Repeated ERPC (same pregnancy) - experience

[Lottylou2022]

Hi everyone. I haven't posted here before but I really need someone to talk to. On 9 June this year we went for our 12 week scan (first pregnancy at 38) to be told there was no heartbeat, baby had stopped growing at 11 weeks. I went back on 13 June to have an ERPC. After a month of bleeding and still getting positive pregnancy tests I had to have a second ERPC on 12 July as there was about 1cm of retained tissue let behind after the first ERPC. I was assured everything would be removed this time, and that the bleeding would be watery and minimal, which it was for a couple of days after. However, this morning a week after the procedure I have started bleeding again and it's moderately heavy (like a period). Has anyone needed to have this procedure done twice and is this bleeding normal? It's surely too early for my period. I am just so sick of bleeding at this point. And I just want to be able to start trying again but obviously can't until this is over. Any thoughts would be appreciated.

Hi @Lottylou2022 firstly I'm so so sorry you're going through this. It's awful. This happened to me recently, although it was discovered earlier at 7wks. Im also 38 and it would have been my second pregnancy. I also had dreadful pregnancy nausea despite it being a non-viable pregnancy. So I had the tablets treatment (horrendous, didn't fully work) still getting positive tests after 3 weeks, they did a scan and said there was still tissue present. So had erpc. Still felt a little sick and had faint positive tests. Another scan showed tissue still present Then had to have a second erpc and after that one there was STILL 1.3cm left! Which they said would pass naturally eventually and that they wouldn't advise a third erpc as the womb lining is so delicate. So after that I had a bit of bleeding and then one evening some really huge gushes which were quite frightening but it stopped after about 5 mins. It was only then that my tests were properly negative and a follow up scan showed all tissue was gone.
So your bleeding might be because it's your period, or it could be a tiny bit of tissue still left. The only way to know is a scan, so keep pushing them until they can see that it's all gone. I was also reassured that everything would be gone after the first and the second erpc, but it wasn't the case. I then had to keep bugging them when I felt unwell for follow up scans, only to find my instincts were right and that there was still tissue there. I actually complained to the hospital and had a follow up with the consultant, I asked why they kept saying each erpc would work when it didn't fully .. they just said it's very very rare for it not to work so they can usually offer reassurance that it will work. Not helpful for the few of us that get caught in this situation though!
Are your tests negative now?

Thanks for replying and I'm sorry for your experiences as well. They told me they had never known anyone needing to have this done a third time (a second time happens in about 10% of ERPCs), and they used a camera this time to ensure everything had been removed. Why they don't do that the first time I will never know. The consultant spoke to me after the op and assured me everything had been removed so I'm really hoping he was correct! I was told to wait three weeks to do another test. I was planning to do one next week as that would be two weeks (which is my understanding of how long it takes for the hormones to drop on average) and a possible ovulation week. I could do one today but if it's positive that might not necessarily mean there is still tissue? It's so depressing doing the tests. I had a dreadful headache all of last week which I thought might have been the drop in hormones. I've had no cramps this time, which I did after the first ERPC. But now with the bleeding back I feel like I'm back to square one again.

Hi @Lottylou2022

I’m sorry to hear what you’re going through, it’s really rubbish. I am 40 and this was my first pregnancy too and had a similar experience, although the baby stopped growing at 6 weeks.
I had medical management and was told there was 12mm left if retained tissue and so had an MVA. I was told there should be less bleeding as there was only a small amount left, and that the bleeding would likely stop after about a week but could be 2 weeks. I bled for 4 weeks. The bleeding almost stopped after 1 week and I thought it was over but then it got then heavier again (more than period), light again then heavier again during this time.
I took a pregnancy test after 1 week (positive although faintline), 2 weeks (still positive but fainter), 3 weeks (still positive and somehow fainter), 4.5 weeks (negative finally!).
EPU refused to scan me at 2 weeks as they said I had to wait 3, and as I was on holiday then I finally had a scan yesterday (4.5 weeks after MVA, and a couple of days after bleeding stopped) and it was all clear.
I phoned multiple times during the 4 weeks to tell EPU I was still bleeding but as long as it wasn’t dangerously heavy or smelly (infection) they did not seem too bothered. The nurse yesterday said I had taken longer than average (clearly!) to stop bleeding.

I found it helpful to see the pregnancy tests were faint positives and getting lighter, although as you say if still positive it still does not necessarily mean retained tissue.

I agree it’s very depressing doing the tests and getting more bleeding. But it could be completely normal unfortunately.

Ive also taken the ovulation tests for the past week but nothing yet. The nurse yesterday told me it could take 2-6 weeks to get a period back which is another long wait, as they say to wait until one period until trying again. However I did query this and she said there is no medical reason for it (since the scan showed I was clear) and it’s just so they can measure dates more easily.

Hope things improve for you

@Natpat81 sorry to hear what you're going through. Yes my understanding is waiting for a period to try again is just so they can date the pregnancy more easily. There is no medical reason to wait. I will be 39 in August (and husband is 45), so time is not on my side. I want to start again as soon as physically possible, as it took us six months to conceive the first time. They told me 4-6 weeks before period would return. I wasn't going to bother waiting to be honest, just until I got a negative pregnancy test and bleeding had finally stopped.

It's just all so rubbish isn't it. I really hoped the second EPRC had done the trick, initial bleeding only lasted a couple of days, had nothing over the weekend and now for it to come back again today is so depressing. I think it's also worse that you can only use pads and not tampons, just makes the whole experience even more unpleasant.

@Lottylou2022 I was also told by the doctor that they had "got everything" after the first erpc. So I went off with a false sense of relief only to still feel really unwell and still have positive tests. They also used the camera for the second one which again, gave me a bit of false reassurance. When I complained they said that even though they use a camera, there is so much blood in there they can't fully see that everything is gone!! I would push them for another scan, rather than waiting in limbo for a negative test. It's a really crap system!
Regarding your headache - I had headaches, tiredness and could hear my heartbeat whooshing in my ears - turned out I had very low iron due to heavy blood loss after the first erpc. So push for a blood test to check iron levels. You've also been bleeding for quite a while and it all contributes to low iron levels!
I know it totally sucks to still be bleeding. And I don't want to worry you but I found the bleeding only fully stopped once all tissue had fully gone. Unless of course it's your period!
I found it was a very long, depressing process and went on far longer than I thought it would because the goalposts just kept moving! BUT you will get through it, and it will resolve itself soon. You're getting near the finish line with it. I agree, having to use pads just makes it all even worse! And I'd say if you're ready, just go for it when you ovulate, if you pick up the date using the sticks then they should be able to date the pregnancy anyway.

Sorry for your loss. It’s so rubbish isn’t it. Did you need to have a third ERPC or did it eventually come away itself? They did tell me after the second op that the tissue had moved down from when I’d had the scan the previous week, so it was on its way out eventually and therefore was straightforward for them to remove. The bleeding has stopped again now so maybe this morning was a false alarm. But this is what happened last time. I would think it had stopped and then 12 hours later it would come back again.

@Caneloalvarez sorry, just reread your previous post. I’m blaming the heat!

I presume they have ruled out molar/partial molar pregnancy? I had to have ERPC three times to deal with my molar pregnancy many years ago, the third one was emergency surgery because of massive haemorrhaging when the molar tissue started regrowing.

@exexpat no one at the hospital mentioned anything about molar. I only know that’s a thing from googling.

Hope this is the ending of the bleeding for you @Lottylou2022 , fingers crossed

@Natpat81 thank you. I’ve only had mild spotting today so I have everything crossed that’s the end of it (although I kept thinking that last time and it would start again). Going to wait until the weekend and do a test then. How ironic that we pray for negative pregnancy tests 😭

@Lottylou2022 I'm pretty sure my hospital tests the products from all erpc operations as standaed to check for molar pregnancy. So they prob tested yours but it showed no issues. Mine was negative, it was just normal pregnancy tissue. It's something you can ask but I'm sure they would have told you if there was any issues with the products they removed.
You've been through a lot, I'm sure the end is in sight. I'm here if you think of any more questions or just want to chat. Will keep everything crossed for you that the test is negative at the weekend (yes it's mad that we end up praying for that negative test!!) Xx

@Caneloalvarez actually it rings a bell that the first time I went in for surgery the doctor did mention something about it being sent off to the lab, but then the anaesthetist came in to say hello and she got distracted. It’s such a blur it’s hard to take everything in. So yes hopefully they have tested it and it’s all fine. Bleeding has stopped again now (famous last words) so maybe it was just final spotting. Thanks for your words. I think I will feel better when we can finally get the green light to start trying again. At least I will feel like I’m doing something rather than having all these weeks fly by which feels like wasted time.

I have finally today got a negative pregnancy test. I did two a few hours apart to be sure. Whilst it’s upsetting and bittersweet to be pleased about a negative test, I feel extremely relieved it’s finally over. We can now move on and start trying again. In theory I could start ovulating any day and…my husband now has covid 🙄

Oh that's great news @Lottylou2022 it's such a relief to draw a line under it isn't it! I wish you the best of luck in trying again! I'm sorry to hear your husband has covid... Not great timing!! But whatever happens just take some time to look after yourself and rest, hopefully it will happen for you in the next few months. I am yet to start trying again as I found the whole thing so awful but I did have terrible nausea which lasted the whole way through until I got a negative test!! I already have a toddler and it was really hard going looking after her throughout the process of miscarriage/repeated erpcs. Hoping to start trying in the next two/three months but I've just started a new job and want to get settled before the madness begins again lol

@Caneloalvarez I know what you mean, I’m not looking forward to going through all that tracking, waiting, counting days etc etc again. Getting your period and being depressed (the worst time was when we stayed with family for Christmas and my period arrived at 7am Christmas morning before I then had to watch five year old twins ripping open their presents with mummy and daddy. Cheers body).
But…I am 39 in August and my husband is 45 so time is unfortunately not on our side. I feel we have to crack on asap. The last few weeks have felt like such wasted time. Good luck in your new role and fingers crossed we both get good news soon 🤞🏻