When OHSS strikes…

I wasn’t going to follow on from my last post IVF Cycle 1…don’t cycle & move house at the same time! quite so quickly, but here I find myself wanting to pen the next instalment of our journey.

If you are reading this post because you have stumbled across it desperately searching for information on Ovarian Hyperstimulation Syndrome (OHSS) then I’m sorry that you find yourself facing this experience.  I am not a Doctor so the information in the rest of this post is purely from my personal experience.  One thing I have since discovered through my counselling sessions is that this experience has made me struggle with facing further treatment and I’m not really surprised given what was to come next.

I was admitted to hospital on a cold January Friday evening.  My stomach was swelling, I looked 6 months pregnant (an irony that wasn’t lost on me) and I could barely move.  The consultant from the IVF unit found her way over to the ward that I had been admitted to and she examined me, ordered a drip to be started & tried to explain what was happening to me.

She explained that the follicles on my ovaries had been emptied at egg collection and the hormone levels in my system meant that the empty follicles were filling up with any fluid that they could take in and they were then releasing the fluid into my body, hence the large amounts of fluid that they had seen on my scan.  She said they didn’t really know why it happened, for some people it just did.  This was starting to sound pretty serious.  We started to ask questions:

  • Was there something they could give me to stop it happening, or to slow it down?   ‘No’.
  • How long would it last? ‘We don’t know, it will just stop on its own when the process runs out of steam’.   
  • Why was I being sick? ‘The fluid could be pressing on my stomach’
  • How long would I be in hospital? ‘We don’t know, we will need to see how you go over the next few days’
  • Will I need to be drained? ‘Hopefully not but we will see how you go’
  • Would there be any long term damage? ‘No, when it stops, it reverses itself and you will be fine’

The clinic I am with now quotes the following statistics:

1 to 2% of patients will experience severe forms of OHSS, with 1 in 1000 cycles the patient needs hospitalisation. 

So, its pretty rare to end up in hospital then, but there I was in a hospital bed on our 5th wedding anniversary.  There are two points that OHSS can occur in an IVF cycle.  Early onset and late onset.  I had early onset which occurs any time from egg collection to the point of a confirmed pregnancy.  Late onset OHSS occurs once a pregnancy happens and the hormone levels rise, causing the ovaries to leak fluid.  I hadn’t had an embryo transfer so they hoped mine would be relatively short lived and I would recover quickly.  Yey for me, that was positive I suppose?  There are 3 levels of OHSS, mild, moderate & severe depending on symptoms.  I had what was classed as moderate to severe, whatever that actually meant.

The reality of OHSS for me, at the time, felt pretty horrendous.  There was nothing any of us could do other than watch me go through it and come out the other side once it decided it had run out of steam as the hormone levels dropped.  By my next period it would be gone…that was by my records at least a few weeks away.  And so, my ovaries just kept leaking fluid.  I could feel them, for the first time in my life I knew the exact location of my ovaries because the skin close to them felt different to touch, sensitive.  My ovaries were now huge & probably much bigger than they had been during stimulation.  They had to monitor my fluid input and output to see how much fluid I was retaining, so yes that meant I had to measure my pee.  I couldn’t drink because everything made me sick.  Oddly one of the key things with OHSS is to keep fluid going in in the hope that it comes out & that your body doesn’t stop working.

After one uncomfortable night on the ward,  I was woken up early to move beds.  Were they kidding?  Luckily I had no belongings with me so I shuffled to another bed in a different ward, with my drip attached .  It was about 100 yards but it took me about 15 minutes to walk.

I couldn’t get comfortable, I couldn’t sit up, I couldn’t lie down, my skin by this point was tight because of the swelling.  It wasn’t stretching with the fluid, it was tight.  I had to have blood tests throughout each day to see what my system was doing and to check my kidneys were working, or at least that was how it was explained to me.  So a belly full of fluid and they couldn’t find veins to take blood from.  This was just getting better and better.  That weekend I was scared.  Scared about what was going to happen to me, would I ever get better?  I stopped peeing, this was bad, really bad.  There was no fluid coming out but with a drip there was plenty going in.  That meant one thing to me, my belly was getting bigger.  They made the decision to fit a catheter.  OMG the pain as they fitted it was horrific, I came out of the room and stumbled back to bed with C, my mum and dad waiting.  I looked a mess and I felt like a complete wreck.  They all just stared at me, no idea what to say, I think I cried.

C and my parents took it in turns to visit me, I was after all some 35 miles away from home.  C was struggling too, he couldn’t do anything and he got upset as did I every time he left me.  On the Saturday evening he left and I sobbed and sobbed.  How did I end up here?  Why me?  I was full of self pity.  It was 2am, I couldn’t get comfy and I couldn’t sleep.  I reluctantly pressed the buzzer.  A lovely nurse came to see me, she held my hand and told me that I would be ok.  I cried some more.  She set the bed up for me in the most comfortable position she could and then she did the kindest thing she could have at that point.  She hooked me up to liquid paracetamol.  I could feel it running through my veins and as soon as it hit my system I was asleep.  I woke up about 4 hours later not really knowing what was happening and then it hit me again.  I was in hospital, unable to move, a tube of fluid going in and a tube coming out the other end to collect anything in my bladder.  The measurements were taken throughout the day, the size of my abdomen charted, my weight taken, the fluid input and output measured.  Bloods taken a few times a day, with no veins to be seen it was getting more and more painful each time they tried.  It was clearly not improving, if anything it was getting worse as my belly grew some more.  I couldn’t eat even with the anti sickness drugs and the blood thinner injection each night was bruising me and stung like hell.

Sunday was here, C came to visit me in the evening.  I could barely move but was told to try to move around to avoid DVT.  Oh yet another possible issue.  Sunday evening was when it hit me, I cried, I couldn’t breathe.  I actually couldn’t breathe.  I couldn’t draw breath.  I felt like I was suffocating.  Chris pressed the buzzer, me in the mid flow of trying to catch my breath.  No one came.  He pressed again, again no-one came.  He went to fetch someone.  The others in the ward were watching me, I just wanted to hide but I couldn’t, I was on show for all to see.  A nurse came, closed the curtains, took my ‘vitals’ and said I was fine, just having a panic attack.  Excellent…so I wasn’t suffocating from fluid but I was panicking.  It took me a while to calm down but I still couldn’t breathe properly.  The nurse left, C left as visiting drew to a close.  Another night on my own, the darkness and sadness descended again.  The tears flowed some more.

Monday morning and the ward was being prepared for the patients they were expecting.  Time for another bed move.  By this point I had belongings, I was told to pack up quickly and move.  The nurse got hacked off with me but I physically couldn’t move.  It wasn’t even 7am and I was being moved.  Again I dragged myself, my drip and my pee bag down the corridor and onto the day ward.  A few hours later a consultant from the IVF unit came to see me…with 5 students!  She asked how I was feeling, pretty rubbish actually.  I now also had a urinary infection which was being treated with anti biotics.  This was just getting better.  She asked if it was ok for the students to observe, of course I said, they need to see this!  She measured me, looked at my notes, weighed me and said that it hadn’t reversed itself yet and they would continue to monitor in case they needed to drain me.  She explained to the students what I had, how it happened & how I would recover from it.  I didn’t speak, I just sat silently & listened.  She asked for the drip to be removed & they duly left.  About 2 hours later another consultant from the IVF clinic came to see me.  She asked where the drip was, I said it was removed a few hours ago, she shouted a nurse and told her to hook me up to a drip and quickly.  Whatever, I was done with it.  I was exhausted.  I just wanted to sleep, but I couldn’t because of my ever growing belly.

As it was a day ward it filled up during the day and then emptied by 6pm, where I would then spend the rest of the evening on my own once C had left.  A laptop and a stack of DVD’s got me through the evening.  The silence was deafening.  One evening I had a visit from a lovely Doctor.  He was sent to try and get blood out of me because the nurses had failed.  He managed to draw what he needed to and asked what I was watching.  ‘Two Weeks Notice’ I replied.  He said he loved Sandra Bullock and would I mind if he watched some of it with me!  My faith in humanity was restored.  He sat with me, in the silence as we watched some of the film.  About half an hour later he said his goodbyes and wished me well.  As he walked away, I smiled.  It was going to be ok, I was going to be ok.  There were people that genuinely cared.

They had put me in a bed next to the window because I was due to be staying for a while.  I soon clocked that I could see the building where our embryos were being frozen.  This raised an unexpected emotion in me.  I wanted them back, I wanted to protect them & I wanted to tell them that I loved them all, all 8 to 10 cells of them and I was going to come back for them.  It was the strangest thing I had felt on my journey to date.  Our future children were over the road and I couldn’t do anything other than stare.  I had nothing to show for our treatment, it had gone wrong & it was my stupid bodies fault because it had gone into overdrive.  I was never doing this again.

The minutes turned to hours, more blood tests, more measuring…still it wasn’t going down.  The food was the pits.  The anti sick drugs started to work and I could finally eat.  C brought food in for me because the hospital food was quite frankly awful.  Monday & Tuesday saw no improvement, Wednesday came and it wasn’t getting any better.  Wednesday afternoon came, I was sat on the bed chatting to my mum and all of a sudden there was a gush of fluid into my pee bag.  We both noticed it…it happened again.  And then the start of the end began.  The pee just kept coming and coming.  It was like someone had turned on a tap.  I cannot describe how happy I was to see pee going into a bag!  The nurse came to see me & agreed that it looked like it was finally starting to reverse.  YEY for me!  I was going to get out of the hospital, get back to normal and get my embryos back!

I was monitored closely over the next 24 hours.  The drip was removed and I had to drink and record how much I was drinking.  The sickness started to subside.  My belly was starting to slowly reduce in size.  Thursday came. The consultant from the IVF clinic came and said I could go home that evening.  I was getting out…!  Problem, I still couldn’t walk well, my legs were the size of tree trunks, all of the fluid was heading south.  Every part of me from the belly down was still swollen.  They removed the catheter, I wasn’t sorry to see that go.  I then needed to pee what felt like every 2 minutes, the fluid continued to leave my system.  How was I going to manage an hour in the car home?  I had to wear my mums clothes because none of mine fitted, that included her rather large pants & jogging bottoms.  I didn’t look great but I didn’t care.  Thursday evening came, I got the official discharge papers and we could go.  I stood in the empty ward as C gathered up my things and I stared out of the window towards the building where our embryos were in the deep freezer.  I was leaving them, it sounds completely ridiculous now but I said goodbye to them.  I waddled out of the ward with tears in my eyes.  I just wanted to get home and wanted this to be over so that I could get my embryos back.

It would take a further 6 weeks off work for me to be fully recovered.  I say fully recovered in the physical sense.  I don’t think I have ever fully recovered from the emotional impact of what happened to me.  It filled me with fear of IVF & one thing was certain, I was never doing it again.

I will leave it there for now but I will return with our journey into frozen embryos replacements some time soon.

I hope in sharing this part of my story I can give others comfort that none of us are alone in this journey.  OHSS is awful but it does get better & you can move forward from it.  I struggled to find people who had been through it, I couldn’t find anything that said this is awful but it does get better.  I can assure you that it is awful, but yes it does get better.  I would also advise you to talk about it.  It was 6 years after my first experience before I talked about it with a counsellor.  I hadn’t realised the impact that it had on me and how it had affected my relationship with IVF.  Please don’t make the mistake I did and try to bury it, please find someone to share your experience with.  I can guarantee that it helps.

You are not alone

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26 thoughts on “When OHSS strikes…

  1. I’m so sorry that you had to go through OHSS – and a very severe case of it. I’ve had it three times. The first time was the worst though I was never hospitalized – thank goodness! I was wearing maternity pants and sleeping in a recliner. My clinic gave me no advice or directions about how to deal with this – I had to rely on the wisdom of the Internet. When I went in for my transfer, they canceled it and realized that it was pretty severe – I think they thought I was over exaggerating how bad it was.

    This last time at a new clinic, I didn’t have any hcg and did a Lupron trigger to avoid OHSS. Didn’t work though I only gained about 8lbs of water so while still uncomfortable, not as bad as the other two times. It feels so good when you start to deflate though you are peeing like you said every two minutes. Emotionally, OHSS is hard. Everyone talks about how they go to work the day after their egg retrieval. Not here. After this last round, I said we are done. I cannot physically or mentally do OHSS again. I think if I didn’t develop OHSS, I’d be more inclined to do more IVF.

    Liked by 1 person

    • So sorry you have been through it too. My last cycle we did mild IVF so only got 6 eggs but no OHSS! Our new clinic want to do the different trigger with a freeze all but I’m petrified that I will get it again. It’s making us think twice about doing it more. It’s so hard when you get it and you can’t do anything but sit it out and hope it goes quickly. Complete nightmare xx

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  2. oh wow, that sounded horrific. I’m glad there were a few nice doctors and nurses though, that makes such a difference, doesn’t it? Such a pain that they kept making you change rooms! I can imagine it must have been hard looking out the window at the building where your embryos were.

    Liked by 1 person

  3. So sorry to hear that you had to go through this (twice!) it sounds very traumatic and I can understand why you have been put off IVF. I think you are an incredibly strong person to be writing it all down and I know that it will help a lot of people. My 2nd cycle got cancelled before egg collection for fear of OHSS, I am lucky they didn’t go through with it! Since then I’m on a really low dose and I demand they check my bloods with every scan. Sending you lots of love and positive vibes for the future xxx

    Liked by 1 person

      • I completely understand why you feel this way and think it’s important that you have highlighted this issue; since my abandoned cycle I am a lot more assertive in our meetings as I don’t want it to happen again, you don’t think you would need to be assertive to the professionals but I guess they are only human and when I get them to double/triple check my bloods it makes me less stressed about process xx

        Liked by 1 person

      • They seem to think I’m ridiculous for wanting mild ivf or extra monitoring, yes I have lots of follicles but I just want to scream “I don’t want OHSS again…what don’t you understand”. It’s so frustrating because it seems like they just want to pump you full of drugs even if it’s never given a good outcome. So glad u push for answers, it’s the only way!

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  4. Danielle says:

    *barges in*
    I’ve heard that especially with mild cases, the numbers are way underreported. I think I saw once that about a 1/3 of IVF and egg donors experience at least a mild form.

    https://www.hindawi.com/journals/cricc/2012/189705/

    What you went through is horrific. I started panicking just reading it!! It’s inexcusable for treatment teams to not go over this possibility in detail and even worse if they don’t take it seriously as I’ve heard happen.

    Wonderful that you relived it to help others, however.

    Liked by 1 person

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