Ohss anybody?

[lanet]

I had my first ivf egg retrieval on May 5, they retrieved 22 eggs. I was on 150 follistim and 75 menopur for 10 days. My estradiol on day 8 was 2825. I had been extremely bloated and weak for a couple of days before so even though I was in some pain, I felt some relief the night of retrieval. The next morning I woke up with shoulder and rib pain and started to get very bloated. It just felt like I was so full of air. I kept asking people if this was normal and the consensus was yes, bloating is normal after er.
2 days before our 5 day transfer the bloating was so severe and my stomach was seriously distended and hard, I knew it wasn't normal. My dr instructed me to sleep in a reclined position and to come in early for transfer so she could do an ultrasound. I live 3 hours from my clinic. She told me to mentally prepare for her to do a freeze all because it sounded like ohss. Well ultrasound confirmed lots of fluid in my abdomen. I've been on a strict protein, sodium, Gatorade diet since er. On day 4 and 5 I gained 4 lbs each day. A total of 13 lbs. I'm now starting to feel better and I'm down 7 lbs (9 day after retrieval) I still can't sleep laying down or on either side without a crushing feeling in my chest. I still have shoulder pain. And my blood pressure is elevated. It's been the worst physical thing I've ever gone through, so scary and isolating, I feel like the last 2 weeks are a blur. I'm so thankful my dr canceled transfer and we can do a FET when I'm recovered. I'm iust wondering when I will feel like myself again? And will this have any long term effects?

 

[nlk]

I had severe ohss, and I'm so glad I opted to freeze all. The fact is, which few people mention/realise, is that it can kill you. If your weight is going down then that's a good thing, but the crushing sensation (for me) were my lungs slowly filling with fluid as well. It actually took a good few months for me to feel like I'd actually healed, and the bruising on your ovaries from them being so enlarged can take some time to go down. Make sure you carry on taking it easy. Whilst the pain may still be there in a small capacity, you should be ok in about 6 weeks or so.

Personally, it was the emotional pain that I found toughest to deal with. Psychologically, it took much longer to recover from the ordeal than simply being physically healthy enough to go ahead with the FET.

I'm really sorry you had to go through this. If you want to talk about it at all then please feel free to message me

 

[lanet]

Thanks, I was finally able to sleep laying down last night, with the right combo of pillows I was even able to lay on my side and it was the best thing EVER!
I've lost 2 more lbs. my numbers were off, I guess I gained the 13 over a few days but really I gained about 15-17 total.
Did you go on to do your FET or no?
I'm so thankful for the freeze all too. I can't imagine that being any worse or lasting any longer and I need a break. As soon as I came out of sedation the first thing my dr said was "22 eggs, I want you on a high protein diet, if you show signs of ohss we will do a freeze all" so I feel like she knew then that I was at risk. I'm so thankful it happened before transfer and not after!
Did you have risk factors like lots of eggs, high estrogen?

 

[lanet]

And how long before the fluid went to your lungs? Were you drained? It's also been scary being so far from my clinic and with a condition that most drs know nothing about.

 

[nlk]

I spent about nine days in hospital because it was so severe. After three days, the fluid in my abdomen was going down, so they were going to discharge me and let me recover at home...then they realised that they fluid wasn't going, it was just leaking through my diaphragm and into my lungs! So from days 3-8 it was getting worse...I wasn't drained, but it was discussed at length. I think their main worry that I was already so unwell, and though the drain would take pressure off of me, it would increase the risk of infection too much. On day 8 they gave me 24 hours, and said if it continued to get worse then I would be drained, but it started to ease

I actually never went into my FET. As I said, I struggled so much psychologically after, I actually said that I never wanted to go back to my clinic (who when I called to ask about OHSS told me I was fine, and it was normal - so I went to A&E). My consultant at my local hospital actually was looking at ivf hormones restarting your system, so allowed me to drop down to clomid/letrozole drugs. I said I would go back for the FET in six months, to give myself enough time to recover with counselling, but I got pregnant the first month of ttc after being discharged!

I had 40 follies, 26 eggs collected I think. They knew I was at risk, but seemed to not be overly bothered. I had high AMH (fifty something?) and pcos. I was given 75units to start off with, and three days into stimming was stopped because I was already so bad (was meant to stim for 12 days).

My clinic actually called me after and tried to convince me to go ahead with the transfer - whilst I was lying in hospital on oxygen support! My local consultant later told me that he called my clinic (like you, two hours away) and had a go at them for suggesting I was capable, and fully explained how bad I was He later told me I'd probably have died, had I gone ahead with the transfer!

 

[lanet]

That's terrible that your dr was so irresponsible! I'm glad you were smart enough to not go through with transfer despite them suggesting it! My dr absolutely wouldn't so it. I really felt she was on top of things. My bloodwork came back perfect despite the abdomen full of fluid and I think it's because she had me on the Gatorade protein diet since retrieval. I wasn't even allowed to drink water. She even instructed me to eat fried chicken and to replace 2 meals a day with whey protein shakes. She also talked about draining during the ultrasound but said it's a procedure that comes with it's own risks and can so things make things worse so it's used as a last resort. She got really nervous when I then gained 8 more lbs after the ultrasound but then the next day I started feeling relief. I'm so thankful it didn't go to my lungs!!! That must've been so awful, I was definitely worried about that. My stomach was so big I thought my skin would rip and I had to really struggle to get a deep breath. I will never do a fresh cycle again but I'm so thankful for my 6 frozen embryos!
Here's a before and after of my belly.
https://i137.photobucket.com/albums/q219/kristylanet/Mobile%20Uploads/image-8.jpg

 

[lanet]

Oh and I meant to say so awesome and congrats on your pregnancy!!!

 

[nlk]

Thank you

I remember the stretched belly! I think I was probably the same size as I am now at 24 weeks pregnant! With the ohss someone did actually ask when I was due. Depressing!

Even now, I remember the sensation of not being able to breathe. If I sleep in a bad position and bubs is on my lungs slightly I wake up in such a panic...forgetting im pregnant and thinking I'm drowning again. I don't think I was given enough support to adjust to being pregnant after the experience of ohss.

I'm the same, I would never go back to a fresh cycle. Have you booked your FET now?

 

[Disturbia]

Sorry to hear that lanet. Hope you are feeling better now. I didn't experience ohss although have a high risk to suffer from it because of my pcos. I took prevention by drinking 2 bottles of gatorade a day and eating egg white during stims. Eventhough frozen embies look ugly after thawing, they have better chance than fresh ones I heard. So when is your fet?

 

[lanet]

Thanks girls. Nik I inderstand not having enough time before you got pregnant, I'm feeling quite traumatized and keep analyzing everything I'm feeling and I'm so thankful I have a break to feel normal for a bit and that I didn't do a transfer.
Disturbia I also ate a ton of eggs during stims, more bc I heard it could help with egg quality. and I started the Gatorade about 2 days before egg retrieval after calling the nurses line and telling them I wasn't feeling right. My dr said my estrogen wasn't sky high, and that while 22 eggs def put me at risk, it wasn't like it was a crazy amount. It seems like it's some unlucky lottery! When I did an iui with clomid and an iui with injections, I only made 1 follicle! So who knew id suddenly respond like this. I'm glad you were able to ward it off though, I've read that pcos definitely puts you at risk.
I'm feeling really good today. I'm not taking it for granted. I keep looking around and just being soooo thankful that I feel good and that it's over! I've lost 10lbs now. I go back to work tomorrow.
I started spotting yesterday so hopefully af shows up today, then I call the clinic and get on birth control for a few weeks and then if baseline looks good I'll do estrogen patches for 2 weeks and then FET. Thanks for saying they have better chances. My embryologist told us that they were seeing astounding fet success out of this clinic and that my 5-6 day embies were excellent. So that made me feel good. I'll be transferring 2 and praying for twins.
I can't get ohss from a fet though right?

 

[nlk]

Definitely can't get ohss from a FET. It's from over stimulating your ovaries, and for a FET all you do is thicken the lining for implantation (in really simple terms!). Can you update after your FET? I'd love to know how it all goes for you

 

[lanet]

I'm hoping to do fet on June 27th. Af is here and that gives enough time for all the preparation but the nurse wanted to make sure the dr thought it was enough time after the ohss.
I'm having pain under my rib now. I was feeling great for a few days and now this started yesterday. Not sure if it's related or not... It just feels like trapped air but it won't go away!

 

[cali_kt]

I am so sorry that you went through that. I also had OHSS and it was the worst thing ever. I thought I would burst wide open, slept sitting up, had difficulty breathing and could only eat 2 saltines a day and half a gatorade. It was horrible. And I took pics like that too. I am glad you are getting better though. It is something I do not wish on my worst enemy. Lots of luck with your FET. I had mine 3 months later when I was ready and fully recovered. Don't push it. Because of what I went through... I will never go through IVF again. No ER ever for me!!!

 

[lanet]

Thanks! I will also never do er again!
It will be 53 days between er and fet, do you think that's long enough? I'll be on bcp for a few weeks (I started them today) then estrogen patches.

 

[lanet]

Just to update you ladies I'm 7 weeks 6 days pregnant with TWINS from my FET!!

 

[Disturbia]

Congrats Lanet! Twins so exciting! Wish happy&healthy mommy and babies! I'm currently 6 weeks 5 days with singleton.

 

[lanet]

Oh congratulations Disturbia!!!