Miscarriage - bleeding 6 weeks on

[LouieLou007]

Hi all, Newbie here.

I recently had a miscarriage at 15 weeks. I had bleeding on and off for a walk before a scan revealed the baby had died the week before. I waited another week where the bleeding got heavier and then had a natural miscarriage. It's been nearly 4 weeks since the actual miscarriage happened so I've been bleeding for 6 weeks now. TMI but I am really sore and have patches of really sore 'burns' in my groins. I am sure I should not be bleeding this heavily for this long. I did have retained placenta at first but that past two weeks later. I therefore feel I have passed everything and although a pregnancy tests states positive, the number of weeks is reducing.

I am a disabled and require a full time carer but the hospital has stated over the phone that I cannot bring a carer with me, nor can they help me transfer to a bed or undress for a scan. As a result I have not been able to go to the hospital (we had the scan privately as was the only way my carer could come) I phoned my GP today and was told that a miscarriage needs to be dealt with the hospital. They did telephone the hospital to see if they would re considering allowing my carer to come but they still refused. I asked for advice over the phone but the GP said he didn't know enough about it to offer advice. The EPU said they cannot issue advice over the phone to women they have not seen - I think they were annoyed over the private scan.

I am therefore relying on google but TBH it's not providing me with any answers. Has anyone been through something similar and can give me some advice regarding the bleeding and if this is normal? I feel very stuck as there's not much I can do if it's not normal but out of desperation I joined here hoping someone could offer some advice. TIA

So sorry for your loss @LouieLou007 you've been through an awful time.
It sounds very unreasonable on the part of the hospital to refuse to allow someone to accompany you if you have a recognised disability requiring full time care- is your carer your DH/DP? Were the staff saying they were also unable to assist you themselves?
Have you tried speaking to PALS at the hospital to explain your predicament? Ask them for the current Trust policy for those who are disabled and require assistance from a carer. It sounds really poor that you've been left with no follow up care after such a traumatic time. Sorry I can't offer a straightforward solution, but I'm honestly amazed at the hospitals response.

My husband contacted PALS a few weeks ago. Sent all the evidence of me needing a carer etc. Their policy stated a carer was allowed in most circumstances but it was impossible to accommodate an additional person in my case because they can't social distance in the EPU or ultrasound department. Apparently they are working on changing this but that doesn't help me ATM. They also said only ward staff can assist people with dressing and transfers and this doesn't include ultrasound or day units. When it first happened I was blacking out continually as I lost a lot of blood. They refused to allow anyone to help me to the EPU nor would anyone come to the entrance to help me in. They said call an ambulance and they'd admit me to a ward. We did that but the ambulance service were too concerned that I wouldn't get the help I needed there and refused to take me. 🙄 They were very good and stayed for three hours treating me with fluids but that's the only medical assistant I've had and TBH they weren't very knowledgeable about the whole situation.

Oh you poor thing. That is absolutely disgraceful on the part of PALS, they should have arranged a day case admission for you to be investigated- not advised you to call an ambulance. I'm guessing the paramedics thought A&E would just sent you home again.
Call PALS back saying unless this is resolved and a plan made to help you then an email/letter is going to the Chief exec, board of governors and the media if necessary.
COVID policies are not intended to put patients at risk and stop them getting the care they need. If that is happening then the policy is not fit for purpose. They are basically saying they cannot care for disabled women in their department but have no robust alternative and processes set up to care for you. I'm so angry on your behalf- I've been in a similar situation and it is scary to keep bleeding. Can you try GP again also and see if they'll advocate for you? Or another hospital with a larger gynae unit? Do you have contacts at any disability rights associations? (sorry if that phrasing is wrong!). Surely this is bordering on illegal to refuse you care based on their failure to accommodate your disability.

I am so sorry that you are not getting the care that you need. On top of having a miscarriage.

Do you have a social worker who might be able to advocate on your behalf?

Is there any chance they would accept your carer if you both have negative COVID tests?

Is it worth contacting an independent midwife? I wonder if they might be permitted to attend and help...

Can the carer get you into the room, help you into position, then leave the room before the medical staff enter to avoid the problems of not being able to distance?

Just re-reading your post- you had a natural miscarriage at home at 15 weeks gestation? That alone should have needed emergency admission and I'm surprised the private scan place didn't liaise with A&E /EPAU to get you admitted then. They have a duty of care to you at that point. And then no subsequent ultrasound check for retained products? Are you still passing clots or bleeding heavily? Have you contacted the midwife you were booked in under?

I did communicate with the EPU when it first happened after the scan. They gave me the options over the phone but said a natural miscarriage was probably my best option so I opted for that. I think they're just trying to keep admissions down at the moment. A charity called Birth Rights said they're dealing with similar cases everywhere ATM so sadly I'm not alone. They are doing a press release with similar stories and asked me to be part of it but that doesn't help ATM.
I am still bleeding heavily but not passing clots anymore - not since about 10 days ago. My midwife that I booked with said there isn't anything she can do. She tried to get me seen by a different hospital but they said they couldn't because of funding. 🙄 The private scan place won't scan me for retained products unfortunately as it's not in their remit. I keep reading that lots of woman have this bleeding so I'm hopeful it's normal. I was hoping someone might say it was on here.

@ChateauMargaux

I am so sorry that you are not getting the care that you need. On top of having a miscarriage.

Do you have a social worker who might be able to advocate on your behalf?

Is there any chance they would accept your carer if you both have negative COVID tests?

Is it worth contacting an independent midwife? I wonder if they might be permitted to attend and help...

Can the carer get you into the room, help you into position, then leave the room before the medical staff enter to avoid the problems of not being able to distance?

They said they haven't got testing set up yet for day cases - that's the next step so I can attend with a carer once that's set up 🤦‍♀️ My husband and I haven't left the house since the scan weeks ago so no chance of us having it but they won't budge. And my carer offered to stand outside etc but they said it would take too long as hey would have to leave the hospital and wait outside and then come back in. Honestly they seem to be making a huge issue out of everything so hospital for me is not an option. And we don't have a social worker.

My goodness op, after a year they still haven't set up a testing process to screen day case procedures. It sounds like an absolute shambles of a place.
In answer to your question I would say no, bleeding for that long is not normal, even after a late miscarriage. I delivered at 16 weeks (in hospital) and went back after a few weeks as was still bleeding heavily. Ended up I had retained placenta and needed further procedure to remove. Bleeding stopped almost straightaway after that. If there is anything 'left' then you are at risk of infection and you need a proper scan to make sure this doesn't happen.
Have you tried presenting at A&E directly? (i.e not via ambulance). I know it's hard when you're grieving but keep pushing them- this is not ok and I'm surprised your GP is not helping more. Sometimes unfortunately the threat of involving the media is what it takes, but I would escalate to exec first. Again, I'm sorry for your loss

You poor thing. I am so sorry.

I don’t want to worry you but I was a couple of week earlier than you and bits got stuck. I needed surgery, which was not successful.

I bled for three months, until the last bit came away. In the last month the pregnancy tests were negative, but they could still see the flapping bits stuck to my womb on the scans.

Based on my experiences, it sounds like you didn’t pass everything.

I did not have burning pain, that does sound like there may be an infection?

In my borough partners are not permitted either, it is horrible. However, I did have to go to A&E for a separate thing and partners were permitted. Perhaps you could go via A&E?

Another option is you can choose which maternity hospital to use. Is there another one in another city that is more accessible?

@sickofthisyear

My goodness op, after a year they still haven't set up a testing process to screen day case procedures. It sounds like an absolute shambles of a place. In answer to your question I would say no, bleeding for that long is not normal, even after a late miscarriage. I delivered at 16 weeks (in hospital) and went back after a few weeks as was still bleeding heavily. Ended up I had retained placenta and needed further procedure to remove. Bleeding stopped almost straightaway after that. If there is anything 'left' then you are at risk of infection and you need a proper scan to make sure this doesn't happen. Have you tried presenting at A&E directly? (i.e not via ambulance). I know it's hard when you're grieving but keep pushing them- this is not ok and I'm surprised your GP is not helping more. Sometimes unfortunately the threat of involving the media is what it takes, but I would escalate to exec first. Again, I'm sorry for your loss

I'm sorry you've been through this too. We did go to A&E. They triage you in the car here and they told me to drive to the maternity hospital across the road so wasn't helpful 🤦‍♀️ I agree that it's awful that they haven't got things in place a year on. Apparently they aren't the only hospital. I was reading a shocking report on the extra maternal deaths the past year because of the restrictions.

@Tippytaps

You poor thing. I am so sorry.

I don’t want to worry you but I was a couple of week earlier than you and bits got stuck. I needed surgery, which was not successful.

I bled for three months, until the last bit came away. In the last month the pregnancy tests were negative, but they could still see the flapping bits stuck to my womb on the scans.

Based on my experiences, it sounds like you didn’t pass everything.

I did not have burning pain, that does sound like there may be an infection?

In my borough partners are not permitted either, it is horrible. However, I did have to go to A&E for a separate thing and partners were permitted. Perhaps you could go via A&E?

Another option is you can choose which maternity hospital to use. Is there another one in another city that is more accessible?

Sorry you went through similar. It really sucks doesn't it. I did go to a&e a few weeks ago but they triaged me in the car and said drive to the maternity hospital. We did drive there hoping they'd see how ill I was and let my partner bring me in but security said no and wouldn't call anyone to help me to the unit and since is as passing out continual I didn't want to risk passing out in a corridor and being there until someone found me. ☹️ We tried a different hospital but hey said because of the way funding works I had to be seen by the hospital I was booked under.

I do keep reading that it sounds like there's retained products still there but like your story I also keep reading that women eventually pass them. I'm hoping that will happened here. I'm having terrible cramps today so maybe that means something is moving - or maybe it's just wishful thinking.

Im just reading back through your thread and it makes me feel so cross for you!

The steps are contact your local MP, say everything as you have here. Copy in all the pregnancy charities and your GP surgery. I would even consider going to the papers.

I am very concerned for your health. You need to get tough and not accept no (I am sorry you have to get tough when you’re at your most vulnerable).

You are being denied access to healthcare. This is not acceptable.

Failing this. Go to your A&E with your husband or carer and refuse to leave until you have been seen.

My husband has tried getting tough. He's complained to not only PALs but also the chief executive of the hospital. They're saying the restrictions are proportional to the risk of covid and my personal circumstances can't trump the general public's welfare. A birthing charity has put me in touch with a lawyer but he said the best they can do a claim compensation for prolonged suffering but that's not what I'm trying to achieve. A&E won't see me because the maternity hospital is literally opposite and they said they don't have the equipment for scans etc. And you can't actually get into a&e here. You have to phone them when you get there and they come out to your car so I cant forge a sit in unfortunately. I tried my GP again and they said it's an on going issue and doesn't require an emergency telephone appointment so made me one for two weeks. 🤦‍♀️ I just give up. My only option is to hope it sorts itself up. The reason for joining here was I was hoping, maybe naively, that someone might say 'oh that's normal' ☹️

I'm surprised at the response from the exec but without knowing your personal circumstances, is it possible that they (wrongly) think you can access care without your carer but are choosing not to?
The bleeding might be normal- your body may just be taking longer to clear everything out- or maybe it's your period coming back? But if you have any signs of infection (severe pain, temperature, offensive smell) I would call ambulance again. Otherwise I guess wait for your appointment with GP.
Emergency units should be able to care for people with disabilities, it's disgraceful that these ones don't seem to be even trying. The CQC (hospital inspectors) may be your next option when you feel up to it.

Hi OP, firstly let me say how sorry I am for your loss.

I had a loss at 20 weeks. And had to have a D&C for retained products. They scanned me the next day and they hadn't got it all and rather than operate again they sent me home for 'conservative management'. A large chunk of placenta came away that evening and little pieces continued to come away over the next few days. They scanned me again and they said my lining was thickened and they couldn't tell if everything had come away and sent me on my merry way. The bleeding continued for 7 weeks or so and one morning whilst putting washing in the machine I just started to gush blood and very large clots, this didn't stop so I ended up in a&e and was admitted. They put me on medication to stop the bleeding and seemed to be passing it off as a bad period due to the timing of it and sent me home. The bleeding and intermittent clots carried on for a couple more weeks and then I had another massive bleed, I was very close to needing a transfusion that time. A few days after that admission a small fragment of placenta finally came away and it all stopped. And everything settled back down into a regular cycle. The whole process took 16 weeks. It was another month before I started to feel ok again physically.

I'm not telling you any of this to worry you and I'm sorry if it does. If you don't feel right I would continue to push them, if you do have retained products it needs sorting.

Hugs for you OP. It's an awful thing to go through.

Gosh how awful!!

Could you make an appointment to go by yourself then when you can't get on to the bed/undress offer to call your carer in, if they are unable to help. Not an ideal solution.

I'd be very concerned, particularly around the burning sensations.

It's disgusting that maternity care still isn't taken seriously.

I'm sorry for all you went through. TBH it sounds like the hospital did very little to help you +so sorry for that) so part of me thinks what is the point of going. If I don't have a temp or other infection symptoms them maybe I should just wait it out and see. 🤷 Thank you for sharing your story.

@LouieLou007

I'm sorry for all you went through. TBH it sounds like the hospital did very little to help you +so sorry for that) so part of me thinks what is the point of going. If I don't have a temp or other infection symptoms them maybe I should just wait it out and see. 🤷 Thank you for sharing your story.

It wasn't brilliant no.

How are you doing today OP?

Still the same. Bleeding increasing slightly again. I tried my GP again but the receptionist (or care clinical advisor as they're now called) went of to speak to someone and came back and said they were unable to give me an appointment as there's nothing else they can do.