Pelvic Floor Surgery: Colorectal - 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.

Hi, welcome. I hope you're doing really well. I'm going to talk about surgery today.

This week's episode has taught me quite a lot, actually. I'm going to be really, really honest with you and say that I think I've been, you know like, quite wary about surgery, and I'll explain why:

I like to put things into neat little boxes in my brain. Like, compartmentalise and it doesn't always work out, because obviously not everything is black and white. And I realised that surgery has been in a box, in my head, marked beware or caution, something like that. And that's partly because my prolapse symptoms have never been chronic. I knew a surgical fix would likely be temporary, it would carry lifestyle restrictions anyway, and I've learned to manage my symptoms. So for that reason, haven't wanted to do it just now.

But also, the vaginal mesh scandal made me wary. This poorly tested synthetic netting that's been used and has left many women in chronic pain. You'll know, probably, it’s been banned now in some countries. It's restricted in the UK. And a report out in the UK in 2020, the Cumberledge Report, found that a lot of the suffering of these women was just ignored, or worse than that, dismissed as women's problems. You know, again this normalisation of pain for women. So there's a lot to not like and a lot to get angry about. So that's kind of where my head was at.

But having said all of that, I am also sure that surgical options are many and varied and of course, they're sometimes necessary.

And there are also non surgical options beyond physiotherapy, like the PTNS that we heard about with Sara last week. So I think it's really important that we don't just lump it all into one box. I don't know, maybe I'm the only one who did that, I don't know. But it's important that we try to understand how it works.

So that's kind of where I'm at. And I thought I'd do an episode giving an overview of surgery for pelvic floor problems. But for all the reasons I've just talked about, it's really not as simple as that. It's a complex field, so we're just going to focus on one specialism. And there are several, by the way. I'm not a medical professional, but for a quick rundown, gynaecologists deal with all the female reproductive stuff, urogynecologists specialise in pelvic floor dysfunction, urologists look at bladder issues, amongst other things. And colorectal surgeons, well, they basically look at the back end. So there's a lot of crossover, obviously, between all those and a lot to cover.

But for this episode, I've been speaking to a colorectal surgeon about why you might end up in her office and the sort of treatments that might be offered. She's Julie Cornish, she's based at the University Hospital of Wales in Cardiff and she has a special interest in pelvic floor surgery. She was very patient with me. We talked on the phone this week. I was like, I just want to do an overview of all surgery for pelvic floor. And now I kind of realise that was maybe aiming a little too high...

So let's focus on your specialty. If we're talking, as we do with the podcast about women, specifically with pelvic floor problems, or problems that happen after childbirth, what sorts of conditions within that framework would you treat?

Julie

Okay, so there are four main things. So the first one is difficulty going to the toilet, doing a poo. And that can be sort of constipation, as in, it's quite a long time in between going to the toilet. So normal is less than three days. Most people open their bowels every one to two days, but if you're going three days or longer, that is not normal. The next thing is that you are going, but when you go, you don't feel like you're fully emptying. And that's what we call obstructive defecation. Okay? And that can be related to rectocele, it can be related to pelvic floor muscle dysfunction, what we call Dyssynergia or Anismus.

It could be related to pain. And pain is another thing that comes in. So (for example) haemorrhoids typically aren't painful unless they become sort of acutely inflamed. But if you just...for lots of people have haemorrhoids and they don't cause problems, maybe a bit of bleeding. A  fissure, so a tear, causes pain. And then the other thing is that you go too often, so either have diarrhoea and you can't control it and you have urgency and you have to rush, or actually you have accidents and then you have things that come out the bottom, like prolapse.

Helen

Yeah. Okay. And the treatments for those kind of things, I imagine there's a whole range of different surgeries. Or is there like one overarching principle? Are you basically trying to shore things up or put things back where they were? Or is it just a whole different array of treatments?

Julie

Actually, most patients, you don't sort of go in guns blazing, saying that they need surgery. And actually, a lot of the things can be managed really well by simple measures, but you have to put them together and they take a bit of time. So drinking enough water, most busy mums don't drink enough water. And diet - so again, if you're just snacking or you're grabbing things on the run, or you're kind of eating your kids leftovers, or you're just having ready meals because that's all you've got time for, then your diet isn't particularly good. And the combination of that can make you constipated. And if you're someone who had a tendency to constipation, that might be enough to put you over the edge, where actually you just then start to struggle. And if you start to struggle, it becomes painful and then you don't want to go and it becomes a cycle. So diet.

Going to the toilet. So we're designed to squat. I certainly don't suggest you sit on the toilet sort of in a frog position, because that won't do you any good. But essentially one of the things we always say is you need to have a footstool underneath your feet when you go to the toilet, which I'm sure other people have said. And what it does, you basically open up the anorectal angle and it makes it easier to empty.

Then you talk about sort of pelvic floor. So I know you've had a lot of physios on the programme and I'm sure everyone should be aware, but do your pelvic floor exercises. And it's not just for Christmas, it's for life, right? So I think that the difference, actually, one of the key is when you have a baby, you're discharged after six weeks from obstetrics, but I keep patients essentially for the remainder. So I think, unlike sometimes with urogynecology, there's this disconnect of consequences of having a baby and what happens later on, and I see a lot of the consequences. So forceps delivery is really associated in my mind with rectocele, obstructive defecation, difficulty going to the toilet, and it's about having that physiotherapy afterwards. Really important.

So we said diet, said lifestyle.  Medication, don't go for stimulant laxatives. And what I mean by that is the tablets. So they're a quick fix, they're easy to take, but actually the bowel over time gets used to them. So we talk about having stool softening. So Fybogel is one. Or if you don't like the sachets, you've got Psyllium, Husk or Flaxseed or Linseed. Then you've got Movicol or Laxido, which are osmotic laxatives. Where you drink them, they don't taste that nice, but they're okay. Dolcosoft is quite a good one actually. That's a smaller capsule, but easy to take.

Keep a bowel diary, that's really useful. There's a lot of apps that are out there. So the Bowelle app is a free one. That's an IBS tracker. And there's a really interesting link between the brain and the gut, something called the gut brain axis. The more stressed you are, the more your stress hormones affect your bowel and can promote symptoms of bloating and discomfort or diarrhoea or constipation, depending on which kind of the spectrum you are for IBS. And the more uncomfortable your bowel is, actually, it's linked with causing depression. So it really is a vicious cycle.

Helen

That makes total sense. I've never thought about it before. But everybody, or I think everybody, knows that if you ever have a really nerve wracking event, I remember years ago being at university and being in a sports event and getting diarrhoea the night before because I feel nervous about it. And, yeah, of course, everybody also knows when you need to go and you can't, you get really grumpy. And if you're dealing with that and pain on top of that, on a day to day basis, of course that's going to not take you to a good place.

Julie

And we definitely see it for ladies who are sort of struggling to hold that sort of urgency - got to go now, or can't put it off. The more you think about it, the more anxious you get. The more anxious you get, the more you have to go. So a lot of what you can think about for your bowel symptoms is actually a bit of a mindfulness thing. So we talk about different apps like Headspace or just cognitive behavioural therapy, and it can just work to calm things down, to allow you time. The other key thing that is worse for men, but women do it too, is don't make the toilet like a man cave, where you take an iPad in or a book and sit there. Even if you say, I'm not going to the toilet. If you sat on the toilet, you've had 20, 30, 40 years of telling your body to go to the toilet. You're straining. So your toilet, much as you want to lock the door and hide away from the kids, it is not a sanctuary. Do not sit on the toilet.

Helen

Oh, no. Yeah. That has become a bit of a,  it has become a sanctuary. I was like, if he can do it, I can do it, I'm in there now.

Julie

Put a chair in there, or a stool, but don't sit on the toilet.

Helen

Okay, right. Because even just the act of sitting there, what does it do? It tricks your body into thinking that you need to go all the time?

Julie

Yeah. So essentially, when you are going to the toilet, it's a really delicate balance. Your brain is sending a whole lot of signals and some of those are unconscious, and those unconscious signals and relaxation or contraction is happening because your body said, right, this is where you are, you're on the toilet, you're about to do a poo. Get ready. So the only one that's under your voluntary control is what's called the external sphincter muscle. So the outside muscle in that ring, but the internal one that's relaxing or contracting outside of your voluntary control.

Helen

Wow. So there's a lot you can do. And so I guess I assumed that you would have, as a patient, someone would tell you about all of those things you can do before they get to you. And then you're like, none of that's worked. So now we're ready with surgery. Because that would be the next thing to try. So that's not how that works.

Julie:

That would be ideal, that's what we're aiming for. The difficulty is that education actually, as much as anything amongst health professionals, isn't there. There's a real bias in a way, towards bladder incontinence. GP’s get a lot of training on it, it's in the medical curriculum. Doctors post-qualification get training on it. But if you look at faecal incontinence or bowel incontinence, it's virtually nothing. And actually the treatments for the constipation incontinence, although they're slightly different in what you say, you go through the same pyramid of diet, lifestyle, medication, exercise, physio, that kind of thing, and that should just be embedded within a core culture.

Helen

So if none of that works, presumably that's the point at which there's conversations about surgery.

Julie

So at that point, if they haven't had it already, you start thinking about different investigations. So typical investigations are going to be physiology, where you're basically a lot of these, unfortunately, involve probes in bottoms. It's kind of the way it is.

Helen

By its nature.

Julie

It's not painful, but it's not exactly pleasant. So a probe into the bottom and the lady is asked to squeeze and it produces, depending on which kind they're using, a lovely kind of colour diagram that tells you red is sort of high pressure, blue is low pressure and which bits are working, or which bits are working too much or not enough.

So that's anorectal manometry. Then a key one is endoanal ultrasound, and again, that's another probe. And that's looking at the ring of muscles, the internal external sphincter, to see if those are intact. So is there a break in the muscle? Is there any evidence of scarring? So if you've had a vaginal delivery and you've potentially had surgery to the bottom for other things in the past, then you might have had some trauma and that may have been repaired, or actually it may not. And it just looks to see if that ring of muscle is working well.

The other one is something called a proctogram, and there's two types. And a proctogram is where you put dye into the bottom. Sometimes there's dye in the vagina as well, and you might be asked to drink something to sort of highlight the small bowel, the internal organs. And then you sit in an X ray machine on a commode, it's all screened off, no one can see you. And effectively you're asked to get rid of the paste, as in try and do a poo of the paste in a commode and you look to see what's happening structurally with the different organs when that person's emptying. And sometimes you see a big rectocele and is it emptying fully or trapping? Sometimes there's no rectocele, sometimes there's an internal rectal prolapse or an interception, sometimes there's an external rectal prolapse, or sometimes it's completely normal. Obviously it's hard to relax. So occasionally people have this diagnosis of anismus, where they fail to just relax. And it's like, I don't know how relaxed you'd be sat on a toilet in a cold room.

Helen

I know I've heard about this before and I can imagine it is a really difficult thing to go through. But obviously for the right reasons.

Julie

I think by the time the ladies get there, then actually we've got a lovely radio set of radiologists who are very used to it and we've guided them through it and so said, look, you need this to make the next step.

Helen

Yeah

Julie:The weird one is, the MRI proctogram, because you have to lie flat in an MRI machine and try and do the same thing. And I don't know if you’ve ever

Helen

oh wow

Julie

...tried to do a poo lying flat? It’s not that good, but it's very good at looking at the organs of all of them, the pelvis put together. And then we basically take all of those investigations and maybe you might assess someone while they're asleep as well. And you sit down at a multidisciplinary team meeting or an MDT and you say, right, so you've met the patient. What is their symptoms? What is their story? What do they want from treatment? Because that's a really key factor. It doesn't matter what the tests say, it actually matters, well, what do you want from the treatment and what are their expectations? Then you put all the tests in, what their effective, conservative treatments? And you kind of say, what options are available?

Helen

When you say, what do they want from treatment? Because presumably everyone just says to be back to where I was before, right? What sort of things might you expect them to say?

Julie

Okay, so depending on your age and your physical mobility and your expectations, so you might turn and say, for a lady who's 60, 70, 80, 60 year olds might want to go, my mom's 60, she's still out dancing and doing fantastic things. So her expectations are as you or I, but someone who's 80 might just want to not be wearing a pad or a nappy.

Helen

Got you, okay.

Julie

And actually what they're more worried about is having any accidents or maybe they've got like a wound in their bottom end because they sit down too much, or they might want to go to the shops or very short things rather than going to work and going for a marathon or anything. And then it's also about how fit they are, because actually, some of these conditions happen in people who have got other things going on. So if you're big, that makes it more likely you're going to have problems. If you've got diabetes, then some of the conditions are more difficult to manage or you've got high risk of complications. So that can play a role in terms of what we might offer.

Helen

Okay, so next step after that, then.

Julie

Then we kind of say, so these are the options. Then we go back to the patient because that's really important. And you say, right...it's rarely a situation where you say, this is the only option I'm prepared to offer you. Sometimes it's actually the patient doesn't want any treatment. So you say what the options are and they go, I don't want that, or I don't want that yet, or is there a different option? And then you kind of go through and you have to kind of explain because the difficulty with this kind of surgery, it's not like cancer where you say, if you don't do this, you're going to die, because then you know there's complications and you're prepared to accept those complications.

Whereas if I say to you, say you've got a sphincter defect, so you've had a disruption to that ring of muscle and you're maybe three or four years after your birth, and you're managing okay, but you're struggling with some things and the treatment hasn't like the physio and everything hasn't got rid of completely, I might say. Well, okay, so I could offer you an operation where I try and join back that muscle. But actually there is a small risk that that muscle repair breaks down and you actually end up with a slightly larger hole. And you might develop a connection between your bottom and your vagina, which would mean that poo might come through that. Now, that's a very low risk. It might be one or 2%, but you don't have that risk. If you don't have anything.

Helen

Then I was going to ask you, kind of, what is the success levels? But I suppose it's not that simple, is it? Because again, it depends where you're starting from, where you want to get to. I mean, my only reference point personally is when in the very early stages of I'd had a third degree tear and the same appointment for that sort of three months after the baby was born. By that time I knew I also had a prolapse and the conversation seemed to be, surgery is an option, but it will likely only last for, I think, was it ten years maximum or something like that? And then you’ll have to do it again. Or conservative measures to manage it. And for me at that point, like ten years, and then having to think about doing something again before I tried these other things wasn't an option. So is that the same with most of these surgeries, that it's not going to be a cure-all that lasts forever and you are probably going to have to modify your life afterwards?

Julie

Yeah, I think to some extent, once you've had an injury, then you may never get back to normal or you may never get back to normal, forever. The difficulty...so if someone has a third degree tear, then you may be fine for ten years and then you might sort of hit perimenopausal type things and then you may start to develop some symptoms again.

Or actually, what we often find is people don't necessarily know they've had a third or four degree tear, they just know they had some stitches. But then they come to in their 50's and 60's and start coming with problems. So there are other alternatives that aren't quite so radical. So have you heard of neuromodulation or sacral neuromodulation? It used to be called sacral nerve stimulation and it was thought that it literally, you put a little electrode next to the sacral nerve, which and it was thought that it stimulated the pelvic floor. It's called neuromodulation now because we've got evidence that actually the signals from this go up to the brain and then come back down and actually it explains some of the effects because it doesn't just act on the pelvic floor, it acts on the gut. So the bowel has a nerve supply and it modulates some of those. So it's a good treatment for faecal incontinence. Bowel incontinence. It's not recommended in terms of NICE guidance for constipation, but there is suggestion that a group of patients may benefit from it as well. But it's not a big risk. There's a test phase which literally can be done under local anaesthetic and if it doesn't work, it doesn't work, but it can work in about 80% of patients.

Helen

That's amazing. These kind of developments, I guess, are happening all the time. How hopeful are you that there will be some sort of silver bullet surgery or treatment one day?

Julie

So there are two trials currently ongoing. There is one that's a commercial trial and there's another one that's a Horizon 2020, so a big European one. That are actually about taking cells, stem cells from muscle biopsies or growing them and putting them into the sphincter muscle into women. And I'm hoping that we might actually be able to be a centre for it. But yeah, the results are encouraging, but it's really, really early days.

Helen

I'm not even going to begin to start to try and understand how that works, but essentially kind of grow it growing more, healing yourself from within.

Julie

If that works, that'd be amazing.

Helen

You mentioned when we started talking about sometimes why it takes such a long time for women to come for help in the first place. Tell me a bit more about that. I mean, I think I've read somewhere that it's seven years before women even go to the doctor to talk about these sorts of problems, especially with faecal incontinence.

Julie

Yeah. So I think part of it is, it's so stigmatising. I think you talked about before a taboo within a taboo, and often people even struggle to tell their partners, so it can be difficult to admit it. And then when they do find somebody, they see a GP and they say this, and they may not say I'm having accidents, they might say, I've got diarrhoea. So the GP will send them in as an urgent suspected cancer with a change in bowel habit. And what will happen now is they'll either be sent for a colonoscopy, which is a camera test the bowel, or they'll be asked for a poo sample to see if there's any blood in it. And depending on what that shows, they might say, oh, you don't have cancer. Great. And then they'll be sent back and the woman goes, well, yeah, but I wasn't asking that, did I have cancer? What I was asking for is, can you help with my bowel problems? And then they might go, So you're going to now see to a routine colorectal clinic and that's like a two and a half year wait. And then you get to a colorectal clinic and you might see a consultant who either hasn't got an interest or doesn't really know, or the hospital might not have a service, or there might be a five year waiting list to see that person because there's such a big gap.

Or they see a trainee and if they see a trainee and the trainee, it's been two years, the trainee will go, oh, but it's been two years since you had a camera test and you might have cancer.

Helen

Oh no

Julie

I know somebody who had seven investigations of that in nine years. And it is awful, really awful. And it makes me cross. And a lot of it is about signposting clear patient pathways, training, education, and it's something I am strongly advocating and trying to encourage.

Helen

How do we change that, then? Is that about how medical students are trained in the first place, or GP’s?

Julie

I think there's two parts. One is educating women and men. So we're trying to sort of talk about whether we increase something within schools. A lot of the problems that start to develop happen in sort of teenage years, and then the other one is about educating not just the GP’s, it's the health visitors. So I did a talk for some health visitors a couple of years ago and after the talk on it, maybe about three or four of the health visitors came up and said, oh, I've got that. So if they think it's normal, how the hell are they supposed to tell women that it's not normal and they should seek help?

And then if you really want to get me angry, start talking about all these adverts, the pads adverts, where you have like an 'oops moment' and you go, c’est la vie. I mean, how is it c’est la vie to have an oops moment in someone wearing a white jumpsuit, looking in their twenties or you know a glamorous pair of pants that is a period pants, but is in fact incontinence underwear? Because just accept it. You shouldn't accept it.

Helen

I hear this so often from the women on my social media who will say, we're so tired of being told, yeah, you've had a baby, that's just what to expect now and then because no one talks about it. You go off thinking, Right, well, I never realised it was what I should expect, but obviously it is. So I'll just try and make the best of it while it makes me absolutely miserable.

Julie

Yeah, I think so. There are lots of good, well there's Facebook groups, there are charity things. So, again, so I'm one of the charity trustees for MASIC and the support groups from that. And I would say, if you're worried about your symptoms, find somebody to talk to. You will find that your mum, your sister, your friend, somebody will have had these symptoms and seek help. And don't be put off, don't just accept it, because if you meet someone who doesn't have the education, training or you haven't got a pathway in place, it is not right that you then say, okay, well, I'm going to put up with it. And there's a postcode lottery for services which is really..

Helen

Colorectal specifically or all of these things?

Julie

So I work in Wales. There's a slightly different funding stream, the way it works, but currently in Wales, ours is the only hospital where patients can access this sacral neuromodulation for faecal incontinence. So if a woman has a childbirth injury, she'll be able to see me in clinic, I can offer physiotherapy, she can see a dietitian, see a nurse, and then I can offer minimally invasive surgery that has a really good chance of working. Someone living 20 miles down the road can't access that service. And how is that right? And I think we just need to get up in arms and actually demand equal rights for this. And speak to your minister, speak to your local politician.

Helen

Get the same offering available in every area. Because tell me about the centres that you've pulled together somewhere. These are multidisciplinary centres where people can go and be seen by all the specialists at once.

Julie

Yeah, I'm not the only one doing this. There's plenty of places, but essentially what we've tried to do is bring together in a pelvic health hub all of the people that we think are relevant. So we've got pain specialists, we've got urogynecologists, we've got nurses that do pessaries, we've got nurses that deliver irrigation for washing out the bowel. We've got myself. And the idea is not necessarily that we see all the patients at the same time because that's not necessarily feasible. But sometimes if I think I want an opinion from a urogynecologist and he's doing a clinic next to me, then instead of me writing a letter, taking six months to see the patient, then writing back to me, me taking another six months to the patient, he pops his head in, has a look, and we have a chat. And then that's, saved a year of that patient's treatment.

Helen

I've taken up far too much of your time, I suppose, just if you have any final thoughts about I know we've sort of said it's not working, the system is not working properly at the moment. And what women in particular who have these problems can do to advocate for themselves and make sure that they don't end up stuck in the system or in the wrong office.

Julie

I think essentially, people need to know what's normal. That's the key thing. Because if you know what's normal, you know when to look for help and then think about because there is a lot you can do yourself. As in, look at your diet, look at your lifestyle, look at your exercise. Physiotherapy is fantastic. It isn't the answer to everything. And you may get some improvement with physio, but if it's not better or it's not in a good place for you, then do continue to seek help. And also be aware of the fact that things change. So whilst you may have had a bit of an issue and got better, just be aware that as we get older, things change again. So just keep an eye on it. Stay healthy, try not smoke, lose some weight, walk, eat good foods. All the stuff we don't do but we try to

Helen

Move to Wales See Dr Cornish.

Julie

Yeah, I'm Mrs. Cornish because I'm a surgeon. I don't use doctor.

Helen

Oh, right. Well, I did wonder that because I have also seen Mr. And Mrs. And I'm like, Why? Why would you not call yourself a doctor if you've gone through all that training? But okay.

Julie

So essentially, surgeons weren't doctors. They were barbers.

Helen:

Oh God, this is getting even more confusing. What?

Julie

They were considered inferior, so they weren't given the title of doctor.

Helen

Wow. Okay.

Julie

And then actually, when surgery was considered part of medicine, then actually the surgeons weren't, well, we don't want to be doctors anymore. We're better than that. So as soon as you get your first surgical exam, you lose well, you gain your name before UK is the only country that does that. In every other country, surgeons are called doctor.

Helen

So confusing. Right, Mrs Cornish, thank you very much.

Tell me I'm not the only one who didn't know that! I learned so much from that chat. Clearly, there's still a lot of work to do, but it's great to know that there are new treatments coming down the line and obviously, doctors who really get it and want to help. Mrs. Cornish is on Twitter as Jules underscore Cornish. By the way, I'll put some of the apps and things she mentioned in the show notes, and I'm hoping to speak to a very nice Urogynaecologist in the not too distant future. So if you have questions for her, let me know. As ever, none of this is intended as medical advice.

Next week, it's the ultra runner Sophie Power on returning to running when you have pelvic floor problems. And when I say running, I mean serious running. In the meantime, please help to share the podcast. Maybe write a review if you can. It all helps to spread the word. You can support the podcast on Buymeacoffee.com/whymumsdontjump. And it can be completely anonymous if you prefer and you can find me on social @whymumsdontjump or online at whymumsdontjump.com. Bye for now.