Erica’s Story: Bowel Incontinence, Birth Injury and Truth as Armour - 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. And if you had told me back then that I would be speaking about this stuff out loud, I would have told you to give your head a wobble.

Hello. Welcome back. How are you doing? Can I just say a massive thanks to everyone who's been listening, sharing and reviewing the podcast this season. It all really helps to get the word out. And I've been loving all your messages too. Thank you for those.

Special mention to the listener who told me that she had decided to stop feeling ashamed and to open up to a friend about her prolapse. And then how lovely is this? She arrived home to a bunch of flowers that evening. Sorry-about-your-prolapse flowers! What an absolutely top friend.

Lots of love too for last week's episode: Getting the Most From Your GP Appointment with Doctor Aziza Sesay, who had to put up with me wanging on about...loads of things. Vaginal examinations, a lot, for one. But she did it with elegance and a smile and loads of great tips. So listen to that if you haven't already.

Season 5 of Why Mums Don't Jump is brought to you by iMEDicare - Pelvic Health Naturally. The team at iMEDicare are passionate about improving quality of life for patients with pelvic health problems, and they supply products that are safe and easy to use as part of your rehab journey. Products like the Efemia bladder support - a reusable vaginal pessary for stress incontinence, helping you to stay active without worrying about leaks. Made from a soft and flexible silicone, Efemia is widely available on NHS prescription as well as through the affiliate shop on the Why Mums Don't Jump website, where you'll also find a discount code. Check it out.

So this week's episode feels like quite a big one to me. How one woman's story can say so much about how far there is to go when it comes to helping us get back to ourselves after childbirth. We're talking about bowel incontinence, also known as faecal incontinence, which is estimated to affect up to one in ten women after childbirth. More if you include those who can't hold wind, which may sound trivial but can obviously be pretty mortifying. Severe tears in childbirth are a common cause. Third and fourth degree tears, which affect the muscle around the anus. These increase the risk of developing all kinds of pelvic floor problems, but are a leading cause of bowel incontinence. And obviously we don't hear enough about it because it's really hard to talk about. So I'm really grateful to Erica McDonald, who is determined to try to change that. Erica is lovely. She lives in Devon with her husband and three year old daughter. I saw a video she'd posted on instagram about her experience of bowel incontinence and when I asked if she'd be on the podcast, she said she'd love to. As ever, we are not medical professionals, so don't take anything you hear as medical advice. This is Erica's story.

Erica

My pregnancy and labour was fine, like a breeze, really, everything went as it should and she was due on the 24 November, and I went into labour on the 24 November and that was fine. It was quite long, but nothing that...you'd expect that, wouldn't you, for first baby.

But at the end, she basically needed a bit of assistance, so they used ventouse and forceps and an episiotomy and pulled her out and that was fine. Babies on my chest, absolutely fine. Got sewn up there and that was fine.

And then, you know, sent on your merry way into the ward with a new born with no idea what I was doing whatsoever. And, yeah, that was pretty much the main...that was...everything else was fine, that was all good and I was really happy. It wasn't traumatic. I kind of expected to be assisted. It was a long labour of 31 hours, but everything was really good.

And then went, obviously, to be discharged. And I don't know to this day whether they tick off that you've...I know they tick off that you've been for a wee and they make sure you've done that, but I don't know if they do that for a poo. But on my notes, what I can see is they did tick that off that I'd done that. But I hadn't. And I was really sick during labour, like, profusely sick after having diamorphine, so I was really dehydrated. They did give me fluids, but after labour, what they didn't say is like, you're going to be really constipated, which I just. I kind of just. Everything going on, you just forget that that is going to happen. And so I got discharged, but with no kind of laxatives or anything. And then I got home and the first thing I knew that something wasn't quite right was...I was so poorly, I got really, really constipated, basically. And it was making me. I've never felt like this...but you can't eat when you're really constipated. And it was making me actually be sick.

I had really bad back pain. It was during COVID, so, like, my mum was there, but it was like no one else could help us apart from my mum and my husband. And it was really hard to get hold of anyone. And, yeah, so I was. My mum had to bathe me and feed me because obviously needed to keep eating and drinking, and I was in agony. And then I could...I can only explain to you is that...I basically feel like I gave birth again. But to a poo. I literally couldn't stop the urge of pushing. And I was really scared of my episiotomy - obviously, that was really sore -and I was really, really worried about pushing too hard, but I just couldn't stop. And basically that happened. And that was really peculiar.

And then after that, I remember saying to the midwife, and it's on my notes, that I can't hold in a poo. Can't hold anything in. And she said, oh, that's quite typically normal. Don't worry. You know, let it heal. Give it at least six months or what have you. And I did. I've given it three years, and I have not recovered at all.

Helen

That is such a long time. So, okay, so you're home with the baby, you've got all this going on. And I guess at that point you're probably thinking maybe this is within the realms of normal, because I've never done this before, and in a few weeks it'll all be okay?

Erica

Yeah, that's what I thought. And I'd heard from my sister in law, and other people that have had babies, that they say, you know, a woman's body never goes back to the way it was. And it will take at least a year to really recover internally. So I was like, okay. And so I, you know, I gave it best part of a year before I really kind of started thinking, this isn't normal. And I kept thinking, like, was it my episiotomy? So after five days after giving birth, my stitches came undone and I was left completely open to heal, which I didn't know was such a thing. But obviously they don't like to sew up, because they could sew up infections. So, so I was thinking, oh, maybe it's just to do with that and I would need longer because I had that. Or maybe it was because I was so constipated that I tore myself. So I really was, I didn't really know what was going on.

But after a year, I went to the doctors and my doctor examined me and he immediately said, I think you've got a tear. I think you sustained a tear. So he sent me to my local doctor's - hospital - and to the surgeon there, who within the first breath told me that sphincter repairs are not really fixable and it is likely you will be fitted with a stoma bag for the rest of your life.

Helen

Such a shock.

Erica

It was a real big shock because I wasn't really expecting that. I thought...I'd done my research and I thought, well, maybe they might repair it or maybe it might be physio. And unfortunately, I kind of...it's a shame really, because they were so adamant that I sustained a tear, they kind of pushed me down the surgeon area and department. So I went to see another surgeon who then talked about...they do all the tests, so they put balloons at the bottom and you cough and they put water up there and they see how it's happening and obviously examine you...and they scan you. And I got scanned and I have an anomaly between twelve and one, but they can't tell me what that anomaly is.

Helen

Sorry, what does that mean? .

Erica

Yes. So this is what...I had no idea. So between, obviously, as a clock between twelve and one, as a clock face, I have an anomaly between my vagina and my bottom between twelve and one. But they can't tell me what I have sustained. It's still unclear. The scan and the imagery was unclear. So to this day, I still actually don't know what happened and what's gone on. And like I say, I was put straight down the surgeon department, so I skipped physio. So it's taken me a long time because then they referred me back to physio where they offered different things, like a vagina stimulator, etc. But due to the extent of my injury, that has not proven helpful. And so I'm still in this kind of realm of not really know what's going on. I haven't had any surgery. We are...I am on the waiting list at the moment for a sacral nerve stimulator. And you do a trial for, I think it's two to three weeks, which is really difficult because you're not allowed to shower because it's an electrical pack that's on the outside, and then they put the wires under the skin of your buttocks to your sacral nerve stimulator that helps clench. That has to work over 50% within that trial for me to have it. And I'm waiting for that said trial, and it's been two and a half years to get to this point.

Helen

There's so much I want to ask you about. One thing I will mention while we're at this point is to say that the sacral nerve stimulator, if I've got it right, that's one of the things that I spoke to a colorectal surgeon, Julie Cornish, about, on a previous episode. So if anyone's kind of listening and wants to know a bit more about the kind of treatments that might be suitable, then that is definitely something to listen to.

So, Erica, am I right? We've got this situation where you gave birth. You don't know...you don't know if you tore or how badly you might have torn during the birth, or whether that's something that happened in the days and weeks that followed because of the constipation or, you know, because the stitches gave way. And still, to this day, you don't really have, like, an understandable assessment of what the damage is?

Erica

No, and I can't seem to get one. I asked the surgeon, and she said, I'm not here to tell you what's happened. I'm here to fix it. And I understand that their job is to fix things, but for me, I want to find out what actually happened and was it preventable? And for other women going through it, advice to those. And it's really difficult at the moment to really find out what's going on. And for me, emotionally, I think I will feel better if I knew what happened and what happened to me, but I can't get an answer.

Helen

That is so understandable. I'm sure so many, I'm sure everyone would want the same, because until you know your own story, like, how can you begin to process that? Like, even the physical stuff aside, how do you know what you're dealing with? How do they know what needs to not happen again?

Erica

Yeah, exactly. And, you know, the sacral nerve stimulator, even the trial in itself, is quite invasive on your life, especially if you have a...you know, you're looking after a child already, and they're saying that you can't move around too much and you can't shower. It's quite impractical and I think it's quite...I'm quite shocked that that is offered to me without finding perhaps alternatives.

What I found is that I actually found that I was looking for alternative methods and alternative solutions rather than them. And I was seeking people like yourself and podcasts that you do and other people that have been through similar situations to find support.

Helen

Talk me through what the past few years have been like for you in terms of just living your life and the practicalities of day to day and what your symptoms have been like.

Erica

So I can't hold in wind, poo, or anything and to the point at the moment, where I actually don't often feel it coming out. So that's a new thing as well. That's not always been the case, but, yeah, generally it's just really...I have found myself having accidents at the skip with my mum and went to take some gardening rubbish to the skip and I went, oh, I've got cramps. And mum was like, oh, no. I was like, mum, we have to go back. And then didn't make it. And my mum, fortunately, for some odd reason, had wallpaper in the back of my car and my mum was unravelling this wallpaper and putting it under my bum whilst I'm driving. And I'm trying to, like, drive, but elevate my bum off my seat because I'm worried about staining my seat in the car. And my mum's like this, just kindly, like, just winding down the window going urgh urgh.

Helen

Oh.

Erica

And like, it's funny. It is funny and I do laugh it off, but it has been...you gotta laugh. But I have had accident's everywhere. And what I find hard now is that, you know, my daughter has to come with me.

So there was...the other day we...I was like, I've got to go to the loo, I've got to go to the toilet. She said, okay, mummy, I want to come with you. I was like, I don't really want that. And anyway, she ended up coming with me. I go in the disabled toilet - which I always find awkward because obviously it's invisible, my situation - so people don't know what's going on. I quite often come out and get funny looks that I'm in there, but I can't actually say to them, well, sorry, I've got a non functioning bottom. Um, it's a bit of a weird topic to just open up with.

So anyway she clambers in and I've, yeah, have an accident I'm trying to wash my knickers out in the sink and dry them under the dryer and she's falling off the baby changing nappy thing and crying her eyes out. It's just...that's what I find really hard, is actually trying to be a mother and explain to her - she has no idea -and explain to her, I can't come to you, I can't hold it in. I've got to go when I've got to go. And it has affected my work. I've not gone back to work. My anxiety gets a bit...if I haven't gone to the loo in the morning, which I'm, you know, typically, luckily, person that goes - touch wood - most mornings, that doesn't happen. I notice my anxiety starting to build up and, you know, like, if you go on long car journeys, that's the problem as well, long car journeys. It's just, I also, it's just really. I have endometriosis and probably a bit of, a bit of irritable bowel. So different times in the month, different things that I eat can really play havoc with me and so therefore, I really don't know what's going to happen in the day, what's going to unfold.

And, yeah, it has had a great impact on my life and my anxiety and I recently found that...I went to quite a posh establishment and had a bit of an accident and I was in this very kind of posh toilet and I found myself wanting to be, being like, oh, please take me to just a grotty toilet. If it was in a grotty toilet, it'd be okay. And I was thinking, why am I feeling like this? Why am I feeling the need to be in something that's grotty? And I thought...so obviously I feel disgusting. I feel dirty, I feel disgusting. I want to be isolated with something that is similar. And I thought that was quite alarming because I didn't realise I felt like that. That's quite alarming.

Helen

Yeah. I've not heard that before and you make it make sense, but obviously that's not...this is terrible. This is awful Erica! I don't know what to say. This has impacted your life in every sense. You don't need me to tell you that.

Erica

I think I just compact it and put it away and don't really think about it. It's only when it happens, like, oh, it happened again, or, oh, and then you really. Yeah, it's like situations, like the toilet situation and feeling disgusting. It just kind of, it just creeps up on you and reminds you that you feel like this. But typically, day to day, if I'm having a good day, I'm absolutely fine.

Helen

And I know, like, obviously you don't need me to tell you that you are not disgusting and you do, like, you deserve all the good things and the poshest toilet in the world. I mean, are you....have you been....are you getting support? Like, are you on a regular...you know, there should be therapy. There should be, you know, this isn't working. We'll try this. Erica, what's next? Like, what's your diet like? Like, this should be happening, right?

Erica

Yeah, there hasn't been anything, actually. In fact, I spoke to a couple of people that are family friends that are quite high up in different departments in the NHS and I said, I feel like I'm being forgotten. And they said, well, we do actually rely on people to actually make their own fight with this, and ring and chase.

And I admittedly haven't done that because I've just been thinking, well, the NHS are really inundated at the moment, ever since COVID and there's obviously more pressing matters and I haven't forced it, but there comes a time when I do need to do that and they have encouraged me to actually write to PALS and try and get seen by other specialists that might be able to give me an answer or be able to see me quicker and can offer support.

But, yeah, I mean, I'm a bit advocate for the NHS. I think they are fantastic. We have got a fantastic healthcare system in place, but there are elements of it that aren't too great and this is one of them. And I think the support has been lacking. There's...not once did they offer me any kind of..yeah, any mental support. And like I say, I'm quite a mentally strong person, so I just push it behind and I just laugh it off. But it does, like I say, creep up on you at times and...yeah

Helen

Yeah, I mean, I can understand as well, like, you've got so much going on, you know, with it, with a young child and everything that's happening, like, the energy to kind of fight those battles, it must be difficult to want to do that as well. But I know for certain, like, if you need an army of people to write letters, or to advocate or ring up, like, I feel really angry! I want to, Erica, I will write that letter for you because this is not okay. Again, you don't need me to tell you, but if you need me to, let me know later. If you want me to write a letter, I'm very good at writing letters.

Erica

Thank you yes. Send lots of letters.

Helen

I came across you because I saw a video that you posted on Instagram last year and it was so moving and heartfelt and I could, I could see how difficult it was for you to share your experience on your Instagram page, which is, you know, not a place for pelvic health stuff, particularly. It's just your personal life. What was it that made you want to do that?

Erica

Well, I. My mother in law actually told me that on Woman's Hour, radio 4, they were talking about the MASIC charity and birth injury and particularly anal incontinence. And I listened to it and that was the first time I heard of the MASIC charity. And it just made me think, you know what? I need to talk about this. And I realised, I knew I wasn't alone, but it's not until it smacks you in the face and you realise how many other women are out there that are suffering and in worse situations as well, that I realised, no, I need to talk about this. And I need to put it out there.

Because I talk about it to my friends and my family, but I needed to do more. And I think, yeah, it was. I must admit, I owe a lot to the MASIC charity and yourself, because I listened to another lady that went through a similar situation and that's what made me think, no, I need to talk about this

Helen

Mmhmm Sara.

Erica

Yeah. And it was just really just stuck with me that this needs to be talked about and I have tried to talk about it ever since to anyone that will end an ear, and especially expected mothers, which I know some people say, oh, God, don't do that, you'll put a fear in them. But actually, I just say to them, whatever you do, just make sure you can poo and that you can hold it in. Just make sure you check that. Because what I didn't realise as well, which was quite tragic to hear, is that if you deal with it quicker, so if you go to the doctors sooner rather than later, there is a better outcome for you.

Helen

I think I saw that the end of 2023. I think they changed the NICE guidelines to bring in some...it's called the OASI care bundle for severe tears. If you've got a third or a fourth degree tear, there's like this set of interventions that are meant to reduce the risk of it happening and to make things better if it does happen. And one of the things that has been written into the NICE guidelines now is that every woman, after giving birth, should be offered an examination to check if there is a tear, and if they do have a tear and it's a serious tear and it's addressed there and then, they have such a better chance of going on to a full recovery.

But you're right, like, at least in talking about it, the hope is that someone else knows what to look out for, knows how to advocate for themselves, and knows that actually they are entitled to have a rectal exam after giving birth to check. That is the difference that speaking about it can make. And when we spoke briefly on the phone to set this up, you said, I think you said that being open about it was a bit of a coping mechanism for you. And I really...I've thought about that since, because I hadn't. I hadn't, like, actively thought about that before, but it makes so much sense. There's just something about putting it all out there, because if I've already said it, no one else can say it. And it's like, almost like I wear my truth as my armour. Like, this is what protects me.

Erica

Yeah. I think it's definitely the way I cope. It's like almost wearing..you know, when you wear badge when you're pregnant, you wear it on Tube. It's like me wearing a badge, being like, my bum doesn't work and I own that. For me, it just works so much better, like, if people know. And like I said, I can't hold any wind in, so, you know, if, unfortunately one slips out, I just go, oh, that was me. Sorry. Issues. And it's...I just find it so...I find it so much easier just to be like, yes, I farted. Okay.

Helen

It's really powerful, you know? Like, it's the one thing you can take control of. You can own it.

Erica

Yeah, I think that's probably it, isn't it? You probably say it very well there. I can't control my bum, so I might just control that element. And. Yeah, I think it's just. I find it so much easier just to be open. It's quite funny, actually, because my husband, we've got an ongoing joke. He will fart in public and he'll go, oh, Erica. And I'm like, don't blame me. I can't control mine. I'm not accepting yours. I'm only claiming mine.

Helen

That's so sneaky! Undercover.

Erica

Yeah. And to be fair, you know, credit to him because he's a great support. And I think, you know, he's never once made me feel disgusting or anything like that. I mean, it does...it has an impact on our relationship in a way. Not in terms of, like...I don't think he really knows...but me, I don't feel as glamorous as one should. But he has been a great support and has laughed it off when I've always been... when I needed to cry. He's laughed it off for me, which is, you know, credit there, because that's definitely what I need.

Helen

And I want to ask you how you're doing at the moment, but, I mean, from the sound of things, like, nothing's really improving particularly, is it?

Erica

No, it's not. We're in a bit of a sticky predicament at the moment because we're trying for baby number two and that's not gone very well. We've actually suffered three miscarriages. That's another topic.

Helen

I'm so sorry.

Erica

That's okay. But it actually impacts, obviously, this...because it's prolonging my journey. Although I haven't heard anything back from the NHS as to when this sacral nerve stimulator trial might be. They can't actually do that whilst I'm pregnant, I believe, or it's not something I'd like to do if I was pregnant.

Helen

Yeah.

Erica

So it's kind of really like I haven't pushed it yet because I've been trying for a baby, but now the baby malarkey is not working. It's kind of, I'm trying to put my focus on getting myself fixed. So, yeah, that's where I'm at at the moment. It's been quite delayed one way or another and because to me, there's no point fixing my bottom if I'm going to have a baby that potentially might break it again. So that's where we are at the moment.

Helen

Yeah, I mean, obviously, I just hope that you can find a way to improve your situation. I mean, I just...I know for a fact that...I feel like you might be bombarded with advice after this which is not always a good thing. But just thank you for talking about it because it's still such a difficult topic and I think, obviously, like, faecal incontinence, more so than urinary incontinence, even.

Erica

Yeah.

Helen

And it does matter. To feel like you're not alone.

Erica

Yeah. And I think it happens more often than not. And I think you think that's a normal thing after childbirth. And I kind of just want to make sure women realise that that's not normal and that's not okay. And there are different methods, like, although they just told me that there's a sacral nerve stimulator or a stoma bag. There are other alternatives out there. And I think, you know. I think now, too much time for me has passed. But had I known about those things beforehand, this journey could have been maybe a lot shorter or a lot easier. And so that's why it's so important to talk about it, isn't it?

Helen

Yes.

Erica

We all find different things, we all find out different solutions, and if we all talk about it, then we'll have this encyclopaedia of things to help us.

Helen

She's not wrong. And I also think there's something really interesting in taking control of our own stories. There is definitely a sort of power in that.

Obviously, I'm really grateful to Erica for speaking to me about this, for taking the time, for being so open. And I can tell you that since we spoke of a few weeks ago, she has chased up her appointment. She had been missed off a list, but she's now on the list for a date for the trial. So fingers crossed things are looking up. In case it's helpful, I'm going to link to more information in the show notes about sacral nerve stimulation, the MASIC charity and other resources.

You've been listening to Why Mums Don't Jump with me, Helen Ledwick, please keep on sharing and reviewing the podcast and liking, sharing, commenting on Instagram. It makes a massive difference.

And there's the book too, which came out last year, and I keep forgetting to mention it. It's based on women's stories from the podcast, as well as the expert voices who guide us through. Thank you to everyone who has read it so far and said some really nice things.

You can find me on socials @whymumsdontjump and online at whymumsdon'tjump.com

Why Mums Don't Jump is sponsored by iMEDicare - Pelvic Health Naturally. IMEDicare provides devices or products for pelvic health that are safe and easy to use, helping you to manage your symptoms while you're on the way to recovery. Products like Lumana activewear - fitness leggings and running shorts that have absorbent underwear built-in, for protection from leaks. Whether that's wee or sweat or period blood or discharge. And the leggings have a phone pocket, which is music to my ears. You can find Lumana via the affiliate shop on the Why Mums Don't Jump website, where you'll also find a discount code. Thanks to the team at iMEDicare.