can help and start that conversation. And it’s not even about normalising the conversation. It’s about allowing people to think about what they’re going to do about it. Because I think for so long people haven’t been talking because they thought there was no treatment. I might as well just carry on. What’s the point of moaning? But now I feel like the nation is waking up, people are understanding their body, they’re allowing to understand. But actually then the next step is how? How do I get treatment? And like you say, it’s helping people to support that. And I know a lot of the pushback I get from my, some of my fellow healthcare professionals, is because I’m creating work for them, because all these women are now coming to the surgery. And I, I understand and I feel that’s difficult on a flooded system. But actually, at the same time, I feel, isn’t that great that we can improve the future health of women and women can understand what’s going on and women are allowed to have a choice. And the number of people that I see once they’re on the right treatment that’s right for them, they’re not needing to go back to a doctor to complain about their pains or their headaches or their poor sleep or their low mood or their urinary symptoms. So it won’t take long for the future health improvements to really kick in, which will not only save time, but also save money and help people to lead better lives.

But this work that goes on behind the scenes, you know, in coffee shops, on social media with DMs, you know, there’s all this that’s going on which we can’t monitor, we can’t assess by fancy research with big trials. But I feel it is having such an effect. And I couldn’t have done this work 30 years ago without social media. I mean, there’s a lot of Twitter I can’t stand because it’s very toxic often. But on Instagram, it’s almost like people really want to help and we can help people that we don’t know, but in a very positive way, in an empowering way. And just when I first came across you on Instagram and you could feel this this energy, this sort of support for you when we don’t know you, which I think I can’t imagine what it must have been like and still is like for you having such a freak accident. But none of us need social media friends. But just to have support actually is really useful, isn’t it?

Laura Bibby: [00:24:22] Yeah, absolutely. And it’s kind of the talking out and reaching out. And actually now I’ve got some people on my Instagram account, who I’ve never met most of them, but actually every now and then, I actually came off social media for about three months last year and it was because I just couldn’t, everything was just too overwhelming for me. I had incredible insomnia and just that anxiety that I completely came off of social media. And when I went back on, I was inundated with messages from people that had noticed, had noticed I hadn’t been on and were checking up, are you okay? We wondered whether your health had deteriorated or, you know, just a friendly kind of message. And it really boosted me. And I then decided that, yes, I was going to come back onto social media because it is a good platform. And if one post could inspire someone to go to their GP to get help, whether it be for a mental health problem or for a menopause problem or for a long-term chronic problem, if that one person inspired somebody, then actually it’s worth doing it.

Dr Louise Newson: [00:25:25] Absolutely. I think, yeah, please don’t stop, because I, we, all sometimes get quite inward looking and think, woe is me. And then you look at other people who are more inspirational saying, no, come on, stop complaining, let’s just get on. And I think it’s wonderful watching what you’re doing and listening to your inner strength, because your inner strength is definitely there, even when you have wobbles. So I’m really grateful for your time. Well, I’d really like to finish with Laura, actually, is I always do three take home tips, as you know, the three things that you have learnt as somebody who does have a physical disability that have made a really big difference to try and get the treatment. And I know you’re saying it’s not quite optimal yet, but just starting on that treatment journey, what three things have you found that have been really useful?

Laura Bibby: [00:26:16] I think for me the most three important things is actually if you’ve got a niggling voice in your head, then go with it. They often say, yeah, as a mum, if there’s something that’s not quite right with your child that mum knows best. I think it’s the same with our health actually. If there’s just something that’s just doesn’t fit right. If you go to one GP and they say no, you’re fine, then explore other options and do your research. And there’s a wealth of information on social media, you know, take some of it with a pinch of salt. But if you’ve got someone like yourself that is a clinician and it’s very much verified, then take that information and speak up. Don’t feel ashamed, I think is probably the biggest one is not to feel ashamed. I did a big speech, a team away day a couple of weeks ago in front of my whole of my team. There was 60-odd people, very senior people working in the NHS and I did a talk on menopause and how it actually affects everybody in that room whether they were husbands, whether they were females. As line managers, it affects everybody and we need to start talking and we need to start articulating these conversations and not feeling embarrassed about it because it’s, you know, historically it was, you know, a problem that we just didn’t talk about. And when I was younger, you had your periods and you had your period chat with your mum, you know, in closed doors. No one would know about it. I’ve got four girls and we openly sit around the dinner table and we talk about periods and we talk about menopause and you know why we’re talking about, you know, periods and menopause, the conversation is pass the salt, pass the pepper. It is just part of those conversations that I think normalise women’s health, men’s health, talk about it and go and seek advice.

Dr Louise Newson: [00:28:03] Perfect.

Laura Bibby: [00:28:04] Absolutely. Don’t live with it.

Dr Louise Newson: [00:28:06] Very good. So thank you ever so much for sharing your knowledge and your story and your positivity as well. So thanks so much for your time today, Laura.

Laura Bibby: [00:28:15] Thank you for inviting me to discuss it. And, you know, acknowledging that people with disabilities have this struggle.

Dr Louise Newson: [00:28:20] Oh, thank you.

For more information about the perimenopause and menopause, please visit my website www.balance-menopause.com. Or you can download the free balance app, which is available to download from the App Store or from Google Play.

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