Sensitive: is ectopic 'vanishingly rare' with IVF?

[MrsOrangejuice]

Thank you to everyone who has been so kind with their advice and checking in. I spent a long time at the EPU today with a pretty confusing outcome - the nurse who scanned me said there was a gestational sac but nothing else, and that my right ovary that she could see looked fine, no cysts etc. Definitely no yolk sac or embryo. At my scan yesterday they said there was just a mass of fluid and it wasn't a gestational sac, and my right ovary they could see was very swollen and had at least one cyst (I saw this on the ultrasound so I know this is correct). I don't understand how less than 24hrs can have such different findings. The doctor said he was 99% certain it wasn't ectopic as they hadn't seen a mass on the tubes and that anyway ectopics are 'vanishingly rare' with IVF. This confused me as I thought it was actually higher risk - anyone else been told this or experienced otherwise? My HCG has now gone up to over 2,000. I've been left in a sort of limbo where they can't find a pregnancy but won't do anything for a week on the off chance it suddenly becomes viable (basically impossible but they said they can't do anything unless there is a week of no change in between). He also said taking progesterone won't make any difference to the outcome at this point (won't prolong an ectopic if there is one and won't save a non viable) so left it up to me to carry on or accept it's not viable, stop and it may go on its own. Maybe I do just have to wait it out. This is such a horrible feeling and I have so many doubts right now x

[Purpledoggy]

Oh love, how confusing. I guess it’s not over til it’s over? I was told ectopics are more common with IVF as well and it’s corroborated by the NHS nhs.uk/conditions/ivf/risks/ It is going to be a rough week’s wait for you but there’s still hope at this point xx

[MrsOrangejuice in reply to Purpledoggy]

Thank you. I think what he was saying is that based on the HCG only going up about 10% every couple of days and from what they've seen, there's no chance it's viable, but they can't risk surgery until they've waited the requisite week. By now and with the hcg being over 2,000 there should be something. So least worst option is that it's an empty sac and my body hasn't realised yet and it either will do or they remove it with surgery. I'm just concerned at how heavily he was basing his confidence it wasn't ectopic on his belief it's so rare with IVF whereas the experience I've heard from others on here suggest otherwise. x

[Purpledoggy in reply to MrsOrangejuice]

Oh I understand now 😞 I’m so sorry this is happening to you. Thinking of you xx

[Annjali]

hello there, I’m really sorry to hear you are going through this.

One of my IVF rounds ended up in ectopic, and like yourself i didn’t realise this could happen let alone at a higher chance.

You don’t hear of it much but it does actually happen. In my case it was unlocated too (PUL) and my HCG levels continued to go up.

I am happy to answer any questions privately, but I personally would push for more scans maybe at a specialised hospital even because I don’t think a normal EPU knows enough about IVf and ectopics.

I hope this helps.

[MrsOrangejuice in reply to Annjali]

Thanks Anjali - sorry this happened to you. I will pm you, thank you x

[Esb27]

Oh I'm so sorry you are in limbo MrsOrangeJuice that's really not nice or fair. Sending you lots of hugs right now and praying that they see something next week.

I was always told that the chance of ectopic is very low with IVF. I was referred to IVF because I had two ectopics naturally. As it's a higher risk once you have one to have another my chances of yet another ectopic naturally was 25% whereas with IVF it drops down to 2%. It's hard to say it won't happen to you as yes they are rare but there is still a chance.

I think still keep holding onto hope but also preparing yourself for the worst just in case. Even if it is an ectopic, chances are they will catch it super early so you won't have to remove your tube. Good luck and keep us posted if you can x

[MrsOrangejuice in reply to Esb27]

Thank you. Yes, that's what the doctor seemed to be saying, that the embryo would have to 'move' back into the tubes which was very unlikely. But all the online advice was that it's higher risk and I'm not sure why. I'm sorry you've been through two ectopics - i'm reassured by what my doctor said but even the chance of something that could be so dangerous is difficult to get out of your mind and I am noticing and worrying about every twinge. I think I've made my peace it's not viable and as soon as I can get it confirmed would just like to move on x

[Esb27 in reply to MrsOrangejuice]

I can imagine, the waiting is the worst part. That's good you have already prepared yourself. When next week will you have to go back?x

[MrsOrangejuice in reply to Esb27]

Yep and I've stopped the progesterone so pretty much all the symptoms (bar the most insane headaches) have gone, so I don't 'feel' pregnant now. Have to go back on Monday then I'm not entirely sure how quickly things move from there. I'd like to just get this over with and my doctor seemed pretty in favour of surgery rather than more waiting or having the injection, but I just don't know...

[Esb27 in reply to MrsOrangejuice]

Ahh okay, well good luck for Monday!! Either way, you got this I'm sure (just make sure you allow yourself to feel what you feel. In my experience bottling it up doesn't help in the long run. All of your feelings are valid, even the negative ones) x

[Aprajita229]

In pregnancies there is always a chance. I was told an empty gestational sac for 4 times in all 4 pregnancy. First 3 was not viable after a wait of 1 week. For 4th time i was again sure that it isn't viable and i moaned and after 1 week doctor found heart beat. That little sounds are now my life running and screaming all over house... By god's grace she is 1 now. So wait not always results in negativity. All the best...

[MrsOrangejuice in reply to Aprajita229]

I'm sorry you went through this 4 times - on my earlier two I didn't get to the first scan so I was spared seeing anything and the extra hope. May I ask, on the one where they eventually found a heartbeat do you know how many weeks you were? The thing is I'm 6.5 weeks and my HCG is high enough to suggest there should be something there rather than just the sac, plus the hcg levels have not been doubling. I'm so glad it worked out for you x

[Rhubarb5]

I am so sorry you are going through all this. Not knowing/having complications can be really distressing. There is an increased risk of ectopics with IVF. I've done 5 IVF attempts and 2 resulted in ectopic. They can also be difficult to diagnose. My 2nd one was obvious but my 1st one took 3 weeks and 4 different consultants to diagnose. Are they seeing you regularly for bloods and scans? I'm very lucky I have an excellent EPU who saw me every 2 days even while they didn't know what was going on but I know not all EPUs are like that. Really hope you get some answers soon. xx

[MrsOrangejuice in reply to Rhubarb5]

Thank you and sorry you've had two - you must be incredibly strong as I'm struggling with just the thought of it hanging over me. They're not seeing me what I would call regularly - it was difficult enough to get them to see me at all. They've said I have to wait a week for a follow-up scan and bloods as the doctor is convinced it isn't ectopic, but this seemed heavily based on his view that it's so rare with IVF, hence my worry. They just said go back in if I get any symptoms. I don't really have any so a bit stuck. Did another CBD and it's still saying 2-3 so assuming the HCG hasn't suddenly skyrocketed...

[Snoopydraws23]

Sorry you are going through this. 2 of my 5 embryo transfers were ectopic pregnancies. I was told that IVF increases the risk. x

[MrsOrangejuice in reply to Snoopydraws23]

Thank you for replying and I'm really sorry to hear that. x

[DG2022]

sorry this is happening to you. You mention you had hcg done - how many? I’m surprised they are making you wait a week if they are unable to locate the pregnancy and the numbers suggest of ectopic. It took a top consultant to find my ectopic. Who did your scan at EPU? I would be calling tomorrow and asking for a re scan. After my ectopic I was told not to try naturally again as risk is higher. However at an appointment with miscarriage specialist on Monday he said that was absolute rubbish…and that there is an increased risk with ivf (he did not explain why?!!)xx

[MrsOrangejuice]

Thank you. I had two hcgs done very early on and they were sort of but not quite doubling - they put it down to a slow starter. Then two more last week 48hrs apart - 1st one showed it to be on track then the second had only gone up 10 over two days%. Had another on Monday and again showing only around a 15% two day av increase. Took your advice and I'm back in the EPU as I'm feeling pretty unwell and they still can't find anything definitive or work out what's going on. The waiting and having this hanging over me is the worst. x