Luce's Story - Episode Transcript

Helen

Hi, I'm Helen, and this is Why Mums Don't Jump: busting taboos about leaks and lumps after childbirth. All the stuff that happens to your pelvic floor that no one ever talks about - incontinence prolapse, pelvic pain. Problems that affect millions of women, one-in-three! I'm one of them. I have a prolapse. My pelvic organs fell out of place after the birth of my second child five years ago. And if you had told me then that I'd be speaking about this stuff out loud, I would have told you to give your head a wobble.

Helen

Hi, welcome to episode five. Thank you for listening. I've had so many lovely messages in the past few weeks and it just hugely underlines the power of sharing stories, to feel connected, to feel you're not alone, to know that so many other women around the world can relate. I keep thinking it'd be really great to know exactly how many women are muddling through life wearing pads to keep them dry or plastic donuts to hold things in place. I don't think there's a definitive answer to that question. I think there's still a lot of research to do and I think pelvic floor problems are underreported for all the reasons we already know about. So one in three is a figure I've been using, which is women over 25 with symptoms of prolapse or incontinence. You can find a link to that research on my website. In this episode, you're going to hear us talk about half of women having prolapse. That's for women over the age of 50. It's a figure used by the Royal College of Obstetricians and Gynaecologists here in the UK. So it's just another illustration, really, of how widespread these issues are, how crazy it is that they're so hidden, and how more research, more facts and figures would be great around this stuff.

So, this episode, I mentioned that I went to London to record with some fabulous professionals and women who were prepared to share their stories and Luce Brett is one of them. She's an author who's written a book about her experience of becoming incontinent after the birth of her first son. She's passionate about ending the stigma. In fact, the first time I rang her up, she told me she was quite happy to be the poster girl for incontinence. And I thought, yes, this is someone we need to hear from. Then she let me turn up on her doorstep late one evening when she just finished work and the house was being renovated and she'd had no dinner. She's one of the good ones.

Helen

Take me back. I know we're talking more than a decade ago now, but can you even remember when you first realised that you had this problem?

Luce

Well, when I very first had my son, within hours and sort of days of it, I was a bit leaky. But I think you're kind of prepared for that. Had the hospital bag with pads in and I knew that there would be some potential collateral damage with any kind of delivery, really. And I'd had a vaginal delivery and a tear and stitches, and I'd also had some haemorrhages afterwards, so it had been quite physical, if you like. And I felt that I was leaking quite a bit. But it was a funny thing because I was so upset about all the other stuff. The midwives on the home team were really friendly and kind, but they were sort of like, “it’s alright, this will improve, don't panic, you know, you're breastfeeding, there's hormones. You know, give it a couple of months, see how it's going”, sort of thing. And, so fine. And I carried on and I knew all the stories, like people sneezing or going on a trampoline or dancing or whatever, and wetting themselves. So I had those things in my head and I realised that I was, well, I couldn't tell if it was normal or not, but for me it wasn't like I sneezed and wet myself. It was like, climbing up the stairs that made me wet myself or pushing my pram up a curb or whatever. So I thought it felt like my tolerance was pretty low for sort of keeping wee in, but again, sort of plodding on a bit. And then I also noticed that if I got really emotional, sometimes I wet myself, which, again, hadn't happened to me before I had a baby, and that seemed a bit odd. And I was very emotional because I just had a baby in this quite sort of nasty aftermath to my birth. So I was quite sort of stressed, and upset and miserable and everyone kept being sort of so sweet about how hard it had all been, that it was sort of simultaneously really lovely, but also almost dreamlike, because I felt like people kept giving me advice that was for somebody else. And because we don't talk about it in this sort of completely open way, you never say…urrm like people say; “oh, I sneezed, and I wet myself…Well, guess what happened? Or I had to wash my jeans” and you've got no one to ask, necessarily, unless you've got a really great relationship with your mum and your friends. And I love my friends and I love my mum and I love my sisters, but we don't necessarily always talk about stuff like that, and we certainly maybe didn't then, but you don't get to say, “what do you mean? Do you mean like a teaspoonful or just full voiding?”

And so all this stuff was sort of bubbling around and then I had my six week check, but because I'd had these grisly haemorrhages which were really horrid afterwards, my son was, like, totally fine. He was signed off within minutes of popping out, all like, pink and furious, and I was like this sort of haggard wreck. So we had to go to the hospital, to the consultants for it and it was weird. She even examined me and everything, and it was just this sort of genuine moment and I can't really describe what changed, but I was sitting opposite her and she was sort of like, “you know, you've had a pretty tough time, I'm not surprised you’re upset”. I was a bit tearful. And she was sort of saying, “you know, let's keep an eye on that”. And she just said, okay, if anything else. And I just suddenly thought, like, do you know what? And I said, I'm a bit worried about leaking. And she started and everything she said was, like, totally evidence based and she was a wonderful consultant, actually. The rest of the story will bear that out. She sort of started talking and I was like, no, not this, not sneezing, not something that's just sometimes, this is all the time. I don't know. I can't tell where I begin and where my pads end. I don't think anyone in my NCT group is using this many pads, or at least when they're making jokes, they're not making jokes that make it sound like my experience. Even the sort of risque jokes when they make about it aren't marrying with what's happening to me and it feels all completely out of place and it's all wrong. And perhaps I'm a terrible feminist. I don't even know what it should look like in the first place, if I'm completely honest, and I certainly don't understand what it looks like now. And I haven't really dared look that closely because you know, stitches are disgusting and so I thought, no, I don't think that's right. And I was like, everything, everything makes me wee, just everything. And she's like (sigh), “can you get up, come on, get back onto the thing”… And she did sigh, but I mean, like, you know, I can't blame her. So I took all my clothes off again, or, like, the bottom half, and then she started looking again and she started focusing more on my…what I realise now was a pelvic floor examination, but I'd never had one before. She was ever so gentle and kind, of course, you know, even six weeks later, you can be bruised and swollen and it's all just such a…I mean, it's just such a mess in your pants. You don't really want to but anyway, she went through and then she was like, actually, when she'd finished, she was like, “you do have a prolapse. I'm really sorry that's happened”. And I didn't know. Is that good or bad? I mean, it probably wasn't good, but I mean, what's a good prolapse? What's a bad prolapse? Does it matter?

Helen

I'd never even heard of it. I didn't even know what one was.

Luce

And yeah, it will happen to almost half of women and no one talks about it, really, or if they do, they sort of did it and that's sort of it makes me think of them. It's funny with a microphone to do it, but that sort of Les Dawson, sort of like pulling a funny face, like an old woman sort of reference of it. And this is a real thing that happens to lots of women. It happens to younger women as well. And there are women with a propensity, so there'll be women who are super fit, super slim and everything, who've ended up with prolapses even before they've had kids or certainly afterwards and those sorts of things. So, but I didn't know all that then. I was just lying with my wet leggings around my ankles thinking, like, I've got to get my baby to… I'm supposed to be meeting a friend to go to baby cinema because I'm going insane already. And I think I should do loads of things and I feel like I've missed out on everything by being in and out of hospital for weeks, and I want it to be nice. And I'm supposed to meet my parents and all these things were going on and I really wasn't listening to half of what she said anyways. She may well have explained it much better than I'm giving her credit for, but you've got all these other things going on, haven't you? Once your knickers are down, you're not just focusing on them saying prolapse, you're thinking of every other time you've had bad news or trying to work out whether it's good news or bad news. And she was like; “you need physiotherapy”.

I had a year of physio and then I had another baby. I was very lucky, had another baby, had a very similar physiological experience, a similar term, so it was second degree, but still did quite a lot of damage. But they didn't really go, “it's all going to be fine this time”. They were a bit like, “okay, we need to get you into physio really straight away”. And so I went to physio and that was amazing and it was for quite a long time, but I managed to work really hard at things. I was pretty dry. If I drank too much booze, I'd wet myself. I also had to do bladder retraining because of the crying and wetting myself, which is a different sort of…

Helen

What’s that (bladder training)?

Luce

So there's lots of different techniques you do, but it's a way of coping with another type of incontinence. So there's stress incontinence when you jump and it's like a physical stress on your bladder neck. I have been getting this right, and then there's urge incontinence, which is a physiological process, but it's also got an emotional element to it. So for that, I had to keep a bladder diary, which is okay, I guess, in certain circumstances. Quite stressful for me because I was like, back at work when I was doing my bladder diary, so I'd have to…I mean, how do you do that in an office environment? I did it by working out how much a…I can't believe I'm admitting this… how much wee would fill, like, a Prêt cup (Helen: Oh Luce) and then rinsing it and keeping that, because you can put that in, like, a cardigan pocket or whatever. And then I would wee into that and work out where it was in the Prêt cup so I could keep my bladder diary. Because obviously, if you were at home, you might be able to wee into, like, a plastic measuring jug, (Helen: yeah) but I couldn't. And you have to measure everything in and everything out. So the easiest way would be to use the same receptacle, but obviously you're not going to use the same… I'd have to have two Prêt cups or two Starbucks one, but yes, I got to like it's like I've done Mastermind for, like, 331 mills in this mug in my head. But, yeah, that's why I had to keep a diary of how much goes in, how much comes out, when you're leaking, when you're not, and then you start to spot patterns. And sometimes with bloody retraining, you have to work really hard at avoiding behaviours that don't help with that. So, for example, I had to learn not to run to the loo. You got to say, (sigh) I'm just going to walk to the toilet.

Helen

Okay…

Luce

I'm going to train my bladder that we are going to walk.

Helen

Okay

Luce

We are going to wait, we're going to take a deep breath, we're going to get all these clothes off. I mean, obviously, what happens for loads of that at the start is… This is sort of like incontinence top secret information, for example, that if you're someone who that sort of thing happens to, it's not actually getting there and wetting your trousers, which is dreadful. That's the worst thing. The absolute bloody worst is you get in, you get close, half down, and then you wet yourself, because then it's everything. There's no, like, if you've got black leggings on and black shoes, you could just about get away with running out of the office to Primark, but once you've wee-ed all over your knickers on the floor, that's the sort of thing that's so gross and really hard to sort of find a way to talk about it. So I don't know how many women with urge incontinence there are who were my sort of age, but I tell you what, I couldn't find any. And it was so lonely. It was so lonely. And I used to have to carry a spare pack of clothes in my handbag and I had this male GP once and he was like, “what, everywhere?” And it's like, yeah, everywhere. He was just like, “really?” And it's like, well, what did you think I'd do?

It's sort of like a secret code, I guess, and I had to learn that all for myself and heaven knows, I probably made a mess of it. But that's the sort of thing that you have to do with bladder retraining, and that's the sort of thing you have to do when you've got continence issues and there's no one to talk to about it who can really say; “Oh, God, don't worry about it, just throw them away. Throw those jeans away. If you're not sure you've got the smell out the first time, just throw them away”. But you need that. You need, like a big incontinent sister to come and tell you that it's okay, it's okay to cry about it. And I felt I couldn't have that, so that’s bladder retraining, after my first one, and then I had a lot of physio after my second one, and some of that helped. We got up to a certain level with the scores, but we couldn't get over it. And I was still leaking quite a lot. And she organised for my case to be reviewed by what's called a multidisciplinary team, and for them to discuss whether I should have surgery or not.

Helen

And you went ahead with that, didn't you?

Luce

Yes, I did. We had to do quite a lot of tests first to check I was the right sort of candidate. And it's quite a complicated landscape, because when I was going through it, the gold standard operation that most women were having was the mesh operation. A TVT or it's got various names as various sorts, but when we insert a mesh and use it…

Helen

…which we now know has been very controversial.

Luce

…yeah. Even back then there were some stories about it, but it was still very much the gold standard.

But they felt that a more invasive and kind of aggressive operation, which is based on a much older one, would be more appropriate for me. So I had what's called a Burch Colposuspension, which was quite hardcore, and it was quite a difficult recovery. Like, I ended up in and out of 24 hours GPs and all that sort of stuff. So it was quite a culture shock to walk into a hospital sort of fine, but wet myself a bit and to leave an invalid. But then when I recovered from it, it had worked quite well. Not perfectly, but quite well. So I still leaked a bit, but it had helped. My lovely, lovely surgeon who did the operation had described my incontinence as florid, and he said it was like off the scale in one of his letters, I think. And he was very, very kind to me because he was, he was incredulous that I was putting up with this shit. He was like, “what do you mean? You've been in physio for two years”…and he was like …”why haven't you come before asking for surgery, asking for it to stop?” And I was like, I don't know, because I'm still not convinced that I'm not making a fuss about something that everybody else is going through. And maybe I am. Maybe that's the awful truth is actually mine's the most minor, incontinence story, and everybody else is feeling they can't talk about it. I really hope that that's not the case, because I just worry that there must be women going through dreadful stuff.

Helen

A friend of mine asked me the other day, like, why do people find this so hard to talk about? And all I could really sort of say was, it's just so embarrassing. And she was like, what's embarrassing about it? Because children don't have a problem with talking about weeing and pooing and bits. So at what point does that just become so distressing and stigmatised?

Luce

I think that so I think there's lots of things going on. I think culturally it's not quite the same in some places, but I think it's because it happens to women. Incontinence happens mostly to women. It happens to women who are older. And traditionally there have been other taboos around older women, whether you're looking at witches or old women being sort of becoming like embarrassments or mad people in the corner. I think it's because those old women aren't always cared for, so that being incontinent is one thing, but smelling is another, and I think that can be quite tricky. I also think we've still got loads of stigma about women's genitals, and everybody can draw a penis, and I know loads of people who couldn't tell me what a labia was on a rudimentary drawing. I don't know many people who could draw a clitoris and I think that we're told that women's body parts shouldn't smell, they shouldn't have hair, they should have no odour. Well, that's not true, is it? Like, we want it to be sanitised. Because we don't want to talk about it and we don't want to look at it and it's all disgusting. And when women do talk about the bits, like, oh, my God, going on, and on. So I think incontinence is really tied up with that.

But also my other theory is, I think people don't like incontinence because it reminds them of the worst things, it reminds them of ageing, it reminds them of decay, it reminds them that all bodies break and can be fallible. It reminds them that they are as likely to be struck by an embarrassing thing as anybody else. And I really feel it's like that. And there is a way to break the spell, because I've thought about this a lot over the last few years, and especially when I've been writing about incontinence. And one thing I've been really keen to explore is how you flip it. And there are ways of flipping that through, and they are about naming it and you name it and it loses some of its power and then you find out about it. So what we were saying earlier, you find out about physio. Which bit goes with which bit? Why do those muscles work? What does a pelvic floor muscle look like? Pretty disgusting, actually, when you actually get a model and really look at it. But also how clever a hammock of muscles to hold everything up, brilliant! And then you can uncover it and cover it and cover it because there are surveys that would suggest that women who are incontinent are much more likely to get post natal depression and much more likely serious depression is linked with incontinence. There are parts in the world where it's so shameful that it's seen as a curse or religious curse from God or whatever. And actually what is it is a mechanical fault that can usually be fixed and even if it can't be cured, mine couldn’t be cured, but it could be helped and it could be changed and didn't own me anymore. And I think that those are there. And the taboo can do it, but it's about sort of chipping away. If we could even start talking about it a bit, then stigma can't bear it, if you name it.

Helen

So I'm imagining someone who maybe listening to this and has very recently had a baby and found themselves in this position. What would you say to them as someone who's really gone through the mill with it all, but is in a better place now?

Luce

Also, you're not alone and that is quite useful to know. There's loads of help out there and that help is really various as well and often completely low risk. There are pelvic floor exercises, there are websites that can tell you, your GP may well be able to help, your Practice Nurse may be able to help, your local physio may be able to help. You might even find that you've got a gym instructor or a Pilates person or someone who can help. You could even go online and look at them, have a feel, see if you're doing them right. I'd always say go and find someone, but you could start there.

And most people it takes six weeks of physio to get to a situation where they're much more dry. So those sorts of things, fine. And with prolapses also, there's a lot to be said for looking at online, finding out what it looks like, what it is and then starting to make decisions. Because again, this doesn't have to mean surgery, it doesn't have to mean no more kids. Loads of people have pessaries or other sorts of devices which are… they look a bit alarming, but they're there…there's so many things out there that could help and could help in a way that might make you feel so confident that you can then address the other things. And heaven knows if you've got it and you end up feeling miserable and depressed, definitely get yourself some help for that because it is so easy as a woman in this sort of situation to sort of beat yourself up and stuff. And it's like there's help out there if you're feeling a bit miserable, if it's feeling a bit overwhelming, if you're a bit upset. And again, that doesn't mean being locked up or taking antidepressants necessarily, if you don't want to, but it is there and there's more of it than you might imagine.

Helen

Something very exciting is happening now.

Luce

It's so exciting and so sort of strange. It's quite a sort of surreal world, but yes. Yeah. I have written a book about incontinence. Partly for other women like me or like I was, who maybe don't realise that there's a load going on and because I don't think mine is necessarily a remarkable story and I think that there must be other women who didn't have the exact same experience as me, but had some of the same feelings and some of the same loneliness, and I wanted to make sure that they had a chance of finding out. And also I wanted to explore some of the things we talked about today about taboo, about why people joke about it, about whether there's something in my makeup or in everyone's makeup and what I learnt at school and that affects the way we are all reacting now to all of this. And I really hope that that does make people laugh as well, but also give people a way in to thinking about it and talking about it. They might not talk about it as I did, but even knowing it's there might help some people.

So I'm really excited. But it's not out until June, it's coming out in World Continence Week, which it's a very strange world I found myself in. But if we can help people, then I think it's, like, not in a pious way, but if this so I found out I was inconsistent. That thing I told you right at the beginning about the Doctor and sitting there and I walked out and I was, like, standing on the hill with my baby in a pram and looking at the sky, and it was, like, late summer and my legs were damp and I was like; what has happened to me? And how am I ever, ever going to feel normal again? And I just didn't believe that was possible. And maybe it's just time, I don't know what it was. Look, I'm crying now. I don't know what it was, but I do feel better. I did feel better. I do feel more like me. I feel like I'm more than a prolapse or a scar or a disgusting condition, or swearing or being upset or getting drunk about it or any of those things. And I think that that is there for loads of people, hopefully probably much quicker than me making a mess of it, but I think it is there. And I'm not normally a hopeless person, I'm normally enthusiastic and Tiggerish and I don't think I would have believed you if you had said it to me, but maybe if you had said, “and look, here are some stories from other people”, then maybe I would have felt they would be all right.

Helen

I think it's going to make all the difference to so many people. It is totally exciting.

Luce

Yes.

Helen

Congratulations.

Luce

We need to say what the title of it is, though

Helen

Go for it!

Luce

It is called PMSL: How I literally pissed myself laughing and survived the last taboo to tell the tale…which is quite long, but we wanted to make sure that everyone knew what was going on in the book. And it's also got a really lovely cover. And don't worry, it's not like an embarrassing cover to carry around.

Helen

Are you going to show me in a minute?

Luce

Yeah, I am. It's amazing.

Helen

Right, well, let's clock off and I'll have a look.

Luce

Thank you.

Helen

I feel like the fact that we're now in a place where an incontinence story is being published at all is something to really celebrate. Luce Brett's book, PMSL, is released in a couple of weeks. It's available to preorder now. I will put the link in the show notes. And can I just say how much I loved the idea that stigma can't bear it if you name it.

In the next episode, I'll be meeting the pelvic health physio Emma Brockwell on Instagram. She is @physiomumuk.. She's up to all sorts, but most recently, she co-wrote the first set of guidelines on postnatal running. Now, for me, getting back to fitness, figuring out how to break a sweat without losing my insides, has been a big part of all of this, so listen out for that.

Please don't take anything you hear in this podcast as medical advice. Do seek out your own professional help, but please do get involved. Subscribe, tell me what you think and spread the word. Tell a friend, leave a review, spam a WhatsApp group. Let's end the stigma. You've been listening to Why Mums Don't Lump with me, Helen Ledwick. You can find me on Instagram @whymumsdontjump or online at whymumsdontjump.com

Bye for now.