My journey with Hyperemesis Gravidarum
I’ve decided to do a one-off blog about my journey with Hyperemesis Gravidarum. Maybe this could be deemed as pretty self-indulgent and maybe it is, but it’s been so horrendous, it’s all I can think about. That and counting down the days left until I meet my little girl (154, give or take).
I’m one of the lucky ones. I’ve joined so many UK-based forums for hyperemesis sufferers – so many women on there are vomiting up to 20+ times a day, are back and forth to hospital every few days, have a PICC line in their arms or are on a Zofran pump. I’ve also seen stories of women vomiting up to 60+ a day and taking up to a year to recover from hyperemesis even after they’ve given birth.
Yet it’s been bad enough for me, and I’ve only been hospitalised twice since New Year.
At my worst I was throwing up around 10 times a day. Not just after eating: when there was absolutely nothing in my stomach, or even when I’ve just had a sip of water. I couldn’t even get out of bed to go to the kitchen. Often, my partner would come home from work and discover that I’d been too ill and weak to even get myself a drink let alone something to eat. The kitchen is just opposite our bedroom, but hyperemesis makes you so ill, even getting out of bed is enough to bring on another vomiting fit. I just couldn’t do it.
Cartons of juice, flasks of hot water and splashing out on a good old fashioned teasmade turned out to be the solution.
I still don’t know quite when it started. After finally becoming pregnant (yippee!) in early December, I had absolutely no clue how miserable I’d be in the coming weeks and months.
At the time, I was on medication for depression and anxiety: Citalopram and Quetiapine. As I’d been on the lowest possible dose of Quetiapine for several years, I decided to just go cold turkey. Three days later when the nausea started, I assumed it was from that. Not that it was easy to deal with – I was in ‘puke purgatory’ for two weeks.
I did hours of research, reading about people trying to withdraw from Quetiapine with the side effects being intense nausea and vomiting.
So when the actual vomiting started when I was 5 weeks pregnant, I resigned myself to it being due to Quetiapine and assumed – hoped – it would stop in a few weeks.
It didn’t. It got worse. I was lucky in some ways: being a freelancer meant I didn’t have to go back and forth to the GP getting signed off work, but it did mean having to deal with one particular client I’d just started working for 3 days a week who was already giving me a hard time over my disability. Their attitude towards my worsening condition made things all the harder for me. How could I possible explain to them just how ill I was when I didn’t even know myself? I still assumed it was the effects of Quetiapine – several weeks later.
As it got nearer Christmas, when friends and family started to get into the spirit of things, talking about festive plans, meals out, trips away, I felt worse and worse. I was stressed about this new client and I couldn’t understand why even the idea of food made me retch and then end up with my head down the toilet.
I spent most of the Christmas period in bed, dragging myself every so often to the lounge so I didn’t look too antisocial – we had my partner’s parents staying with us. At that time, I was only vomiting twice a day but felt constantly nauseas and weak and I was just getting by on Phenergan which I had begged an out-of-hours GP to prescribe for me a few days before.
I have no idea how I survived our New Year Party. I felt awful that my partner did all the work for it, spending hours in the kitchen cooking, just like he had done over Christmas, while I spent the day in bed, hoping to feel better for the evening. And I did, for a bit. I survived on Phenergan that night, but the effort of actively socialising and playing host to a load of people who had no idea how ill I felt was pretty grim.
But from the next day onwards, my sickness started for real. I was sick throughout the day. I couldn’t eat, I couldn’t even take fluids. Surely this couldn’t still be Quetiapine withdrawal?
We don’t have a car so we had to order good old Addison Lee to take us to the hospital on 2nd Jan. Waiting in the A&E department for 4+ hours isn’t the best place to be when you all you want to do is lie down and die. There weren’t even any A&E beds available so we just sat on the hard, uncomfortable chairs whilst I wondered miserably why the hell I’d wanted to get pregnant in the first place.
In the end, after I was admitted to the ward, they only kept me in overnight. Diagnosed me with Hyperemesis Gravidarum (really, I have that? Isn’t that what the Duchess has?!), gave me a short line of intravenous fluids and vitamins and then deemed me fit and well to return home with some meds.
I was back within 24 hours suffering from malnutrition, high levels of ketones and dehydration. I don’t know what it is about being in hospital when you have HG, but all your symptoms just seem to disappear as soon as you’re hooked up to a drip. They even gave me the same meds they’d given me at home – which hadn’t worked – but for some reason, were working fine in hospital. I was even able to eat hospital food. Actually, I was so bored, I lived for the meal times.
When they discharged me three days later, both my arms were bruised and sore from all the drips I’d had in. One morning, they tried three different veins, each time, succeeding to put a line in, but then having to remove it again after it became apparent that my vein was ‘too tired’ and the fluid going in was really starting to hurt.
Even when I got home and vomited up my dinner (I hadn’t been sick at all in hospital), I was determined not to go back. My arms were sore, the meds weren’t helping, I’d just have to stick at it. My parents visited during the day whilst my partner was at work, clucking around me with homemade chicken soup, freshly washed bed sheets, flannels for my face. Bless them.
And I started to have good days. When it snowed last month, I managed a walk to our local park – the first time I’d been out since early December. I thought I was on the mend.
But then the bad days came back, and it became clear the meds just weren’t helping. In fact, I was vomiting the same number of times with them as without. There was one drug I wanted to try. I knew about it because women were swearing by it on the forums, although GPs weren’t always happy to prescribe it. Zofran, or Odansetron, as is its generic name. It’s the same drug given to chemotherapy patients to help with nausea and vomiting. I knew that the only way to get it was to lie. No GP readily prescribed it due to the expense and hospitals tended to give it as a last resort. But I was desperate. I needed to start working again, I needed to start eating, I needed something to make me feel more human.
During a telephone consultation with my GP (I’ve been bedbound since December, so going to an actual GP’s appointment was out of the question) I told her that Odansetron had been recommended to me by a gynaecologist at the hospital. I held my breath on the lie. There was a moment’s pause and then “and you’ve tried everything else?”. “Yes”. This was true: four different drugs hadn’t worked. “OK,” she said. “That’s fine.” I could have cried with relief. Actually, I think I did.
She warned me about the constipation risk – and believe me, it’s serious. I’d read about women who had such bad constipation from Odansetron they’d had to go into hospital for enemas.
I got by on one 8mg pill every few days. I know, that’s how I know I’m one of the lucky ones. Most sufferers with HG need to take at least 4 pills every day, let alone get by on one a week. But for me, it meant I had 1-2 OK days with 2-3 not so good days, with the 3rd and 4th day back to feeling awful again.
Yet even with this wonder drug (because it is amazing), I still felt pretty rotten most of the time. Feeling constantly nauseas 24/7 with intermittent vomiting isn’t fun for just 48 hours when you have food poisoning, but when you’ve been this ill (and worse) for 9+ weeks, bed bound, with your life on hold, you start to wonder why they hell you got pregnant in the first place.
HG usually (according to various studies and theories) starts to subside by 22 weeks. It’s not like morning sickness which goes by the 2nd trimester, it tends to hang around longer. And many women with HG have it their entire pregnancies.
As of today, I’m 18 weeks and I’m seeing an improvement in my symptoms. I’ve gone back to taking Phenergan and even managed to reduce the dose. I’ve moved from the bedroom to the lounge during the day and I’m vomiting every few days rather than several times a day. I get good days and I get bad days but *touch wood* I do think I’m on the mend. Finally. We’ll see.
Hyperemesis Gravidarum isn’t morning sickness and it’s not something that you can ‘just get on with’, nor can it be cured or dealt with by eating a ginger biscuit before getting out of bed. For anyone suffering with Hyperemesis, these suggestions and comments aren’t just insulting and irritating but pretty hurtful too, as if us HG sufferers would actually chose to take medication during pregnancy, if just a bloody biscuit would help. Come off it.
If left untreated, hyperemesis can be fatal to the mother and the baby and often women like me with HG lose quite a bit of weight. I’ve lost about a stone and a half since December.
Not taking medication just isn’t an option, nor is it advisable. Medications used for the treatment of HG are actually well evidenced with very little risk to the developing foetus. It’s actually much more dangerous not to take medication due to malnutrition and dehydration from the constant vomiting that HG causes.
For more information about hyperemesis gravidarum, its risks, complications and anything else about it, there are some really great sites and charities out there:
- The HER foundation, (Hyperemesis Education and Research)
- Pregnancy Sickness Support
- Pregnancy Sickness SOS
Thank you for reading.