Journey into the world of hyperemesis gravidarum
Back in May of this year Pregnancy Sickness Support held its biennial Volunteer Conference in Bristol.
Michelle Nicholson presented her MSc Dissertation qualitative research detailing the beneficial effects of writing therapy for women who have suffered all levels of pregnancy sickness. (You can read more about this here)
As a BACP Registered and Accredited Counsellor and two times pregnancy sickness survivor, Michelle has now set up the UK's first national pregnancy sickness telephone counselling service...
I handed the blog over to Dr Margaret O’Hara - HG survivor, medical physicist and Trustee of Pregnancy Sickness Support to talk about our current research and the importance of NVP and HG sufferers and survivors being involved.
One of the aims of PSS is to highlight women’s experiences of HG to healthcare professionals and the wider public. This isn’t just about raising awareness so that women will have some support for the condition, although that is very important. We also want to contribute to medical research so that the questions which researchers seek to answer are sensible and useful. You will never uncover anything useful if the question you are asking in the first place is based on poor assumptions.
We know that this isn’t just an academic issue, these research results feed back into people’s beliefs about HG, and that directly impacts women. An example of this is the lack of agreement over the recurrence rates for HG, in other words if you’ve had HG once, how likely are you to have it again. At PSS, we often hear of a woman going to their GP again after a first HG pregnancy and being told ‘Oh every pregnancy’s different, you probably won’t get it again.’ So, feeling reassured, she embarks on another pregnancy, gets HG (because actually the recurrence rate is very high) but she has done no preparation and is now caught out with another child to look after and not enough support. We also know that women in this situation are more likely to be forced to terminate the pregnancy.
So the stakes are very high indeed, and good quality information is essential. You would think it would be easy to find out how likely HG is to recur again – surely you could simply ask women who have had HG and then have another pregnancy and count how many get it again? This is one approach, but unfortunately, this hasn’t always been the way it’s done. It is also complicated by the fact that we don’t have a good definition of what constitutes HG that everyone agrees on. Historically, HG has been defined, in part, by the treatment – i.e. if you ended up in hospital on a drip for dehydration, then you’ve had HG. If you didn’t, then you haven’t. Again, this is one of these situations which women who’ve had HG will find bewildering.
What if you tried to get IV fluids but you were sent home by a doctor who didn’t think your ketones were high enough? Compare a woman who gets antiemetics as soon as she requests them so manages to drink a little, with a woman who is left with no medication so can’t eat or drink anything at all. Or compare one women whose partner brings food and drink to her bedside, with one who has nobody to help so has to get up to go to the kitchen for a drink which sets off a vomiting bout that she can’t control. The former might avoid a hospital admission, while the latter doesn’t. Does the first one not have HG? According to the strict definition, no she doesn’t.
One of the main studies on recurrence of HG was based purely on hospital records for admissions for fluids. They didn’t even contact any of the women to ask them about their experiences. They found that 15% of the women with a first admission to hospital for HG came back in on a subsequent pregnancy. Based on this, they reported that there is a 15% chance of recurrence. The study was done in Norway, and what we know from women in Norway, is that the model of care for women with HG during the time of the study, was based on the idea that women with HG were making themselves sick and needed to be shocked into pulling themselves together. They were isolated in a dark room, refused visitors for the entire stay, and forced to try and eat. You can imagine that if this was the prospect of a hospital admission, you would be very strongly motivated not to go anywhere near a hospital in your next pregnancy. A Norwegian woman that we know told us that she put in place a lot of family support for her next pregnancy and avoided admission, but she was every bit as ill as she had been in the first pregnancy. As far as she is concerned, she had HG in both pregnancies. As far as the researchers are concerned she only had it once.
Compare this with research done by a group in the USA which involved former sufferers, where they asked women to describe their symptoms and didn’t just rely on hospital records. They found that the recurrence rate was 86%. Other studies find a recurrence rate in between these numbers and none of them agree on what combination of symptoms and treatments constitutes a diagnosis of HG.
This is why it is very important for patients to be involved in research, especially for conditions like HG which are poorly described, and suffered alone out of sight of anyone. We, as a body of patients, have knowledge about our condition which is simply not seen outside of our circles. At PSS, we want to try to bring out that knowledge and have it published in academic literature where healthcare professionals will see it and take notice.
Spewing Mummy and I design surveys to answer specific questions to address some of the knowledge gaps and misconceptions which exist because of poorly done research in the past. We want to get the full picture out there so that ultimately it will feed back into better care. So that in future you will go to your GP to discuss another pregnancy and they will say, yes, the recurrence rate is very high, let’s make a plan for your next pregnancy so that we’re prepared for the worst.
We have a survey open at the moment for women who have had more than one HG pregnancy in the UK lasting at least 30 weeks in the past ten years. We are inviting anyone who is eligible to follow the link below to tell us your experience. All the answers are anonymous and we will write up the results for publication. We hope that you will relish the opportunity to set the record straight and shed light on how things really are for women with HG, and thank you in advance for taking part.
As you know I’m the Chairperson for the National Hyperemesis Gravidarum charity Pregnancy Sickness Support which runs a helpline and a national support network of volunteers which I set up nearly 5 years ago. The network started as a small group of trustees each with a spreadsheet of three or four volunteers in their geographical region who they’ll have spoken on the phone to at some point. When a women suffering hyperemesis would find our website she would fill in an online form and it would go to the trustee running her area and at some point, hopefully within a week they would get in touch with her and match her with a volunteer. And when I say their geographical area I’m talking the whole of Scotland, the whole of the South West and so on. A woman in Penzance might be supported by someone in Gloucester!
As the website was found more easily the contacts from sufferers increased month on month and as the wonders of Social Media platforms grew such as Facebook, with all it’s brilliance and nightmarishness combined, so did the pool of volunteers. Within a year we were putting in place formal application forms and interviews for volunteers and taking registration details for sufferers. Particularly as we learned from challenges such as Munchausen By Internet, a mental health condition in which physically well people seek intense online support for conditions they don’t have, such as hyperemesis gravidarum.
By the following summer we had grown to the point of requiring our first paid employee, for 10 hours per week, who put in place structures such as policies and guidelines for volunteering, guidance for professional support and a thorough online training package. We also computerised our feedback systems and invested in a mobile phone for the Charity. At this point the helpline was still an answerphone system where a message would be left and we would aim to get back to them within 48 hours.
Fast forward another three years through various ups and downs, challenges and successes and what we have today is simply incredible… we have an office with an actual phone line which rings and can be answered when a sufferer calls the helpline. It’s open Monday to Friday 9am – 4.30 and messages left outside this time are responded to the next working morning. We have a network of over 235 volunteers the length and breadth of the UK. From the Ilse of Harris to Penzance, in every major town across the country and many rural areas too. We have a forum with members numbering 2,500 and when hyperemesis gravidarum is in the news it’s us the press call for comment. Our leaflets can be found in numerous early pregnancy units these days and we’ve had GPs and midwives call our helpline for support in treating their patients.
And yet we have no formal funding! We’ve been rejected from the Lottery, the Tampon Tax Fund and so far every trust and grant giving organisation we’ve applied to.
This week I’ve been covering the Helpline for our, now FULL TIME employee which she was on annual leave. It’s been a while since I’ve answered the helpline for a full week and I truly enjoyed it. It’s humbling to speak to women who are going through HG now as my own memory fades with the passage of time (My daughter starts school on Tuesday!). Thankfully, since the helpline started the reports of poor care and dismissive attitudes are definitely diminishing. Yet just today I spoke to a dangerously dehydrated women whose doctor yesterday told her she didn’t want to admit her as she’s only six weeks pregnant… Umm what difference does that make? She’s been seriously ill for two weeks, cannot keep down oral medication and has barely drank 100 mls of fluid in over 24 hours most of which was vomited up. Her urine is the colour of Lucozade!
But as I say, these cases are becoming rarer… WE ARE HAVING AN IMPACT! For the majority of women I was a listening ear, reassurance that they were on safe medication and giving information about the other options to discuss with their, predominantly helpful, doctors. And I was able to match them with a volunteer. Our volunteers are just incredible! No woman waited more than a couple of hours to be matched and many were matched within about 20 minutes. Their volunteers will now text them at least daily to see how they are, provide ongoing support, a shoulder to cry on an ear to listen and sympathy over being “gingered”. They’ll empower them to advocate for themselves and ensure they know their rights and what treatments are available. They’ll be with them through the long months ahead and some will go on to become friends, living in the same towns and able to collaborate on ways to improve services locally. Hopefully most of the ladies I spoke to this week will also go on to volunteer and fundraise for us.
So whether you are a volunteer or a sufferer or relative or just have an interest in the condition… take heart, things are changing, we are making a difference and having an incredible impact. Keep up the great work and if you’re able please consider donating.
Surviving NVP & HG in the summer
Surviving NVP and HG is traumatic and debilitating, when you add in high summer temperatures (25 degrees + during the heat wave) it can make it that much more difficult to manage.
Karen Lodge, Support Coordinator at Pregnancy Sickness Support has put together a list of top tips and helpful products that might go some way to help sufferers during the warmer summer months.
Buy a fan!
Buy the best fan you can and get one in every room you go into, even the bathroom.
Make sure you have it positioned in front of an open window so that it can draw in cold air instead of circulating hot air.
If you can, invest in the best quality fan for the room you spend most of your time. You are probably going to spend a lot of time there and you need to be as comfortable as possible.
Top of the range fan
Fan for on the move
Wear all natural!
Man-made fibres are known to be sweat inducing which can lead to rashes and just plain stickiness.
Choose cotton or silk loose clothes or Pajamas’ to keep cool.
Top of the range
Finding it difficult to drink water and keep it down is very common. An alternative in the hot weather would be to freeze your safe drink in lolly moulds, as ice cubes or as slushies that you can suck on throughout the day.
Amazon has a great range of lolly and ice cube moulds, my favourites are below
Running your wrists under cool water, soaking your feet in a tub filled with cool water or soaking a bed sheet in cool water before wringing it out and laying underneath it are all good ways of cooling down (especially if you keep your fan on). Soaking cotton wool balls in cool water and placing them over your eyes and showering under cool water 1 hour after taking your medications (when they are most potent) can also help. Ask your partner, mum or friend to help if you need to.
You can also fill a hot water bottle with water, store it in the fridge/freezer and use it as a cold pack when necessary.
If you find that tap water smells then use a large bottle of mineral water that you can store in the fridge.
Rest, rest, rest
Keep any activity to a minimum, rest as much as you possibly can and nap as and when you need to.
If you find that the room you are in is getting hot even with a fan on see if you can move to a cooler room in your house. Make sure your curtains are pulled if the sun is shining in, turn off heat emitting lights and devices and look at hanging a damp sheet at the window to cool the air as it comes in.
If you are working arrange earlier/later start and finish times with your employer so that you can avoid peak travel times and cramped public transport.
If you do have to go out only do so during the cooler times of the day (before 1pm and after 3pm) and ensure you have applied sun lotion.
Unscented sun lotion is available as the smell can be overwhelming.
Advice from the skin cancer foundation suggests; “applying the equivalent of a shot glass (two tablespoons) of sunscreen to the exposed areas of the face and body – a 10 pence coin-sized dollop to the face alone. If you’re using a spray, apply until an even sheen appears on the skin. Remember that sunscreen needs to be reapplied every two hours, or more frequently after swimming, heavy perspiration, or towelling off. Also remember, no matter how much sunscreen you apply, the SPF should be 15 or higher for adequate protection – and ideally 30 or higher for extended time spent outdoors.
In addition to using sunscreen, seek shade whenever possible, and wear sun-protective clothing, broad-brimmed hats, and UV-blocking sunglasses. Sun screen should be applied 20-30 minutes before going out.”
Unscented sun protection
Soltan Sensitive Hypoallergenic Suncare Lotion SPF30 200ml
Ultrasun Extreme 50+spf 100ml
Ambre Solaire Sensitive Advanced Lotion SPF50 50ml
Baby Sun Lotion SPF 50+ 200ml
Soltan Sensitive Hypoallergenic Suncare Spray SPF30 200ml
Bioderma Photoderm Kid Spray 200ML SPF50+
Dehydration is common symptom for women suffering with NVP & HG sufferers and their carers need to be vigilant as heat will exacerbate this... know the signs and seek help from your GP or Early Pregnancy Unit as soon as possible.
Symptoms & signs may include;
scanty dark infrequent urine
difficulty in swallowing
red swollen tongue
loss of skin elasticity
loss of weight
raised pulse rate
lethargy, tiredness or confusion
If you have found ways that help you cope with NVP & HG in the heat please let us know by commenting below
The amazing and wonderful Hyperemesis Education and Research (HER) Foundation in the USA are developing a tool which can be used to assess the severity of a woman’s HG symptoms and their impact on her life. Currently the only commonly used tool is the PUQE Score which is handy for distinguishing between regular morning sickness and hyperemesis gravidarum and for assessing the severity of nausea and vomiting in pregnancy. But for women with full blown HG it’s not a lot of help for assessing whether treatments work and so on, which is why Kimber and team are developing a new one!
This is different to the work by the team in Amsterdam which are looking at a definition in the first place and outcomes which can be measured specifically for research purposes. Instead this is a tool which can be used by women, their families and their healthcare providers.
So how can you help? Well to take part you need to be currently pregnant and suffering. Then you click on the link below and fill it out. If your symptoms change over the coming weeks you can fill it in again and again, basically using it as the tool it is intended to be… this will alow the researchers to see how useful it is, hone it and perfect it!
If you’re not currently pregnant but would like to support this kind of work then please consider donating to one of the charities pushing the research agenda either, click here for more info on donating.
Blog archive2016September 2016 (3)August 2016 (1)July 2016 (1)June 2016 (3)April 2016 (2)February 2016 (2)January 2016 (1)2015December 2015 (2)November 2015 (1)October 2015 (1)September 2015 (1)August 2015 (1)July 2015 (3)June 2015 (5)May 2015 (3)April 2015 (3)March 2015 (3)February 2015 (5)January 2015 (3)2014December 2014 (1)November 2014 (4)October 2014 (4)September 2014 (3)August 2014 (4)July 2014 (3)June 2014 (2)May 2014 (5)April 2014 (5)March 2014 (5)February 2014 (4)January 2014 (5)2013December 2013 (6)November 2013 (6)October 2013 (10)September 2013 (5)July 2013 (1)June 2013 (1)April 2013 (1)March 2013 (2)February 2013 (1)2012December 2012 (1)June 2012 (1)February 2012 (1)2011December 2011 (1)November 2011 (1)October 2011 (1)September 2011 (1)July 2011 (2)June 2011 (1)May 2011 (6)April 2011 (1)
In conjunction with Pregnancy Sickness Support and Plymouth University I am looking for women who have been treated for HG in the last 2 years in the UK to take part in a research survey. Please click here to find out more.
I am mother of three beautiful children and wife to a fantastic and supportive husband. I am a nurse, a farmer and a trustee for Pregnancy Sickness Support. I love working hard and spending time with my kids.
About this blog
Information and support for pregnancy sickness and hyperemesis gravidarum. Views are my own and do not represent those of any other organisation. Information provided here should not be a substitute for medical advice. My aim is to raise awareness and encourage sufferers to know they are not alone.
Explore past posts:2016September 2016 (3)August 2016 (1)July 2016 (1)June 2016 (3)April 2016 (2)February 2016 (2)January 2016 (1)2015December 2015 (2)November 2015 (1)October 2015 (1)September 2015 (1)August 2015 (1)July 2015 (3)June 2015 (5)May 2015 (3)April 2015 (3)March 2015 (3)February 2015 (5)January 2015 (3)2014December 2014 (1)November 2014 (4)October 2014 (4)September 2014 (3)August 2014 (4)July 2014 (3)June 2014 (2)May 2014 (5)April 2014 (5)March 2014 (5)February 2014 (4)January 2014 (5)2013December 2013 (6)November 2013 (6)October 2013 (10)September 2013 (5)July 2013 (1)June 2013 (1)April 2013 (1)March 2013 (2)February 2013 (1)2012December 2012 (1)June 2012 (1)February 2012 (1)2011December 2011 (1)November 2011 (1)October 2011 (1)September 2011 (1)July 2011 (2)June 2011 (1)May 2011 (6)April 2011 (1)