I just want to thank everyone for all of their amazing advice and support. Even though I don't post, it's comforting reading comments and stories and makes me feel less alone. I now have a few questions myself (and also feel like I should start giving back!)
I recently had my 3rd transfer (2nd FET after 1 failed fresh and 1 failed frozen transfer) and on an early scan yesterday (6w+2) after passing a large blood clot my private clinic only found an empty gestational sac. My HCG levels are still very high and progressing like everything is normal and so I spent the evening in A&E as my clinic thought it might be an ectopic and have referred me. Despite reading some miracle stories about an embryo appearing at the next scan, I'm pretty sure that's far less likely with IVF dates and this is an anembryonic pregnancy or blighted ovum. Which is all pretty devastating.
I have to head to the EPU for a further scan and tests (they are far less concerned than the clinic about it being ectopic since there is a sac) but I was wondering whether anyone been in a similar situation. And, if so:
(1) How long did it take for the NHS to arrange a D&C? I'm expecting I will be told to have another scan next week to confirm the empty sac but I don't want to wait much longer to get this over with.
(2) Are there any specific follow up tests that I should ask my clinic about or should come next? I'm guessing the ERA is no longer relevant (yay for implanting) but would immunology be? I know it's a positive step to finally get a BFP, despite this outcome.
Any advice would be so welcome.
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Hoop123
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Hi Lovely. I'm so sorry to hear your news. This must be just devastating for you. It's all just so cruel 💔 Keeping fingers crossed that maybe, just maybe there will be something there on your next scan. But if not, I hope you are cared for properly and promptly. I'm afraid I can't offer advice on your first question, but hopefully others here can. For your second though, as sad as it sounds it might just be awful luck if this one does not progress. If it is your first loss, at least you know, as you say, that you can get pregnant, which is huge xx
Thank you for your kind words, AuroraXen. As hard as things are right now, you're right. Actually getting pregnant is huge and I'm so grateful for that ❤️
I’m sorry you’re going through this. I’ve been through it twice, where gestational sac is there but nothing else. Both through IVF as well. I was told most likely a chromosome issue with embryo and nothing to be done. But don’t be shy in asking for bloods etc.. I will be too, even for peace of mind. I hope this resolves quickly for you. Sending love x
Thanks Fairylights. I can't believe you have had to go through this twice, I'm so so sorry. I can see you have also had some good advice about blood tests to ask for, so I think I'll push for those, too, even for peace of mind. Unfortunately my local EPU won't see me again for 2 weeks now (scan today at 6w+3 confirmed an empty sac but apparently it's their protocol to wait that long) and so I'm waiting to hear back from my clinic about what to do about about my medication in the meantime. I'm hoping it was less drawn out for you! It feels so fruitless and painful to have to wait this out when there is no hope of any change... They originally said I had to wait three weeks but I think my reaction brought it down to two. Painfully, apparently if there was an embryo but no heartbeat then I would be seen in one week.
Mine was fairly drawn out too!! And that was what I found the hardest part so mind yourself and be kind to yourself during this wait. Both times I was nearly 8 weeks by the time they called it a miscarriage. So hard. Plenty of chocolate and nice things during this time! X
Ah so so hard. You're right, I do need to be kind to myself right now and patient. And to keep reminding myself to do that! Thanks for responding, I really appreciate it. X
I am really sorry you have to experience this, as it is not enough to go through this hard rock IVF journey 😤. At your first question I don't have an answer but on you second one I have some advises. As I had 3 chemicals I did quite a lot of tests: hysteroscopy; blood tests for blood clotting disorder like Factor V, coagulation, lupus. You can have bloods done though your GP. I also had more in depth ones like genetic, immunology (NK cells, inflammation of uterine lining) and also MTHFR. We decided to PGS test our embryos just to make sure they are chromosomally normal. All these helped a lot and we been successful on our 4th try. Of course I had ERA test done just like you, which is good if you are planing to have FET done. Take care of yourself and stay strong, I am sending all my positivity to you 🥰❤️
Thank you Ranchu. It's all pretty awful right now, especially as the hospital won't treat me or scan me for another 2 weeks, so I'm a bit lost. But it sounds like you have some excellent advice on further testing. I had a hysteroscopy before this round (which was all clear) but I haven't had any more in depth genetic or immunology tests so I think I will push for these. That's so exciting about your positive 4th try ❤️ and with twins :)! Fingers crossed for our 4th go.
2 more weeks of pure torture, I truly feel sorry for you. If you want to consider a private scan look on Google "window to the womb" they are offering scans at decent prices. Don't go into your 4th transfer until you ruled out few "potential" issues, it will frustrate you more. Also ask your doctor for steroids. I don't have any immune issue but I was anyway on steroids and immunosuppressants. Thanks you for your kind words ☺️ 🥰❤️
Hi Hoop.. I’ve just been through something similar - at the 7 week scan they couldn’t see anything, and were worried it might be an ectopic. I was sent to the EPU, they did a scan and saw something they thought might be an empty sac but couldn’t be sure / couldn’t rule out an ectopic. I had blood tests a couple of days apart to confirm they were falling so it would help rule out an ectopic, they were falling so I had to do another blood test a week later and it came back negative so that was their confirmation rather than doing another scan. My clinic advised me to stop the meds on the day of the 7 week scan itself and I started bleeding the next day. The consultant advised me that even if I did immunology tests at the moment they’re not giving steroids due to COVID but I was also advised it probably failed due to chromosomal issues. It is heartbreaking and I’m sorry you’re having to go through this as well. Wishing you well x
Hi Ki, thank you. I'm so sorry you've had to go through all of this. It's all so hard. I hope things have resolved for you now for this round? Thanks for letting me know your consultant's views on immunology tests. I find it helpful to compare the different approaches! I honestly don't know what my consultant will suggest but I want to be prepped with questions. Also really helpful to know that they told you to stop meds that day and how quickly your body responded. I'm still waiting to hear back from my clinic so will keep going for now. As grim as that feels. x
I went through blighted ovum last year. I believe it is caused by abnormal chromosomes in embryo, not immunology issue. Do make sure your TSH is between 1 and 2 though.
I had 5 miscarriages prior to IVF and 2 of them were confirmed Blighted ovums. The first was found at 7+3 and sac measured 5+6 and I had to do the 2 week wait for another scan then D&C 2 days later. The wait was torture I'm so sorry you're going through this. My 2nd BO was found at 6 weeks and thankfully I miscarried naturally about 3 days later.
I then did IVF and we PGS tested the embryos as BO are thought to be caused by chromosome issues. Out of 9 embryos, 4 were additional or deleted chromosomes and we ended up with 5 chromosomally normal.
We also did sperm DNA fragmentation testing on hubby and found he had high fragmentation which could lead to the chromosome issues so he went on a course of supplements for 3 months prior to us doing ICSI.
My 1st FET failed so we added in immune protocol with steroids and 2nd FET worked am now 22 weeks.
I'm so sorry you had to go through 5 miscarriages (and 2 blighted ovums). I agree, the 2 week wait sounds like absolute torture. I think I'm also scared of what is going to happen if/when I miscarry naturally while I am waiting (my clinic has told me to stop medication now, thank goodness) and what happens if I'm out and about when it does.
Thanks for setting out what your steps were and massive congratulations on your 2nd FET. You must be over the moon after such an incredibly hard time! We have 3 frosties left of pretty low quality (I know grades don't matter so much) so it might be that we should test them if we can. I'm in two minds. Interestingly we didn't do the DNA fragmentation test before ICSI (we are MFI) but I am a bit concerned that may be an issue. He has been on supplements since our fresh round so I think we will get another test anyway to see if that is helping.
My experiences of miscarriages were all fortunately ok. Obviously it’s horrible but I never had it suddenly happen there was always spotting beforehand which was a good warning then the cramps would gradually come on. I would say all were manageable with paracetamol and a hot water bottle. For 3 of them I just wanted to curl up on the sofa until the bleeding stopped (which was about 3 days for me but everyone is different) but the last one I said screw it I want to carry on as normal so we went on a weekend away to the Lake District (our favourite place) and I miscarried there but it was strangely better for me being away from home! I had D&C for first and that was absolutely fine just felt a bit crappy for a couple of days after anaesthetic.
I hope it’s as easy an experience as it can be for you. Take time to grieve for your baby and look after yourself. I had people say oh well at least it’s early etc etc but they don’t realise how hurtful that is. A pregnancy isn’t quantified by how long it lasted - a whole life is planned out and imagined and it’s ok to grieve that just as much as any loss. It took me a while to feel like this but in the end it made me stronger.
If you want to feel less alone I really recommend listening to The Worst Girl Gang Ever podcast and finding them on Instagram it really helped me.
I just wanted to say thank you for this message. It was really comforting.
Take care and congratulations again on your current pregnancy x
I am so sorry you are going through this. The one thing I would say (not to give you false hope) is that 6w 2d is still quite early for a viability scan, my place don't do it to 7+ weeks.
The next steps tend to depend on what happens with the sac. In my experience which was quite unusual the sac kept growing. So I went back 2 weeks later and it had grown but was still empty so they made me go back 10 days later again. The one difference was that was a natural pregnancy so they kept telling me I had to have my dates wrong. Hopefully you won't have that second step. Post the 2 weeks I was offered either MMC or surgery but recommended surgery as my body hadn't realised something was wrong so MMC may not be effective.
I have had a number of MCs now, too many to mention, and had surgical management 4 times now. It was always the best way for me as it was quick and painless and meant I could get on with the mental healing as the physical side of things were done very quickly
We were just told it was bad luck and there was no reason why next pregnancy wouldn't be viable so we weren't recommended any additional tests but again that was actually my first pregnancy years ago so maybe if it had been more recent IVF ones they might have suggested more tests.
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