The NHS just isn't good enough when dealing with pregnancy loss

[DesignerRecliner]

I've posted about this on other threads but I feel this warrants it's own discussion.

My situation is that I was diagnosed with a MMC on 11 May and was given medical management to take at home. I did this but tissue became stuck in my cervix (unbeknown to me) and I lost a lot of blood as it was pouring out of me. I had to visit the EPU on Friday 13th as an emergency and wait 2 hours to be seen. I was then given an exam with no pain relief or gas and air, which was incredibly painful. They found tissue lodged in my cervix and removed this with forceps. This was agonising.

I was admitted that night due to my blood pressure being in the toilet. The tissue that was removed was put in formalin, which meant it couldn't be used for genetic testing - despite myself and my husband making it clear that we were under a Tommy's recurrent miscarriage clinic and the tissue needed to be sent to cytogenetics.

The next day I went home and was told to look out for anymore clots or significant pain. The next 2 days I was getting more uncomfortable and bleeding heavily, I was woozy when standing and very lethargic. Tuesday 17th I went back to the EPU and had to wait 6 hours. They eventually rescanned me and found tissue had been retained along my c section scars, but I was told it was a small piece. They offered surgery or more pessaries but heavily pushed the tablets and said surgery could perforate my uterus. I took the tablets on their advice and had more bleeding and tissue passing.

I've been in pain for the last 3 weeks and today took a pregnancy test which was a glowing positive. Called the EPU to be told to come in for a rescan to check for more retained tissue. They found the whole bloody yolk sac was still visible and inside me, so the pregnancy hadn't passed at all. This is four weeks since we were told about the MMC and six weeks since the pregnancy stopped progressing.

When asking about removal of the pregnancy, they can't offer any dates before next week! So that'll be 7 weeks I've been carrying a deceased pregnancy. On the day of surgery, I'm to be nil-by-mouth but as it's the emergency theatre list, it could be anywhere from 8am to 8pm before the surgery is performed.

This is shambolic. I know my particular situation is not the usual in terms of repeated medical management, but each time I've been to the EPU they've been dispassionate, unable to see me for hours and had multiple women crying in pain in the waiting room.

Why do we have to accept this shoddy, poor treatment? The emotional toll and anguish of losing a pregnancy is well documented and the physical effects are significant.

Why are we made to wait hours to be seen in a public waiting room?
Why are we made to wait days on end for surgery to help bring the pregnancy to an end?
Why are they so reluctant to administer more than fucking paracetamol when the pain is so significant?

Most importantly, can anyone suggest how we effect change in the treatment of women who've lost their pregnancies but wish to retain their dignity?

Thank you for reading and apologies for the essay

I have been very fortunate not to have experienced this myself, but just wanted to offer my huge sympathy and tell you how angry this has made me. It doesn’t surprise me sadly, women’s healthcare is shambolic across the board. But I just wanted to add my voice to yours and agree this HAS to change. I’m so sorry for your loss and hope that you are able to recover soon. 💐

I’m very sorry.

NHS pre/post natal treatment can all be pretty shoddy. Miscarriage treatment is really poor. All of the above has a potentially harmful effect on women and babies- very very sad.

I am so sorry you are experiencing this. Can I suggest you copy and paste this to your hospital PALS, the CEO and your MP?

Very best wishes for better times ahead.

I'm so sorry you have undergone this. Any treatment in the fertility, pre and post natal areas is shocking and just goes to show how little is thought of womens health!

I would send a copy of your story to PALs and demand a talk with the nursing manager for the wards you've been dealing with.

I’m so sorry this has happened to you. It all sounds so upsetting and traumatic.

I’ve had three miscarriages and after the second had a medical management at 12 weeks pregnant. They wouldn’t give me an appointment time so I sat in the waiting room for about 6 hours while other pregnant women came and went for scans. Then, after being given the medical miscarriage treatment, I was told to go and wait in the hospital pharmacy for codeine while the miscarriage started. The wait was another hour. I just felt so defeated and upset.

Also, I took the remains of my third miscarriage into the hospital for analysis. Although the sample was tested the next day (and found not to include anything useful for diagnosing the issue), I had to wait months for any update after I kept chasing it. I only know the sample was tested the day after I took it into the hospital because of paperwork that was later returned to me.

I don’t have time to write more now but just wanted to say you’re not alone and I hope you get the treatment you need.

Women’s healthcare generally is appalling. It’s even worse if you’re an old woman. The NHS needs a complete review. So sorry for your loss @DesignerRecliner 💐

Thank you all for your compassion and suggestions. I'll contact my MP (fortunately a female of child bearing age) and PALS.

I've done my grieving and now I'm angry!

I'm so sorry to the other women who've experienced horrendous treatment by the NHS. We deserve better

I'm really sorry, OP.

This is very tough for you.

I honestly think 'early' miscarriages and pregnancy problems are so down their list of priorities. The care is virtually non-existent. We are expected to just get on with it, and our expectations are below floor-level anyway.

If you do feel up to it, please contact PALS and ask for some enquiries to be done.

Very best wishes to you x

Anger is actually a part of grief. But YANBU.

I didn’t even have my first miscarriage documented properly, so I got phone call and text reminders for appointments i couldn’t attend. IMO I wasn’t consented properly for medical management either. But it’s put up and shut up.
im so sorry for your loss. I’m sorry for your experience.

YANBU.

I had a MMC last year and found out at my 12 week scan. Was treated appalling and actually left without any after care at all after hours of sitting alone Ended up having to arrange my own medical management at a different hospital. Ended up in A&E bleeding really badly and was left sitting for hours on end.

I felt that because my baby had already gone I was of absolutely no concern at all.

I am sorry for your loss.
I had a mmc at 12 weeks 18 years ago. I waited for my EPAU in a room with ladies waiting for 20 week scans and after being told to “go home and let nature take its course” I walked back out past ladies excitedly waving scan photos and phoning family to tell them the sex of their baby.
luckily I was able to get straight into the local BUPA hospital, who were amazing
Some years later I found myself in a position to suggest some changes to our local hospital and one of the things I was able to do was create a separate entrance and waiting room for the EPAU. I really hope it made things just a little bit easier for ladies who were in the same position I had been.

I'm so very sorry for your loss and for this shoddy treatment

I had a MMC in 2012, and minutes after being told there was no heartbeat on my first scan, DH and I were left sitting in the corridor next to the machine where couples were collecting prints of their scan pictures while we waited to speak to a more senior midwife. She was lovely, butshe basically told us to go home and wait, and come back after seven days for another scan. I started to bleed very heavily a few days later, rang the unit, and they basically said 'OK, we'll cancel your scan, thanks for letting us know, bye bye!' and left me to it. I had agonising pains - worse than labour pains - for hours at a time every day for ten days. My GP dismissed this as 'period pains but they feel worse because you're emotional', and sent me away with some co-codamol. Like you, it turned out that I actually had tissue lodged in my cervix, which was in spasm. I then lost enormous amounts of blood for days as the miscarriage completed, which I just dealt with at home because I'd heard so many horror stories about miscarrying women's treatment at A&E. The whole episode was so traumatic that I was never brave enough to try for another baby.

Oh OP.

I had a similar experience including tissue being removed with no pain relief.

The whole process of my MMC was horrific and I was treated like dirt.

Next MMC, I was under the care of a private maternity hospital - the difference in medical care, compassion and respect compared to the NHS was like night and day.

I am so sorry for your loss.

I have to say as well, I had tissue lodged in my cervix and went into cervical shock. Started fitting and lost consciousness and a lot of blood.

This was 10 years ago, dh was with me thankfully and paramedics arrived in minuets. Dh thought I was dead, apparently I was grey and lifeless on the floor after the sezuires.

Its just horrific all of you who have had tissue lodged in your cervix and have been brushed off. It can have serious consequences.

There seems to be quite a lot of people who still believe as follows:
"You're only a woman and you were only pregnant, not ill. In the olden days, women were strong and just retained their dead babies and died quietly of infection - why do you need surgery and pain relief?"
It's a disgusting attitude and I so wish I knew how we could forge our way past it.
So sorry for your loss and the way you have been treated 💐

So sorry :(
It does sound horrible.

In so sorry OP I just wanted to say you have my utmost sympathies for your MMC and for all of this terrible trauma that you've now experienced at the hands of a health service that should be there to take care of you. It's unforgivable and having lived in many countries for work, not the norm or anything you should feel you should have to accept.

I am raging angry for you. I wish I could do something to help. You deserve so much better than this.

I really dont understand is pain relief massively exspensive or something? Are women not supposed to be happy and safe and taken care of?

I'm very sorry about your experience. It also absolutely matches my own of a MMC 9 years ago which is disappointing to hear. Not the same events, but the same disregard for the emotional trauma of carrying around an unviable but much wanted pregnancy for an extended period of time and not being taken seriously regarding the physical impact of that. I can't imagine many other medical instances where you are literally pouring out blood and it's just dismissed as nothing.

It's also the way it's spoken about. We were asked how far along we "thought" I was, when we answered 10 weeks I was told "well there's no 10 week old foetus in there". That was how we were told I was miscarrying. Then they repeatedly corrected me if I referred to it as "the baby". Yes, sure to you it's the products of conception, but to me it was a baby. You don't need to use the same terminology, but don't correct me. And that's just the lack of compassion before I even start on the lack of decent medical care.

With my stillborn daughter, the care was exceptional. Really, it's what put me on a healing path; just the tenderness, compassion, and care shown to us as a family was a total gift (shout out to Kingston Hospital).
With my miscarriages, it was like, "It's just a period. Off you go."
I was actually reflecting yesterday on the treatment I received from the clinicians in the EPU when it was discovered I'd miscarried (this is about 11 or 12 years ago now) and it really upset me, thinking about it, remembering it, all of these years later. I felt like my tears and emotions were slowing down the clinic and annoying the clinicians who had to 'deal with' me. There was no sympathy, no time to be shocked or upset or surprised or crestfallen. My 'late period' and me just needed to get dressed and fuck off home, basically. That was the blaring message I'd received. I walked past another woman who was clearly on a similar path; very upset, out of sorts, obviously miscarrying or had miscarried, and she had her overtired toddler in tow. And I recall thinking, there's nowhere that women like us can even sit the fuck down and catch our breath. And not a hand to hold. It's a lonely, lonely experience.
Hugs and sympathy, OP. It's a trauma, what you've experienced. I think a MMC is every pregnant mother's nightmare, sorry to rub it in. I don't mean to. Mine were not missed and still, the shock and trauma was enormous. There needs to be room to grieve, room for emotions, and time to just absorb the heartbreak. The human touch can be so woefully lacking in places where it's needed the most. I think the majority of clinicians (having been married to a GP) are utterly walled off. Sorry to any clinicians on this thread and no, you're certainly not tarred with that brush. But so many are cold and uncaring.
I'm glad you're angry, OP! Anger is an engine for change.

So sorry you are going through this Op. You are correct.

I had a miscarriage in 2014 that was traumatic. I was admitted to the EPU and given a cardboard bowl, pointed to the toilets and told to go in there and pass 'the pregnancy products'. I passed these and bought it back to the ward. The nurse shrieked at me that the bowl was numbered in pen and i should have left it in the toilet. How was i to know?! So i went back in with it and left it in there.
When i later asked what happened to it the nurse said it had gone in clinical waste. No conversation, nothing just dumped in the bin.
It was just the general lack of compassion. The nurses treated me as though i was an inconvenience. How annoying of me to come to hospital for a miscarriage! I was crying and told to be quiet because there were other patients asleep. The nurse was abrupt and rude. She was only cheery when telling me how she retires in 4 weeks time and telling me about her celebratory cruise. Bent double on the bed in agony i didnt give a fuck about her cruise.
I was also begging for pain relief and told 'we cant give you pain relief as you might still be pregnant' we cant confirm a miscarriage until your scan tomorrow. They sent me home with a few leaflets and pads, and i had to walk through the hospital and car park with blood soaked leggings, i had to sit on a carrier bag in my mums car.
When i next got pregnant i asked to be referred to a different hospital for that pregnancy even though it was miles away, i just couldnt go back.

Women are expected to stop moaning and get on with it.

I cannot describe the pain of having tissue removed from your cervix with a pair of long, blue plastic tongs, but it was made very clear that the nurse doing it just thought I should lay back and take it.

I asked for gas and air and I was laughed at and told “not a chance”, then mocked when a dr entered the room and she said to her “she was asking for gas and air - ha!” Oh how funny for them both.

I’m so very sorry you lost your baby and have been treated so callously and cruelly. I’ve had 2 mmc and was luckier in the care I received. One was found in the RMC and my consultant was on the end of the phone in minutes arranging surgery the next day as I wasn’t trying medical management again after the previous time. The postcode lottery is disgusting.

Please do write to your MP. Don’t mince your words, be as frank as you have here. And keep chasing.

Thousands of women are suffering all across rye country every day and we all deserve better care.

MN has an annual survey on miscarriage care which has been in place a while and is campaigning for change but the NHS is a mess and pregnant women are the bottom of the pile. Women need to speak up and demand better. It’s easier to try and put it behind you when the immediate horror has passed. I understand that so much.

This is beyond appalling, OP. I'm so sorry you were treated this way. I second other posters - write to Pals, and perhaps also write to your MP. I'm sure I'm not alone in saying I'd sign a petition/support any lobbying for changes.

Complain formally.
If it happens again refuse to let them examine you, remove tissue without pain relief.

Always ask to speak to the person in charge if you are not being afforded clarity, empathy or pain relief.