Retained products, first period or chemical?

[vjb39]

As if losing your baby isn’t enough… here I am 12 weeks later still with a positive test 😩 advice please as I really don’t know how much more of this I can take.

I had a D&C on 18th May for 2.2cm retained products after 2 failed rounds of misoprostrol for a MMC that was discovered 30th March.

Bleeding after D&C was light, took a test 10 days later and got the faintest of squinters which was amazing after seeing clear positives for so long. Bleeding slowed to spotting and I assumed that D&C had done its job and the test having been so faint would be negative any day.

3 weeks after d&c I started AF style cramping and bleeding heavier- called the EPAU and they said it’s likely to be my period, a little bit earlier than expected but as long as it’s not too heavy or painful it can be normal.

This heavier bleeding has now been going on for 12 days! It’s lighter than my normal period, sometimes heavy and red, sometimes lighter and pink and sometimes mucusy (sorry TMI)… also lasting way longer than usual. Anyway I got freaked out that’s it’s not actually my period and did a test (or 4)… all squinters 😭 if it was my period surely I would be testing negative by now?

My HCG was 500ish when I had the D&C so I feel like after nearly 5 weeks it should be at 0? I’m now worried about having retained products again.

Or could it be a chemical? That could account for the faint tests and when I have had a chemical previously I bled for 9 days on and off?

Sorry for the long rant but I’ve been through so much the last 3 months, I was so happy after the D&C because I felt it was all finally over and now there’s all this uncertainty again 😩

Thanks so much for the quick reply @vjb39 it is incredibly reassuring to hear your experience, since it’s so similar to mind. Also lovely to read your optimism! Your surgeon’s explanation makes sense, though I don’t know why they don’t then use a camera the first time around…

It’s great that you’ve almost stopped bleeding and exciting to think of TTC again. I know how you feel with time slipping by so completely understand wanting to get back to it. Good luck to you!

@Oxalis00 I’m still in the same boat with retained tissue and have been told I have to just wait for my period now! I’m due today but something felt off and did a test and there’s a very faint positive line (this is after 3 negative tests baring in mind) so I feel so emotional and haven’t a clue what’s going on in my body! Is it retained tissue causing the slight false positive or is it real…. I guess I have to carry on waiting to see what’s going on! I hope everything goes as well as it can for you and your ordeal will be over x

Wow @Chrissy1208 what a rollercoaster! Fingers crossed for you! Is it likely to be a new pregnancy with your dates DTD do you think? Will you contact EPU to let them know you’ve had a positive test and see if they’ll scan you? Seems weird to leave retained products for a period if they haven’t come out already but I’m sure (hope…) they have their reasons.

I had my hysteroscopy yesterday, 2 more bags of blood and an iron infusion! They’ve said womb is cleared now but I’m reserving judgement after all this drama... Will see what happens in the next month or two before I believe the MC is really over. Still waiting on info about adhesions. Feeling mixed, a bit stronger physically but still quite changeable emotionally.

@Chrissy1208 hopefully you will get your period soon and it will clear anything left out! I was the same with the positives/negatives and it was because my hcg was in the low 20s at that point some tests were picking it up and some weren’t! Have you been bleeding or cramping or anything up til now?

@Oxalis00 glad to hear it went well but it sounds like it’s been completely traumatic for you! It’s awful isn’t it, I was exactly the same. I couldn’t be happy after my hysteroscopy because I felt like something else would happen and I would be back in again! Being told it’s sorted too many times so I couldn’t believe it finally was 🥺 did they say they could see any adhesions when they looked during the procedure?’

Yeah that’s exactly it @vjb39 - hard to believe after all this that it’ll ever be over. It’s so helpful to hear a similar experience from someone else, thank you for sharing and for your support. A second opinion on the previous scan has now said there’s no adhesions, so that’s good I guess, though I still have lingering uncertainty and it does rather reduce my confidence in medical opinions for the future…!

@Oxalis00 well hopefully that person who thought they saw signs of them was just completely wrong and this can finally be over for you! And anyway surely something would have been picked up on the camera during the hysteroscopy if there was anything forming? I emailed the surgeon a list of questions after and one of them was about how the rest of my uterus looked. He rang me back and was really helpful so I feel you are within your rights to ask this if it’s something on your mind!

I feel more confident now my bleeding has stopped, it took around 5 days (then another day with the tiniest bit of spotting) which is so different to my d and c and the misoprostrol so I am happier it’s over! Maybe this will be the same for you?

How are you feeling about TTC again?

Ah @vjb39 that’s so good you had reassurance from a follow-up conversation with the surgeon - I hadn’t even considered emailing questions but it’s a great idea to speak up for yourself and get as much information as possible.

I’m feeling mixed about TTC - was nervous about a second but now feel more determined to get on with it as time is slipping away, which is helpful confirmation in a way! But also want to give my body at least a cycle to reset. I’d like to see a normal period before we try, and give my bloods a chance to bounce back too. I don’t feel physically ready to carry again yet after all this (was pretty poorly with the pregnancy this time) but every body is different. Excited for you though! Do keep us updated :)

@Oxalis00 how are you getting on in the few days after your hysteroscopy?

Thanks for checking in @vjb39 :) I’ve had hardly any bleeding, just slight spotting when I wipe, which is disconcerting tbh! Started to worry I was bleeding internally instead 🤦🏻‍♀️ I think it’ll take a while to feel safe in my own body again. Getting a little bit stronger day by day after the blood loss, so hopefully that will continue - I’m off work next week thankfully so have some more time to rest and process. Wondering about asking doc for some fertility-related tests when I go back in a couple of weeks to get blood count checked - there was new guidance from RCOG recently to recommend investigations after 2 losses in women 35+ and I’ll make the point of how traumatic this one has been. We’ll see. Any news from you?

@Oxalis00 glad to hear you aren’t bleeding as much any more! I know it’s horrible to feel so out of control but i am taking stopping bleeding quickly as a good sign.Means my body knows there is nothing left to expel any more 🤞🏼it’s good that you are off work this week so you can have a chance to rest up properly!

I would definitely ask about tests if it’s something that would make you feel better and give you some peace of mind. Did the surgeon from your hysteroscopy discuss any tissue testing with you?

Not much to report here! My bleeding stopped completely after 6 days (I think) which DH was very happy about 😜 I have been having some ewcm the last few days but don’t know if it means anything or if it’s still my cycle resetting after everything it’s been through the last few months 😫 trying not to think too much about it and just saying to myself it will happen when it’s supposed to!

Haha, trying not to think too much is definitely easier said that done after all this! Sounds like you’re doing really well though, positive and relatively calm. Long may it last! How have you felt DTD, if that’s not too personal to ask?! I’m still nervous about disturbing anything in there 😬 I’m sure that’ll pass with a bit more time though. DH being very patient!

The surgeon didn’t mention anything about tissue testing this time, though I did have stuff from previous D&C sent off to check for molar. Do you know what else they can look for when it’s just retained products?

@Oxalis00 haha exactly! I am so tempted to offer some ovulation tests on Amazon but so far I am staying strong and just trying to go with the flow 😂

To be honest DTD was fine! It was in the back of my mind and I was worried about it starting bleeding again or being painful but it was fine. I was ready for the closeness, feels like it’s been a long time since we have been able to do it properly because of first tri sickness 🤢 then everything that came after! Good that your DH is being understanding and patient though, I guess you can only restart when you are 100% ready.

Oh yes I remember now that you had that done. I had it done post d&c but they wanted to do it again post hysteroscopy. I didn’t ask why but the surgeon said he would make sure he would write to me no matter what the results for some closure which is good. I didn’t hear after the d&c so I assume that it was normal? I know they can test for genetic disorders but I don’t know if that’s possible from RPOC or even if that’s what they will try? 🤷🏽‍♀️ will just wait and see!

Sounds like you had a really understanding surgeon - I was told previously they only let you know if it’s bad news, so you could be waiting up to 8 weeks worrying 😬 My histology results came back in 3 weeks though, so hopefully you’ll hear soon.

Going with the flow sounds like an excellent plan! And great to just enjoy DTD again rather than all the pressure it can become. I know what you mean, feels like an age since before I was pregnant (and MC). Glad you’ve got your body back finally. Enjoy! And keep me posted ;)

@vjb39 still waiting for my results from having my bloods taken for any HCG. But today I woke up and went to the toilet and had a small gush of blood release and have then been very light period all day (with mild cramps) I’m praying this will be the time the retained tissue comes out (now 5 weeks after my SMM) the worst thing Is I still can’t even get my hopes up because I feel like it’s just going to be another hurdle…. MMC, SMM, waiting game, little period and then still retained tissue. Do you think they will finally do something if this is the first time I’ve bled since and still nothing passes? Sorry for the negativity all the time, getting a little down and fed up now x

Any negativity is totally understandable @Chrissy1208 it’s an awful situation. Did they say why they wanted to leave the RPOC for expectant management? Are you due a period now do you think? How long has it been since SMM? I definitely think you could ask EPU for a scan after this bleeding to check everything has gone. And if it hasn’t, push for surgery. (If it comes to that you could ask for a hysteroscopy like @vjb39 and I had, where they use a camera to guide rather than just digging around.)

@Oxalis00 they said I had to wait for a period as it was only 1.5 retained tissue, it’s now been 5 weeks since surgery. The bleeding has completely stopped now and barely even filled a little panty liner throughout the whole day so surely it can’t be a period. Me and my partner did have SI last night so I’m wondering if that has triggered todays bleeding?

id prefer to have the procedure you’ve both had to put my mind at ease knowing it’s all been removed, I honestly thought that’s what they did with the surgical management if I’m honest (didn’t think it was just a wing it type of op otherwise i wouldn’t of wasted my time) x

@Chrissy1208 I think they do sometimes use abdomen ultrasound to guide the D&C but you still don’t want them digging too hard or there’s risk of perforation. I don’t know why they don’t use hysteroscope for the initial procedure. I think retained products are reasonably common though, 1 in 80 if I’m remembering right.

They told me 4-6 weeks for a period so if you haven’t had a proper bleed in another week I would go back and ask for a scan and further options.

So sorry you’re going through this. It’s horrible.

@Oxalis00 when you had your additional scan/management what was your HCG at? I’ve just contacted the EPAU sobbing because I just want it over with and they said my bloods came back lower than 5 so “presume” the tissue is gone. My drs messaged me saying my HCG is at 445? I feel so fobbed off. I was testing negative with retained tissue so now they’ve pretty much just said there’s no more they can do. I might just pay and go private but don’t know where to start :(

That’s strange @Chrissy1208 when were the two blood tests, by EPAU and GP? Would GP be more sympathetic, and worth seeing again?

I don’t know what my HCG was TBH - it’s actually one of the questions I’ve wondered since. My EPU only went off a urine PT for some reason, and I think it must have been false negative (too dilute) when I went in in June, though I was told it was positive when I arrived at A&E last week. If your HCG isn’t showing on a urine PT (a sensitive one, with FMU) then I’d have thought it shouldn’t be enough to stop your periods and maybe the RPOC will come out, or at least won’t cause any more problems. A week could make all the difference - one day this will all be behind you. I know it’s so hard to be stuck in limbo though.

@Chrissy1208 😢 I would just keep pushing for another scan if I were you! If you are bleeding on and off then something is clearly not right!
HCG level doesn’t always reflect retained products… my HCG was 24 two weeks before my hysteroscopy and then 8 two days before but the products were still large enough to take up 2/3 of my uterus!

@vjb39 ive got my bloods again this afternoon and I’ve found a place in Sheffield to pay private to have the full scan on everything fertility related so I’m booking it for Friday morning. Can’t really afford £150 but it will give me peace of mind :) I tell you if it comes back there’s still tissue remaining then I’m going to put a complaint in. I understand they’re understaffed but really what is one more scan to actually confirm what they are (guessing)! I’ve not been on contraception for nearly 4 years and only fell pregnant in April, not that they give a s**t. We know our own bodies x

How is everyone getting on? I had a very small bleed (maybe a spoonful over 3 days) last week so don’t know whether that was a period or not. I did have high ovulation tests 2 weeks before but that was right around when I ended up back in hospital with heavy bleeding so I’m not sure what to make of it. And if it was a period, it definitely wasn’t normal! Which is a bit confusing/worrying both in terms of TTC and general health. So more waiting for me.

@Oxalis00 my can confirmed retained product, still the same size as when it first got checked so EPAU was wrong and just fobbing me off. I ended up in hospital Friday in so much pain and they gave me the pessaries for the medical procedure. I’ve never been in so much pain after those, I nearly passed out on the loo! And still bleeding now. I hope this is the end of it (it’s been 8 weeks of torture) it’s awful isn’t it that we no longer know our bodies! Hopefully you manage to work your ovulation dates out and everything goes smooth! X

Oh @Chrissy1208 what a miserable time you’re having. Have they said what to expect from the medical management? How will you know if it’s been successful? Really hoping this is the end of the process for you. It’s hard in all kinds of ways, physical and emotional, but I’ve found the alienation from your own body really is something else.

@Oxalis00 i honestly don’t think I’ve passed everything yet, it’s just so strange so I can go to bed all night and my pad is completely dry in the morning. I sit on the loo and it just gushes out and it’s still bright red blood. Because it’s been 8 weeks of scans, bloods, surgical management, medical management, paying for my own scans and I just still feel like it’s not over.

im now terrified that the battering my body has endured that something will do wrong where I’ll never conceive again :( I’m going to give it a week and pay for another scan and if there’s still product remaining then I’m going to contact the doctors.

I completely agree with the alienation of our bodies! The stress isn’t good for us either when we’re at our wits end. This sounds awful but I’ve felt the several problems afterwards have nocked me more than the miscarriage itself. X