OHSS

Hello ladies, just wondering if anyone has had any experience with OHSS they can share? I had my EC 29th August and ET 2nd September and was absolutely fine immediately after both procedures, but about a week after ET my tummy started swelling up (despite the rest and the 2-3l of water a day!) and one day I woke up with bouts of dizziness. I decided to work from home that day which was a good thing as by the evening my head was so dizzy I couldn't stand up without being violently sick. So after going to a&e and then spending 2 nights in a hospital on a drip and a catheter, I was discharged home with follow up blood tests every 2 days.

So the diagnosis is 'mild' OHSS because the ovaries were below 8cm (they did increase to 9-10cm though) - but it is now the 3rd week where I look to be 8-9 months pregnant. It's horrible! I can't move properly and my back hurts like hell... I guess the only positive side of this is that is has been aggravated by pregnancy (I'm nearly 7 weeks now). They say OHSS will not affect the baby, but I am so miserable and so immobile, it is hard to believe that....

So I am just wondering has anyone had OHSS and lived through it to tell the tale? How long did the swelling last? what was your treatment? If anyone has any experience with this I would be very grateful to hear about it! Xx

15 Replies

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  • Hi Medeine. How miserable for you. First of all your baby will be quite safe, so try not to worry on that score. Unfortunately if you are hospitalised with OHSS, you have been poorly, and it can take up to 3 months to recover. Providing you are passing urine OK you should be fine. Just try and rest when you can, and hopefully your discomfort won't last too much longer and you can get to enjoy your pregnancy. Remember too that morning sickness can kick in around now, so if that happens you will feel a bit miserable for a few weeks anyhow. Get well soon! Thinking of you. Diane

  • Thank you so much Diane for your reply! I have been obsessively tracking urine output since that was what triggered my hospitalisation - but so far, fingers crossed, it has been normal... and yes, I am starting to feel nauseated but so far it has not been too severe so just another thing to add to the discomfort :(

    Looks like if the pregnancy goes well I will look the same at the beginning and the end of it! hopefully I will have a bit of normality in the middle somewhere...Thank you again for your reply. Xx

  • Hi Medeine. Just to add that baby will be quite safe and unaffected by all of this. Looks like all will soon settle down. Thinking of you as always. Diane

  • Hi Medeine,

    I can sympathise. I had mild OHSS immediately after EC, which developed into moderate-severe (with a BFP). I was admitted to hospital about 7-days post transfer, and because my bloods were deranged I ended up in for 8 days. I was given IV fluids, human albumin, and vitamin K over about 5 days, and under observation and regular blood tests for the remainder. Fortunately I didn't end up in ITU, but I can honestly say it was one of the worst experiences I have ever had (a positive test being the only 'positive'!).

    I suppose I was pretty much back to around my normal size after about 3 weeks, although I still have some residual ascites in the abdomen, and my ovaries are still enlarged (Lt 5cm, Rt 8.5cm); so I'm still taking things easy and trying to drink plenty of water.

    I had a scan at 7 weeks which showed everything to be normal with my little 'on board' bean, so don't think there's anything to worry about re OHSS/normal early pregnancy.

    Unfortunately there is no quick fix for the swelling, just feet up and keep drinking.

    Good luck with everything

    Sarah x

  • Also...I forgot, my specialist prescribed a blood thinning drug which I have to inject every night until my 12th week :-( So I feel like a big pin-cushion!

  • Until 12th week?? and just when you thought you were done with all those injections... Funny how different doctors / hospitals have such different approaches though. I was given a few of those while in the hospital and then there was a different opinion whether I should be having them or not depending on which doctor I saw. In the end I just went home with some sexy compression socks and a bottle of morphine... :-S

  • Hi Sarah, thank you so much for getting back to me :) my god, 8 days in the hospital sounds horrendous! my OHSS developed exactly a week post transfer and a few days later I was in the hospital - spent one night in the high dependency unit hooked up on all sorts of things, catheter, monitors and also the albumin.... worst night of my life! Second night was a little better, but I was still keen to get out as soon as possible :-P

    Great news that your 7 week scan went well! I've got mine tomorrow so will ask them to measure my ovaries as well while they're at it... if they can get to any of it through the massive water balloon that is my stomach!

    Thank you again for your reply and best of luck with the rest of your pregnancy! :) Xx

  • I completely sympathise with you, I also suffered with OHSS and was hospitalised 3 times. I also had hematomas which added to the problem! At 10 weeks I had a scan and it showed my ovaries had reduced back to normal. I wasn't given a real treatment plan but I took it easy, drank plenty fluid and would advise a really good diet avoiding foods that bloat you as my digestive system really struggled after all the sickness and being bunged up is just as uncomfortable!

    Good luck, keep me updated on how you are getting on x

  • Hi Se99, thanks for sharing your experience! 3 times in the hospital sounds horrible - only once for me but after 2 nights I couldn't wait to get away! I am just so frustrated with my stomach being so massive - it's been 3.5 weeks and it has not budged for the last 3... We have our 7 week pregnancy scan at the clinic tomorrow, so I will ask if they can look at my ovaries as well. What a miserable way to start something we have been so desperate for :-S Thanks again for sharing, and I hope your post-OHSS pregnancy is going smoothly! Xx

  • Hi all

    It's been so comforting to read other OHSS stories.

    I also got late stage OHSS, admitted to hospital after the dr confirmed my positive pregnancy result at 4wks at an appointment I had to check my swelling.

    It's been a frightening experience, and as others have said, the only positive is that it's caused through the pregnancy hormones!

    I've had 5litres of fluid drained, and looked 7 months pregnant. I'm still very bloated and although the drain was taken out I am still leaking fluids so now have a little bag stuck over the wound!

    I also got blood in my urine so on antibiotics now and being monitored for clots as my pulse is very high.

    It's so difficult to remain positive, I feel like I've been through so much without having this happening! I am worried for the baby but everything I'm being told is positive, if I was not pregnant I would not have the OHSS.

    The actual drain procedure was uncomfortable but fine, and I feel so much better now if a little traumatised and exhausted after 3 days in hospital.

    I can't wait to have my belly back to normal it's hard to know what to wear. I'm in maternity trousers and look so obviously pregnant it's a bit of a taboo especially going back to work!

    How did others find their steps back to normality? When did you return to work and did you have to say anything to colleagues? How long did the symptoms last and did the swelling increase at all or just go down again?

    Thinking of you all!

  • Hi Nikki, as another sufferer of late stage OHSS, I feel your pain! And I wish I could be replying with this misery behind me, but today is exactly 6 weeks since this whole thing started. From Google I've gathered that for most women it lasts 2-3 weeks but 'can last longer' - I guess I'm in the latter category. I am now 9w4d pregnant, but like you I'm really worried about the baby and the 12 week scan can't come fast enough...

    I was in the hospital for 2 nights - one in a high dependency unit - they didn't drain me although that was on the cards if the swelling had increased rapidly.

    I was so naive in thinking that once I was out of the hospital - it will sort itself out in a few weeks. I took one week sick leave plus two weeks annual leave (which I had already booked for a holiday, but had to cancel). Unfortunatley, after the 3 weeks, nothing changed - well, perhaps the only positive change was that I think the swelling would reduce slightly during the night as I could sleep better. We have been measuring my girth in the mornings (standing and lying down) and it has slowly reduced from 95/96 cm in the mornings following my hospital stay to now approx 90cm 6 weeks later. Not that it matters that much as I'm still swollen throughout the day!

    Work has been tricky to deal with as I still look 8 months pregnant (but more barrel shaped from profile than with a pregnancy bump!). I am lucky in that I can ask to work from home and once I explained the situation to my manager she was happy for me to do that. So I worked from home for 2 weeks and this week I came in to the office 2.5 days. I was dreading having to explain myself to people (not wanting to!), but in the end I told the whole sad story to some key people in the department as well as a few colleagues that I share the office with. I am still not going to advertise my OHSS/IVF/pregnancy to everyone but I found it easier the more people I told. I kind of feel that this is difficult enough to bear without having to squirm and lie!

    So again, I'm sorry that I am not replying with the OHSS behind me, but I just want you to know that you are indeed not alone! I really hope the swelling goes away for you soon and the rest of the pregancy is trouble free. Do keep in touch if you need to vent to someone who is going through the same :)

    PS what have they said to you in terms of recovery? I've only been told to rest and drink water (clinic said 2-3L - doctors at the hospital said to thist, I'm going with the doctors).....

    PPS Also do you have any other symptoms? I've been getting weird temperature spikes during late afternoons/evenings for about 2 weeks now - I'm usually approx 37C in the morning, but it goes up to 37.7-37.8C by 5pm-7pm.... no one can tell me why, although reading some obscure academic articles, that sometimes happens in OHSS. weird.

  • Thanks Mediene

    I read your reply and have just literally been discharged... I asked what I could do to help myself and what to look out for and they didn't say anything!

    Just to look for online forums, charities and NHS choices website. Pretty poor! I do feel like I'm being thrown out into the wild a bit as clearly it's going to take time to recover.

    My other symptoms post draining have been a spiking pulse rate, UTI infection, feeling hot and slightly nauseous. They have been concerned about the pulse particularly due to the risk of clots but can't find anything.

    The difficulty is that the IVF drugs make me feel all of these things (I'm on pessaries Cloyclogest I think) so it's hard to know how I actually feel. Plus I've never been pregnant before so even though it's only 5 weeks now it could be that.

    Encouraging to hear about your return to work: perhaps being open is best rather than worrying about people speculating, it bet that was nerve wracking though!

    I really hope that when you reach the 12 week mark things will settle?! Are you getting any other symptoms?

  • Hi Nikki, hope you are feeling more comfortable being at home rather than the hospital! Yeah, no one could give me any useful advice on what to do either or say how long this is going to take. Although all drs were very keen to stress that I should keep up the fluid intake and should not do anything strenuous including no intercourse (as if I'm in any mood in this state!). This is because there is some danger that the ovaries could twist, apparently a very painful condition that would been operating on...

    I read on some forums that increasing your intake of protein (esp albumin) and drinking electrolyte drinks helps. In principle this seems to make sense, so I ate eggs, nuts, meat and few protein bars for the first few weeks and drank coconut water and tomato juice. None of that made a difference so I just stick to a more normal diet now.

    It is hard to tell whether the symptoms are caused by OHSS or pregnancy or the pessaries or all three!. This is my first pregnancy as well so I have nothing to compare it to. I also got some nausea around 6-8 weeks and felt extremely fatigued (would be taking day snoozes which I never do!) - all that has passed now so I do worry if I shouldn't be feeling more nauseous as a sign of the pregancy going well! but then maybe my protruding abdomen is enough of a symptom for by body.

    Anyway, I'm 10 weeks today and still swollen :( But besides the weird temperature spikes, I've also developed some very unpleasant symptoms like intermittent diarrhea and quite strong pain in my rectum (as well as other parts of the stomach area). I figure some of it is due to the swelling and growing uterus pressing on some nerve somewhere, but I had enough of it so I'm seeing the GP tomorrow as apparently they need to refer me back to the hospital - I can't just call up for advice.

    I hope you managed to take plenty of time off work in terms of sick leave? I found that the first few weeks I was just like a vegtable barely able to move or think, but now, although I'm still not able to do much physical activity, I feel better coming into the office and taking my mind of the discomforts!

    Anyway, I hope you had a relaxing weekend and are getting plenty of rest! X

  • Hi there

    I thought I would drop you all a line to check how you are doing and give an update on my experience, seeing as there is zero info put there!!

    I hope by now most of you are able to put the OHSS behind you and Medeine are you close to your 12 week scan?

    After I messaged about being discharged from the hospital I was re admitted and ended up staying in for 5 days. I then got signed off work for a week. Was measuring girth every day and went from 94cm down to 86cm that week.

    Went back to work the week after, rather self conscious but in maternity clothes and huge baggy jumpers. No one mentioned anything and I continued to loose weight and width each day. I was very uncomfortable and still very out of breath. I work in London and was being offered seats on the tube every day which was an odd bonus!

    I also suffered from sudden sharp pains in my stomach, where I could hardly move it was so painful, but Luke IBS, but only after eating. I think all the swelling caused a few issues with digestion. Also hugely constipated! Any bowel movement was a relief!

    After about 10 days post discharge I went back for a follow up scan and all was good still had 4cm fluids around my stomach but clearly swelling was stable or reducing. Dr also confirmed they could see baby / egg sack.

    I then rapidly lost weight, weirdly stressful as did not feel or look pregnant! I'd say I was back to 'normal' levels of bloating (iVF style!) 14 days after leaving the hospital.

    Had 6 week scan and dr confirmed a baby heart beat, didn't tell us we would hear anything just turned on the mic and it was the most relief I've ever felt!

    Now waiting on 8 week scan after which I hope we can put the OHSS behind us and start being happy about the pregnancy

    It's been a really traumatic experience. I'm finding im very emotionally detached from being pregnant, and feel like I need a while to recover and process what on earth happened.

    I wish there were more support groups it's a very strange thing to go through.

    Anyway sorry for the long post but I hope others find this helpful, the main thing is however awful the experience is, somehow little baby does seem to get through it!

    Thinking of you all. X

  • Hi Nikki,

    thank you for posting again! There is indeed so little on OHSS or it is all the same stuff being repeated over and over, it is impossible to find someone to relate to...

    Gosh! So sorry to hear you had to go back to the hospital! Did they drain you again or was it for monitoring? I've been fortunate in managing to avoid the hospital again, although they keep having to take my blood as the liver function test seems to indicate there is still liver damage.

    Very happy to hear the swelling has resolved itself! It is such a strain on the body, which is the last thing we need when pregnant.

    I'm 13 weeks today and unfortunately still walking around with a protruding belly. It has gone down a little bit (approx 6-7 cm) since mid September, not nearly enough as I would like it to have gone down given it's been two months. I had this fear that they will struggle to find the baby at our 12 weeks (it took a bit of searching among all that water during our 7 week scan...), but it was just there as soon as the nurse put the ultrasound gadget on my tummy! it was absolutely amazing especially as we saw the baby move - wave it's arm, stretch.. It really made it real!

    I know what you mean about being emotionally detached from the pregnancy as I felt the same before the scan. the OHSS is such an ordeal to deal with plus with all the weird aches and pains and other symptoms that you just assume are due to OHSS, but the doctors can't reassure you because they don't know enough about it... But trust me,once you get to the 12 weeks and the scan where you can see the nose and the chin... it becomes much more real. My 7 week scan reassured me, but since it was just a little blip on the screen it was harder to connect to I guess....

    On the downside, the 12 week scan also revealed that my ovaries are still quite bulky (4x5cm and 7x6cm), plus there are large pools of fluid 13cm and 11 cm. I now have a scan at 16 weeks to check on the progress, which I'm looking forward to mostly so I can see the baby again :)

    But yes, I hope putting the OHSS behind us and focusing on the pregnancy will be the best way to heal from this 'experience'. I still need to lose all that fluid though (how long can it take???) - I suppose I started to learn to live with it to an extent, but it is exhausting trying to hide your tummy from people all the time! I can only hope that the fluid drains before the baby starts to move as I want to be able to experience that as soon as it happens. fingers crossed!

    Take good care of your self! X