Help! E2 23000 - Potential Ohss

I just posted in LTTC thread - so sorry am doing a cut and paste job - but am
at work and freaking out! Got a call from clinic and my E2 has jumped from 8000 2 days ago to 23,000!!! Today was meant to be my last BT and U/S. My FS has said I need to go back in for BT 2morrow morning and hopefully they will have dropped (so no Gonal F tonight), however if my E2 doesn?t drop they wont be able to trigger! I am pretty gutted, can?t believe have come this far and it might be cancelled or worse develop OHSS! Even if they do collect I am guessing there will be no way they will transfer! Has this happened to anyone? Have you ever had to cancel as well before EPU? And if so what does that mean! I can?t believe how bloated I am ? have around 25 follies just on my LH ovary and at least 10 or the right and they were all a pretty nice size!
I just can?t believe it! I am in shock!


Mon :(

Mon, my understanding is that Orgalutran/Cetrotide can assist is lowering the risk of ending up with OHSS - used sometimes towards the end of FSH treatment. Perhaps you can ring your clinic/FS and speak to them about that?

I'm sorry I haven't any better advice Mon. Hopefully someone who has been through OHSS / at risk of it like BW or BG may be able to offer some more pertinent advice, or sushee may know.

Remeber to keep breathing - I can't imagine that it's easy when you looking at your cycle being cancelled. My thoughts are with you, and I hope you're ok.

Hugs,

Miss C

Mon, replied in the chatter thread but going to put a longer reply here as well. You're probably well aware of my OHSS experiences.

Twice I've had to do a freeze all cycle, but even knowing how sick I've been both times, I'd prefer to collect and freeze rather than cancel and have to start over again. Especially as it just appears that this is what my body just likes to do.

Freeze all cycles aren't really that bad. It is frustrating to not be able to transfer, but you still get some sort of forward progress and don't feel like you're going backwards as you would with a cancellation.

However, my levels with 14500 the first time and 15000 the second... It was rough both times - three weeks to recover, pain, bloating, enormous ovaries... not to mention the fatigue that comes with it. I think I didn't get it as bad the second time because DH got me to hospital pretty quickly after my stubborn refusal to go the first time.

Another side of OHSS is that it can have a bad effect on egg quality. Even if you do go through to collection and freezing, you may find that you just don't get that many. Fortunately for me, that's one aspect of OHSS that I seem to miss out on - adds to the conclusion that it's what my body wants to do.

Chances are good that with no gonal-F tonight your levels will drop. Mine went from 15000 to 14300 over night when I had no puregon, but I was also given orgalutran as well.

If your clinic talks cancelling, I'd be asking questions on what to expect - those eggs have to go somewhere at some stage! Unfortunately, I can't answer that question having been taken to collection both times.

Mon, sending you heaps of gentle hugs :hug: I know the fear, I know the feeling of hanging by a thread not knowing whether you're going to be cancelled or will get to collection. I know the frustration of not being able to transfer on a fresh cycle all too well! :rolleyes:

Ask questions - anything I haven't covered, ask. Be very firm with your clinic and make sure you know what to do and what to expect with all possibilities.

However, I do know that women can have numbers higher than me and not get OHSS. I also know that it's possible to have OHSS and not get all the pain and bloating that I did. My body tends to react a little extremely to many things, and I guess this is just one of them.

Will be thinking of you - and I'm here on the other end of a PM if you need anything.

BW

Something else to add (thanks for the reminder, dusty).

Both stim cycles I've used the half-strength trigger. 5000IU instead of 10000IU, so only one vial of pregnyl powder. It's to help reduce the severity of the OHSS (HCG makes it worse, which is why they don't transfer, and why they use a lower strength trigger), but is still enough to make the eggs do their thing.

Still thinking of you, Mon. :hug:

BW

mon, i agree with BW. be firm with your clinic with getting answers to your questions, and ask more questions based on their answers until you feel you have everything you need to make a decision and be part of your own treatment outcomes. when they cancelled my cycle the day i was supposed to trigger i was in shock and didn't get onto the case until it was too late and the opportunity passed. i regret this now.
:hug:
xx

miss c, BW and Dusty, thanks so much for your feedback! It means so much to me!
BW I cant believe how much you have been through! You are such a wealth of knowledge! I really appreciate your comments and help! I am going to sit down and write a list! I'll keep you posted.
Fingers crossed I dont get cancelled, I am OK about the freezing bit. Just worried about OHSS.
Are there any symptoms I should be looking out for with OHSS?
Mon :)

Things to watch... mainly weight gain, bloating. You'll be fine until after the trigger, just sore and uncomfortable. After the trigger, your ovaries will become even more sensitive - I'd suggest staying at home and resting - you really don't want to do anything else. Because your ovaries will start leaking fluid into your abdomen, dehydration is a big problem. Drink gatorade - most important after collection. I've also been told that sustagen helps, as well as eating a high-protein diet. One thing I learned the hard way - it is important to keep eating as well. As for the gatorade, 2-3L per day minimum.

Having been through it twice now, as boring as it was, I'd go the hospital way rather than toughing it out at home. A few things to note about hospitals, though. Make sure you are going to a major hospital that will actually know how to treat OHSS. I live 4 minutes from a hospital, but made DH drive me to the one 20 minutes away - that's where the clinic had told me to go, where they'd had other women go, and where I knew they'd know what to do. My FS told me stories about women with OHSS being treated wrongly and having strokes. Other thing, make sure everyone you see in the hospital knows you're having IVF treatment, knows it's OHSS and knows there has been no embryo trasnfer. They flipped out slightly when a blood test on Wednesday morning showed HCG in my system (from a half-strength trigger on Friday night), as pregnancy does make OHSS worse. Don't let anyone do an internal exam on you unless they know for sure what they are doing - this is more for pain than anything else. The first scan I had was when I was still in the public teaching hospital - there was a med student present (I had a lovely time telling him all about PCOS, IVF and OHSS), and the doctor was explaining to him that if they'd just seen the scan of my ovaries, they'd be thinking ovarian cancer - my clinic has told me that they've had women being taken for unnecessary surgeries because of this. Probably a good idea to let your clinic know you're going to hospital, and which one you are going to (perhaps even ask them to suggest the best one for you?), and be very, very conscious of what each doctor and nurse does. The simple fact is that you are likely to be admitted to the obs/gyn ward - the nurses there are mainly used to dealing with women in labour, and women with new babies. They aren't that used to working with sick people. I'd have to remind some of them to get my meds, that I was supposed to have a blood test, that I was supposed to be weighed, that I was supposed to be back on the drip 4 hours ago...

The best thing about freeze all cycles - no crinone, no pessaries, no luteal phase support at all. Both times AF has arrived 8 days after EPU, and that's when things have really started to settle.

I'll be keeping my eye on you Mon. :hug: Anything else you want to know?

BW

mon, there is very little i can say to you that BW hasn't already said - just wanting to send you huge hugs hun and hope that things progress to EPU and a freeze all cycle rather than cancellation

and i'll back BW up - HOSPITAL - it may sound daunting but it's the best thing if you start getting bad - please don't be reluctant to head down that path - you'll do much better recovering with help!

BW - again THANK YOU so much for your time! Really! I just want to hug you! BG thanks for your thoughts! I'll keep you gals posted! I am truly armed with the ammo I need! I am really lucky for that :)

I'm glad someone is benefiting from my experiences. I'm serious about the hospital visit if you wind up there. I'm on holidays now, have no commitments (other than a desire to spend copious amounts of time slothing in my PJs), and can easily get in to see you. Hell, I'll come and take you to hospital if necessary!

Forgot to say - watch the difficulties breathing. If you start getting bloated, it can squish your lungs a bit and make breathing a bit more difficult than normal. That and the dizziness were the things that really got me this time. Weird thing is that both experiences with OHSS have been fairly different.

BW

Thanks BW! Watch out I'll probably take you up on the offer!
Lets hope all goes OK ... have major anxiety / tension in the solar plexus region! Need to go chill I think!
Will keep you posted hun! :)

Hi Mon,

My E2 was around 16000 a day before trigger. I was given the option to cancel or do a freeze all cycle. I cried when given this news as it was not what I expected or had in my mind as the end point in my cycle. I decided I had gone that far I didn't want to come out of all that effort with nothing so I elected to go through with EPU.

I had also posted on here when I found out about my E2 levels. BW responded to me too (thank you) and I carefully monitored myself.

I was feeling sore after the EPU, especially a few days after and every little twinge I would wonder if it was the onset of OHSS. Fortunately for me, I didn't escalate to that, but I didn't have that many follicles either (I got 10 eggs). I did feel more tender than previous cycles though. Perhaps, although I had high E2 levels, the number of follicles did not lead to OHSS?

I hope you can also avoid OHSS, but take care.

hi mon, take care hun, listen to these wise women (:hug: to you wise women). listening to experience is the key as you can avoid the worst of OHSS by being really careful. i understand how sad it is to cancel but your short and long term health and fertility may be best served cancelling if it comes to that (and i really hope it doesn't). remember those OHSS stories in the book "making babies" - you don't want that hun.
sending you loads of hugs and love and i will be in to check up on you (i didn't end up going to blue mnts with DH - another story). xx

ohhhh Mon,
Baby i hope you are ok....with no ohss. I'm about to start on the gonal-f injections and i was already scared of the pain of jabbing myself in the belly and now i'm terrified of ohss too. I don't have the time to be out of action. I cant even find the time to get a pedicure let alone a hospital stay. My fs specialist said the way he does things is you start the gonal-f then do that for a few days(sorry i'm vague) then have us,then depending on that maybe more gonal-f then another ultrasound then a trigger shot if there arent too many follies there. He said if there are too many, we avoid intercourse (and maybe the trigger-not sure) and wait till the following month as i'd prefer to avoid multiple births if i can. Its so hard not knowing what my body is going to do-clomid did nothing. I havent ovulated for years. my cycles are all over the place. Will the gonal-f and trigger give me a 28 day cycle?I'm waiting for af now and this is like day 38, i've been feeling like i've had it(moodiness,and pain for the last ten days)but no show.I find once i get it my symptoms disapate. My heart so gos out to you BW;you are such an absolutely incredible and loving person. i don't think any baby is more deserving of a mummy like you. when this blessed being comes into your arms it will be home. You have had such an awful time of things and the wealthof information that you pass on to all of us from your very own personal and painful experiences is invaluable. I so hope that 2008 is the year for you and your frozen embies-get with the program and do their thing...lol Girls i truly appreciate all of your support and advice;its official belly belly is my homey.......

CeCe thanks for sharing your experience! Although an awful thing to go through, it is comforting to know I am not alone! I was kind of feeling like a freak with such crazy levels! Thankgoodness they have gone down a bit and we'll see what the prognosis is on Monday! I am hoping that I still get to go ahead with EPU. It will be a freeze all cycle if it does go ahead!
Pollyanna thanks for your well wishes! I hope all goes well with you! Although we place our trust in FS hands it really does pay to be informed and keep abreast of your cycle! If I have to do a stim cycle again, I will be insisting on daily BTs so it doesnt spiral out of control! Now I know but you dont really know until you go through it! Wishing you all the best and a BFP asap!
Dusty, hope your change of plans were better!? :)

The daily blood tests didn't really help me much at all the second time through... I suspect that with PCOS, it's really just a matter of getting lucky. They can do what they can to help, but sometimes it just can't be avoided.

I can be a bit of a hot-head when OHSS is involved - just having been there I know you really can't mess around with it. :redface: Glad my experience helped you though, CeCe.

Mon, will be hoping for another drop in levels by Monday - although, if you are just having synarel/lucrin and no puregon/gonal F, then you should be fine. Take care.

BW

BW that is interesting, it really is like russian roulette then ehh! Gotta love it! Yep am just on the Synarel, and apparently if cycle gets cancelled will need to keep taking synarel so that I dont ovulate and that my follies shrivell up! I can imagine it will be one hell of a painful AF!!! Not liking the sound of that either! :)

Ick! I'd hate to have to continue to take the synarel for that long! I do hope you get to collection... sure, the OHSS is hell, but you can deal with it. I had no idea they did that if they needed to cancel. There you go!

BW

I know! I feel the same, the thought of having to continue with the synarel so doesnt appeal! You're right I suppose I will just have to deal with whatever outcome! Was reading that 'coasting' which is what they are doing with me - ie no GnRH (Gonal F) to reduce E2 levels, wont necessarily reduce risk of OHSS! So am just going to try and rest and stop stressing! But will be quizzing the clinic like mad tomorrow! I hope I do get to EPU! A bit of patience!
Mon :)

Mon, it did seem to help me... And I only did it for a day. Despite my E2 levels getting higher and getting more eggs with the second cycle, I didn't get as sick as the first time. There's some debate as to whether that's because we knew better how to deal with it, because I went to hospital, or it was never going to be as bad. I'm convinced it won't stop you getting OHSS, but I'm sure that it can make it not as bad.

I'll be keeping my fingers crossed that your levels come down to a reasonable level and you do get to EPU.

As for the strokes and things - that's talking *severe* cases. That's why your clinic is being so careful, and why you won't transfer. I'm sure you'll be fine. :hug:

BW

Thanks BW ... its so easy to get ahead of yourself and think the worst! I suppose its not as doomsday as what I was feeling yesterday! I think once the shock subsides you think a bit clearer! I think I will be OK either way, but hoping I still make it to EPU.
Hope you are having a nice relaxing Sunday! I dont feel so guilty slouching around when the weather is so crap!
Mon :)

Thanks to everyone for their advice over the past few days! Went to clinic this morning and just found out that my E2 dropped from 20000 to under 2000. So my cycle unfortunately has been cancelled as my eggs will no longer be viable! I am really surprised that my levels could have dropped so fast! But it was probably meant to be this way! At least they know what protocol will be best for next time around!
Thanks again everyone!
Mon :)

Ouch! Sorry to hear that, Mon. At least you aren't going to wind up in hospital just before Christmas.

Better luck next time... and hopefully they've learned a heap about your response and can avoid this happening again.

BW

Really sorry to hear that Mon. It would be nice if IVF was more predictable at times wouldn't it?

It looks like you're going again in Feb08. I'll keep my fingers crossed for you then.