Pre-eclampsia and high blood pressure in pregnancy

Symptoms and signs of pre-eclampsia

The symptoms of pre-eclampsia are varied. Sometimes they are hidden and women do not experience anything significant until they are very unwell. For doctors and midwives, it can be a case of trying to piece together a jigsaw of symptoms that might include:

headaches,
swelling,
nausea,
disturbed vision,
for severe types of pre-eclampsia, pain near the ribs (epigastric pain).

Sometimes the only sign something was ‘wrong’ came from a blood pressure reading or a result from testing a urine or blood sample. This is why routine blood pressure, urine and blood testing at medical appointments throughout pregnancy is so important. Some women we spoke to also self-monitored their blood pressures at home during their pregnancies.

Not everyone we talked to who developed a high blood pressure problem (like hypertension, pre-eclampsia or HELLP syndrome) noticed any particular symptoms. Some women knew they were feeling unwell but couldn’t pin-point why they were “groggy” or “not quite right”. Sometimes they dismissed their symptoms as ‘normal’ for pregnancy. However, some women were aware of being very poorly and had severe symptoms.

Helen X recalled her GP explaining to a medical student that pre-eclampsia was more than high blood pressure and that there can be other symptoms.

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Age at interview: 31

Sex: Female

Age at diagnosis: 31

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So I remember the GP saying, because he had, there was a medical student in that appointment with me. So I remembered them talking about it, and he was saying, “You know, the reason we’d send her to hospital, is because we’re concerned that it could be pre-eclampsia or you know, which… “And he said, “What is that?” You know, and she was like, “Its high pressure.” And he was like, “Well no, its not. Its you know, that’s a symptom of it. But that’s not necessarily what it is, and saying, its you know, its an unusual condition, auto immuney may be, but we’re not really sure. And your symptoms would be, you know, the swollen legs, headaches, blurred vision, the high blood pressure is one of them, and that sort of thing. Protein in urine, that sort of stuff. So I remember him sort of saying that.

Medical tests

Most of the women we spoke to did not directly notice the ‘signs’ of pre-eclampsia or HELLP syndrome. Instead they showed up in tests:

High blood pressure readings
Proteinuria (protein in the urine)
Poor kidney function (based on testing a blood sample)

Slightly high blood pressure and proteinuria results are not necessarily a cause for immediate concern. Sometimes the pregnant woman was just asked to have more tests, either at their GP surgery or at the hospital. This sometimes meant staying in hospital for monitoring.

In other cases, no action was taken right away but the results noted for follow-up at the next routine appointment. Doctors were looking for possible patterns developing over time. Some of those we interviewed felt that if a closer eye on their health had been given when there were early signs it could have stopped them from becoming so ill later on, for example if they had been started on blood pressure medicine earlier.

Sometimes medical tests showed problems, but women didn’t notice any symptoms. In other cases, pregnant women started to feel poorly very quickly.

Josie’s blood pressure was unstable in her pregnancy, with points when it was very high as well as times when it settled back down. She didn’t recognise having any symptoms at the time.

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Age at interview: 45

Sex: Female

Age at diagnosis: 39

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And what symptoms of pre-eclampsia did you experience?

None, none in terms of actually feeling anything. I mean I felt brilliant; I'd never felt better. It was …I was anxious but in terms of, you know pain, I had no pain. I'd seen no bright lights you know, so all of the things they kind of told me to look out for I just didn’t have; I never had. Although when… I remember talking to a doctor in hospital and saying, "Actually I did used to wake up with headaches and I'd kind of dismissed it. I thought, 'Oh it must be just the hormones.' But in a way that’s a kind of symptom that I wish, you know, I wish I'd known about, you know if you wake up with a headache then you need to get that checked out.

Tests showed that Sarah had protein in her urine samples over several weeks. She was admitted to hospital and soon developed more symptoms, such as headaches and visual disturbances, as well as very high blood pressure.

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Age at interview: 37

Sex: Female

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Well, I’d always had, because they check your protein and your blood pressure and everything throughout the pregnancy, I mean, I’m quite lucky that I’ve got a normally low blood pressure. Well, I’m told I’m quite lucky that I’ve got that, anyway. But around about 30 weeks I started swelling. My legs and my feet swelled and I just started feeling even more generally unwell than I had done the whole of the pregnancy. And they, they, I’d had protein in my urine pretty much for about ten or eleven weeks before that. And I remember going in one day for a check-up, seeing the obstetrician, and him saying, “Oh, we’re going to have to take you in.” And I said, “Why?” and they said, “Well, your blood pressure’s shot up, you’ve got protein in your urine and we think you’re getting this condition called pre-eclampsia, which I’d heard of but not really taken much notice of, because I thought, there’s no way, again, that it can happen to me. So they brought me in, and it’s really funny because I, I felt fine. I felt OK. But the minute that they – again, this could be psychological, I don’t know - the minute they got me into the ward, the blood pressure really did start shooting up, and I noticed the difference. But they told me things like you get black spots in front of your eyes, and I had had that, but not taken any notice of it. Blinding flashes and really severe headaches, but I just thought it was all part of it. I mean, I’m very good at, if I know that I’ve got something or there’s a chance that I’ve got something, I will go out, all out and read, read up about it. And although I’d heard of pre-eclampsia I’d never, never thought that it would happen.

The main pre-eclampsia symptoms women experienced were:

Swelling (looking and feeling “puffy”) – swelling often affected the hands and feet but could be all over, including the face.
Headaches (ranging from “a bit of a headache” through to “really severe” and “splitting” headaches “a bit like migraine”) – these could be quite short-lived or last for several days.
Visual disturbance (“blinding flashes”, “bright lights”, “black spots in front of your eyes”, “everything had just gone black”, seeing “sparkles”) – these sometimes happened briefly and periodically, other times the problem lasted for a while.

Paige became very swollen, which was a sign of pre-eclampsia. The swelling settled down after she gave birth to her daughter. She was discharged but the swelling started to return a few days later and she was re-admitted to hospital.

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Age at interview: 20

Sex: Female

Age at diagnosis: 19

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Like my rings, I didn’t wear any of my rings, they were just too tight. At the beginning of my pregnancy in the morning they were a bit tight but I couldn’t wear them at all because my fingers and my arm started to ache obviously it had got too big. It was abnormal swelling, like you get swelling anyway but my feet, they just looked like balloons; they looked like you could pop them, you could put a pin in them and you could pop them it was that severe. Like I put my boots on…when I got discharged from hospital obviously they were the same boots here that I wore home and I could move in them, whereas they were tight on my feet like two days before. So it was not normal swelling, it was like really severe and horrible swelling sort of… like I walked past my dad the one day and my dad was like, "Oh my god, like she looks just swollen everywhere." And when I had my c-section they said, "You had water in your back," so the swelling was just everywhere, not just hands, feet; it was actually in my arms, my backs, my legs.

Kate thought she might have had one episode of visual disturbance – it got better soon afterwards so she didn’t think much of it at the time.

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Age at interview: 35

Sex: Female

Age at diagnosis: 34

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I know that some people have visual disturbances and headaches. But thinking back on it, I had one episode of the visual disturbance. It must have been, well, only a few weeks prior to giving birth. I remember walking along, and then there was one line of vision here. I thought oh this must something in my eye, because I couldn’t quite see. I couldn’t see my hand to the left of me, and I thought that’s odd. That’s a bit weird. Didn’t really think anything of it. I thought well I’m obviously tired because I’m not sleeping very well. And then within about an hour it had gone away. I didn’t mention it to anybody because it didn’t mean anything to me. But possibly that was part of it.

Other pre-eclampsia and HELLP syndrome symptoms included:

Weeing less frequently (reduced urine output)
Feeling sick and vomiting
‘Quick’ reflexes and spasms/twitching (called hyperreflexia, indicating increased likelihood of a fit)
Bleeding (e.g. nose bleeds)
Feeling very hot and ‘overheated’
Pain at the top of the abdomen or ribs (sometimes called epigastric pain)
Difficulties breathing/feeling breathless

In addition, HELLP syndrome (thought to be a severe type of pre-eclampsia) can affect the liver and included other symptoms, such as:

Itchy skin
Problems with blood clotting
Liver damage (including risk of the liver bursting)

Kate was feeling unwell. She took her own blood pressure at home and it was high. Although initially dismissed by a midwife, she later went into hospital with severe epigastric pains and was diagnosed with HELLP syndrome.

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Age at interview: 35

Sex: Female

Age at diagnosis: 34

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I got to, well, about 34 weeks and I had what I thought was indigestion. I woke up at night with pains between my ribs. And I thought, well this must be indigestion. There’s nothing mention it to the midwife, because I assumed it was indigestion. I actually told her it [laughs] it was indigestion. I had one episode of slightly high blood pressure, but the rest of it had been fine, and then I was told by the midwife that I was so low risk that she wouldn’t need to see me for another three weeks. So I thought oh wonderful. And then ten days later it all went horribly wrong.

I’d been out for a meal the day before. I’d been swimming that evening. I’d been tutoring as well. And on the way home, I was thinking about dinner, as pregnant women always think about their next meal, and I thought, I don’t feel hungry. And I thought, oh this is a bit odd. Didn’t think much of it, got home and didn’t feel right. Something I couldn’t put my finger on. You know your own body don’t you? You know when something’s not quite right. And, I went on the NHS Direct website and I’d felt a bit swollen, my ankles were larger than normal, slightly uncomfortable. My fingers were slightly tingly as well. And I went down the check list of pre-eclampsia and I thought well, general feeling of being unwell, swelling, and I thought well that’s a couple of things ticked off.

So I texted the midwife, and I said, “I don’t feel very well. Feeling slightly swollen. Possible pre-eclampsia?” And she didn’t reply for four days [laughs]. Which is a bit late by then. So I text the other midwife that I had a number for and she texted me back the next day. I didn’t want to call them because it was about 8 o’clock at night and I thought well, I’ll just sleep it off you know. So I called my partner. At the time we weren’t living together and I said, “I don’t feel very well.” And he asked me if I wanted him to come round, and I thought oh no, I don’t want to bother you. But something said, yes. Just you know, get him round. And then I have a blood pressure monitor, just as well and I took it and it was extremely high. It was 191/113. Which is high, and I thought oh gosh this is bad.

And I took [partner], I took my partner’s blood pressure and that was fine. So I took mine again and it was still the same high reading and on the NHS Direct site it had also said high blood pressure. So I called NHS Direct and I said, “I’ve got this, this, and this.” And they said, “You should call the hospital.” So I was due to go to have the baby at a maternity ward. I was going to have drug free [laughs] water birth, you know, how it goes. And they put me in contact with the, with another hospital, and I told the midwife exactly how I was feeling and I told her the reading on my blood pressure monitor and she said, “Well it must be faulty.” So I said, “I’m really sorry. I feel really stupid. Sorry to have bothered you.” And I thought right I’ll just go and sleep it off. And then within about an hour I started getting pains here. And my partner said, “Right we’re going into hospital.” And I said, “No, no, no. I’ll be all right and you know, don’t want to make a fuss. I’ve four weeks to go.” So we went in and by then I was almost doubled over in pain. It was, oh it was incredible. Almost unbearable. I later found out it was epigastric pain.

One of Claire’s pre-eclampsia symptoms was vomiting. She was worried about it and mentioned it to her midwives, but thought it might be a ‘normal’ part of pregnancy.

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Age at interview: 39

Sex: Female

Age at diagnosis: 39

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So it probably wasn’t until the vomiting started that I really thought, 'This isn't quite right,' because it was bile, it wasn’t just being sick because I'd originally thought, 'OK, third trimester, morning sickness, it's a bit bizarre,' but Googled it and it was kind of like OK. Mentioned it to my midwives at antenatal appointments; it never really got picked up on and I thought, 'OK, it must just be what happens.' From the vomiting I became unable to eat; nothing tasted right; I wasn’t able to keep fluids down and things like that, and again nobody seemed greatly bothered by it, so I just thought, 'OK, I'm just, just pregnant.' The tiredness and things again I always thought I'd be further on for that to happen.

I started losing a little bit of weight which concerned me, but again when it was mentioned when they took measurements of the baby and the bump, everything measured OK so again it kind of dismissed, or just brushed to the side; it didn’t seem to be important so I didn’t push it. It was a case of OK it must just be another side-effect of being pregnant who had baby's OK. Put your big girl pants on and get on with it really.

Claire developed hyperreflexia (a medical description for when a person’s nervous system over-reacts and they have ‘brisk reflexes’).

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Age at interview: 39

Sex: Female

Age at diagnosis: 39

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That’s when my legs started. I guess they'd been kind of twitching but I just assumed it was just generally you get restless legs. It wasn’t till everything else, and with hindsight you go through everything that’s there that I displayed probably more symptoms by then.

And you said about this hyperreflexia. What did that feel like to you?

Really bizarre actually. I don’t recall ever having had my reflex tested before, or even as many times as that, and it was they would touch my knee and my leg would jerk quite, quite high. They did it with my ankle and was pushing my foot, and again yet everything was super… I would have assumed it was great; I didn’t realise that was a bad sign [laughs]. But yes, so that they were sort of very, I think brisk was the word that they kept using.

Symptoms could start suddenly or quite gradually. Julie’s symptoms developed quickly – a severe pain like “someone had hit me over the head”. Although she felt very unwell, she was unsure what to think: “I didn’t know if these were just quite normal”. It could be difficult to notice or interpret symptoms that developed slowly over time, especially when the symptoms were similar to common pregnancy side-effects, such as swelling. One clue was women finding they could no longer wear jewellery such as rings or watches because their hands had become so swollen. Partners, family members and friends sometimes picked up on these physical changes, even if the pregnant woman hadn’t noticed the change. Hanna remembered a work colleague suggesting she had pre-eclampsia because her feet were so swollen. Stewart and Claire think partners should be given information about the symptoms to look out for. They might spot things, especially if the pregnant woman might otherwise “play it down”.

Some women felt torn between wanting their pregnancy over as soon as possible (because they felt so ill) and wanting to continue the pregnancy for as long as they could (to give the baby more time to develop). Kay remembered reaching a point where she felt that “I don’t even want to be here anymore, this is pretty horrific”.

Combinations of symptoms and signs

A diagnosis of pre-eclampsia or HELLP syndrome was usually made on the basis of multiple signs and symptoms coming together. In this way, each symptom and sign can be one piece of a bigger jigsaw. Sometimes test results—e.g. a high blood pressure reading—then brought other sensations and symptoms into focus as relevant.

Some of the women we interviewed felt no particular symptoms, even though tests showed they were very unwell. It was confusing and even annoying if a doctor insisted that a woman was seriously ill but she felt well. Some women were asked to stay in hospital for more monitoring, even if they didn’t feel unwell. On the other hand, it could be upsetting and frustrating if doctors or midwives did not appear to be taking concerns seriously when a women told them about symptoms.

Kay went into hospital for checks on her blood pressure. She was told that she was very ill with pre-eclampsia, but she felt fine at that point.

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Age at interview: 42

Sex: Female

Age at diagnosis: 38

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Over the next three weeks, when I went back to hospital the next day they kept me in. And I said then, you know, "Why are you keeping me in now?" and they were like, "Well it's pre-eclampsia." I said, "But yesterday you said it wasn’t pre-eclampsia and you let me go home."

And they're like, "Well it's definitely pre-eclampsia and we think you should stay in hospital," which I wasn’t keen on, and the doctor said to my partner, "If that, if that was my wife I wouldn’t let her go home." So he made me stay.

And at this point it was really surreal because I felt fine.

I just felt like I had a cold; I didn’t feel ill. So, they put me upstairs on a ward with four other girls and again I was feeling really hot and the midwives came round and they were like, "No, you're really ill." "Mm, well I don’t feel it." They're like, "Look you're the illest woman we've got in here." "Mm, don’t think so," because I did genuinely feel OK.

Olivia had pain at the top of her bump as well as other symptoms, such as visual disturbance (seeing “sparkles”), and high blood pressure readings. She felt these warning signs were dismissed by her midwives.

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Age at interview: 32

Sex: Female

Age at diagnosis: 28

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The pain, yeah the pain started about 34 weeks after my blood pressure had kind of gone up over a hundred and fifty, that’s when I started getting the pain – it was round here, and it was sharp, sort of persistent. It was like having cramp all the time; it was like something was caught in a vice and it was all… it would radiate across the top of my bump as well, and it would just be, oh it was worse in an evening.

I'd sit down on the sofa and I'd just be in agony, you know I'd be in such agony. And I'd be phoning the on-call midwife going, "I've got this pain," and they were like, "Yeah it just sounds like growing pains you know, just sit down, look after yourself, you know don’t strain yourself. It sounds like you’ve strained the muscles." And I was like, "But my blood pressure and the sparkles and the pain," and they were like, "Yeah they're all normal pregnancy symptoms, don’t worry about it," you know. And I'm there going, "Oh come on, I could do your job," and you know I'm so frustrated by this point, but I just thought, 'Right OK, I'll just sit down and I'll you know…' and my husband was taking my blood pressure as well at home because he's got all this kit and everything.

And you know we were seeing it creep up in line with what was being recorded and I just thought, 'You know what, I'm just going to look after myself; nobody's going acknowledge it. I've got this pain – if it gets really bad I'm going off to, you know labour, labour ward to see what they can do with me there.'

Not everyone experiences all the signs and symptoms. Any one of the major three indicators of pre-eclampsia (high blood pressure, proteinuria, extreme swelling) may be the basis on which a diagnosis is made. It is sometimes hard for doctors to make a firm diagnosis and decide how to best medicate/treat pregnant women who do not ‘tick all the boxes’ of symptoms for a particular condition.

Dr Khan says there is often confusion about the different labels used when talking about pre-eclampsia or other blood pressure disorders in pregnancy. This is sometimes because the condition progressed over time.

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It can be confusing for women to understand what’s going wrong when different doctors and midwives are using different words. Examples of these words might be hypertension in pregnancy, pre-eclampsia or HELLP syndrome and one of the reasons that sometimes midwives and doctors seem to cross over with these words is because the conditions themselves cross over to a greater or lesser degree. For example, HELLP syndrome, which is a condition where you might have damage to red blood cells, changes in how the liver works and changes in certain cells in the blood or platelets, very often, if not almost always, is associated with high blood pressure. So many doctors and midwives feel that HELLP syndrome is actually a subset of pre-eclampsia. Hypertension in pregnancy, on the other hand, is usually a phrase used to describe just high blood pressure in pregnancy, which can be contrasted against pre-eclampsia, which most people understand as a mixture of high blood pressure, protein in the urine and swelling. In truth, for an individual patient, she might be given a variety of these different phrases or terms at different times but it’s important for that patient to question the doctor, if she doesn’t understand exactly what’s going on.

Awareness of symptoms and signs

Many symptoms of pre-eclampsia are experienced in milder forms throughout most pregnancies. Some women said they expected to feel quite tired and be a bit swollen at points during their pregnancy. So they dismissed these symptoms or didn’t think they were anything to worry about. A few women described themselves as “migraine sufferers” and so intense headaches (sometimes with visual disturbance) were often put down to this rather than a significant symptom. Samantha X initially thought some pain in her abdomen was “just sort of normal indigestion and heartburn that pregnant ladies get”. Kay thought she just had a cold with “flu-like symptoms” at first.

Melissa had some swelling but didn’t think of it as a symptom at the time.

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Age at interview: 27

Sex: Female

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Did you feel any different when you started to have the pre-eclampsia?

Not at all, no. I mean I was swollen anyway and my feet were swollen and my face was swollen but I thought that was quite normal. And also, I was working full-time to the Saturday and I had him on the Tuesday and I don’t think that helped at all. I thought that’s why I was swollen because I was, I’m a hairdresser and work, you know, on my feet. So that was, that was kind of it, really. I didn’t have any symptoms at all but because, obviously it’s high blood pressure, that’s the main, the main symptom and you don’t notice that at all, so.

Because women were initially unaware of high blood pressure conditions in pregnancy, they hadn’t known what symptoms to look out for. Being asked about possible symptoms alerted some women to things to be aware of. Only with hindsight did some realise they did have symptoms and that these had been warning signs.

Some women said they “played down” symptoms as they didn’t want to worry others or be an inconvenience. Some had mentioned symptoms they were concerned about to medical professionals. In some cases, more tests were done. In others, doctors or midwives didn’t seem too concerned. A few felt they had been dismissed when they raised concerns and this put them off mentioning it again in the future, even if they were very worried. Dominie remembered being told that “oh, there’s nothing wrong” which “knocked my confidence in my knowledge”.

Those taking part in the BuMP study checked their reading if they had a headache or felt a bit unwell, to find out if it was related to high blood pressure or not. A ‘normal’ blood pressure reading could be reassuring and getting a high blood pressure reading meant they felt more confident about seeking medical help. Abigail explained, “the fact that you can monitor it yourself at any time gives you that reassurance that you don’t have to wait for the next appointment”. However, blood pressure is only one ‘jigsaw piece’ of pre-eclampsia and there are other signs and symptoms.

Problems developing after giving birth

Pre-eclampsia can happen at any point in a pregnancy and during labour/delivery; it can also continue or develop after the birth (late onset pre-eclampsia). But most women we spoke to didn’t know that pre-eclampsia can still affect them for several weeks after giving birth. Some women did have problems with their blood pressure after giving birth and they wanted to encouraged others to keep looking for any new symptoms or symptoms becoming more severe and to seek help if this happens.

Vicki had high blood pressure a few days after giving birth and returning home with her baby.

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Age at interview: 36

Sex: Female

Age at diagnosis: 36

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So he was delivered at 38 weeks, he was big enough, no no problems there. I came home a couple of days later, everything seemed to be fine and then I think it was on day five, he had actually developed a little rash and I think, you know, first time mum, really quite worried about it, thought we will pop down to, our midwives do a drop in clinic. So I popped down there and I had a splitting headache, which I’d had for two days but, as I mentioned, you know, as a migraine sufferer, that’s quite normal for me and I thought it was the stress of having a new baby, trying to breastfeed, everything like that and that’s what I put the headache down to. And, while I was sitting in the waiting room, I had to rush off and be sick and that’s when I thought, you know, oh dear, this is this is quite normal with a migraine as well, to be sick.

And then I went and saw the midwife and she said, “Are you okay?” And I said, “No, I haven’t been feeling well.” And when she took my blood pressure, it was the highest that she’d ever taken and I think it was up in the 210s, 150, or 130 or something like that. And so she was, you know, instantly, “You need to lie down. You need to get on your left side. We need to call an ambulance.” And I was rushed back into the [hospital] again. So yeah, and then, you know, they just monitored me. They put me on labetalol and more blood pressure medication, that kind of thing.