OHSS: “I felt like I was suffocating”

The Untold Stories of IVF

OHSS: “I felt like I was suffocating”

August 19, 2017 Firsthand Experience 12

My name is Kathryn. I once thought IVF = baby. How wrong were we. Seven years since our first IVF (we’ve had eight cycles) and it still hasn’t worked. If I had read about those that it didn’t work for maybe I would have been a bit more realistic. I am now in my late thirties and I live in Staffordshire.

A chapter from my story: I was admitted to hospital on a cold January Friday evening during my first IVF.  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 where I had been admitted and examined me. She ordered a drip to be started and tried to explain what was happening to me.

The 33 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 asked 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’

There are three levels of Ovarian Hyperstimulation Syndrome (OHSS): mild, moderate & severe depending on symptoms.  I had what was classed as moderate to severe, whatever that actually meant. The clinic I am now with quotes the following statistics: 1 to 2% of patients will experience severe forms of OHSS, with 1 in 1000 cycles the patient needs hospitalisation.

But there I was in a hospital bed.  The reality of OHSS for me felt pretty horrendous. My ovaries were now huge and probably much bigger than they had been during stimulation. 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.  Oddly one of the key things with OHSS is to keep fluid going in in the hope that it comes out and that your body doesn’t stop working.

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After one uncomfortable night, I was woken up early to move beds.  I shuffled to another bed in a different ward, with my drip attached.  It was about 100 yards but it took me 15 minutes to walk.

I couldn’t get comfortable, I couldn’t sit up. I couldn’t lie down. My skin was tight because of the swelling.  I needed blood tests throughout the 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.  They couldn’t find veins to take blood from.  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.

My husband struggled, too. He couldn’t do anything and got as upset as did I every time he left me.  In the evening after he left I sobbed and sobbed.  How did I end up here?

I woke up not really knowing what was happening and then it hit me.  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.  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.  I was clearly not improving. If anything it was getting worse as my belly grew.  I couldn’t eat and the blood thinner injection each night was bruising me and stung like hell.

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I could barely move but was told to try to move around to avoid DVT (deep vein thrombosis). Sunday evening I couldn’t breathe.  I couldn’t draw breath.  I felt like I was suffocating.  A nurse took my vitals and said I was fine, just having a panic attack.  It took me a while to calm down but I still couldn’t breathe properly. Another night on my own, the darkness and sadness descended again.  The tears flowed some more.

Monday a consultant from the IVF unit came…with 5 students.  She asked how I was feeling, pretty rubbish actually.  I now also had a urinary infection being treated with antibiotics. 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 and how I would recover from it.  I didn’t speak. I just sat silently and listened.

They put me in a bed next to the window because I was due to stay for a while.  I soon clocked I could see the building where our embryos were being frozen.  This raised an unexpected emotion.  I wanted them back, I wanted to protect them and 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.  I was never doing this again.

Minutes turned to hours, more blood tests, more measuring…still it wasn’t going down.

Monday and Tuesday saw no improvement. Wednesday afternoon came and all of a sudden there was a gush of fluid into my pee bag.  And then the start of the end began.  The pee just kept coming and coming.  It was like someone had turned on a tap. The nurse came and agreed it looked like it was finally starting to reverse.

I was monitored closely over the next 24 hours.  The drip was removed.  The sickness started to subside.  My belly slowly reduced in size.  Thursday the consultant from the IVF clinic 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 the fluid was heading south.  Every part of me from the belly down was still swollen.  They removed the catheter. I then needed to pee what felt like every two minutes.  How was I going to manage an hour in the car?  Thursday evening I got the official discharge papers.  I stood in the empty ward and stared out 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 I could get my embryos back.

It would take a further six weeks off work for me to fully recover.  I say fully recover 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 and one thing was certain, I was never doing it again.

I hope in sharing this part of my story I can give others comfort that none of us are alone in this journey.  I would also advise you to talk about it.  It was 6 years after my first experience before I talked about it with a counselor.  I hadn’t realised the impact it had on me.  Please don’t make the mistake I did and try to bury it, please find someone to share your experience with.  I can guarantee it helps.

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Editor’s Note: The UK reports an increase in OHSS due to IVF and a published paper reported, “The complications of severe OHSS include renal failure, hypovolemic shock, venous thromboembolism, respiratory distress syndrome, and even death. A particularly severe feature of OHSS is thromboembolism, for which a prevalence of 0.78%, has been reported and which accounts for most deaths associated with the syndrome.”

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12 Responses

  1. Caroline Allred says:

    This will be so useful for other couples going through this heartbreak . Thank you!

  2. […] suffering a mild to moderate case of ovarian hyper stimulation syndrome.  Even in its mild form, OHSS is a miserable and serious condition.  BTW: I had been assured prior women of advanced maternal […]

  3. Tess Goldman says:

    Hi Kathyrn,

    I know this post was written over a year ago but I felt compelled to write a little of my own story with ovarian hyper stimulation.
    I still get angry at how flippant my obstetrician was about it all.
    I was 30 and was lucky to have had 26 eggs removed and 13 embryos fertilised.
    Remember feeling extremely nauseated , extremely bloated, throwing up everything I tried to keep down soon after embryo transfer ( I had 2 implanted). The days just got worse , sitting outside in the fresh air crying and feeling so so sick and uncomfortable , hungry but unable to keep anything down. In bed I couldn’t get comfortable lying down just put pressure on my diaphragm , standing could feel the whole weight of my exploading abdomen , feet and hands swollen.
    Then I just couldn’t take a deep breath in , I couldn’t breath properly I felt like something terrible was wrong I felt like I was going to die. Rang obstrician she said get straight to hospital.
    There they examined me, my oxygen level was very low, my blood was thickening, there was a build up of fluid in my diaphragm . Was told what it was . Ovarian Hyperstimulation.
    She said, oh good news it probably is so bad because you are probably pregnant.
    Yes, I was lucky but I just wanted to feel better. was told this was probably going to last for quite awhile.
    It lasted about 6 weeks maybe more .
    I just wish women were told more about this possible complication .
    I was given the pamphlets but 1% didn’t really panic me. I was part of the 1%.
    I could have died from a blood clot . It still scares me 15 years later ….

    • Brandilyn says:

      It fills me with emotion to read stories of severe OHSS as I was one of them too. Your stories are brilliantly written and the capture the fear and loneliness in the hospital wards when you watch fluid go in and nothing come out. I hurt with you as I waddled for weeks to move between hospital and clinic waiting for the insane swelling to calm. I lived for morphine to survive the days of gritting my teeth while they tried to find a vein and the discomfort of trying to find an acceptable position to pass out from the gravol.

      I’m sorry for us and thank you for sharing. I sought out stories like this to know I wasn’t alone, that there was an end of the tunnel, and that the pain and fear I experienced were valid and legitimate. I am still recovering, but the light at the end of the tunnel is in sight and I’m going to need some way to deal with the ptsd that came from this. Thank you Kathryn and thank you Tess.

      • mo begum says:

        Hi, I am middle of this process at present, have severe OHSS, was in hospital for 5days then sent home due to the crazy covid situation.

        I’m on week 3 I think, apparently I have peaked though it doesn’t feel like it on days like today.

        Good to read stories of people in similar positions. Was starting to wonder why it was taking so long to recover.

        • Jackie says:

          How are you doing now ? I was in hospital for 2 weeks 😔 im still suffering from ohss, i dont know when its go away

    • Maria says:

      Hi Tess, I’m going through a moderate ohss apparently but very very painful and bloated, feel like my belly is gonna explode soon. They advised to take paracetamol, don’t feel like that helps too much.
      You’ve mentioned that it last 6 weeks or so, but were all these weeks same painful or will it get better later on? I was confirmed that I’m pregnant too and that’s why the symptoms are so accentuated, so guessing for will last long too and just want to know if it gets better in terms of pain and bloated belly or it’s same intense.
      The problem is that yesterday I’ve noticed a new symptom which I haven’t heard of so far so not sure if it’s because of OHSS or current medication (cyclogest). My labials got swollen and irritated, they’re huge, I got so scared last night, did this happen to any of you??? I’m really worried to be honest! I went to emergencies again in the morning and the doctor said that apparently it has nothing to with the OHSS as the swelling is on the exterior only, everything inside looks ok, but I don’t know what to believe, I’m really scared. Doctor said it’s an allergy to a product or something, but told him I didn’t change anything in my hygiene lately, so really don’t get it. They promised to call me back today to provide me 1 creme and some tablets to improve that, however didn’t receive any call so far… I can’t wait to see if any good!

      Please let me know if any of you got this issue? I’m really worried even if the doctor said it’s just an allergy.

      Thanks all for sharing your story, this is really helpful!

  4. Jackie says:

    I just discharged from hospital, I stayed in the hospital for 12 days
    I rushed in the hospital on Sunday night, after ultrasound, x-ray blood test doctors design to put a drained on me, they drained 2l. Of fluids everyday for 5 days, they leave the drain on for another 2 days incase fluids build up and i need to drain more, ….
    They took the drain out, fluids leak out from the hole make my bed all wet, i was so scared 😔
    Then i started to go pee again, little by little
    … they let me go home and rest

    Its been 1 week at home already but i still in pain, i still scared, I couldn’t sleep at night, i still walk with my. Back bend. I couldn’t walk straigh like normal, my belly still big,
    when night come I started to think negative and the time i was in hospital, i still scared im going to die 😔

  5. EK says:

    I am reading this and crying. We had 1 abandoned IVF cycle as no eggs were collected and just now was the second one. I think I am having OHSS, however I do not know how severe it is. My ovaries are huge in size with bloated stomach and free fluid on the left side. Its hard to walk and I feel thirsty all the time despite drinking a lot. I need to concentrate to pee and I feel that less urine is coming out because I still have a full bladder feeling. I cant find the position to sleep and it hurts more the I seat. I have cramps, headaches and nausea. And this is definately the last time we are doing IVF.

  6. Megan Przybylski says:

    I wish I could have found these stories when I was going through this last year. OHSS was never on our radar (mine or the doctors) as I was going through strictly monitored IUI (Intro Uterine Insemination). For those that aren’t familiar, instead of taking meds to stimulate the ovaries to produce as many follicles as possible, my meds were tweaked to produce a select few (1- 4 at most). This is because the doctor introduces sperm into the uterus at a very specific time in your cycle. With everything being done to get “a” follicle and not too many, OHSS didn’t seem to be something to worry about. Not only was that wrong, but the doctors at my clinic were baffled by the severity to which it progressed. I was in the hospital for a 2 week period towards the beginning, and also back in at least 4 times during the 4-5 months after my IUI procedure. The extra “complication” (but also major success) was that I was pregnant. Of course this was amazing, but presented issues as it kept my OHSS from resolving, and many times through those 4-5 months, actually worsening. Let alone the fear and guilt around having no choice but to be on serious pain killers My weight was unstable at the time, so it’s unclear how much I gained, but comparing my stomach while having OHSS, to later in my pregnancy, I looked around 7-8 months pregnant. I retained a ton of fluid and had to have it drained at one point (that was fun). Maybe TMI, but my stomach was so unnaturally hard (I was told your body is built to mold to a pregnancy…so OHSS swelling was much much different) I could barely wipey own ass. My ovaries enlarged to 5 times their normal size (typical is 3cm and both of mine got to at least 15cm each). I was in extreme pain, could barely walk, was throwing up, and to add to it, scared for my unborn baby. I ended up being out of work (combination of bed rest and hospitalization), for that entire 4-5 month time span it took for OHSS to eventually go away. I became physically dependent on pain meds and lost around 40 pounds due to lack of appetite (pain/discomfort and side effect of pain meds). I was extremely depressed due to doctors not being able to say when it would end, and it’s never reassuring when doctors say they don’t know what to tell me or what to expect and present the only option to improve my symptoms as aborting the pregnancy (not something I was considering as I worked so hard for this baby-my son). It was terrible going into the hospital multiple times and doctors looking at me, baffled, being straightforward that they had to call my fertility clinic because they had never seen OHSS. Not to mention the guilt of having no choice but to have family take care of me and having to rely on everyone for everything, due to my condition. To top it off, when it was discovered I was pregnant, my fertility treatment told hospital ED doctors that I was no longer in their care (unbelievable). So they were worthless and my doctor’s were clueless…not what you want when you are pregnant, in severe pain, and have nowhere to go for answers It’s funny how so many women dread giving birth…but the positive spin to this OHSS mess, was that I knew it would be a breeze compared to this traumatizing experience.
    I still feel emotionally impacted by the entire ordeal, but consider myself lucky in one big way… I got my little boy out of it (born 12/17/19).
    Unfortunately not only was it difficult at the time this was all going on, due to lack of info or knowing anyone elses experience, but now my husband and I are worried that if we want more kids, it may not be an option (biological kids obviously). It’s amazing that there is so little information and I really feel for those that go through such a mind-fuck of a situation.
    It helps writing this, but it would have been so much more therapeutic if I found this back when I was experiencing this, and really needing the support, and when it was fresh enough to probably add more detail. Thank God for our brain’s unique power of amnesia, when it comes to pain, so that (at least in my case) time has helped, by dulling my memory a bit when it comes to just how much pain I was in both physically and mentally.
    My heart goes out to those that have been through this, as well as those that have supported someone through this…both are something I would never wish on anyone.
    Hoping this added story will help others and eventually people going through this, can actually find useful information to help them.

  7. J. W. says:

    Thank you so much for sharing this! I felt so alone and I may still in amidst of suffering from OHSS. No one could tell me when will all these sufferings end. There are days I really feel like dying. I couldn’t walk, eat and drink much… I am also having very bad constipation… I wish I know all these before I start the ivf process. 😭

  8. Lydia S-M says:

    I’ve searched and searched forums on OHSS and hardly found anything. Usually just, it’ll go away after 7-10 days but will take longer if you get pregnant. It’s good to hear others experiences but also terrifying that this is such a long term condition. I’m in week 3 of moderate OHSS, I was hospitalised for 3 days when they pumped me with fluids through an IV overnight and then had to drain 7ltrs of fluid in a matter of a couple of hours when they realised the state of my abdomen when checking on me in the morning. It relieved the extreme pain and tension but the fluid just came back. I’m home now, finally feeling more myself but am still considerably bloated. I can only lie on my back, I can’t stand up straight, on heavy pain killers. I just hope that as I’m now able to eat and drink it will right itself, but I’m losing hope as to when that will actually be…. The clinic was so blasé about the possibility of OHSS it makes me mad. They spoke about freezing all embryos because I was at risk but then I didn’t hear anything else and my appointment for a fresh transfer was made. When questioned they didn’t seem at all concerned.

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