OHSS

I know this has been discussed time and time again but i wanted to put it to you lovely ladies and not just the DR's

If a lady is suffering from OHSS but with no other symptons other than swoolen ovaries (about 10cm each) and a bit of back pain, and feeling sick, not being able to walk to far or sleep

I understand that if a pg accures then the risks are great and that it all depends on the individual but what should you expect and roughly how long for ?????

Other than keeping fluids up, measuring stomach what else is there to do ????

Loula,
I am not 100%sure but my latest SIVF book says that if you have the runs, are vomiting and are in a lot of pain call the clinic asap, otherwise after egg pick up your ovaries can fill back up with fluid and the full ovary feeling can last a few weeks. If unsure i would ring your co-ordinating nurse.

Lou, there is basically nothing you can do but rest and keep fluids up. I was doing reasonably ok with mine until I got the stupid idea to go for a walk - even though I took it easy, it still made the OHSS so much worse. I also had a lot of drugs to help bring my levels down, stop my ovaries leaking so much and cope with the pain. We knew I wasn't going to be able to transfer as my levels were so high before collection so I started on the drugs straight away, but still didn't start to feel better until AF had essentially been and gone. Three weeks all up that I was completely out of action, and a couple more after that before I was back to normal.

I'd be very, very wary of proceeding with transfer. I know your symptoms don't seem anywhere near as bad as mine, and I only barely stayed out of hospital (more through stubbornness and refusal to go rather than not needing it), but I do know that pregnancy can make OHSS so much worse and longer-lasting.

It's such a difficult position to be in. Take care, Lou.

BW

Thanks ladies

BW - i was told there was no drugs that i could take to help lower my levels as they are way too high

Lou

You poor thing! That sounds absolutely horrible. I am so sorry that this has happened to you. I agree with what BW has said - all of my research on OHSS supports it although I didn't have any symptoms nearly as bad as you do. I know that doesn't make it any easier for you but if you are in any doubt, call the nurses and ask, ask, ask - I did and I found them very helpful. I am sorry that I can't offer any more info than you already have. Take care and rest up - your health is the number one priority at the moment!
Cherylxx

I have had OHSS everytime I had a cycle Lou. And this time when we had success - everything worked out fine. Unfortunately rest and fluids is all you can do - the fluids help flush the excess hormones away...

If you like PM me your levels and I will be able to compare them with mine - although I imagined everyone gets affected differently...

I had moderate OHSS first cycle >20,000, mild second cycle >14,000 - both with no BFP.
Did very well third cycle with no OHSS symptoms <10,000 woo hoo so they gave me the final luteal support HCG injection. Then I immediately got mild OHSS but not as bad as 2nd cycle. All symptoms went away about 3 days after day 5 transfer so held no hope. But then 6 days after transfer I now have mild to moderate OHSS symptoms again. The pain and swelling ouch. Currently 9 days after transfer and 14 days after EPU and 12 days after final HCG shot.

I didn't have vomiting or diarrohea, rather constipation, bloating, aching, cramps in the ovaries and hips, intolerance of my normal clothes and sharp pains from my ovaries extending to my ribs. I can't move fast or stretch out or bend down. minimal weight gain though and the bloody headaches and inability to eat more than a small meal.

good luck with yours. I so hope for you. My symptoms at the moment are about 3 times worse than just after EPU, but not anywhere as bad as my first cycle. My FS did say to expect a large increase in symptoms if pregnancy occurred, but I didn't expect all symptoms to disappear then reemerge with a vengeance.

I'm very regular and AF is due today according to last 5 transfers (2 fet), but have no symptoms of AF this time. Just did a HPT and got a strong positive, but not getting my hopes up as it's the first time I've had that HCG support shot, and I have read and read it takes about 10 or so days to leave the system. Fingers crossed heaps but feeling much calmer this cycle.

Again good luck. From what I've read if you become pregnant the symptoms slowly get worse until around 4-6 weeks after EPU and then start easing off. But then again every person is different. Make sure you weigh yourself morning and night as in severe cases you can put on 2 or more kilos in a day, by this time though you won't be walking (I put on 2 kilos in one day and couldn't get up or walk when I had moderate OHSS and I didn't even need hospitalisation then!). Sorry I don't give you much hope of the symptoms disappearing overnight but it does apparantly get better eventually.

Just wanted to bump this back up and ask a question?
I know that you are suppose to keep your fluids up to avoid OHSS, and have been reading about drinking gatorade etc..

But, are you girls drinking only water? a combination of water and gatorade or just gatorade?

I read somewhere the other day that gatorade isn't good to drink because it contains salt, which obviously dehydrates you (though I imagine you would have to drink quite a lot of it for that to happen)

Nic

I did water only Nic and had no worries with OHSS at all. I was vigilant with it making sure I had 2-3L every single day & not much of anything else. If I did have a drink of something else I would just keep going with the water & wouldn't count other drinks at all. I don't drink coke or coffee either so no issues there with diuretics.

I've just spent 8 days in hospital with severe OHSS - even went into ICU! very scary. I still am 11kg over my pre OHSS weight and had 3.5L drained. Drink, drink and drink even though it hurts, monitor your output. Don't drink tea or coffee or any fizzy drinks (the pain is excrutiating!).

Good luck. It took 5 days to come on severely, then another 8 in hospital, i've been home 2 days and i've been told up to 2 weeks before the fluid will start to go.

The best news for me is that I'm pregnant. But gosh, my OHSS prior to this bout was nothing and I thought it was bad at the time. But when you're hooked onto a drip, catheter, and pain relief constantly plus blood thinners and albimum transfers and getting drained it's really scary and painful. My doctors said any drink especially milk and water is fantastic, just not coffee and tea.

Hi everyone,

I'm scheduled for EPU on Friday, and my doctor said I am potentially at risk of OHSS. I currently have about 13 follies (quite a few around 14mm and a few which are more mature), estrogen around 2000-3000 and I also have PCOS. My doctor has said that depending on what he finds on Friday, we may need to freeze any embryos which result, and do a frozen transfer next cycle.

Has anyone been in this situation? How do they decide whether the risk is high enough not to proceed with the transfer? And is there anything I can do to prevent OHSS? I know I need to drink lots of water and eat protein....

I thought OHSS only occurred in the case of very large numbers of follicles...

Can anyone shed any light on this for me?

TIA! :)

oooh, me! That was certainly me, Scarlett!

First of all, let me just say that if they believe that you are at risk of OHSS and suggest that you freeze all embryos, go with it, don't argue. OHSS is nothing to play around with - I was sick for three weeks. Completely off work and virtually bed-ridden. If you are pregnant, it gets worse, and lasts longer - not something I would wish on my worst enemy!

When it comes to freeze all cycles - it's not so bad. I found it great to not have to muck around with the crinone and as I could later on use ovulation induction to do a natural FET, I was really happy with everything. I became pregnant on that first FET as well, so it certainly didn't effect the chances of things working or not working. Sadly, I miscarried at 8.5 weeks, but that had nothing to do with the fact that it was a frozen embryo, or the fact that I'd had OHSS.

I know the OHSS thing sounds scary, and it really is if you develop it, but if you follow their instructions, you will be fine. It passes in time, and won't effect later transfers with any frozen embryos you get.

I'm just going to have a quick chase around for my levels so that you can compare them with yours. Back in a tick!

BW

Scarlett, below is a little summary of my puregon dosages and my estrogen levels as I went through my cycle.

:

---

5 days of 150IU, 283 - we get to double the dose of puregon.
4 days of 300IU, 2834 - clinic starts stressing and cuts my dosage back
2 days of 200IU, 9200 - I'm told told 10000 is the danger level so I'm running very close to OHSS here.
1 day of 100IU, 13200 - I'm in BIG trouble here, and told that transfer more than likely won't take place
1 day of 75IU, 14488.
Final dosage of puregon is withheld - the following day I just have a lucrin injection, and the day after that is my trigger, half strength (5000IU instead of 10000IU) to try to reduce the severity of the OHSS.

---

In the end, I had 26 eggs collected. I woke up from my egg collection screaming and crying where all the other women just woke up and started chatting to the nurses. Seems to me that your levels are much lower than mine, 5 days before EPU I'd already hit the 9000 mark. In comparison, you may get OHSS, you may not be able to transfer, but you more than likely won't get as sick as I did.

Hope this gives you some comfort.

BW

Thanks BW - that definitely does give me some comfort. :)

Hi
I don't know what my levels were, but based on them the clinic didn't think i'd get it (and only 14 eggs too)... then i did, right after the 2nd hCG support injection (neither of which I should have had).
Absolutely agree with BW - it's best to avoid OHSS if you can.
If you do go ahead, make sure you're drinking heaps of fluids and let the clinic know of any symptoms you get.
Good luck with your cycle!

I'm in the process of my third IVF full stim cycle. With this cycle I've been using 300iui of puregon - up this time from 200 last cycle.

Last Friday my eostrogen was 4100. Yesterday it had jumped to 13,300 so I required another blood test today. Today it is 16,000. As a result they gave me the choice of cancelling the cycle as the trigger will also increase this level, or go to collection but do not do a transfer. :(

I've decided to continue with the collection - since I've come this far and cannot 'just let it go'. I'm really concerned the first cycle we only got two eggs and only one fertilised. The second we got 7, only 5 fertilised but most were fragemented so deamed not suitable to freeze - wouldn't survive the thaw. :(

Does higher eostrogen levels increase the quality of eggs or is this simply an age/diet thing? I'm so worried that all this will be for nothing and none will be freezable.

Anyway, any help, reassurance or advice would be greatly appreciated as I just feel like crying.

Hi CeCe, I've been in your position before, and it really is a little scary!

I got a pretty bad case of OHSS on my first (and only) stim cycle. We went to collection and got 26 eggs, of those, 21 were mature enough to use, 15 fertilised, 12 made it to day 3 and 4 made it to blastocyst and were frozen. As you can see, we did pretty well in that department! We have had one FET cycle since then, which was successful, but miscarried at 8.5 weeks. We've had some time out, and are looking to get started on another FET cycle within the next week or so.

My levels were fairly similar to yours, but you're a bit higher than me. After 5 days of 150IU and no response, I was bumped up to 300IU for 4 days, with levels then shooting up so we then went onto daily blood tests and I had my dosage reduced each day. My final puregon dose was withheld, so I only had lucrin the day before my trigger. My trigger shot was at half-strength (5000IU instead of 10000IU), which they said was to try to keep levels down and reduce the OHSS.

When I woke up from EPU, I was in so much pain I was screaming and crying and every single sob sent waves of pain through my vagina - it was absolutely horrible, and I kept seeing the other women around me waking up fine, with no problems at all. The first few days weren't too bad, apart from the bloating, and I probably would have fought for a day 2 transfer if that's what we were going to do. On day 3 everything got really bad. In the end, I was bed-ridden for three weeks, and only barely stayed out of hospital. I hate to think just how bad it could have got if we had transferred and it worked - I didn't really start to get better until after AF had finished.

I know it all sounds scary, but having been there, I know that OHSS isn't something you want to muck around with. If I were in that position again, I'd go through with collection, and happily freeze all once again (it's actually great not having to use the crinone!). I have to be honest, and say that I'm told that OHSS can reduce the quality of the eggs, but it didn't seem to happen in my case.

I do want to wish you luck, and I'd really strongly suggest you do go with the freeze all option, and be prepared to be sick for a while after collection. You may come through ok, you may not... I do think transfers are just too much to risk in that case.

BW

Thanks BW.

I've just been googling OHSS to see what to look out for as I couldn't remember. In my head I know it's not to be messed with ... it just seems like I've been focusing on the transfer as the completion of the cycle but now I just have to rethink that.

Thanks for your reply and support. My EPU is Thursday morning, so here's hoping for a good outcome - under the circumstances.

I was trying to be honest, but not be too brutal with it. But, having been there, done that - freezing all is honestly the best way to go. I'd had so many dramas up to that point (not responding to drugs - the pill, synarel, a trigger shot - lots of bleeding, 36 out of 50 days in fact) that it was a relief just to get to EPU, and even more of a relief that we weren't transferring then. I knew my body had been through too much and it would simply be a waste of an embryo.

Good luck with the EPU - I'm not sure if it helps any to know what you are in for, but I'll certainly be hoping and praying you come through it a lot better than me! Keep the gatorade on hand, and make sure you can rest a lot.

BW

I appreciate the honesty. I find IVF such a mental juggling act between staying positive but being realistic with expectations that honesty is what I need to be realistic (if that makes sense).

After going through all of what you've described it's no wonder you are taking a short break. I hope it's going well for you.

It's gone very well - I've spent some time seeing a psychologist to help deal with some severe anxiety issues which were aggravated by the IVF and miscarriage. I've found it has improved so many aspects of my life and I'm actually genuinely happy for the first time in what feels like forever. More relaxed, more at peace and no longer worried and stressed about everything. Major life improvements that would never have happened without infertility, IVF and miscarriage so it's hard to feel too down about being in this situation.

I'm glad I didn't scare you too much. Although, I do know of one woman who was deemed to have OHSS and wasn't allowed to transfer, but had no symptoms and especially no pain like me. So it may not be as horribly unpleasant as what I experienced. But I think it would have been a little less scary if I'd had some idea of what to expect.

BW

Well I was hospitalised for 8 days with severe OHSS, transferred to ICU, drains and albimum transfer, 16 kilos gained in 6 days, 3-4L of fluid dripped in daily and only 10mL/hour output, pulmonary embullism ???, and my blood clotted so badly they couldn't draw blood except from my arteries (and they had up to 3 attempts each blood collection to get 1/2 vial) which hurt like absolute hell.

Each cycle bar the last one I had mild - moderate ohss with a BFN, and this one I didn't have any ohss symptoms and my blood levels were only slightly higher than normal. With your levels (slightly lower than my first and second cycle levels I would not recommend transfer.

If you fall pregnant from the transfer, which I did, your OHSS disappears for a few days or is relieved until the pregnancy HCG kicks in about 5-10 days after transfer. Then you'll go downhill very quickly.

Take it from me, pregnancy HCG increases the OHSS severity 20 or 30 fold. the pain is enormous. I was living on pethidine, morphine and panadeine forte alternated and was trying as hard as possible to hold off the painkillers.

Put it this way, I was borderline critical OHSS, which involves the kidneys and liver shutting down, draining the fluid from your lungs too, and an abortion of the feotus for the mothers safety as this immediately reverses OHSS. This isn't an optional abortion either. All of these things I did not want.

I'm not trying to scare you, but you haven't heard half of the agony I went through, but sheesh I was scared when I was having 15 min obs in ICU. with your levels and if pregnancy occurs you'd be hospitalised very quickly and be in a lot of pain.

I've now been out of hospital 3 weeks and only just drove my car. I still can't shop, bend, stretch or carry anything heavy (agony on the ovaries). I can only walk slow, I can't use my tummy muscles to sit up or roll over for the pain and certainly can't walk far.

I found in my cycles that the meds seemed to pass over to the next stim. cycle so I needed much less each time. I wish you luck and NO OHSS.

Hi Girls,

I am currently in my First IVF cycle after 4 failed IUI's and have just had my 2nd ultrasound... It showed 20 good sized follicles, 12 on the right and 8 on the left.. My EST on Saturday was 6600 which they told me was pretty high for that stage of my cycle... Increasing my changes of OHSS. I've had another blood test today and wont get the results back till tomorrow afternoon which is when I will be told whether the cycle is to be cancelled or not... If my level doesn't go up much or stays put (which I doubt), then EPU will be on Thursday...

I just wanted to see if anybody has been in a similar situation, where you've had a large number of follicles and high EST and what you were told... Im stressing out thinking it'll be cancelled, but at the same time don't want to end up getting OHSS and end up really sick... Has anybody had a really high EST level still went through with EPU?

Thanks in advance..

I am currently on high alert with my clinic with OHSS. I was admitted into hospital last week overnight but now have to have a blood test every 2nd day. My OHSS was not noticed (or maybe even started) till day after my transfer 23/10 when a blood test was done to see what dose of HCG i should have. I had 16 eggs collected and felt fine during the whole thing. I was fairly bloated and really tired but otherwise fine. Because mine happened after EPU its a bit defferent to you. So thats all I can really tell you and I hope it helps. Just remember to drink 3 ltrs of water a day. It helps so much as thats what enabled me to get discharged from hospital.
If you have any question please do not hesitate to ask

Claire

Thanks for your reply Claire. Hope you are on your way to getting rid of that OHSS!!

What level was your EST at with 16 eggs?

I am trying to drink as much as possible... I'm on the toilet half the day LOL but trying my hardest to stay hydrated...

Any other comments would be appreciated.. thanks.

Lisa, I had a pretty bad case of OHSS with my stim cycle. I have previously posted what my E2 levels were, I'll have a search and see if I can find the info again.

Brief run down - my levels jumped from 283, to 2830, 9200, 13000 then 14480 (or thereabouts, I don't remember exact days or levels except for some) at the last blood test. I ended up on daily blood tests in the end, and my final dose of puregon was withheld. Day before trigger I had lucrin only, no puregon at all. My trigger was reduced to 5000IU instead of the normal 10000IU dose...

Egg collection saw us get 26 eggs - where the other women having EPUs that day woke up ok, I woke up screaming and crying because the pain was so bad. I also woke up to the words "freeze all" on my hand, indicating that I was so hyperstimulated they were not going to risk transferring at all.

It is scary - watch the hydration, keep up your protein intake and consider (especially after EPU) switching to gatorade/powerade instead of water. It really does help. Even taking all sorts of drugs to bring levels of something or other (VEGF?) down, it took three weeks to recover, and the only thing that kept me out of hospital was sheer bone-headedness and refusal to go.

Good luck with it all, and I really hope you don't end up as bad as me.

BW

Hi BW,

My last injection was today's, they are putting off tomorrows just in case... My clinic said anything over 15000, they will pretty much cancel it.... my issue is.. should I push for EPU and just not have the transfer... It all depends on how high my level is tomorrow I guess.. I really DONT want OHSS in the end... but having the cycle cancelled before EPU is messing with my head..... I just think - what a waste?? But I know I have to put my head first and think about my health...

Thanks for the tips and well wishes, hopefully I get to EPU stage, and then I can go from there..
xo

Even having been there once before, if I were in the same situation again... I'd push for EPU and freeze all again. Just keep in mind, it does impact on egg quality, but even the two embryos that made it through blast, freezing and thawing to get transferred both took. Sure, both miscarried, but one was for reasons totally unrelated to the OHSS and the freezing. The other was a much earlier miscarriage, and we're not so sure on that one yet.

It's a tough call to make, but I'd do it again.

BW

Thanks for your opinion BW, I really appreciate it.. I think I'll just wait to see what the nurse says tomorrow then I'll weigh up my options if they give me any! Hope all goes well for you, good luck with it all..

Anybody else who has been in a similar situation??

I dont know what my levels are as i didnt even ask....im a bit slack when it comes to that sort of stuff...so sorry cant help you there. Hope all goes well for you though

Claire

Hi Lisa,

My 3rd cycle and two days before the scheduled pickup my estrogen level was 16300. Anything over 13000 at my clinic (so I was told) they get concerned about. I was given the option to cancel the cycle then and there or continue to pickup but they were saying to 'freeze all'. I opted to go for the pickup because I had gone so far and didn't want to loose all hope of the cycle acheiving something. I got 10 eggs - compared to some this is not many but for me it's the best i've done so far.

I was a bit sore about 3 to 4 days after the pickup and every little twinge made me worried that it was the start of OHSS but I managed to get through without it (or no symptoms worse than previous cycles). I just drank lots of water and poweraide helped a lot too.

Anyway, this post may have been too late for your decision but I hope things are okay with you.