Journey into the world of hyperemesis gravidarum...
Tackling the Biggest Taboo
Jump to the survey
I speak to women day in and day out about hyperemesis gravidarum and the all consuming impact it can have on their lives, not just during pregnancy but for many years afterwards too. The biggest taboo has got to be the issue of termination for the condition. To say it's common would be an understatement. These are not terminations of unwanted babies. Many of these are babies which were planned and tried for within happy and healthy relationships. Some are babies which took months, years and even IVF to conceive. Others are babies conceived by “surprise” yet none the less wanted and welcome.
So why are they being terminated? Well, I have my theories on the subject, specifically around a lack of healthcare professional knowledge and understanding of the condition, an unwillingness to treat and a sheer lack of compassion. But to get to the root of the issue and to understand the situation on a deeper level so that we can look to the future and improve care and treatment for this fatal condition we need to know more about what women are experiencing.
In my new role as Chair of Pregnancy Sickness Support I've established a new working relationship with the British Pregnancy Advisory Service (BPAS), who are the leading independent abortion service provider in the UK. Together we want to tackle the issue of “unwanted terminations” for treatable medical conditions. Too often women faced with taking medication in pregnancy, not just for hyperemesis but a whole host of conditions, are told that “nothing is safe” and “if you can't put up with the symptoms you'll just have to terminate”.
So here is what I need you to do... if you have suffered hyperemesis and you have terminated a pregnancy, whether or not it was the main reason or just a contributing factor, please fill in this survey as fully as possible. The more terminations you have experienced the longer it will take but for one termination it should just take about 10 minutes. It's completely anonymous so you can't be identified.
We hope that by shedding light on this sensitive issue we can look to educate healthcare professionals and the wider public so that women faced with difficult decisions about the future of their pregnancies and the risk/benefits of medication can do so with full and accurate information. So that women do not end pregnancies they actually want to continue because of a lack of knowledge, understanding and support. So that wanted babies are not lost to old wives tales and stigma.
The more women who speak out now the greater the hope for the future, for our daughters and our son's partners. The more responses we get the louder our voice and the harder it is to ignore.
Update: Outcomes from this survey...
Thank you to all who took part in this survey. So many women shared their heartache and distress and gave honest accounts of what happened to them... it was deeply humbling and I've written more to you all here.
The results from the survey were published via PSS and BPAS and is available here.
The survey was met with incredible media coverage including the front page of The Times, an interview with me on Woman's Hour and a double feature on BBC Scotland.
Almost all the major papers covered it in print and online. Here are a selection of a few of them:
NHS Choices
Telegraph
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The Unempathic Society
Why, in 2015, is it still okay for doctors, midwives, nurses and society in general to treat sick people like idiots?
Why is it that just because someone hasn't suffered something they can't imagine how horrendous it is for someone else?
I've never had a broken leg, but I can begin to imagine it's painful and debilitating! I've never had cancer, but I can begin to imagine it's terrifying, traumatic and painful! I've never experienced a still birth, but I can begin to imagine it's utterly devastating and life changing. I haven't yet experienced the loss of a loved one, yet I can begin to imagine how hard it is to move on and see the sun again.
I've never had food poisoning; I've never suffered mental illness; I've never been assaulted or raped; I've never been in a major car crash; I've never been in a war zone; I'm not diabetic or epileptic or asthmatic; I don't have a congenital disease or a serious allergy; I've never had anaphylactic shock... Yet I can begin to imagine that all those things are scary and difficult things for other people. Things that can take time to come to terms with and can have a major impact on their lives.
And I certainly don't doubt their existence. Nor would I presume that I can ever fully grasp the personal impact those things have on another individual.
Hyperemesis can turn a women from a healthy, happy person, enjoying work and looking after her herself and her house, excited about being pregnant, perhaps newly married, into a shadow of herself throwing up 20+ times a day, bed bound, unable to eat and drink, dehydrated and rapidly losing weight. Yet people all around her will be thinking that she is just making it up, attention seeking, making a fuss, weak, mentally ill etc etc.
Why is that? Are we raised to be so utterly unempathetic? Or are we raised to think deep down that most women are neurotic and melodramatic and prone to making a fuss over nothing?
I don't go around claiming that a medical condition doesn't exist simply because I've never had it or heard of it! “You have what? Oh I've never heard of that so it can't possibly exist!”
I wouldn't tell a pregnant women who has broken their ankle that they should just get on with it and walk on it because when I stubbed my toe that's what I did and it was fine. They should shun modern, evidenced-based science and certainly shouldn't use that big cast because it “might” cause problems for the baby and if they're in pain they should try homeopathy and positive thinking instead of pain killers. Of course there is plenty of evidence that a plaster cast won't cause problems for the baby and there is no (proper) evidence that homoeopathy will help with the pain with anything other than the placebo effect. In the same way there is plenty of evidence that anti-emetics won't harm the baby and no evidence that homeopathy or acupressure helps hyperemesis gravidarum.
But a broken leg shows up on an X-ray whereas HG is soooo much harder to diagnose... you actually have to trust that the woman isn't, in fact, sticking her fingers down her throat and deliberately starving herself to produce ketosis and weight loss and dehydration. That takes a lot of trust right? Cos sensible women with jobs and mortgages and husbands and other kids, they do that sort of silly thing ALL THE TIME!!!
What the hell is wrong with with people that the life of a woman is worth so so so much less that that of a 6 week foetus? Even if you personally believe the two lives are equal why are mothers left to rot and suffer and develop life long complications and risk their own lives and become mentally ill just because they are pregnant. Why are they treated like idiots who are making themselves ill "for attention" or "the drama". Why are they made to feel guilty for “risking their baby”... Don't those silly women know they just need to eat?
Is it that hard to imagine that she simply doesn't have a choice, that the food won't stay down and forcing it in just makes it worse?
And then there are the doctors who would rather a wanted, tried for baby was terminated by the devastated mother than go to the effort of looking up the easily accessible research about the safety of medicating for the condition. And they do this wonderfully clever thing whereby they make the mother feel like it's her fault for “not being strong enough” or “She is too selfish to put up with a bit of sickness like everyone else does”
The ironic thing about the “it's not safe to take medication” card that as soon as you look at the evidence (which is what healthcare professionals are meant to do) then it's pretty clear that by leaving the mother to suffer and rot you are also increasing the risk of harm for the baby! So because people “don't believe” the woman they risk both her and the baby's health and somehow the mother still gets the blame and is made to feel guilty.
And then there are the bosses and work colleagues who think their female employee is just after some time off work. The woman who hasn't been of sick for years, is always on time and stays late and enjoys her job and is sociable with colleagues, now she's pregnant she thinks she can have time off for any little complaint. Jeez... If you want some time off work then fake some other illness, not the one that actually requires IV fluids to stay alive and that risks your long term physical and mental health and your wanted, tried for baby!
Why would a woman, who risks losing her job and house, take months off work for an illness she could fix with a ginger biscuit and some fresh air?
Think about it people... maybe it's because it's really, truly, honestly a really awful and debilitating condition, which is not self inflicted and can not be overcome with positive thinking??
Why would a woman who wanted a baby so much that she has been through 2 years of multiple IVF treatments to get pregnant then consider a termination because she is so seriously ill and suffering in such an unimaginably awful way? Um... Maybe because she is suffering an actual horrific illness but her doctor doesn't believe her because "his wife had morning sickness and just got on with it".
So here are some more things to think about:
- Did you know that people who don't have pneumonia but do have a mild cold don't need to take antibiotics?
- And did you know that people who don't have diabetes but do really like sugar don't need to take insulin?
- And people who don't have a broken leg but did stub their toe last night don't need to wear a cast for 6 weeks and take pain killers?
It's true! And also women who don't have Hyperemesis Gravidarum but do have morning sickness don't need to take antiemetics or get IV rehydration!!!
COME ON SOCIETY!!! Is it really that hard to believe that just because you haven't personally heard of a condition that it doesn't exist? Is it that hard to show empathy to someone going through something that you haven't personally experienced? Is it really necessary to question the validity of your partner/friend/daughter/sister/employee's symptoms just because she is pregnant, when you know that normally she is a happy, busy, strong and sensible women?
And you know what? This post doesn't just go for Hyperemesis Gravidraum... There are so many conditions which people wilfully choose to misunderstand and stigmatise. Ones with clear physical symptoms and others with more hidden impacts.
Tell me... Are your really that arrogant that you think you've heard of every disease in the world? Are you really that self centred that you can't put yourself in someone else's shoes and see their suffering? Are your relationships with people so one sided that when their circumstances change and they need help and support that you turn on them and accuse them of melodrama? Are you so insecure and unhappy in your own life that you show jealousy towards people who need a little extra care and love because they are seriously ill and suffering?
I hope you are not but from speaking to women with a serious medical condition who risk losing their babies day in day out it can sometimes seem like everyone is like that until they go through something serious themselves... But it doesn't need to be like that.
If you are guilty of any of these traits then make today the day you change... Decide to open your mind. Haven't heard of something? GOOGLE IT! Don't make random useless suggestions. Don't know how to help your friend? ASK! "What can I do to help?" Is possibly the most wonderful thing you can say to an ill person. Stick up for misunderstood conditions! If someone is saying something ignorant about your partner/friend/colleague and their medical condition then CORRECT THEM! Coming from someone who doesn't have it can often get through far more effectively than from the sufferer themselves.
THANK YOU for reading this post... Please share it far and wide and let's make the world a more accepting and understanding place for people suffering stigmatised illnesses. And lets make sure that evidence based medicine starts to prevail, even in pregnancy!
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Comments
I don't agree with Drs/nurses treating these women like idiots!
Yes, we see life threatening illness daily, so sickness or hyperemesis gravidarum will not be triaged as an emergency, which it isn't, but it is still treated regardless.
Stop bashing healthcare professionals as we do a fantastic and VERY hard job prioritising emergencies and treating everyone else in between for little thanks!!!!
Yvette, 16th February 2015
Spewing Mummy replies...
Hi Yvette, I'm sorry you think I'm just bashing HCPs and as a nurse myself I agree they do a stellar job most of the time. I also spend a lot of time defending the actions of HCPs, highlighting excellent one and their wonderful work and bestowing plenty of thanks on them - I've produced certificates of excellence which women frequently give to their HCPs in recognition of how well they have been treated.
However, the fact you think HG shouldn't be triaged as an emergency shows how lacking your education is on the condition! It is in fact frequently life threatening and women do still die from it if treatment is not given. Prior to anti-emetics and IV's it was the leading cause of death in early pregnancy. Why would you not triage a woman as an emergency if she has not kept any fluid down for 5+ days, with 4+ ketones, significant weight lose and malnutrition, not pu'd in over 24 hours, confused and weak? Because ultimately, deep down, you probably think it's self induced and she could just make more effort to drink or try ginger! If a man presented with the same symptom set due to food poisoning he would be taken more seriously. The fact a wanted foetus is a stake seems to be irrelevant and adds to the "selfishness" of the mother for not drinking.
The post wasn't just about HCPs but society as a whole... your comment highlights just how true the post is and how lacking in education on the condition our HCPs are and how vital it is I continue to educate them.
I know plenty of women who have ended up in ICU and HDU because their treatment was so shocking they became life threateningly ill. Complications of HG such as wernicke's encephalopathy, DVT/PE, ruptured oesophagus, depression, PTSD and obviously severe dehydration, to name but a few, are all life threatening conditions. They are also all preventable in most cases (not all) as long as HCPs recognise the severity and treat pro-actively early on.
I can tell you it is a fact that women with HG are treated like idiots on a daily basis by HCPs. Even HCPs who are suffering get treated like idiots by other HCPs and I have plenty of evidence to prove it. Admittedly there are also lots of wonderful HCPs out there who don't but they are far from the majority at the moment. It will take a seismic shift in public attitudes before this situation is corrected and until that day I shall continue representing the voice of women who experience this.
Brilliant! I personally didn't suffer from much sickness during my pregnancy but my sister in law (who was pregnant at the same time) did. I really felt for her not being able to enjoy her pregnancy as I did because she was constantly sick. She did get medacation from our local doctor but was still made to feel that she should use it sparingly and as a result she most often suffered through, only taking anything when she hadn't managed to eat anything for a few days.
There are so many things revolving pregnancy that people are incapable of understanding. In my case it was a emergency c-section. And no one seemed to understand my feelings of failure as i wasn't able to give birth to my son 'properly'. Everyones was answer was 'yeah but at least you're baby is healthy and happy'. My feelings were completely dismissed by people and doctors completely ubable to empathize. I was lucky enough to find a great online support group of women who felt the same as me and they helped me through it. Not my doctors, not my family, not my friends, a group of faceless strangers on the internet.
Awareness for all these sort of issues needs to be raised and this article is a great start.
Stephanie, 16th February 2015
I'm also a health care professional (paediatric icu nurse ) and I was treated like an idiot. It was insinuated time and time again that I must have a mental health problem and that I didn't want my baby. I was even told by one midwife that I did not have hg. My treatment by the Nhs was shocking. Beyond belief actually. So much so that I will not be having another baby as treatment, medical care and any sympathy and conpassion from my health care professional colleague was severely lacking. I couldn't believe the way I was treated by 95% of people. Yes there were a few, a handful who treated me well it but low and behold, those health care professionals had had hg themselves or had a family member or friend that had suffered hg. The Nhs is severely lacking in knowledge about this condition and it is way behind other counties in it's treatment of this condition. So maybe you've seen good care yvette but I certainly didn't !
So carry on with your great work and publishing Caitlin and thank you always
, 17th February 2015
yes!! Every day that I didn't have to go to hospital for fluids I went to work and my work were like so you're being sick that's pregnancy. A colleague of mine is pregnant and has been sick and has taken three months off which I should've done. But instead I went to work I wish I hadn't now as there is absolutely no awardthank you for writing this it does make people feel better, well it makes me feel better to read this and know I'm not alone
Laura , 17th February 2015
Thank you so much for trying to bring awareness to this horrific condition, everything you say is absolutely true! I'm 15 weeks into my second hg pregnancy and so far I've only met one kind, understanding nurse who didn't treat me like a hypochondriac. My husband and I were so grateful and kept thanking her profusely because my treatment by doctors, nurses and midwives up until that point had been dreadful. I just kept being told to eat ginger biscuits and little and often. As if I hadn't thought of that before! And they'd get irritated that I couldn't give them a urine sample on admission because I was so dehydrated. I'd be left so full of rage if I'd had the strength im sure I would have punched someone!
Change needs to happen so keep doing what you're doing!
Lara, 17th February 2015
My Friend has just face booked me this article as in currently suffering my fb statuses are quotes like please just leave me to sleep this entire pregnancy and wake me up when it's done . Iv had enough although this hasn't been diagnosed yet for me I have seen a midwife once for my booking appt I'm now 12 weeks my doctor has signed me off with morning sickness for 1 week and gave me anti sickness tablets , yet I'm hearing from a work colleague they Ent happy with me being off sick . I'm gettin no support anywhere I'm still in bed now at 3:30 pm whilst my children and partner are down stairs it's half term and I can't go out to take them anywhere as I need to stay by the toilet I'm getting sore throats from the acid burning my throat as I'm sick my stomach hurts from the wretching and most of all I never planned this baby I was the one who argued in my partner that we was careless enough and I'm having this baby can you imagine how I feel now I had to deal with the shock pregnancy and now I'm dealing with all this I wouldn't abort that is not an option but I do feel as though I never really wanted another baby and now I'm paying the price for it , I had a terrible first pregnancy 5years ago with constant being sick then 2 further pregnancys after I was fine now this one is the same as my first baby , it can't be down to gender as I have both sexes already I'm just unlucky this time ?
I do feel misunderstood no one had any sympathy or any understanding how I feel anyone would think that yes I'm the one doing it as I enjoy it the way I'm often told to pull myself together or get over it .
Sorry for the long post I'm letting off steam to maybe people who will read it will understand how I feel
Just want these next 6 months to hurry by
Emma, 17th February 2015
Spewing Mummy replies...
Hi Emma,
I'm so sorry you're suffering so badly. Please get in touch with me via the charity Pregnancy Sickness Support and I can help you. There are safe and effective treatments you can take and there is support available. We can match you with a volunteer who has been through it as well and they will support you for the next 6 months. You are not alone and there is help available. Caitlin x
i was treated by one particular doctor like an idiot but my midwife was brilliant and put me in touch with my local hyperemis clinic although most of the nurses that staffed it haven't a clue how desperate I was. It saddens me that Yvette doesn't think this is a serious condition but it just shows how ignorant some people are to it and have no idea what it's like to have to be hydrated with an I.v and take anti sickness meds because you can't keep a thing down. Is dehydration and starvation not serious then? Then again probably not, I was probably only doing it for attention!
Emma G, 17th February 2015
jeez this takes me back 6 years and then some! sick 20+ times a day almost from the day i found out i was pregnant. not taken seriously by anyone (least of all my not pregnant and not sick boyfriend thank you very much grrrr) and only diagnosed when i was admitted to the hospital when i went into labour (was treated horrendously during that too but that's another story).
3 years later i fell pregnant again, and boy did i remember EXACTLY what i was in for. sure enough i went to my first midwives appointment, did a urine test and i was sent straight to the hospital where i spent 3 days on an IV, was put put on cyclazine - and low and behold; not so much as a whiff of nausea for 3 blissful days.
my very sheepish boyfriend spent that weekend being reminded very loudly whenever anyone was in earshot that he was going to eat his last words to me before that midwives appointment; "you're just pregnant, not dying."
well guess what, bright spark; being "just pregnant" could have fecking killed me, no thanks to you!
Natasha, 17th February 2015
How appropriate, that Yvette a medical professional should prove your point! To say that HG is not a medical emergency is disgusting and 100% wrong! God help any sufferer who has her as a nurse or doctor. I hope she never has HG and is left on a stretcher in A and E barely consious thinking she is dying, While being told she is not an emergency!
Emma, 17th February 2015
Thank you so much for this post!!!
I'm currently 36 weeks pregnant with my first HG pregnancy and I have suffererd continuously since week 8.
After a 17kg weight loss between week 8-12 my GP advised me that he "didn't understand young women today and I should stop being so vain and eat"
When I collapsed on the floor due to the muscle deterioration and being to weak to stand, I was taken to the hospital and informed by the nurse "she'd had 3 babies and never once came to hospital for fluids, being pregnant isn't hard and if I didn't want the baby just terminate"
I've been gingered, crackered... Told to try sea bands, flat lemonade, get out and work, to stop dwelling on it, to cheer up, get some sun, to stop whinging and so on and so on.
At 12.5 weeks I was fortunate to find a new Dr who whilst never having treated the condition before, he was very understanding and had sincere empathy for my situation, with great pain in his face he advised that with me being so violently ill I may lose the baby and he also suggested termination on a number of occasions as my body could just not handle this life threatening and completely debilitating condition. At 15 weeks I was assigned a midwife who completely 'got it' I've been in and out of hospital this whole pregnancy, poked and proded and had many tests done as having HG causes all sorts of health conditions to arise.
I can't say I enjoy pregnancy but I am thankful I have survived and will have my precious bundle at the end 😘😘😘
Thanks again for this post, I've shared it far and wide xxx
Hannah, 17th February 2015
Hello! And thank god I've found a recent post for this!
I suffered with HG last year. I fell pregnant and a week later I was in hospital as I was severely dehydrated. Spent a whole week in hospital and then when I did leave I sadly had a miscarriage a week later. I only got to six weeks and I was really ill. My HG started off with a really bad back not sure if this is common. The bad belly then came and the neusea. Moving from the bed to the toilet was just horrible! I took myself to the hospital a couple of days later when I couldn't take it anymore. (I didn't let anyone know as I thought they would just think I'm being stupid) when I told her my symptoms and she checked me over (blood pressure etc) she said I was absolutely fine. After asking me to go do a urine sample she told me I had to be taken up to a ward and I would have to stay over night. But if she hadn't have taken my urine she would have sent me on my way!
After trying now for 5 months I am now pregnant! Probably only 4 weeks but today I woke up not feeling great. Couldn't stand the smell of my puppy! Managed to bath her and I still can't stand the smell of her. Please tell me this isn't starting all over again! I would love just a normal pregnancy!
Toni, 18th February 2015
My GP told me they couldn't do anything until I was actually dehydrated, there anti-sickness medications I could take but I didn't really want that (implication being that it could be bad for baby) and that I should just try harder to drink. If I had 'tried harder' in the way she meant to drink I probably would have been hospitalized as I would have been sick constantly. I found the GPs attitude incredibly upsetting and felt like she thought I was making a fuss about nothing.
The midwife who weighed me and announced I'd lost weight just seemed puzzled by the whole thing, especially when I said I couldn't drink water. By that point I could manage some fizzy drinks which she didn't seem pleased about (obviously the priority!), suggested sparkling water. Nobody seemed to understand the concept of not being able to keep water down.
Caroline, 18th February 2015
I had hg with my first, thought it was horrific but battled through it. Pregnancy number 2 was hell on earth. Im also a midwife but like most other people was treated as though it was in my head, my gp told me to eat a biscuit before getting out of bed...really that stops you being sick 20 times in an hour?!?!? I lost 2 1/2 stone by the time I had my daughter, had suffered horrendous mental health issues through the pregnancy which also needed medication. I (stupidly??) wanted another baby, i was terrified of hg again. We decided now or never and conceived when my 2nd was 8 months old......miracles do happen and i think i was sick once with my 3rd, a boy. So much more needs to be done to highlight the seriousness and misery that is hg.
Becky, 18th February 2015
I found on the whole HCP didn't want to know, and just dismissed what I was going through. I, sadly, believed the GP who told me I should just essentially put up and shut up.. so that's what I did for months, I barely left my bed. No medication (they stopped medication after I tried two types and neither helped - and I was too ill to use a computer to google the other support out there.) I honestly think I needed medication and probably IV as some days I didn't go to the wee at all (sorry for the tmi) I didn't know any better and sadly the people who should have known better (HCP) didn't know any better either, or didn't care. I lost over 10kg whilst pregnant. I feel totally let down about the whole issue. And to add insult to injury I have been back to (a different dr) to mention the subject of trying again and preemptive medication etc I was told that it wouldn't help and that I 'probably won't get it again', wouldn't discuss the information I had found (from the pss website) and was so dismissive I came home and cried.
I think it is appalling that women are treated in this way.
Jenni, 26th February 2015
Thank you for this article. My care in the main was good but I remember one dismissive consultant who tried to take my meds prescribed by my own consultant off me. I stuck up for myself thankfully and said my consultant wants me on it (ondansetron). Anyway, I just read that comment by Yvette. When I was triaged in a&e;, at just 3+ ketones I was sent straight through and hooked up to fluids, no questions asked. So at least in my local hospital, it was treated as a medical emergency. I can't believe someone thinks HG is not a medical emergency, and especially a HCP! Oh dear!!!
ruth , 9th March 2015
I really wish I had read your blog or heard of your charity during either of my two HG pregnancies! One was ten years ago and during last years pregnancy I was just too damn sick to even think of googling support groups!
Wouldn't it be wonderful if all HCP could a) acknowledge the condition and b) point us in the direction of these resources!!
It took me ten years to contemplate going through a pregnancy again and time is not on my side to wait that long again! How do you ladies cope with 9 months of HG with toddlers and young children? X
Gemma, 19th March 2015
During my first pregnancy I was laughed at by a GP told to just get on with it. I lost over a stone which left me at 7stone. I was hospitalised before being sent back home to suffer in silence i was way too weak to complain. An so by 20 weeks pregnant I finally wasnt sick all day every day and i finally began to gain weight. After this i fell pregnant again and terminated as it waa just too much to bear. 2 years late i am now pregnant again i have found support from a male friend. He has told me he would be there until he feels i no longer need help. He goes shopping for me, shamefully helps with cleaning, looking after my toddler, taking me to hospital, coming in the mornings to help me out of bed and feeding me toast until my hyperemesis is stabilised (if i am lucky) It has been a fight and without all this help there is noway I would of had a some what better experience of pregnancy. I still have more bad days then good but the fact I have some good days is an accomplishment for a HG sufferer. Im now edging on 12weeks so hopefully my hormones will stabilise and allow me a better quality of life during the second and third trimester. The only way i have survived this is through dried toast for breakfast. Toast with jam and butter. Tea and herbal tea. An exciting day for me is maybe a moose on an evening when im not feeling like im sailing in the sea lol. This diet isn't good it leaves me tired and moody and sometimes i do throw it up. I am also taking cyclizine which helps some days if I time things properly and if my body behaves. I am defiantly not as bad as i was in my first pregnancy and i believe a lot of it has to do with the around the clock care I am receiving by someone who I can only describe as an angel a real god send. I nearly terminated my pregnancy because I didn't see a light at the end of the tunnel. But he has been such a good friend. Mean while the child's father, also the father of number 1 is kindly spreading that the child is another mans. We are not together anymore. An this is why! such a lack of support and understanding. He tried but when he made comments like 'your not that ill' it just angered me so much i could not tolerate his support so sad after he seen me so ill during this pregnancy that I was admitted to hospital after 5 days of not eating and not keeping down fluids. He actually thought I should turn down such a god send in order to please him. Im suppose to be the insane one with the dehydration and hunger. But he and the rest of the people he has so kindly told who dont know how I've suffered share similar views. As if hg wasn't punishment enough. Anyway to anyone who wants more details on what i think is a somewhat a form of treatment please get in touch! We can only try. Trial and error is the way forward in any illness in my opinion. Sorry for the life story!!
Nat, 30th March 2015
These stories are so heartbreaking. I need to tell you about my GP surgery (Grosvenor, in Crewe, Cheshire) and my local hospital (Leighton, in crewe, Cheshire). I saw a few different GPs at my surgery over my first pregnancy and EVERY SINGLE ONE was supportive, sympathetic and willing to prescribe anti-emetics (we tried a few different ones in the end). I was admitted straight onto a ward after simply phoning my GP twice, and prescriptions were arranged over the phone. While admitted the staff at the hospital treated me with respect and thoroughly looked after me.
I approached my GP about trying for another baby and how I could prepare for another HG pregnancy and she promptly referred me to an obstetrician (despite not actually being pregnant) and promised me that she would support me in any way she could. The consultant obstetrician was wonderful and again I felt respected as a grown woman who has survived this horrible thing but is prepared to do it all again. My hospital now offer IV treatment as an outpatient too. I am 4 weeks pregnant and, while I know it's coming (feel decidedly green already), I am positive about the care that I will receive. So sorry that the majority of ladies are getting poorly treated but just wanted to share my experiences too.
Vicky Harris, 30th April 2015
This is a great article, thank you for making me feel better! Whilst I have found some lovely nurses on the maternity ward where I was (finally) admitted for severe HG, I'm afraid to say I more often than not was treated like an idiot, like it was all in my head and i was being selfish for not eating. In desperation after many separate requests to medical professionals, 5 days of constant vomiting, weight loss of 8lbs in a week and 4+ ketones, I got to speak to an 'advanced nurse practitioner' at my surgery who told me to try ginger and call back if there was no improvement. At that point I was totally desperate and asked for anti sickness medication and was told it was not good for me or the baby to take medication. She reluctantly prescribed me two days of tablets (over the phone, no physical checks of my health) but told me I should not be taking them as it could harm the baby. The following day I was admitted to hospital due to being in such a terrible state and spent time on IVs etc. Even now I am left to manage at home alone with no follow up appointments or monitoring of any sort. I feel totally alone and it will take me a long time to regain the trust of my Gp surgery. Your blog has been a lifeline to making me feel human again, thank you so much
Gill, 16th October 2015
The Things People Say!
Following the launch of Hyperemesis Gravidarum - The Definitive Guide
(HGDG) and it's amazing reception in the HG Community I've now got time to focus on a couple of other projects I've had up my sleeve for a few years.
HGDG is very much a manual for the condition, a serious guide to the causes, treatment and care for the condition as well as self help and further signposting. While I tend to write in an “accessible” it is meant as a sort of text book for sufferers, healthcare professionals and families.
Now I want to do something a little more creative... more of a mental survival guide if you will... something that will make women feel less alone, more understood and stronger united with the rest of the HG Community. I want it to make women laugh, cry, scream, have hope, feel bonded and ultimately more able to cope with their experience. Hopefully it will also provide insight for people who haven't suffered too and will be essential reading for HCPs caring for our community.
But I need your help... more research!
CLICK HERE TO FILL IN THE SURVEY
I get so many comments and emails and I speak to countless women on the phone while running the PSS helpline, but I need them in a format I can work from if this project is ever going to happen.
Please can you take some time to fill this survey out. I've tried to make it a little bit fun so you can really let loose on the things people said to you during pregnancy. Take it as a chance to vent! You can do it with your partner if you want (unless of course he/she said the awful things! In which case I'll send you a copy of the book when it's out so you can shove it where the sun don't shine!).
It's so wonderful we have so many women getting involved in furthering the research and knowledge about hyperemesis... the more decent published material there is in the world the more the general public's perception of the condition will start to shift. In a few years people will have no excuse for never having heard of HG or for thinking it's “just a bit of morning sickness”. Attitudes like that will become extinct and replaced with awareness and understanding, empathy and helpfulness. Women being prescribed medication will be given proper information about the treatments so that scaremongering by miss-educated doctors and unscrupulous journalists will be a thing of the past. Women may still suffer HG but they won't have to fight for treatment and care for their life threatening, torturous and terrifying condition.
In the coming weeks I'm going to be tacking a much bigger subject... it's a massive taboo issue but it needs addressing. It's the fact of women terminating a pregnancy for HG, or rather - it's the fact of doctors terminating a pregnancy for HG instead of treating it. I'm going to be doing a big survey for those who have been through it and that's why I'm giving advanced warning. I'm hoping as many women take part as possible (anonymously of course) but I didn't want to spring it on you... I wanted to give you time in advance to think about whether or not you would want to take part to further awareness and to be ready for the survey. I already have a collaboration with a big organisation looking to collaborate on this issue and changing things for HG sufferers, but more on that next week...
In the meantime, this survey is meant as a bit of fun really... a chance to vent and tell me all the most awful and ridiculous things people have said to you... really go for it!
CLICK HERE TO FILL IN THE SURVEY!
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I forgot to include some and it won't let me take the survey again - it's all the Kate Middleton comments!
"Ooh, just like Kate Middleton - how posh!" ... was something that was actually said to me. Yes, very posh how I'm covered in vomit and my own pee from having heaved so much.
"It went away for that Kate didn't it, she's doing engagements and things now"
"It's trendy to have now isn't it!"
Hayley, 17th February 2015
Spewing Mummy replies...
Ergh.... that makes my skin crawl and smoke come out of my ears!!! TRENDY???????????
Helping pregnant mums get the right medical care
As some of you know I've been working hard to develop collaborative relationships between organisations such as PSS and the Pregnancy & Medicine Initiative. There is only so much individuals and small organisations can do on their own and by pooling our resources and working together we can reach larger audiences and have a greater impact nationally and internationally. I've featured a post by Caroline before and since then our working relationship has strengthened further and last week saw the launch of a joint fundraising and leaflet distributing project to get information about medication in pregnancy to the women who need it. Over to Caroline to tell you more about this important and exciting project:
When I was pregnant with my first child, I often felt vulnerable and under-informed. Whenever faced with a medical condition, even the smallest (skin rash, a bad cold, nausea…) I would turn to friends or the internet for recommendations, and got very conflicting information. And more often than not, the advice was “wait it out” – doing anything other than drinking tea with lemon might harm the baby.
In my case, waiting it out was a reasonable option, and while I felt miserable for a few weeks during my pregnancy, I didn’t face any serious effects from these minor issues. But what if I had faced a major health issue, I asked myself?
Much too often, women who face a serious medical condition while pregnant are thrown into a whirlwind of contradictory advice, and need to make important decisions about their health without proper information or support. Very often, they even receive conflicting medical opinions from specialists and obstetricians, and must make the difficult choice of following one or the other’s advice, at the risk of being stigmatised.
What if we could help women in this situation ask the right questions to help them make these important decisions?
At the Pregnancy and Medicine Initiative, we believe pregnant women have the right to mare informed health-related decisions and have the right to access the medical care they need. We’ve developed a kit that can help facilitate the dialogue between them and their doctor(s), so they can get answers to their questions, or at least encourage their medical team to look further than the obvious solution.
We need your help. The kits were developed with the help of our Advisory Board, made up of medical experts in the field of oncology, bioethics, rhumatology, obstetrics and pediatrics who are involved in the issue of pregnancy and medicine. We are looking to raise funds to distribute these kits across hospitals in the UK so a maximum of women can benefit from them.
Will you support us? £10 will help us reach about 150 women. In addition, part of the proceeds will go to our partner charities, Pregnancy Sickness Support and Mummy’s Star, who are doing fantastic work supporting pregnant women facing a serious medical condition.
Thank you in advance for helping us. Please vist our fundrazr campaign to find out more: https://fundrazr.com/campaigns/cvu10/ab/c4RId4
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Brushing my teeth still makes me retch... and other post hyperemesis phenomena
When the toothpaste foams just a little too much, or I swill my mouth and spit in the sink... sometimes it still makes me retch.
When I'm at someone's house and they make a cup of tea without mentioning it has earl grey in it... I'm trying not to retch.
When I clean the family loo and look down in the bowl... I have a sense of over familiarity, it induces nausea.
When I wake in the night to my children's needs... my stomach does a flip, a familiar sense to vomit urgently.
When my children or dog are sick... I can't help but retch and gag.
When my children throw up in a bowl... I have to hide it in a corner for my husband to dispose of after work.
When we drive down certain roads... it is landmarked for ever by the places I threw up.
When I look at my wrists... I still see the scars from the pointless acupressure bands I wore to prove to the world I was at least trying to "help myself".
When someone mentions ginger... I'm filled with rage and anger.
When someone asks about a cure or the cause for hyperemesis gravidarum... I'm filled with sadness that neither are yet known.
When I look at my children, sleeping in their beds and I stroke their soft faces and kiss their little cheeks... I know it is still worth it.
When I post my blogs and answer emails and calls from desperate women... I know I am helping others.
When I write articles and publish research... I know I am changing the world.
When I look at my life... I know I am changed... because of hyperemesis gravidarum... and that's okay.
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Yes! This. Exactly this. Plugholes in sinks, trying to clean the toilet, too much toothpaste, my children or cat being sick, vomit landmarks all around my hometown & Tottenham Court Road where I used to work, cannula scars on my wrists where they ran out of places to put it. All of these things still affect me 3 years after my second HG pregnancy.
The Pie Patch, 3rd February 2015
Spewing Mummy replies...
LOL... so many little things! Our town if for sure landmarked with the places I threw up.
I suffered from HG with both my pregnancies. My kids are now 11 and 14 but there are STILL things that make me nauseous by association... The Weakest Link TV show (cos thats when my hubby would cook tea, the smell setting off another round of vomiting)...plain water (cos I was told by a nurse in one of my many stays in hospital that everyone can keep that down, right? Erm, no) ...and our local church (cos I spewed in some bushes before realising that I'd just christened the bottom of a memorial plaque. The mortification still lives with me)
There wasn't the same support, understanding or awareness when I had HG. I salute those that can offer support to help to fellow sufferers now!
Avril, 3rd February 2015
Spewing Mummy replies...
Well if you ever want to get involved Pregnancy Sickness Support is always keen for new volunteers!
Yes! A certain make of squash, even the thought of it makes me want to retch, I threw too much of it back up again. Countless tiny round scars on the backs of my hands and wrists from the drip needles. X
Marie, 3rd February 2015
Spewing Mummy replies...
Oh yes, there are a few drinks for me... I think because they came back so quick they would still taste the same so the memory impact was stronger!
The now sad and unloved incredibly expensive hand soap that was a wedding present. I used to wash my hands after being sick with it, and now the smell makes me sick.
It's be consigned to the garage for my husband to use!
Becca, 3rd February 2015
Spewing Mummy replies...
Oh dear :( I can't stand the palmolive hand soaps anymore as we had it in my first pregnancy. Luckily it's not a hardship to dislike it!
the smell of certain foods and aftershaves that I now forbid my partner to wear, are additions for me, also I had to sell my car after I had my daughter and throw out a handbag when pregnant with my son. And as a complementary therapist at least I am able to sympathise with other HG mums who come in looking for help, just unfortunate that all I can do
Lynne Kelso, 3rd February 2015
Spewing Mummy replies...
Oh yes, I'd forgotten about my husband's deodorant! Can't remember what brand but if another man is wearing it now I can smell it!
Dioralyte - makes me wretch and want want to throw up - as they made me try that to rehydrate me LOL like I could keep it down :-/ and that is 22 years later!
Nichola Hepple, 3rd February 2015
My boyfriends body spray, talking, moving,the smell of random things, sights or sounds. Anything triggers my HG and i cant cope. Iam 10 weeks and been in hospital 8 times scince i found out at 4 weeks pregnant. I have the drip and iv anti sickness wich helps for 1 or 2 days then am back to being ill again :(
KAYLEIGH HENDLEY, 5th February 2015
Was never diagnosed with HG but I think I had it (self diagnosis is terrible I know, but when I told my GP I couldn't drink she told me to try harder, still upset about that after 2 years.)
I still can't drink water. Water would make me vomit instantly - plain, sparkling, ice cubes, mineral, tiniest drop and I'd be sick.
Similar with apple juice, except that the occasional mouthful of that was all that I could keep down, but the association. And chicken stew.
I shouldn't really think or talk about it because that makes me feel sick, anxious and faint. Thinking of ever being pregnant again makes me feel the same as if it was HG I'd probably go through it all again.
Caroline, 18th February 2015
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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.
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Comments
Such an important issue, and a major taboo. Thank you for helping address this!
Caroline De Bie, 24th February 2015