Incontinence: It's Not Just You, An Interview with Luce Brett

Luce Brett is the author of PMSL or How I Literally Pissed Myself Laughing and Survived the Last Taboo to Tell the Tale. Luce became incontinent at the age of 30 after having her first son. She felt scared, upset, embarrassed, dirty and shocked. She felt it important to have a conversation to help those suffering in silence.


Transcript

There may be people out there who have urinary incontinence who have shame, don't know what to do about it and don't think they can do anything. And it sounds like you really went through the wringer. Maybe you could start by helping us understand why you wrote that in the book and what you learn through your journey.

Luce Brett 03:45

I had incontinence post childbirth, and I think I meant a couple of things by that. One is, I really genuinely felt that I had absorbed every useless bit of information about incontinence which surrounds all of us. And there are lots of things that are shameful about it. There's sort of laughing at the kid in the playground who wets themselves. There's this idea that it's connected to old people or drunk people or sick people and that sort of thing. But even more pervasive for women, I think is an idea that it's just sort of something they have to put up with, like, you know, men condescending them in the gender pay gap. And it's also something that just happens as a result of having kids. So it just happens as a result of having metaphors or a female body.

Luce Brett 04:22

So I had all that, and then when I had a baby and I started leaking, and people were sort of saying things a bit like, "Oh, you know, I can't go for a run." And I was thinking, "Well, I can't go for a run, but I also can't walk up the stairs." But people keep telling me it's normal on all women really walking around, unable to even pick up their baby without leaking. Is this just me making a fuss about something everybody has? Or is it worse for me? I couldn't contextualize what happened to me at all.

Luce Brett 04:50

When you get to a certain age - Facebook and everything - also people are advertising these products that often aren't really especially on the radar for younger people or not without just being seen as silly or icky like the sort of adult diapers and the adult pads. And when I saw those outfits, they usually featured a woman a bit older than me looking really, really happy that she was wearing a pair of paper knickers saying how great she felt. And I thought, "I don't feel great. When I put this on. I feel unsexy. And I wish I could go and exercise and I think I'm putting on weight, and I hate it, I'm worried about smelling. And I think you're gonna hear me bustling if I wear too many pads and all that sort of stuff."

I cannot cannot cannot listen to any more standard advice that feels like it's for someone else.

Luce Brett 05:25

So that's what I mean, I felt like even when there was information, it was either aimed at older women, even when it wasn't, I think maybe in an attempt to make people not feel bad about themselves, it was kind of normalizing the incontinence is okay, and sort of quite fun or a bit of a laugh. And I was thinking, even those funny jokes people tell, it's not really that fun to wet yourself on the doorstep or to get onto a trampoline and wet yourself at a kid's party. That's not actually that much of a laugh isn't funny to wet myself in the supermarket. It wasn't funny when I laughed in front of my parents-in-law and wet myself. And that's what I mean.

Luce Brett 05:57

I thought that there was just so much information, but it was quite top line. None of it addresses the emotional side of it. And there really wasn't very much fit for if you already had one baby. It was mostly aimed at menopausal women, which is understandable because lots of people who suffer from incontinence are older. But as a young woman in that situation, I just was completely bewildered because there was all the misinformation and then and there was info, it wasn't for me or it didn't ring true. I mean, I don't think lots of people do feel that great all the time when they're incontinent, I just don't think they do. Not always anyway.

Georgie Kovacs 06:31

I like how you're speaking about it. I want to give you kudos for the self awareness you had about that experience. In doing this podcast, a lot of what I hear is how women feel dismissed by their doctors. And what you're helping remind me of, and hopefully the listeners is that sometimes it's even society, or even ourselves.

Georgie Kovacs 06:55

When you talked about the happy woman and the diapers, I remember when I first had my son, and they had the picture of the mom giving their kid a bath, their first bath, and the kid is smiling. I was laughing, I'm like, I'm going to show the video of what it was actually like to give my son his first bath next to the picture that they're trying to pitch me and say, "This is not reality." I agree with you. It's not just going to doctors, and I'm not saying every doctor dismisses but in cases where women have felt dismissed, it's really everywhere.

Georgie Kovacs 07:30

How would you say that you transitioned from those frustrations to what I would call empowered to the point where you're writing a book that is getting rave reviews and getting global recognition to really change the conversation about urinary incontinence?

Luce Brett 07:51

It wasn't a short journey. It took a few years. I had a second child, and I had quite a lot of treatment. And I had quite a lot of conservative treatment and it improved things a bit, but not that well for me. And I'm unusual in that it helps lots of people doing kegel exercises and physiotherapy. I had a surgery as well, and quite a big surgery.

Luce Brett 08:12

One of the turning points was the doctor said to me, "Well, you've been sick for a long time." And I had never really thought of myself as unwell just sort of trapped in this kind of weird, surreal nightmare where it was like a superhero inverted, you know. I was like simultaneously this career mom, and these little kids, and everything's great and a nice marriage, and also just feeling really disgusting all the time.

Luce Brett 08:35

But when that operation didn't quite work either, certain things started to emerge, like I started to research around it. And I found out that there's really strong links between continents and depression, and not many people had brought that up with me. So I'd spent about seven years thinking that I wasn't coping with serious incontinence very well. And there must be all the other patients who are less than themselves a lot of leaking are not at all depressed, and it was just me. I was quite furious that the patient information was very poor about making that link.

Luce Brett 09:05

And then I experienced some worse incontinence, which was bowel incontinence. And that really was kind of devastating. I ended up signing off work because I was so sort of broken by it, and the links with that and depression are just enormous. And when I spoke to my family doctor about it, she said, "Oh, in 20 years, nobody's ever spoken about it to me on the emotional side." I thought well, then somebody needs to, and so I started sort of immersing myself weirdly in this world.

Luce Brett 09:30

I always think PMSL is... I love this book. It was my dream book and when I was 19 it wasn't the book I thought I would write when I went to university to study English. I thought it was going to be my passion. The more I found out, the more outraged I was, not just for my personal circumstances, but actually for more for everyone really, because we don't live in a world that's very kind about disgusting, embarrassing illnesses.

Luce Brett 09:52

And when you start to see the statistics like around one in three women one in four, it varies a bit country to country, one in 10 or 11 women will suffer bowel leakage post child birth. All these sorts of stats, they're enormous. If incontinent people got together, we'd be like the third biggest country in the world. It's like, we really should be kinder, right, because it affects so many of us. And similar conditions that I also had like prolapse. And that's like nearly 50% of women! It's a lot of people. And it just felt so silly that because of a bit of embarrassment and social to be we weren't really helping people. So that was that.

Luce Brett 10:25

And then the other thing was, I noticed that when I talked about it, other women came and spoke to me too. And it's happened much more since the book - with men, women and men. And when I was in a piece in The New York Times a few weeks ago.

Georgie Kovacs 10:38

Yes, I saw that. Congratulations, by the way. That's awesome.

Luce Brett 10:41

Thank you, and it was a lovely piece. What was extraordinary was people were writing in and there were lots of different viewpoints expressed. But we have letters from people who really were quite elderly - in the 80s and 90s, people talking about having suffered from these injuries and birth incontinence for years and years and years; men talking about how they'd never been able to have a conversation with their wife about it. And I just thought it would be really, really much nicer for so many people, if we found a way to get over all the things, the shame, the embarrassment, the mess that causes because the more embarrassed people are, they don't donate to continence charities, people don't research it. So the book is like my personal story. And it's very personal and sometimes quite raw. But it's also a much bigger story about I don't know, like you say, empowerment or resilience and finding out more. There's a much bigger story here that we could all sort of learn from, like how to be nicer to each other and more forgiving.

Georgie Kovacs 11:39

Absolutely. So let me ask you this, because I always find it helpful - and I hope that the audience is interested in this, because I think it is important - is the dynamics of how things work with conditions like this when it comes to the role of the patient as well as the health care provider. For example, I've spoken to sexual health experts, and they'll tell me, "We're not trained, generally speaking, unless we become a sexual health expert. We're not trained in medical school to talk about sex, so we're uncomfortable. So when people come to us, we're not sure how to handle it." Do you find that there could be an equivalence to that with urinary incontinence? So is it that patients don't bring it up because they don't know to? Or they're embarrassed? Or when they bring it up, maybe sometimes clinicians, in some cases, don't know how to handle it? Is it that there isn't enough proactive conversation? Is it a little bit of everything? Where do you see the gap?

Luce Brett 12:38

Yes, I think that there's quite a lot of things going on. So I think there is a lot of shame and embarrassment. Many, many women don't go and get help partly because they're ashamed or embarrassed. Or even worse, they believe this sort of insidious lie that it's just a natural part of being a woman, and there's no cure for it. And actually, for many, many women, there's a cure or a treatment. And we've known this for years and years. And you know, I'm not blaming anyone, by the way.

Georgie Kovacs 13:01

Of course, none of us are, we have to be real about this.

Luce Brett 13:03

I think that it's easy for women who say, do their kegels, and they don't work, and they actually need a bigger intervention, like a surgery or to use a device or something. Those women can feel as if they've made a mistake, they've not done it right. That's not true either. If you have any kind of issues, you just need to get them looked at. And then as you say, there's the next barrier.

Luce Brett 13:25

I've had lots of good experiences from people being very kind, but boy, have I heard some terrible experiences since writing this book. And I had one woman who said to me, her doctor had said there's nothing that can be done for that. She said, "After reading your book, I thought, well, I'll get back to my doctor." And I said, "Okay, I suppose it was the 1970s." It was online. So I hadn't realized how old she was when she was talking to me. So she'd been incontinent for 40 years. So the doctor had said, "Well, there's nothing that can be done about that." And then just last night, I was speaking to someone incredibly senior, a broadcast journalist in the UK, quite a famous face, whose doctor told her there was nothing that could be done. And you think, even now, that's hard.

Luce Brett 13:59

Obviously, in some parts of the world, I'm very lucky. I live somewhere where there's a good health service, and there are commitments about maternal health, but some people don't. I think the other problem we have is this societal thing in medicine. And I think this is quite global. That post birth body is until the baby is six weeks old, or 12 weeks old, or three months, or, you know, at the best, what a year. I'm 43 and my eldest child is now a man or nearly a man, and my body is still my post birth body. It's still got issues from being a birthing body. And that would be true whether he'd survived birth or not, you know? We don't really accept that and that's part of an even bigger picture, which affects us and society and medics which was is this idea of treating women's bodies and how they change, how they age, especially around birth and menopause as kind of inconvenient and embarrassing and something women should sort out themselves. And that sort of pervasive lately.

Luce Brett 15:06

I think the other thing that happens, and this is really sad and stressful, but it's true, it's horrible to talk about, but I'm going to just because so many people have come up afterwards and told me that they never told their husband or their wife or their parents that this has been happening to them. Leaking from your bowels, especially as a result of childbirth, that just sort of generally anyway, is so shameful, people don't talk about it. And that I think, can sometimes be a quite difficult pathway for older women, because it can mean lots of different things. So if a doctor finds out about that, it's going to be quite complicated for them to sort out because there's lots of different tests. There's lots of different reasons why that might be happening. So it's complex and stressful and boring medically speaking.

Luce Brett 15:46

I read a piece of research that suggested that some doctors were afraid to even bring up bowel incontinence with older women because there's not much they can do about it easily. And that's outrageous, because bowel incontinence, the people who suffer from it, older women are the biggest group. And we don't think about that as a society, but it is because of birth injuries and things. I describe it as like two taboos start co-sleeping, when you get two taboos together, like depression and incontinence, or sex and incontinence. It's almost like we haven't got the language and like you say, a lot of medical books are quite angry. And I understand that especially from women's point of views. I've read lots of them. And I think there is a lot of medical misogyny and stuff and a terrible around black and minority Asian and women of color - it’s terrible, so I understand so much anger.

Luce Brett 16:35

I'm in a very lucky, privileged position, and I have a health service and I was ballsy enough to talk about it. PMSL isn't ranting about that. I can see what's hard for medics as well. I mean, mine's a love letter to the medics I saw, but it's trying to point out that there is a bigger conversation we all need to have.

Luce Brett 16:53

If nobody brings up sex and incontinence with women, even when they are the ones that show up and say in my life is really bothered by this, I can't carry on. They never bring it up. So the women don't have permission to talk about it and continue with this idea that we shouldn't have decent sexual function, that we don't function sexually, we're not important sexually once we're no longer childbearing age, or we had our babies, or whatever. But also nobody gets any practice so we're bad at it. It's like you can be talking to a very experienced doctor and actually, they'll have 20 conversations about prolapses in a week, but they might only have one conversation about sex because no one brings it up. And I think that that's a real issue for them. They're not trained in it.

Luce Brett 17:35

And then for women, because I had people say things to try and be kind and isn't that always the worst beginning of any medical story? Being kind, they'll always be kind. They'd say things like, "Well, your husband still loves you, doesn't he? He still loves you, and you had another baby. It can't be that bad."

Luce Brett 17:51

I thought, "Well, I'm so glad to have a husband who didn't leave me because I leave urine and sometimes feces because I had a difficult birth and my body wasn't really designed to do that very well. I'm really glad he didn't." But actually, that sentence carries with it lots of things that are quite upsetting, like a sex toy. Does it not matter to him that I feel horrible? Should sex be something where I, I'd say in the book. It was a very hard chapter to write, and I feel always worried there'll be spelling mistakes because I couldn't really read it after I wrote it. But I thought about being frightened of my bedroom. You know, I didn't want to do that. Except for I did because I wanted a relationship with my husband. So then I was in this like, sex becomes something that's all about anxiety. Well, that's not I mean, it's certainly not sexy.

Luce Brett 18:03

But I mean, it's not healthy or good for you or your relationship. I'm not the only woman who has been through that. Well, I know I'm not from the stats. It just makes me really sad that we can know that that's a factor, but not really have found a useful way of telling anyone. So I thought, well, at least if I say, Hey, I'm going to put it out there at least. So I've put it on the table. You don't have to do anything, but you know, it's there. Yeah, and maybe that will help one person. I can go and get some help. I mean, also for myself, of course, you know, for young me it's sort of a book I wish I'd had because I felt very lonely.

Georgie Kovacs 19:13

It's incredibly powerful. And I can only imagine.

Georgie Kovacs 20:05

A friend of mine had a baby since I had read your book, and we were talking. She didn't specifically, I don't think, indicate she had urinary incontinence, or she thought she might. I don't remember how it came up, but I told her about your book and your story. I know enough about being proactive to see the PTs who specialize in pelvic health, and I suggested it to her and I warned her what will happen at that appointment. I shared it's not like your typical PT. They go inside of you, and they massage your vaginal cave. And so just be prepared, but they do it gently. I've spoken to some of the experts. But you've got to get it taken care of. And she did. And she just had to do a few PT sessions. And now she knows how to do proper kegels.

Georgie Kovacs 20:48

The other thing I learned is that certain people need kegels but it has to be the right kegel exercises. Because if you do the wrong ones, it can actually make things worse, depending on whatever your situation is. So I wanted to thank you because you helped my friend out.

Georgie Kovacs 21:04

More so, what I wanted to do is talk about some of the solutions and warning signs. We've talked a lot about the dynamics and healthcare system and the shame and I think you're doing a great job of explaining why it's important to bring this up with your doctor and have that conversation.

Georgie Kovacs 21:21

What can be done, just so people are aware, for example, if you're proactive earlier on. Does it help with healing much faster? I know that you're not a medical professional, but what I have found is when you're dealing with a chronic condition, you almost become a doctor because you read so much about it. So I'd love to get your perspective as the patient who's really become quite an expert on the topic, what you would advise people who are struggling.