# Recovering after severe OHSS and cancelled 1st IVF cycle



## Aw1 (Apr 25, 2013)

Hello , I am new here so don't know exactly how this works so bear with me....

I just wondered if there was anyone in a similar situation to me.

I am29 and just had my first IVF/ICSI cycle where embryo transfer was can cancelled due to severe OHSS.

They got 25 eggs at egg retrieval for which I felt a little sore, however 2 days later the pain was excruciating- couldn't keep food/water down , fainting, put on about a stone in weight and my stomach was bloated like I was 4 months pregnant!

I eventually was admitted to hospital as I was so weak and faint and I couldn't even keep paracetamol in me, they put me on drips and anti sickness meds and lots of pain killers. There was fluid in my ovaries, kidneys, liver and stomach- luckily the water didn't go to my lungs and affect breathing. I was in hospital for 5 days.

This was the most scary thing that has ever happened to me and I was not prepared for it!

I am now almost recovered and my mind has turned back to the FET.

Anyone else been through this too?

Anna


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## liquorice comfits (Jan 3, 2013)

Hi Anna,

I have not been through this but am currently in the middle of my first IVF cycle and have been told that I am at a very high risk of developing OHSS due to Polycystic ovaries and an AMH of 90! I am 30 years of age.

It really sounds like you had an awful time. It really scares me that you had it so severely and cant believe that you werent warned about it. I had to sign a form to say I understood the risks.

Are you feeling better now? What drugs and dosage were you on? I have been on 112.5iu Gonal F since last Wednesday and my ovaries are responding a bit but not as much as they had hoped. Think I am a slow burner! I have to go back again on Monday and then they may increase my dose.

Any info or advice you have would be gratefully received and I wish you all the luck in the world with you FET.

X


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## Aw1 (Apr 25, 2013)

Thank you for your reply- lovely to hear from you!

I am keeping my fingers crossed for you that you don't get this- or at least only a mild form which is not a problem.

I was on menopur (my AMH was slightly less than they'd expected at 11.5) so they started me on 225 for the first 7 days, then after scans and blood tests showing my oestrogen levels were over 15000 they reduced to 150 on the 8th day then after the 10th day scan they told me not to do any the night before the trigger. 

Have they mentioned caborgeline (not sure how its spelt) to you? It's a drug you can take which halves the risk of getting OHSS- this obviously didn't work for me but it is usually meant to be really good.

I think I was just really unlucky with the OHSS, yes I am better now thanks  I can feel I will be getting my period in a day or so so I have to go in for a scan to see what condition my ovaries are now in before they decide how long to wait before they do the FET.

I would just make sure you drink plenty of liquids and try to relax- do you have a possible day for egg retrieval ?

Like I said lovely to hear from you and am keeping everything crossed for you and that your body starts reacting more to the meds too. Good luck !

Xx


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## staceyemma (Jul 30, 2011)

I am still recovering from severe ohss

I went ahead and had transfer and have never ever been so ill.
I too had  cabergoline before  which didn't do anything for me.


I was in hospital for ten days and they drained over 13 litres from my tummy!
The pain was awful.

I was on drips etc couldn't walk couldn't breathe it was awful.
After collecting 30 eggs I should have had a frozen transfer really.

Xxx


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## Aw1 (Apr 25, 2013)

Hi Stacey- sorry to hear you've been poorly with OHSS too- I wouldn't wish it on anyone - sounds like it was even worse with you- I was only in hospital 5 days and at the last minute they decided not to drain and the day after it started going down on its own. I too was on drips, protein, anti sickness and blood thinning jabs- definitely the worst pain in my life. 

Did yours get worse still after embryo transfer? Did they advise you to go ahead with it? And you are pregnant now?

I am also at the Lister. 

Glad I have the 12 blastocysts in the freezer but frustrated now I'm better again that we weren't able to finish the treatment! 

Xx


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## liquorice comfits (Jan 3, 2013)

Anna -no I haven't heard of cabergoline. I will look into it. I am making sure that I have at least 2 litres of water a day, with other drinks on top of that. My provisional EC was meant to be 3rd May but that's looking unlikely at the moment. I would much rather be a slow burner and minimise the risks of getting OHSS. At least now you are better you can focus on the FET and the fact that something positive (12 blastocysts!) came out of your bad experience. Wishing you lots of sticky baby dust!

Stacey - sorry you had such a horrendous experience too. I suppose you had it badly due to the fact that you got pregnant? Is that correct? I seem to remember reading somewhere that OHSS symptoms can worsen if a pregnancy occurs. I notice that you shortly have your scan. I will keep my fingers firmly crossed for you!

R x


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## staceyemma (Jul 30, 2011)

Aw1 yes I am pregnant but very scared my time in hospital has harmed the pregnancy  
Yes it was very awful I've never felt so low in all my life!
Amazing that you have 12 blasts in the freezer!
Really I should have had a frozen transfer but I was feeling ok and went ahead with the transfer, 4 days after the transfer I started to feel really ill. I collapsed unconscious at the IVF clinic and taken off in an ambulance!
I had zimmer frame to get to the toilet! 

Liquorice yes pregnancy worsens the ohss at one point they warned me that I could end up in intensive care  
Thank god I'm feeling better now xx


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## maggie01 (Oct 23, 2012)

Hi Ladies,

Sounds like you have all had a bad time with ohss.  Much worse than my experien
I was on short protocol with gonal f/cetrotide and like you liquorice started off slowly they did not increase my dosage but let me stim a bit longer which let my follicles grow to correct size but did run the risk of ohss.

They told me before i went to ec most likely they would freeze eggs on day 1 but after ec they decided as they did not collect as many egg they would proceed with et in 5 days and let my eggs go to blast.  I ended back up back at the clinic 2 days after ec as tummy swollen and could hardly breathe.  They took bloods and i had mild ohss then and blood was at risk of clotting so had to wear.sexy white stockings and inject fragmin.  On day of et i had scan and fluid was everywhere and tummy so swollen they decided embryo transfer was not best idea as had moderate ohss and could get a lot worse.

I have been told i need to have 4 bleeds before i can have my fet.

Xx


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## Aw1 (Apr 25, 2013)

Hi girls,

Liquorice-thanks so much- keeping my fingers crossed for you too. Let me know how you get on.

Stacey- praying everything goes well for you -stay positive. How did you find the Lister clinic when it came to getting OHSS? 

Maggie- wow - 4 bleeds - that's a long time- do you know the reason for this long? I think you were sensible not to do embryo transfer as it was not with risking it turning to severe OHSS. 

Anna xx


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## staceyemma (Jul 30, 2011)

Hi Anna the lister have been fantastic all along so supportive and caring xxx
So nervous about my scan x

I should have had FET really but it's too late now


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## Aw1 (Apr 25, 2013)

Yeah I found them to be lovely too- very supportive!
My only gripe was paying twice for the OHSS screening- seemed a bit unfair!

At least your pregnant now though- nothing to say everything can't go smoothly going forward  

Xx


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## Ellie-D (Apr 14, 2013)

Hi Aw1 sorry to hear of your awful experience,I was exactly the same I was on the long protocol and on EC had over 50 follies. They collected 33 eggs of which 20 fertilised. 

The day after my EC I was unable to breath and was taken in for an emergency scan. I had fluid everywhere and looked 6 months pregnant. I was kept in hispital for over a week which was awful, like you I would wish it in nobody!! Obviously my ICSI cycle was cancelled and all 20 embies frozen at 1 cell. I then had to wait for 3 bleeds after the OHSS or 3 months (as I have erratic periods). 

At the end of feb i started on my medicated FET cycle. On 8th April 7 embies were thawed of which 6 survived  on 12th April I had one hatching blast back on board am I am 5 weeks pregnant tomorrow!! Doing the FET has given my body time to recover and the process has been so much nicer!! Just fingers crossed for lots of sticky vibes now  

Good luck to everyone on their journeys and Aw1 if you want any info or anything give me a shout!! 

X x


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## Gem7 (Feb 2, 2012)

Hi

I have not been through this my self but I too have pcos and at high risk of ohss I have noticed from all your replies that no one mentions metformin which has been prescribed to me for every treatment which is supposed to help with the ohss with women who have pcos. I am just about to start my 5th cycle. Every time I [roduce a lot of eggs due to the pcos but the metformin seems to help stop the ohss.

Just thought this might help ask your consultant about this.

Gem


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## Aw1 (Apr 25, 2013)

Hi Ellie- so sorry you went through this too- and worse by the sounds of it  but wow now you are pregnant so congratulations! Did you consider transferring 2 blasts or always just 1?

Did your clinic say you had to wait 3 bleeds before the FET ? What was their reasons- do you know? I was hoping to do it sooner than that!

One of the most awful parts of the OHSS was the swollen belly- seemed so cruel!

How did they manage your FET- did you take medication?

Hi Gem- thanks for that- I don't have pcos- I think I was just really unlucky! Hope you never get it- sounds like the metformin is working!


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## Ellie-D (Apr 14, 2013)

Hi Aw1 unfortunately last night I had a massive bleed which has carried on today absolutely gutted  so ill be on the FET route again as soon as possible. 

With the OHSS if an embryo implants and results in pregnancy it will get worse!! They said to wait for 3 months so my body was back to its normal self. I don't think you have to wait this long In between FET's just if has the OHSS. I had a medicated FET due to irregular periods. 

When would it be you would start yours?? X x


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## Aw1 (Apr 25, 2013)

Oh Ellie im so sorry to hear that  must be so disappointing  fingers crossed for next time 

I don't know when i can do the FET but I got my period today as expected so have a scan on Thursday to see what my ovaries look like so I guess we'll go from there.

Do you know whether OHSS affects implantation ? My period aren't regular (I.e not every 28!days) but usually around 30-35 days so not sure if that's classed as regular or not! 

Anna xx


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