Missed miscarriage still positive pregnancy test

[strawberryraindrops]

Please can someone help, I'm feeling really stressed.

I found out on 4th July at scan that it was looking like I'd had a miscarriage. Went back for 2nd scan on Thursday 13th July which confirmed missed miscarriage, they also said it would have been identical twins (not sure that is actually relevant). I chose to go for the medical management and to go home so I went back on Friday 14th for these tablets and the hospital gave me 2 pregnancy tests and said to do them 3 weeks after the heaviest bleeding (which ended up being on that day, 14th July).

In case it is relevant I was bleeding very heavily on that same day, with lots of large clots then it eased off by the next morning (it was horrific and I felt very ill during the worst of it but thought that must be it). I have not stopped bleeding since that Friday 14th, so 2 weeks and 6 days. It is not too heavy as such, but can be worse in the morning than it is in the evening with some small clots every now and then.

I'm really stressed though because I did one of the tests today and it was still positive, I will do the 2nd one they gave me tomorrow and I still have some left over of my own which I can do too but I am terrified of what this means and what will happen next. What will they do? Will I have to have surgery? I can't find much about it online but I just feel so stressed and anxious, I was feeling so fed up about still bleeding but was so certain it would all be over as of tomorrow and that I could try to move on a bit more. I feel like it's really put me in a bad place thinking about this possibly continuing for who knows how much longer and I feel really frightened.

Any advice at all anyone?

I would contact EPAU and tell them your period of bleeding and also still testing positive. They should send you for blood tests to check your HCG and also conduct another ultrasound. I also had a missed miscarriage in June and unfortunately had retained tissue so they might either give you another dose of tablets or refer you for surgery. X

@Longtobe2023 thank you, have contacted the clinic at the hospital this morning just waiting for a call back

@strawberryraindrops how did you get on? X

@Longtobe2023 I eventually managed to get through to the clinic at the hospital on Friday afternoon. They said it's likely to be retained tissue and have booked me in for another scan tomorrow afternoon then will see what needs to be done from there.

It's been another couple of very long days. I understand they can't tell me what to expect next until they see what exactly is the issue, but all this waiting is really tough. Not that I ever thought that much about it, but I never expected it to be such a long and drawn out process.

Thank you so much for checking in, I hope you're doing ok? x

@strawberryraindrops I was exactly the same as you, I was so uneducated thinking you had a miscarriage and that was it. I’m currently on week 8 since finding out! I’ve had surgery and had retained product, multiple scans, EPAU didn’t want to know because in their words “your not pregnant so it’s not our problem”. Paid £150 for a private scan last week and still in the same boat, then ended up in A&E Friday and was given the medical treatment (still bleeding now and passed no clots) but I’m very happy to see a letter through the post today saying I have a scan booked at the hospital I had my surgery for the 20th so fingers crossed I get some answers!

keep me posted how you get on x

Hi @strawberryraindrops I'm sorry, this must be so difficult and exhausting. I was in a similar situation with my miscarriage and still bleeding and testing positive and it turned out I was pregnant again. Is that at all possible in your case? If so and you want the pregnancy please make sure you have an ultrasound before taking any further tablets etc just in case. Sending you huge hugs. ❤️

@Longtobe2023 Gosh I'm so sorry you've been through all of that, it sounds horrific. I really hope you get it all sorted soon, I'm keeping my fingers crossed for you.
The hospital I've been going to have been brilliant so far and the people are so kind, but we have also been looking into the option of private care because they seem to be so busy which means waiting longer for appointments. But we're going to see how the scan goes tomorrow first.

Let me know how you get on too xx

@PaperDoves Thank you but no, there is no possibility it's a new pregnancy (I do have a scan tomorrow anyway). They very briefly mentioned this a while ago so it was something I was aware of.

@strawberryraindrops I’m so sorry for your losses, and that you’re now in this horrible position. It was a shock to me, too, how long a MC could actually take. I had retained products after medical management and had surgery. (Twice in fact…that’s another story.) The surgery was much more straightforward than I’d feared. There are plenty of people on here who can share positive experiences of surgery if you need them, and who can show you you will come out the other side of this. Good luck to you for next steps.

@Longtobe2023 That is absolutely awful how EPAU treated you. There seems to be such a discrepancy in approaches across different hospitals, and it’s not ok. I’m so sorry.

Morning, I hope everyone is doing ok. I had a scan two weeks ago now which confirmed there wasn't any retained product. Two doctors did the scan, which took a long time but they did lots of measurements and were happy it had all gone.

They said I could keep bleeding for a couple of weeks but two weeks later I am still bleeding, which is quite horrible in itself so was considering calling the hospital for some advice again, and to see how much longer is 'normal'. But yesterday we were out at our local pub for drinks to celebrate my SIL's birthday today and I had this very sudden and very heavy gush of blood. It was literally dripping down my legs before I made it to the loos. I had soaked through a pad, knickers, shorts and I had blood on my dress & sandals - my legs were covered in blood too. I was stuck in the toilets for ages, was hoping someone would come into the ladies (2 cubicles) so I could ask them to get my husband, but no one did so I eventually heard the hand dryer going in the men's toilets which was just opposite the ladies, so I stuck my head out the door and asked a completely strange man to get a member of staff (my SIL owns the pub, so we know all the staff and we only live 2 minutes away). The manager then got my husband who ran home to get me clothes, pads, and wipes and the manager also got my SIL who sat with me and helped me wipe the blood that had dried with some napkins and warm water.

The bleeding had slowed back to a more normal period type thing after a couple of mins but I was literally sweating it was so hot in the loos, and I was shaking and crying it was very scary and just a really horrible and unexpected experience.

I've called the clinic again this morning for some advice, the lady I spoke to said she wasn't a clinician but would get one to call me back at some point today, but that she thinks it sounded fairly normal.

I just feel so frustrated, stressed, anxious and drained. I am really struggling to cope with the bleeding - it's not painful, or very heavy apart from yesterday evening, but I think mentally I'm finding it really tough now as it's been non stop for 6 weeks now. I feel like Doctors, nurses and midwives kept saying it would stop in the next couple of weeks but honestly I just really need it to stop now. I don't trust my body, I feel so out of sorts and scared all the time. I literally feel like my whole body is tense all the time and like I'm not even breathing properly.

Hi @strawberryraindrops I’m so sorry you’re still suffering with all this. Your post takes me back to an experience I had about 6 weeks ago - down to the sudden gush while I was out and being stuck in the toilets waiting for help! It’s a shock, and scary, and I know exactly what you mean about feeling tense all the time. You WILL get through this - I don’t feel like that any more. But it’s horrible while you’re in it.

For me it was retained products. It must have been missed on a scan a month before - whether because of the time of my cycle, or because of the skill of the medics scanning I don’t know. Have you done a pregnancy test recently? Not that that’s conclusive, but if it’s positive it’s something to tell EPU. I was told twice that these gushes were my period coming back, but I knew it wasn’t normal, and in the end I was proved right. It may not be this for you, but if it goes on I’d encourage you to try for another scan. Protracted blood loss isn’t something to be messed with, either.

Keep us posted. Sending strength xx

@Oxalis00 thank you for responding again and for your kindness and support. I don't know anyone 'in real life' that has experienced anything even remotely similar to this, so it's a huge comfort to feel less alone. My husband, Mum and SIL have all been incredible and so supportive, and they try to understand what I'm explaining but sometimes things are difficult to explain and they also say themselves, that they have no real grasp on what I'm dealing with.

I hadn't even thought of the possibility of there still being retained tissue, you sort of just fully trust what the doctors are saying as I have no idea what's going on! I have also been having a few clots in the last week ish so maybe it is a possibility. I forgot to mention the clots to the lady I spoke to earlier so will tell them when they call me back.

I haven't done a pregnancy test in nearly 3 weeks, the last one had quite a faint line so they said at the scan it was a good sign, and that I wouldn't need to do another, but it probably would be a good idea to now, will do one when I home from work.

It's very overwhelming so tricky to think clearly at the moment. I think because I keep expecting all of this to end, then something else happens, it is scary and really upsetting.

If you don't mind me asking, how long did it take for your bleeding to stop?

I found a real comfort to read a few similar stories online, too - it does seem protracted bleeding/retained products is unusual, and until my own experience I thought a miscarriage was something that happened as a one-off event, not something that could take months. I’ve learnt a lot! As have friends, family and my boss…

My story is I had medical management at the end of April, retained products found late May and a D&C on 1st June, but I kept bleeding (and had an infection) then further retained products which were missed mid-June (when I went to A&E with gushing and clots) and found mid-July (when I went back to A&E via my GP). I had a hysteroscopy at that point, and bleeding stopped completely. I then had a very light period 2 weeks later, and am now onto my second and more normal period which is weirdly encouraging. From what I’ve read bleeding after miscarriage can last a while, normally up to 3 weeks but longer for some women, but if it gets heavier again it should be checked out.

If you don’t get much help from EPU see your GP. They might offer medication to stop bleeding, and/or get you into gynae through another route.

You will come out the other side of all this. I know it’s hard to believe right now though.

@strawberryraindrops how are you feeling? I only just saw your update -- that sounds awful and that level of bleeding doesn't sound at all normal, I wouldn't think! (Not a doctor obviously.) I hope you're okay now and have got to the bottom of what's going on.

Hi @PaperDoves thank you for checking in. You're right in that the bleeding was not normal, and the pregnancy tests were also still positive so I had to go back to hospital Friday morning. They thought it was possible there was a really small amount of retained tissue that might not have been picked up on the scan I had about 4 weeks ago now, and this was likely causing an infection (Endometritis). I was given antibiotics to take for the week which they were really hopeful would clear out any infection or tissue.

But I'm feeling pretty crappy to be honest. I am still bleeding, which will be 7 weeks tomorrow (although I haven't had anymore of those gushing episodes since early hours Fri last week), my head feels fuzzy, I have had some pain yesterday and today and I have been feeling really quite nauseous today. They did say nausea was a side effect of the antibiotics, but I also just feel like as I'm still bleeding they probably haven't worked - that does just seem to be how everything keeps going for me, dragging on and never ending. But I'm going to do another test when I get home from work, then if still positive I will try to get booked in with the hospital for first thing in the morning, if negative I need to let them know anyway but I will also ask them when the bleeding is expected to stop, I really need a finish line for it now.

I have obviously felt very sad throughout this whole thing, it has been heartbreaking but today is the first time I have felt really down and my mindset is very negative. I'm exhausted and drained - every time before I've been positive in my mentality but I think I'm now worn down. It also maybe doesn't help that 4th July was my original scan, so it's nearly 2 months ago now that this all started.

Thank you @Oxalis00 it does help to hear other people's stories. And I'm sorry you had to go through all of that, it sounds tough but I hope you have managed to make a full recovery now. I also thought miscarriage was a one off event, it's been shocking to find out it's not! I have been at The Rosie in Addenbrookes, they've been amazing and are possibly the nicest and kindest people I've ever met but will bear that in mind re the GP.

I’m so sorry you’re still dealing with all of this @strawberryraindrops - it’s mad that a MC can take so long. I’m no expert, only going on my own experience, but antibiotics didn’t clear my RPOC and I’m not sure why they would… There may still be RPOC in there that need help to come out. Have you talked about another scan? Or even hysteroscopy?

I have a hunch that my gushing bleeding (mid June and mid July) coincided with ovulation, and that something about the hormonal shift prompted my body to try to clear out. Who knows, but I just offer the observation in case it’s useful to you.

@Oxalis00 I don't know either, it's all a bit of a minefield but I had the same thought about maybe the gushing was my body trying to get rid of anything left.

At the last appointment the Doctors said they may need to do a further scan and tests if I still have a positive pregnancy test and see where we go from there, they did a speculum examination on Friday too. I feel so overwhelmed and confused by all of this!

@strawberryraindrops oh gosh, that sounds so horrendous, I'm not surprised you're exhausted and feeling down about it all. I really hope it's sorted soon, definitely sounds to me like something more is going on. Huge, huge hugs! Please let us know how it goes xx

@strawberryraindrops hey lovely, how did you get on? I realise this is a thread from last year. I'm in the same boat and it's been two months since my MMC and I'm still bleeding (light brown spotting) and still testing positive, although it is a bit lighter compared to the week before. It was an IVF pregnancy and my clinic (private) are pushing me to contact the the EPU and the EPU are very much dragging their heels. DH and I are fed up and at our wits end now.

Hi @VolvoFan I'm so sorry you're going through this, it all feels like a blur now and I can't believe it was 6 months ago already.

Very long story short, I finally had a negative pregnancy test after the gushing and antibiotics but the bleeding didn't stop so the GP gave me medication to try to stop it (I can't remember what it was called) for 4 days but this also didn't work, so I went back on the contraceptive pill but the bleeding didn't stop while I was taking it. I was then referred to a different hospital to the one I originally visited and it was horrible and complicated I had to constantly go over everything with them as they didn't have any of my notes, so I ended up calling the first hospital directly and cried to them about it all, they booked me in for another exam eventually.

I had to wait 5 hours when I went back for this appointment as they had some sort of emergency, it was a nightmare and I cried a lot that day in the waiting room. They did another speculum exam, couldn't see anything 'unusual' so gave me a stronger medication which did finally help and stopped the bleeding - if it helps they were talking about using a camera to do further investigations if it hadn't stopped.

I did then have a blood test back at my GP which confirmed I am anaemic and have been on iron tablets since.

It was just over 11 weeks bleeding in total (non stop) and my periods still aren't totally back to normal, they have been very irregular since which I believe is normal (although sucks!!!). Physically I finally do feel better and have been eating healthy and exercising again which is also helping. Emotionally I have been really down in the last couple of weeks, probably because the due date would have been the 15th of this month so I feel sad and quite overwhelmed to be honest.

I have no idea if this is 'normal' or something to be aware of, but my first period after all of this was horrific, very painful, I was very dizzy, nauseous and just overall unwell, it was stressful.

Sending you lots of hugs and thinking of you, I know how hard it can be.

@strawberryraindrops thank you for replying, although I'm ever so sorry for what you went through and are still going through. I never knew anything about RPOC or that miscarriages could drag out like this 😩It's so cruel and heartbreaking. My EPU rang me about an hour ago and told me my fertility clinic is panicking me! I've been told to test again in another week and to contact the EPU again if it's still positive and if so, to go from there. We have no living children and we've been trying to for the last two years. I turned 36 a couple of months ago and am aware chances are decreasing. It's all so rubbish. Big hugs to you, too xx