High AMH scared of OHSS

[Pugmumfornow]

Hi all I’m almost 30 with PCOS and have just received my AMH, the nurse seemed shocked when it was 117, does anyone have experience of a AMH this high? I’m scared about OHSS?

I haven’t got PCOS but my ovaries went crazy on my fresh round in August. To avoid severe OHSS, I didn’t have a fresh transfer and was put on Cabergoline which seems to prevent OHSS.

As the worst cases of OHSS develop if you have a bfp so unlikely to happen if your clinic is sesnsible and does a freeze all + throws in Cabergoline just to make sure.

I ended up just getting a bit bloated + getting Cabergoline side effects so not too bad (they’d collected 36 eggs although almost half were immature).

Oh, and also when my ovaries were going crazy despite the dose being lowered to next to nothing, I was monitored daily and triggered 2 days sooner than initially expected.

Mine is 112 so pretty much the same as you OP. The clinic managed my short protocol really carefully and put me on the lowest dose of drugs, and I was scanned and had bloods every other day to keep an eye on things.

As it was, I was actually quite slow to respond over the two weeks of stimms and they only expected to retrieve 10 eggs. I ended up having 20 taken, 14 of them mature, so there must have been a late surge in the last couple of days. Only two of the buggers actually fertilised but that's another story!

I was very sore and bloated for the four or five days following EC but all within normal range and no sign of OHSS.

Don't worry, the clinic should know exactly how to treat you, and like JoJo says there are lots of tactics they can employ to protect against OHSS - coasting, different trigger shots, freezing etc.

Good luck!

Thank you for your stories, it helps!!! it’s my first round and I’m really hoping I don’t have to freeze all, it’s been so long, no FET would feel like blow x

I know it’s easy to get impatient but even with a freeze-all, you can go for a FET 2-3 months later. It also gives you body time to recover and many clinics report higher success rates with frozen rather than fresh cycles.

Hi
I'm similar to JoJo in that they collected a lot of eggs (31) on my second cycle and I had the preventative meds to try to minimise risk of OHSS.
I have PCOS but no idea what my AMH was.

As it turned out, I did still get a mild case of OHSS. They suggested not going ahead with the fresh transfer because the risk really goes up if you get a BFP. They point blank refused to transfer two embryos.

After a discussion, we decided to freeze all the fertilised embryos. At the time we felt a bit oh that wasn't the plan.
Honestly, it was the BEST THING EVER!
Nobody had a chance to go back to normal, we had a lovely breather from the treadmill that is IVF (and did holidays and all sorts of fun stuff), then, when we were ready, we came back to start again. Having a FET means they can then focus on stage two more (getting your uterus all ace for the incoming embryos), rather than this mad swap from stimming to transfer that you get with a fresh cycle. inMy experience, you feel better and your body is better prepared for the embryos. Plus the stats are equally good (some think better) for frozen compared to fresh.
It all worked and we are now incubating a tiny human. Plus we have a bunch of other frozen embryos because they collected so many.

We are obviously shaped and biased by our own experiences, but ending up with a FET the second time around was the best thing to happen in the ivf/ICSI process.

Good luck with it all! x

Thanks I know I need to keep a level head, and do whatever is best, we have been lucky enough to get funding on the NHS, but that unfortunatly meant waiting lists, so we have pretty much finished our bucket list in preparation for pregnancy (stupid I know) so no pregnancy, or even shot at pregnancy is gonna feel like an anticlimax, oh well al least I may be able to drink at Christmas 🥂

Thing is, you don't know if you will get OHSS at all now. I didn't the first cycle. Was on a marginally smaller stim drug dose. They got 1/3 of the eggs and only a couple fertilised and they weren't very good.

The second time I was so chuffed to get so many, I didn't care about having to freeze.

It's so hard, but without a crystal ball, you have no idea how your body will react from one situation to the next. You might get a great response and get OHSS and need a FET. But you wait two months and then you get a BFP. Or a great response and not get OHSS/be considered at risk and proceed and then it doesn't implant and you get a BFN. Or get minimal response because they proceed cautiously for fear of causing OHSS and get a BFN.

One of the trickiest parts of IVF is the mental stuff. So many hoops to jump through. So much waiting. All the work you put in with scans and travelling and bloods and jabs, for the chance it might work. Then accepting it didn't but doing it all over again anyway for another chance. It's bloody tough. You really have to look after yourself and each other and try to carry on with normal life as much as possible. As well as being able to go with the flow and take all the expectations and pressures off yourself. Easier said than done, especially when you wait for so long to get to this point with NHS (I know we're the lucky ones though to get funded but it is still a loooong wait) and you're like right we're here, let's go. And actually it turns out there's a bunch more waiting. And seeing. And waiting. And your brain pops!

I wish you all the best with it!

Thanks ruby! It’s so nice for someone to write down exactly how I feel, so I don’t feel
like I’m going crazy, or if I am, it’s normal
to do so! I don’t know anyone anyone who’s had IVF so I feel very loanly sometimes, like no one gets it, my work is over 30 mins away from the hospital, we are about 10 appointments in, and a surgery, I go for my scratch tomorrow so at least 8 appointments I recon, I had no idea how life consuming it would become. Thank you so much for support, really does mean the world xx

Oh and congratulations on your tiny human 👶🏼 Xx

Penguin, you mentioned only 2 fertilised, Can I ask why? I had my scratch today and the consultant was very negative and said even though I could release a lot of eggs only a few could fertilise, I didn’t ask why, now I’m home I’m scared x

I'm afraid I don't know yet Pug. My EC was only last Monday and I haven't seen the consultant since then so I am left wondering what was wrong too.

I think anyone with PCO/PCOS who develops a lot of follicles will always have a higher proportion that are immature or poor quality - it seems to be very common when you read about it. I think my 2 out of 20 is at the extreme end though, so don't worry too much, most high responders will still get a decent amount of embryos despite the higher drop-off rate. (When you produce 20 eggs you can easily afford to lose 50% of them on day 1. Not so good if you've only got 2 or 3)

Your consultant might have just been preparing you for this?

Thanks penguin, so sorry to hear about your two, they aren’t kidding when the day ivf is a emotional rollercoaster! Iv got my fingers crossed that one of yours stick xx

Some eggs won't fertilise, some won't divide properly, some will arrest a day, 2 or 5 days later. Some embryos won't take, 25-40% will result in a chemical or a miscarriage. So I think the consultant is managing your expectations so you're realistic about it.

Mine own infertility is due to an auto-immune thing which means nothing would fertilise naturally or even with IVF so we needed ICSI to overcome it as well as MFI. There's a lot of different reasons why things might not go the way you'd wish.

Hi Pugmum,

I have PCOS and was terrified of getting OHSS. I didn’t get it after EC (though there were warning signs... clinic wasn’t too worried at the time) but did get it along with a BFP. It honestly makes the BFP a bit miserable, because it’s not fun. I am
now managing OHSS, which thankfully seems to have stopped getting worse, along with the worst nausea and vomiting and acid reflux, the latter caused because there is so much fluid in my abdomen my stomach is all squished. I was really unlucky though. But I just want to say that if I could have had the BFP after a frozen transfer I think it would have physically been a lot easier, so despite the want to get on with it (I totally get that too!) it can be a blessing to wait as you are physically in a much better place. As JoJo said, some clinics actually think it increases chance of success, too... I can see why. The cocktail of drugs I take to manage the OHSS can’t be the best thing for the embryo!

Penguin I had a similar experience - 24 eggs, two made it to 5 days, one is my BFP and the other on ice. We were totally unprepared for such a high attrition rate but since googling I think it is quite common for PCOS ladies. Something to do with high levels of androgens in the blood... My clinic said it was bad luck, but Google Clinic seemed more informative!!

I have my fingers crossed for you all!!

Jojo, I’m sorry I must sound like a brat, I’m trying to manage my expectations and I realise I’m the scheme of things we are so lucky. I guess I just had no idea how difficult it would be, my hospital are amazing but seem to drip feed info so it feels like a new blow every time. I’m at the age now when all my friends are pregnant, and all seem to take within 6 weeks of coming off the pill, I was nieve to think ivf was “simple” I knew the odds were 30-40% but i had no idea there was such a variety that could go wrong! Sorry to hear about your complications fingers crossed your ICSI works for you x

Dinks, thanks the consultant told a said I had a less than 5% chance of a fresh transfer this round as he was very incerened a bfp would make me OSHH, I’m getting my head round it now, it doesn’t sound as if you are having too much fun! Hope you feel better soon and good luck with your little one xx

*today said

I think what the consultant says makes sense and it’s good to prepare yourself mentally for a freeze-all. One step at a time and all that.
And I’m preggers too following a frozen transfer 5 weeks ago but obviously not getting too excited until I get through to the second trimester and all is well.
The national average for live birth per embryo transfer is 27% so it’s good to be realistic. Sorry if I bang on about that too much but we’ve been doing counselling for ages and it’s been much easier to cope by celebrating every little success along the way (like getting the hang of injections or having a good number of eggs fertilise) while also knowing that nothing can be taken for granted.

I had a freeze all due to OHSS. It was devastating at the time, they had approved me for a day 5 transfer and on the transfer table they scanned me 'just to double check' and found my internal organs floating around in fluid... They cancelled the transfer and froze the embryos and I went back to the ward howling. It did feel like a real blow so I know what you mean. I just had to tell myself that it would put the embryo in jeopardy to transfer it when I was in that condition and I couldn't do that.

I recovered from the OHSS and realised how shitty it had made me feel. I spent two months getting strong and healthy and then had a FET which seemed so straightforward compared to the fresh cycle. It was successful and I've since had another FET.

Moral of the story - it is a blow but it is not the end of the journey, miles from it. Good luck!

Dunzo, thanks for your story, it’s nice to know it’s a normal reaction, I’m just hoping I get a decent number now, congrats on your BFP! Can you tell me what was involved with the frozen cycle? I read it was quite involved?

For me the FET involved an injection (in the bottom!) plus oral drugs for I think 5 or so weeks then continuing oral drugs, starting pessaries and having the transfer 5 days later. Kept going with the oral drugs and pessaries until 49 days post transfer. Had two scans in the weeks/days before the transfer and then one 3 weeks after.

To be honest both times it was a breeze in comparison to the fresh cycle. The drugs are not exactly fun but they are not that bad and there is a bit more leeway about things. For example the first day they had suggested for transfer was a Tuesday but I work on a Tuesday so it was changed to the Thursday. I just adjusted when I took the pessaries. It's a much less painful process, only one injection right at the start and none of the sedation or anything like you have for egg collection. I didn't even tell work second time round as the time commitments are so much less demanding. It will depend on what protocol you are on though, each clinic and patient is different.

We are incredibly lucky, we had 4 embryos frozen from our first cycle and we've had two successful FETs so far. It's a dream come true really.