Podcast: Pregnancy Sickness & Hyperemesis Gravidarum with Guest, Dr Caitlin Dean

Pregnancy Sickness & Hyperemesis Gravidarum with Guest, Dr Caitlin Dean

Season 3, Episode 9

Pregnancy Sickness is often a welcome and exciting sign of early pregnancy. But knowing what is 'normal' and what's NOT can be hard to navigate.

In today's episode I am joined by Dr Caitlin Dean, Nurse Specialist Researcher into HG & Chairperson of the charity Pregnancy Sickness Support. Caitlin & I have worked together on many contexts over the years and this topic is one very close to my heart, having suffered with HG twice myself.

In this episode we explore:

What's the difference between 'morning sickness' and 'hyperemesis' 

What treatments & medication are available & their safety

What are some of the common side effects of HG or the medications used to treat it.

The common barriers to care How to advocate for yourself/your partner

Where to turn to for support

How HG impact mental health

How to prepare for a second HG pregnancy

Do share with anyone that you need to understand what your pregnancy sickness experience was like!

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TRANSCRIPT

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Let's go.

Hi, everyone.

Welcome back to The birth-ed podcast.

In this episode, we are going to be taking a deeper look into pregnancy sickness and the wildly misunderstood condition of hyperemesis gravidarum.

Of all the episodes we've recorded, this one sits very close to my heart, having experienced severe hyperemesis in both of my own pregnancies.

I'm joined today by Dr.

Caitlin Dean, who is a nurse specializing in HG, chairperson of the charity Pregnancy Sickness Support, researcher, author and holds her PhD in hyperemesis gravidarum research, as well as being a three-time HG survivor herself and someone whose work I am grateful for, not just in a professional sense but on a personal level too.

So Caitlin, thank you so much for chatting with me today.

You're very welcome.

Welcome.

So I suppose a probably a good place to start would be, what is normal in terms of pregnancy sickness?

Yeah, so, I mean, everyone's heard of the concept of morning sickness.

And whilst it's a really useless term because it often is not in the morning and that you could occur at any time of the day or night.

It is common and normal to feel a bit sick in early pregnancy.

For a lot of people, it's the first signs that they are pregnant.

And it's often a bit of a welcome sensation because it shows, assuming the pregnancy was planned, it shows that things are happening and progressing as they should.

It's considered a bit of a rite of passage.

And if you were looking forward to pregnancy, it's very much part and parcel of it.

But what normal is, is waves of nausea that come and go and possibly the occasional vomiting.

It's not much fun to feel sick at all, but it doesn't normally bother people that much because it just comes and goes, and you know that you're growing a baby, and so you feel sick for a good reason.

And it doesn't stop you from eating and drinking.

Normally, it might not feel like eating when you actually feel sick, but then that sensation will pass, and you can eat a reasonable meal.

And again, it's normal to lose weight a little bit in the start of pregnancy, partly because of feeling a bit sick, but also because most of us, once we are trying to have a baby or an early pregnancy, start eating very healthily.

You know, you cut out alcohol, you might cut out your lattes and things like that, and so, you know, start being generally more healthy, and therefore it's quite normal to lose a little bit of weight.

But obviously, high premises is not normal.

Yeah, so what is the difference then between like normal pregnancy sickness and when actually you should start to feel a bit more concerned?

So when the symptoms are reaching the point where they're actually affecting your ability to sort of function daily, and you're feeling sick all the time, and when you're feeling sick, it's very severe sickness, nausea is a bit like pain, where you can have like a mild discomfort, that would be sort of normal, or you can have absolutely excruciating agony, and nausea is like that, it can be a bit of a mild discomfort sensation, or it could be so severe, that it literally feels like your entire body and every cell in it has been poisoned, and that's very much hyperevesis, and you can't think of anything other than this crippling nausea, I'm going to read some of the names, and I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

So, I think we'll get to them in a bit.

And to look after your children and to be in the kitchen or anything else, and to be in the kitchen or anything else, and to be in the kitchen or anything else, then that's not normal.

That's not a normal part of pregnancy.

If it were, I doubt very much the human race would have survived.

So, if what you were expecting is not as bad as what you're experiencing, then you're probably on the way towards the severe end of the spectrum, the severe end of the spectrum, because we all expect a bit of sickness.

Yeah.

And so, I know for a long time that one of the kind of difficulties with hyperemesis was that there wasn't like an official diagnosis.

Does this exist yet?

Do we have a way of diagnosing HD?

Or how is it diagnosed if there isn't like an official criteria?

Yeah, so it is a tricky one.

And there has been a recent development with an internationally agreed definition.

Now, that's very much for sort of research purposes, so that we can, when research studies are recruiting people to it, we all are sort of using the same criteria, because that then allows you to kind of pull research.

But it's also, it is a good clinical definition as well.

So in the past, it's been things like weight loss of more than 5%, needing, having electrolyte imbalances in your blood results, signs of dehydration and malnutrition, and things like that.

And they've used really inappropriate tests such as ketones, which I don't know whether you're going to ask me about that later.

We can talk about that in more depth, definitely.

So we've used things like that.

The new definition is much more patient focused.

So it's about when, when you're, if symptoms are so severe that you're not eating and drinking normally, and it's really affecting your ability to function, then we should define it as hyperemesis.

Where on that spectrum we actually have a diagnosis, perhaps isn't necessarily that necessary to be hard and fast for, because people's lives are very different, and it's often about the context of those lives.

So for someone whose symptoms are bad enough that they can't go to work, and that means that they can't pay their rent or their mortgage and their bills, and that's really a massive problem.

They would have maybe a lower threshold for needing to go, okay, this is high premises, and we need to get on with treatment.

Whereas someone who actually is financially comfortable and they can take time off work and just rest at home, it may be less important to have that diagnosis and to crack on with treatment.

So we try not to be too hard and fast.

This exactly is high premises and that isn't.

Different people have different experiences of it, and the symptoms can be different.

So one person may be throwing up a vast amount, but the nausea isn't so bad, and in between vomiting, they're able to eat and drink, and someone else might have such crippling nausea, but without actually vomiting, but they're actually more dehydrated and losing more weight than the other person.

So there's no need to be kind of comparing amongst ourselves, if you see what I mean.

But it is useful to have a definition, and basically if it's really affecting your life and your ability to function, then it's reasonable to have a diagnosis of this isn't normal, therefore it's hyperemesis.

I think that's just a really helpful clarification for people to hear, because sometimes when people aren't being sick, they go, you know, well, I can't have hyperemesis because I'm not being sick.

And actually, I know certainly from my experience, I was being sick a lot, but the thing that was much harder to deal with was actually the relentless, like never-ending nausea that you couldn't get relief from.

So hopefully that will kind of validate some people's experiences of knowing that actually that is a really incredibly difficult thing to manage and to face.

So if somebody is listening and they're in that position or they're supporting someone or they think actually that was me in my kind of previous pregnancy, when we talk about kind of accessing treatment and support from the UK perspective, where are we going for that?

So I would hope that you come to Pregnancy Sickness Support.

We have a helpline and there's various ways of contacting through that.

So there's a way you don't have to actually speak.

If you're not able to speak, you can use the web chat or WhatsApp or come sort of via the social media streams.

We can provide information about treatments, services in your particular area, and we can provide peer support to help you get through what is a really horrific condition and is often very misunderstood.

So yeah, we're the sort of port of call.

So if you're struggling with symptoms, equally, you know, it is sensible you should go to your GP, speak to your midwife, your local hospital.

But some people are met, sadly, sometimes you are still met with slightly dismissive attitudes, assumptions that this is normal and that you're just, you know, not coping with a normal part of pregnancy.

And by no means is that across the country.

There are lots of very proactive GPs and midwives who know a lot about hyperevesis and are very willing and able to treat.

But unfortunately, there is still some stigma and misnomer around the condition.

And so if you are met with that, then if you get in touch with the charity, we can help you find treatment that is going to be more forthcoming.

Yeah, absolutely.

And it does seem to just be so hit and miss depending on where you are.

Even like different GPs within the same surgery can offer completely different opinions or levels of support.

And that access to decent support is like a game changer, isn't it?

Two pregnancies had one where it was very dismissed and misunderstood, and at which point I didn't know about the charity.

And then in the second pregnancy, with the support of the charity and knowing who to ask and what to ask for, ended up with really, really fantastic care.

And in terms of kind of, I mean, both still completely hellish, but in terms of kind of managing emotionally and being believed and stuff makes such, such, such a huge difference.

So let's chat about, say you have attended the GP and you're kind of in the process of discussing sort of treatment options.

Can we discuss what those are, the pros and cons of them?

Let's kind of start with the very, very low level things that even friends and family might suggest on the kind of natural remedies like ginger, acupuncture, eating little and often, like the kind of well-known recommendations for pregnancy sickness.

Yeah, so, okay, with those sort of things, I mean, a bit of mild pregnancy sickness may well be helped by possibly ginger, although I think the evidence is really bad, and acupressure bands and things like that.

They certainly, for mild pregnancy sickness, they're not going to do any harm.

So whether or not they help, at least you sort of feel proactive, and certainly you'll have friends and family asking if you've tried them.

Eating little and often does have good evidence.

That's not to say, so even quite recently I read in a research protocol that they were going to give the advice about eating little and often so that they avoid overeating with full meals.

And I was like, no, that's not what they're doing.

The point is to not let their stomach get empty.

The issue is not that they're like pigging out with great big meals and then feeling sick afterwards.

The issue is that if you let your stomach get empty, then you might increase the nausea can increase with that, which is why often when you wake up in the morning, it can feel worse because your stomach is empty.

So there is some good evidence that if you could constantly graze, so your stomach doesn't get completely empty, that can really help with the nausea.

And obviously, don't be eating great big meals, but equally, if you do, you've probably got a problem.

So eating small amounts, like spreading a piece of toast, nibbling it so that it lasts 20 minutes, half an hour.

And constantly nibbling on biscuits and dry stuff like that, so that your stomach isn't empty, that can help.

Once you get up into the realms of hyperemesis, things like trying ginger is likely to make it worse.

It's a very unpleasant substance to throw up.

The idea that there's enough ginger in ginger biscuits is nonsense.

The actual biscuit might help, a bit of a sugary biscuit.

But often there isn't even any ginger in them.

They're ginger-flavoured.

So there's some evidence around taking ginger capsules, but they can be quite repetitive and cause acid reflux.

Ginger is quite an unpleasant substance to throw up.

But you do need to be prepared mentally for the fact that anyone and everyone will suggest it to you.

And it emotionally feels like a kick in the stomach, doesn't it?

It really does.

You have no idea.

Yeah.

I mean, if ginger could help, then I wouldn't need this IV drip and these strong medications.

And if I could help myself by wearing seed bands or trying acupuncture or something like that, then I really, really would.

But those things don't really work.

So, you know, by all means, try them.

And I mean, I certainly wore seed bands throughout all three of my pregnancies, in part because there was sort of an implication that if I wasn't wearing them, that I wasn't trying hard enough to help myself.

And so by wearing them and people questioning what I tried and what I hadn't tried, I could say, look, I've tried it all.

And yes, I do need this actual medication.

So moving on to that, and also it's important to remember that things like ginger did still exist back in the days when women died.

So if it worked, we wouldn't have hyperemesis.

None of us would be suffering with it if it was as simple as having a bit of ginger and wearing some sea bands.

So in terms of medications, once you get into the realms of hyperemesis is actually stopping you from being able to eat and drink normally and you're losing some weight, which is really not okay in the first trimester.

A small amount is not too bad, but if you get to the point of you're actually losing quite a lot of weight, then there's good evidence that that's not good for the baby.

And obviously it's not good for you either to be losing weight through malnutrition as opposed to a sort of healthy balanced diet.

So the first slide medications, we've got a drug license in this country called Zonvia.

It is licensed for nausea and vomiting in pregnancy.

How efficient it is against HG is slightly out for debate.

It's meant as a first line.

And almost it's the kind of thing where if you try that and it doesn't work, then that's HG.

But if it does work and it gets your symptoms under control, then you had moderate to severe nausea and vomiting in pregnancy.

The problem with accessing it is that it's not on a lot of formularies.

A lot of GPs haven't heard about it.

Because it's got a new name in this country.

So it's been used in Canada for well over 20 years under a name called Declectin and in America it's been called Decleges for well over a decade now.

And it's used across Europe.

It's called Caraban in Spain and in Ireland.

And it's got other names.

It's basically an old fashioned antihistamine called Doxamine.

And it's got a B6 in it and it's got a slow release.

Because it's got a new name in the UK, some doctors think it's new, but it's not.

It's actually one of our older treatments.

So it's not available in a lot of pharmacies, so it can be difficult to get.

You should be able to get it by private prescription, but then it's very expensive.

And actually, it's really not that different to another medication called Cytosine, which would be our first line in this country mostly.

So Cytosine is a similar antihistamine, but it's not slow release, and it doesn't have the B6 vitamin in as well.

And so possibly it's not as effective because of those reasons, but it's still pretty good first line.

And for a lot of people, that will help get back on top of it, keep them hydrated.

When those things don't work, there are other steps you can move on to.

So there's medications such as propoperazine, which is known as stematil or bucka stem.

You can add that in to cyclozine or Zombia if they're not controlling symptoms enough.

And then you can move on to it to ones called ondansetron.

It's probably our most effective medication, but that can give side effects of constipation.

Some GPs could be reluctant with that because it historically was quite expensive, although now it's not particularly expensive if they don't use the brand name.

And there's some controversy over an association with an additional 3 in 10,000 oral thefts.

However, my view on that is that it's more likely to be that the population studied there that had been exposed to ondansetron in the first trimester were also people who were malnourished and lacking in folic acid and B vitamins.

And that's probably why you see a slight increase in oral clefts in that population.

It's because of the condition rather than the medication, because people who need ondansetron are generally quite unwell.

So that's very frustrating because it's caused some controversy and people seem to have this wrong idea that it's been banned in the first trimester, which it hasn't.

And just to put that in perspective as well with the oral cleft, the baseline population in just a normal, healthy population, you'll see around 11 in 10,000 oral clefts in babies born to just the population generally.

And in the population who are taken ondansetron in pregnancy, there was 14 in 10,000 oral clefts in the babies.

So it's so minuscule, and even if you took ondansetron in the first trimester, and your baby had an oral cleft, 11 out of the 14 would have anyway.

So it's important to keep that in perspective.

To me, that research was incredibly reassuring.

It showed that there was no association with any heart problems or any other developmental problems.

And to me, three in 10,000 oral clefts was really reassuring.

Because also if you don't take ondansetron and you're very, very unwell and you're not eating and drinking, then you can increase the risk of other problems like autistic spectrum disorders, cardiometabolic disorders later in life, such as diabetes and things like this, when your child grows up into adulthood, from being exposed to malnutrition.

So the most important thing is to go, do you know what, if these medications mean that I can eat and drink and give my baby the nutrition that it needs to grow and develop, then that is safer than not taking them and being starving and malnourished and losing vitamins and putting myself and my baby at risk.

But it's hard because in society there's a stigma around taking medication in pregnancy.

Partly that's because of the historic devastation of thalidomide, which was a drug prescribed in the 50s and 60s and caused very horrific malformations and was really devastating.

But there's never been anything like that since, and now the vigilance and the monitoring of medications, thanks to that, is really, really careful and it's almost impossible for such a severe incident to happen again.

And certainly all the medications we use for high premises have been around for decades, and there's no suggestion that they cause these problems.

Yeah, I think that's really reassuring, because that is often people's kind of immediate concern, is even if they get the prescription, sometimes they're like, oh, I'm not going to take it because they're worried about that particular kind of history.

So just knowing that actually, you know, women have been taking these medications for a long time and that they've been shown to be safe.

Yeah, they've never found any.

Apart from this 3 in 10,000-dollar class, which to me is not even, you know, they weren't able to rule out confounders or other things that could account for those results.

And like I say, the population being prescribed on Danzotron, and in this study, it was all because of pregnancy sickness.

So the vast majority of the people in that study were likely to be malnourished and dehydrated and lacking vitamins, and they weren't able to keep down their folic acid.

You know, not taking folic acid is also associated with an increase in oral cleft.

So taking the on Danzotron means that you can take folic acid.

You're sort of counteracting that possible association with an oral cleft.

And also, you know, we've had it where women have been encouraged to terminate their baby instead of taking on Danzotron.

And from the baby's point of view, you know, if I was that baby, I'd be like, Mom, can you take the on Danzotron, please?

Because termination is really a bad outcome for the baby.

And an oral cleft, although I don't want to devalue the experience for people whose babies are sadly born with an oral cleft, it is fundamentally fixable.

Certainly in Western countries.

And whereas some of the other problems from the malnutrition, like autistic spectrum disorders and things like that, are less.

So, yeah, from my point of view, from a risk benefit point of view, the taking medications is safer than not.

Yeah.

And so just going on to the, I suppose, the final line, this is something that I took in my second pregnancy, that I probably should have taken in my first.

But the use of steroids in pregnancy, is that is that kind of our top line?

Yeah, it is.

So if you're on a combination of other medications, like, for example, cyclosine and stematil and londoncetron, and it's still not controlling symptoms enough, then the final line of medication that we have is steroids.

They're used in pregnancy for lots of other reasons.

Crohn's disease, lupus, all sorts of stuff.

And actually, in some countries, they're still given, even if you're just having IVF, not so much now because it wasn't found to be particularly effective, rather than any suggestion of danger.

I think there is, again, a similar association with a possible oral cleft, but it's such a minuscule risk that if you're that unwell that you're needing them, then clearly the benefits are outweigh the risks.

The problem with steroids and the reason that they are sort of last line and that we don't give them sort of that freely early on without trying other stuff, is that steroids are quite a powerful class of medication generally.

And the earlier you start them, the longer you're likely to need them.

And actually, long-term steroids isn't great for us generally.

So, steroids tend to be given whether you're pregnant or not in as short a course as needed until things are under control.

Now, if you can wait until sort of 10, 12 weeks and then you take steroids and hopefully you can get on top of things and you can wean off them.

And if you're on them for sort of four, five, six weeks, that's really not considered long-term.

But if you start them early in the first trimester and you're still on them towards the end of pregnancy, then that is kind of getting into the realms of long-term steroid treatment.

And then you have problems with that you have whether you're pregnant or not.

There are problems with taking steroids long-term.

So your skin can become thin and you can get these conditions called there's addicents you get, your face sort of changes shape.

And you can have problems which should be reversible when you stop the steroids.

But it is why we're a little bit more cautious with that because you don't really want to be on steroids for any length of time whether or not you're pregnant.

But if you need them to maintain the pregnancy, then still the benefits are going to outweigh the risks.

And if that's what's needed, then that's what's needed.

And your alternative is presumably to end the pregnancy.

But yeah, we do tend to be a bit more cautious with them because you don't really want to be on them for any length of time.

Amazing.

Thank you.

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And so these medications then will sometimes go hand in hand with either kind of day-to-day hospital admissions or kind of longer stints spent in hospital to treat in particular, I suppose, dehydration.

Can you chat a bit about what that experience would look like?

So either you'd been to your GP and they had identified signs of dehydration that weren't going to be fixed just by drinking some water or if it was in kind of more severe cases, you might have gone in through A&E or through your early pregnancy unit.

What's involved in terms of getting somebody back to being rehydrated?

Yeah, and it's a bit frustrating because all of those routes, it does depend very much where you are in the country, the staff in those units, the GP you see, and what's available.

And in some areas, you're going to go to your GP, get referred to the early pregnancy unit, get in there in a reasonable time, not have to wait around, have bags of fluids put up, two or three bags, two or three litres, or even four litres over however many hours.

And then you go home and you feel like you can keep on top of it because you've been rehydrated.

Sadly, in other areas, it may be more of a case of you end up going through A&E, you have to wait five hours.

They insist on you providing a urine sample to check for ketones, which is complete nonsense.

And it's a real battle to even get fluids.

And, you know, unfortunately, it is slightly hit and miss around the country, and even on, you know, the particular doctor you see in whichever department.

So I can't really give a typical idea of what that experience is.

For a lot of women, it's a frustrating, tedious experience, where you just feel not believed and not listened to.

And you know that if you were a man, and you were coming in with a vomiting condition, this severe, these signs of dehydration and malnutrition, you'd probably have a drip on you within 10 minutes.

But unfortunately, we're not, we're women, and in pregnancy, we're as womanly as we get.

And so, you know, you have to kind of prove your illness before you get treatment.

But yeah, I mean, really, you know, if you're very dehydrated, you need some IV fluids, and that gets you back up to a reasonable level of hydration, which hopefully you can then maintain with oral fluids.

Because dehydration is a bit of a, it's frustrating, because it's a bit of a self-prolificing circle in that nausea and vomiting are symptoms of dehydration.

So the more dehydrated you get, the more worse the symptoms of nausea and vomiting, which then makes the dehydration worse.

So getting some fluids can kind of break that cycle, hopefully.

So talk to me about what are the symptoms of dehydration?

And if you want, you can touch on ketones.

And what are ketones?

And how did they become a part of this conversation?

Yes, very good question.

So, I mean, signs of dehydration are things like the dry mouth, dry mucous membranes, not weeing enough, weeing very small amounts, your skin seeming dry and not being, not sort of springing back and things like that.

Ketones are a by-product of your body breaking down fat stores.

If you don't have enough carbohydrate in your diet, your body will start to burn its reserves from body fat.

And then as a by-product of that, you produce ketones, which you can, which you expel through urine and health care professionals can use a little dipstick and they can see if there's ketones present in your urine.

Ketones are similar to acetone that we use as nail varnish remover.

It's not a great thing for you to be having whirling through your body, but equally, it's also not that big a deal either unless it becomes very severe.

And just to be clear, I'm talking only about ketones in relation to hyperemesis.

Ketones have a different meaning when it comes to diabetes.

And I'm not referring to that at all.

I'm only specifically talking about them in relation to hyperemesis.

So unfortunately, for the last however many decades, ketones have been something that healthcare professionals have loved to test for people with hyperemesis as a sort of, let's see if she's really that ill.

You know, she tells me that she hasn't eaten or drank for a couple of days, but we better check her ketones to make sure that she's telling the truth or some sort of bizarre nonsense like that.

The problem is they've got nothing to do with dehydration and they're not really a very good marker of malnutrition either.

So if you're someone who's had dinner, gone to bed and not eaten breakfast in the morning and you go off to work, if you were to take your ketones at that point having skipped breakfast, you may well have ketones in your urine because you skipped breakfast.

That doesn't mean you're malnourished or suffering with hyperemesis.

It just means you skipped breakfast.

People know a bit about ketones because of the whole keto diet where you just eat meat and you cut out all carbohydrate and you're going to produce ketones for weight loss.

But equally, you could be really quite malnourished and starving, but what you have managed to eat is a couple of biscuits and maybe some leukazade, which is very sugary and so on.

If you don't have enough ketones, you're not going to get rehydrated, which is ridiculous.

They've also been shown by systematic review, which is our highest level of medical evidence, that they're not associated with the severity of hyperemesis.

You can have people with relatively mild symptoms that do have ketones, and you can have people with very severe hyperemesis who don't have ketones.

It's just a really bad thing to even be testing because it leads healthcare staff to make bad judgment calls.

So we really try to discourage them from even monitoring them at all.

But it's an uphill battle, and we're by no means there yet.

Yeah, and I see you even hear from women that are so severely dehydrated that they cannot provide a urine sample, and then because they can't provide the urine sample, they get told that they have to go away because they can't prove that there's ketones there.

Yeah, and to me, that's a death waiting to happen, that someone's going to die from that.

I mean, you know, that's really not okay, but people just get really hung up on the ketones.

And to be honest, even looking through the historic medical literature, we've never quite figured out why they've become so synonymous with hyperemesis, other than this idea that, you know, you have to prove that you're actually ill.

There's no other medical condition where a nurse or a doctor was thinking, hmm, do we need to get, is this patient dehydrated?

Should we give them a bag of IV fluids?

I know, let's check their ketones.

Nothing.

There's no other medical conditions where you would use ketones to decide whether to give a bag of IV fluids.

Yeah, for hyperemesis, it's like almost critical in some guidelines.

Yeah, that is mad.

And I'm sure lots of people would be like listening and nodding along being like, but that's what happened to me.

And so it should wholly be based on the symptoms that they have and the symptoms that they are reporting.

Yes.

Yeah, it should.

Yeah.

And I don't know why we can't just believe women when they say, I've only kept down, I don't know, 100ml of fluid or, you know, I haven't passed urine for the last 24 hours or something.

I mean, yeah, but for whatever reason, women with this condition are often sort of not believed.

So kind of as part of what those symptoms are, I thought something that might be quite helpful and quite validating for people that have experienced hyperemesis is to just chat through some of like the other things that people experience alongside nausea and vomiting.

Either as side effects of their medication or to do with the state that their body is now in, which can feel quite humiliating, quite embarrassing, and even amongst kind of, you often don't hear about them until you're speaking to other people that have had hyperemesis, and then you suddenly go, Yeah, I couldn't stop spitting for nine months or I had awful hemorrhoids and an impacted bowel or whatever it is.

There's a lot of stuff that kind of goes alongside, isn't there?

Yeah, there very much is and you touched on one of them then.

So, tyalism is excessive salivation.

So, your mouth is constantly producing saliva and it's difficult to swallow because you're not managing to swallow anything and you throw it up if you do.

And so, women find that they end up having to sort of spit constantly or have a towel to kind of constantly dry their mouth with.

And I think it's to do with that, when you're very nauseous and just before you throw up, your body produces saliva to sort of lubricate the passage of the stuff you're going to throw up back out of your mouth.

In the same way it produces saliva when you're eating to help swallow the food.

And I think it's a bit like that, like biologically, you're sort of constantly on the cusp of throwing up.

And so you're constantly producing this extra saliva, which obviously increases dehydration, so you're losing body fluid through it.

But it's also horrific.

I mean, it's distressing and it's gross.

And, you know, women, even if they are feeling a bit better and would like to get out of the house, they're aware that they're going to be constantly spitting in a cup or needing a towel to dry their mouth.

So that can be really distressing and really horrible for people.

Also, the sense of smell thing is quite dramatic.

So it's, again, normal for your sense of smell to increase with pregnancy, probably an evolutionary mechanism to protect us from things that are bad and to, you know, just increase our sensitivity to danger.

But with hyperemesis, not only is your sense of smell massively increased, but it's warped as well.

So things that normally would smell nice to you smell really horrific.

And that can include your other children, your husband, your bedsheets, tap water, your own skin, like everything.

Yeah.

And it sounds completely ridiculous, doesn't it?

But I used to have, when I was pregnant second time, would have to tell my husband to wash our child's hair any time he was going to come and visit me.

I was living with my parents, but I couldn't smell his hair unless it was like freshly, freshly cleaned, which is like, yeah, it's not a nice thing to do.

It's very lonely when you have to isolate yourself from smells.

My husband at times, we'd have to sleep in a spare room because of the smell of him.

And I mean, we spoke to my son's nursery in my second pregnancy, because if he'd had garlic in his food at lunchtime, I couldn't see him.

I couldn't, he couldn't come near me.

I could smell him almost the moment he walked in the door.

And that's awful for the smell of your other toddler to make you sick.

And they become aware of that, that, you know, that couple with mum made her more sick.

And those smells can last, I suppose, and not, it certainly hasn't lasted for me with my little boy, thankfully.

But some of those smell triggers and general triggers for sickness, these can last like long, long after the pregnancy.

There's a smell that our kitchen gets when the sun comes out, and I cannot go in our kitchen even now after when the sun comes out because of that.

Yeah, yeah, exactly.

My eldest is 14 next week, so it's nearly 15 years since I got pregnant with him.

It'll be next summer.

And I can't have Earl Grey tea.

I just can't.

I threw it up out my nose that many times.

Just the smell of it is just traumatizing.

And yeah, I know people who have ended up moving house because the house is so triggering and sold their car and got a different one because the car was so triggering.

So, yeah, smell is quite an emotive thing.

It brings memories very easily.

And so, yeah, bad smells can be quite like long term traumatizing and triggering memories.

In terms of other side symptoms and side effects, the other one that can be really horrific for women and isn't really talked about very much is once you're into sort of the second or third trimester, if you vomit, you might find that you wet your pants.

Because obviously, you've got relaxing in your body to help the pregnancy grow and to, you know, all your ligaments and stuff to be able to stretch and grow.

And that can also have a relaxing effect on your bladder control.

And when you're being sort of quite violently sick, that can happen.

So that's something that could be really sort of embarrassing and just dehumanizing.

With, I mean, when you're dehydrated and malnourished, constipation is common anyway.

And with pregnancy, it's common.

But also, if you take on Danzotron, it can be, it can cause really bad constipation.

So that's something that can happen and it's worth being aware of.

And that can be like, I know for me, it was incredibly severe to the point that it impacted bowel level of constipation.

And I think up until that, I'd sort of heard of constipation.

I just thought that any experience in my life of constipation up until that point was like, it was just a bit hard to go for a poo and maybe the poo wasn't that soft.

And so it might be that, but it can actually be, you're going weak without opening your bowels.

And I think the helpful thing to know is that there is treatment for that.

Yes, and it's important that you do get treatment.

I mean, people sometimes underappreciate how serious constipation can be if it's properly, if you're properly impacted and it's not okay for that poo to stay inside you, it needs to come out.

And so there are treatments, you know, that you need to ask for help for and get really relief from from that.

So yeah, there's all yeah, I mean, it's just a horrible condition that's like so much that it's just, you know, the sense sensory sort of being hypersensitive to all sensory stimulation where, you know, the the blowing of your curtain in the breeze can cause flickering lights which trigger sickness and all of this stuff, it can be difficult to watch TV or read or do anything really.

That is a difficult thing, I think, is that, you know, there's an assumption of like, okay, well you're ill, you can just lay in bed, watch Netflix, sit on WhatsApp, and it's like, no, no, you literally can't open your eyes, like it's that level of illness.

And so that probably leads us on nicely to the kind of, I suppose, emotional impact of hyperemesis, which again, probably, definitely in my experience is probably the most overlooked aspect of care.

Some of the kind of thoughts that people have, or that I certainly had when you're suffering with hyperemesis, people have suicidal thoughts, kind of hating their baby thoughts.

And these, you know, when you speak to people that have been through HG, you go, okay, it wasn't just me that was feeling this way.

And so, you know, what do we know about the emotional impacts of hyperemesis?

Yeah, I mean, I don't know why it's so hard for people to imagine that such a severe, horrific condition is going to take a toll on your mental health.

But for some reason, it is often overlooked, as you say.

And the reality is, is that it's an incredibly lonely, isolating, depressing condition.

At a time in your life, which prior to pregnancy, you imagine to be glowing and fun and exciting.

And, you know, you sort of looking forward to shopping for the baby and having a baby shower and all of this stuff and enjoying the whole experience of this sort of incredible thing of growing a baby in your body.

And so when you get struck with HG, there's this devastation over the fact that what you thought was going to be a nice period of your life is actually a horrific battle.

You may be off work for some time and just bed bound with it.

And that gets lonely very, very quickly.

I suspect that there's possibly more empathy in the world now for the concept of social isolation than there was a couple of years ago, because actually we all have most almost everyone has now had the experience of needing to isolate for up to 10 days with COVID and so on.

Now that 10 days, imagine that being, you know, seven, eight months, even just a few weeks is just awful.

And not only are you isolated, but you feel horrific, and you're struggling with those symptoms.

And social isolation is a major factor in suicides, and with pregnancy sickness, it starts early in the pregnancy, go right on through, and even after you've had the baby.

And you're suffering with a condition which is being dismissed as normal, and you should be happy about, and all of these things.

So it's really no wonder that it takes its toll on people, because it is a really awful condition and you feel like you're dying, because you sort of are.

I mean, before we had modern medicine and IV fluids, it was the leading cause of death in early pregnancy, because we couldn't stop people dying from it.

The only real solution was, in very severe cases, to provide an abortion, which by that stage often killed the woman anyway.

So it is really awful and there can be a mental toll on your partner who has to watch you suffer like this and is scared also that you might die and things like that.

There's the idea that I'm never going to be able to do this again, therefore I can't have the babies that I want so there could be grieving for babies that you wanted to have but will never be able to have, similar to if you had infertility issues.

People do terminate for this and the grief and loss experienced for that is often similar to that experienced with the termination for fetal abnormalities because this was a wanted tried for baby more often than not and often when people terminate for it, they realize afterwards that actually hadn't been offered all of those treatments available or have been given suboptimal doses or just hadn't been supported in the way they should have been supported in order to get through the pregnancy.

So post-traumatic stress disorder can be common afterwards and it's really important you reach out for help with these things.

There is support available, perinatal mental health services vary around the country, but they are out there and certainly pregnancy sickness support can provide support with that as well.

We're hoping to set up an actual counseling service in-house as well so that people can get, you know, talking therapy to help them cope with this awful life experience and this disruption to their life and what they imagined pregnancy being, which could be really devastating mentally.

I think that will be such a valuable thing when it exists because I certainly know from kind of my own experience, I sort of did reach out for that mental health support, but if you're speaking to somebody that doesn't know what type of remises is, again, it can be very hit and miss and that kind of feeling like you have to constantly explain or educate to people and then have also experienced kind of the slightly more specialist HG counselling.

Just the, again, the believability and on all of that, it just makes such a difference.

Yeah, validation.

But and also the peer support service through the charity is like, just sometimes just speaking to somebody that you can say, like, today, I told my baby that I hate it and them not to go, oh, God, and like them to be like, yeah, I said that.

I think it's that it is that validation and that that kind of just having somebody that gets it can make such a difference to the kind of emotional experience.

And as you mentioned, kind of recognizing that just because the baby's been born, that doesn't mean that the emotional toll is now over, and you're kind of back to it.

But this can go on to impact future family plans.

We talked about these kind of smell triggers earlier on, but those triggers can be, they can become, I've got some really weird things that make me feel like physically sick, like utterly bizarre things that you can't even place why they make you feel sick.

My most amusing one is, what's the name of the guy that presents MasterChef, Greg Wallace, his seeing his face makes me feel physically sick.

And anytime I get a text message, you know, and you have to type in like a six digit code to like authorize a payment or something.

For some reason, that makes me feel, these must have been things that like occurred at some point in pregnancy.

And then it's just bizarre the way that your mind responds, I suppose, in that kind of post-natal period.

So yeah, definitely kind of seeking support for that is really important.

So the final thing that, well, there's a few sort of final questions.

But number one would be, if people have experienced hyperemesis in a pregnancy before, sometimes they might come to the decision that that's it.

Their family is, they can't have any more children due to the chance of experiencing that again.

If people are kind of in the position of either making the decision, do we want to have any more children?

Or they are kind of have decided, yes, we're going to.

What plan, you know, first of all, how likely is it that it's going to occur again?

And second of all, what plans can they put in place ahead of a second pregnancy to maybe make it easier?

Basically, yes, you have to assume you're going to get it again, because the chances are, you know, right up at like sort of 89, 91% chances that you're going to get it again.

In terms of planning, that's quite a big area.

There's quite a lot you can do.

The trick is to not wing it and to actually plan.

So, you know, presumably you now have another child that needs looking after.

So you as a family can sort of put in place, you know, child care support, support, you know, with filling your freezer full of meals for your partner and other children, making sure that friends and family are going to be there to support you.

And then speaking to your GP or a hospital doctor to put into place a preemptive care plan.

There may be benefit to starting medication prior to symptoms starting to get on top of it before they get too severe.

There's some mixed evidence that that may help, which is the same concept as with like travel sickness and chemotherapy, nausea and vomiting and things like that.

But yeah, planning is key to that.

My book has a whole section on planning, on pre-pregnancy planning, and it's thinking quite strategically about your life and how you're going to cope with the fact that you're going to be ill for some months and your family needs to cope without you for some months.

And so sort of planning all of that.

So yeah, that's the key thing is to plan.

Yeah, definitely.

And yeah, I would kind of, we put in a lot of plans for kind of going into a subsequent pregnancy, which I would definitely recommend.

And in your book and the Pregnancy Sickness Support website has got some good resources around kind of preparing for potentially having another hyperemesis pregnancy.

So, I mean, I could probably chat for absolutely hours about this.

I still have a million questions.

But to wrap us up then, there is a question that we ask everybody at the end of every podcast episode.

But I'm going to go slightly more specific with this one.

It's if you could gift a pregnant woman one thing, what would it be?

But let's go specifically somebody that's suffering with hyperemesis.

If you could give them one thing that can be an actual object or a concept or idea, what would it be?

I think it would need to be a package of care and support.

Or better yet, a cure.

We don't have a cure.

We don't have a cure.

So that would be nice.

Keep going.

Keep going.

I'm waiting.

I reckon I've got 10 years for you to find a cure and then I can have another baby.

Yeah, we'll see, hopefully.

And say finally then, if people want to find out more information or find out more about your work, where can they find you?

Where can they find Pregnancy Sickness Support?

Yeah, so Pregnancy Sickness Support has got a website, pregnancysicknesssupport.org.uk.

We're on social media, Instagram, Facebook, Twitter, all that sort of thing.

My own Instagram is Pat Mamadine, but that's not really specifically high-premises.

And yeah, you can get in touch with us through the website and through our social media.

And the final bit that I would recommend is your book that is for children.

So the book that's for, if you are expecting a second baby, there's a fantastic book that Caitlin's put together with the charity that is aimed at explaining to kind of young children what it is that you are now going through expecting a second baby with hyper-emesis.

And it's just little things like that, I think, that can help from the kind of emotional perspective.

So thank you so much for all of your insight.

Hopefully that will point a few more people in the right direction in terms of getting support.

And little by little we can kind of make some changes, hopefully, to improve access to care.

Yeah, indeed, hopefully.

It will be better in the future for our daughters.

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