# Risk of OHSS if youve had it, share your experience pls



## Rayofsunshine (Jul 28, 2013)

Morning all (im on day 11 of stimms today and day 10 yesterday, i have 24 follies)

After my scan yday morning my consultant sent me for yet another blood test to check my estradiol levels. He then sent me an email and called me pretty late last night with yesterdays result which didnt look great, he said they had gone from 5000 to 13000, which is vey high and i could be at risk of OHSS, but he said he will make me drop my dose again (from 250 gonal f to 112.5)  and i will not trigger until they r at safe levels.  

So ive gotta go in for another blood test today and drop my dose then im infor another scan and blood test tommorow! 

Feeling worried right now :-

I know if i get OHSS we will just have to deal with it but it could mean a freeze all cycle if i am poorly. Last cycle i only had 11 follies and 6 eggs collected so to go to 24 follies, i just think its too many.  

Anyhow my question to u ladies is, has anyone experienced OHSS before? Were yiur hormone levels similar to the above? I know i cant get it till after EC but what should i expect? How long could it last? 

I understand what the symptoma are and to drink lots of water/milk, eat protein ect.

Thanks 

Ray xx


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## KandK (Nov 17, 2011)

Firstly shame on your clinic!  OHSS risk is totally manageable and preventable but most clinics mis-manage it and push the woman to produce too many eggs then "coast" her in an effort to fix their mistake.  You have some options.  Don't trigger with Pregnyl or Ovitrelle/Ovidrel, you are better off with Lupron.  Also be prepared to have your embies frozen - it is safer for you than to risk a pregnancy as your OHSS will  get much worse and can be life threatening, even with the best medical care.  

My DH is an ob/gyn and we always shake our heads at clinics who overstimulate patients then coast them.  Unfortunately for you producing too many eggs (ie. over 15) is detrimental to egg quality, and coasting further reduces quality so be prepared for the possibility of less fertilization and less embies at day 5.  Your clinic needs a slap and next time (I hope there is no need for a next time for you) start you on much lower doses and then gradually increase them - not throw so much fsh at you then backpedal hoping to fix their mistake  

Yes drink lots of water and milk if you like it.  Get some GENTLE exercise to promote fluid removal.  Have plenty of rest and try not to exert yourself too much.  Sorry you are in this situation, it is total mis-management from your clinic    If you want further advice feel free to PM me.


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## duckybun (Feb 14, 2012)

Hi rayofasunshine,

I just wanted to pop on and reassure you that just because you have more then 15 follicles doesn't mean you're eggs won't be good quality... Kandk, I appreciate that your dh is an obgyn but there's no point in making people worry about their cycle outcome at this stage! I had 40 eggs collected and am pg with twins so it didn't do me any harm! I did get ohss but only late onset which means it was the embryos implanting that pushed my hormones over the edge. I was about 5 days after 5 day transfer before I got ohss. It's really not pleasant, but my clinic were great and had me in on a couple of occasions to give me drips as I couldn't keep hydrated no matter how much I drank, peaked at 5 litres!! Anyway I just wanted to reassure you that its not a disaster if you do over stimulate and its equally not a disaster if you do have to freeze all. Keep drinking plenty and keep eating protein as the extra fluids can flush your system so you need to keep the protein up.

Good luck

X
Ducky


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## Katey16 (Mar 17, 2013)

Hi,

I also had OHSS but it was mild, although I was still double upped! Mine came the day after egg collection, I had 26 eggs. I think it depends on circumstances why this happens and my levels were high as well but I have PCOS. My advice is set you alarm clock for every 4 hours at night and drink as much water/milk as possible throughout every 24 hour period, it makes a huge difference and also eat as much protein as possible. I am talking 4 litres of water and 1 of milk, it can be done! 

Also I am with ducky - granted many of my eggs were immature as they are in my cycles. But this one I got my best ever result, 10 mature and 9 fertilised and 3 made it to blast. So as far as egg quality is concerned it had no effect for me so don't panic. 

Hope that helps
X


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## moggle (Nov 28, 2013)

I also wanted to reassure that I had 19 eggs and all indications were that they were great quality (17 fertilised and 11 were good enough to freeze / implant). Obviously KandK knows what she is talking about but it doesn't necessarily apply to absolutely everyone.
In my case all the signs were there that I would be a relatively poor responder (low AMH for my age) so I was started on a high dose (but not the highest as my antral follicle count the cycle before was not terrible) and was reduced after the first week. However I didn't have to coast, I triggered exactly when originally planned (with pregnyl). They thought I had 15 follicles but there were obviously more at the end.

I got mild OHSS which showed up a couple of days after EC but it didn't affect any of my remaining treatment and also, did not come back when I got my BFP. I was told the usual advice about keeping on eating protein and drinking plenty of water.


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## Dudders (Jun 18, 2012)

Everyone is an individual!!  My first cycle they got frightened quite early with my E2 levels and dropped my stims too much really as my level stalled in the end.  That cycle peaked at about 8.5k.  My second cycle, they were a bit bolder and were confident that new research showed around 15k to be the tipping point, but would push to 20k.  That cycle I peaked at about 27k!!  I was coasted for 2 days and triggered at 16.5k.  Third cycle peaked and triggered at 17k.

Egg numbers were 9 (6 mature), 10 (9 mature) and 8 (7 mature) with 100% fertilisation on cycles one and two and 60% on cycle three.  Cycles one and three were freeze alls but not due to E2 levels as I have lining issues.  Cycle two produced two top quality blasts which both made babies.  Unfortunately one set up camp in my tube.

Not once have I had the slightest sniff of OHSS even getting pregnant with twins.

I think not knowing the individual situation you can't assume it's mismanagement as some people just have spiralling E2 levels.  Even on one of the lowest doses of stims my E2 levels hit the high thousands in just a few days - that is just the way my body works!!

Get plenty of fluids and ask for cabergolene if they haven't given it to you already.  OHSS isn't an inevitable outcome x


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## yogabunny (Sep 12, 2012)

I had ohss (mild-really! Was agony! ) and my estrogen levels were ok, (although they did blood test, and then I kept stimming 1 more injection before ec, and no blood test before then) 

I had to freeze just because I was in pain, and could not have dealt with it getting worse if bfp.

although it did not work out for me, probably other reasons giving me early miscarriage.

We got excellent fertilisation and blast levels and first fet got a bfp.

If that does happen like this for you there is lots research that says giving your body a rest before ET can even help success. Some countries opting for this approach.

Wish you lots of luck, hopefully they have caught in time and you'll not suffer with dreaded ohss! 

Xxxxx


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## Rayofsunshine (Jul 28, 2013)

Thank you so much for your replies all I do appreciate it  

My levels have increased today to 22,000, I'm not having any gonal f tomorrow and my consultant is going to have me in for another scan and blood test. 

Keeping everything crossed that my levels stabilise ?! We will see what happens. I'll post an update when I can.  

Ray xx


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## K8O (Dec 21, 2009)

Hi

I've had it twice and ended up with a freeze all each time and in hospital for a week each time.  My 2 cycles were managed differently and I still ended up with it after EC.  It's really uncomfortable and I had bad sickness and was unable to drink so couldn't control my fluids.  I had 6 embryos frozen each time and all were good quality.  Our treatment has probably not worked because of the immune issues recently found rather than embryo quality.  I don't remember what my levels were but they were really high.  I have cycled a few times and some people get a lot of eggs and don't get OHSS.  I got 16 eggs each time and got it both times!

Good luck with your treatment and if you feel unwell then make sure you let your clinic know.

Kxx


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## Rayofsunshine (Jul 28, 2013)

Thanks for advise k80 x


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## Cloudy (Jan 26, 2012)

Just to reassure you as I also had 26 follies, so snap on that one! I started on cabergoline and felt poorly, but mild ohss isn't dangerous if it's monitored and they are aware of it. I drank 2l of water and 1 of milk, and had loads of lovely fruit and veg and nuts and seeds. I also triggered with busereline. I got 15 eggs and 4 really good 5 day blasts which I didn't have to freeze all because my levels got into control.

Move about, but no running, jumping or climbing trees  

Good luck honey xxx


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## Rayofsunshine (Jul 28, 2013)

Morning all 

I just wanted to conclude this post, just in case anyone in the future has the same question, or is researching this and wanted to know what my final outcome was... 

unfortunatly my cycle was cancelled yesterday! 

My e2 (oestrogen) levels were sky high (31,000) and if we had gone ahead with EC my chance of getting OHSS were almost inevitable! 

It's such a shame as I had so many amazing follies, 22 in total 15 above 18mm. But that was also the problem as too many folly equals too high e2! 

We are hoping to move onto cycle 3 in a few months when my body has recovered, but will go down a different route with cycle 3, where you skip down reg and go straight into stimming. I will also be on cetrocide next time which is a drug that lowers e2 levels. 

We are very lucky that we have wonderful family and friends who are loving and supporting us. 

Ray xx


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## tazza_uk (Apr 23, 2012)

Hi, 

I ended up with quite severe OHSS after transfer.  A few days after transfer I started to feel awful with all the typical signs.  I called the unit who advised me to go in the next morning.  They examined me and sent me over to admissions where I spent 4 nights under observation and on a drip.

I have 15 follies off my one ovary using menopur and cetrotide with no down reg, but we have been very lucky and successful with the restarted cycle.  At the time I couldn't accept that our first cycle had been cancelled and felt they were pushing us out but looking back, we know it was for the best.

Wishing you all the best for your next cycle. xxx


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