I don’t currently have OHSS. But on my first IVF cycle I did. At the time I was new to IVF and scared and in horrific pain, and there was a real dearth of information out there about OHSS. I’ve been meaning to write about my experience and pass on tips for dealing with it in case it helps anyone who finds themselves in a similar position.
OHSS is ovarian hyper stimulation syndrome. It is highly unusual to get severe OHSS, but those undertaking IVF should be aware of the symptoms and how to manage it. I am not writing this to scare anyone, most women will feel a bit uncomfortable after egg collection but that won’t lead to OHSS. Those who have a lot of eggs / follicles are more likely to be at risk.
OHSS is thought to occur due to the additional liquid in the follicles around the eggs being released and finding it’s way into an alternative cavity – mainly the abdomen. The liquid needs to be dispersed – I think partly back into the areas where it belongs.
Roll back a few years to IVF cycle no.1. This was my one and only NHS funded cycle. I was pleasantly surprised at how quickly it proceeded once we were in the system. I was initially warned I was at potential risk of OHSS due to my polycystic ovaries and because I was petite. Following my first couple of scans which showed a large number of follicles developing the OHSS warning was repeated and I was advised to drink plenty of fluid – which I was doing already.
Turns out my ovaries were having a field day. Despite not being on a particularly high dosage of Gonal F I had over 30 follicles. I kept exercising for a while but about 7 days into stimming and whilst out running I felt so uncomfortable I knew I had to stop exercising (I didn’t want to get ovarian torsion where the ovaries can twist round and cut off their blood supply). By the day before egg collection it hurt to walk. Apparently my ovaries were the size of large oranges (usually ovaries are 3-5cm).
At egg collection they took out 33 eggs, 26 of which were mature. I felt quite uncomfortable afterwards. I was advised again to drink a lot of fluid.
I continued to feel a bit unwell whilst our embryos developed – quite hot and with intermittent sharp backache. I did get a couple of calls from the nurses to check up on me. I kept drinking a lot – mainly water. I couldn’t eat much. Meanwhile our numbers dwindled – 16 eggs fertilised and by day 5 we had 2 blastocysts. It is likely the huge numbers affected the quality but that is a blog post for another day. In the 5 days since collection I’d noticed that my stomach was swollen and hard. On the night before transfer I had really painful backache and was unable to sleep much. On the day of transfer I planned to go to work for the morning (I’d told no-one there about the IVF) but couldn’t get my skirt on properly – the only way was to pull it up under my boobs – I literally looked about 6 months pregnant. I found some loose trousers and put them on (with the buttons undone). I went into work and on the tube nearly passed out. I somehow got to my office and told my boss I wasn’t feeling good and felt faint. She took one look at me and called me a taxi which I got all the way home.
A few hours later I went for the transfer. I explained I felt unwell and they examined my hard stomach and the embryologist wanted to call off the transfer (the Dr was a bit more ambivalent). But the hospital refused to freeze our 2 embryos so I felt I had no choice but to go ahead and transfer both or I’d have ended up with nothing – no transfer and no frozen embryos.
Following transfer the hospital assigned a nurse to me who would phone every day to check as I was now considered high OHSS risk. She gave me a measuring jug. Basically they wanted to monitor my fluid output. Yes, I had to wee in a jug. I also had to write down how much I was drinking. I asked if there was anything I could drink that would help – they said just lots of water. This is actually poor advice. My research showed that what you needed was to clear the fluid from your system and plain water could just add to the problem. Electrolytes such as coconut water or sports drinks (without the sugar) were actually best. Carbohydrates and sugar should be completely avoided and I should eat protein and salt (though at this point eating was the last thing on my mind). I was also given clexane to inject to prevent blood clots.
That night I had such bad backache I woke up crying. The nurse said to keep up the fluid intake and because I was still peeing a good amount that I was doing ok. But if I stopped being able to pee I had to go straight in. The following night I was screaming with the pain so my husband phoned A&E at the hospital but they said to wait until the IVF clinic opened up as they were best able to deal with me. By the morning I was vomiting but as I hadn’t eaten much it was pretty dry heaving. We went straight to the clinic as soon as it was open. I must’ve looked a right sight – the only thing I could fit in was an old tracksuit, I was white as a sheet and I was unable to stand up properly. My husband literally lost his shit with the receptionist, poor woman, shouting that they do something. The waiting room was full of couples waiting for their IVF appointments and I must’ve looked like the worst IVF advert ever. I was rushed into the IVF theatre very quickly.
Once there I begged them to do something. My Dr wasn’t particularly helpful. She said they could put a drain in my side but it wouldn’t cure the OHSS just help manage it a bit. I had done some research on the drain and begged them to do it. They gave me a local anaesthetic and stuck a scalpel in the right side of my stomach and threaded a drain into it. It was painful but I didn’t care. Right away they opened the valve on the drain which led into a bag and a watery bloody liquid started to drain in. They also put me on a drip to replace fluid. I had to be monitored for a few hours, during which point one of the nurses came over and gave me a hug and said I was going to feel so much better now. She was actually right – as the fluid poured into the bag the incredible pain in my back dwindled. I wish the Dr had had the guts to say that I’d feel better if I had the drain, it’s really all I needed to hear. After they had drained out 2 litres of fluid the valve was closed, they did some blood tests and gave me some strong painkillers (which were apparently ok to take during pregnancy – though by this point I really wasn’t considering the possibility of a successful transfer much). I discharged myself because I was so pissed off with the hospital and because they said I could go home if I wanted. I had to drain off a further litre of fluid later that night. It was very difficult to walk with the drain as small movements made the drain move around and that was painful. I also had to strap the bag for the drain onto my leg but they couldn’t find a strap small enough so although it was supposed to go under my clothes the nurse had to put it outside. I also had to wear compression socks as I was at risk of blood clots.
At home I continued to drink coconut water and sports electrolyte drinks (as I did a lot of running I already had a supply of tablets that could be dissolved in water), and ate small amounts of egg with salt. The drain helped so much. The hospital phoned me every day to check progress, after 2 days I got a slightly panicked call from them. Apparently they’d only just checked my blood results which showed dehydration severe enough to require hospitalisation and I needed to go back to the hospital straight away. Turns out that I was actually hydrated ok by then but should never have been discharged the first day and instead should’ve stayed in hospital overnight.
About a day after that I woke with a really swollen right leg (the same side the drain was in) so had to go back to the hospital to get checked out for blood clots. Luckily I didn’t have any. The swelling was just the liquid collecting in one side of my body – assisted by the fact I could only sleep in a certain position.
Finally 5 days after I had been given the drain it was removed. My stomach was no longer swollen rock hard and my back was no longer in agony. I continued to eat mainly protein and drink electrolytes for a few more days. I was back at work about 12 days after my transfer.
Whilst I had a positive pregnancy test it turned out to be a chemical pregnancy – one of many false starts under IVF.
So in summary in my experience OHSS manifests itself through a swollen hard belly and very severe backache. If you start vomiting you must attend hospital immediately, likewise if you are unable to pass urine. To manage OHSS drinking electrolytes really helps, as does avoiding carbs and sugar, eating protein is also a good idea. I found the drain gave me almost immediate relief – but this will only be offered in severe cases. It is quite uncomfortable (I couldn’t leave the house with it in apart from to go to hospital) but worth it.
I hope no one reading this has the same experience as me, but if you are then believe me it will get better. The best thing is to be informed and get regular monitoring.
I changed clinics for my next cycle as I had only one NHS cycle paid for. My new clinic were very on top of the OHSS risks and put me on a different protocol – a bit like a mild cycle. I didn’t get OHSS again.
OHSS Risk Factors:
- Under 35 (I was 36)
- polycystic ovaries
- producing lots of follicles
- high estradiol levels (due to stimulation drugs)
- HCG trigger
- Swollen hard belly
- Abdominal discomfort / pain
- Weight gain
- Severe backache
- Nausea turning to vomiting
- Frequent peeing
- Hard to stand up straight
- Feeling dizzy / faint
- Difficulty breathing (if this occurs you must go to A&E immediately)
- Drink plenty of Electrolytes (sugar free sports drinks or coconut water)
- Plenty of sodium (as part of electrolytes or on food)
- Cut out carbs and sugar
- Eat protein
- Drain / drip (in severe cases only)
- Compression socks – to prevent possible blood clots (you may also be given clexane if you’re not already taking it).
- Delay embryo transfer – if there is the option to freeze your embryos this is advised. Getting pregnant can actually make the OHSS worse