Bleeding and still testing positive 7 weeks after miscarriage

[Lotty0493]

Sorry this is so long I have tried to summarise as best I can!

Long story short I miscarried at about 4 weeks we think on 8/8/22. I’ve been bleeding ever since that date and it’s now 24/9/22. It’s been different kinds of bleeding throughout that time (sometimes heavier sometimes very light, sometimes has had clots or brown elastic stringy bits, sometimes it’s just bright red or pink when I wipe, it genuinely depends on the day).

My hcg levels were tested on these dates and were as follows: 30/08 - 81, 01/09 - 77, 03/09 - 63, 15/09 - 44, 17/09 - 40, 19/09 - 29.

ive been liaising with the EPAU and gynae emergency clinic at my local NHS hospitals during this time - ectopic pregnancy were mentioned, retained products were mentioned, infections etc. Had swabs and bloods done, no sign of infection but was given antibiotics anyway ‘just in case’ on 08/09 and 17/09 as they weren’t sure why I was still testing positive and still having cramps and bleeding.

I have had to argue the toss with the EPAU at my local NHS hospital to get an ultrasound scan, and wasn’t offered a scan until 22/09 when I said I was going to take it further and make a complaint as I didn’t believe I could still be in pain and bleeding all this time later and nothing be wrong.

They did the scan on 22/09 and said everything looked healthy and normal and said sometimes women just get a bit of ‘uterine dysfunction’ after a miscarriage. She went as far as to show me pics of my uterus, ovaries etc off the scan compared to pics of other scans where there are complications I think to try and reassure me a bit that all is ok.

I asked them what the treatment is for uterine dysfunction and she said ‘don’t take anything hormonal just stop stressing about it and let it run it’s course’.

However, they did a urine test the same day rather than another hcg blood test and the test was very clearly still showing up positive, faint but very clear.

They have sent me home with a spare test to do on 30/09 next week and said to ‘forget about it between now and then’. They said they’ll ring me Friday and are expecting the test to be negative but if it’s not they’ll speak to someone from the gynae team.

I have tried to heed their advice and just put it to the back of my mind, and on 23/09 I did think the bleeding had nearly stopped but I’ve continued to have cramp like pains and then I’ve woken up today 24/09 and the bleeding has got heavier again so it’s just very red when I wipe again now like it’s actively bleeding.

I’m just at my wits end of what to do at this point, I’m exhausted and feel so gross bleeding all this time, it’s zapped all my energy and my mental health has took a blow because of all the worrying and stress of not knowing what is going on with my own body.

I just wanted to put this out there to see if anyone has any experiences or anyone has any experience in this in a professional capacity to give me an idea of things that I can look into or ask them for at the clinic etc because I just feel like I’m never going to stop bleeding and being in pain with the cramps :(

TYIA xx

Hi @Lotty0493
Sadly, I can't give you any advice or share any experience except that I have also had a miscarriage (missed miscarriage) and haven't had a period yet, I passed the tissue between 18-25 August. I couldn't read your post and not reply, as it sounds like such a horrible experience for you.
The only thing I can think of to suggest is that you keep a written diary of your symptoms in the hope that eventually you'll get to a doctor who can figure out what exactly is happening to you?
I can relate to how draining the process is and how heartbreaking it feels.

Hi @Lotty0493

Sorry to hear what you are going through. I wanted to reply to let you know you are not alone.

I bled for 8.5 weeks after my MMC, after taking the first dose of Misoprostol. The first 4 weeks I assume the ongoing bleeding was because I had retained tissue (confirmed by scan), but then I had an MVA and still bled for 4 weeks after that. Sometimes the bleeding got lighter and almost stopped, but then it restarted. Fortunately I did not have very much cramping.

I did have regular scans at the EPU but they never seemed bothered about the bleeding because it was light. When it finally stopped the nurse said that I had just taken longer than most people for the miscarriage to complete. Annoyingly I only had 1 week of no bleeding before my period arrived!

So unfortunately I don’t have any advice for you, just wanted to say I am sorry you are going through this, and I feel for you. I think it’s positive that your pregnancy test was only faintly positive, and hoping that the bleeding stops soon.